I’m still amazed that my entry, “Labyrinthitis; or The Missing Week”, has spawned something of a support group. The community that has built up around it has now posted hundreds of comments. Indeed, I’m starting to think that it might be a better idea to set up a second weblog solely to host this community and to give some of the regular posters editorial rights on it. For now, though, I’m just setting up a third page of comments.
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It's me again -- after feeling much better for almost two weeks -- I am feeling awful at 1:30 am. I woke up and immediately felt horrible -- my arm had fallen asleep, my stomach felt bad, my head felt bizarre, my whole body felt completely strange -- like something was wrong with my body chemistry -- I also felt like I was going to float away if I went back to sleep. Then I started to panic which didn't help. I don't know if it was something I ate or if I'm coming down with something else. It also happened to me earlier in the day. Can anyone relate to this feeling throughout your entire body? It's hard to describe. I can't believe that this horrible illness causes such bizarre symptoms -- just when I was feeling so much better. Mary |
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Hi, everybody, Mary, this illness does produce the strangest and the weirdest sensations in your whole body, not only in the head. While I am absolutely sure, that I am slo-o-oly recovering from my worst bout of labs, I still have from time to time that strange feeling of numbness in my arms. Often my feet are cold like ice while my head is "on fire". I put a heater on my feet, and a cold pack to my forehead. I start shaking and trembling, feel nauseated and exhausted. And at the same time - no real vertigo! Just this floating away sensation. I am not panicking any more of all this - I experienced it many times before during recurrences of the inner ear disorder. It is extremely hard to explain it to anybody, and most of all – to my loving and beloved husband. He thinks, that I am too nervous and exaggerating, that I am hypochondriac and overly concerned about my illness. He says, that my symptoms up to 70% are produced by anxiety. At least, he gives 30% to my inner ear disorder. Keep your chin up, everybody. Anna |
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Thanks so much, Anna. I really needed some support -- I felt so bad last night and still do today although for some reason everything is easier to take when it's not the middle of the night. I think that I may have a flu bug on top of a resurgence of inner ear stuff. Have you ever felt like you may have a high blood pressure problem? Sometimes I wonder if part of the bad feeling throughout my body is an increase in blood pressure. My doctor didn't seem to be concerned about it last week so I guess that I shouldn't worry. My husband thinks that I am too nervous about everything too -- last night I asked him if I was going to drop dead -- I was only slightly kidding! :) But honestly these symptoms are the absolute worst -- I know that none of it is in my head especially b/c I've never been a hypochondriac about anything else in my life. When you feel horrible, you feel horrible -- it is not in our heads! No one else can understand them unless they have had a vestibular problem themselves. Anyway -- I will keep my chin up and you and everyone else do the same. Thanks again -- Mary |
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I have just sat and read all of your comments,and thank god that at last there is some one out there that understands !! I have suffered from labs for the past 3 years on and off. This last bout has last for 2 weeks so far, the kids think I'm grumpy, my husband thinks i'm a hypochondriac and my boss is getting fed up of me. Thank god for the internet ! I'll be trying everything all of you have suggested, because i really feel awful. I have read that the longer you have it the easier it gets, but i certainly don't feel this way. I'm on my way back to the doctor tommorrow, more stemitil probably. |
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Hi to all, in response to Anna's question, the doctor who treats inner ear problems is Dr. John Epley, Portland Otologic Clinic. He has a web site with valuable information. epleyclinic.com I sat next to a lady in the waiting room who had suffered horribly from VL and she said Dr. Epley helped her as she is back to 100% normal. I hope that my husband can get the same results. I will keep you posted. Carol |
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Dr. Epley is known for his the famous Epley manouver - replacement of ear rocks in BPPV patients. The manouver works different for different people, but it helps many of them. I just did not know, that Dr. Epley also suggests other treatments, like what Carol’s husband is going to have. I will definitely search for all the information about this on the Internet. Anna
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Carol -- Thank you so much for telling us about your husband's doctor -- I can't believe that it is the same doctor who came up with the Epley manuever. I am only three hours away from Portland -- I called his office today and may go see him if my symptoms do not clear up soon. The woman I spoke with said that I needed to see an otologist since they have special knowledge/training of the inner ear. I am so angry that none of the doctors that I have seen referred me to one. One thing very interesting on Dr. Epley's website was how sometimes anti-viral drugs are given for labyrinthitis -- has anyone taken these? Mary |
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Hi Mary - yes anti virals can be given for labyrinthitis as can steroids such as prednisone. They are not given out much in the UK - noone mentioned them to me when I got ill - but I think more widely used in USA. They are only potentially useful within the first couple of weeks of the onset of labs. xxx |
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Hi Everyone, I think I am recovered after 6-7 months of Labs. I had a bad cold last week and I was worried about some of the lab symtoms reoccuring, but, I seem to be fine. As a 50ish woman I am going through many normal "changes". There are alot of overlapping symtoms of labs and menopause. Most important though is I'm feeling good and like my old self again. Perhaps I should have a teashirt made that says " I survived and recovered from Labs". I hate to admit this, but it's true. It takes time for our bodies to overcome a virus, and this one is really a challenge. Everyone, good luch and keep your chins up. Robin
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Hi, everyone, Robin - you've made rather good recovery time! I absolutely love your idea about the teashirt that says " I survived and recovered from Labs". I have some thoughts about anti-viral drugs, I will post later tonight. Anna
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Thanks for the reply, Emma. Here's a question for anyone out there: It seems that with most viral illnesses there is a pretty standard recovery process -- you feel bad and then slowly (or quickly) you begin to feel better each day until fully recovered with few, if any, setbacks. If you think of it in terms of a graph, the graph line would steadily move upward until you are fully healthy. Why is this illness so different? As I've mentioned before, I have had days (the last was a full week) where I thought that I was about 85% recovered only to wake up the next day and be back at 40-50%. Does this type of roller coaster ride with all of the symptoms signal that maybe it is not viral labs but a different type of inner ear disorder????? Mary
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Hi,everyone, Mary is right - this illness is a roller coaster. My understanding of it is the following. A virus is active only in the beginning on this illness. As time goes on, the virus is not active any more, because your body gets over it. But the damage to your vestibular system is already done. Here recovery begins, with ups and downs, because everything effects your vestibular system: weather changes, your body overall health changes, how much rest and sleep you have, hormone fluctuations, eating on time, noises, etc. (you can continue this list yourself). I know a guy in New York, who had a surgery for removing a benign tumor from his acoustic nerve (acoustic and vestibular nerves run extremely close to each other). He had the same pattern of recovery as all of us, labbys, do (same vestibular symptoms, and ups, downs, ups, downs). His vestibular system was damaged first by the tumor, and second - by the sugery. He has made full recovery, by the way. Anna |
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[ women only section] Mary, I too have noticed that my symptoms seem to get worse when I am on my period but I have read through the comments on this sight and I dont think anyone else has mentioned it. I am relieved you said this as after feeling steadily better for the past few weeks I was worried that I was going downhill again. I am now back at work after taking over 2 months off due to LABS. I am still only a shadow of my former self. I will do anything to get out of leaving the house. Infact the only places I go are work which is a few minutes away on foot and to the local shops. My family have been kindly doing my food shopping for me and I done most of my xmas shopping over the internet I know I am not doing mysef any favours but I feel giddy now even thinking about a crowded shopping centre or even having to queue to pay in a shop. It seems that when I'm panicking about these things happening they actually do begin to - has anyone else experienced this? Nikki, be interested to hear how you are doing and if you are able to get out any more confidently than last time. Arranged my first outing to a local theatre on Thursday and determined that i am going to take my 2 children there myself. If I am at home on the sofa I feel ok so I am going to try thinking that to myself - after all I'll be doing the same thind only somewhere else. I also find that apart from the gingko, chewing gum seems to help.Also I read that in moments of panic touching the roof of your mouth with your tongue quickly is supposed to help [obviously keep your lips together as you may look pretty strange doing this]. Good luck to you all and I look forward to hearing your success stories soon. |
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Hello, I have posted but infrequently. I have had this horror for about 7 months now. From the onset I was put on Meclizine which is an antihistimine. That knocked me out so I was therefor switched to Allegra a lot less powerful but could manage. I have figured that it is time to get off the allegra. I am still dizzy but one of the side effects of the allegra is dizzinesss/fagigue and back pain. Some of the problems I have been having. This is just a test to see if getting the meds out of the system for a bit help me to not only feel better but finally FORCE yes force my brain to just deal with this and not use the allegra to cover it up enough for me to not fully conpensate. I will let you all know if this helps in any way shape or form.. I am tire of being tired. Went to a job with my boyfriend (he is a DJ part time) he could not leave to take me home, we were an hour away from his house so a taxi would be to expensive so I sent 1/2 of the evening sleeping in the car. Thank gosh he has a decent car for sleeping in. Am tired....so tired of this. Emily |
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Hi everyone, I too have suffered from Labyrinthitis. Just a quick question, I started feeling better in decemeber, but now I have sinusitis and I'm sooooo afriad that I'm going back to square one with the labs....is this possible? Do I have to worry evertime I get sick now?? Also has anyone found that after sleeping all night your symptoms are worse in the morning?? I sooooooo appreicate any feed back Laurie |
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I have posted to this site on several occasions. I got Labyrinthitis back on Oct 8th, back then I was not doing very well but I am doing MUCH better today! I've even returned to work. And I have some advice based on my experiences with this thing... I URGE YOU, THAT IF YOU HAVE BEEN SUFFERING FROM LABYRINTHITIS FOR LONGER THAN 8 WEEKS TO SEEK MEDICAL ATTENTION! If you are not 100% comfident, or if you do not have complete trust in the doctor you are seeing, or if the doctor is doing nothing to treat your symptoms, then get a second opinion, or a third, or a fourth, what ever it takes! It was only after seeing a third doctor that I was diagnosed as suffering from severe depression! Depression is very hard for a G.P. to recognise. I know! I couldn't believe that's what it was either, but now after only 4 weeks of medication and adult-councelling I am feeling normal again! I'm smiling, laughing, running, bicycling...and it's -14 degrees outside! Good Luck, Get Well Bruno |
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Bruno, I hope you come back :) Were you suffering from depression all along?? was this the cause of some of your dizziness?? I'm extrememy depressed, so any feed back would be great Laurie |
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Hi, friends None of us are crazy!!! This is what our illness does to our minds. It is definitely impossible to avoid fears, panic attacks, anxiety and depression with this “dizzy monster” which attacks you so severely. The longer your illness lasts, and the more severe your symptoms are – the more chances to get all these really unpleasant psychiatric symptoms. I am a very happy, active, accomplished, outgoing person with a loving family, lots of friends, very interesting and demanding job - in between the bouts of labs. I am a completely different creature during the bouts – total wreck physically and emotionally. I take antidepressants during the worst times of my bouts – nothing to be ashamed of !!!!! It helps our minds and bodies to get through the horrible symptoms of this illness. Bruno, I agree, that you have to find the right doctor who would point out and treat your emotional state. Unfortunately, doctors can not treat the real cause of our depression - our ailing inner ears. But definitely, trying to improve your emotional health - is already a big step towards your recovery. By the way, this site, or other similar support groups, is the best "cognitive behavioral therapy" or "adult-councelling" fighting fears, anxiety and depression maybe even better, than medication. Good luck to everybody. Anna
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Anna, Just wanted to acknowledge you. I have read your comments throughout these pages and have found them really helpful when I have been going through difficult stages of this horrible illness. You sadly seem to know this illness all too well and what I and others are going through. Are you all able to carry on with your jobs etc when you have LABS as mine was so severe I literally couldn't leave the house. Finding it really hard to get back out and about as a result. Anyone offer any advice? Keep your chins up! Kay |
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Just a quick question....how long about Labs did you suffer the Anxiety and Mostly the depression??? You guys are alll soooo great :) Laurie |
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Hi, everybody, Laurie, Kay, I think , that everybody is different with anxiety and depression, but it hits almost everybody with this illness. As for me, I push myself, trying to go out to stores, or small parties from time to time. But not often. I keep all my strength for working as an engineer and researcher 8 hours a day, I feel exhausted after work. Kay, - do not blame yourself for not being able to leave the house. You are not ready for this yet. I was in your situation for 6 months in 2004. And look - I am doing much better now! I ordered the newest book "Consumer handbook on dizziness and vertigo at Amazon.com" to be published in the end of February. I expect many helpful advices on coping with my illness. Great website - labyrinthitis.org.uk. Have a look at it. Do not give up! Hugs, Anna
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Hi everyone, Just a little something I've nocticed. the dizziness and and unsteady feeling has pretty much gone, but I have noticed when I wake from sleeping on my back....Oh Boy not a good feeling!!! Can anyone relate??? Laurie |
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Does this anxiety, fear and depression ever gooooo away??? Laurie |
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Hi everyone: Laurie - when I wake up in the morning, I usually do not feel at all well -- it's sort of like I just spent a night sleeping on a boat at sea -- upset stomach, etc. During the very worst of this, I can only sleep on my back with my head elevated -- it feels like the wild spins are going to come back if I sleep in any other position. In re to anxiety, fear, depression, I have felt all of these things b/c who wouldn't after feeling so horrible for months. I think that it is a completely logical emotional response to feeling so sick for so long with no effective treatment. However, about three weeks ago, I had a week and a half where my body swaying/dizziness/stomach upset/brain fog/etc. was much, much better -- during this period my emotional state almost returned to normal -- I still felt a little anxious about having another episode of severe brain fog/lightheadedness but other than that it was a huge difference. So I think that once the physical symptoms let up, one's emotional state drastically improves. Unfortunately, all of my symptoms have returned for some reason and returned with almost the same intensity as in the beginning (but without any true vertigo spins). Let's all hang in there -- stay strong! Mary |
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Hi, everybody, Laurie - calm down!! You said - "the dizziness and and unsteady feeling has pretty much gone". This is the most important thing!!! Your mood will improve and the anxiety will be gone as you stay longer in normal, or close to normal state. Read Mary's previous post - I agree with every word of hers. Mary - you said, that you had a really good week, but now you again have all the symptoms "but without any true vertigo spins". The absence of virtigo spins is also a positive sighn! You are still going towards recovery with high "ups" and low "downs". But the tendency it still slow-slow better and better. Anna |
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Thankyou Anna :) I'm soooooo glad I found you all. I was truly beginning to think I was cracking up :) Laurie |
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Hello, It has been almost one week off of my medicines. I am actually doing better without them than with. I still am dizzy but a LOT less tired. And I acutally seem to have long moments where I am completely dizzy free. I am wondering if my bran which was groged down by the meds before I stoped is now Forcing itself to deal with the damage. Not ignore it. I am hopeing that within the month I will be better most of the time. I will keep you all posted. I am aware that this is my experience and I am not recomending someone get off there meds unelss they and there doctors are comphortable with this decision. Oh and there are moments when I am a bit worse but it seems to me that after the small spell of worse my brain is kicking in and I have a large time of better. Thanks. Emily |
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Hi all, Well , latest bout is passing, but still have have positional problems. Every time I look down or turn my head, whoa! I am so amazed, I walked into a meeting the week before last, holding onto chairs, and was recognised immediatley by another dizzy! She looked at me and said, 'oh, you 've got V.L.' She had it for a year, and was hospitalised with it twice. She recommended 'Pulsitilla', and I am going for that now too! The worse thing is that this latest bout has knackered my confidence. I cannot agree to go to any social gathering, or away on holiday, or anywhere. I am still pretty stuck to the house. Infact my (perception) of life outside these four walls is hell! Took last week off work for half term. Going back to work next week. Wish me luck, I only get 7 weeks hol per year, and I can only lie for so long......... Best Wishes, Kate |
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re. anxiety. The thing that remains with me the most from all this is anxiety. Although I feel pretty well most of the time, I still get anxious several times a day. For example, (and I've mentioned this before)if I feel a bit dizzy/unbalanced for any reason, and it may be somehting as simple as walking onto an uneven floor, I feel the familiar fear feeling creeping into my chest. I do a lot of "self-talk". I say to myself: "Its only an uneven surface, its not dizziness, its ok, its perfectly normal". If I feel a bit tired, or off-colour, or yes, if I am menstruating, I start to feel a bit dizzy and anxious. So it is also linked to a feeling of physical well-being. Its hard to tell if the dizziness is the remainder of the BPPV/labs/ whatever-it-was, or whether its purely anxiety, or partly from other physical reason as simple as some kind of allergy. After all, the neurologist did say there was no physical inner ear reason for me to still feel dizzy. Also, if I am reading about dizziness or thinking about it - I start to feel dizzy. I am now unable to remember or distinguish what I felt like before this happened. E.g. this morning I bent over to pet the puppy and felt light-headed, then afraid. Quite possibly this action, before I had BPPV, would have given me the same lightheaded feeling, but now of course its all amplified by my being super-aware of it. I do go places but of course without the same confidence (or rather the obliviousness of the healthy) as I used to. I always think: what if I get an attack if I go to this or that place? What if I cant get home, what if, what if, what if? I then have to self talk "ok I have my stemetil, I have my mobile phone and I can call a taxi". If I'm not doing the "what if" thing and concentrating on something else, I am fine. But usually I stick to familar places, or go with someone. As Kate said its "...knackered my confidence". I also think twice about social occasions, holidays, etc. I fear that work might fly me away on a job and I will get sick again and be alone and unable to return. I think that the scariest thing about the possiblity of the BPPV/etc. returning is the fear and anxiety that goes with it. At the moment I feel that if it returned in the near future, I would still be too emotionally fragile to deal with it and I would crack up. I fear the fear. Having said all that, before this all happened I was quite an anxious person who worried excessively and always was thinking of "what ifs", so this has really tipped the scales. I've tried doing yoga and relaxation tapes but am thinking of going to see a phsychologist anyway. I'm sure most people would probably be able to pull themselves togetehr a bit easier than a habitual chronic worrier so i wouldnt think that other people would have it forever. Anyway, on the whole life is almost normal. I go to work and go to the gym and do most everything. So cheer up! Sorry if this sounds so negative because mostly my quality of life is excellent. |
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Oh Nikki you sound just like me...... I have always been a person who has delt with anxiety, but now its is 10 fold!!! I suffered from Labyrinthitis to which I believe is pretty much gone, but I think I now get the phycholocail ( soory cant speel) dizziness. I'm left feeling anxious and depressed. I what if, what if EVERYTHING to the point where I don't want to leave my house!!! this whole labyrinthitis has put my anxiety through the roof!!! would love to chat with you sometime :) maybe together we can figure this fear and anxiety out! Laurie |
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P.S. My Doctor gave me Xanax (anti anxiety meds) also which really seems to help calm me down. Anyone else have their doctor talked to them about the anxiety from this and given meds for it? :) |
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Hi all - been away for a week but just read all comments. So gld bruno is better tho wonder if the depression was simply holding you back frm recovery from labs - you dont normally get inner ear type dizziness with depression. Often anti depressants can help a labs patient to recover because "compensation" needs serotonin to work. Agree with anna's descritpion about the up and down nature of this and the fact that after a few weeks the prob is no longer viral. CBT = very helpful. Am having it. I got mild depression probs about a year into this. Nothing severe tho and am better than I was. I cope pretty well. Hugs to all xxx |
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Hi everyone: Emma -- I have a couple of questions: it seems like you are very well-educated in re to the specifics of inner ear problems -- where did you get your info??? Also -- can you explain what you mean by "compensation needs serotonin to work"? Does that mean that exercising may help (isn't serotonin what is produced by your body when you exercise)? What is "CBT" - cranial therapy? Interesting that you mention that depression does not normally cause inner ear-type dizziness -- I saw my internist last week for a physical --I'm sitting there looking sick and pathetic and sounding pathetic and she started asking me about feeling depressed. I know that my illness is not caused by depression although it is certainly "depressing" to feel horrible for so long and not be able to live a "normal" active life. By the way, wouldn't it be nice to see doctors who had actually experienced these type of symptoms themselves? Trying to explain the intense brain fog is difficult -- doctors look at you as if they have no idea what you are talking about! Hang in there all -- Mary |
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Hi Mary. Have got my info from having this for 2 years and lots of internet and book research... The serotonin theory is just a theory. They think depression/anxiety certainly hinders compensation. Your doctor was prob meaning do you feel depressed as a result of this disorder - which is v common. CBT = Cognitive Behaviour Therapy. It is mentioned on my website quite a lot. xxx |
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Hi, everybody, CBT = Cognitive Behaviour Therapy. I am sure it is very good for getting your confidence back - for all types of people - "anxiety" type and "non-anxiety". I am normally a non-fretter. I never worry about little things, even "big" things like money, or public appearence, or thinking "what people think of me". I am a confident type of person, (hope, that not arrogant, or boaster). But anxiety from dizzyness does affect me, especially due to recurrent type of my illness and its long term. So, I am actively in support of taking anti-depressants and getting CBT (if it is possible in your area). Emma - "The serotonin theory is just a theory. They think depression/anxiety certainly hinders compensation" I have big doubts about it. No facts to support the theory. Anna |
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Thanks, Emma and Anna. Emma -- I can't believe that you have been dealing with this for two years at such a young age -- it seems like you have handled it very, very well which means that you are an especially strong person -- remind yourself of that when things become especially hard. By the way, I have spoken with someone in Dr. Epley's office a few times -- it was great to speak with someone who actually understands vestibular problems. She said that brain fog and mental processing problems were very, very common (the symptom that has always concerned me the most). More than once, she said, "I want you to know that you are not going crazy." I loved hearing that from someone with experience! She also explained the body swaying that I have when my eyes are closed and I am standing up -- she said this happens b/c my eyes are now balancing my body (not my vestibular system) -- so whem my eyes are closed, I lose my balance since there is no focus point for my eyes. And this causes extra fatigue b/c my eyes/brain are working so hard to keep my body upright. Pretty simple explanations but again good to hear from someone associated with Dr. Epley. Also, she said that one reason stores, driving, etc. are problematic is b/c of movement in your peripheral vision -- this can cause the increased dizziness/lightedness/spaciness when in supermarkets, etc. Based on what I told her so far, she thought it could be any of the following: an irritable lesion left from a virus, chronic labyrinthitis, or a fistula (although she said that only 10-15% of people in these situations have fistulas). She also didn't rule anything else out b/c she said that one episode or symptom can change the whole diagnosis (and I haven't given her a complete history yet) -- that is why they spend a long time getting each patient's history b/4 coming to see them. Anyway -- it takes a least two months to get an appt. with him and then you have to commit to being in Portland for two weeks b/c he does such extensive testing and analyses. But I am not ruling it out in case these symptoms continue. Didn't mean to go on so long about that but maybe someone will find that info. helpful. Hang in there everyone. Mary |
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Anna - am only going from what my neuro-otologist has told me and what I have read in her book - That recovery from this can be hindered by anxiety and depression for whatever reason. xxx |
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Hi, everyone, Mary, thank you for the interesting information about talking with a person at Dr. Epley's clinic. How did you reach her? Just on the phone? Do they consult over the phone? Anna |
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Emily Can identify with you completely. I'm now back at work. I've been taking betahistine since December but have found it makes me feel quite weak and energyless. Stopped taking it about four days ago and afraid the dizziness has returned although not half as bad, thankfully. For me the room is no longer spinning so at least I can leave the house - for me at the moment its a choice between whether i want to stay at home feeling weak with no dizziness or go to work each day with a little dizziness but generally feeling okay. Anyone found Betahistine a little overpowering energywise? Be interested to hear! Kay. |
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Hi everyone, I was hoping if I explained my story I could be given some insight as to this being labs or not. In September of 2004 I had a very bad case of Bronchitis which lasted a good 3 weeks...I had never coughed soooo much in my life. Anyway, 4 weeks later November 1st I was out with my husband and I put my head down to get something from my pruse and when I came back up....whamo!!! I got dizzy, hot and felt sick. I didn't get sick or anything, but I remember feeling funny as we rushed home. We got home and I was walking around okay and them wham it hit me again. My husband said it was a panic attack, because i do suffer from anxiety, but this was something I had never felt before. The rest of the night I was dizzy feeling and scared, but other than that I was okay. The next 2 days I was okay, not dizzy, but very anxious. That thursday I started to where I was dizzy all the time and Friday I had another spell to where I also felt faint.I had about three weeks of 24/7 dizziness. After that I felt very unsteady on my feet, but it was like if I had i bad day I'd have a good night, if I had a good day I'd have a bad night. it was like it would come and go. This went on until the middle of Decemeber. In Decemeber My anxiety went through the roof, but the dizzy unsteady feeling was gone. I still to this day when waking in the morning feel dizzy and unsteady, but once I get myself going I'm okay. I also noticed that sleeping on my back is a big no no because I get a little dizzy feelings. My Doctor says it was Labyrinthitis, but I'm really not sure and its driving me nuts!!! :) I have to admit something here also....I have become OBSESSED with the fear of dizziness! Does any of this sound like labs to you guys and here is the big question......once to start to recover, you can't go back to square one, can you??? I'm sooooo afraid I'm going to get dizzy and it will never go away. I'm wondering if at this point I'm creating my symptoms with the fear. Sorry for the long story, but you guys seem sooooooooo good with all this stuff :) Thanks everyone Laurie |
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Hi all -- Anna, I just called Dr. Epley's clinic directly (the number is on his website). I first talked with the receptionist and then a woman who is the patient scheduler for out-of-town patients called me back. She asked me some questions -- trying, I think, to make sure that I really had a vestibular problem -- and explained the scheduling procedure. I don't think that they do consultations over the phone -- she was just asking me questions to get a little of my history -- she did explain a few things to me in re to symptoms which I mentioned in my prior post. She did mention that they see patients from all over the U.S. and other countries. Given your long history with vestibular problems, you may want to look into whether it would be worth the time (two weeks) and expense to visit him. Hope this helps -- Mary |
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Hi, everybody. I am having a very busy day at work (long meeting and technology discussion with our vice-president). Tired amazingly, but quite happy, that I can do this!!! Laurie - hang on. You said - "I have become OBSESSED with the fear of dizziness!" Not only you - it is in human nature. You are not weaker, than anybody of us. Three-four months ago I was exactly at the point where you are now (fearful!!!) Mary - thank you very much for the information. I will think of a possibility to visit (some day, may be)one of really good doctors. Kay - Betahistine - is it from antihistamine, to fight allergy, drugs? Everybody, stay strong! We shall overcome... Anna |
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Betahistine is SERC - an antihistamine but all vestibular suppressants are. Yes it too made me v zombie like but I onyl too it for 2 days. You prob know this anyway but vestibular suppressants delay not help, the compensation process. xx |
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Thanks Em, could you explain a bit more about what you mean as I am a bit confused ( sorry for sounding a bit dim) ! |
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Kay - prob best to read my website - see links at top of this page - see the VRT section and it will explain the nature of compensation. Basically for compensation to happen you need to be active and to provoke dizziness. The medication sedates the system so it does not respond properly - ie: it covers up the dizziness - this hinders compensation as the brian does nt know of the problem in the inner ear. Best way to recovery = no medication and staying active plus tailored VRT. Hope this helps xx |
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Emma -- Just read the section on VRT on your website -- very interesting -- I should have read that part 6 mos. ago. I saw my ENT last week and he is referring me to a rehabilitation therapist -- first, he is having me go for another test (I forget the name of it). How did VRT help you? I know that I have not been active enough -- maybe that has slowed down my recovery. By the way, your website is excellent - very informative and well-written. Mary |
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Thanks mary - still doing VRt - no real results yet - takes a year or more to show results - am plugging away! Is the test the dix hallpike? xx |
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Hi, would recommend reading above section to all. A friend of mine has been diagnosed with Labs this week. I can't believe the coincidence as I personally had not heard of it until I got it late last year. She was very depressed and worried that she had some more serious illness to do with the brain (like a tumour) so I have printed off the symptoms from Ems site and am going to take them round to show her tomorrow during my lunch hour. I think she thinks I'm just trying to make her feel better when I say that these weird assorted symptoms are all part of this. It was a huge relief to feel that I was past 'that stage' and on the road to recovery although I think it will be quite some time before I feel like myself again if at all! |
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Hi everyone: Emma -- I have a quick question for you. On your website you talk about the "constant internal movement," "spinning in the head - marbles in head" -- has this ever happened to you when you are lying down and on the verge of falling asleep?? I get a very scary feeling sometimes in my head when I am lying down and starting to fall asleep or doze off or when I wake up and then am trying to fall back asleep -- it feels like my brain is going to spin/float out of my head and I am going to lose consciousness if I keep my eyes closed (but the room is not spinning). Is this anything at all like what you have experienced?? Or anyone else out there?? It happened to me this morning (the first time in a while) -- it is a very bizarre, frightening feeling. Anna -- I remember you mentioning that it would be nice for the doctors to give us sufferers a written list of the symptoms that we may experience. My ENT never did any such thing and whenever I bring up brain fog, he just attributes it to the general feeling of being sick -- even though I know that it is certainly not the same thing. I'm sure that he would look at me like I was crazy if I mentioned the symptom I described above. Sorry for the venting -- take care everyone -- Mary |
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Hi, friends My long (sorry for that!) message will be dedicated to “working with balance disorder” The following message on this topic I found on one of the websites on the Internet: “I have good days and bad days, but unfortunately more bad days. I have a headache everyday which ranges from mild to severe throughout the day. However, work is the only thing that keeps me sane. I don't want to be blunt, but I am the sort of person who needs to be kept occupied with things I'm interested in, or I would prefer not to be alive at all. I struggle, I really hate situations where I have to stand up, or go to meetings or courses, but I do it. I found the main thing that holds me back is the fear of something bad happening while I'm at work - but then I realise, only a few times in my life has vertigo/dizziness ever really put me in an awkward situation - like when I was in high school and had a severe room spinning attack. I got through it, and if anythign like that happens again, I will get through it again. Getting over that fear of something bad happening is what made me realise that I shouldn't ever even entertain notions of quitting work. Adam” I am exactly like Adam! A possibility to go to work, which I like very much (engineering and research), keeps me sane with my recurrent bouts of labs/BPPV/perilymph fistula. I feel accomplished when I do things, which I enjoy (my work, actually!). Like Adam, I have everyday headaches which ranges from mild to severe throughout the day. I hate meetings, lectures, but I have to be there from time to time. I absolutely cannot stand and talk at the same time, so I find a chair, or invite a person to go to a meeting room and to discuss things there. I ware earphones (Bose, Inc. noise- canceling technology) almost all the time, because mechanical equipment, loud voices and any vibrating noises make me dizzy and nauseated. My co-workers are very supportive, and my bosses are good to me, I think, because, I do my work decently (I hope so!). My message absolutely does not imply, that you should jump on your feet and go to work immediately if you do not feel strong enough to do this. And do not feel like you are “a loser”, if you cannot return back to work right now!!! Everybody's situation is different and unique. It depends on the current status of your inner ear disorder: how you feel, will working 8 hours every day make your worse, how you can handle your kind of job right now. Maybe, it makes sense to wait, and take care of yourself. Remember, that the situation may change to “better” pretty soon, …. or unfortunately to “worse” (if you overestimate your strength and overstress your body and mind). Mary - frankly speaking, I had very bad experience with ENT doctors in Oklahoma. I am thinking of going some day to Dr. T. Hain in Chicago - he seems to understand the problem of dizziness and all related symptoms. It is so sad, that we know more, than most of the docs. Good luck, Anna |
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Mary - I have the feelings I describe on the site constantly - havent experienced the momentary feeling you describe when falling asleept - sorry. But im sure it is all related. Also, Mary - I know what you mean about ENT's and list of symptoms but 1 thing I will say is..if you find someone v knowledgeable (I have seen the top neurotologist in my country) they will understand every feeling you describe from brain fog to spinning in the head - it is merely a question of finding the right person who sees countless inner ear disorder patients. Anna - Adam has MAV - the headaches you experience could possibly be a sign of this - has anyone ever suggested you try MAV medication? xxx |
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Thanks Anna and Emma -- and I'm glad, Emma, that you haven't felt the same feeling. You are right about finding a doctor who really understands these symptoms -- I need to search around more -- I'm not sure if I will be able to travel to Portland for two entire weeks to see Dr. Epley. Anna -- you are amazingly strong to work with all of the symptoms that you are experiencing. I think that I should push myself a little more -- maybe it will hasten my recovery. Let's all hang in there! Mary |
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hi my name is chad i woke up about 4 1/2 weeks ago from a 5 day drinking binge. i felt lightheaded 24/7 and i was very fatigued. i also woke up sweating and shaking some nights. i went to the doctors they gave me mri, bloodwork, etc. they said everything is fine. my family doctor then said i have labyrinthitis. its just constant lighthead, like a feeling that im not there completely its weird. i heard it takes 4-6 weeks to overcome. if i get like 9 or 10 hours of sleep im ok just lightheaded but if i get like 6 or 7 im so tired the next day. I want to have my social life back this sucks completely when will this go away. i think the only reason i feel alittle better is because im learning to deal with the lighthead constantly. PLEASE HELP ME?? |
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Hi chad - look at my site www.labyrinthitis.org.uk and see if anything seems familiar. Labyrinthitis normally consists of different dizziness as well as perhaps lightheadiness - it is a dizziness only found with inner ear disorders - ot normally described as lightheadiness - see website. Your problem could be liver related or something else - caused by the alcohol. xxx |
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Hi, everybody, Mary - "Anna -- you are amazingly strong to work with all of the symptoms that you are experiencing". Thank you for the compliment. You said - "I think that I should push myself a little more -- maybe it will hasten my recovery". Somehow, I feel that for me, staying at home is worse, than going to work. I do beleive, it can make my recovery faster. But, it is very personal - nobody should stress his or her body way too much. Emma - nobody prescribed me any MAV medication. Maybe, it will be beneficial for me. For now, I am going to try Sibelium, which I bought on-line without any prescription. I will let you know on the results. Chad - read Emma's website, you will learn a lot from there. Maybe, you do not have labyrinthitis at all. And she is right - check your liver first. And for God's sake - stop taking alcohol -it is a terrible poison for you now! Folks, stay strong. Anna
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well i just came back from the 2nd doctor ive went to see and he alos told me i have labyrinthis and i didnt say anything to him. he said it makes u very tired and lightheaded constantly. they gave me a mri and blood work and it came back perfect. i asked him about alcohol with my liver and that and he said liver disease wouldnt cause a constant lighthead for weeks and any other of my symptoms. but he said when u drink alcohol it makes u more tired and it did indeed. but thanks for the advise anyway. chad |
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Have a look at my site anyway and see what you think chad. Its just that lightheaded isnt normally a way to describe labyrinthitis - its a different kind of dizziness -a feeling I had never ever encountered. You also usually have some kind of vertigo esp at the start. Gp's are nt v clued about about vestibular probs and I hate to say it but often overdiagnose labyrinthitis. If it continues, seek a referral to an ENT or Neuro-otologist. Hope you feel better soon xxx |
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PS) What are your other symptoms? x |
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I have posted here a few times, came down with VL 3/04 and still have some symptoms every now and then. Mostly get dizzy when overtired. 2 weeks ago I did something I thought I would never be able to do, I rode a roller coaster. Went with my daughter to Universal Studios. Everyone getting off the rides were saying how great they were, my comment was, you should experience it with VL. makes every ride 30X more. I manage my VL every day, stay away from caffeine as much as possible, stay hydrated, get rest... While I am not 100% I am managing. There was a time when I just felt I could not do anything. Getting off the recliner was a chore itself. Everyone stay with it, it will get better, you need to get firm with yourself and just say "this will get better and I will beat this" Best of luck to all. |
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Hi to all, just wanted to update you on the treatment my husband is receiving at Dr. Epley's office. He has been having ongoing tests to decipher which ear is involved. Usually one ear only is the problem ear, rarely both ears are involved. There are many people I have met in the waiting room and they all have similar stories to all of yours. One man in his mid 20's says that weather and barometric pressure really triggers bad bouts and also he does worse when the weather is cold. He cannot go in a grocery store and says because of this he has depression. The reason I am writing is I want you all to know that do not let any doctor convince you that you are mental or kooky in the head. Many doctors before Dr. Epley tried to tell me my husband was dealing with depression or work related stress. When a doctor does not know what is wrong with you rather than try to figure it out or send you to someone with the knowledge it is much easier for them to throw a prescription of Xanax or Valium at you because it masks the problem and it gets you out of their office. Their ego's are too huge to admit they don't understand inner ear problems. Back to Dr. Epley, he tends to take his time with the actual diagnosis. Their are many inner ear disorders with the same symptoms and something slightly different can help him diagnose the correct problem. I truly feel he is the answer and wish there were more doctors with his knowledge. If any one has other questions feel free to ask because I have lived with this problem since March 2003. My husband was off work for 9 months and is still not back to normal but doing much better. Dr. Epley offers long term solutions not just temporary relief. Bonine available over the counter does help symptoms and they have a form that causes less drowsiness. It seems to work well. But we are looking for a permanent fix. Keep positive and do not let anyone convince you that you are crazy. this is a real problem and there are real cures, you just have to find them. Good Luck. Carol |
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Hi, dear fellow sufferers, I have great thanks to Carol - she is just AMAZING! What a supportive, attentive and thinking wife you are, Carol! Everybody, just look at her previous message. I printed it out and I will force my husband to read it very attentively.(I swear, I will!). He is a great guy, we are together for more, than 30 years. I had bouts of labs/BPPV/ (or who knows what it is) for all these years, on and off. I am usually an active, outgoing , just very normal person. But every time, when I am hit with this disaster, all I hear from my dear husband, are the sentenses like: "Everythings are your nerves!" (what?!), "You are obsessed with your illness" (but, who wouldn't, it this ailment takes your whole life out of you?), "You are prone to anxiety and depression" (complete nonsense in my case!), "You are hypohondriac - you should pay less attention to your pains and dizziness" (my dear darling, I really do not want you to experience what I have!), and finally "Stop chatting on the Internet with others, who have the same problems (he thinks, that all of us have mental problems). It has a bad impact on you" (total lies!) I am really angry with him and myself as well, because, under his pressure, I became almost convinved, that the most part of my problem is in my "nerves, anxiety, and depression". Actually, only recently, I began to be more strict and firm in defending my point, that my "nerves, anxiety, and depression" are all bad consequences of the real physical ailment (and a very tough ailment, by the way!). Carol, please, keep us updated. Rich - what a good news about your vacationing in Orlando. I am also doing much better. Not ready to go to the gym, though. Thanks, everybody, for being on this site. Anna
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Wow.....what a web site Emma!!!!! What a fantastic job!!!!!! I have been dealing with this labs since the beginning of Novemeber, but was trying to convince myself that it was severe anxiety, knowing in the back of my mind it reaaly wasn't. My Doctor told me it was Labs, but I was toooo afraid to believe her and she also told me it would be gone in a few months..which didn't happen. I am getting better, I little more active, but my worst times seem to be at night and waking in the morning. The Fear and anxiety that I feel seems to be the biggest issues for me at this point. Question for anyone???? Is this something that gets progressively better as time goes on??? I'm sooooo afraid of waking one morning back to square one :( Also can showering and water getting in the ears make things worse??? Any feed back would be soooooo greatly appreciated!!! Laurie |
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Hello fellow Labbies, I got the labs in July 2004,now, I believe I am now 98% recovered. I am feeling like me again. It has been a long haul. When I was first diagnosed I went to every doctor I could find. I saw an ENT, Neurologist, Allergist and my Primary GP ( I still liked him the best, at least he admitted not knowing about the labs.) I was told from the start that it could last from 8 week to a year or longer. I couldn't believe that this visus couldn't be cured. I had a MRI, CAT, all kinds of blood work, including one for Lymes. All negative, thank God. This has been the scariest experience of my life. I had never been really sick before. My life was as good as I could ever remember it when I got hit with Labs. It came on so fast and was so dibilitating that I thought maybe I was dying. I will never take my health for granted again. I was out of work for about 4 weeks in total, and I when I went back, I felt I was accomplishing little more than showing up. The anxiety and total sense of helplessness is indescribable. At about month 4, was when the depression really hit me. I thought I was never going to be well again. The depression was caused from having a long-term illness and to make worse, I didn't look sick. I was getting better but, but it was going so slow that I couldn't see any light at the end of the tunnel. I started slowly going back to the gym and getting more active. This web site helped alot, because I felt validated, and not so alone. I started working on a more positve attitude, it impowered me and I started to fight for my life back. I have been taking Ambien and getting more sleep than than before. I chose not to take an anti-depressant but, talk to someone and find out what is best for you. I am taking good quality multi-vitamins, B-Complex, calcuim and ginko. I am staying active, and learnin to accept that if the barometric pressure drops, I may get a bit dizzy again, but not like before. I am getting my energy and humor back. I missed not feeling like me. Laurie and everyone out there - don't let this virus take over your life. Like the flu, it can't be cured. It has to take its course. Most of us are lucky, we won't have this for the rest of our lives. Laurie, you will get better. The fear and anxiety is normal. Why shouldn't you feel this way when no one can give any concrete answers of when this illness will be gone. We have come to expect more from our doctors and forget that they don't have all the anwers and they are only human. (Not unlike our parents, they make mistakes and won't admit it.) ( My folks didn't want to hear about it any more, like it was my fault I was sick.) Stay positive - this too will pass. Robin |
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Hi Everyone. I'm sitting here in tears because I feel soooo hopeless and tired of feeling this way. Does this terrible thing ever go away???? I'm not dizzy 24/7 anymore. that stopped in Decemeber, but I now seem to have daily spells where I feel off balance. when lying down at night and first thing in the morning I get a dizzy sensation which seems to make me VERY anxious. Please tell me I'll get over this and be myself again?? Its now been 5 months and although there are improvments it seems to be soooooo small! I'm sorry I'm just rambling again because I'm sooooo upset and feel like nobody understands the daliy struggles of this beast!!! I did read emmas web page, but was just wondering does anyone else have problems with sleep and lots of dreaming ( more than the norm ) since this problem came about?? Laurie Laurie |
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Laurie - v glad you liked the site. I must say the fact you are no longer dizzy 24/7 after 5 months is a v v positive sign - you absolutely will recover! I am still dizzy 24/7 2 yrs on!!! By now the virus will have gone - it is the damage/inflammation that remains but the brain will compensate. The key is to stay active. Yes this does get progressively better. You can get setbacks such as via a cold or illness but the dizziness will return to where it was before. Recovery is slow but it is happening even if you dont think it is. Sing the guestbk if you want laurie - on the site. Kp smiling! xx |
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• World is “warped” and very surreal. As if looking through the world through odd lenses. This feeling is always there. Particularly prominent in the dark. We liken this feeling to constantly looking through a video camera lense or a fish tank. World feels like a dream also. i read the website and this explains how i feel exactly and that is exactly how the doctor said i should feel. its been exactly 5 weeks and i feel alittle better at times and then i have my bad times. i just hope this will go away. but how u quoted it up above it exactly how i feel EXACTLY... it weird.....but im also very tired....but all my other tests came back negative again so the docotors are almost sure this is what it is..... |
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Hello, guys Laurie, hold on. I agree with Emma 100% on the following: "the fact you are no longer dizzy 24/7 after 5 months is a v v positive sign - you absolutely will recover!" About sleep and bad dreams. Do whatever to sleep more! Laurie, are you taking Ambien for sleep? If not, ask your doctor for it. It's magic - and no side effects. I am still taking Ambien at bedtime. Robin, who has just recovered from labs also takes it. Bad dreams - they can be terribly scary with this illness. Awful nightmares. I am still having them from time to time, I scream at night. Try to say to yourself - "Laurie, calm down. It was just a bad dream, not more than that...." As for anxiety and depression - if you are not taking anything - try to start Paxil, or Zoloft, for example. As I can figure out from Laurie's posts - she does need an anti-depressant medication!!! Laurie, do you hear me?!!! Everybody, stay calm and be patient. Anna |
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Hi Anna, My Doctor has given me Xanax for the anxiety which does help me sleep and clam the anxiety that comes with the labs for me.....Other than that, thats all I take. Thanks for all the reassurance everyone, I soooooooo needed it :) Laurie |
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Just another quick question.....anyone very uncomfortable in the shower...I get extremely nervous in there, I fight with myself everyday :( Hope this doesn't sound to crazy, but I'm afraid in there Laurie |
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one more thing ive heard alot of people brought this up when they are feeling this way am i correct???? i find myself straining looking at the computer after awhile...its like my eyes are straining and im squinting to look at it.... |
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and yes i did have my eyes checked there fine...hahahah |
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Laurie The nightmares I get - partly anxiety and partly inner ear. I also get vertigo at night if I sit up etc - the environment moves badly. The shower - yes - v normal - its because its v enclosed so makes the motion worse for me - feels like a lift in motion or a box hanging in mid air. xx |
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Hey everyone...seem to be having another tough day. I noticed that I don't really get dizzy much anymore, I do in the morning and at night mostly, But I always have like this funny feeling in my head, sounds crazy I know. Is this common with labs?? I have suffered from Anxiety for 13 years, but this Labs has given me anxiety to which I have never experienced before!!!! My Doctor has given me Xanax to help, but it doesn't seem to help the " funny head " feeling. almost like I could get dizzy at any momment, but I don't?? Wondering if its now my anxiety playing tricks on me. any input would be sooooo great :) Laurie |
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The funny head feeling is v v common with labs and do u know when it occurs? When labs is ending and you are compensating and so you are not so much "dizzy in the head" but there is just a "funny feeling" like you describe. You are recovering!! xxx |
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OH Em...you have me in tears over here!!! Is it really true that you get that sensation towards the end of Labs???? OH Thankyou GOD!!!!!! :) Laurie |
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Yes - according to fellow survivors - yes! And Ilia (on my site) had exactly that when she was near the end. I have it on v good days. Keep smiling! xxx |
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Just a message from a person who was unlucky to be sick with labs for a long time. When you are sick for a long time, sometimes you really feel guilty, like it is your fault. Exactly, like Robin said: "My folks didn't want to hear about it any more, like it was my fault I was sick". Maybe, it is true for any long illness, but with labs I am just overwhelmed with this wrong feeling: "I am not optimistic enough, I am not pushing myself hard enough - that's why I cannot recover quickly." Everybody around see that you look "just fine" and your major tests come absolutely normal - so why are you staying at home, why are you complaining, why are you not "cheerful"? Sometimes you really can think bad about yourself, and you selfesteem drops down significantly. This "feeling guilty" is a very wrong and unhelpful feeling in our situation. It is OK to "feel pitty for myself", or "pitty for my family, that they have to deal with my illness" ... But no "guilty feelings"!!! It is not your fault, that you got sick! Laurie - you can use a special small chair for shower. You can buy it on-line or in a medical supply shop. You will feel more secure sitting and taking a shower. I know that many people with balance disorders use it. Chad - when you feel your eyes feel strained from a computer, or TV - immediately take a break and rest until you feel better. Unfortunately visual disturbances are very common with labs and other inner ear disorders. I could not watch TV and work with computer completely for about 3 months. Even now, I need to take 10-15 minutes breaks every hour from looking on the computer screen, because I start feeling dizzy. Scrolling up and down the screen - is the worst part. Anna |
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Help -- I am having a terrible day. The last week I have felt so much better and then today has been horrible Right now I feel like I am going to pass out -- every time I get out of bed/or stand up I feel like my legs are going to collapse and I have an overwhleming feeling that I am going to faint. My legs feel like they are sinking into the ground and the ground seems like it is at an angle. This feeling of faintness seems more extreme than before -- I really feel like I may lose consciousness but I haven't yet. My stomach is also a little off this am. The last day or so I have had a feeling where it seems like a very bad vertigo episode may be impending but it hasn't happened -- I haven't had those since the beginning of this thing -- seven months ago. The weird think is that my body swaying has been better lately -- usually when that is bad everything else is bad. What is going on with me?????????????? Am I going to faint or have a stroke or something worse? Sorry for sounding so pathetic and scared but I hate all of these feelings. |
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Hi Mary.....I too get the same feelings, that I will pass out and Yes I believe it is due to the labs!!! I was just saying the same thing to myself, I was having such a good week and then WHAM this morning I got hit with the feeling that I may get dizzy again, but I haven't!!!! Lets just chalk it up as a BAD day!!! We will get through this :) Anyone seem to fear going out of the house. I'm sooooo afraid!!! Laurie |
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mary dont worry u will be ok its just a ear infection....believe me there is thousands of people that feel like u do your just worried .just sit back and watch tv and enjoy something and it will go away...and breath in a brown paper bag if u feel like your going to pass out it will calm u down....... |
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question for everyone...i know this sickness causes alot of anxiety...i start feeling all around my body thinking i feel lumps and stuff on my head and neck etc....is it just me or after being sick now for like 5 weeks i think im just driving myself crazy..does anyone else have this feeling.....i already hat a ct scan of my head chest etc...i think im just driving myself crazy cause ive been sick for like 5 weeks??????? |
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Hi Chad, I couldn't have decribed it better unfortantly!! I believe it the anxiety 100% I do the same exact things that your doing!!! I have been to the doctors numrious times, the Er thinking there is something wrong. I believe the Labs causes such extreme anxiety that we become hypochonrics. My doctor put me on Xanax ( anti anxiety meds ) just until I get through the labs because the anxiety was soooooo bad! I have suffered from panic and anxiety for 13 years to the point where I wouldn't leave my home, I got myself through that without meds, and lived a very normal life! This anxiety due to labs was just toooooo much and I was like a car in drive with the foot on the brakes just spinning in the dirt. This labs creates anxiety like I have NEVER experienced before! Laurie |
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Hi, everyone, Mary - you definitely had your BAD day yesterday. It can last for several days, unfortunately. Just hold on during these periods! Look, Mary! You did have a good week! These periods will become longer and “better”. If you get extremely nervous and start feeling, like your are passing out, or even going to die, that there is no enough air to breath, do the following. On the contrary: breath "shallow", or better into a brown paper bag (Chad is right). Speak to yourself constantly “Mary – calm down, it will pass, you can go through it…”. Miraculously, it does help to lessen the scary pressure on your chest and throat, and "numb" feeling on your face and arms. For everybody! - Do not allow such a panic attack lead you to ER – it is useless. You are not having a stroke, or going crazy – it is an inner ear disorder, it manifests itself in such a weird and scary way. I have been in the ER three times with panic attacks caused by labs/BPPV. Only on my third (and the last rush) to ER I have learned, that it was “panic”. I found all the information on this condition. Never since that time I allowed this “extreme anxiety”, “panic” (call it “extreme fear”, if you like) beat me. It does not mean, that I do not have anxiety, fears, bad moods or hypohondriac thoughts. Of course, I do - with the recurrences of this dreadful illness. But, I think, I learned how to cope with it. I wish, I could help you more, guys, and myself as well. Anna |
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i know i just feel constantly lightheaded so feel the back of my head and left side is alittle bigger than the right side so i think there is a cyst and its pressing against my head and making me lightheaded and tired etc....im going crazy i just want this to end....im now a hyprocondriac and i never was before in my whole life... |
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the worst part is i just had a ct scan a month ago and they were like everything is fine....im a nutcase..... |
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Chad....I never was a hypochindric in my life. I always was healthy and felt healthy. I really believe its due to the extreme anxiety. I soooooo agree with Anna, talk positive to yourself and tell yourself ITS JUST ANXIETY!!!!! It is distressing, but not dangerous!!!! We will all get through this. On a positive note...Went to Walmart this moring for the first time in months :) Very nervous and felt funny, but I did it!!!! Laurie |
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Thanks so much Chad, Laurie and Anna -- this is definitely a bad bad relapse with symptoms that I haven't had yet. Your advice is great -- I don't know what I would do without you all to calm me down. I can't write anymore now b/c it is making me feel bizarre like I'm going to pass out. Hang in there everyone -- Mary |
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OH NOOOOOOOOOOOOOOOOO, Now I'm scared to death!!!! I didn't know it can get suddenly worse for no reason?? I thought once you started to recover it was nothing but getting better and better????? :( You okay Mary???? I had a bad day yesterday too, but seem much better today. Have you been sick with a cold or something Mary??? Laurie |
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does anyone get the fullness in their ears and I have also noticed that I now puffy bags under my eyes that the worst in the morning???? The fullness is most bothersome when I bend down, but nooooo dizziness. Could it be that my ears are finally trying to stablize???? Laurie |
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ya my eyes are alittle dark under them and they get alittle blood shot also......dont worry its all part of it |
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Fullness in the ears, stuffiness of the nose, red eyes and heavy pressure on the forheard - right between the eyes - are the most annoying symptoms for me at this point. These symptoms are better, or worse during the day, but they are present all the time. Chad is right again : "dont worry its all part of it". Mary - very often in front of the computer I feel, that I am going to pass out, or my head is floating somewhere. If I am at home, I just go and lie down and try to relax as much as I can (no TV, no noises, ask your family to be kind to you, and to respect your illness). But this "almost passing out feeling" in front of the computer often happens at work. So, I close my eyes, hold my head with both hands and try to relax all muscles on my forhead and shoulders while sitting. I am happy, that my kind of job allows me to have this time to compose myself. Laurie - you did it - shopping in Wal-Mart!!! To all of you - Recently, just by acident, I met two peolpe who had all of these labyrinthitis symptoms (terrible, awful, unbeleivable, they said) for 8 to 10 months. For both of them these episodes happened just once in their lives and never returned back. There is hope!!! Anna |
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Laurie - in response to the entry you left on my site - yes there usually is damage if labs continues BUT this does not mean you have it forever! The brain compensates. Damage basically means there are conflicting signals between each ear - asymmetry - this can be compensated for - do not panic! Kp smiling x |
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Hello Labbies, I haven't posted for 2 months now, previously been posting since July 2004 when I first came down with Labs. So I started the new year with new optimism and started back at the gym and walking over the hills near my home. Eating a really healthy diet and thinking really positive. Then one night I woke in extreme pain in my left abdominal side, pain it was so severe I nearly called the ambulance. Then it went and did't return for 2 weeks. During this period I still suffered from the ups and down of my fuggy head. When the pain returned it was time to visit my GP, the following week I really thought I was on my way out. I was scared, depressed and anxious. After several visits to my GP I was eventually referred for some scans. I have a Kidney Stone which will be removed a week from now via surgery. In the meantime my body's blood system is toxic, a chemical imbalance which I am sure is now helping my condition with Labs. I think I know more about kidney's and the vestibular system than most GP's by now. I do have one question if anyone can help. I will have to have general anesthesia for the operation, I am worried, has anyone else had this while suffering from Labs? My may concern is I'll never wake up... its hard enough waking just normally on some occasions with this foggy, fluffy head. Also has anybody researched parathyroid disease? http://www.parathyroid.com/parathyroid-symptoms.htm The symptoms are similar to Labs with the exception of Kidney Stones which i now have. Once my kidney stone has been examined and tested they may look into this further. Although I'm pretty sure I have just had a run of bad luck getting Labs and kidney stone at the same time. Thanks |
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Opps I had a typo above In the meantime my body's blood system is toxic, a chemical imbalance which I am sure is now helping my condition with Labs. should have read... In the meantime my body's blood system is toxic, a chemical imbalance which I am sure is NOT helping my condition with Labs. |
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Just kind of curious....does anyone know if there is a symptom pattern to recovery with labs??? like at first you get the severe dizziness, then unsteadiness, foggy head. i guess what i'm saying is how do you know your near the end???? laurie |
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Hi everyone -- Thanks again for the replies -- today was a little better than yesterday but I can only sit at the computer for a second b/c it is still making me dizzy. Laurie -- I have not been sick. I don't know what caused this relapse -- the day before it happened I did not watch what I ate very much -- I think that I had way too much sugar and salt which can really make things worse (at least I have found that to be the case -- more of a problem with salt than sugar). I also am going to get my period which always makes things worse (sorry to mention that guys!). Also, Laurie and Chad, don't start worrying yet about having this long-term like some of the rest of us (and I know that at seven months I have been luckier than many others). From what I have read, many people do get over it within 6-8 weeks or maybe a little longer than that. You have a good chance of recovering within that time frame or before. In regards to eyes, I almost always have very dark circles under my eyes and when my symptoms are pretty constant, my eyes look completely spaced out and strange. I think that this appearance is "normal" b/c our eyes are doing extra work keeping us "balanced" since our vestibular system is not working properly -- they are very tired! Kevin -- so sorry to hear about your surgery -- you may want to consider reading through the posts at the dizzy lounge (you can google for the actual website name -- I don't have it) -- someone there may have gone through surgery with an inner ear condition -- if not, you can register for free (it's very easy) and then post the question. Hang in there everyone -- Mary |
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Hi Everyone.....Okay now I am soooooooooooo SCARED!!!! Woke up this morning feeling like my ears were plugged and my nose is a little dry and stuffy, and my eyes are always pufffy. anyways I was walking around the house and for a brief second my ears did something really funny and it made me feel wierd. Like I said it was only for maybe 2 seconds. Anyone know what it might be??? I had a sinus infection a month ago, maybe I never got rid of it totally!!!! I sooooooo scared now!!! Can anyone explain that funny feeling with the ears???? Laurie |
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Hi Everyone.....Okay now I am soooooooooooo SCARED!!!! Woke up this morning feeling like my ears were plugged and my nose is a little dry and stuffy, and my eyes are always pufffy. anyways I was walking around the house and for a brief second my ears did something really funny and it made me feel wierd. Like I said it was only for maybe 2 seconds. Anyone know what it might be??? I had a sinus infection a month ago, maybe I never got rid of it totally!!!! I sooooooo scared now!!! Can anyone explain that funny feeling with the ears???? Semms like my ears opened up and they aren't as plugged now after that happening. Laurie |
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Laurie - as for a pattern of recovery - I have asked many specialists this and noone knows BUT from knowing people with this lightheadiness is the final stage instead of dizziness as such. The ear thing could mean you are gettng a cold - happens to me sometimes. xx |
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i was talking to a doctor and i heard with this sickness i dont know if this pertains to any of u but kinda like what i have is that u can just feel lightheaded the whole time u really dont need to have any real dizzy spells...i get alittle alittle quick dizzy if i turn to fast but for the most part im just lightheaded....??? can anyone back me up... |
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Good morning, everyone, Have no time for a long message, but just a short one - for Kevin. Kevin - after I had my first six-months bout of labs/BPPV following hepatitis - A infection, I had two surgeries with general anesthesia (sorry, do not know the type of drugs used, they both were intravenous). I woke up after both surgeries, with my head feeling “funny”, I felt nauseated for a couple of hours, which happens after general anesthesia with the majority of “normal” (non-labbys) people. I did not have any bad consequences of general anesthesia in terms of having another long bout of labs. It happened only many-many years later, with another (hepatitis B infection), when I was again ill with bad - 7 months long - bout of labs/BPPV. This is my personal experience. Mary is right – look at http://p084.ezboard.com/bdizzylounge on the Internet. There are so many great people there with all kinds of experiences. Anna |
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Hi Anna, Thanks for sharing the experience, I'm sure I'll be OK just feel really anxious about general anesthesia, more so than the operation. I have very strange sleeping experiences especially on waking and just hoping that the anesthesia won't make it worse. Thanks again. |
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Hi everyone....I have been having this problem with my ears feeling plugged up for 2 days now. It is driving me crazy!!!!! anyone else have it?? Laurie |
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I had NOOOOOOOOOOOOOOOO idea that xanax would slow the recovery process of labs? I was just reading it on the dizzy forum :( I take xanax for the Anxiety, didn't realize it was helping the dizziness also??? Laurie |
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Laurie -- I think that the feeling of your ears being plugged up is very common. I have this problem -- it comes and goes -- other ear symptoms that I have include a pulsating feeling in the ears, high-pitched whines (although not very often and it only happens for a very short period of time), and I am really sensitive to any noise. Emma's website gives a good list as does the dizzy lounge site. You're not alone. Hope everyone is having a better day or at least able to hang there. I just read a post on the Dizzy Lounge about when people increase their medications. I haven't taken anything for this except meclizine in the very beginning for about a week. Do things like xanax and valium suppress your vestibular system -- I know that meclizine does? Mary |
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How are you feeling Mary??? Was glad to see you post, hoping your feeling a little better :) Your in my thoughts Laurie |
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Okay, Now I'm REALLY REALLY confused!!!! I was on the dizzy message board and was reading that If you have Labs for more than a few weeks its most likely some other inner ear disorder. But every other place I read the say that labs can last MONTHS????? Any feed back on this confusion would be great. Laurie |
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Laurie - ignore the comment you read - I have seen it too - it is inaccurate. Labs CAN last months/years. xxx |
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Thankyou Em....knew I could count on you for the right information!! :) Laurie |
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Hi Everyone....Just another one of my quick questions :) Has anyone ever heard of or experieneced elevated white blood cell count due to labs. I was on a new message board and read some people saying how they had no health problems other than the labs, but had an elevated white blood cell count. I too in the beginning of my labs had a white blood cell count of 18000, which is high, but no fever or being ill other than the labs. My doctor chalked it up as being stress. HUH, wonder if the 2 Viral labs and white blood cell have anything to do with each other??? Laurie |
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Laurie, When I first started having vertigo I had a blood test (I thought it was a blood sugar thing) and sure enough, I had an elevated white blood cell count. However, the neurologist diagnosed me with BPPV. So its either a coincidence or a misdiagnosis. |
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A white blood cell would make sense at the onset of labs...but you'd normally have symptoms laurie... But yes I do think they are linked - the cell count and labs. xx |
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Hi Em and Nikki, That makes sooooo much sense in my case. Doctor couldn't figure out why my white blood cell was elevated. aside from the Labs I was healthy. Em, what do you mean bt having symptoms?? I had every symptom of Labs, but thats it. My GP knew I had the Labs, she is the one who said I had it. Laurie |
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I also had elevated white blood sells level in the beginning of my labs/BPPV. "Stress" has nothing to do with elevated white blood sells level. The latter can be due to some kind of infection that your body fights with. Anna |
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Laurie - I mean that along with a raised white cell count- you would normally have viral symptoms - tiredness, glands up etc xxx |
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white blood cell count up is definitely a infection.....not to scare anyone but if they were way way up then u should be worried about more severe stuff....but for now its not high enought to worry about that its probably a bacterial infection......that should be checked out........if the white blood cell count is normal its usually a viral infectioin...but im no doctor thats just my advise |
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what is bppv |
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Chad: http://www.labyrinthitis.org.uk/bppv.htm xxx |
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Hi everyone; Thanks for the encouragement, Laurie. I'm still in the midst of bad spell -- hoping it subsides soon. I haven't been able to drive or walk very well (except around the house) since Wednesday. My husband and I went on a walk yesterday and I got one of those intense fainting feelings halfway home -- mixture of feeling like I was walking on a boat and air with intense lightheadedness -- I thought he was going to have to carry me. I know that things could be much worse -- but this experience is a nightmare! Anyone who has had trouble walking or driving -- how do you handle it?????????????? Sorry for the venting -- Mary |
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Can soneone please explain what the difference is between BPPV and Labs??? What are the symptoms??? Are the symptoms the same or different??? Boy I'll tell you, the Dizzy Board has sooooooo many wonderful people there, But I think I will stick to this message board instead. For some reason, That Board scares me and makes me more nervous :( Laurie |
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Laurie -- Check out Emma's website -- she discusses both. Hope you are feeling better. Mary |
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In regard to BPPV - I have heard it has tendency to recur within five years of you getting it. Does this mean that it will be coming every couple of years (or less) for the rest of my life, or does it mean that I'll probably get a repeat and then it'll leave me alone? That'd be too much to ask... Does anyone know if it can be sparked off by flying? I'm going to New Zealand in a couple of months (about a 3 1/2 hour flight from Sydney), am I likely to be dizzy all holiday? I am in a bit of a bad mood because two weeks ago I almost felt like my old self and then last week I got a virus. Today, as I am sitting here typing I feel like the chair is tipping me forward. I know I havent had "it" anywhere near as long as some people but I'm bl**dy well fed up with it. I NEVER used to get sick and now I seem to be sick all the time. |
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Hi everyone, I was just wondering.... I have always suffered from neck and tension headaches alot, but I seem to notice that when I get them now, Like right now :) I feel more unsteady off balance on my feet. Is this Common?? Its strange I have also suffered from anxiety for a number of years and one of my main symptoms is/ was an unsteady feeling. I'm wondering if the Labs is on the way out the door for me, but Now after suffering from this Terrible Terrible thing called Labs, If I'm more sensitive to the unsteady feeling and start to panic and worry about the Labs coming back. Does this make any sense??? I'm not really dizzy anymore, no actually I'm NOT dizzy anymore. When lying in bed this morning I put myself into a little test. I turned my head to the left and stayed that way for a few mins...no vertigo or dizziness, Then to the right..again nothing, then laid flat on my back...Nothing, stood up and looked up with my head all the way back...Nothing, bent my neck looking down at the floor, Nothing? Now in the beginning of my labs, I couldn't do any of this!!! now its just the unsteady thing that bothers me when I walk around...not terrible just bothersome. So what do you guys think??? I'm sorry if I seem a bit obsessive, but I'm a very very impapient person when not feeling well :( Laurie |
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The unsteadiness could be left over remains from labs BUT there is also a theory that anxiety can hinder compensation from labs and excerbate the symptoms so the unsteadiness COULD be anxiety if u get me! Im thinking it is a mixture of both - all you can do is relax lots and keep active so that compensation can complete. xx |
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hey everyone i have some good news...but i dont want to jinx myself...its been like 6 1/2 weeks now and i finally have my energy back...still alittle lightheaded but not as bad as i was weeks ago...i hope it is going away.........i see the specialist tommorrow to make sure it is going away and nothing else crazy...wish me luck IT DOES GET BETTER!!!!!!!!!!!!!!believe it or not |
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I get everything your saying EM....You are sooooooo awesume (((((big hugs for Em))))) :) Laurie |
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Now heres the BIG question EM, My Doctor has me on Xanax ( anti anxiety Meds) Will that slow the process of compensating with the labs????? It seems to calm things down, including me :) Laurie |
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Hi, guys Laurie - you said: "no actually I'm NOT dizzy anymore". You tried any position possible, and you can not produce any of the dizziness! (I wish I could say that) You are really on your way to recovery. Laurie - just force yourself to be patient, everything is going just fine for you! Do not read too much on "dizzy lounge" board - it can be quite depressing not only for you, but even for a long-term sufferers, like me. As well as Chad - it looks like he is doing OK. Chad - congratulations. I still feel dizzy in many of head and trunk positions. I really hate walking,let alone standing at one place and talking to people. But I learned to cope. Lately, I definitely feel more energy, and have had less headaches, than before. So, I am quite optimistic. Mary - I completely understand what you mean by having not enough energy for returning from a long walk even grabbing on your husband's arm. It happens to me all the time. I think, that we overestimate our strength and ability to keep our balance for a long time. Especially, when we talk at the same time. I am very sorry,that it is happening to us. At the same time, these walking exercises is the best VRT you can think of. Nikki - I will share my experience with flying later this night, or tomorrow. Too tired after a long working day, and I have to drive myself home (7 minutes of driving - quite a challenge for me - but I know, that I can handle it!). Good luck to everybody. Anna
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I all, just thought I might bore you all with my experiences of various ear problems for the last 28 years! May 1977 I had dizzy spells and panic attacks, my doctor was sooo arogant he didn't care, left me in bed after three weeks and went on holiday, "dont call the surgery because the locum didn't know the erea and wouldn't come out" he said. well I did need to call the surgery and the locum did come out (I am 200 yards from the surgery) he got me booked in to the ent the next day, they diagnosed accute otitis media, I lost my balance for 6 weeks, couldn't stand up at all! Anxiety took hold and I was on diazapam for 10 years! had to get myself off them as no one seemed to be able to help, that was hell. 1984, had a mastoid operation on my right ear, 1996, had an operation on my left ear for a "radical mastoid", my eardrum was in "tatters" and had to be rebuilt my lft ear has never felt right since then. After the op I started having "drop attacks", scared me silly, sometimes they were mild and sometimes they were sooo scary I thought I was going to die! 2004, february, had my dealing with the dreaded labs! what on earth was this? spinning like I was on a fairground ride! had about four episodes of this during the year, went to the ent hospital in february, they told me it may last a week or two, went back to see my audiologist, she said "if I press the side of you ear, does it make you dizzy?" I said no "well its all ok then" duh! I asked her what was wrong with me for all these years and she told me I was suffering from "poorly compensated vestibular hypofunction". went to see my specialist at the ent in december but only got to see his registar, told him I had rocking all the time, felt edgy all the time and had also had four bouts of spinning labyrinthitis, he suggested it might be my thyroid underacting or maybe diabetes, he said that the labs was gone now,duh! "come back in six months" this is my ent department at the qmc in nottingham, as much use so far as a chocolate fireguard. I can see my specialist private it will cost me ÂŁ120 for 15 minutes and ÂŁ30 for any hearing tests I may need!! Luckily I found more informtion on the web, still have very bad dizzies and all that goes with labs, anxiety, bad sleep, nightmares etc , so I will just try to put this monster to rest myself, as hard as it is to do, and keep on getting my help from people such as you on this site and other sites, it helps much more than any doctor has done so far. I wish you all well and apologise for boring you all with this long tale of woe, good luck and good health to all of you. |
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Sorry, just thought to add, my gp thinks its because I am scared of going out! not any other reason, he wants me to see a therapist at the surgery. Guess I'm a lost cause eh? lol |
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Hello, Has any other long term (im at 8 months) labs noticed that it is not when the barometric pressure is either up or down that you have worse times but when it is moving up or down. That seems to be the case with me. It is not a steady (bp) that does it to me but a moving bp. Seems like getting off my dizzi meads has helped me quite a bit. I have a lot more better times and am not as groogy throughout the day. yay. Though I am looking forward to it being completely gone. I do have another question. For some reason I was thinking that mabey the reason that some of us only have the 6-8 weeks is beacue they get the virus and then it heals. But for us long termers it seems like mabey there is a bit of damage that is permanant. Instead of the virus clearing out it left something in our balance system permanatnly broken and we therefore have to take longer and more effort to compensate beacue when the virus leaves the 6-8 weekers there is not compenation problem. The problem is fixed only permanant damage must be fixed or compensated. Well that is my thoughts for a bit. Have a good one. :) |
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Emily - yes the theory is that the 6-8 weeker's have inner ear inflammation only - the rest have damage. Laurie - Hmmm I THINK xanax is fine as it is not really a sedative BUT a way to check is search for it on the net and see if it says "sedative" -if it is - then it could hinder compensation BUT as far as I know all SSRI's dont stop compensation so im thinking xanax may b ok? Mike - If you need info on a specialist in the UK who is TOP NOTCH for balance probs then tell me or emai me at my website (see external links). You are NOT a lost cause! Im thinking all you need is to find a Neuro-otologist. xxx |
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Hi, everyone, Mick - you said "Guess I'm a lost cause eh?" You are NOT a lost cause, I agree with Emma.I read all Emma's posts and visited her website. It looks like doctors at the top UK balance center know the subject very well. If possible, try to get in touch with them - that is the place where you might get help. Anna |
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Oh, Emily - About barometric pressure: It is also true for me: when bp is CHANGING - that is my worst time. When it already stabilized (no matter - high, or low) I feel better. Anna |
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Hey everyone, Okay here goes, I'm really trying to educate myself with this whole Labyrinthitis thing. I have looked at almost every web site, Love Em's web site, very imformative, and have also been on the dizzy board. I must admit I'm still very confused about something. I believe that on the onset of my problems it was most deffinitly Labyrinthitis, It came 3 weeks after a bad case of Bronchitis....Not kidding when I say bad. Not to be to personal, but I had blood in my urine and hemriods, to which I had never had in my life, not even after child birth, Thats how volently I was coughing for weeks so I can just imagine the pressure on my ears. Anyway, 3 weeks after that was over, the nasty vertigo started, but up until then I felt good. Anyway, they say the the norm for recovery from Labs is 6 to 8 weeks, anything after that normally means there is damage, But yet I also hear that it has taken mant people many months to get over Labs...See what I mean, doesn't make sense or I'm TOTALLY misunderstanding????? Can someone please shed some light on this for me and try and explain :) I would soooooo appreciate it!! Laurie |
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Laurie, Here is how I see it. The infection from your Bronchitis spread and moved to youre ear and vestibular system. From there the virus caused swelling and therefore the dizziness. For some people when the virus clears out of that area in the 6-8 weeks or however long then there problems are over and everything returns to normal for the lucky person. For some the virus does such extensiver damage that the healing of the vestibular area of the ear is never fully healed and permonately damaged. For thoes people they have to learn a new way to think. Such as a person walks up a hill for 27 years every day to get to work. If the person lost there foot then they would therefore have to learn to talke that walk every day withouth the foot, and do everyting in a new way there mind so used to doing things one way it takes time and sometimes concious effort to make the new way work. Now it is not as exterme as loosing an appendage but forcing your brain to relearn something is extermely difficut. Somtimes the pressure and pain are unbearable. And when your brain is relearning it takes some of you ability to concentrate on other things away. Er go the speach difficulities, the math hardships, the brain jump in thinking. And then the stress on your head and mind and tension from feeling wierd take a tole on your body an nerves. I have had severe pins and needles feelings in my arems and legs for a bit. But the tension in my neck due to constant thinking rethinking and worry are to blaem. But thanks to the human mind it does eventually learn how to re-think. I have been this way since August 11 2004 and am about 75% better most of the time. I hope this summeer will help bring a 100%. But I have come to accept that it will take as long as it takes. Hope this helps a bit. |
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Good morning, Emily's explanation is JUST GREAT. I am still learning how to "re-think". I have done a big-big progress since the on-set of my fifth labs/BPPV bout in November 2003. I beleive, I am 80% (as an average)back to normal (with ups and downs, of course). I accepted my LIMITATIONS, I am aware, that my recovery will take a LONG TIME. But I am absolutely sure, that I will have great dizzy-free, pain-free and worry-free years in future. Anna |
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thanks everyone for the support....i just went to the specialist and told me she knows ill get better soon...im about 85 percent...i have my energy completely back but im still alittle lightheaded..not as bad but still alittle...i hope that is a sign that i will be 100 percent soon...its been 6 1/2 weeks...im hoping it goes away in teh 6-8 week period...any advise on if anyone knows im getting to 100 percent for sure???? |
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Chad - the high speed of your recovery is giving you a great chance to get rid on this illness completely - 100%. Good luck! Anna |
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Hi Everyone......need some feedback. a month ago I had a sinus infection. ever since then I have had the problem with the ears feeling plugged and when I wake up in the morning under my eyes are all puffy. The puffy eyes goes down as the day goes on, but I have never never had this before. My ears don't hurt, they just feel plugged and I'm always trying to pop them with that opening your jaw thing :) soooooo what do you guys think??? Laurie P.S. I'm also dizziest in the morning with a strange feeling in my head, not that foggy feeling, something else wierd that I can't seem to explain. |
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ode to labs? I may look alright on the outside, you might even think I'm ok, but inside I'm reeling and rocking, and it's with me all hours of the day. My mind and my body are aching, and fighting this evil brings tears, the one thing that stops me from breaking, is knowing it's only my ears. one day I'll succed being steady, and then I can turn round and say, look at me now, I can stand up, without even so much as a sway. till then I will just have to fight, with all of the strength I can raise, I know that I will beat this demon, but it may take a couple of days! I WISH! |
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i really liked that poem that explains it perfect...everyone thinks im fine...like i said im about 80 percent now i have my energy still getting little pains in the head and still lightheaded constantly but not as bad...i went out this weekend and drank and i felt horrible the next morning i think it set me back...(im a idiot for drinking but i thought it wouldnt harm it)...its been like 7 weeks im hoping it i will be 100 percent soon i heard it can take longer than this....my specialist said lab can take a few months i hope not im goign crazy not being able to go out with my friends... |
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is it me or does everyone else feel like we are going to be like this forever?????? |
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Hi, everybody, Chad - WHAT ARE YOU DOING TO YOURSELF? Forget about drinking with your friends for now. Alcohol is a strong poison for you now. You are asking: "is it me or does everyone else feel like we are going to be like this forever??????" It will not last forever. But if you continue drinking - it WILL last LO-O-O-NGER. Mick- I liked the poem, except the last sentence "but it may take a couple of days!" Not true for us - unfortunately.... After 17 months of my 5th (recurrent) bout of labs, I finally started feeling MUCH more energy, feeling MUCH MORE stable while walking and standing. I am still having aches and pains in the ears and head, still very noise sensitive. I have to use Bose noise-cancelling earphones in noisy environments: at the meetins at work, in the restaurants (avoid going there very often), stores, or even at a home dinner with my family (when they are too exited and speak all at once). But I am definitely using the earphones less and less. My progress CONTINUES!!! Everybody, keep smiling Anna |
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Hi everyone: Chad -- don't drink at all until you haven't had any symptoms for a LONG time. I know it sucks -- I can't believe that I haven't had a glass of wine in over seven months -- but you have to be disciplined or it will take you longer to get better. Anna -- very glad that you are doing so much better -- that is great news!!!!!! The increase in my symptoms that came back two weeks ago hasn't left. I'm a little bit better -- but still can't drive at all or walk without feeling like I am drunk and on a boat out at sea, my brain fog came back, fatigue, etc., etc. I've basically been at home this whole time b/c I've felt too bizarre/dizzy/etc. to go anywhere -- fortunately my mom has been here for a week helping me out with my kids, etc. I don't know what caused this -- I guess it is just the nature of the illness -- and I don't mean to freak anyone out -- I think that I just have an especially bad case of whatever it is -- it clears up some and then comes back almost as strong as in the beginning. I liked that poem, too -- thanks for posting it, Mick. Hang in there everyone -- sorry for the vent! Mary |
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i learned the hard way im done drinking till i get better!!!!!!!!!!!!!!!! |
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thats really how i felt the whole time i never really had a dizzy spell...i just always felt alittle weird like lightheaded...ive been to 3 doctors and a ENT and they all told me lab....but dont have to get completely dizzy u can just feel lightheaded and like fatigued and like alittle off balance with getting a complete all out dizzy feeling where the room spins......Am i correct???? |
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i meant on that last email last sentece WITHOUT getting a all out dizzy spell |
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THANK GOD! I am not the only one with this HORRID feeling. I am soooo sick of it. I had labs a couple of years ago and it seemed to take a long time to get rid of it. Now two years later (around same time of year, too) I couldn't believe that I had IT again. I remembered how long it took the first time to get through it and it makes me nauseated thinking of how I am going to endure it again. I am into the 5th week of it and have missed lots of work and LIFE because of it. It actually destroys your life. Sometimes I pass a cemetary and think of how lucky those people are! Scary I know. I have started seeing a therapist because of the anxiety and depression from this monster. After the first time I had labs I recovered gradually but still never felt quit balanced. I went to a hearing and balance center and they ran all those wonderful tests and said that because of the labs it has damaged part of the inner ear and I could get bouts of vertigo - ain't I the lucky one (or should I say we?!?) It is so easy to feel so down. I have been to the ER 3 times with this one since I keep feeling like I am going to passout constantly. I hear the same thing vertigo/anxiety. My question is - did the labs create the anxiety or the anxiety create the labs. I am going through a very stressful time in my life and am not sure which came first. I am considering taking lexapro for the anxiety/depression. I am a pill phobic too so that doesn't help matters either. I am desperate to get my old life back. I am sick of being a prisoner of my body and house! Thanks to everyone for their info and to the creator of this site. THanks a million. I no longer feel aloner. Gloria P.S. I know for a fact it goes away - mine was in remission for 2 years - the aggravating thing to me is that I can't believe I have it again. Knowing there is relief in the end should give me some hope, however, every day is such a struggle. I take antivert for the dizziness and ativan for the anxiety - i still get that weird head feeling though. |
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Hi Gloria, I sure know what you are going through!!! I think ( figures crossed and praying to God) that my Labs is on its last legs. I often wonder alot if its Anxiety or Labs, since ALOT if not all of the symptoms of labs are the same as Anxiety. I got labs 4 weeks after dealing with a very Bad case of Bronchitic and I'm hoping it will be the last time dealing with labs. I soooooooooooo know that " FUNNY in the head feeling" its soo wierd that I really can't describe it. its not that foggy feeling that others talk about, just can't explain it. Chin up because you are not alone!!!! Laurie |
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Hi everyone.....just a quick question. I have been reading alot on the web and ALOT of the sites are saying that a reaccurance of Labs is rare when it was due to a upper respitory infection.....TRUE OR NOT TRUE??????? PLEEEEEEASE say thats true!!!! :) Laurie |
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I would have to agree with you. I had labs then thought it was going away and then had a bad cold and then it seemed like the labs was right back to square one again. I soooo hate it. |
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Hi, guys Gloria - Sorry, that you have IT back. I know exactly how terrifying it is - to be OK for some time and BANG - this monster is back again. I would wish to cheer you up and to say, that this time you will get over IT faster (very possible!) and with more strength and confidence (for sure!). If you could do this once - you definitely CAN do it one more time! I am sorry, that it is happening to all of us, but we are VERY STRONG PEOPLE - aren't we? With great respect to all of you - fellow labyrinthitis sufferers. Hang on!!!! Hugs, Anna
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Hi Fellow Labbies, Just to update you all... I had and operation a week ago, a Ureteroscopic Stone Removal from my Kidney. My main worry was how the General Anaesthetic would effect my Labs, well I'm happy to say it didn't. However during my recovery process, about 3 days after I felt so ill I thought I would die. Think the pain and my head were all getting too much. Well the pain has almost gone from the operation but the Foggy, Dizzy head is back with a vengence. I just want to get back to work and do normal things!!! I'm getting so tired of fighing this condition... I got this Labs July last year and so I have made a mental note that it WILL be totally gone by July this year... this is my goal and I will achieve it. I am due to go to Vegas, Hawwaii, San Fran, and NYC at the begining of June for 3 weeks, and I want to enjoy it. I will get over this Labs, we ALL will get over it! I started to write this note feeling gloomy but realised that it may make others gloomy, I don't want that, we don't need it. I'm sure if we ALL think positive we can fight this together. I'm thinking of ALL of you guys, I know what your going through. Today I'm going to decide when I will be dizzy, not let my Labs decide for me ;-) |
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Great, Kevin! I like your attitude very-very much. Anna |
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Do any of you take antivert or meclizine (sp?) for your symptoms? I seem to have to because if I don't then it seems my anxiety kicks in and I am in real trouble then. I hate to take it because it seems like all I do is sleep. Have any of you been diagnosed with Generalized Anxiety Disorder prior to labs? I know that it plays a big part in the dizzys fo me as well. Mine is more of a constant lightheaded feeling or like my head is the compass inside that little waterball that compasses have. I agree with the person who said that if it hasn't gotten better in eight weeks then it may be depression. Is lightheadedness a symptom of depression. I know that mine is anxiety alot too because I get really lightheaded when I have to talk to someone or go somewhere. It is amazing to me that it can knock you down so fast. I am used to being on the go all the time. I work, go to school, and have 3 kids. I am used to having lots of energy and now I can't go a whole day without a couple of naps. Sorry so lengthy. |
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Just wanted to say - alcohol will nt prolong this - it may make u feel a lot worse temporarily which is why I avoid it but it will not make your problem worse in the long term. Everyone is different too - some people feel fine drinking alcohol even if they have a vestibular problem. xx |
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Helllo Fellow Labbies, I got the labs last July, like Kevin. I am pretty much over it , but when it rains or snows I still get dizzies, but much less intense. I take a low dosage of valium and it pretty much makes the dizzies go away. I think the anxiety is still my biggest problem, the anticipation of the weather change is making me nuts. It's been nine months for me, but as I have been told all along, it will slowly, slowly, slowly go away completely. I'm still fighting the depression attached with the disease, but there does seem to be a light at the end of this long horrible tunnel. I am still hesitant to take an anti-depressant, but I am open discussion. What do you all think. I have noticed that many if not most of the people at this site seem to be from England where the damp weather is a fact of life. Here in the States, we have had an usually wet couple of seasons. Is this a relevant? Happy Spring! |
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Robin, WOW, I was amazed at what you were saying. I live in upstate NY and we just had some snow over night. I had been doing pretty good the last week or so, but the snow came and I'm all out of sorts today!!!! Must be some link to it:) The Anxiety and depression seems to be the biggest hold on me as well, do alot of " what ifing" I'm soooo afraid of getting bad again that it makes me extrememly anxious and depressed. My Dr has me on Xanax which does seem to help alot. she also gave me a script for Lexapro anti depressant, but I'm also afraid to take it, sooooo here it sits!!! :) God you sound sooooo much like me!!! I have always suffered from anxiety, But NOT TO this degree ever!! Never had to take meds and it was always managable, Now with the depresssion....WHAMMO!!!! Laurie |
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Nt sure about the weather thing...weather does not affect me in any way. If the weather effects you it may be that you have some middle ear issues or a more sensitive inner ear. You will compensate in time fully! xx |
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so Em i can have a few drinks when i have a few i feel fine the next morning but when i drink all night i feel horrible and tired for like 3 days?????? |
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bruno how long did your last its been like 7 weeks for me but im still alittle tired after a long day of work and alittl elightheaded but still not 100 percent....????what do u think |
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Just a reminder. Gloria medicinses like antivert or meclizine do help you to not feel dizzy but they WILL prolong re-learning to re-think process. Take them at first. Then only if you have to. |
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Hi All, I'm still here, still dizzy on and off. A few things, To Chad. I have tried Labs with and without alchohol, and can report that a couple of glasses of wine in the evening has no bearing on my experience of dizzyness the next day at all. I still have good days and bad days when I have drunk the previous evening or not. However, I have tried a hangover on labs and that is a definate no no. However, at the great old age of 42, I find partying impossible anyway!!! (poor old thing). However, I do enjoy my wine and find it relaxing sometimes when I have had a particularly stressful day. I am still dizzy on and off, but am finding it really difficult with the residual anxiety. It is hard, when you are having a conversation with someone at work, and all off a sudden you find yourself being'shaken up and down', like you have just got out of a lift. It is particularly fun, when you are a lecturer, like me, stood in front of a class of adult learners when it occurrs. I am finding the internal mantra I have to recite getting really tiring. I also find not 'thinking dizzy' helpfull,but tiring. I am trying to challenge it more and more in an effort to compensate, and that also is tiring. Anyway, I thought that you may all like to know that I have a friend with labs. As a result of it, she had to give up work,and although she still suffers from time to time, she is feeling a lot better. Her enforced work break lead her and her husband to realise that they could survive on one income, and they are now expecting their much wanted baby! Is this the first labs baby we have heard of? I will let you know how she goes,however, when I saw her last week she was having a bad dizzy day, but said to me that it is mainly when she gets tired or hungry. Also, does anyone else have a problem with small loos? I spend my life looking for disabled loos, as a normal sized loo will set me off, either spinning or going up and down! Best Wishes to you all, Kate |
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Hi all: Kevin -- You have a great attitude, as Anna said. I know that I tend to write on this log when I am freaking out about something or really down in the dumps. I will try to be more positive!!!!!!!! Kate -- What do you mean by the up and down sensation/like you are coming off an elevator? I started getting these weird sensation two weeks ago when I got out of bed one morning. I felt like the floor was at an angle and I was walking up hill and that the floor was dropping beneath me -- like someone had opened a trap door. Is this at all how you felt? It lasted off and on intensely for a few days (I could barely get out of bed) -- the dropping feeling has pretty much gone but the angle thing still happens. Re Alcohol: I know that I can't even sip it with whatever inner ear problem I have and I know that it is not recommended for inner ear disorders like Meniere's, etc. based on info. I rec'd. from my ENT's office as well as a few books I have read. I don't know if it prolongs one's recovery but it certainly intensifies my symptoms. However, it sounds like many of you are able to tolerate it -- good for you -- someone have a nice glass of wine for me! Hang in there everyone! Mary |
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Kate - you sound like your improving which im glad about :-) I get the lift feeling - up and down - ground bouncing etc. Chad - as I said it is completely individual about the alcohol - if it makes you worse - dont do it! xx |
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Just wanted to say.....HAPPY EASTER EVERYONE!!!! Laurie |
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Thank you, Laurie. And Happy Easter everyone from me too! |
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Hi everyone.....its been quiet in here?? Everyone okay??? Hey I've been researching Labrynithitis and have read in almost all the sites that its RARE for labyrinthitis to reocurre...is this true??? Laurie |
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Urm, not entirely no but dont want to scare u! It says on most sites on the net that labs lasts 6 weeks but that aint always true either! Generally once yoive got rid of it, you'll be ok, and if it comes back it'll be brief - with colds etc. xxx |
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From what I read and heard, Emma (see the above post) is RIGHT. Do not look at me - I am not a typical example. My recurrent, five bouts in 32 years, labs/BPPV/perilymph fistula (or whatever it is) inner ear disorder is due to at least two types of hepatitis viruses combined with doctor's ignorance and my stupid recklessness. By the way, after 17 months of my latest very tough bout of the disease, I am about 85% back to my normal active life (still no travels, airplanes, gym, no parties with big crowds, less computers, no cinema going – too loud for me). Hugs, Anna |
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well i have had labs for 8 weeks.....i talked to several nurses specialist etc. they said it can last longer than that but the is the normal....im hoping it goes away completely soon!!!!i just learned to deal with it... |
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the only thing that really sucks is that if i go out for awhile at night im tired as shit the next day...it really drains u...but i know i cant die from it so i just try to live with it....TRUST IN GOD....... |
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Yes ur right - the norm is 6-8 weeks and im sure u will get better v soon and be one of the lucky ones as ur well on the mend! BUT it is not abnormal (unfortunately) for it to last a lot longer. Hugs to all xxx |
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Chad, You sound like you like a drink or four. Your lifestyle sounds a little like mine was. I used to go out drinking a LOT and when I say this, I mean 1-4 times a week. All my friends are heavy drinkers and party goers, and its what I have done all my adult life (almost 20 years). It would not be unusual for me to drink the equivalent of 10 drinks. Along with this I would "social smoke", but it also wasnt unusual for me to go through a packet on a big night. At 38 I am starting to have few health issues. Last year not only did I get BPPV/labs/whatever, but I was also diagnosed with osteoarthritis in one knee (and the other one feels like it is going the same way). So unfortunately no more running - I used to be a keen jogger. My gut feeling - and I have not been told that it would make any difference by any medical practitioner - is that the regular massive intake of toxins into my body on a weekly basis has caused both these problems. This has impacted on my life in a few ways. While I am able to have a few drinks now, I am no longer willing (or able?) to go out bingeing like I used to. This has also led to some social isolation, as my friends of course keep on doing what they've always been doing. I have had a few angry feelings about some of them, as they have shown themselves to be drinking buddies and not the close personal friends I thought they were, but that's probably a good thing in the long run. The main thing is, in some ways its been very life-changeing, but really much better for my physical health (as for my mental state...welll...hmmm...not really!). I would have to say that while I kind of miss my carefree party-going ways sometimes, if its a choice between getting sozzled or having no vertigo, I pick the no vertigo any day. This is only my pet theory and my choice, but it could be worth considering. |
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Gloria, I havent ever been diagnosed with Generalized Anxiety Disorder, but after reading about it on the 'net I would say I have had it all my life. I think its also coupled with a social anxiety disorder as well, as I get anxious about talking on the phone, unexpected guests, and feel very awkward in social settings - unless I'm drinking, hence the heavy drinking all my life I suppose. Laurie, although I would say I am pretty much ok now most of the time, I do do a lot of " what ifing" as well. In fact, I have developed a bit of an obssesison over the condition and possibility of it returning. I think about it all day long pretty much, and that ain't right. The other day in a shop, the floor was sloping and I mistakenly felt a like I was getting dizzy again. I got this huge wave of fear rising up in my chest and almost had a full blown panic attack, until I asked my friend if the floor was uneven and she said yes. I started to calm down then, but that's done it for me. I'm going to make an appointment with a psychologist tomorrow. |
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Well its been 8 weeks and 2 days and today and yesterday is the best i felt in weeks....im still feeling alittle spacey and alittle weak but not completely like i was....i hope im getting better it really is a slow process day by day of getting better......does it sound familiar to anyone?????? |
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Sounds good chad - ur a lucky one! For me, its every 6 mths seeing a tiny bit of improvement nt day by day! Good luck! xx |
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Hi, guys Nikki - you are right, that sometimes "drinking buddies" do not turn to be real supportive and caring friends. "A friend in need - is a friend indeed". Forget about them! Think about your health. I have heard it many times already, that alcohol may be destructive for your joints. I am not even mentioning the already impaired inner ears…. Chad – I also, like Emma see improvements only from three months to another three months, but not from day to day, or even week to week. You are doing just fine. Though, think carefully, what is better for you – to be healthier (actually, much healthier!!!) by staying away from heavy drinking, or to badly challenge your body by drinking with some “drinking buddies” who maybe do not care about you at all. Anna |
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u said u have had it 6 months....are u still tired or just lightheaded...im still tired and not up to par as i was....but much better |
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From Anna - Chad - are you asking me "u said u have had it 6 months...."? I have had IT for almost 18 months. I am still not 100% back to normal. I get tired easily, cannot run, or jump, or drive longer, than 15 minutes. But my balance is MUCH-MUCH BETTER, than it was, say, 6 months ago, I have MUCH LESS lightheadedness, headaches are mild and bearable. I am doing a very SLOW, but noticeable PROGRESS. Everybody, do not lose hope! Anna |
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this website has been a huge help to me!!!!!!!!!!!!i know it will go away one day but for now i just wanted to thank everyone casue for those first 2 or 3 weeks i thought i was going to die...... |
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and not to mention im in pittsburgh, pa and the weather is getting better and hopefully so am i...........im going to the kentucky derby and the preakness in baltimore in may....i hope its gone by then!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!it will be like 16 weeks at that time i hope its gone please pray for me!!!!!!!!!!!!!! |
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Anna, I know this is off-topic, but where did you read about alcohol damaging joints? I have been googling "arthritis & alcohol", but not getting anything concrete. Ah the sins of my youth..... Incidentally, I had a blood test and I tested positive to allergies to dust, dust mites and german cockroaches. I suspect the old books - with their hundred year old dust - that I work on at work may have been exacerbating/prolonging my symptoms. I seem to remember reading ages ago that allergies were a risk factor for BPPV. The Psychologist is booked for late April. I seem to have developed heart palpitations now which I know is stress related. Our new puppy chewing up everthing in sight and wrecking the yard isnt helping my stress levels either! Hope you are all well. |
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Nikki, Just several days ago I took my 84 year-old mother to a doctor - specialist in osteoarthritis in Oklahoma. X-ray exam showed, that my mother's right hip joint was severely damaged by osteoarthritis. There were two things, which the doctor asked her first of all: was she taking corticosteroids for a long time, was she consuming alcohol for a long time. She did not. The doctor said, that those were factors, destroying joints. As well as advanced age. Back in Russia, were I lived before coming the USA, medical personnel were also convinced, that alcohol damages not only liver, but joints as well. I never made any scientific search on this matter. Nikki, it is a good idea – to go to a psychologist. As for me, my GP prescribed me Paxil, which was a good choice for me. I was on Paxil for more, than a year – it helped a lot during my worst times. Now, when have I improved drastically (it is safe to say, that I am 90% back to my normal life!!!), I just quit taking Paxil with absolutely no side effects of going off it. I am still taking ½ a pill of Ambien for better sleep at night, because good sleep is gigantically important for people with inner ear disorders. Chad – I am glad, that you are preparing to your normal life and making plans for future. What a joy to finally start recovering from this exhausting and long illness! I know what this joy is like –the whole world is coming back to you. Everybody, stay strong. We will win! Anna |
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Hello everyone :) I feel as if I've gotten to know you all from reading your postings - they have been a HUGE help to me in coming to terms with this condition. Thank you everyone for sharing your experiences and tips! To indroduce myself, I am a 37-year-old mother of three (ages 8yrs, 6yrs, and 18mo.) and I first came down with labs last May. I had never heard of this before and was completely devistated. I just woke up one morning and fell flat on the floor with feelings of the room spinning. I was nausious, scared to death, and unable to move without falling down again - pretty typical first experience, from what I've read... Anyway, I went to the doc, was diagnosed with an inner ear infection and labs, given anitbiotics and sterroids, and sent home. I got better after a few weeks and assumed that was the end of it. Unfortunately, I now have it again. This time I knew what it was, so I was less scared by it, but it was no less debilitating. I didn't get the spins for as long, but I have a strong sense of pressure/fullness in one ear and a slighter feeling in the other. I also feel like I'm on a boat and can't walk without holding on to the walls or furniture. Lights sometimes bother me as do "crowd noises", which is unfortunate because I've been running a childcare service in my home for the past 5 or 6 years. (Prior to that, I was an electrical engineer working on computer control systems for about 10 years.) Needless to say, it's been difficult to continue working under these conditions! If it were not for the help of my mother, who has taken over the business for me for the past month, I would have had to close my business. This may yet have to happen, as she is getting tired of doing it everyday... Anyway, when this bout started, I went to my doc (a D.O.) and she again prescribed sterroids and sent me home. The sterroids (methylprednisolon) helped for a couple of days, but since you take fewer each day of the prescription, the effects wore off and the symptoms returned. I went back for another checkup and she gave me a prescription for another round of the same sterroids. Same result - OK for a day or two, then right back in the same "boat" as before. The third time, she instead prescribed a decongestant and an antibiotic saying I had fluid in my ear and an infection. I took these meds, but noticed no improvement at all. When I went back again, she resorted to a slightly different sterroid (Prednisone) which this time helped for about a day and then did nothing for me. By this point I was starting to get a bit worried (as did most of you from what I've read!). She sent me to get a CT scan (which was normal, I'm told) and scheduled me with a neurologist. I'm still waiting for that appointment, but in the mean time I insisted on seeing an ENT. The ENT gave me a hearing test (normal), checked for fluid in my ears (none) and diagnosed me with severe labyrinthitis from (probably) a virus resulting in permanent damage in both inner ears. He basically said I could get better in a few months, or maybe years, or maybe never. He said there is no medication to fix this. Needless to say, I was stunned! I thought, "I can't be like this for the rest of my life!". I was so upset, I was just stunned. I couldn't even think of any good questions to ask, so I just sat there mute. He did schedule me with a neuro-therapist who will do an "ENG" test and possibly some physical therapy to help me regain some sense of balance. This appointment won't be for a few more weeks, though, and in the mean time I get to see the neurologist tomorrow. From what you've all posted, I suspect the neurologist won't find anything either, but I figure it's worth a try. I've been experiencing the same symptoms you all mention - vertigo (mostly short duration now and not as severe as before), fullness and pressure in the ears, "foggy" head feeling, occasional feeling like stobe lights or someone flicking the frames of a movie (as someone aptly described it here), hot flashes and sweating, occasional nausea, and difficulty concentrating, sensativity to noises and light, extreme tiredness, fear of public settings, and of course anxiety and depression. I also have started getting a little bit of ringing in the ears, but fortunately not very loud and not lasting very long. But enough about me. Suffice it to say, I'm dealing with it as best I can, but it's not easy as I'm sure you know! I have just started trying the Mercurius Solubilis HPUS 15X that someone mentioned on this site (I found it at our local health food co-op as "Similasan Homeopathic Earache Relief") but I haven't noticed any improvement yet. (It's only been a day sofar though...) And I'm considering trying the Ginko, but am concerned about the safety of that while nursing - my youngest still nurses quite a bit! Do any of you know if Ginko is safe while nursing? I have also been reading about inflamation in general, and came across a book by Dr. Barry Sears called "The Anti-Inflammation Zone" which was just published this year. I haven't yet read the entire book, but the gist of it seems to be that chronic inflamation of many types is caused by our diet (high in simple carbs and "bad" fats) which causes our insulin levels to fluctuate. Over time, this type of diet brings on insulin resistance, which then causes inflation in all sorts of ways and obesity. (I'm paraphrasing, as the author goes in to much more detail, but that's the basic gist.) In any case, he says that through proper diet (low-fat proteins, low-glycemic-index fruit and veggies, no caffein, low salt, etc.) and taking fairy-high doses of refined fish oil, we can not only stop this process, but actually reverse it. He mentions heart dissease, MS, arthritis, and other common illnesses, and I suspect inner ear inflamation may fall into a similar category (although he doesn't mention it specifically). I'm wondering if any of you have tried this eating style and/or the fish oil supplements, and if so, if it helped you at all with the labs symptoms? I've blabbed enough for now, but I wanted to let you all know how much you have helped me already by letting me know that I'm not alone and that it's not "all in my head" (ha ha!). Your word of encouragement, and tips and suggestions, have meant a lot to me already. It really helps to chat with someone who understands what we're all going through! Thanks again for your support and take care :) Kindest regards, Jody |
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Hi everyone: Jody -- I really feel for you with three children including a baby -- thank goodness you have your mom to help! Hang in there -- hopefully, your appts. with the neuro. and ENT will provide you with some more info. I do watch my sodium intake very carefully, as well as sugar, caffiene and alcohol (I don't have any caffiene or alcohol at all). I can say that I had some very bad episodes that I think were attributed to way too much sodium before I lowered my intake. I finally decided to start a diuretic -- this is only my second day -- apparently, it takes a few weeks to see if it works. Has anyone else tried this? My MRI (way back in September) did show very slight fluid in my right ear (which is also the one that showed slight abnormalities on my ENG test). I have no idea if it will help at this stage but I'm going to start trying everything. Hope everyone is doing better -- great news for you Anna -- so glad that you are at 90%! Mary |
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I was struck by Lab on December 24. I am now, after 12 weeks back to work part time. I don't know how anyone can work 8 hours. I was thrilled to find this site as I was so worried about so many of the symptoms that I am dealing with. I haven't read this third site, but will! Thank you for being here! Kay |
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KAY how do u feel...i have had if for 9 weeks and it wont go away....i still get tired after doing something for awhile...and still feel spacey in my head...it sucks i have good days and bad days...it can last forever but it sure feels like it could..... |
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i meant IT CANT LAST FOREVER |
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does anyones eyes get blurry alittle for like a second or two frequently..... |
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u want to know the weirdest thing i had this spacey feeling (labs) about 4 years ago it lasted 4 days, i also had it about 2 months after that it lasted about 2 weeks....now i got it 3 years later and its been 9 1/2 weeks....... |
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Hi, everybody, Chad - it CANNOT and it WILL NOT last forever! Maybe, it will last longer for you this particular time. I know many people, though, for whom it just stopped at some point of their lives, or it became easier, or much less debilitating with years. Kay – you are working part time – it is already some progress! You will be feeling better at work, and you will be able to work more hours a day without being completely exhausted (believe me, it WILL happen!). Those first several weeks of part time working after five months of total disability were very tough for me personally. I am doing much-much better now, and I am working a full day. I even have some strengths to go to Wal-Mart for grocery shopping after a short rest after work. My movements are still slow and cautious, I ware noise-canceling earphones in noisy places, but I am able to do these simple things already! Jody – my heart is really broken by you story. You have three little kids! Thanks God, your mom is with you! You know, from the beginning of my long fight with this inner ear disorder, I was very reluctant to admit, that I got sick. I tried to convince everybody, that I am OK, that I can handle my situation. I tried to do everything that I used to do, with the same rate – fast, productively, energetically, joyfully. It was very stupid from my side not to listen to my body – one day my body just refused to obey my mind, I gradually became totally exhausted physically and mentally and I went strictly to bed for more, than five months. I just want to say: DO NOT REFUSE TO GET HELP from your family, friends, co-workers, doctors of all kinds (except those who advice questionable or risky treatments!). Jody – about you question on low-carb diet. Yes, I have heard from people with inner ear disorders, that some of them are very sensitive to excessive sugar and carb intake. Some of them literally start spinning after they eat a piece of cake, or ice-cream, or a couple of doughnuts. This is the FACT! But how to explain this fact – that is the question. Either inner ear tussues become inflamed, or inner ear fluids are somehow effected – who knows… There is a good website dIzzilounge.org. (http://p084.ezboard.com/bdizzylounge) Many people on that site share their problems on inner ear disorders, ask questions and discuss possible medications, or diets to ease their condition. Visit this website – you will not regret. I remember, there was one active guy there – his name was Rick. He made a lot of research on how sugar and carbs can affect our bodies, because he personally stays away from these substances, because they make him dizzy and sick. I do not remember all the details about Rick, but there are many other people on this site who would definitely admit, that sugars and carbs would make their inner ear condition worse. Hugs, Anna
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Question to Jody - Did you have any bad side effects with taking steroids. My friend from Canada told my terrible things, that was happening to her when she was taking prednizone orally, ot interferon shots. I personally never was prescribed steroids and did not try them, of course. Anna |
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Hi all, I've been dropping in on this site since I was first diagnosed with labs back in November 04. Like most of us I've still been getting symptoms. However I've come to the conclusion that at some point my labs was actually cured. I only had the vertigo dizziness for the first 3 weeks. Since then I just got the light headed/walking on marsh mellows type feeling. The reason I'm still getting symptoms I think is anxiety. Whilst my labs was really bad the worst symptoms for me were the anxiety/panic attacks that accompanied the vertigo. I've no doubt that the majority of you still have an inner ear disorder, but I think some of you might be similair to me in that the labs has actually cleared up but what your left with is an anxiety disorder. Check out http://www.nomorepanic.org.uk/ and look in the symptoms section. You'll be surprised how many symptoms you have in common with anxiety sufferers. I've realised that I'm now just suffering from anxiety, no doubt a hangover from the dreaded labs. As for me, I'm now back at work full time. Back in January I could only last a couple of hours before I had to leave. Yesterday I did a 13 hour day! I've just come back from a skiing holiday. Took a bit of courage to go but really glad I did. I'm pretty much back to normal now. Couple of months ago I really couldn't see my life getting back to normal. Now it pretty much back to normal apart from the anxiety that occasionally rears its ugly head but I know what it is now so I'm starting to be able to control it. Anyway I hope some of you find this useful. You will get your life back so hang in there! Hugh |
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Hi all, I can't believe it, I am going down with another cold, the dizzyness is becoming intolerable again. I really was beginning to feel better. The residual anxiety is awful. I am starting to think that this is never going to go ...8 months in, I had to leave a lovely dinner tonight that friends had cooked. My daughter said I was terribly rude, I feel mortified. I just had to get out, in my car, one destination..bed! This wretched virus has destroyed my confidence. I am starting to think that I am really post viral, good days and bad days, a terribly upset tummy when it strikes, wobbly knees and shakes. The worst thing is that I cannot stand and hold a conversation with anyone, or I start getting dizzy. Has anyone else experienced these type of symptoms, or is it time to go back to the docs and start again? Kate |
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Kate -- I have experienced the same symptoms -- when my symptoms are bad, I cannot stand and talk with anyone -- even my kids and husband. I have to go get into bed and close my eyes. I think this is very, very common. My stomach will also act up and my legs will feel weak from time to time -- among other symptoms. I also have had this for 8 months and have had the same ups and downs -- many times I thought I was on the road to recovery only to be back to square one. After a fairly bad three/four weeks, I called my doctor and he is starting me on a diuretic to see if it will help by getting rid of excess fluids. I am on day three of that -- apparently it does help some people -- I hope that I am one of them. I have tried to not take medications during this thing b/c I did not want it to affect my compensation. BUT those days are over -- now if I have a very bad day, I am going to take somethine to help me get through it (hopefully this will not happen very often). But I need to be able to function at a minimal level (pick up kids from school, etc.). Hang in there -- we will get better!!!! Mary |
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Kate - sorry u r feeling so rough - I know how it feels as have had flu and still feeling ropey... Hugh - I must say the residual symptoms you describe are prob lab symptoms and nt anxiety - yes they may resemble anxiety but the fact is labs does not go away quickly and it is v common to be left with lightheadiness/spaciness rather than dizziness at the end of labs. I have a hard time believing the remaining physical symptoms are anxiety when you have had a labs problem. The main thing is - ur getting better :-) xxx |
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HUGH And to add: Labs can cause anxiety and this can linger after labs (but im nt really talking physically as in dizziness). The main thing is anxiety can hinder recovery from labs but the remaining symptoms of marshmallow feel/spaciness are FAR more likely to be labs related than anxiety. The fact is labs DOES end vertigo wise but then goes into a low level (or high) imbalance/motion feeling - for many. This is the v nature of it and I'll put my money on that your remaining symptoms are left over labs. In time - you should compensate fully. And in the meantime, getting the anxiety under control with CBT etc is a good thing as you will reach 100% quicker. Hope this helps x |
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Hi, labbies, I AGREE WITH EMMA!!!! Of course, we all have a little, or a lot of anxiety with labs. But these leelings of imbalance and motion are definitely remaining physical symptoms of labs. I am sure 100%. I am not an anxious type of person. Also, I could closely watch my own self recovering from labs for five times (already) in 30 years. I always had the described feelings, they would get less and less intensuve gradually, and they would disappear with time. They are NOT total anxiety -but they CAN CAUSE anxiety. Anna |
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Hi everyone.....I'm scared to death!!!! I have been doing really well with my labs, its semmed to have calm down alot, but here is the problem...I woke up this morning with a sore throat and chest congestion....does this mean the symptoms of labs will come back??? I'm sooooo afraid I'll go back to square one!! Please give me some feed back :) Laurie |
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Laurie - try to calm down! Your fears go far ahead of your real situation. You said, that you were doing better in respect to your labs. You will steadily move towards your recovery, and even a cold, or flu WILL NOT REVERSE your progress. You might feel somewhat down for a while, but as soon as your body recoveres from the sore throat and chest congestion, your recovery from labs will continue. Do not be so much upset in advance. Keep hope, everybody. Anna |
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Thankyou Anna.....I soooo appreciate you taking the time to explain. It was just such an awful feeling in the beginning that it scares you, not to mention the anxiety of a relaps. Thankyou soooo much again :) Laurie |
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Anna...i like to hear that advise when i first had it for the first 3 weeks i had real lightheaded attacks and stuff now 9 1/2 weeks later i have remians i think of lab....i am just alittle lightheaded and feeling alittle weak.....i guess this is the slow process of getting better?????????? |
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it seems like i do something energetic for like 10 minutes and i have to sit down im tired as shit for a few minutes |
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Hello everyone - Thanks for the nice comments and support! It really helps :) Anna: Yes - I did have some side-effects from the sterroids, but they were minimal, with the exception of the crazy dreams. I would wake up feeling "spacey" and surreal from having the most vivid dreams of my life. Apparently, (as I found out from my doc later) hallucinations and/or vivid dreams are not uncommon! She told me I should stop taking the sterroids if I get those symptoms, but by then I had finished the prescription anyway. Anna: Also, thanks for the mention of the "dizzylounge" website - I'll check it out :) I've been trying to reduce my refined sugar intake anyway, but haven't yet fully tried a low-card diet. I really don't think the Atkins diet is healthy personally, so I don't think I could go on that kind of diet. The "Zone" diet seemed to me to be much more "reasonable" in that it didn't eliminate carbs, but reduced them somewhat and made sure that they were eaten in combination with protein to reduce the insulin spike and drop. Interesting that others find sugar and carbs may contribute to labs symptoms - maybe it's somewhat related to diabetes? update: I visited a really good neurologist Monday and he did a much more thorough exam than the ENT did, and he was also much more knowledgable about labs and related disorders and explained a lot of things to me. He was also MUCH more encouraging that this can be improved. (yeah!!) He referred me to get several tests, ENG and "peripheral something or another" (I forget the eact name of it) as well as a complete blood count and thyroid check. He said that thyroid problems could also contribute to the labs symptoms. He also found that my heart rate was very high, possibly due to the high dose of Zoloft I've been taking. He thinks that could have effected my labs as well. I've been reducing the Zoloft (since you are not supposed to go cold turkey on it) and my heart rate seems to have gone down again. I had no idea it was so high! I wonder it that could have caused the "hot flashes" and "sweating" that I experienced occasionally? He prescribed Meclizine to reduce the dizzy/wobbly feelings, which I reluctantly tried for a couple of days, but I didn't find it to help with the symptoms at all. However, it did make me and my nursing child very sleepy! (which wasn't all bad, truth be told *g*) Does anyone else find this to be the case? The neurologist also noticed that I had a tendency to very slightly hyperventillate when I felt the dizzyness come on during the testing, and I also blinked a lot. Although he admitted the hyperventillating was very slight, he said that even that much could increase the dizzies. He suggested that I work very hard not to breathe too deeply when the dizzies start, and that I also try to keep my eyes open wide and not blinking during the dizzy moments. He said to focus on a stationary object, such as a picture on the wall, and sit down in a firm chair and press my body into it to make sure my senses realized that I was sitting and touching the chair. This can help "retrain you brain", I guess. Sofar, I have't noticed huge improvements from any of these techniques, but with practice they may start to help. I'll share more of what I learn from these other tests in hopes that they may help some of you too. Meanwhile, thanks again for the support and take heart from knowing you're not alone in this! (I sure do!) Kindest regards, Jody |
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so are u saying on that website that the virus only lasts 3-8 weeks but the after effects can last alot longer like what i have?????? |
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jody i find my heart beating faster after i do anything also..i think that is common am i correct anna or whoever would know?????????? |
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hi everyone what a wonderful site,just amazing how many off you there are.Thought i was the only one,mine started in october 2004.Woke up in the morning looking up at ceiling noticed that it was spinning slowly,closed my eyes for a few moments then opened again and it had stopped.Got out of bed felt like i was walking to one side,it went off after a few mins so just ignored it.then a few weeks later whilst driving i went in to dip in the road,and felt that i went sideways and back.So to the docs I went told him what had happened and after a few tests heart,bloodpressure e.t.c he said i had an ear infection.He gave me no medication as he is the old school type and wants the body to fight itself and sent me home.Then a few weeks later i noticed that if i was sitting down on ocassions and moved my arms i felt i was being pulled backwards and from side to side.I also have had all the other probs you all have had, except apart from the first morning I have not had the full spin just a slight movement.But all the time i am doing something i dont notice the balance,soon as i stop to relax i feel the feeling of being on a boat.I also have had Numbness,dreaded fear,freezing legs,like ants crawling up the back of my head,feeling like my ears are blocked,but you all have said the same and i really do feel for everyone of you because unless you have had these things happen to you,no one can comprehend what strange feelings we get.I have been married for 27 years and my wife looks at me like i am speaking a foreign langauge when i try to explain these weird feelings.I only noticed this web site last week,and since seeing all your comments I can now move on and beat this,knowing iam not the only person.Sorry to go on a bit but you lovely people all no how i feel,But my question is i have had neck ache and stiff muscles in my back ever since it all started,is this tension or is another one off its suprises.thankyou for listening paul. sorry for any spelling mistakes trying to do this as quick as i can. |
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paul i have stiff neck and that also its all part of it dont worry.. |
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Thanks chad for your quick response and answer,I just really wanted reassurance from someone else,as it normally gets worse when I am really wobbly or have to go out. once again thankyou. |
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My contribution of symptoms: Labs started approx 2 months ago after a weekend cold. had one big attack about two weeks into it where I woke up and the room was spinning. That lasted about 12 hours. My symptoms have evolved over the two months. At this point I am spacey w/ a constant light dizziness. Other "fun" symptoms: Labs get worse late in the day (more fatigue = more labs = more fatigue, etc.) Loud noises cause discomfort/chills (this started about 2 weeks ago) Feet feel heavy when walking (started about a month ago, has gotten better) Anxiety + headaches when trying to fall asleep (this anxiety reminds me of the feeling of coming off an antidepressant) Labs exacerbates my vision problem of having a lazy/wandering eye My patience with labs is running very thin. The most frustrating thing about it is that you can't measure it day to day, because of unpredictable relapses, i.e. last week I had a couple days almost free of symptoms but then it kicked back on. Today I am going back to the Dr. to see if I should/can be doing any vestibular rehab programs. Good luck to everyone. |
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wnb let us know what they say |
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Paul – stiff neck and shoulders is a common symptom with dizziness and imbalance. It happens, because you try to keep your head straight upright to prevent dizzy spells.You try to keep your body balanced almost all the time. You apply gigantic efforts to these things, which you took for granted before, when you had a healthy inner ear. Your muscles are really tired and stiff, because of these constant efforts, often you have a heavy feeling in the legs, in the head and in the whole body. I understand exactly what you talk about. It makes a lot of sense for me. My husband of thirty years does not have a clue how poor I am feeling. He says: “Just relax your body, grab on my hand tighter and let’s walk faster!” If I try to do so, he has to carry me home half-dead after just a short walk. Now, after many months, I am much better with walking and all other “simple” things. Jody - crazy and vivid nightmares as well as “hot flashes” always happen to me during the worst time of my labs bouts, although I NEVER took steroids, or Zoloft. I took antidepressant Paxil for a long time, but it never caused any of these symptoms. It is labyrinthitis, which is responsible - I know it for sure from my long and bad experience. Anna |
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no one responded about the heartbeat....it beats faster or harder after not doing much maybe a short walk or something |
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Chad - my heat beats especially fast, when I am tired and fatigued, I am sweating like a pig. We are all very much stressed, anxious, tired, fatigued and weak most of the time with labs. Why would our poor hearts beat normally? All these symptoms come with labs, unfortunately. Everybody - On the website dizzilounge, it was an interesting question and discussion. The question was - "What your body part is the most affected by your inner ear disorder?". Many people admitted, that HEAD is affected the worst: it means headaches, sometimes unbearable, heavy feeling in different parts of the head, "fullness and bloating in the head". Some people said, this is their STOMACH, because they feel so nauseated. Some people said - EYES and VISION, because they cannot concentrate their eyes, their vision is blurred, etc. Many people admitted, that their EARS feel really bad - fullness, ear pain, "watery" ears. Somebody said, that he,or she has real problems with stiff MUSCLES and aching JOINTS especially in the end of the day. And finally, almost everybody said, that their MIND was in trouble - poor concentration, bad memory, "brain fog". All these problems in different systems of our bodies are caused by a little thing in our heads - THE INNER EAR. Such a shame, that many doctors do not have a clue about these symptoms. They should be invited to have a look at our sites!!! Anna |
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Chad and all: I get the same heartbeat problem -- I am SO glad that you brought it up -- I thought I was the only one. It has been happening to me the last week especially. My heart beats strongly and more quickly after even the slightest "exercise" -- like going up the stairs in my house -- how pathetic is that???? I am an ex-athlete but feel like a 90 year old woman. When my symptoms subside a little, then I don't notice the heart beat thing nearly as much if at all. As Anna said, it is probably a normal reaction to everything our bodies are going through. Also, I have been totally inactive for the last month b/c of all of this and I'm sure that is part of it. Also, my pulse throbs in my ears sometimes -- I guess b/c they are plugged up and/or the inner ear is inflamed so I can actually feel the throbbing in my ear -- any one else get this?? Mary |
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I forgot to ask: Has anyone tried a diuretic? I have been taking one since Sunday. Wondering if it has helped anyone. Thanks -- Mary |
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CHAD - do you mean my website as in the 3-8 wks thing? Basically the virus that causes labs is only there for say 3 weeks. 60% of people who get labs have inner ear dysfunction from labyrinthitis for 3-8 wks, 40% have it longer like me. It is the dysfunction (damage) which remains not the virus. Also CHAD - the heartbeat thing is anxiety - I get it. MARY - I have taken dieuretics for this but only when I am on my period as my specialist said it would help with inner ear fluid levels. It DID help with reducing dizziness during my period but it did not help the dizziness overall. A dieuretic will only help if you have menieres. Labyrinthitis does not cause excess inner ear fluid. But I cant remember your exact diagnosis? xxx |
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My Doc (after having me wait an hour) is referring me to an ENT and an Opthamologist. His theory is that my wandering eye and labyrinthitis are very much enjoying each other's company, which is why labs is still sticking around. FWIW, I have also had the throbbing pulse in my head a couple times since aquiring the labs curse. It didn't strike me as that big a deal b/c it happened once every blue moon before labs too. |
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Chad - about quick hearbeat - I think it can be anxiety as well, like Emma said, it can be BOTH ANXIETY AND WEAKNESS because of lack of exercises and because of over-stressed muscles. Mary - I prescribed diureticas to me myself - just to try. I have been taking one pill per day for about two months. I did not notice any difference. Still, I am on my rough way to recovery. Probably, about 85-90% of my old, active, normal self. Anna |
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That's interesting, Emma. My MRI (way back at the end of August) showed a small amount of fluid in my right ear (which is the ear that also showed slight abnormality on ENG). I was diagnosed with labs/vest.neuritis by my ENT. Anyway, I should have tried the diuretic at the beginning but my ENT didn't push it and didn't explain how it could help. Now I am trying it. Too soon to tell. Have you found that salt/sugar intake affects your symptoms? I know that it does with Meniere's -- which I am beginning to think that I may have and/or BPPV (I'll save that for another post). Thanks for the replies. Mary |
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Thanks Mary and Emma, I feel like I am going around the bend! Day in, day out, this just gets so wearing. Before this started (last August) I used to drink like a fleetstreet hack, smoke, work all hours God sends..you have no idea. Now I am a non smoker, don't drink in the week at all and indulge very moderatley at the weekends, eat my five portions of fruit and veg, take suppliments and Ginko, sleep and try not to overwork.......and 8 months down the line I feel worse than ever! There is not a single day that goes by when this doesn't strike at some point during the day. I started work at 7.30 this morning, finished early at about three and decided to take myself off for a bit of well deserved retail therapy. One shop later, I was spinning and feeling so sick that I had to come home and sleep for 2 hours before I even had the energy to cook my tea. This is so frustrating. I supose that the positive is that I have had to change my lifestyle, but HOW much longer will I have to put up with this? Yesterday, I massaged my neck under my ears, and I could hear them 'squelching' inside my head! Do you think that this is still V.L.? I am starting to worry I might have M.E. or something like that. My friends tell me that I don't have an M.E. 'personality'. (whatever that is). However, I have never felt so neurotic in my life. Constantly fatigued, dread things I used to enjoy, can't stand crowds, small places, large places, loud noises. Feel like I'm cracking up. Back to Docs again next week I think. Thanks for all your support on here, and Emma and Illia, or I think I might have lost the plot by now. Kate |
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Anna Thanks for explaining it to me.I have just made no asked my wife to read some of the postings to help her understand what we are going through.And yes chad my heart does beat a bit quicker,and boy after one of those weirds dream in the middle of the night wow.what i try to do is wash the car, even when dizzy because you can hold on to the car as you wash it just to get a little exercise.its not very pleasent but you must try to continue to do what your used to, as my doc who probably has never had this condition said to me. Chad Cheers, Anna God Bless. By the way I did not mean wash the car in the middle of the night, even though it would mean I wouldn't have to suffer the boat sensation in bed. |
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Hello again :) This is such a great, active group! Paul: I agree about the stiff neck and shoulders - I find myself "stiffening" up when I try to walk so that my head doesn't move too much. The neurologist said that I should try to maintain a normal, natural posture, but how can you do that when you don't feel normal? Anna: I'm glad to know that you had the same symptoms (vivid dreams and hot flashes) without the Zoloft. I've been taking it for about 10 years, and never had those symptoms before, but assumed it was because of a relatively recent increase in my dosage. However, the neurologist said that with my little one still waking in the night to nurse, I'm not getting proper sleep, which can also exacerbate the labs symptoms. (Is there anything that DOESN'T make them worse?!? *g*) Kate: I hadn't even thought that the "squelching" I hear in my ears was related to the labs! I've been having that symptom too, and was worried that I might have a bit of TMJ. I get stiff jaw muscles as well, particularly on the side of my worst ear, but that also may be from poor posture from compensating for the labs. As to your feeling tired and dizzy after going to only one shop, I totally understand that! I can't even go to one shop! You're not crazy :) I wish I could answer your question about how long this stuff lasts, but I'm still trying to figure that one out myself. From what I've read, we're (hopefully) on the mend, since we're not having full-on vertigo anymore, but the "rocking boat" symptoms and others seems to last indefinately. For some folks, longer than others. The best info I have at this time is to get as much rest as you can, eat healthy, try to stay active (within reason) and see if the docs can offer any therapy to help you cope with the balance troubles. The only other thing I can suggest that really helps is reading the postings here :) Thanks again everyone, and stay positive :) Jody |
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Another thought : Kate: You said you are "Constantly fatigued, dread things I used to enjoy, can't stand crowds, small places, large places, loud noises. Feel like I'm cracking up." I think we can all probably identify with those feelings. Some of them are probably due directly to the labs, and others more to the anxiety and/or depression resluting from dealing with labs. Have you considered trying an antidepressant or anti-anxiety medication? Just a thought. also, what is "M.E."? Mary: I believe that I'm starting to discern a pattern that salt/sugar intake affects my symptoms of labs. I've only started noting it in the last week or so, but I'll keep watching to see and let you know. I do remember reading that for folks with fluid in their ears, eating much salt can be a problem. The diuretic should help, as should drinking a lot of water - counter-intuitive, perhaps, but I'm told that having more water in our bodies not less can help flush out excess fluid buildups. As to the Meniere's, do you have those "drops" episodes? From what I've read, that is very common with Meniere's. I hope you don't! I'm glad I'm not the only one who has been questioning my sanity lately :) For what it's worth, though, a counsellor once told me that only the sane question their sanity. In our cases, I find that reassuring *g* Take care - Jody |
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well its almost been 10 weeks and havent went way but have been feeling good these last few days......this Freaking stupid spacey feeling wont get the hell out of my head....i just wish it would go away this sucks....i feel fine other than this damn spacey feeling in my head................. |
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KATE..... believe me im 26 years old i was the same way...i love to golf, drink alot, (i dont smoke) go out all the time run on the treadmill lift weights.....all up till jan 31st i quit...i drank wed-sun woke up monday morning and havent been right since jan31st...its been almost 10 weeks....and im just spacey and weak....it seems like its getting better sometimes then it comes back again...its sucks sometimes i get so frustrated i want to just flip out...i know a lady at work that had it hers lasted 3 months....but i have never had the true spinning just lightheaded so i dont know if mine will last longer or not....im going away in may i hope it goes away...cause when i drink now im in bed the whole next day even if i only have about 6-8 beers. so i quit drinking until may to see what happens if it doesnt go away by then im going to say screw it and just drink..I FEEL LIKE SHIT NOW WHAT THE HELLS THE DIFFERENCE IF I FEEL DOUBLE SHITTY!!!!!!!!!!!!!!!!!!!!!!! |
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TO EVERYONE STAY OFF THE ANTIDEPRESSENTS THEY ARE NOTHING BUT TROUBLE!!!!!!!!!!!!! |
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Thanks for your comments, Anna and Jody, and everyone else. Thank GOD for this site -- last night I was ready to crack up -- I completely lost it emotionally -- my poor husband and kids!!! But then I went online and read some of these entries and felt much better -- even laughed out loud -- some of you guys are pretty funny which I find impressive b/c I can barely write anything that makes sense on here sometimes let only make a joke! Should I keep taking this diuretic? I am very thin naturally (very high metabolism) and feel like I have been losing weight every day on this diuretic -- is it worth it?? After a week, I look emaciated. Did the diuretic make anyone's eyes sink in? Is that from water loss? I also have no idea if my diagnosis was correct. I think that I was having symptoms of BPPV for the six to nine months before this whole thing started. A few times (during that period) I had very bad vertigo spins when I woke up for a few days but then it would go away and felt like I had the flu, etc. Now I am wondering if it is BPPV -- is an abnormality on your ENG consistent with BPPV?? or is that more of a labs thing? Also -- I have alot of the symptoms of Meniere's but not hearing loss. No drop attacks but not everyone gets those -- nor does everyone get hearing loss. It is all so confusing -- I just need a good doctor who takes the time to really listen to my history and gives me a thorough explanation for all of these ridiculous symptoms. Mary |
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mary laugh out loud believe me anything that makes me laugh anymore is great...since our lives suck so bad right now....but this will be a great thing to look back on when we get over it..just think of how much we will enjoy stuff when this shit gets over with....it sucks.....i get tremors, heartbeat, headaches, weak...i got it all it sucks and thats the bottom line....EVERYONE THINKS IM CRAZY EXCEPT US ON THIS DAMN WEBSITE!!!!!!!!!!!!!!!!!!!!!!!!!!! |
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by the way who else gets tremors like me ive had them for like a 2 days.....but no one else can feel them there inside my body |
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Chad hang on in there,you must be positive it will get better drink is not the answer.I also stopped work on 21 jan and i am self employed money is nearly all gone.I am a 45 yr old man scared stiff of being on my own in the house when my wife goes to work.just in case something new happens,when at work I used to deliver washing machines sometimes to 1,2,3 floor flats with no lifts.Since getting this monster I have lost 60 percent of my muscle,I feel so useless and as weak as a kitten.this is what it does to you,after so many weeks with lab it makes you think your never be the same again.2 weeks ago if I did my exercise of closing my eyes and standing on one leg I would fall over in 2 seconds, now it has increased to 20 odd seconds so my brain is retraining so it must be getting better.So just keep telling yourself you will be ok. Anxiety is also a problem slowing recovery,but as I have since found out on this web site,we are definately in very good company. Good luck. |
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yes chad a sort of buzzy sensation in side but mainly in the morning when first get up.Also muscle twitching everywhere,and then this feeling like I am be strangled but this is me being anxious so doc says. |
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Hi everyone....just an update. was doing really well recovering from the labs, doctor put me on xanax ( anti anxiety meds) which for some reason has helped a great deal!!!! anyway, 2 days ago I came down with a head cold and now my ears are soooooo plugged up!! It is driving me NUTS!!!! I hate that feeling and now I'm afraid of a set back with the labs. No infections or fuild in the ears, but tons of nasal congestion....what do you think my chances are for a set back??? I'm thinking my ears will pop when I get rid of the nasal congestion....what do you think? I know it sounds sooooo stupid, but that plugged feeling is driving me NUTS!!! :) Laurie |
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I get a good head buzz once in awhile. My biggest enemy is probably fatigue. Even like after eating lunch, the normal food coma becomes a lot less pleasant because of the labs. My new theory on the "heavy feet" phenomenon is that your head is overly depending on the nerves in your feet to tell it how to balance (since it can't rely on your inner ear anymo'). |
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Chad - EVERYONE THINKS IM CRAZY EXCEPT US ON THIS DAMN WEBSITE .!!!!!!!!!!!!!!!!!!!!!!!!!!! Pay attention to the following Jody’s notion: “a counsellor once told me that only the sane question their sanity”. A person who is really “out of his mind” would not question his sanity…. Refer you friends to this well-known postulate, first. Second, try to explain to your friends and relatives, that your inner ear (balance system) is affected by virus. It also affects MANY SYSTEMS of your body not directly, but through your brain. Most of the signals from the outside world go to your brain through your balance system. If the balance system is damaged - our brain gets distorted information from the outside world, and your brain is IN TROUBLE. It starts to work FUNNY, sending wrong signals to any part of your body. It scares you, and this anxiety aggravates these wrong signals even further…. Chad - I found out, that when you try to explain your problem to others makes you feel much better and to cope easier. I really like Paul’s test for determining the progress of your brain’s retraining: “several weeks ago if I did my exercise of closing my eyes and standing on one leg I would fall over in 2 seconds, now it has increased to 20 odd seconds so my brain is retraining so it must be getting better.” It is slowly getting better for ALL OF US. PATIENCE, PATIENCE, PATIENCE! Anna |
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WNB - you wrote: "My new theory on the "heavy feet" phenomenon is that your head is overly depending on the nerves in your feet to tell it how to balance (since it can't rely on your inner ear anymo')". Your theory completely coincides with the scientific theory that people with damaged balance, become overly dependent on their other senses: on vision, or on the sense of "touch" in their feet (they call it "proprioception" if I remember the word correctly). Anna |
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Yeah, the other thing that tipped me off to that is how much dizzier I feel if I sit somewhere with my feet off the ground (hence my brain is forced to rely on my inner ear again.) I also think a lot of the anxiety and headaches I get late at night are the product of my brain and all it's neurochemicals being taxed more heavily then normal during the day. |
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Just a question that I was wondering about.....I have been on this board and the dizzy board. alot of people are on xanax or ativan which seems to help with the dizziness......does anyone know why this is the case???? Just curious :) Laurie |
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WNB - yep as anna says - its a scientific theory and is why people with this become visually dependent also and experience visual dizziness as they rely more on their vision due to a dodgy inner ear. Mary - no salt/sugar does not affect me. Menieres is v v definitive with full blown attacks, hearing loss and tinnitus. U get these or just constant dizziness? KATE - keep smiling - email anytime. xxx |
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Meniere's sounds like it is complicated to diagnose (like all other inner ear problems) b/c everything is symptom-based. I have read that not all people with MD have hearing loss, especially in the early stages. Also, sometimes those with it are mistakenly diagnosed with labs the first time it comes up. I do have the tinnitus in a lot of different forms -- I don't necessarily have full-blown attacks -- it depends how these are defined -- from what I have read not everyone gets the drop attacks-- the symptoms can be less severe (thank god for anyone who has it). Anyway, I hope to hell that I don't have it but am beginning to wonder due to my complete sensitivity to salt/sugar/wine/caffeine, the tinnitius, how my symptoms seem to get so much better only to return with a vengeance (a few times after eating way too much sodium -- Chinese dinner, etc.). I have to do some more reading and see another doctor. The theory about feet makes so much sense -- I feel much dizzier with my feet off the ground and it explains the strange feelings I get in my feet sometimes. Paul -- you described it perfectly -- how you feel scared to death to be by yourself in case a new symptom comes up -- exactly my situation. I can now handle my husband being at his office (unless I am feeling really bad) BUT when he has to go out of town I am constantly praying that nothing strange happens to my body. Hang in there everyone. Mary |
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well its 8 oclock on friday night and im going to bed 10 weeks later and i cant do shit lightheaded and just weak...would be out at a bar having fun...girlfriend is goign out all my friends but i cant cause tommorrow i wont be able to get out of bed.....it sucks........... |
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Hellooooo......anyone see my posts :) |
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Laurie -- Sorry that I can't help you with your Q -- I don't know anything about anti-depressants. Maybe you should post it on the dizzy lounge. Hang tough, Chad -- I bet that you will have a rebound soon -- just sleep whenever you need to. I couldn't believe how tired I was when I first came down with this -- it is b/c your brain and body are working so hard to keep you upright. It is totally normal to feel exhausted. What explains the "floor at an angle" problem? This was a new one that happened to me about a month ago -- I woke up and the floor looked like it was at an angle like in one of those rooms at a fair. When I walked, I felt like I was walking uphill. Anyone experience this??? Tonight, I walked out on our front stoop (which is at a severe angle which I had forgotten) and it almost sent me into a dive/spin -- I've been off the rest of the night. Help! Hang on everyone! Mary |
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Hi everyone :) I'm having a slightly better day today - yeah!! I was actually able to load the dishwasher without getting the spins, so I'd call that an improvement :) funny how we took things like that for granted before we had labs... Laurie - regarding your question about antidepressants, I couldn't say for sure since I've never tried xanax or ativan, but I've heard that an antidepressant called "Amitriptelene" (not sure of spelling) has helped some with dizziness. I believe it's useful for many disorders, not just depression, but I don't know why. My neurologist told me that an overdose of Zoloft could cause high heart rates due to too much seretonin, so maybe taking an antidepressant when you don't really need it for depression would boost your seretonin level similar to being in overdose. If your heartrate is higher, maybe that brings more blood to your brain and helps with the dizzies? Just a guess - I'll try to remember to ask the neurologist next time I see him. Hope this helps! Hang in there :) Jody |
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Another few thoughts - Mary - you mentioned needing a good doc to explain your symptoms. Have you been to a neurologist yet? I happened to find a good one, and he was able to explain a lot to me, which definately helped. If you haven't found a good doc yet, keep looking! I've definately learned not to tolerate a doctor who doesn't seem to be helping much. This labs stuff is just too much to take in stride, so having a doc who is attentive and helpful is a necessity! I used to tolerate a mediocre doc who didn't think it was necessary to explore every illness in depth, since I'm not big on taking meds anyway, but with labs it seems that it's important to delve into the depths and learn as much as possible, if only to preserve our sanity :) I find the more I learn about it, the more patient I can be with it, and the less worried and stressed-out I get when I have a bad day. Hang in there, get a good doc, and remember we're here for you :) WNB: I agree with Anna and Em about the "heavy feet" feeling being a result of our sense of touch being used so much more. It fits with what my neurologist said about pressing my hands and legs into a chair when I get dizzy. He said it would help your brain learn to compensate by using your other senses more than before to determine balance. Mary: I've never personally experienced the "floor at an angle" sensation, other than when I walk and feel like I'm on a boat. But just visually, I haven't noticed that. I wouldn't worry though, since it seems consistent with the dizzies and spins and all. Maybe it's just a milder version of the spins? Laurie: I hope you're over your cold now. It sure does seem to make the labs worse when I get a bug. I suppose that's to be expected since our bodies are already very busy dealing with the labs, anything extra, like a cold, a hangover, etc. would just make it that much worse. I'd try a decongestant while you're down with the cold, since that can sometimes help with labs symptoms too. Hope you're back to feeling better soon! Mary: You mentioned loosing so much weight with the diuretic. I'd be a little concerned about this since you're alreay thin. Especially if you don't think the diuretic is helping much with the labs symptoms. Check with your doc, but I'd think maybe the diuretic isn't doing you any favors. I'd say "chin up" everyone, but that might make you dizzy *g* - so just keep your chin level but your spirits up. Just remember, some people pay a lot of money at bars and carnivals for these symptoms, and we get them for free! Jody |
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Jody, I just had to write and say.... I LOVE YOU ATTITUDE!!!!!! :) Laurie |
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Jody -- Glad you are having a better day -- thanks for the feedback. I went to a neurologist a couple months after this all started -- since he thought that it was all a peripheral nervous system problem (inner ear) vs. central nervous system -- he turned it back to the inner ear specialist. You are so right about getting a doctor that isn't in a rush and doesn't blow you off -- I've wasted too much time with my current doctor. Mary |
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Hi Guys, Just got back from the doctors........she seems to think that the dizziness, puffy eyes and plugged ears are due to my sinuses at this point. She thinks the labs is pretty much gone! She looked in my ears, said no fuild ( have a head cold) then she looked up my nose with that little light thing and said....NOW HERES THE PROBLEM!!!! she said that my sinus is swollen and packed. She gave me a script for Zyrtec. What do you guys think, could sinus problems cause morning dizziness??? Laurie |
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Laurie - dont know HOW she can say labs is gone as it is symptoms based...she simply cant say that! Sinus probs WILL cause labs to flare up. Mary - there is a test for menieres - but cant remember it. It is actually said to be the easiest of the inner ear disorders to diagnose. A good doctor will know the difference between it and labs etc. Labs is nothing like menieres, the only thing that is simialr is the first attack. Doctors who diagnose labs patients with menieres know nothing! The sugar/salt thing I wouldnt worry about - everyone is different and any inner ear prob could be affected by these factors. Jody - Ami (the drug you mention) is used to treat MAV - migraine associated dizziness - which can manifest itself v similarly to labs. Thats why Ami is seen as a good drug for dizziness but to be honest it is not helpful for inner ear stuff like labs - just MAV. xx |
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Hi all, Em - I know exactly what you are saying!!! I think my doctor was saying that because I seem to be doing soooo well, and the fact that my dizziness seems to come in spells. also I think because of the puffiness under my eyes, which goes down as the day goes on and I'm up and moving around. I really don't know why she is saying that...your guess is as good as mine :) Laurie |
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Ah ok, got you. Well yes - you are def improving. Dizziness in spells is a sure sign! Dont be alarmed if the sinus prob stirs things up a bit - it will all be temporary. xx |
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question the last few days ive been getting shakes like tremors in my body..like if i lay on my left side or right side at night i can feel my tremors...is it me or does anyone else have this feeling....i think it may be fatigue but who knows help me out please i was doing well???????????????????????? |
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Chad -- I think that I have had something similar. It feels like the inside of your body is twitching -- it happens in my legs sometimes, and sometimes when I am just waking up it feels like it is happening in my neck/head. Completely bizarre feeling and sometimes I wonder if I am dreaming about it and then wake up or if it really happens. I can't really see the twitching but feel it. On the dizzy lounge website, tremors is listed as a complaint among inner ear sufferers like us. Thank god b/c it is goddamn unnerving!!!!!!!! Mary |
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thanks mary....my anxiety has hit a all time max...but i keep telling myself ive had this before years ago and the spacey feeling in my head no other disease really can make u feel that way and i have had a ct scan so i know nothing is wrong up in my head.its just this damn labs plays with my head and ive also had 3 doctors tell me i have labs but i still think crazy sometime... |
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Hi everyone.... What a horrible morning for me!!! I couldn't sleep all night because I was up coughing from this darn head cold, fell asleep around 4:00 and then woke back up at 8:00 to get the kids off to school.....I felt soooooooo off balance and anxious, NOT dizzy, but boy I didn't like the feeling I was having!!!! Why is this happening??? Is this head cold going to bring me back down with the labs.....I just want to cry!!!!!! I took a xanax which seems to be helping at this point, but I'm soooooo afraid all the coughing is going to bother my ears and make things worse. I can't take much for a cold because I also have a thyroid problem so I have to cough it out :( Laurie |
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anyone else have tremors...ive had them for like 4 days now horribly when i lay down.....when i drinka glass of wine they calm down though so im thinking its nerves...but these tremors are so bad i can sleep i just shake in my legs arms chest stomach etc.... |
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Hi Chad, Yes I have those also... I believe its the anxiety due to the labs. It is the worst feeling. you feel like your going to shake right out of your skin. I actually had it this morning when waking up, but went and took a Xanax and within 15 minutes it gone and I'm ready for my day. It is just unbelievible the anxiety this labs creates. I think the anxiety is one of the last things to leave with this crazy virus with work. Laurie |
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Hi all :) Hope everyone is doing better today! I had a good day on Saturday, then yesterday and today are not so good, but I hear it's supposed to rain here tomorrow, so maybe that's why... Chad: sorry to hear about your tremors/shakes. That must be really unnerving! Even though the wine helps, I'd try to avoid any alcohol for a while at least, since that can make the labs symptoms worse. Have you considered asking your doc for an anti-anxiety medication? It might be worth a try! Laurie: I feel for you with that sinus thing! How frustrating to be getting a bit better with the labs and now to take a step backwards! I suspect you'll feel a lot better once the sinus troubles are over. Your puffy eyes and dark circles are sure signs of sinus trouble - my daughter gets them whenever her sinuses are infected. It always goes away though, when the sinuses are better. Em: Thanks for the info on Ami*-whatever. I wondered about it, but hadn't thought to ask the doc yet. I go tomorrow for the ENG and a "Brainstem Auditory Evoked Potential" test. Hopefully those will either rule out something or find something helpful. I'm not looking forward to the testing, but it will be good to get it over with. The worst of it is, I'm not supposed to take any meds for 2 days prior to the testing - not even vitamins! I had been taking lots of vitamin C and others, just as an imune booster, but I guess a couple of days without won't kill me :) Wish me luck! Hope everyone is doing well today :) Jody |
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another thought - Laurie: You mentioned that you have thyroid troubles too. My neurologist is having me tested for that too since he said thyroid troubles can make labs symptoms worse or can even cause similar symptoms. Have you asked the doc that prescribed your thyroid meds if you might need to adjust the dosage? Maybe that's why your dizziness hasn't gone away as quickly as you'd like? Just a thought... Also, my neurologist said thyroid troubles can effect your heart rate, which also contributes to the labs symptoms (dizziness, hot flashes, etc.) Of course, so can the anxiety that often accompanies labs... It's all so inter-related, it's hard to know what's causing what! On the subject of anziety, something I've found helps me is to focus on my breathing (to keep from hyperventillating) and try some relaxation exercises. If I'm not too dizzy, I close my eyes and imagine I'm lying on a warm beach, listening to the waves. I even have a CD of wave sounds, which can be particularly helpful when I need to relax and sleep. There are lots of relaxation techniques, but one of the ones I like best is tensing and relaxing various muscles starting at the top of my body and working my way down. This really helps me relax my neck, shoulders, and even my jaw, where I tend to carry a lot of tension without realizing it. Hope this helps! Jody |
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Rich -- Thanks for continuing the site for now -- I would have been a complete mess mentally without it. We all know that you did not intend for it to be a weblog -- thanks for making the effort to keep it going for now. I do think that it is a good idea to set up a separate site -- I don't have the skills to do that but maybe someone else does.
Nikki -- I have many of the same sypmtoms as you described as you began to recover from labs -- watching things that move (tv, cars, people, etc) makes all of my symptoms worse. I also figured out that anything that requires a lot of moving up and down or turning around a lot also is a problem -- such as cooking for a long period of time (the big meals that I tried to cook during the holidays really screwed me up) or cleaning. Bright lights, the sun, etc. are a problem, too, -- sunglasses help a lot. Earplugs have helped me considerably -- noises are a major problem (even minor noise).
Kate -- I can completely relate to your situation with your son -- I have two young girls and feel so pathetic as it has been so difficult to take them out -- even picking them up at school has been a problem with the hall noise, bright lights, etc. They also have to help me on walks and in the store -- I feel like their elderly grandma. I think that having young kids when you have a long-term problem like labs makes you feel even more vulnerable!
Overall I am feeling better over the last two weeks. I went and saw my internist last week to have her review all of the tests that were done in Sept./Oct. to make sure that nothing was missed. She was very sympathetic and thought that everything very serious had been ruled out. My MRI in Sept. showed sinisitus and fluid in my right ear (funny how my ENT never told me that my MRI showed fluid in my right ear!). She prescribed an antibiotic for the sinisitus as she thought that it might be prolonging my recovery from labs. She also gave me a steriod nose spray. We'll see if any of it helps.
I also wanted to mention something to all the women out there (sorry guys!) -- my symptoms become much more severe when I have my period (a few days before and during). I mentioned this to my internist and she thought it was due to the increased fluid retention that happens when you get your period. Anyway, if this happens to any of you -- you are not going crazy -- there is a logical explanation for it. I also know that Emma mentioned this problem on her website.
Sorry to go on for so long -- hang in there everyone! Mary