Comments continue...
1. Comment by skye on March 11, 2008 10:14 PM permalink
Hi all- Sandie, yes! I have been sitting in a movie theater, feeling like I'm going to fall right out of my chair and roll down the steps. Not fun. I always choose to sit on the aisle seat, just in case I need to leave. However, I haven't yet had to leave a movie. I try to just ignore the feeling until it passes. I try to not get too scared, and not let it take over. It's definitely hard at times, though.
Anna-I've been hearing great things about the Dr. you mentioned. Thanks for the recommendation. He is on the top of my list to visit. The other place I'm considering is the House Institute in LA. I do have a friend in Chicago I can stay with to visit Dr. Hain though. Apparently he is a leader in the dizziness world, and is also very kind and takes a lot of time with his patients. What a difference that would be to experience!
Anyway, thanks to everyone for your help and suggestions. I have to fly to Austin Texas tomorrow for work, and am getting a bit nervous. Hopefully the flight won't cause me too many problems.
Best, Skye
2. Comment by Anna on March 16, 2008 4:46 AM permalink
Skye - I did not look on the site to wish you a good flight on business. Hope everything went well. Keep us informed about your visit to Dr. Hain in Chicago.
Rich Backer - THANKS again for this new page (ninths!)You have become a good friend of mine through these years - invisible, but very important supporter and helper in my struggle.I have been here from page 1.
Sandie - do YOU live under high voltage electrical line? If I understood correctly: you know at least two people who have dizziness living directly under such a line. I just remembered one documentary from yearlier years, where they showed several neighborours who had brain tumors and they lived right near pylons of such lines.
I am feeling much stronger, taking better care of my body and mind. I am eating healthy food and I walk, walk, walk and walk. I feel HAPPY with my life no matter how dizzy, shaky, fatigued, or scared I am. Now I know, that I am brave and that I can face hardships.
You ALL have helped me enormousely.
I wish you all a good weekend.
Anna
3. Comment by Maria on March 16, 2008 10:10 PM permalink
Hi all: I have been down with this virus for almost 5 months. The ups and downs are are driving me nuts.I feel like my head weighs 500 lbs and I'm always tired. Also I have the fullness in the ear that seems to be typical. I'm at the end of my tether and don't know what to do. Had a great week last week, then bang it came back. Will I ever feel normal again? Maria
4. Comment by Maria on March 17, 2008 2:19 PM permalink
Hi again, This site has been a godsend. Thank you so much Rich for all your trouble. I visit your site every day. I totally identify with those of you who feel like your head is going to burst. It happens especially when I have something else in addition to VL. like a cold. Do some of you find that even getting a cold seems to knock you out and set you back? Also I have days when I feel 95% okay, and the next day I'm back to square one. Does anyone know what causes that? I don't really feel it at all on the good days, so it is hard to see this as an illness. But on the bad days, I just want to crawl into bed. I'm seeing a chiropractor/naturopath who has really helped me, but I'm still not out of the woods.Here are some suggestions which I'm happy to pass on. Ginko is good, and peppermint tea can help with the nausea. Try and avoid oranges as they can irritate the membranes. Apply heat to the back of your neck often(heating pads), because the neck is stiff due to trying to keep the head balanced. If nothing else, it is relaxing. Also sweet potatoes are preferable to white, and steamed vegetables preferable to raw vegetables, especially in the winter. Lots of water, and if can't drink 8 glasses, try cranberry juice mixed with water. The cold weather definately affects this, and I can almost garantee a relapse if the temperature drops suddenly. I live in Canada, and we have had a horrendous winter, with a huge amount of snow and very cold temperatures. I tried being positive, but it's starting to wear thin. I find depression and anxiety, and insomnia go hand in hand with this monster. I have not been to a restaurant in 6 months (afraid I will fall off my chair, and how can you leave in the middle of a meal? I drive locally, and walk to the shops. I can now walk my dog for about 15-20 minutes a day. In the beginning, I could only get as far as the end of the driveway. So while I'm getting better slowly, I find the relapses hard to take. Although I wouldn't wish this on my worst enemy, I feel a lot less alone in dealing with this, thanks to this site. I am on Serc, but don't find it very helpful. My chiropractor at least listens, my doctor shrugged it off and told me not to worry so much. Thank you all for sharing your experiences, and Rich thank you again. Maria
5. Comment by sandie on March 25, 2008 2:42 PM permalink
Hi Anna
Yes I have lived under pylons, not directly under but close, for 20+ years and I know three people personally suffering the same as me who have lived under these pylons.
Of course, everything is covered up by the government or whoever about these things but I know it happens.
Glad to see you are still doing well and long may it continue!
I am due at the ent tonight though I don't really hold out much hope of any miracle cure. I know I am probably doing the best that I can for my condition - plenty of good food, plenty of walking and keeping active and trying to get on with my life.
Maria, you are so right, the relapses are so hard to take, just when you think you are getting over it, it all starts again! Keep fighting!
Sandie
6. Comment by Skye on March 26, 2008 7:55 PM permalink
Hi All, Sandie, just wanted to check in and see how your ENT appt went last night. Hopefully better than they usually go with doctors. I had to go back for more balance testing yesterday, mainly to check for Meniere's. The woman performing the tests said that she didn't see anything that concerned her, but we'll see how my ENT interprets the results when he gets them. Those tests are NO fun.
Maria, I too find that Naturopaths and Chiros are much more willing to listen than ENT's. Glad you have found someone who is kind and understanding.
I had 5 days last week without an ounce of feeling off balance! Quite astounding for me! Today the feeling is back just a bit, but I think it's b/c I had a small amount of caffeine this morning. Caffeine seems to be my enemy.
I'm currently still taking Ginkgo, a mineral supplement, a strong anti-oxidant, and grapeseed extract. I read somewhere that grapeseed extract is really helpful in extracting fluid/pressure from your ear. Not sure if this is accurate, but when I was feeling off balance last week, I increased my grapeseed extract dosage, and the off balance feeling got so much better! Maybe a coincidence, but I'm going to keep taking it and hope that it continues to work. And hopefully it will also work for others.
My current ENT is debating between Meneire's and MAV for me. If those balance tests come out clear, he wants to start treating me with migraine preventative meds. He said that constant off balance feelings relate more closely to MAV than Meniere's. Who knows for sure. I still feel like it was Labs.
Oh, the journey is long, but we will all reach the end!!
-Skye
7. Comment by Anna on March 27, 2008 5:09 AM permalink
Hi, everybody
Everybody - I want to make more clear Skye's remark that he is taking GrapeFRUIT Seed extract (not grapeseed extract). It is really a good thing to take in on a regular basis. I also have heard many positive reviews from other people. Waht I do - I eat whole grapefuits WITH seeds. They taste somewhat funny - but I know they are good for my health. One more good stuff for balance: GINGER ROOT. It is well known, that Chinese sailors always chew whole ginger roots to prevent sea sickness, and it works wonders: they are never seasick even during very stormy days. I convinced my mother who cooks in my household to add some grated ginger root into some dishes. Again it taste different, but we are getting used to it's spicy, new and fresh taste.
Sandie - I am going to make more research about this thing: living under or close to source of electromagnetic waves, that are causing your (and other's!) ongoing problem. To tell you the truth -it makes me awfully angry. It is your personal great courage to live with THIS, but why should you suffer?!!!
Maria - do not lose hope. Look: you can go shopping by yourself - big achievement.
Personally: I am doing better. I am volunteering at my old job. Feeling stronger and have much more self-esteem,than three months ago, when I just started to go to work. I can sit for two-three hours at lab meetings and discuss current and new scientific and applied projects. I make notes of everything, that is going on in the lab in my logbook. I look down, trying to concentrate and to prevent my eyes from jerking. I am very tired, headachy, but, guys, I am HAPPY, that I am coming back to life after more, than four years of slipping into abyss.
Do not give up. Write a post if you need to vent -it helps.
Oh, I am tired of this laptop...
Anna (veteran of dizziness, imbalance and headaches)
8. Comment by Anna on March 27, 2008 5:30 AM permalink
Sandie - more for your information.
http://news.scotsman.com/cancerresearch/Did-living-by-this-pylon.3280218.jp
It looks like there is very little research have been done in the area of effects of electromagnetic radiation on people's health. Next to nothing is known as trustworthy facts. No government, or organization, or special fund is going to support such research in the nearest future, alas...
Anna
9. Comment by Rhonda on March 27, 2008 5:13 PM permalink
Hello Skye and everyone, Skye you sound like one tough cookie. I am impressed with your definanition of severe verse moderate. I just wanted to mention to keep in mind that Migranes may be a symptom and not a cause I found that it fortuntantly was in my case. I also discovered dairy does not work well in my system and since I have stopped eating ice cream and cheese. I have felt much better. I think I discovered where the "Pressure feeling " at least in my case is coming from. After a visit to the chiropractor, he verified that my 2nd vertabrae was out of place. After he adjusted that. I could feel the neck muscle (I am sure anna or meagan would know the name) move as it did the "Pressure feeling dissipated immediatly. Even though it was minor in movement it felt a lot worse that it actually was I am sure. I am still going to the chiropractor for "minor adjustments" and occasionally to my Acupuntionerist about every 3 months now. My migraines are almost completely gone. Also getting off of Birth control was another health altering event. I also still take the Vitamin B 6 with Niacin. I can also feel a huge improvement just by eating high doses of vegtables. In fact I am starting to even grave them in the afternoon. (UG) Anna I hope you continue to do well Hope this helps, and Everyone stays well Thanks Rhonda
10. Comment by Maria on March 27, 2008 6:57 PM permalink
Hi all: I really appreciate all your comments on this site. We're all in this together. Anna,I admire your persistence. It seems to be really paying off. You must feel good about being semi-normal again. Keep it up. Sadie, what is MAV? I have never heard of it before. I have heard of Meniures. Skye, you are keeping very positive. Congratulations. I find with this, you have to be grateful for every good day. Last week I went to Wal-Mart for the first time in 5 months. Felt a bit funny, but not too bad. I couldn't have done that 3 months ago, or even a month ago. Any of you on Serc? do you find it helpful? I find it marginal. But I don't want to stop for fear that I'll go back to square one.
I have had a week without a setback, Yeah! The longest period yet. I don't think it's over, this thing won't give up without a fight. Take care everybody, remember, one day at a time. Maria
11. Comment by sandie on March 27, 2008 7:31 PM permalink
Hi,
Think one of my posts has gone missing here. I went to the ENT on Tuesday and they offered me an MRI which I refused as I just could not bear to be in that tube. Anyway I am going to have a CAT scan instead.
I was a little shocked that I was being offered a scan at this late stage so consequently forgot to ask all the questions I had in my mind before I went. I could have kicked myself when I came out!!
Anyway, he did say that he didn't think there was anything there and that he wanted to put grommets in my ears and then inject my inner ear with steroids. This also was a bit of a shock and I did not ask him why. Does anyone know anything about this procedure?
Anna, thanks for the info about pylons. I will look at that at a later date. I know why nobody will sponsor it - because there will be so many cases of compensation that will follow! They don't want everyone to start putting in claims.
Maria, serc did nothing for me and a friend I have also has not had any success with it.
Sandie
12. Comment by amanda on March 29, 2008 1:52 AM permalink
Hello there, I just wanted to post because I have really appreciated reading the many posts on this site. I have had labyrinthitis for three months now. I got it after the holidays when a virus from the stomach flu settled in my inner ear.
After many many blood tests and every other possible check the doctors could think of, I was referred to an otolaryngologist (an ear/brain specialist). He put me on a mild diuretic which has a helped me tremendously. The diuretic adjusts the liquid levels in the inner ears and helps to relieve the pressure in the ears that contributes to lab. It made me feel a little worse for a few days as my ears were being adjusted and now I'm feeling much much better - dizzy and lightheaded spells are gone almost completely.
I just wanted to share this for those who might be looking for some new treatment ideas. I don't feel back to my normal self yet but am back doing pretty much all my normal things despite that - and before was pretty much homebound due to this.
Good luck to you all.
13. Comment by robert on March 30, 2008 2:07 PM permalink
Hi all, Im new to this site just reading it today.ive read many posts and found my symptoms i have are common!last year in july i had a real bad ear infection 4 courses of antibiotics,then dr said my earbrum seemed burst....since then i been suffering dizzy spells but not dizzy to which i find hard to explain..i saw an ENT he said nothing i had no xrays done just a ct scan..but this now has lead me to anxiety and also depression,my ear feels full,my throat hurt and also had my tonsils removed in 2005..and i still cant swollow!..my balance is really all screws up..but the feeling is mostly derealization..panic attacks headaches neckaches etc...i have alot of the sympotoms most people have written..ive seen a shrink he diagonsed me as a hypocondriac...but mostly the feeling i have is not feeling the world or my bosy or movements as real ...can anyone help me or give me some advice please thanks. rob
14. Comment by DM on March 31, 2008 10:21 PM permalink
Hi Just wondering if anyone has had ear tubes placed? If so, did you find it helped with the ear fullness and ringing? Thanks
15. Comment by Maria on April 1, 2008 6:55 PM permalink
HI all: That is great news Amanda, that your VL has almost gone away completely. I was told that the Serc which I have been taking for over 3 months was supposed to level the fluid in the ears too. I didn't have much success with it, although I am feeling much better. Have been symptom-free for almost 2 weeks. My problem also started with a stomach virus, but that part cleared up in about a month. The ear problem has remained for another 4 months and counting. At least there is light at the end of the tunnel I was pretty well homebound too but now I am living a semi-normal life again. Anybody try Zinc, I find it helps a bit too, at least with the energy levels. Take care everybody Maria
16. Comment by Curt on April 2, 2008 11:46 PM permalink
I just found this site while looking for answers for my wife. About a year ago she got up early in the morning to go to the bathroom. She says she "passed out". She came to and called to me and I had to help her up and to the bed. I took her to the emergency room and she stayed in the hospital for several days. Since this time, she has had miagraine headaches and periodic dizzy spells. She also seems to have periods of slight memory loss. She is 50 years old. She has had multiple MRIs, brain scans, xrays, sonagrams and every other test you can concieve of. They found nothing. I am suspecting either benign positional vertigo or Labyrinthitis. She has seen several doctors and two neurologists. She has been unable to work since that time. In bed, she can roll over on her left side and immediately feels like she is falling through the bed. This effect lasts for just a minute after she rolls back over. Initially, her miagraines just involved the "Aura", but now they are becoming more painful. When she has the headaches, she can't even spell simple words or think of common things.
What does this sound like to you guys? I am in the Dallas Texas area. Does anyone know of a reliable person to see about this? I am afraid the doctors we have seen are clueless.
Curt
17. Comment by kimm on April 8, 2008 1:27 PM permalink
Curt-
I can't recommend any doctors in TX, but here's a link with a lot of good information. Whatever your wife's diagnosis is, it sounds like migraines may be a part of it.
http://www.mvertigo.org/
18. Comment by Anna on April 9, 2008 2:53 PM permalink
Hi, everybody
Lately, I have been very busy trying to get back to my old job in a scientific lab. that's what I love to do for the rest of my life. I will die but I MUST be back! I have been volunteering there from January 22 this year, so it has been two and a half months. I am on permanent disability with "daily dizziness and daily headaches" since June 2004.
I have been reading each of your posts, folks. Sorry if I could not answer all of them or give your some response. But I am here, always with you. You give me so much INSPIRATION with your everyday struggle and your everyday achievements.
Maria - Serc did nothing to me - no good, no bad. But I heard, that some people benefited from it taking it for a year or two. If you are certainly allergic to something - Serc might help. DM - ear tubes were supposed to help American children with ear infections back 10-20 years ago, but later wide epidemiological studies showed, that EAR TUBES were NOT helpful. They brought more harm, than benefit. I have read a good report on that a couple of years ago. Rhonda – your chiropractor were of great help for you. Probably, you had something in your neck, that somehow obstructed normal blood (thus oxygen!) supply to your inner ear tissues. These tissues suffered with mild oxygen deprivation and here we are: your were dizzy. Blood cannot flow to our heads other way, than through our necks. If muscles in your neck are pressed for some reason by vertebrae – some blood vessels could also by partially obstructed. But it’s only my speculations, maybe the explanation of Rhonda’s problem is different.
Sandie – how is it going with corticosteroid delivery procedure to your inner ears. I have read, that this treatment is available here and there. To my opinion – it should not hurt you, and who knows, it might help. Corticosteroids are very powerful being delivered directly in contact with effected tissues. With that procedure, that your ENT doctor prescribed – the drug should be periodically (or constantly?) delivered through tiny tubes inserted in your ear drums right to oval and round windows on the outside of the inner ear. Am I right, Sandie?
Somebody asked what MAV is. Migraine Associated Vertigo – it is known very little about the cause (or causes).
I wish you all a GOOD day, no matter to what degree of the illness each of us is affected. Let’s hope for even better days.
Anna (veteran of dizziness, headaches)
19. Comment by skye on April 9, 2008 7:30 PM permalink
Hi all- Rhonda, I always love when your posts pop up!
My balance tests all came back negative for Meniere's, so my ENT thinks that it is MAV-Migraine Associated Vertigo. I'm not sure if this is a result of an initial viral labs infection, or if it was MAV all along, but the diagnosis does seem to fit with my current symptoms. (Dizziness, off balance, visual disturbances like blurred vision or seeing wavy lines when looking at a light or white background, and mild tinnitus)
The trouble is, I haven't found a neurologist in Utah who knows about or understand MAV. Therefore, I'm going to take a trip in June to see Dr. Timothy Hain in Chicago. He treats MAV daily, and is very knowledgeable on vestibular problems. Curt, if you are looking for an excellent doctor, and can travel, I'd recommend Dr. Hain in Chicago. Check out his website. http://www.dizziness-and-balance.com/contact.htm Some of your wifes' symptoms sound very much life MAV.
Man, it's been quite the journey these past 8 months. I'm still searching for an answer, but refuse to give up. I hope that everyone on here stays positive, tries to fill their life with healthy things, and keeps moving forward toward an answer.
Take care all. Hope you all feel well today!
Skye
20. Comment by Maria on April 14, 2008 6:37 PM permalink
Hi all: Your comments are all an inspiration. Rob, I really understand what you are going through. You are not a hypochondriac. You have a medical condition called VL, and your balance is all shot. I read somewhere that the anxiety is part of the condition not the result of it.It's awful that you are not getting good help. Have you tried a naturopath? My doctor simply disregarded the whole thing, but my chiporator helped a lot. It's worth finding someone who will listen, and who doesn't think you are inventing the whole thing. I'm still having some dizziness, but feel much better. Now my 27 year-old son has come down with it, although his doesn't seem as severe. Talk about rotten luck. He was one the ones who thought I was exaggerating. All the good stuff we pass down to our children! Skye, I was glad to hear your Menieures test came back negative. Is there medication for migraines that you can take? You have done great staying positive for such a long time. Good luck everybody, spring is here! Maria
21. Comment by BeatleMark on April 14, 2008 7:34 PM permalink
Hi all. Just a quick note to tell you that I am still feeling much, much better. I was hit with a very bad case over 3 years ago. Recovery is very, very slow so keep the faith. I am about 95% some days (even 100% some days). Then maybe down to around 75% here and there but so much better overall. Most of the anxiety has gone away as well as most of the ear issues and dizziness. Guess what? I actually went on a Carousel yesterday with my 2 year old daughter! A carousel of all things - my wife couldn't believe it. I just wanted to share that with those who are still in the throes of this illness. Recovery is gradual, very, very gradual but you will get there. Keep the faith and courage.
22. Comment by sandie on April 15, 2008 1:49 PM permalink
Hi everyone,
Hope you are all doing ok. I have just had a really bad head cold, with joint pains, lack of energy and conjunctivitis in both eyes resulting in a week off work. But, guess what, no dizzies as yet just the usual milder stuff. Thank god, I was so worried that this would cause another relapse as it so often can!
Anna - you are right about the procedure for injecting steroids into the ears, but I have decided against this treatment. I have been posting on the inner ear disorder message board and one guy on there has had this done and he is no better for it. He got relief for a couple of months at a time and then would have worse dizziness than before and have to have more injections. He doesn't bother with it now.I pretty much live a normal life now, with just mild dizziness and feeling off balance now and again, so I do not think this necessitates maybe making myself worse.
I have also decided against the CAT scan, as these too are high risk. It is thought that 1 in 2,000 people will get cancer as a result of having a CAT scan and I don't want to be that person. While I do worry deep down that there is something in my head that shouldn't be there causing all these symptoms I also believe that I have had them so long (3 years), that there really can't be anything seriously wrong. I hope I am right.
Take care
Sandie x
23. Comment by Skye on April 17, 2008 8:03 PM permalink
Hey all- Hope everyone here is feeling well today.
I have been feeling better as of late, until this morning. I woke up with my ear full of pressure again. I haven't had this symptom since last August, when this all started. I was just wondering if anyone here has had reoccurring bouts of ear pressure. Is it normal to come and go? Anyone else experience this?
Thanks for any replies.
Take care all!
Best, Skye
24. Comment by megan on April 21, 2008 4:46 PM permalink
hey all, it's been awhile since i posted. i want to HIGHLY recommend a book called "migraine" by oliver sacks. he is a british neurologist. this book blew me away as i saw many of my symptoms in it. and even if you don't get headaches you can still have migraine disease. migraine has so many symptoms that vary from person to person as well as daily from person to person. i finally figured out that the fullness up under my jaw that i get (and hate) is a carotid migraine. when it spasms the area becomes congested with blood. severe migraines can cause injury which is why i have so much left ear vestibular damage. they can also mimic strokes. i am not saying you all have migraine. i never had a history of it and neither does my family that i am aware. just get the book and read it. it is a little bit of a difficult read but the author is amazing and i wish i could go to him with this. it may ease some of your fears as well. remember migraines don't show up at all on tests. one might be seen by shooting dye up the vessels and observing one in progress but other than that, there is no real test. i also went to a migraine seminar recently. i believe the neurologist read the book too. anyway i figured this out on my own. sometimes i start to get a dizzy, vertiginous feeling which is accompanied by hot flashes, body tingling, and nausea. and immediately following this, here comes that full feeling in my carotid area. yes it fades after a couple days but some fullness remains (very little) due to the fact that i know the migraine has damaged my blood vessel. also all this started with bppv in both ears which was confirmed. there has been some evidence of bppv and migraine association. maybe all this was caused by a bad virus. i don't know. please read the book. also magnesium 200mg is recommended for people with migraine. it does seem to help. anyway sorry to be such a stranger. hope this helps. and forgive me if i've already posted something similar. megan
25. Comment by Kim M on April 22, 2008 3:14 AM permalink
Skye-
You mentioned MAV in previous posts. You may want to pick up the book "Heal your Headache" by David Bucholz. Very imformative,believe it or not, ear pressure can be caused by migraine.
26. Comment by mr. smith on April 23, 2008 3:53 PM permalink
Hi people.
I was diagnosed with labyrinthitis last april. I started feeling a bit dizzy and I was finding it hard to focus on things, so I thought maybe it was my eyes, and the straining was giving me the headaches. After a few days of that I decided I should probably get an eye-test but before I had the chance, things got much worse.
It got to the point where I felt so dizzy that I was throwing up every 20 minutes. I was getting barely any sleep because lying down made it worse so I had to sleep sitting up in an armchair. Eventually I went to hospital because of course my constant vomiting dehydrated and starved me which made things even worse. They put me on a drip and diagnosed me with labyrinthitis. Gave me some anti-vertigo pills, signed me off work and told me I'd have to ride it out.
Since then I have had mild recurrences, but nothing like the first time. I'm in the middle of one right now which is how I came across this place. But what Maria has said has really interested me. My two main recurrences have come immediately after suffering from a cold. I had a cold last week, then just as it was fading I started getting dizzy, and I've been getting bouts of nausea. Luckily I haven't actually vomited yet, so I'm hoping it's going to phase out again soon.
It is a horrible thing. When it lasts for a few weeks, it doesn't stop me living my life but I constantly feel under the weather and not on top of my health which is just depressing.
27. Comment by Anna on April 23, 2008 8:18 PM permalink
Howdy from OK, There are very stormy days in Oklahoma this time of the year. I am NOT dizzy,some imbalance when turning quickly around, or bending down. I am only very-very headachy and sleepy. But nothing even close to the HORROR that I had just two years ago. Lawn mowers and other loud motors still bother me a lot (I hate them absolutely, why people are so much obsessed with their stupid lawns????!!! they'd be rather thinking of each others' HEADS!!!). I am planning to go with my husband to visit our children in Boston area. I have to tolerate air flights and all noises and four take-offs and four landings, all that sickening things for me. As a rewarding gift for my sufferings I will have great fun to kiss and hold our grandson, who is turning ten months soon. He makes me happy! It is so good to BE ABLE to make plans for future !!! I am so sick to be housebound for long-long months, even years....
Beatle Mark - Carousel (Mary-go-round)- it is unbeleivable that you can think of doing this! I could not do that even being a child. My mom remembers, that once she put me on carousel, and I got from it falling and shaking, green pale. I do not remember that, but I still always have this sence of stomach coming up to my throat if I only look at those rotating funny things.
Everybody - keep going, we shall overcome.
Anna - (I am on the fifth's year of my fourth major bout of DIZZINESS/VERTIGO etc.)
28. Comment by Maria on April 24, 2008 2:15 PM permalink
Hi everybody, Hope you are all feeling better now that spring is here. Weather seems to help. Skye: when I have setbacks, I get exactly what you mentioned. The ear is full of pressure. I usually wake up with it and it stays all day. My doctor said it has to do with fluid levels in the ears. It only happens in one ear. Do you have a cold? I think that is what causes it. Do you find it makes you dizzy? I have an ENT appointment in two weeks after waiting 6 months. i will try and get more answers. Shrugs from my doctor aren't enough. It is sure hard to get rid of this thing. Regards, Maria
29. Comment by on April 24, 2008 8:20 PM permalink
Hi eveyone, I had posted a few weeks back. I'm doing better but have really started to feel terrible again. I am going to see a biovalent specialist on Monday. She said that she has had some success with cases like mine, so I have my fingers crossed. I'm wondering if the changes in the weather have aggravated my case. It's certainly been tough to get through. The headaches have been everyday!
Best to you all. I will report back if I have any success with the biovalent specialist. amanda
30. Comment by Maria on April 25, 2008 2:18 PM permalink
Hi all, Hope that you are all having more ups than downs.Anna you are very brave to be doing all that traveling.All those airports! And you are absolutely right about loud noises.Also bright lights I find. Never bothered me before.Does anyone know or has anyone been told VL is somehow connected to allergies. Just wondering.Sometimes I have pain in my nose. It sure is sloooooow. All the best everybody. Maria
31. Comment by skye on April 25, 2008 7:53 PM permalink
Hi all- Hope everyone is feeling well today.
I've been reading Heal Your Headaches, by David Bucholz. It's a fascinating read! If you have a chance, I'd encourage everyone to read it. I too have never had true migraine pain, but I now believe that I've been experiencing silent, vestibular migraines. I feel pressure behind my eyes, sometimes pressure in my ear, I see tiny wavy lines, get tinnitus, and feel off balance. I've made an appt with a neurologist, but it isn't until the end of June. Unfortunately there is no specialist in Utah who really understands MAV-Migraine Associated Vertigo-so I'm hoping to travel out of state soon to see someone who does understand it.
Maria-Yes! I do find that when my ears feel full, I'm usually dealing with some type of sinus pressure or cold. Luckily my last bout of ear pressure subsided within a couple of days and didn't lead to a vertigo attack. It definitely made me feel more off balance than usual though.
All things considered, I'm managing pretty well. I never miss work, and try to stay as active and social as I can. There are times that I don't feel great and have to leave events early, but the fact that I can at least get to them in the first place is positive for me.
Hope everyone out there is staying strong, staying positive, and know that this thing will get better!!
Skye
32. Comment by sandie on April 27, 2008 2:58 PM permalink
Hi Maria
Regarding your question about allergies, I have had VN for three years now and did not have any allergies before, but last year I suffered from hayfever and had a relapse which might have been because of this. I now wake up every morning and my eyes sting and water like mad. I take an anti histamine every morning which helps. Also, since I got VN my asthma has been worse. I don't know if all these things are age related (I'm 47) or as a result of getting VN, as asthma, allergies, ear, nose and throat are all related.
Take care
Sandie
33. Comment by Maria on April 28, 2008 4:02 PM permalink
Hi Sandie, You make a good point about ears,nose,throat all being related.Like you I have never had allergies before,but at 60,anything is possible. My doctor told me I have some inflammation in my nasal passages.A lot of people mentioned migraines on this site,and since they are due to some inflammation,I wonder if that could be part of the problem.I feel a lot better,and I don't really get headaches,but I feel constantly stuffed up,and often my eyes and nose hurt. What type of antihistamine are you using? This VL seems to be on the rise.I hear of more and more people who have it or have had it.Maybe that will make doctors sit up and pay attention. Have you seen an ENT Sandie? Regards, Maria
34. Comment by Jose on April 29, 2008 10:13 PM permalink
How bad is this for people who are already prone to anxiety and depression? I was already a severe sufferer of both, and FINALLY had it under amazing control, then, got Labyrinthitis. My world has crumbled once again, and I don't know what to do. The medication/supplement combination I was on before was so mild, and so effective, but ever since Labs became serious this miracle combination has lost all of its fizz. Should I be worried that my body has become too used to the pills? I absolutely hate increasing my dose (because of side effects), and knowing that I had it so perfect before, disheartens me. I take a very small dose of Lexapro (10 mg), and before all of this started its really all I needed. Basically I just want some input on whether or not I actually NEED more, or it's just the Labyrinthitis doing so much of the anxious/depressive damage.
35. Comment by sandie on April 30, 2008 12:35 PM permalink
Hi Maria
Yeah, it took me 46 years to suffer from allergies and it's a bummer, isn't it. I don't suffer terribly like some people do, more on a milder basis. I take one benadryl antihistamine tablet per day, in the morning, (you can take up to three. This is actrivan and is non drowsy as the first pills I was prescribed had me falling asleep by the afternoon!
Migraines can cause all this dizziness and other problems and is called MAV (migraine associated vertigo). It is worth looking into this as you don't have to have headache pain to be suffering from migraine. Lots of people have had success in getting rid of their symptoms by taking migraine pills. Have a look on the inner ear disorders board - there is loads of information on there. (at the top of this page - right hand side)
You are right in saying that there are more and more people suffering from this illness. I have three friends who suffer from the same thing. Three of us live on the same estate and another is a friend I have known for years and years. I know the ENT in my area has a 24 hour clinic for people suffering symptoms, so that proves that there are lots of people suffering. Actually I forgot - I know someone else who suffers, my friend's husband suffered for years but is much better now.
Yes I have been through the usual ENT procedures and no miracle cure, nothing I couldn't research myself on the internet anyway!
The main thing with this illness is not to be too afraid of it. Do your gaze stability exercises, and VRT and I swear by getting in as much walking as you can. This is so good for you as you are using all your senses and helping your brain to compensate.
Jose, I feel so sorry for you as you already suffer from anxiety and depression and I would say that, yes, the labs definately does lead to anxiety and possibly eventually depression. Please try not to increase your dosage as anxiety with Labs does go away given time. Labs and VN do get better but you have to be patient. Fight it with all your strength, don't give in. I had anxiety for a few months in the earlier days (3 years ago) and it is not nice to suffer, but you can get over this, you have done it before, you can do it again. I might add that I did not take any pills for this anxiety though I was offered them by my GP.
Take care
Sandie
36. Comment by sandie on April 30, 2008 3:30 PM permalink
Hi
Forgot to mention that we purchased the nintendo wii fit yesterday and it uses a balance board to do the exercises on. It has a balance section and actually measures how well you cope. It really is good fun and I think is excellent for people like me who have balance problems.
Sandie
37. Comment by Michael_Jeffrey on May 4, 2008 7:41 AM permalink
Hi there,
Just wondering, do any of you sufferers of labyrinthitis ever get ear aches / pains?
Michael J
38. Comment by Michael_Jeffrey on May 4, 2008 11:30 AM permalink
Hi there again, I have another question.... Has anyone here not done an MRI (or any other brain scan) but still been diagnosed with Labyrinthitis? (in other words, have any of you had a doctor that didn't feel it was necessary to do a scan of your head to rule out say, a tumor or whatever?)
39. Comment by Maria Matheson on May 5, 2008 12:14 AM permalink
Hi everybody: Sandie: thanks for all your helpful comments.The reason I asked about Migraines,is because both my mother and grandmother suffered from them,and I never have.My doctor says that I have some inflammation in the nasal passages,so there could be some allergies that I don't know about.My ENT appointment is next week.We'll see if he can shed some light on the situation.Will keep you posted. My experience so far has been that I get way more help from this site,than I have from my doctor,who seems to think that I am making too much out of this. Jose: depression and anxiety are a part of this. They are not your reaction to it. Also,apparently panic attacks are common.It all has to do with the balance problem. It will get better, it just takes forever.Try and get plenty of rest, you will see that little by little,things will improve. Michael:I definitely get earaches with this.Although they are not severe.They tend to come and go, always in the same ear. Also a feeling of pressure in the ear, and of fluid sloshing around.On good days,I don't get that at all. My doctor didn't feel it was necessary to do an MRI since he thought it was basically a cold.When I asked if it was a brain tumor, he just laughed. I bought a small trampoline to exercise on last week, and believe it or not, jumping around on it isn't making me feel dizzy. Things are looking up. Take care everybody, remember you are not alone.
Maria
40. Comment by Michael J on May 5, 2008 1:11 PM permalink
Thank you so much Maria for answering that. I've had the sloshing (especially if I pick into my ear, like if I was trying to pick out wax [yeah, I know gross - but how else am I going to explain it? - lol])
Tonight I've experienced a very high temperature and slight vertigo has come back, I THOUGHT IT WAS OVER !!! NO !!! It's not damn it !!
Anyway, thanks again.
Michael
41. Comment by sandie on May 5, 2008 7:17 PM permalink
Hi Michael
I have not had any MRI or CT scans and have had this thing going on for 3 years now.
Although there are many symptoms of Labs/VN they do all follow a similar pattern and I think that is why we are not all referred for MRI. Mine was kind of a text book case and they have never thought anything else was wrong with me. I have however been referred for an MRI at my last visit to ENT last month, not because he thought there was anything to look for just for my own peace of mind. I cancelled my appointment however because I am very confident that it is all an ear thing with me!
I have had ear pain over the last three years but only for fleeting seconds at a time. My ears do feel full quite often and I somethimes experience a fluttering feeling, like I had a butterfly in there.
Sandie
42. Comment by Jose on May 6, 2008 4:45 AM permalink
Hi again,
I just wanted some further closure on some things. First of all, I came down with Labyrinthitis on January 26th of this year. I suffered from vertigo (as if my own body was moving), disorientation, feeling like the world was surreal, and depression and anxiety along the way. The vertigo has been completely gone for about 7 weeks. However, I still don't have my normal "directionality", and my vision also just doesn't seem right. I really just don't feel on top of things like I used to. My main concern is the major anxiety and depression that I need to figure out. At about this EXACT time last year, a horrible depression came over me that I could not get rid of until I started taking Lexapro. Now, there's a lot more that triggered it last summer, but here's the problem: I'm on Lexapro right now, and it's stopped working. The other night it was like I couldn't even look my own family in the eye, laugh, or smile. Now, I've seemed to have quite a problem with looking people in the eye ever since all this Labyrinthitis started. Has anybody else had a problem with this? It's like people aren't even real, let alone the world. But back to my main concern.. I've once again been burrowed into a deep, dark depression, this time ON PILLS, and need some true support on how much of this could actually be from the Labyrinthitis. I was on the PERFECT dose before all this started, which was a very minimal amount, and was feeling on top of the world. However, I've been on and off Lexapro for 3 years now, so, I'm truly wondering, could it finally be wearing off at this low dose?? Or is Labyrinthitis really THAT capable of absolutely demolishing my happiness?
43. Comment by Larlie on May 6, 2008 2:46 PM permalink
My daughter has just been diagnosed with Labyrinthitis and I found this site while looking for information. It is very enlightening. I will have her review it because there is a lot of information that may help her cope with this illness. Thanks to all who use it.
44. Comment by Skye on May 9, 2008 8:27 PM permalink
Hi all- Just thought I'd comment on what Maria and Sandie mentioned regarding allergies. I too have an inflamed sinus, on my bad ear side. Pretty interesting. Seems like everything on the left side of my head is inflamed. That's where I feel the most sinus pressure, where I have the vision issues, ear issues, etc. I definitely feel like this is either migraine or allergy related.
Also, I did have an MRI early on. When my off balance feeling didn't go away within a few weeks, my ENT sent me for an MRI, which came back clear.
So far, I'm no longer suffering with bouts of dizziness, but I do still get mild tinnitus, and I have vision issues, which make me feel very off and off balance. I start to get pressure behind my eyes and in my sinuses, and then things start looking funny. My computer screen seems to tilt sideways, things seem to be moving that shouldn't be, etc.
I wake up almost every morning with the left side of my nose feeling clogged. I really feel like either a migraine is inflaming the left side of my head, or an allergy is causing the inflammation.
Still awaiting my neurologist appt in June. Will update everyone on how it goes.
Hope you all are feeling much better! Hang in there!
Skye
45. Comment by Rhonda on May 10, 2008 6:39 PM permalink
Beatle Mark congratulations on the Carousel. I bet you jumped up and down.
Skye Yes I had the same problem. You and I sound like we had very similiar symptoms. Hang in there. The other day I had the pressure thing but finally no vertigo with it. What a relief! Have you tried flaviods and niacin with the B. The niacin really kept the pressure controllable. Hope you feel better. Rember I went from getting it all the time to where I am now. Thanks to the Acupuntcturist and chriopracter that I was able to come across. Out of all of the doctors they were the most knowledgable.