hi i have had labrynthitus for 20 months now and for the past 2 weeks i have felt great just the occasional feeling of lightheadness i have been taking multivitamins everyday and dont know whether this has helped but have been wearing a magnetic health bracelet and touch wood no neck or shoulder pain either the pins and needles have stopped and had actually forgotten what it was like to feel normal again so to you all who have this please try to be strong because we can beat this and this is what i have been telling myself take care all of you and will keep you posted about how i go on xx

Thanks mollysmum for the positive message. It is great to read positive messages on this board. 20 months...hmmmm... that's a long time. What percentage better would you say you are now? 90%, 95%, 99%? After 8 and a half months I range from feeling 65% - 90% depending on the day. I was hoping to reach 100% in the next few months.

hi
i feel 99.5 percent at the moment as like you at about 8 months on i began to feel about 50 -60% better oh to feel 100% normal wouldnt that be great but at this present i will be happy with 99.5% i just hope that this lasts and i dont relapse but as i keep telling myself i will beat this and i am sure the rest of you will to given time xx

Thanks mollysmum
I suppose I need to accept that I'm in for the long haul. My long haul was 1 year and now I reckon I need to extend that!

Hi Molly,

Glad to hear that you are feeling better after 20 months. It gives me hope. It's going to be 20 months for me tomorrow. Where do you get a magnetic bracelet?

Jen:
I was just wondering if you do anything special such as diet to try to make this go away quicker. Like you I have my ups and downs. Two days ago I could say I felt 90% normal. It's almost scary to me when I feel better because if you get a set back the mental part of that is sometimes unbearable. I have now reached month 6 and am praying everyday it goes away before I start my new job in September. You said your symptoms were quite similar to mine. Did they diagnos you with Lab? I was told my Labyrinth was fine. Do you work a full time job? And when you have a set back do you find that something triggers it or it just shows up whenever it pleases. I truly feel like I am on my road to recovery but sometimes it's just hard to keep such a positive attitude. I think that if I were rich and didn't have to work I could deal with this better because I read the symptoms of some of the other people on this board and my heart goes out to them.

best to you
Scant 5 (Kathy)

P.S. Did you ever get tinnitus with this, I have noticed that within the past week it is getting milder. I only have it in my right ear and it seems to be more pronounced in the mornings when I wake up.

Kathy,

I've been having problems with dizzyness and the "out of sorts feeling" for about two and a half years. For about one of those years i've been feeling better and have just had vision fuzziness and slight light headedness. Untill last thursday when I almost went to the hospital. I was driving home from work when I suddenly felt like I was going to pass out. I haven't felt like that ever, since then my symptoms are as bad if not worse than they were when I first got sick. So I hope you stay well but I personally have had setbacks in my struggle to stay well. Hope my news isn't bad to hear. Good luck with your job. I find that if i'm outside doing something that I feel better than being inside and sitting around so if you have a sitting job I suggest walking during your lunch break or something.

Rose,
Thanks for your reply. I am trying to keep a positive outlook on this and just keep telling myself I am going to get better. It seems like we all have different symptoms. I actually feel almost 100% normal when I am sitting, standing or laying down. I force myself to do something everyday because I know that is part of the healing process. When I am overactive is when my symptoms seem to be more pronounced. I am also using alternative therapys to try to make myself feel better.
The mind is a powerful tool and I keep telling myself, you can overcome this. If I am having a bad day, I take a valium because sometimes the anxiety is just to much to bare. My friend was talking to a couple of guys about this illness and one of them remembers a man who got some kind of inner ear thing. He had an incredible sucessful bakery business and was forced to sell it and give up working, two years later he was totally well and has not had a reoccurance. You just never know when this is going to leave you, personally I hope it doesn't take two years.

All the best
scant5 Kathy

hi and thanks for replying to my message good luck to you all regards to tinitus i also get this first thing in the morning and mainly when i first lie down to go to sleep which is when it is really bad but i can cope with this cause it is nowhere near as bad as the actual lab i am still 99.5 percent well but have noticed a little more light headness and feeling of my head not being attached to my body but hey this beats the dizzies and the off balanced feeling i got my magnetic health braclet easy in the uk but not to sure where you would get one from in your country anyway keep smiling and tell yourself you will beat this take care mollysmum

Hi Kathy
Yes, my heart goes out to some of the people on this board too. Some days it was reading others posts that kept things in perspective for me. To answer your questions, no, I have never tried a special diet - I'm hopeless with diets of any type! I have however, kept myself full of vitamins and have tried the various altenative therapies and medication such as echinacea, gingko biloba, magnesium, accupuncture etc.

I was initially diagnosed as having lab by the GP, but after seeing a vestibular therapist she said it was vestibular neuronitis. I have had a CT and and MRI but have yet to have my caloric/ENG tests. Those are on Monday. A neurotologist referred me for those tests to determine whether there is indeed damage in my vestibular system. He has referred me to a physio as he is convinced my neck and headaches (a long term problem) are causing the slow recovery from the dizzies. I'm not convinced but am seeing the physio anyway http://www.healthboards.com/ubb/smile.gif

Yes, i have a full time desk job. I have managed to go to work throughout this ordeal except for the first couple of months where I was off work for about 8 days. During this phase however, I should've stayed at home because I just sat at my desk and stared out the window for a couple of weeks feeling like death.

My bad phases are triggered by absolutely nothing. They seem to be completely random. Having said this however, for the past 4 weeks my dizziness has been constant. I have been rating my dizziness on a calendar for months and on a scale from 1 - 10 it has hovered between 1 and 5 for the past 4 months up until the past month. Now it hovers between 1 and 3 which is a very bearable level.

I have tinnitus in my left ear which is also worse when I wake up. (The left ear is the one I had pain in originally). Luckily it doesn't bother me normally, only when I'm in bed at night and things are really quiet. It seems to be staying constant.

I am 8 and a half months into this and am now convinced I'm getting better. 6 weeks ago I wasn't sure. It's a good feeling. I still have negative days though where I feel quite despondant but those are few and far between now.

Hang in there.

Jen:
Thanks for getting back to me. I ask you these questions because I feel our symptoms are closely related. Oddly enough, I have been suffering with Migraines for about 25 years of my life. Within the past year I was put on a medication called Nortriptalyn
(sp) and that reduced my headaches about 50%. I could easily get a migraine 1 - 2 times per week. Now I can actually go over 2 weeks before I get one. I have a really tough time with them when things just start growing hear in NY and also in the fall when the leaves are coming off the trees. I had actually mentioned that maybe that could have been the original cause when I first saw my GP, because just before I came down with this for about a month and a half I was loading myself up on Excedrin and Imitrex. He didn't think so then but the last time I saw him he thought it could have been a good possibility. When you have the eng done, you will know what true vertigo feels like. I managed to handle it fine and was even hungry after it was done. I also had a hearing test done to see if there were any growths pressing on anything and all was fine. My hearing was perfect. The thing is, you can go to Dr. after Dr. and even if they come up with a diagnosis it's all a waiting game. I know if they diagnose you with the ear disorder where particles get loose in your tubes they can fix that. They actually performed that maneuver on me just in case I may have had that and I had to sleep in an upright position for 2 days. I knew it wouldn't work.
Anyway, my last set back lasted for about 3 weeks and it wasn't as bad as the previous one. I hope that when we are ALL cured that we never have to look this monster in the face again.
I too have been put on a special supplement program by a woman who has been known to cure people when they are at there last resort. I see an acupuncturist once a week and in the beginning of June will be seeing a physical therapist that was recommended. I am on a special diet that consists of eating tons of veggies, no red meat and low carbs and no white sugar. I was also told to watch my salt intake because fluid retention does not help.
Jen: thanks again for getting back to me and I wish you and everybody else a full recovery.

all the best,
Kathy scant5

Kathy

Interesting that you've been suffering with migraines for 25 years. When you say migraines do you mean migraines with the aura prior to the onset of the headache? I get headaches very regularly (5 out of 7 days a week; some severe, some not) but only get migraines with the aura about once every 2 months. Someone else on this post has been diagnosed with MAV (migraine associated vertigo). Have you ever explored that avenue? There is just so much conflicting info on this topic. They physio I'm seeing says that what causes headaches is so closely related to balance that you almost can't separate the two. Well would someone do some study on this so that they can treat it???

Hey Scant,

Something caught my eye whilst reading your post. I see that your migraine is being treated with nortriptyline. I mention this as I was put on this drug 3 weeks ago to treat tempero mandibular joint disorder (the cause of my ear dizzy problems) Right after I started taking it I got dizzy in a way I never have been before - a feeling of motion when still. I stopped it 6 days ago but the dizziness persists. Apparently it takes a while for the drug to leave your system - I was taken off it because of the dizzies. I can't say for sure it's the drug that's done it, but I did a tonne of research and dizziness is listed as a side effect. Generally side effects come on straight away - but I couldn't help but notice you went on this in the last year - just a thought.

Also, Jen is right, migraine can cause major dizzy problems - the condition is called MAV, see Kippers post about 'DEfinite MAV diagnosis.' If your ENG/caloric tests are normal, I'm presuming they are as you have been told your labyrinth is fine, and you have a history of migraine, migraine can sometimes turn in to vestibular migraine. Generally people with MAV have normal ENG/caloric tests (not always) The dizzy attacks can happen separately from the migraine headaches. Have any of the doctors you've seen mentioned this to you? If not, I suggest you see a neuro otologist (ear/dizzy specialist).

Hbeb and jenn:
All my Dr.s and specialists were aware of my migraines.
The things is I believe the treatment would be to try to control the amount of Migraines according to the research I have done on the web. One of the medications they use is Nortriptaline. I take 25mg in the evening and I thought maybe this could have been the cause of my imbalance disorder but I had been on this medication for approx. 7 - 8 months before all of this happened. As far as the type of migraines I get I have never had ones with the so called aura. Until I was diagnosed with migraines and new about imitrex I certainly felt like I could just throw up but I am one of those people who just can't make my self get sick.
I have never had any neck problems throughout this and no ear pain just a slight fullness at times. Over the past few days I have felt remarkedly better, the ringing in my right ear is almost gone and I am definitely feeling less slightly drunk. I know not to get my hopes up to high because I have had set backs.
After my last set back it only took 3 weeks to get back to feeling much better and I am taking that as a show of progress. I wish the specialists would read these boards and maybe could learn something by all the different variations of this dreadful head monster.
Thank you both for replying to my posts and I hope soon we will all be better. Jen; interesting to hear what your tests will show. The only thing my test showed was a slight nystagmus in both eyes when I turned quickly to the left and to the right . The last time I was at my Drs he said there was no more nystagmus as said the other Dr. whom I feel her word is as good as any specialist also said there was no more nystagmus. Right now I don't know if I can handle seeing any more specialists beause I truly believe this is all a waiting game, but I think you should try to take the best care of yourself that you can. Jen: I know sometimes you get despondent but I find you such a positive person and your posts have always made me feel better, so thank you. Hbeb, I find you so incredibly knowledgable that you will probably come up with a cure for everybody before all the so called specialists do.

All the best
scant5, Kathy

Thanks Kathy

It's nice to know that I've made you feel better. I used to search this site for positive messages as they always made me feel better.

I too believe that this is a waiting game and I also reckon that if we wait long enough Hbep will have found a cure! http://www.healthboards.com/ubb/smile.gif

Jen