hi all,

have just registered on here. finding it helpful that im not going mad!

BASICALLY, i was diagnosed by my gp in may with labyrinthitis. my symptoms are dizzyness, vertigo, spinnning, full fluffy head, weak legs,i feel like imgonna fall,. i cannnot go in supermarkets. feel im gonna faint. it makes me v anxious,and i panic. im not even a nervous person.

anyway when i got diagnosed i got told it would take 2 weeks. i got given prochlorperazine. after 2 weeks,i was no better, and v scared, and i got told to stop taking the tablets by my gp and get myself better.

the tablets only slighlty helped anyway.

however 7 months on here i am. some days are better than others. i just want to feel better.i try my hardest,but i really do feel like this.and dont know what to do.

any advice?

sarah:(

hi there,
welcome! i know how you feel. I have all those symptoms too.I have been like this since september 05,when i started trying for a baby. I know how it feels when you think you are going mad,its awful. Have u seen an ENT etc or just doc. I was diagnosed with VN but am now questioning hormone imbalance or MAV,seeing doc next monday to discuss. I am determined this new year will be my time,i have suffered long enough! Its hard coping sometimes,i have a 17 month old too so it makes it all the more scary as i want to protect my little girl,not feel like im gonna faint all the time!Some days i am nearly 100% and i feel great but that is very rare. Are you on any meds at all? I am on cipramil for my anxiety,it helped at the start but isnt really helping anymore.
take care
maria

Maria, similar story. Got these symptoms when I was 8 months pregnant. First diagnosed with vn, now the past two weeks after seeing a specialist in Boston, MA usa...diagnosed with MAV.

i been following your story charlotte and i think we are pretty similar,how are the meds going? I am really wanting to knock this junk on the head this year,feel like i have suffered for too long,we all have! New year,new start! Any side effects from the nori as yet? Whats your take on the hormone route? i am really gonna push my doc for options,i feel like unless i say to them nothin is gonna change! The hormone route really makes sense too-pregnancies-bc stopped etc,suppose it throughs us off. What symptoms do you suffer daily? and hve they eased any since starting the nori?
maria
x

Hey Sarah, Have you gone through the vestibular rehab route?

Maria I have no side effects, don't notice any at all. I did do vrt therapy for 16 months before I tried this. Have you seen a neurotologist, they really know about vn/labs/mav....

I am not surprised hormones could be adding to this at all. I know hormones can really trigger many things. I was 8 month pregnant and gained loads of water weight...so both could have added strain.

Daily, I suffer from eye strain, eye flickering/shimmering, woozy/full head feeling. Prior to starting meds/ and slowing down my pace watching triggers...I felt much more off in stores, terrible nausea all the time...and I would have my symptoms ramp up more easily. I felt my bad moments were much worse, and my good moments were not as good...make sense? Honestly, I feel that just stopping vrts and resting more helped the most. I am only on day 5 of the meds...I hear they don't work much until 3-6 weeks...

Wishing you the best.

Hi SarahLouise
we all wish it would end! If it is labs or vn then most people with that do find that vestibular therapy can really help. You are not alone in finding supermarkets etc really stressful but over time it will improve. As you say you get anxious and start to panic it might help if you go with someone for a while - I think a lot of us fear getting dizzy in public and maybe you would benefit from the reassurance of someone being there to help if needed. Also stay as active as possible. Do you normally take lots of exercise?

Where are you in the UK? My advice would be to go back to your gp and ask for a referral to a neuro-otologist. Their speciality is inner ear/balance problems. Don't get fobbed off with just ENT, I wasted 2 years that way. The trouble is that there aren't many of them. My gp didn't know any but was happy to write a letter if I told her who I wanted to see, so I chose London. If you are in the Midlands there is a good one in Leicester. And if it isn't labs or vn then a neuro-otologist will be the best person to get to the bottom of it. But as you are still struggling after 7 months then it sounds like you are not one of the lucky ones who get better quickly but in for the long haul so you need help.
best wishes

I understand your feelings and your pain. I, too have labyrinthitis and this is the sixth month of it. Find a good, understanding otologist or neurotologist and ask them about being put on lasix (also called a diuretic). If that doctor won't do it, go to the next doctor. You have to take charge of your health and find a doctor willing to help you and who is knowledgable of this. My otologist here in the U.S. (Oklahoma) put me on furosemide 20 milligrams (That is what they call lasix, or a diuretic) and pottassium 10% liquid. The furosemide basically drains the fluids out of all the tissues of your body...your heart, your kidneys, and finally your inner ear. Let me tell you... it works. It took about two months, (I had already had labyrinthitis for four months at that point and could barely function). My doctor told me to just be patient because it did take a while, but by that second month of the medication, I went from feeling like I was bobbing around all over the place, dizzy, full of anxiety, floor moving, light sensitivity, etc. to feeling much better. Last week I felt another improvement and my feet can feel the floor like almost normal, without that horrible feeling as if the floor is moving and tilting. I still have a little imbalance/eye flickering, but I can go out to eat at night again and can walk around the second floor of the mall like normal, without feeling all sweaty and dizzy and like I'm afraid of heights, which I never was before. It is EXTREMELY IMPORTANT to cut salt out of your diet in every way you can. Eat an apple a day, something healthy and green like spinach, porridge and nuts for breakfast, plain old meat like chicken or beef without added salt or sauces, a potato (without salty butter)or brown rice and other natural foods. Salty, processed food will make your condition linger. You need to clean out your system. Salt makes you retain fluids and the excess fluids in your inner ear is what makes the problem hang around. It is VITAL that you drink about 6 to 8 glasses of water a day. Believe me you will feel better. Vestibular excercises do work if you give them a chance. Don't give up on them. The Cawthorne Cooksey exercises help you regain your confidence and you need to keep your body moving. You need to fight this sickness with everything you have within you, Sarahlouise. Take a good multivitamin like Centrum every single day and be faithful about it. I will pray very hard for you and your recovery. Please don't feel discouraged. I know you will get better. I tell you, just a few months ago, I felt so sick that I was crying almost every day and praying God would give me an answer, and that's when I found a doctor who gave me the right medication and the emotional support I needed. That is also when I found the inner strength to get up and do the vestibular excercises. (A really good excercise is the one where you close your eyes and try to walk heel to toe, as if your are walking on a balance beam with your eyes closed). It will work all that nervousness out of you if you can do the exercises just a few minutes a day. I went from shaking like a leaf when doing the exercises to feeling ok within a few days. Believe also, that there is a loving God out there who does hear and answer prayers and He is there for you if you just call on his name and believe He will carry you through this. Take good care of yourself, ok? Ruby.

I too Like Maria started with this in September 05. . .seems such an age away now, I am at last starting to feel better, thats a lot better actually and some say that the average time to recover from vestibular damage is 2 years. . . my advice stay calm, keep busy, eat healthy and don't give up on the things you cant do now, jut keep trying them again and again until you can do them.
Hope you feel better soon.
Jayne
x

I understand your feelings and your pain. I, too have labyrinthitis and this is the sixth month of it. Find a good, understanding otologist or neurotologist and ask them about being put on lasix (also called a diuretic). If that doctor won't do it, go to the next doctor. You have to take charge of your health and find a doctor willing to help you and who is knowledgable of this. My otologist here in the U.S. (Oklahoma) put me on furosemide 20 milligrams (That is what they call lasix, or a diuretic) and pottassium 10% liquid. The furosemide basically drains the fluids out of all the tissues of your body...your heart, your kidneys, and finally your inner ear. Let me tell you... it works. It took about two months, (I had already had labyrinthitis for four months at that point and could barely function). My doctor told me to just be patient because it did take a while, but by that second month of the medication, I went from feeling like I was bobbing around all over the place, dizzy, full of anxiety, floor moving, light sensitivity, etc. to feeling much better. .

I just wanted to give another point of view because everyone responds to different things and recovers differently from this, but I had no effect from a diuretic and low salt diet. I was put on it for a possible diagnosis of endolymphatic hydrops but it had no effect. My original diagnosis of VN was I believe correct, and my problem wasn't fluid, but damage to the vestibular nerve and visual-vestibular system. I don't have any symptoms anymore.

I just wanted to say to SarahLouise and all the Labyrinthitis and other inner ear disorder sufferers to not give up hope. Yes, not everyone responds to the same medication and the exact diagnosis is sometimes tricky since they can't always tell you the exact problem even with testing. The best case scenario is where your symptoms do resolve on their own, as in the case of Joni and her vestibular neuronitis. They say that many of these ear problems do resolve on there own spontaneously. I also read one article that really gave me the hope I needed to get up and get moving. I read that as long as your nervous system is not impaired, (i.e. as long as your spinal cord is functioning) that you can get better with vestibular exercises. Even if you can only lie down and do leg lifts and stretches, then do it and slowly build up to standing up and doing simple exercises. (That is if your doctor says it is ok for you to exercise.) I also wanted to say that my co-worker knows a lady who has had Meniere's disease for over twenty years and she is able to function and work and lead as normal a life as she can by taking nutritional supplements, vitamins and herbs. It's all homeopathic stuff like gingko biloba, manganese, etc. I personally have also tried a multivitamin called Optivite PMT for women which I heard helps people with Meniere's (although labyrinthitis isn't exactly the same as Meniere's). I stopped taking it though, when my doctor put me on the diuretic, furosemide, because I thought that would be overdoing it, because the diuretic makes you need to urinate more often than usual, and so does just one Optivite tablet. Again, I pray for everyone going through this to stay strong and really have a positive outlook and the expectation of getting better. I know the symptoms are very scary, nerve-racking, and sickening, but try not to focus on them all day and keep your mind occupied with things that you enjoy, because I also read a research article that said that those who have a positive outlook about getting better, usually recover faster. Even if it is hard to believe that now, keep repeating to yourself that you are going to get better and stronger, until you DO believe it. Again, you are all in my prayers.

hi sarahlouise2

i've got the labyrinthitis, and was also given prochlorperazine. 6weeks now (doctor also said to me i'll be better in few weeks...) and i'm not really better at all. not as bad as the first 2weeks i had it. but i could see no end to it, and getting depressed...

i tried drinking hearbal tea with honey and this kind of helped me feel little bit better. i have bad nausea and dizzyness, so i cant eat much, even after i take the medicine. annoying isnt it when there isn't a cure for this...

As long as your have the proper diagnosis, vestibular rehab exercises are the most effective way to speed up recovery. The sooner you start them also the better.

I wish, as Ruby had said, that I recovered spontaneously over time. In fact it took 20 months of retraining my nervous system through vestibular rehab and vision tx.

Good luck!

Hi rdi
was it your gp who said you would be better in a few weeks? That is a very unwise thing for a gp to say - although some lucky people do have one attack of labs/vn and recover quickly you will realise from reading threads on this board that for others it is a very long haul.

Recovery is all about rewiring your system, so the brain learns to cope with the signals that are coming in from what may be a damaged vestibular system. During the acute phase prochlorperazine is often given for the nausea and dizziness but it is best not to stay on this for too long and when you come off it do it slowly. The longest I was told to take it for was one week and then only use it when I absolutely have to. I felt sick for months but it will go eventually.

As JoniMichelle says, get going on the vrt and stick with it. The earlier you start the better and you mustn't give up on it. I didn't get started until I had been ill for 15 months, I was a long time waiting for a diagnosis and nobody told me about vrt, and I have now been doing them for 12 months. The first thing to improve was the nausea and wobbly floor, and now I am working hard to get my eyes to work together. Waiting times for a pt on the NHS can be long so if you have insurance or can afford it I would recommend you go privately and if you can find someone who really understands balance issues that will help.

I see you are in the UK. Are you anywhere near London? My advice would be to go back to your gp and tell them you want a referral to the neuro-otology department at the National Hospital for Neurology and Neurosurgery in Queens Square. I got an appointment within 3 weeks of being referred. These are the real specialists, do not waste any time with an ENT specialist. I think there is also a good place in Leicester.
good luck

As long as your have the proper diagnosis, vestibular rehab exercises are the most effective way to speed up recovery. The sooner you start them also the better.

I wish, as Ruby had said, that I recovered spontaneously over time. In fact it took 20 months of retraining my nervous system through vestibular rehab and vision tx.

Good luck!

JoniMichelle
was do you mean by vision tx? Like you, I have vn and I am getting so much better but the thing that seems to have got worse is my eye coordination. The Halmaygi head thrust test showed left eye saccades catch up and the ENG and caloric tests showed a strong right side preponderance. I just have the strange feeling sometimes that my eyes aren't 'talking' to each other.

hi dollydd

ya, it was my gp who said i would be better in few weeks. he even gave me antibiotics for it since he said it could be bacteria causing labyrinthitis. after a week of it, it didnt make me any better, and he said it must be virus caused it, and that nothing can be done. he then priscribed me prochlorperazine for 3 more weeks after the first 3weeks.

i live in essex, so quite close to london. thanks for the advice, i will speak to my gp tomorrow to get referral to the hospital in london. I see they are specialist so I hope they can really help me with this. People around me don't believe I have such condition for so long...even nurse said it should be gone within few weeks. I'm so depressed about lack of knowledge between these nurses and doctors.
thanks and good luck to you too!

it might help to have a specialist name. Dr Rosalyn Davies is meant to be terrific but I didn't get to see her, I was seen by Dr Bamiou. At the time, I really didn't care who it was, I was so desperate after 2 years of misery, gp's and ENT's who didn't know what was going on. They saved my sanity, it was so great to talk to people who actually understood what I was describing and gave me answers.

hi dollydd.
did you have ear pain and inflammation even after 6-7 weeks of having labyrinthitis? I'm having terrible pain which comes and goes throughout the day for all these weeks, as well as the dizziness, nausea and headache.

Hi
no I was pain free at the time I started with the spinning vertigo and violent nausea. The real discomfort kicked in with the onset of acute sinusitis, about 6 weeks in, but no earache or headache.

How did you get on with trying to get a referral?

hi
my GP said to me that no point in referal to specialist because the treatment will be the same. he's not sure about VRT....he gave me antibiotics before and it didn't work, this is 2nd antibiotics I'm on trying to releave this ear inflammation. He said it's bacteria causing the labyrinthitis. He said it since the 3rd week when I came down with this. my ear pops all day along for this 7weeks..+pain and dizziness and nausea...feeling very depressed thesedays. I made an appointment to see private clinic in london who said he will introduce me to specialist straight away. im final yr uni student and i dont think i can graduate this yr...i cant study with this at all...prochlorperazine was good until it started to give me side effects to my heart and GP said dont take it anymore...so im just on antibiotics which is not doing anything..:(

Hi
the reason to see a neuro-otologist early on is to get tested, I think the results can be more accurate if they are done in the acute phase, and it sounds like you may still be in that. Think one of the problems many of us on this board have had is not getting tested out the outset and we are in the chronic recovery phase by the time we get a diagnosis. You may well have an associated bacterial infection so antibiotics should help in time. But your gp is wrong to say that there's no point in seeing a specialist because the treatment will be the same - if it is labs or vn there really isn't any treatment as such, just time, and it can be quite a long time, and clinical trials have shown quite clearly that those who do vrt and stay active do better than those who don't. I felt sick for months but that went away very quickly after starting vrt.

Try and keep going with your studies - I think it really helps to have something to focus on, it is easy to become obsessed with this conditon so that it fills your thoughts 24/7. You are at 7 weeks now and you may be one of the lucky ones who recovers after 2 or 3 months.