It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Inner Ear Disorders Message Board

wishing it would end


Post New Thread   Closed Thread
LinkBack Thread Tools Search this Thread
Old 01-02-2008, 08:37 AM   #1
sarahlouise2
Newbie
(female)
 
Join Date: Jan 2008
Location: uk
Posts: 1
sarahlouise2 HB User
wishing it would end

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

 
Sponsors Lightbulb
   
Old 01-02-2008, 09:47 AM   #2
maria1007
Senior Member
(female)
 
Join Date: Mar 2007
Location: teesside,cleveland,UK
Posts: 178
maria1007 HB User
Re: wishing it would end

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

 
Old 01-02-2008, 10:12 AM   #3
charlotte67
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: maine, usa
Posts: 1,166
charlotte67 HB User
Re: wishing it would end

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.

 
Old 01-02-2008, 11:03 AM   #4
maria1007
Senior Member
(female)
 
Join Date: Mar 2007
Location: teesside,cleveland,UK
Posts: 178
maria1007 HB User
Re: wishing it would end

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

 
Old 01-02-2008, 03:38 PM   #5
Joni9921
Veteran
(female)
 
Join Date: Dec 2006
Location: NJ
Posts: 371
Joni9921 HB UserJoni9921 HB User
Re: wishing it would end

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

 
Old 01-02-2008, 04:04 PM   #6
charlotte67
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: maine, usa
Posts: 1,166
charlotte67 HB User
Re: wishing it would end

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.

 
Old 01-03-2008, 08:41 AM   #7
dollydd
Senior Member
(female)
 
Join Date: Feb 2007
Location: newport pagnell, UK
Posts: 120
dollydd HB User
Re: wishing it would end

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

 
Old 01-19-2008, 08:48 PM   #8
Ruby08
Newbie
(female)
 
Join Date: Jan 2008
Location: edmon,ok
Posts: 2
Ruby08 HB User
Re: wishing it would end

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.

Last edited by Ruby08; 01-19-2008 at 08:53 PM.

 
Old 01-20-2008, 04:48 AM   #9
sheriff56
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: Stourbridge, UK
Posts: 593
sheriff56 HB User
Re: wishing it would end

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

 
Old 01-20-2008, 09:02 AM   #10
Joni9921
Veteran
(female)
 
Join Date: Dec 2006
Location: NJ
Posts: 371
Joni9921 HB UserJoni9921 HB User
Re: wishing it would end

Quote:
Originally Posted by Ruby08 View Post
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.

 
Old 01-23-2008, 04:54 PM   #11
Ruby08
Newbie
(female)
 
Join Date: Jan 2008
Location: edmon,ok
Posts: 2
Ruby08 HB User
Re: wishing it would end

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.

Last edited by Ruby08; 01-23-2008 at 05:00 PM.

 
Old 03-02-2008, 06:44 AM   #12
rdigir08
Newbie
(male)
 
Join Date: Mar 2008
Location: UK
Posts: 5
rdigir08 HB User
Re: wishing it would end

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...

 
Old 03-02-2008, 01:44 PM   #13
Joni9921
Veteran
(female)
 
Join Date: Dec 2006
Location: NJ
Posts: 371
Joni9921 HB UserJoni9921 HB User
Re: wishing it would end

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!

 
Old 03-03-2008, 04:15 AM   #14
dollydd
Senior Member
(female)
 
Join Date: Feb 2007
Location: newport pagnell, UK
Posts: 120
dollydd HB User
Re: wishing it would end

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

 
Old 03-03-2008, 04:21 AM   #15
dollydd
Senior Member
(female)
 
Join Date: Feb 2007
Location: newport pagnell, UK
Posts: 120
dollydd HB User
Re: wishing it would end

Quote:
Originally Posted by JoniMichelle View Post
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.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Wishing everyone a positive holiday season! brendaks1 Back Problems 2 12-27-2009 12:03 PM
Trying to understand Fibro while wishing I could fix it Karebear2u Fibromyalgia 6 09-25-2008 04:41 PM
Wishing things were better steamrollhehe Bipolar Disorder 24 02-03-2008 09:29 PM
Wishing everyone here well reachout Addiction & Recovery 12 09-16-2007 10:42 AM
Wishing Martha an enjoyable trip! Sandyspen Alzheimer's Disease & Dementia 9 03-15-2006 05:33 AM
dad makes me wait & suffer...wishing i was normal finkydinky ADD / ADHD 15 01-22-2006 10:32 PM
Wishing... melody Depression 8 03-24-2005 05:54 PM
19 days and wishing life away.. Tiddgys Pain Management 6 07-27-2003 06:19 AM
Wishing You All An Wonderful Holiday & Happy New Year guaichy Fibromyalgia 1 12-27-2002 03:12 PM




Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 07:12 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2017 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!