Vestibular Neuritis- any recovery stories?

Not sure about VN, but if a therapist or doctor did the Epley correctly, you should not have good days and bad days. A succesfull Epley is when the crystals go back into where they are supposed to be. You might be dislodging them, but in that case you would not be better until you had another Epley treatment. 

The neurologist told me that maybe new crystals are getting out of place. So it's a guessing game what is happening, but a successful Epley would (or should) fix BPPV. Good luck, feel better.

Hi Tina. I have very similar story – even down to it all starting on Xmas Eve, which was my first visit to A&E! Have seen a lot of doctors and been told labyrinthitis and that it should go away in 3-6 weeks, but three months in I still have it. Last doc said it was BPPV since it had lasted so long, but I don't think he knew what he was talking about and I think it is VN. Am hoping to get apptment with ENT and eventually work towards seeing a neuro-otologist, though GPs have refused to refer me so far.

I've had ups and downs throughout, though as I'm more used to it and less anxious now (thinking it was stroke/heart attack/MS) it's not as bad as it was in the dark days of January. Am also wondering if it will ever go away, but people on here seem to show improvement over the months. I thought I'd beaten it last week and last couple of days have been dizzy with bad sleep.

If it's not BPPV the Epley won't help, but VRT should, from what I've read. Personally I don't feel I've got a proper diagnosis and am trying to work towards that as the next step.

I find these talk boards very useful, so thanks to you and everyone for posting.

C

 

PS just seen very good ENT doc who tested for BPPV (I didn't seem to have it at the time) and said it's probably labyrinthitis/vestibular issues and it will DEFINITELY go away, probably for good, though it may take a few months. She didn't recommend Vestibular Rehab Therapy in my case, but said the main thing for people with the condition was not to make your world smaller: you have to keep going out, exercising, cycling, going to supermarket where possible, as activity both redistributes fluids round the body and gives your vestibular system the workout/physiotherapy it needs.

Bizarrely, she said walking/running through trees and towards oncoming traffic (not in the road!) are both good, as is swimming – if the outer ears have no problems – since the challenge to the system will help recovery. Also she said should have my eyesight checked out in case of astigmatism which could make it worse, and avoid alcohol.

First proper, unsceptical doctor who knew what she was talking about. Main thing is it will eventually go away, and the fact that I had had a few good days meant it was on the wane.  

All best wishes,

C

 

Hi James,

I see Mr Rea at the London Road clinic or Spires in Leicester.  He is the top man in the country for these types of conditions and he has helped me.  After 15 months I now feel on the road to recovery, strill a way to go but getting there.

For information Mr Rea is featured in  a channel 5 documentary on .31st March helping a lady who has suffered for years with dizziness, the program is called medical mysteries.

All the best

Laurence

Don't mean to butt in but, Cally no longer monitors posts on the site. The VRT is a good start and should help in the recovery process. It does get better but, it will take time and it is a very slow process. It will not correct itself over night as it began.

Another thing to try is to reduce your sodium intake and to keep as active as possible. If you are taking any vestibular suppressants, meclazine, anti-very, etc., you need to try to stop those. These suppressants will delay compensation. Also, make sure to drink plenty of water. Your vestibular system will have to have time to adjust to a change in the signals from your inner ear.

It will get better. The medical community doesn't know a lot about the condition or how it needs to be effectively treated.

Anti-vert is the other medication. Auto correct thinks it knows what I am trying to type.

Thank you for the advice! I think I drink enough water but I know my diet has been horrible since I just want to grab something quick to eat and not cook. My doctor prescribed promethazine but it just makes me drowsy and doesn't do anything for the dizziness. I have bad allergies and I think that contributes also to my "really bad" days like yesterday and today. The physical therapist also told me I have a horrible stiff neck which is a contributing factor. It's hard to think that it's already been 9 weeks and will still take more time but hopefully therapy will speed up the process.

The stiff neck is caused from the musles trying to compensate for the vestibular loss.  I see a massage therapist that has helped that tremendously.  Promethazine is an antiemetic and vestibular sedative.  i would get off od f it as soon as possible to not inhibit the compensation process. have been dealing with VN for 2 years.  You may recover sooner but, there is no set timeframe.  Jst take it day by day.  Allergies also affect me as well as barometric changes.  I have more issues when I am experiencing sinus problems.  A steroid usually leas those issues forme and helps jump start my continued progress in recovery from VN.

Hey Jennifer! So sorry your goin through this. I had the same thing happen. Last September had real bad sinus cold. Few days later got hit with massive blow of dizziness. Now it is 7 months later.. Last few have been definitely better than the first few.. Still deal with constant dizziness, headaches.. No spinning but floating and falling sensation. Like I'm in a boat constantly. Soon will take another test where there trying to rule out Meneires disease

That's exactly how I feel. I haven't had vertigo in the sense that I'm spinning but the floating feeling scares me so much. Sometimes it's worse when I lay down. It's so hard to explain. Last week I felt so much better and this week has been so discouraging. It's the worst I've felt. Another weird symptom is that my ears are so sensitive to certain pitches which is causing tinnitus. Usually gets worse throughout the day. I am really hoping a combination of exercises and massage for my neck gives me some relief.

I'm going to start seeing a massage therapist next week so I am really hopeful that will help. I have a lot of pain at the base of my skull and have always had a tight neck. Have you noticed any particular foods or herbal supplements that help?

I have a 2000mg restricted diet of sodium each day.  In addition to that I take ginkgo and an 81mg aspirin each day.  I also supplement liquid vitamin D and was drinking ginger tea for nausea.

If you have a falling or floating feeling when you lay down you may want to try propping up on a couple of pillows when you sleep.  That helped me.

I have tried ginkgo and that has helped me most days. The floating is at its worst this week and I don't understand. I do feel like I'm fighting off a cold/ having bad allergies this week so I tried taking a decongestant. The constant sense of floating and falling is completely disorientating. It's such a scary feeling. Sometimes when I turn I feel like my legs could float right off, especially when I turn towards the direction of the damaged ear. When I try to explain it to people they think I'm crazy. If I could find the slightest bit of relief from that I feel like I could handle the other symptoms. I will definitely try to prop myself up at night.

Terry, can I use this thread an ask you a couple of things?

At five months from first symptoms, a private ENT consultant has given me a "differential diagnosis" of [I quote from his letter] "1. vestibular events and vestibulopathy 2. Panic attacks 3. Paroxysmal dysrhythmia" and recommends further audivestibular tests. Meantime - as I explained to him-  I have muscle spasms in arms and legs, as well as joint pain (shoulder, wrists), stomach upset, palpitations, ectopic beats. He referred me for MRI which came back normal, as have general blood tests and a 24-hour ECG (tho there were no palpitations at this time).

I went to see an osteo today for muscle problems in shoulder and forearm, he told me that my nervous system was "hot" [ie working at full capacity] and said I should oush for referral to neurologist at the earliest opportunity. Plus, since I travelled to Africa a bit last year, I should get screening for tropical viruses too.

The osteo is not a doctor, but what he said chimed with me, since I have all these muscle tics, muscle pain and fatigue. I don't believe they are caused by anxiety - they're just way too specific, and come at times of little stress.

Do these sorts of neurological symptoms match up with anything you have had? I wonder if I have been misdiagnosed and have some sort of tropical virus attacking the nervous system instead. But getting to see anyone who is specialist is very difficult -  my next available GP appointment 3 weeks away!

Since you were seeing so much progress, I woud definitey say that it is the coldsinus that is currently affecting you.  I believe that you will feel better when that clears up.  I highly recommend prednisone/decadron if you are not opposed to taking it.  When I experienced a bad cold or sinus issue it got me back on tack.  Anything that adds fluid to your inner ear is going to negatively affect the VN.

I know that this condition causes a lot of anxiety and that anxiety causes a lot of mysterious pains throughout the body that we might not neessarily associate with anxiety.  While recovering from VN I have not experienced any of the symptoms that you mention, though.  It did cause my neck to have pains and spasm.  From my neck it also hurts into my shoulder but, I have had past pain in my shoulder as well.  While recovering I also have experienced ligament pains in the calf of my legs.  This usually comes on when I over do something though, causing the muscles to have to work against the vestibular imbalance.  I can usually treat that effectively with heat.

My symptoms have been typical VN with onset vertigo, a heavy head, fogginess, imbalance, headache, dizziness, bouncing vision, etc.

Wouldn't your blood test show something that may have been picked up or did he indicate that a specific test would need to be done to determine that?  Did your issues begin with vertigo? Do you experience Oscillopsia?   

I'm not opposed to taking anything at this point so I may try that. I've always had issues with fluid in my ears and sinus drainage due to allergies so I'm sure that's what's dragging me down. Did you have problems with tinnitus or sensitivity to sound?

I have had tinnitus for years but, yes after VN I have experienced several occasions where my ears are overly sensitive to sound. Sometimes to the point that it hurts. This is especially prevalent when I am experiencing sinus problems or a drastic change in barometric pressure.

No oscillopsia, no. On Christmas eve I went to A&E with palpitations and dizzy sensations. They did an ECG and tested my blood for a heart attack and found nothing. Around Jan 5, I woke up in the night with a sharp headache and dizziness and felt like I was bumping into things when I got up. I had the dizziness pretty much constantly for more than three weeks, then went to drive son to football and had nausea and dizziness and tingling/numbness in my left arm, and went back to A&E, where once again they found nothing wrong having done basic neurological checks (walking in a straight line, tapping knee etc). 

Six weeks in my heart started doing a lot of ectopic beats and I had throbbing head/palpitations (heartbeat so strong I felt my body was shifting with it!). This period coincided with a lot of exercise, and went away a week later. Palpitations have come back less severely now, about 20 weeks in. 

I don't really feel dizzy. I do quite a lot of exercise. My vision and hearing are fine, but muscles, heart and stomach not.

Osteo didn't suggest specific blood test, no - I don't think he knows enough about that, and neither do I. I thought about Lyme's but symptoms don't seem to match. I did tell all docs I had been in Africa, but they didn't do any particular test related to that and I don't know if general UK bloods would pick things like that up..

Other VN sufferers seem to have had heart palpitations and muscle pain, but, like you, most seem not to; it's more dizziness and eyes. A GP said my heart issues were completely separate to labs, but it seems too much of a coincidence to me as I never had them before. I can believe anxiety creates panic attacks and can cause palpitations in certain circumstances, but not that it has caused these neurological and muscular problems.

The osteo - unprompted - said it felt like I'd had a car crash, or similar trauma to my head/neck. I haven't.

Hi Jennifer 

I am also a new poster but looking for some encouragement and thoughts from everyone. I particularly like Terry's posts. I have been feeling off balance and quite nauseous for about 9 weeks as well. I also feel incredibly anxious and find it hard to sleep as my head spins when I am lying down. I have been taking sleeping pills but then I started to get tingling hands, night sweats and  tremors so I think I need to come off them. Has anyone else had trouble sleeping becauseof spinning? Other than that I feel incredible fatigue and just not myself. I have started some of the VRT exercises. Need some ideas on how to cope with this as my life has changed dramatically. I saw an otoneurologist who said my ear tests were fine as well as brain scan so he was not able to offer advice.