Vertigo Anyone?

[Realpro325]

Hello Everyone,
My name is James and I am very glad to have found this forum dedicated to our elite group of troubled bodies that are in dire need of someone who understands.
I was diagnosed back in August 2014 after three years of constant sickness that continues still. I am currently on methylprednisolone , methotrexate ,and Rituxan along with a host of other drugs.

It's my understanding that my doctor has labeled my case as very complicated as you will see when I list some of my symptoms in an effort to find someone with similar Vertigo and nerve damage. The last three years have been very painful as my disease progressed even without my knowing what was wrong all the while this voice in my head tells me it must be connected. It started at age 25 with high blood pressure/ angina along with two ruptured disks in my lower back and years of sinusitis and ulcerative colitis off and on then more recently over the past three years extreme ulcerative colitis and then an attack on my nerves that left me totally deaf in my left ear and then I lost 66% of my balance due to more nerve damage that causes my brain to think I am moving when I am still thus the constant vertigo. I wake up every day with three different levels of tinnitus(Ringing sounds) in my head along with the world around me spinning. I now have four possibly five ruptured disks in my lower back and Rheumatoid arthritis in every joint but mostly worse in my legs. I almost lost the sight in my left eye due to uveitis but I found an ENT doctor that new what to do and saved my sight. I have severe muscle cramps and involuntary movement every day that seems to be getting worse. There are some tumors growing on my ankles and my face and neck and back that seem to pull like a cramp but mostly just tense up at times.

I could go on and on with more complaints and symptoms but I am very tired and just want to get this posted. I am grateful for each day I have breath to breathe and life to live. it would be nice to hear from someone else in a similar condition that might have better news than my doctor.
Best Regards,
James
Concord NC USA

[Pete]

Welcome, James!

Wow, you've had a rough row to hoe. Do you have a vasculitis specialist on your treatment team? If not, you can go to VF Medical Consultants to find one who will consult with your team. Also, there are specialists listed who are at Duke and UNC Chapel Hill. They will consult with your local doc for free.

I'm a bit older than you (68). I was diagnosed four years ago after a much briefer disease onset. I had the ear infection that wouldn't go away, followed in quick succession by a dry, unproductive cough, and night sweats. I've never had uveitis or the skin lesions/tumors you mention. I had cramps in my hands, primarily as a result of high-dose (necessary) prednisone. At this point, I'm in a medication induced remission. Fortunately, I feel as well now as I did before I got sick.

At any rate, you've come to the right spot. There's someone on here virtually 24/7/365 as there are members worldwide. Feel free to ask questions, get advice, or vent your frustrations.

Good luck and better health (soon!!).

[Realpro325]

Hey Pete,
I do not have a vasculitis doctor that I am aware of but it would not surprise me if my rheumatologist is consult with someone as we have many medical experts here in NC and she is very knowledgeable about my situation.
I also have night fever and chills.I was diagnosed with granuloma anulare back in 2000 and no one ever mentioned a rheumatologist back then.
There are so many more problems I have I can't remember them. My throat closes up, my hands and feet hurt so bad I can't use them sometimes.
My vertigo gets so fast I can't stand up and fall to the floor. What hurts the most is when family and friends look at me and say if you would loose some weight everything will be ok, or someone says just call if you need me and then you call and they never call you back.
Thanks for the reply Pete and have a great week.
James

[mishb]

Hi James and welcome to the forum.

So glad that you found it.
Good golly you have had your fair share at a young age.

Finding a specialist who knows WG is a must.
Check out the stories on this forum, many will sound so familiar to what you are going through.

There is someone on here 24/7, thanks to the world wide web - we come from all over the place.

Take care James and we look forward to hearing more of your journey with WG

[mrtmeo]

What kind of treatment have you had?

If the vertigo is not from the vasculitis, you could try this

Epley Manuver
https://www.youtube.com/watch?v=hq-IQWSrAtM
and
Brandt Daroff
https://www.youtube.com/watch?v=hhinu_oU_hM

[Realpro325]

Good Morning ,
Thanks for the kind words Michelle. It is comforting to read some of the stories on here.
My vertigo is permanent from nerve damage the treatments you are mentioning are for BPPV which I do not have.
Thank you for the info.
James

[Realpro325]

mrtmeo,
I did have nerve conductive test done along with full hearing test on each ear and set of nerves with each visit to the ENT during that time for a total of six or seven test to confirm the constant and permanent vertigo diagnosis. The doctor offered a surgery but I am already deaf and totally removing the connection is a 50/50 shot a helping me and he did not feel it would work and that the risk was to great during my current condition. Is there anything you think we are missing?
Thank you for your interest and help,
James

[Sherry B]

James, I just moved to Kannapolis, NC in July. Hello neighbor. I was diagnosed with Wegners back around 1980 and have gone through various health-related issues since that time. About a year ago the vertigo started. After lots of research I discovered that it was one of the bad side effects of one of my meds, Imdur. Once I persuaded the docs to take me off the Imdur, the dizziness has been much better (plus, thankfully, I have people praying for me). Within the last 6 months the "sounds" in my head include music that I hear 24/7. It's mostly old time hymns, patriotic music, Christmas carols. For the most part, I'm learning to tolerate it. I sympathize with you and wish you well. NEVER give up! Keep fighting! Every breath is worth the effort. God Bless you!

[annekat]

Sherry, welcome to the forum! I'm not familiar with Imdur, but maybe it's a brand name for a med I've heard of. Will look it up. Anyway, I'm glad the dizziness and vertigo are better, though sorry if they are not gone. I've been lucky enough not to have any vertigo for awhile and think it was because of some stuff going on in one ear that has resolved itself in some ways. I just know that vertigo is a pretty common phenomenon with a variety of causes, and even ENTs are not always that great at saying what is causing it in any particular case. That music in your head, though, is pretty weird, and I don't know which is worse, but I guess I'd have to take the music over the vertigo! It is bizarre, though. Aside from all that, you have had WG a lot longer than most of us, so you are a veteran, and I'm sure we can learn a lot from you!

James, I hope you are doing better since we last heard from you! Let us know, if you can.

[me2]

Hi Sherry B,
Welcome.
I recently saw a video on a new treatment for tinnitus. It involves some device that compensates for the hearing loss that is causing the brain to generate the illusion of sound. The device, as I remember, shifts frequencies that cause different parts of the brain to get used and disrupts the constant message from the ear.
I'll try to find the info on that. I want to talk to my hearing doc about it since I have tinnitus.
I had vertigo briefly so I very much sympathize with that condition. It is not fun. Mine went away as mysteriously as it began. I suspect a viral infection contributed but I really have no idea.

So your music thing got me to wondering if there might be a simular solution. I found this interesting article:
Tinnitus: Can't get a tune out of your head? Tina had that for 30 YEARS... only to discover that the cure is surprisingly simple | Daily Mail Online

Of course I have no idea of the veracity of this article but it sounds easy enough to try.