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Thread: Vertigo Anyone?

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    Post Vertigo Anyone?

    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

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    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!!).
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    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

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    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
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    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

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    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

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    Welcome, James. I'm glad you found us and hope we can help you. YES, I have vertigo attacks, but they are NOTHING like your constant vertigo! Only one was severe enough to really worry me and send me to the ER, as I thought I could have had a stroke. They are relieved and prevented by the medication called meclizine. I do believe they are caused by WG, although it is hard to pinpoint it exactly. I do have some permanent nerve damage in one ear, but that is the "good" ear that currently hears better and causes me fewer problems. In the "bad" ear, the eardrum has completely eroded away due to WG and is subject to minor low-grade infections due to the exposure to outside air, etc. I use antibiotic ear drops in that ear. The ENT told me I'd get more vertigo if cold air or liquids got into that ear. He thinks my inner ear is OK, so the middle ear is more the problem, and it of course connects to the inner ear which is not receiving the right messages. Whatever. I was also told and do find that too much caffeine or alcohol can stimulate an episode; I rarely drink, but sometimes get dizzy after a cup of coffee, which is my signal to quit that for a few days and let things settle down. Another thing that helps is pseudoephedrine, as it keeps the eustachian tubes more open and allows more drainage of buildup in the ears. I could go on and on. But it wouldn't help your CONSTANT vertigo. That sounds so miserable! I wonder if there is any kind of surgery that would help you. My knowledge of all this ends here! It is a real problem and I hope you can get some help. And all of the other issues you've had with WG sound way more severe than what I've had to deal with, as well. I understand ulcerative colitis is an autoimmune disease on its own. There is a movement afoot to look at all AI diseases as a group in an effort to finally discover the causes and possible cure. I hope we may all benefit from that someday, and in any post by Marta, you will see a link at the bottom leading to info on that movement.

    Anyway, keep us posted! I really wish you some relief from the vertigo. BTW, I am 62, just a few years younger than Pete.
    Anne, dx'ed April 2011

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    Quote Originally Posted by Realpro325 View Post
    Good Morning ,
    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
    Hi James,
    Can you tell me what kind of nerve tests you had to confirm the nerves are damaged?

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    Anne,
    Thank you for your kind words and caring response.
    My vertigo is relative to my body movement. The more I move the worse it gets.
    Valium seems to help but only when it gets so bad I can't focus on an object to help me slow it down with my mind.
    This get very tiring.
    James

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    Mom,
    I have had many audiologist test me with all kinds of equipment including a clinical vestibular specialist and I have had a closed MRI that the ENT used to confirm the nerve damage. The tinnitus is just as bad as the spinning. I have three sounds the bell , the ocean. and the crickets.
    James

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