not sure if this applies — couple of years ago I had what I thought was motion sickness or vertigo — saw my primary care doc and he sent me to a vestibular therapist — the crystals in my one ear had become dislodged from where they were supposed to be in the ear canals, and after about 5 or 6 treatments, it was gone and I have not had it since — I'm not saying this is your situation, but it might be worth checking — fortunately I belong to a large clinic with a large PT department, which had only 2 of these therapists — there is extra training/schooling needed for this type of therapy — good luck

on another note — when you look for a neurologist, by sure to ask for a neurologist that knows about or has treated neuropathy — the person on the phone will say, 'they all do' — NOT TRUE — it took me a long time to find a neurologist that actually knew something about neuropathy — we really do need to be our own advocate and keep asking == and so important to always take someone with you to take notes when you visit any doctor or clinic

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@jesfactsmon Hi Hank, absolutely but you know we always want to improve on what we have. I know I will never be able to get as active as I once used to be. I was thinking I could tolerate more activities by not having the motion sickness. I am lucky in a sense that my neuropathy is not becoming progressively worse since the underline cause was the surgical repair of my AVM. The problem with AVMs is not having sufficient data to be able to follow a recovery regiment because of the survival rate being so low. There can be so many different cases. The cerebral AVM can occur anywhere In the brain involving different blood vessels. Basically, I was left on my own to learn about my recovery. My medical team of neuro surgeons and doctors provided no information and answers since not much information was known.
Although common simple tasks can be challenging, I always try so my brain can form new pathways for doing things, like a toddler learning to better their skills as they develop into adulthood.
We do what is needed to make it to the next day. Each day brings a challenge no matter the ailment. I am proud of everyone for trying and keeping a positive attitude. As my husband says, giving 50% effort is only half, and half is failure. In another words, in making any attempt, put 100% effort into it for a better chance of success.
Thank you. You too, enjoy the weekend!

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not sure if this applies — couple of years ago I had what I thought was motion sickness or vertigo — saw my primary care doc and he sent me to a vestibular therapist — the crystals in my one ear had become dislodged from where they were supposed to be in the ear canals, and after about 5 or 6 treatments, it was gone and I have not had it since — I'm not saying this is your situation, but it might be worth checking — fortunately I belong to a large clinic with a large PT department, which had only 2 of these therapists — there is extra training/schooling needed for this type of therapy — good luck

on another note — when you look for a neurologist, by sure to ask for a neurologist that knows about or has treated neuropathy — the person on the phone will say, 'they all do' — NOT TRUE — it took me a long time to find a neurologist that actually knew something about neuropathy — we really do need to be our own advocate and keep asking == and so important to always take someone with you to take notes when you visit any doctor or clinic

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Hi Lois, I may know exactly what you are referring to (or not). My wife had vertigo and she and I used something on her called the "Epley Maneuver" to get the stray crystals back into their correct locations in the inner ear. We did this by referring to a Youtube video. I don't know which one we watched but here is one I found that goes through the same steps essentially:

Anway, it sounds like you might be describing this Epley thing that we did or something similar. It was totally easy and successful when we did it. Regards, Hank

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@jimhd Hi Jim, there are sunglasses that are worn over regular glasses. I had bought a pair for my mother. Would those be an option for you? I don’t currently have a prism in my glasses but I do wear the clip-ons for sunglasses. It can be very costly getting prescription sunglasses with a prism.

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Hi @lois6524 thank you. I appreciate your input. I am glad you found a solution with only a few visits. After a while in dealing with my balance issue and motion sickness, I decided to try vestibular therapy as well. Luckily I found a physical therapist with over 20 years experience in vestibular treatments. We tried the different exercises to move the crystals in my ears. I was so determined to improve that I followed all the instructions including doing additional exercises at home. I gave it a week but saw no improvement at all. Instead I still had the same motion sickness but now I had a terrible headache. Needless to say, i stopped the therapy. A couple days later my headache went away. I am glad I gave it a shot. One less attempt on my list and I know now to move onto another. Thank you for your suggestion. When I look for a neurologist I will ask for one that deals with neuropathy. I may be able to get more info. My neuro surgeon who caused my neuropathy told me it would eventually go away. It is going on 4 years now and I still have it. It hasn’t gotten worse. Maybe slightly improved, hard to tell. Keep on advocating for yourself. I am glad to hear you are looking out for you regarding your health.

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not sure if this applies — couple of years ago I had what I thought was motion sickness or vertigo — saw my primary care doc and he sent me to a vestibular therapist — the crystals in my one ear had become dislodged from where they were supposed to be in the ear canals, and after about 5 or 6 treatments, it was gone and I have not had it since — I'm not saying this is your situation, but it might be worth checking — fortunately I belong to a large clinic with a large PT department, which had only 2 of these therapists — there is extra training/schooling needed for this type of therapy — good luck

on another note — when you look for a neurologist, by sure to ask for a neurologist that knows about or has treated neuropathy — the person on the phone will say, 'they all do' — NOT TRUE — it took me a long time to find a neurologist that actually knew something about neuropathy — we really do need to be our own advocate and keep asking == and so important to always take someone with you to take notes when you visit any doctor or clinic

Jump to this post

Hi Lois, I may know exactly what you are referring to (or not). My wife had vertigo and she and I used something on her called the "Epley Maneuver" to get the stray crystals back into their correct locations in the inner ear. We did this by referring to a Youtube video. I don't know which one we watched but here is one I found that goes through the same steps essentially:

Anway, it sounds like you might be describing this Epley thing that we did or something similar. It was totally easy and successful when we did it. Regards, Hank

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@helennicola finding the cause is half the battle for alleviating the problem but you won’t know unless you try to see what helps. For you, luckily you found a therapist who specialized in vertigo. Many doctors do not know. They write orders to start a therapy but it is the therapists who do the assessments, write down what they will do to help the patients meet their outcomes or goals, and have the doctor sign that document. The document becomes the orders for the therapist to follow because those instructions are approved by the doctor. The therapist can only follow orders approved by the doctor. Many times I have seen doctors approve what ever the therapist writes because they simply do not question what the therapist plans to do for the patient to meet his or her goals. I am glad the doctors allow the therapists to try since they themselves do not know. It’s all about experiences but I believe some doctors leave it up to others to learn from the experiences.
In my case, there are many variables. I do feel a pressure in my ears that maybe contribute to my balance problem. I don’t know but I keep trying different treatments to seek help. Thank you for your experience.

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