Chronic dizziness and vestibular migraines

Hi @kimh33 - Welcome to Mayo Clinic Connect! I'm one of the community moderators here. I'm sorry to hear what you're going through - and I can imagine how difficult it must be to deal those symptoms with every day. Did you express your concerns about the diagnosis and prescription to your doctor?

Hi @kimh33. How are you feeling? You might like to connect with some of the members in the two threads I've listed below. People like @Gavin, @fedge and @overcomer11 all have personal experiences that could be helpful for you to talk about.
https://connect.mayoclinic.org/discussion/chronic-subjective-dizziness-csd/
https://connect.mayoclinic.org/discussion/i-was-recently-released-from-the-hospital-for-episodes-all-testing-came/

Hi Kim,

So sorry to hear of your problems with dizziness. This May will mark four years for me. In my case it's definitely vestibular migraine. But, I think about the migraines and vestibular dysfunction as two separate issues most of the time as they so often don't seem related. And, while I have always had issues with headaches, I never suffered from any type of dizziness prior to May 2012. The neurologist I see now (who is incredible) had me accept that the initial cause is something we'll never know. I've seen a myriad of doctors and specialists and tried well over a dozen medications (at some point you just stop counting).

At this point I'd say my life is pretty good. There are good days and bad days, and it's difficult for others to understated that when I say I always have a headache and I'm always dizzy, that I mean ALWAYS! I have young children that are very understanding and supportive. I do as much as I can with them, but they understand that there are certain things I just can't do (rollerskating, skiing, bike riding - although I'm determined to conquer that one this summer).

Since headaches don't seem to be an issue for you, I'll try to limit my comments to dizziness. But, let me first start off with medications. All the medications are for migraine, which, once under control, should help with the dizziness (I'm a little dubious in accepting this as my headaches are significantly better now and the dizziness is still an issue). Botox every three months, antidepressants daily, OTC allergy medicine daily, prescription nasal spray for allergies daily, and allergy shots (I have allergies LOL).

Now, two specific things that have helped with my dizziness:

First - physical therapy!!! My goodness, I can't tell you how much my life improved after working with a good PT that specializes in balance issues. The initial balance testing showed that my vestibular system was only working at 10% when it came to balance. After a few months of therapy it was up to 50% and I was feeling SO much better. It's still a daily struggle, but no where near as difficult as it used to be.

Second - food. Once I started keeping track of how I felt after eating certain foods it became clear that what I was eating was a major cause of the dizziness. And it's an ongoing process . Once I determined the major triggers I've found that it's much harder to find lessor triggers (just discovered a new one last week). Here is my (ever growing) list of triggers: pork, citrus, caffeine, aspartame, chocolate, nitrates (so processed meats of any kind), nuts, bananas, vinegar (no condiments), dairy (processed cheeses are ok, think Kraft singles), red wine, brown liquor, anything with active yeasts (fresh baked goods, beer. I can have regular old Wonder bread), gluten, and tomatoes. Also, based on somethings I read at vestibular.org, I'm going to start monitoring my salt intake and overall hydration levels. That's a lot of stuff I try to avoid. I cheat from time-to-time depending on how I feel. I have a very small reaction to gluten (that's the one I discovered last week) so i don't stress too much if I have some. But things like pork, citrus, and dairy are instant killers. There are things I really miss but found that I can live without them if it means I'm not so dizzy.

I hope some of this might help you. Good luck! I hope you have some relief soon!

Jeff

I have been dizzy after my surgery on 2000 what I do is use a walker and that way you feel secure . I use it all day even at home

Kim,
Vestibular migraines are real and there are medications that help! I have had them since January of 2011. I take Topimax. I began on lower doses and increased as I needed with close supervision of my neurologist. Ask about this medication! You don't have to live feeling tipsy while you're stone cold sober.

I say try that for a while. If that alone doesn't help look up something called Chronic Subjective Dizziness. It's real and it can be combined with vestibular migraines and it isn't something too many general ENT docs know about. MAYO Clinic would be the best bet for that diagnosis. BUT REMEMBER ASK ABOUT TOMPIMAX first.

I am living proof that there is always and answer and always a way. HANG IN THERE!

Overcomer-Megan

Hi Megan - I appreciate it was a while ago that you posted your message, but if you do see this I had a couple of questions. Before you started on Topamax did you have constant imbalance every day? Or just occasionally? If it was a daily thing did the Topamax stop all of the imbalance? And finally as this was a couple of years ago, do you still get issues now?
Many thanks for any answers you could give.

I had imbalance everyday prior to using medication. I still have imbalance off of medication as well. However the medication is used to help manage part of the reason I have the imbalance. It is a preventative for my vestibular migraines. When it is combined with an SSRI to treat my anxiety and depression it helps reduce the number of days/time I feel dizzy. I am best when I also control my stress levels and exercise as well.

Medication is not a "cure" for my imbalance. It helps me manage it from day to day. I am disabled legally as it keeps me from being a reliable person in the workforce.

If you have more questions feel free to ask.

Kim
I to have what you have,its going on eight years now and its called chronic subjective dizziness (CSD). I just was put on Sertralene from my Neuro Dr., we will see if that helps.
You need to do something to get some relief and quality of life back, try sertralene and see if you get releif. Find yourself a good Dr who deals with CSD.
I feel your pain. I'm always open to feed back. Good luck.

Kim: am so sorry to hear of your problems. I also have been dealing with constant dizziness, but the only solution I have been given is to participate in PT to realign my ears and my eyes. I have a schwannoma, but the neurosurgeon says this is not the cause of the dizziness. I also feel normal only when I am sitting or lying down. I have lost night vision completely, so cannot go out after dark. Know that many people are thinking of you.

Hi:
I can relate with you. I have been having dizziness since 2013 and I had every test that you can imagine. I do have fluid in both of my Mastoids and I was told that was not the cause. I did have 3 Station Tubes in my Right Ear all had failed then I had a Balloon inserted in the right ear and I am still being told that my ear is not the problem. I just got back from the Mayo Clinic with no answers. Will be going back next month for more testing. I also staggered when I walk. I do not fall but I have to balance myself from falling. Do you stagger when you walk? So far all blood work is perfect I wish my walking was. Don’t give up and don’t quit your job
I can still work out but I noticed that is one of my triggers. I had every heart test done you name it I had it done. I wish someone can figure this out because I am loosing my freken mind. Hope you the best, and if I get an answer I will let you know