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My vestibular migraine map. 8 years and many medications. And a reminder to keep trying!

#1

First acute balance issues : Sept 15, 2010 from a VNG
Number & duration of acute phase(s) : 2, both lasting several months
Any suspicious physical event/trauma leading up to dizziness : VNG for first event, chiropractor adjustment for second event
Start of chronic phase : Sept 15, 2010
Age at chronic onset : 32
Started medication : Jan 2011
Stopped medication : Dec 2019
Number & type of consultants seen to date: 5 neuro, 4 ENTs, 1 osteopath, 1 chiro, 1 chiro neurologist
Diagnoses received (one I’m “running with” first): vestibular migraine
Medications used successfully for MAV: Just tried first round on Botox. I think it’s helping but won’t know for sure until my second round. But so far no meds have been successful except Compazine taken when needed for motion sickness. Other meds, even if they helped a little bit, had side effects that outweighed the benefits. Amitriptyline and venlafaxine helped the most.
Failed medications for MAV: occipital nerve block, keppra, duoloxetine, memantine, Celexa, amlodipine, propranolol, zolmtriptan, nortriptyline
Non-pharmalogical treatment tried which helped :
Non-pharmalogical treatment tried which didn’t seem to help : magnesium
Dietary triggers identified : dark chocolate, too much caffeine, chick peas
Any hearing loss in either ear : none
Persistent or intermittent tinnitus and character : a persistent high pitched tone in both ears, for as long as I can remember. No ear damage caused it.
Other chronic conditions I’m suffering from : none
Medication I’m taking for other conditions : none
Any personal history of migraines : no
Any family history of migraines : no
Any history of ear problems : tinnitus
How did friends, family, and doctors react to your symptoms? : Very supportive.

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#2

I’ve had MAV for 8 years, have seen many medical professionals and tried many things (see above), and just last week found out I have a superior semi circular canal dehiscence (SSCD). I don’t know yet if it is the cause of my dizziness (maybe I will only know from surgery), and treatment is to just continue the vestibular rehab I’ve been doing, but this is the first time anyone has found a possible physiological cause for my condition. And I only came to it because I finally found a medical professional who I felt actually listened to me when I described my symptoms. So I’d like to encourage everyone out there to keep trying! Keep asking questions, keep listening to your body and its needs, and keep looking for the professionals out there who you feel take your concerns seriously. It turns out that two years ago, I saw an ENT (the fourth one I’ve seen) who I felt dismissed my symptoms and recommended meditation (which I already did do and still find helpful), but did nothing else. Turns out he lists SSCD as one of his specialties on his webpage! So many times I feel like my invisible condition is dismissed, even in seemingly empathetic envionments, especially when my symptoms first started. It’s been a long MAV journey and I know it will continue for much longer, and I’ve wanted to give up the fight so many times. So this is just a reminder to keep going. XOXO

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#3

Really pleased for you in that you have a definite diagnosis at last which just shows persistence does pay. As Einstein said you have not failed until you stop trying!

As you had been diagnosed with ‘vestibular migraine’. Can we assume you do/have suffered migraine as I note you don’t record any family history of migraine in your summary.

One question, if I may, could you explain what tests you had to undergo to reach your SSCD diagnosis, and what level of clinical expertise was necessary. I ask because I understand SSCD to be very rare in occurrence so presumably not well known and easily recognised. Helen

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#4

Thanks for following the structure. I’ve made your first post a ‘Wiki’ so your ability to edit it (if you have any further updates) doesn’t time out.

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#5

Thanks Onandon03!

Yes I do suffer from migraine (got one right now, in fact!), although I have no family history of it.

For SSCD, I’ve only had the CT scan and have yet to get the VEMP test which I think can determine if my dizziness is indeed caused by the SSCD. How I got the SSCD diagnosis: I see a chiropractic neurologist for vestibular rehab (other vestibular rehab I’ve tried in the past was too hard for me, and she customises or simplifies them for my needs). I told her I sometimes hear a rattling sound when I walk (by the way my neurologist had no explanation for this and I felt dismissed), and she immediately thought it could be SSCD and helped get the CT scan approved by my health insurance (I live in the U.S. by the way).

She (the chiropractic neurologist) said that SSCD is probably less rare then it actually is because not many people know about it or get their patients tested for it. She’s seen a number of patients at the chiropractic clinic get diagnosed with SSCD. Hope this helps!

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#6

Great. Thx. Just thought it would be good to clarify in case you scamper iff into the sunset. That way makes it more sense in your thread so it might help somebody else in the future. I saw a TV Prog about SSCD back along and the young lady had to travel to US from UK to get true diagnosis and treatment (major operation). I wouldn’t have imagined anybody but a specialist would pick it up. Your chiropractic neurologist is right. Helen

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#7

It is great you are edging closer to a cure.

That’s quite a major operation though and both that diagnosis and the procedure is quite new. It might therefore not harm you to get a thorough second opinion from an equally qualified ENT/oto-neuro surgeon before going any further.

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#8

oh yes, i am definitely getting second professional opinions, and reading into the scientific review articles on the surgery and the subject. :slight_smile:

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#9

If you pick up the Menieres article link @turnitaround posted today you’ll find alot of info on SSCD you may not previously seen. As James says the website design isn’t good. I’ve been unable to post you a direct link to the SSCD article but it’s there! Helen

#10

found the link. thanks so much, Helen!

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#11

update: i’ve been on part-time disability for several months now, and can’t really afford to stay on much longer. but my symptoms haven’t improved (just my ability to cope with and prevent them somewhat), and my 2nd round of botox isn’t until the end of May. so i’ve gone back on amitriptyline, at least for now so i can return to work full-time. i don’t like the side effects from it (drowsiness, weight gain), but it’s the one drug that’s been helpful that i can tolerate the best. will update my map/first post soon.

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