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Where to Start?

So many years, so little understanding . . . here’s the abbreviated version:

My first medical appointment was about 15 years ago with complaints of hearing loss, tinnitus, ear fullness, etc. Referred by my primary care doc to an ENT who, after a brain MRI, told me there was nothing wrong with me. Attempts to change his mind were fruitless so I left and never returned. A subsequent breast cancer diagnosis forced my attention elsewhere for the next several years.

My symptoms continued to worsen, including poor balance, trouble walking a straight line and increasing tinnitus. I also experienced significant cognitive challenges, which I assumed was the result of cancer treatment. Consulted ENT #2 who diagnosed endolymphatic hydrops. Suggested a low sodium diet and prescribed diuretics, which didn’t help. Told me I’d probably get worse over time, had no solutions but at least tried to help. Then he left his practice and moved across the country.

I ignored my worsening symptoms as much as possible for a few more years. Finally decided I needed more help and went to ENT #3. I’d been feeling awful, experienced several scary falls, dizzy, unstable and generally miserable. Was once again prescribed diuretics, which did nothing. This doc was worse than worthless but since I didn’t know what was wrong with me I had nowhere to turn.

While traveling alone on an overseas flight, I stood up to exit the airplane and suffered a massive vertigo attack, collapsed in customs and was hauled off to a medical clinic where I was injected with drugs. Lots of drama ensued. From that day on I started experiencing vertigo attacks, some massive, up to five times a week. Incompetent ENT #3 offered no help whatsoever. In desperation I consulted the acupuncturist who had helped me through cancer and she referred me to a local neurotologist. He saved me.

After lots of tests and no definitive diagnosis, we agreed to start treatment for vestibular migraine. Before treatment got underway, I was found unconscious – apparently suffered a hemiplegic migraine, possible seizure. Treated in the ER for a concussion and busted shoulder. Pushed ahead with treatment plan starting with topamax, plus clonazepam for acute episodes. Added VRT once I was able to tolerate it. Slowly improved over many months, but had a second hemiplegic migraine during surgery for injured shoulder. After 18 months, titrated off topamax without problem. Doc referred me for vision therapy before he left his practice and moved across the country.

It’s been four years since he left and I’ve been relatively stable – not great but not collapsing in public places either. Earlier this year my symptoms began to increase, which is terrifying. I’m now on a mission to find a new medical provider. So far I’ve been turned away by an ENT, a neurotologist and a neurologist who specializes in headaches. I think my history scares them. I have an appointment with another headache specialist (neurologist) in a couple of months – not sure what I’ll do if he blows me off too. I’m not looking for a cure, just a partner to guide and advise me. Fingers crossed.

There’s lots more history but too much to include here. I don’t want to discourage anyone – I really am so much better than when my symptoms were out of control. Just wanted to share my health profile as many of you so bravely have. Thanks for listening.

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Wow you really have been through the mill! (Then again, you are in good company on that front, sadly!). Welcome to the forum. You’ll find plenty of friendly support here!!

Sfnative,

You are a tough person. That’s a hell of a back story. And you remain positive. Wow. You’ve got warrior status in my mind.

Welcome. I’m sorry we didn’t respond more quickly. I know I read your post last night but couldn’t find words to address you. (Also I had a ripping migraine.) Perhaps our collective silence is because you lived thru some of our worst nightmares. But you survived and came out fighting. So maybe we’re silent because we’re so impressed and don’t feel like we have much to offer to someone who’s seen the worst of it. We do, of course, have much to offer by way of love, support and understanding.

I’m not going to suggest my experience has been so harrowing. I understand part of it. My first wake up to worried faces came in the late 1990s. Brainstem aura can drop you and did repeatedly for a few years though I was always lucky to be at home at the time. Probably it’s my fault my husband’s hair went grey young. My worst experience to date was a grand mal in 2006. (That would have been a good day to have been wearing pajamas to bed. Why it caused me to completely and permanently forget the prior two months but seared the memory of coming to naked surrounded by paramedics into my head is just a cruelty of neurology I guess.)

I too have done the rounds. Medical science and it’s practitioners have a long way to go to catch up to our needs. I’m trying out my fourth neurologist this week. If you are in San Francisco, you’re in good company with respect to other MAVericks. @GetBetter Vignesh and @napagirl, I’m calling on you again to provide local health care provider recommendations. Probably the best VM doctor in the US is Timothy Hain. Vigs has been to see him.

Welcome to the family.

Emily

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Thanks to both of you for the kind comments. My experience certainly has been a huge challenge, as I know all of you here can relate. For my mental health, I try to make VM as small a part of my life as I possibly can. My priority now is to establish a relationship with an interested, competent practitioner. I need someone I can turn to if my condition worsens. I’d also like to know if my current condition is as good as it will get, or if there are more options to try. Right now I feel like I’m flying without a net. My primary care doc is a wonderful guy but this is way above his pay grade.

I’m considering ways to prepare for my upcoming appointment with a new (to me) neurologist and am open to suggestions. I have a copy of my records from my Savior Doc which I will deliver a week or so before my appointment. I’m wondering if I should also create a timeline of my journey? A list of current symptoms and triggers? Something else? Do they even read these things? Or should I wait until I meet him and see how he wants to proceed? If you have any advice, I’d love to hear it.

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I’d come armed with info. All of the things you mentioned plus print outs of Dr. Hain’s VM pages and the info from VEDA. I’m going into my new neurologist with a month of symptoms and trigger tracking. I know that feeling of flying without a net. My MD GP is nice but never heard of VM. My former neurologist is lovely but was told by the clinic head to drop me because I didn’t fit the typical migraine headache profile. I’ll go back to her if the new neurologist-endocrinologist proves clueless. The current one is teachable. She’ll let me med trial whatever I ask for, provided I supply the research. In my experience the good ones will work with you and read the information you give them. If you don’t get a committed partner out of your neurologist, keep shopping.

Let me reiterate your total badassery. You have a great attitude.

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@sfnative wow!!! I don’t even have words but I’m glad you joined the group …I’m sure you have plenty of experience & advice to offer for a lot of us, in return you won’t feel alone in this, there’s amazing people here always offering support

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Thank you so much, flutters. Your advice helps tremendously.

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Together we’re strong. Incredibly wobbly a lot of the time, but strong. It reminds me of hurricanes, timely at the moment. When I lived in Florida, a hurricane would come in and knock over the great big live oaks because they were rigid. The flexible palm trees would bend all the way over to the ground, but they would snap back. The grasses never noticed. We’re like the grasses. The wind blows through our meadow but our strength and our resilience come from our flexibility, so we survive together. @sfnative, we’re happy to have you here.

That said, @Manatee and @Diana21, my Florida friends, you are in my prayers. My entire extended Florida kin took this one seriously and fled north or west. Y’all should be fine on the Gulf side, but I’m praying for you anyway for safe measure. I’m seriously hoping my Melbourne based MIL doesn’t lose her trailer.

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@flutters thank you love. This is one is definitely nerve wrecking, too strong and too slow, we won’t know if it is going to pull a Irma on us & head this way until about Tuesday morning …praying it doesn’t but tonight my heart feels so heavy for the people from The Bahamas, I’m too scared to watch the news tomorrow.

That said I’m already half way done with my hurricane snacks, too much for trying to stay low carb :confounded: I eat when I’m nervous lol

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That would make a very appropriate title for my book too.

We have broadly similar histories. Although I don’t experience hemiplegic or basilar migraines my attacks were always severe and protracted with an eight day norm during which I’d be bed bound, unable to stand, in fact virtually unable to move, often unable to open my eyes or lift my heavy head from the pillow, and all this went undiagnosed and unmedicated for many years. I can fully appreciate how the consultant’s reach for their running shoes upon approach. That’s happened to me. Prior to developing any illness myself I’d always assumed heavy duty, complex, complicated (I’ve been called all those) cases would fire medics imagination and receive more attention if only with an idea they might gain some knowledge from a closer look. However in practice the exact opposite appears to be the case. I’ve long since reached the conclusion they don’t want to get a black mark amongst their Success Statistics! “Sorry your condition lies outside my field of interest” was one comment. Still we all plod on with stoicism and you certainly seem to have plenty of that together with an admirable attitude. Thanks for thanking us and thank you too for throwing your lot in with us. I’m sure it will prove a mutually beneficial association. Just the one question if I may. Why did you quit the Topamax? Helen

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Amen to “this is outside my practice” comments from practitioners. One guy honestly told me that docs want to treat patients that they know how to help, and are reluctant to take those with intractable conditions. Good for them, bad for us.

My Savior Doc (SD) always viewed topamax as a temporary med to get my out-of-control symptoms back under control. The side effects from the drug were unpleasant but since it was working I was willing to deal with it. The original plan was use topamax for six months but it took 18 months for me to stabilize sufficiently to titrate off. Unfortunately, SD closed his practice just at the point where I was ready to move from acute to stable, so was not able to pursue other, easier meds for the long term. Maybe that’s the next logical step but I need a doc to help me figure that out.

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Thanks for clarifying. Interesting. Takes some powerful drug such a condition. Very unfortunate timing with your doctor’s move. So much easier if only you have somebody to manage your case. I would have liked one too. Good luck with your search. Helen

Have they ever mentioned meneires disease? VM and MD have the same symptoms except with meneires you have ringing of the ears. Your drop episodes are very common with MD. My mother suffers from MD and I am starting to show symptoms. Unfortunately for me, I think I have both MD and VM. I hope you find some answers soon.

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Yes, it’s been mentioned, but I know many docs believe Meneires is just a variation of VM. That was my good doc’s speculation, anyway, and I’ve heard that idea repeated by others. Many overlapping symptoms.

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Welcome I must say first off-
I was diagnosed with VM just about 4 mths ago
I had seen my primary care physician who thought it was only vertigo caused by movement however it was so severe an the horrible vertigo last all day an night for 4 months till I felt I could not take it any longer, had tried chiropractic work and acupuncture to no avail…saw a ENT in Sacramento Ca who said it was a migraine, of course I did not believe him, then was referred to a neurologist in a Palo Alto, Va at Stanford medical…that’s were I was saved, quite litterly…VM was diagnosed, clean MRI an CT scans, but very ill still…lost 40 lbs from my constant nausea from the severe dizziness an delirium, could not ever sleep or nap from all the crazy scale an head sensitivity going on, ice packs were a constant to lay my head upon( still do to this day to sleep or nap)…I was started on nortripalyne 10mg after 4 months I’m up to 35 mg an am at a great mg for my symptoms
At week 4 of starting this medication my dizziness went away, I started to “ live” again, I had so much vestibular over sensitivity I could not go in a grocery store, could not look at a person as we spoke an could not balance myself…
My neurologist suggested I start vestibular therapy
Between that (9 sessions an then I graduated with flying colors) an the nortripalyne, I’m feeling almost 100% myself…
Still have neck tightness an should tension but not nearly as severe as it was…
Not dizzy at all only a tad lightheaded, I can live with that believe me… as I’m sure you well understand
I know this is the “new” me, ugh sorry to say, but life throws things our way an we have to learn to play ball…lol
I hope some of what my story was can or will help you…
And again, welcome to the “family”…
Michelle-

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Maybe, but maybe not. This thread links to a study that demonstrates there is a measurable difference between control groups, MD and VM in the types of pro-inflammatory cytokines in the blood.

https://www.mvertigo.org/t/mav-an-autoimmune-condition/18292

Nice to meet you, Michelle2. It’s reassuring to hear about successful treatments. I’m not currently taking any meds but suspect it’s the next step if I can find a doc to agree to treat me. It’s true that after suffering with miserable, out-of-control symptoms, some of the other less life-altering symptoms seem tame. Then again, maybe it’s foolish to settle for “not falling down” as a measure of stability.

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Flutter, I’ve read some of the debates, but honestly at this point I don’t care what the label is. It will all have to be sorted out in the future by people much smarter than me. I just want to live a full life NOW. As far as I can tell that means medical trial and error, and I don’t see that changing soon. I hope I’m wrong.

Sorry, trial and error is pretty much the only strategy.

I too think you show strong symptoms of Ménière’s disease mostly due to the hearing loss. I have both Ménière’s disease in both ears and vestibular migraines and they are distinctly two different diseases! My nuerootologist is from Germany and is at Kansas University hospital. The Mayo recommended him!! Germany has been making more headway in the field of Ménière’s than any other country. He was able to diagnose my vestibular migraines on my first visit ,which my dr in Oklahoma had been confusing as part of the Ménière’s symptoms for 18 years!! I had become home bound and lost my part time job due to them! I now have my life back working with a neurologist who treats the migraines with topomax, and Botox plus I have found the elimination diet on the migraine buddy app invaluable!! It is much more thorough than most diets! I’m surprised the Ménière’s disease has been ignored in your case. It may be worth pursuing. Is your hearing loss in the mid range? This is the classic hearing loss pattern.

Good luck in your pursuit!! We must keep advocating for ourselves and as mentioned before bend not break!!:slightly_smiling_face:

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