Know that sort of feeling. It comes back to That Million Dollar question āIs this as good as it getsā and whoās know the answer to that one. Itās a subject I keep revisiting too as I watch huge aspects of my former life slip by. Helen
Seconded. With the apparent apathy in research into vestibular conditions Thereās no way Iāll ever live long enough to benefit. Thatās not depression talking, just common sense. I admire your approach. Helen
My new neurol-endocrinologist was a breath of fresh air this week. I brought my graphic (from my diary) and a very detailed symptom log. Based on the office questionnaire she thought maybe I was there for thyroid. I said yeah that too but no. Will you listen to me for a few minutes? She did. I gave her a highlights tour of the last 25 years or so. She said that I was as knowledgeable as she was about my own condition because weāre both stuck on the edge of where science understands. She was very pragmatic, made zero promises, ordered way too much bloodwork to check a variety of hormones and said weāll just have to work together to find meds that help without reducing my quality of life. She doesnāt pretend to have solutions, just strategies and a willing attitude.
Flutters - That sounds like my kind of doc, exactly who Iām looking for ā a partner in health, who sees me and is willing to work with me. Iām a big girl, I can handle ambiguity and disappointment. The āI canāt fix you so I wonāt treat youā attitude is infuriating. Good luck with this new physician.
The false promises alternative docs are just as infuriating. Iāve had both sorts.
I did that once (graphs and everything) and the consultant accused me of ābeing a little obsessedā with my symptoms!! (Well you would be mate!!)
Mine asked if I was always top of my class.
Thatās something in itself, Well itās always easier to get on with somebody who has a sense of humour.
I was impressed by the perspective of the neurologist I just saw at a pain management/chronic pain clinic. Unlike many other doctors I have seen, he understood and advocated a very multi-faceted approach (have you tried acupuncture? hypnosis? CBD oil? a long list of various medications? meditation? how did these supplements work for you? is the vision therapy helping or making things worse?).
With long-term chronic conditions, this seems helpful: the downside is that it takes energy to try a bunch of things at once, but if some of them might work, who cares. With most doctors, wonderful as they are, if you arenāt actively dying, they really arenāt that concerned about you or your quality of life. So you can end up just trying one med after the next and it can be slow and frustrating. At the chronic pain clinic, the neurologist was very proactive and understood when I explained how my life has been affected by these conditions.
Thatās great! Where Iād this neurologist?
Sounds like you found a gem. How fortunate!
Well, not sure about that yet, butāmy intended point was that chronic pain and pain management specialists strike me as a good option for sufferers (survivors?) of VM and related conditions. It seems like a good fit. I was referred to the specialist by my GP.
This is in Toronto, at the pain centre that is part of the one of the major hospitals.
AN UPDATE: After waiting for many months, today I finally had an appointment with a neurologist who runs a headache clinic in a large hospital. In advance of the meeting I dropped off the medical records from my prior physician and all of the requested paperwork.
The appointment was so disappointing. He said he didnāt think I have migraine, that I didnāt fit the standard profile, and stated that VM is a discredited diagnosis. He thought the two episodes my prior doc assumed were hemiplegic migraines were probably āsomething else ā maybe a stroke.ā He said he thought I had āsome sort of vestibular issueā and suggested I see an ENT. When I reminded him Iād already seen four ENTās without any help, he shrugged. He then suggested I see a neurotologist. I reminded him Iād been referred to him by a neurotologist who refused to treat me. Then he suggested I consult with the physician who treated me successfully several years ago, knowing that his practice is located 3000 miles away. In the end he prescribed a low dose of zonisamide (an anti-seizure med). Itās apparently similar to topamax which I took when I was very ill, but had a difficult time tolerating. Told me to return in four months.
Sigh. If Iāve had two strokes wouldnāt that warrant some medical attention? I told him I really didnāt care what label he put on my disorder, I was just looking for someone to work with me. I think the only reason he didnāt dismiss me outright was because Iāve been dismissed by so many other practitioners who donāt want to deal with an ambiguous health condition and it would have been too embarrassing. I felt like crying when I left but instead I came home and took the dog for a very long walk.
Not sure where to go from here but Iāll figure it out. Thanks for letting me vent. Grrrrrrr.
Many of us have had similar experiences. My first neurologist (older gentleman) didnāt even mention VM/MAV, just thought it was vestibular and told me to go back to the ENT. My advice is to screen your next neurologist based on age. My second neurologist just finished his residency and was better equipped to identify non-standard migraines. In my case, I have significant head/nasal pressure, so he treated me based on that, even though I told him repeatedly that I didnāt have much pain.
So I guess what Iām saying is donāt stop looking for the right neurologist. Mine isnāt perfect, heās not really a MAV expert or anything, but he listens pretty well and respects my decisions regarding medications and treatments. And thatās really all you need I think because we know the treatment options very well from reading posts on this forum.
Good luck!
Erik
I agree. The younger the better. Iāve been patient dumped by a headache clinic because I didnāt fit the profile. VM is poorly understood even with the folks who are supposed to know. Itās exceptionally frustrating. They just have no idea what VM is like to live with.
Iām currently deciding whether to try to go back to the only one whoād see me at the first (prestigious) headache clinic - a neurological nurse or to try for neurologist #5 at a different (also prestigious) headache clinic. Itās beyond infuriating to wait so long and then be so thoroughly disappointed and mis-treated by the people who are supposed to be the rare few who understand us.
Iām completely unmedicated right now and have found that to be not quite unpleasant enough to re-enter the medical roulette and seek new meds.
A hopeful update . . . Yesterday I had an appointment with a new neurologist in a local headache clinic. It took nine months to get an appointment (!) but it finally happened. A couple of days before the appointment I dropped off my relevant medical records, plus a chronological history of my health situation and a list of symptoms, triggers, meds tried, etc.
She actually reviewed the material in advance! She spent well over an hour with me, asked many questions, listened intently, treated me like an intelligent and rational adult. She confirmed the diagnosis of vestibular migraine (chronic) and suggested I should be on preventative meds ā said I should have been under the care of a neurologist years ago. Everything she talked about was in sync with the research Iāve done (Dr. Hain, et al.) and the information Iāve found here. She was reassuring that I can be better than I am today and laid out a course of treatment we will follow (weāll try this, if that doesnāt work weāll try this, etc.) Given my prior experience with possible hemiplegic migraine episodes/seizures, she ordered an MRI and EEG, plus blood work but was reassuring that thereās a good chance I wonāt have a reoccurrence. Very thorough. I told her my objectives were to have a relationship with someone who can help me minimize my symptoms, and is available to help me if/when my condition worsens. She nodded like it was the most reasonable request in the world.
I walked out of the office with two prescriptions, a follow-up appointment in a couple of months and orders for blood work, MRI, etc. She encouraged me to call her if I have any issues with the drugs. Her assistant got me connected with her online portal so we can communicate more easily. Finally, Iām feeling good about my medical care.
Maybe all of this sounds like something any competent doc would do but that hasnāt been my experience. Iāve been undiagnosed, misdiagnosed and dismissed so many times Iāve nearly given up hope. I guess my message is twofold: donāt give up and be prepared to advocate for yourself. Iām glad I persevered because I think I finally found a good one. Fingers crossed!
YES!!!
This is great.
Another update . . . First the good news. Iām so glad I established a relationship with the neurologist I described in my last post. Sheās great. The bad news ā my vestibular symptoms suddenly blew up with out-of-control vertigo, unable to stand, nausea, vomiting, headache, lasting 3 - 10 hours per episode nearly daily followed by non-stop dizziness and instability. After eight years of leading a relatively normal life, suddenly my brain once again went haywire overnight. I always knew it could happen but hoped it never would. But it did.
Luckily my lovely neurologist jumped right in and loaded me up with a bunch of rescue drugs, which mostly didnāt work, then put me back on topiramate, which worked for me ten years ago and is working for me again. I just have to deal with the side effects which include congnitive challenges.
Interestingly, Iāve had a significant hearing loss in one ear, which is apparently a direct result of the migraine. Iām consulting with a neurotologist to try to save as much of my hearing as possible. My vision has also been impacted ā Iāve had to have stronger prisms in my lenses to keep me from seeing double.
I donāt want to discourage or scare anyone ā my case is pretty extreme. But I guess my message is to keep pushing until you find a competent health care provider so when/if things start to go south you have someone who will know what to do. Iām so glad I found her.
I myself have lately been on a trip to the Deep South of MAV. Six weeks off work thus far. Sigh.
So sorry, flutters. It really, really stinks.