I am quite new to this forum. I myself is a Dr, working as GP. Unfortunately suffering from dizziness since 5 months. Have a strong hx of Migraine since childhood. Initially diagnosed as BBPV by Neurologist, and later as Meniere s disease by ENT. I personally did some reading and came to conclusion unlikely to be Meniere s disease. Did a MRI-normal. Caloric test: b/l decrease response. No vertigo but chronic dizziness. It started off after a Migraine attack in May this year. Initially tried Betaserc and GInko for few days. Than Neuro suggested Flunarazine and Dimenhydrinate. Took it for nearly 3-4 months, was getting better. Still had occ dizziness, able to work and see patients in the clinic.
Did all the dietary changes, lost about 3-4 kgs because of stress of dizziness. Again had a Migraine attack, and currently on Amitriptyline 10 mg and Flunarazine 5 mg for last 3 weeks. I am planning to increase to Amitriptyline 20 mg next month.
Did any one feel any worsening of drowsiness after increasing Amitriptyline to 20 mg ?
Hey Evelyn, gosh a Dr. on the forum, welcome but at the same time sorry you are here!
Yes, you will see an increase in drowsiness … this wears off a little but never completely goes away … best to take it earlier in the evening if need be to decrease lethargy in the morning (I think I settled on 9pm). 20mg remains a pretty low dose though, as you know. I took 20mg for a while but recently quit the drug as was doing better. However, I’m not fully recovered and am considering returning to the drug. Depressed patients used to take 150mg of the drug in days gone by! My psychotherapist told me I was taking a ‘homeopathic’ dose, lol!
I found on 20mg I was able to work and get on with life. After many months at 20mg I found the worst side effect was the minor constipation, everything else was tolerable. Even the dry mouth disappeared.
Thanks for the reply. I am a person who hardly takes medicine, so even 10mg of Amitryptilne made me feeling sleepy for few days. I am self treating it now and trying to adjust meds.
Also planning to try acupunture this week, hope it helps…
As a GP, i myself felt a bit down unable to find my right meds. Hope all of us get well soon…
Yes, as long as you can get prescribed going to a specialist may not be necessary as you get to know the ropes after a while and there is plenty of info online.
Dr. Hain’s page on MAV is very useful to give guidance on the broad range of drugs available. See the chart at the bottom of the page:
I found his drugs page useful too:
Someone recently reported they got to 100% using this same combo of drugs. Mixing meds from different families is proven to be effective. Amitriptyline is a TCA and Flunarazine is a calcium channel blocker.
Also the ENT who said Meniere’s did he bother explaining if it is SEH(Secondary endolymphatic hydrops) versus Primary(classic Meniere’s)
Also do you see salt acting as a trigger ?
Dr. Evelyn wish you the best of the luck in getting better soon.
Hi, I’m a dentist haven’t worked in a year. I think I have basilar migraines or some kind of vertigo migraine. I’ve tried herbal pycogenol, vitamins, ginkgo, b vitamins, magnesium, anti seizure, tricyclics, sleeping pills, Valium, nsaids, Tylenol, and much more. I’m in my 40s I’m thinking of going to another neurologist best to get 2 opinions.
Something will work for you. I’m married to a gp so I’ve gotten the full work up! That causing anxiety I manage to find hope in God.
I felt led to throw it as a lifeline. I used to believe in evolution and my good out weighing my bad. But one day I got rescued from myself admitted I needed a savior. Jesus came to save the lost sheep. Anyway, I wish someone told me about this earlier before I landed with humongous debt from school.
You have access to patients that say what works ask them. Now you can empathize with them.
Initial days of dizziness i felt like a heaviness in the head, there was no fluctuating hearing loss or episodic heaviness in the ear, but he still felt its Meniere s disease. He started me on diuretics, but my BP is usually on the lower side, so i felt more dizzy with that. I started restricting salt from then, but still didnt feel much of a difference. Took second opinion from another ENT, he told can be variant of Meniere s disease.
I am 34 yrs old, and i have no family hx of any ear issues. But have a strong hx of Classic Migraine with aura since my childhood, occurs about once in 6 months, episodes has been increasing recently.
I also felt my L side frontal region pulsating with headache on and off, then realised it might be MAV. To be frank i was not aware of something like this before.
My Neurologist suggested Venlafaxine initially, but i didnt have the courage to take it after reading thru the side effects. Then he started Flunarazine.
As i got another migraine with Flunarazine, i decided to start Amitriptyline.
I had taken Gingko 120 BD and Betaserc 24 mg BD everyday for about 4 months. Currently I am no longer taking Beta serc as i feel its not helping, wanted to try compensating vestibular system.
I dont feel very anxious now, compared to 5 months back as i accepted it.
I also have B/L tinnitus since the start of Dizziness, which is 24/7, but getting used to it.
@evelyn It’s a comfort to know (and also makes me feel like I’m not alone) that you, as an doctor of medicine, were uncomfortable starting Effexor due to possible side effects. I have tried so many medications due to this condition (I’ve had it for 6.5 years now, housebound for almost the last 2 years) and have had many side effects and have become increasingly sensitive to them. I now have a fairly extreme fear of starting new medications. I have seen therapists and no one can seem to help me overcome it. I have also always had an extra bad gut feeling about Effexor, even my doctor shied away from it as a choice for me.
Sounds like Secondary endolymphatic hydrops to me. What is B/L tinnitus ? Did you attempt any VNG or VEMP testing.
Flunarazine is not available in the US. I assume you are in Europe.
Effexor XR(Venlafaxine extended release) is something that Dr.Hain (MAV doc in the US) uses a lot. I have an unopened bottle of Effexor XR prescribed by my neuro-oto. Scared of the “Brain-zaps” people experience once they have to wean off it. I am currently on 20mg Amitriptyline and want to continue that and see how things progress.
I also do a daily supplement cocktail - Magnesium, CoQ10, Vitamin B2.
I assume that to be bi-lateral tinnitus.
Evelyn is it as bad in both ears? I injured one ear and get worst tinnitus in that ear (btw tinnitus emerged 6 months after injury!). I get a much smaller amount and different type of tinnitus occasionally in my ‘good’ ear.
Yes, tinnitus in both ears. Not that loud, it becomes more aware when there is silence around.
Tinnitus started 1 month after dizziness started. Initially felt eyesight a bit blurred(i think that was the migraine aura persisting), that resolved after few days.
Tinnitus worsens with KFC and some junk foods. Anyways i haven t touched coffee for 5 months. Also stopped eating food from outside, only home cooked food.
Do you guys Dx with MAV have a feeling of rocking sensation all the time ?
Somedays worse. I feel by Heart rate going up occasionally with dizziness. I am generally not an anxious person, so wondering should i try Propanalol, but my BP is always lowish.
FYI I have a diagnosis of MAV from one doctor and a diagnosis of SEH post PLF from another. I personally feel they are synonymous. I’ve written extensively on here about that.
I used to get wild visual hallucinations of rocking until I started on Ami. This has mellowed over the many months first into a mild swaying feeling then into a push-pull sensation. I’m now at about the 2.5 year mark from the big bang and 2 years into ‘MAV’ phase and this has all but disappeared.
My tinnitus started about a week or two after my big dizziness started. I suspect the etiology is a degree of hydrops which is steadily worsening to a point hence the escalation of symptoms.
My brain does a reasonable job of ignoring it these days. I’m not sure the underlying issue in the ear is much better as PTA has not improved (but it’s not got worse in 1 year either ) and imbalance persists though I suspect I’ve compensated a great deal.
B/L is bilateral. I am in Singapore. I just underwent Calorie testing, but don’t think its conclusive.
What if felt is even if its Meniere s or MAV or Endolymphatic hydrops the treatment is pretty much the same.
Diet, meds… Unless you looking for surgery which might be last resort…
Good to here that it will resolve. Mine is 7 months now…
Yep. If it’s true Menieres it would be very episodic though and result in low frequency hearing loss. You might get away without prophylaxis. SEH and MAV are both continuous and prophylaxis is encouraged for both. One consultant told me ‘take Amitriptyline. I give it to both my hydrops and MAV patients.’
Science has not yet established the etiology of MAV but there is at least one paper that has identified hydrops in MAV patients, see:
Initially months i used to read about Meniere s, got depressed by reading it. So stopped reading about it.
Yeah it can give you health anxiety. I stopped but my thirst for understanding was too great. If it’s making you unwell then stop for a while.
As my symptoms have improved I’ve lost nearly all of my anxiety. Occasionally I get mild depression but most of the time I’m mentally fine. It’s quite testing though!!
James pretty much hit the keynotes on everything you’ve asked, but to this quote above-- I get that sometimes when I’m getting dizzy. It was much worse a couple months ago. I’d pace around to assess how dizzy / imbalanced I really was and held my hand to my chest feeling my heart race and tell myself everything is okay then get back into my bed. If I start to get more off kilter tho the heart rate will pick up. I’m 6 months into MAV.