The Vestibular Migraine Community

GetBetter Chronicles


#1

Hi All,

I am pretty much down and depressed as this has been going on for 13 months. Bear with my story will keep it short. I had multiple short bursts of vertigo for a day and was diagnosed with Labrynthitis in August 2016 by my ENT. This was due to a high frequency mild hearing loss in right ear. Chronic symptoms stopped in 3 weeks after a heavy dose of Prednisone. But it came back a month afterwards with mild non-specific dizziness. It ended with continuous imbalance when i walk with tilting from side to side and the feeling like walking on foam and tinnitus in left ear.

I was told i was decompensating and send to VRT which i did diligently for 4 months. At the same time i started Zoloft i was at 80% largely due to the Zoloft and took it for 5 months. 2 months after coming off Zoloft in June this year i had blurry eyes, eye pain, headache and constant dizziness with very short vertigo spells for weeks together and i was in a constant state of pain. Went to a neuro-otologist and got my official VM diagnosis.

I started on Amitriptyline 20mg and still on it. It has helped my eye blurring, pain and headache and the short vertigo spells dont occur and i sleep really well. I still have the constant imbalance, tilting while walking and walking on foam symptoms and this is making me depressed. My Neuro-otologist has advised me start on 1/3rd of the Effexor XR.(Dr.Hain’s favourite)

Should i start the Effexor XR, as i have read bad withdrawal symptoms and side effects like insomnia. Also i am not confident that Effexor will fix my dizziness as i keep thinking something is wrong with my ear(Secondary Hydrops, Fistula etc…) . Effexor can only fix a chemical imbalance in my brain. Should i still give the Effexor a shot ? The zoloft helped the dizziness in the past so anyone thinks the Effexor could still help me ?

Any help and advice appreciated if you have tried Effexor. Also should i keep the Amitriptyline dosage the same. I am at my wits end and if not for Effexor i don’t mind going back on some SSRI(Zoloft) to help my mood as i am in the dumps right now.


Hello, new to this forum, suffering from MAV about 7 years
#2

Vignesh, I could have typed some of that. I have only tried Amitriptyline but our symptoms are very similar. It’s a really bumpy ride psychologically.

I am now off meds completely but not 100%. Brain seems to have compensated mostly though. The crazy imbalance is gone which sounds very similar to yours and that walking on sponge feeling I had until I upped my dose on Amitriptyline.

I was almost at my wits end too and still have down days. But take heart that for most compensation does come. My neuro said 95% recover. She told me not to give up. You shouldn’t too.

Sorry can’t help you on Effexor but if you search there are many board members that have used it with success.


#3

Hi James,

Thanks for responding. 95% compensate that’s good odds. I go for 30 minute walks everyday. Infact i look forward to these walks. I hear they help with compensation and personally they have a meditative quality to it. Do you do any running or gym exercises, i have tried running once in a while it does not seem to make things worse.

I also set aside time and do my VRT. I don’t find that the VRT exercise per se improve my dizziness but knowing i can complete the VRT gives me confidence. Also my tilting is never to the same side at the same spot. I have different sensation happen in the same location which i was told by my neuro-oto can happen with migraine. No wonder my poor brain is struggling.

Do you feel tired because of the Amitriptyline, don’t know if my lack of energy is because of the Ami.I also find it difficult to get out of bed, i sleep longer than usual. 6 weeks on Amitriptyline.

Also having a tough time keeping my day job with this chronic imbalance thingy. Did you take a break from work or you continue working ? I feel i will lose my mind if i don’t work as i cannot sit around waiting for my brain to compensate


#4

Yes, I love walking too and have found that this has kept me sane. This is a really positive exercise. I sometimes walk for 1.5 hours a day. Strangely when my symptoms were at their worst I found running MORE comfortable than walking. with walking you are reminded of all the subtle and not so subtle imbalances with almost every step, with running these seem to be obscured and are not an issue. (I have a theory that the brain relies less on the inner ear when running because of all the jiggling up and down might compromise the sense a little).

I gave up on VRT as it was giving me migraines, I don’t regret that as I have made significant progress regardless. Your mileage may vary and if its working for you, great! (and who knows the weeks I did do it may have helped).

Yes the downsides of Amitriptyline are few, but drowsiness in the morning can happen. I found the dry mouth went away and alertness improved. Bloated gut and mild weight gain was a side effect that remained however.

I struggled with this condition in my job for 1.5 years, then decided to take a break, the stress of the City job was too great. I am presently not working. Will return once I feel I’m more stable.


#5

I agree with all of you too. My life has changed so much after being diagnosed. I have tried so many pills for this and it’s just the beginning. Don’t lose hope, this MAV train is an absolute awful one and we must continue to be hopeful and know we will have a 100% recovery. It may be extremely confusing to our bosses, our friends, and our closest family members but what matters is health first.

All those derealization feelings suck. I describe your sponge feeling to walking on a trampoline or feeling extremely high- just not the good effects. :smile: I really feel for all of us, I get depressed and down too thinking nothing will ever help but the light will shine on you soon, and that I am sure of. I wish you the best of luck, if you ever need to chat more always feel free to PM me! :cherry_blossom:


#6

Could not agree more with this. I find running easier on my bad days.

Hope in the days to come you are back in your job chugging along with a new stable baseline.


#7

Thanks Kelsey for the kind words. How is the Amitriptyline working for you ?

As much as i hate it when my wife says distract yourself from the dizziness. There is no better way to cope than to keep pushing through life with your daily symptoms.


#8

No problem. I personally had to stop the Ami. Unfortunately at 25 mg i had an allergic reaction as per the doc, I had heart palpitations non-stop and my heart would race for no reason, like upon waking up etc. Once I got off it, they stopped. I’m now trying out Verapamil ER at a whopping 180 mg! And I’ve heard great things about this too just like the Ami so I’m hoping this works well and I can find some relief.

And I feel ya. My boyfriend says the same thing- just tough when they don’t go through it and don’t have the constant muddy/fuzzy feeling it’s not so easy all the time to just push through. But once you realize your symptoms aren’t going to kill you, like you said- you don’t really have a choice BUT to push through; otherwise you’ll be housebound forever and an agoraphobic. Not that that’s a problem but I’d like to persevere, there’s quite the fine line!!


#9

Hi All,

I thought i will use this thread to post my updates as to where i am in my journey

  1. I was on an international flight to India. I felt alright and the long period of sitting was uncomfortable and i felt the claustrophobia getting to me. I kept myself distracted with movies.

  2. Meeting friends and family dizziness felt alright. So tapered Ami to 10mg. Felt alright for 3 days and today was woozy and dizzy. So took 5 mg in the morning and will go back to the norm 20mg tonight. I think i reacted too soon.

  3. Met a leading Neuro-oto in India. He said that i have vestibular migraines but the problem originates in the ear. He repeated my VEMP and said left ear has marked assymmetry in amplititude. Migraines have kept me only partially compensated. He prescribed a multi-vitamin called Diavit. He prescribed flunarizine as the prophylatic. I don’t get this med in the US, it is a calcium antagonist. I am going to stick to the Ami for now. The doc said he has seen many patients with this kind of ill-compensated illness and the triggers decompensate them. The best thing one can do is to train oneself to consider this condition a nuisance rather than think of it as a grave illness.

  4. Diuretic trial is on hold for now.

Overall after 4.5 months of Ami life is manageable :slight_smile:


Western vs Eastern Medicine
#10

So that’s like James said, if you can’t control the migraine then you’ll continue to not compensate. Interesting.
I may be asking my neurologist for ami instead of propranolol and Effexor. I read too many horror stories of withdrawal from Effexor.


#11

Find the med that works for you instead of worrying about tapering or weaning. You can always use htp-3 over the counter serotonin supplement to wean off effexor.


#12

Finally, a doctor who talks straight :slight_smile: Call a spade a spade if it looks like a spade!

Oh it’s most definitely a nuisance!!!


#13

I’m not quite sure I understand these statements - can one of you explain? Are you saying that the brain should be able to compensate for the imbalance (no pun intended) in function between the two ears, but that the migraines keep “getting in the way,” so to speak, and then the brain is sidetracked and can’t focus on just the ear function imbalance?


#14

My neuro compared the issue to two sides of a scale. Each of your ears is trying to bring it’s side of the scale equal to the other side. In a compensated brain, each side of the scale is level and there are no balance issues

What migraines do is cause the scale to move up and down. Rather than both sides of the scale being level, one or both sides is moving up and down, which causes your brain to not be able to read the balance signals properly


#15

Interesting theory, but there has to be a root cause and initial trigger, surely?!

I suspect ear dysfunction is at the root of it as @GetBetter 's doctor has pointed out. The brain is trying to adapt to the change in the response from the misbehaving ear but its learning algorithm gets pushed beyond its limit and you end up in a kind of brain spasm - a migraine. I’ve posted an academic paper on this a few times.

At this point the brain is doing no adaption. If you calm the brain and prevent it going into spasm, you give it the best chance to adapt. However, there will be limits to ‘working around’ ear dysfunction, I suspect, which is why many of us are left with imbalance even though we are getting no migraines. Maybe there is slow improvement over time though.

Vertigo, on the other hand, is clearly a symptom of ear dysfunction … its too short to be a migraine artefact, and I’m sure most people don’t get a migraine with vertigo most of the time. I suspect its down to movements of fluid in the ear - perhaps due to leakage - stimulating the movement sense. At least some positional vertigo being a leak makes some sense as I get that when reclining when head pressure (and so ear pressure) is at its highest.

In any case we can surely hope that the ear settles down too and this is probably the case for many, as a lot of people get remission from vertigo after months or years.


#16

Infact my doc recommended something i can try. Since it has been a while since the acute event this approach could work. I can go on 2 times a day dose of meclizine+ betahistine(SERC) for a month and taper off it for another month. In the two months you do heavy VRT. The meclizine will give my brain a break and the slow tapering will bring back the error signals and the heavy VRT will help the brain learn. I am going to keep this idea in the back pocket but wont resort to this immediately.

Also they found HF loss in my problem ear not sure why my previous audiograms did not pick it up. Probably they dont care about the HF as this is not used in regular speech.


#17

Doesn’t a level of Amitriptyline (vestibular suppressant) and ‘normal life’ (activity) perform the same thing? I’m not 100% but well beyond my dizzy/marshmallow floor days. VRT REALLY upset my brain once I got beyond the basic exercises and I’m sure it triggered migraines. Also VRT fails to emulate the complex variability of environments especially with respect to artificial lighting. Can’t hurt trying stuff though!


#18

Argh sorry to hear that, but familiar story.

Mine deteriorated slightly during MAV then stabilised. 4k is very important for speech (think ‘S’ sound) 8k less so. I retain 100% SDS for now thank goodness.

Interestingly the criteria for MAV specifically excludes hearing loss yet according to my poll HF loss is the most popular group so far amongst our MAVers. I think they need to fix the criteria because HF loss is not typical of menieres without LF loss happening first so it can still be distinct from menieres even with hearing loss added. Also suspect nearly all MAVers never get episodic deafness. Another distinction. Only other explanation is people on here had preexisting hearing loss or have something else, but don’t think there is another obvious diagnosis apart from PLF or SEH?


#19

Changed the title to use this thread to chart my journey

Yesterday was a bad day and i started a new med trial. I picked this med called Flunarizine. It is an old migraine med of the family calcium entry blocker.

An hour after taking it i was getting fits of anxiety and i also had some bad vertigo. The dizziness was a jog down memory lane of how bad i was at various stages in this illness. Then drowsiness hit me hard(expected sideeffect) and so i slept it off. Took the day off today as i was dis-oriented. Phew !

I don’t have the courage to do another 5mg tonight. I will lower it to 2.5mg in the future if i bring this med for trial again. I want to get back to my baseline and hence tonight will be the trusted Amitriptyline 20mg alone.

Med trials are hard. The fact that it made my dizzies worse tells me there can be meds out there which can fix this. Even this med can work if i give it another week or so and endure startup effects. But then i have to get back to work tommorrow !


#20

Sorry to hear this is happening. That’s honestly the worst. Feeling triumphant to be slapped in the face from a long, unforeseen pal. Keep posting! Put it out there and hopefully you’ll find the best concoction. :slight_smile: