The Vestibular Migraine Community
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My journey


#41

GalGo, I would definitely try to sort out your shifted vertebrae and neck problems, as this can, at the very least, be contributing to your problems!


#42

Thank you Mazzy, it is what I am doing now- exercises to improve posture, neck exercises. Osteopath told me that she moved my 1 and 2 vertebrae to right place, showed me exercises how to release lobe pressure and shoulder exercises with tune up balls for miofassia trigger points and stretching for sternomastoid muscles. Also I am trying to change my slipping position - I used tiv sleep on a left side only.
Gave a good week and thank you for reply


#43

Good luck with the exercises. I will be very interested to hear whether this helps any with your symptoms, as i am working on several personal theories.


#44

Muzzy, I will. As of now I can see the straight connection between volume of my tinnitus and muscle tension. Clonazeoam is the best medicine for me meow to reduce simptons but I am trying not to use it more than 0.5 mg per day to avoid dependency. Clonazeoam for anxiety is like painkiller for migraine, just reduce symptoms but not cure.
I am also thinking to start vestibular exersises again, I did it in a beginning of my journey, also I am doing computer based visual therapy that trains eyes muscles, it looks like my lift sencetivity became better. In fact I was doing a lot before my tinnitus and hyperacusis hit me in September 2016 and some day felt almost 90 % without medication. Tai chi helped a lot as well as computer visual training.
Can you write little bit more about your theory, I really hope that I will be able to find a reason why I got this condition and try to work in this direction while on antidepressants. Thank you, have a nice day.


#45

Hi James. Have another question for you as it looks like you had ( I hope in past) very similar simptoms. Did you have increase in sound sensitivity by the end of day, or just some day when weather is bad or you are tired? I am on 20 mg of Nort for a month , but didn’t notice much difference with this symptoms , as well as with ear pain and pressure, strange sensation like pressure beside my eyes and almost every night ear pain along with increasing Hyperacusis and tinnitus. My neurologist recommend to increase Nort to 30 mg , I will try to , but increasing to 20 gave me increase in heart rate and also fatigue , so I am not really sure. I feel very depressed from all of that as I am not able do much . Before it hits me I was a super active person who managed everything- job, family, fitness, activities with friends, but now I am lying on s couch with my dog on top of me and hardly made some dinner for my poor husband. Sorry for complaints … but it’s raining already s weak in Toronto and it looks like this weather also affects me.
Please tell me if your Hyperacusis gets better over time? Do you consider another medication on top of Ami? Or try any. Many people suggest Topomax or Verapamil for ear pressure…
somehow I don’t trust my neurologist - he , for example , recommend me to increase salt as my pressure drops when I rapidly stand up, but as far as I know lowdodioym diet is recommended for people with MAV. Definitely, he think that I only have depression and anxiety. For sure I do now, but it’s from all this vestibular things - my brain was scared of vertigo and poor thing - still can not compensate.
I know you are very active now, I was trying to follow your example and did 20 min on trademill after which I got terrible migraine on top of everything :frowning: The only activities I am going now it’s fine walking and restorative yoga. But find day like today I can’t get out a couch, feel sorry about myself and crying on my mom picture - it’s her birthday today and she and all my family are far away. Sorry again for vent


#46

Vent away GalGo! The Monster is really the pits!

Yes, I was good until end of last year then gave up my thrice weekly run. I did really well January but I’ve steadily got worse and had several relapses including the emergence of tinnitus in my better ear (which died down thankfully).

Yes, the Hyperacusis & Tinnutus has got slightly better as has HF hearing because when I’m on my local light railway the moving alarm is much less painful now. I think the brain has a hand in making it better because my dizziness is not always better.

But here’s what you may need to do to help yourself as much as possible:

  • do as much exercise as possible for all sorts of reasons
  • eat healthily as possible and avoid ‘crap’

I’ve started on a working hypothesis that MAV is a lot like Menieres but without the profound hearing loss. I’m convinced now there is an element of retention of water in the ear - i.e. Hydrops.

There are a few things you can do to reduce this - eat diuretic foods (there are some good lists on the web) avoid excess carbs, avoid nasty salty snacks, drink lots and lots of herbal tea and make sure you do enough exercise so you sweat! This advice is probably similar to ‘the migraine diet’ but its calling it out for what it is - preventing you retain water - which I believe is the crux of the problem. I could be wrong but why not try? I note that one board member - Beatles909 - instigated a big exercise program and cleaned up his diet and without meds became dizzy free, so it can be done!

Yes I haven’t increased my Ami above 20mg, but in any case I think these drugs are simply ‘covering up the cracks’ and making life more bearable. To make yourself truly better you need to address the pressure in the ear. Try those things I’ve suggested and report back!! One possible medication I might consider is a diuretic, but you may be able to achieve the result more healthily with the right food and lifestyle. There are other options, but they just address the headache/brain element, they don’t fix the ear trouble. However, if they work it might reduce the stress of the condition and therefore help with ear health (which appears to be harmed by stress)

Stress must be eliminated completely - walk away from it - refuse to accept it and don’t take it on from others - simply say that it will not be tolerated because you can’t deal with it - and if you get improvements take solace in those to reduce your depression and anxiety.

If you exercise try to drink a lot to prevent you getting a headache. I still get headaches after a big run sometimes, and must remind myself to drink lots!

Good luck with your next phase!


#47

So I wanted to post some cautious good news.

My last vertigo attack was now just over a month ago. I should kow better than to suggest I’m done with vertigo attacks, but this is the reason why I’m hopeful: the feeling of fluid i’ve had in my ear every morning has now GONE! It’s like there has been a leak for over 2 years and its finally STOPPED! This is HUGE! For the last month or two this feeling has got significantly less and less until it has eventually stopped completely.

Not only have the vertigo attacks stopped, but that awful feeling of swaying at the desk has all but gone and imbalance has all but disappeared!!!

Tinnitus is still annoying at times, in fact its almost the only symptom I have left together with a feeling of very very slightly pulsing head pressure on rare occasions.

So 2 years and 2 months from when this all began I’ve got a strong feeling significant remission is about to happen …(the nurse I met at my local GP was right “ear’s take a long time to heal” too bl&&dy right they do!!)


#48

I am very happy for you!!!


#49

@turnitaround Congratulations! I hope your success continues.


#50

If you were feeling so much better I wouldn’t mess with a good thing! I’ve tried this so many times, and in all cases for me at least it sent me back in to a tail spin. Was like starting all over. Good luck!!! :slight_smile:


#51

Margaret you mean giving up meds? Yes. No intention of doing so for a bit. I know my ear is leaking still on occasion and without fully healing the secondary Hydrops probably won’t go away so for now it’s maintain current course along with the minor physical care I’m taking (don’t bend down, double pillow etc)


#52

Every time I’ve tried to come off of an anti-anxiety medicine it seems to send me in to a tail spin. Since Ami is used for anxiety, depression, as well as migraines, I just meant be careful coming off because you finally feel better. :slight_smile: I may have missed a further update though. Have you titrated all the way off successfully?


#53

It’s also used for Secondary Hydrops

No im still @ 20mg. I can still sense the pressure because of the occasional pulsative tinnitus. But apart from very minor imbalance and the annoying noises from the bad ear I’m doing pretty good!


#54

Oh good!!! What’s your official diagnosis? Just MAV or ears too?


#55

My latest diagnosis is Perilymph Fistula with Secondary Hydrops.


#56

Do you get migraines as well or just the dizziness?


#57

Without Ami I did get migraines on top as well as visual vertigo & hallucination for a phase of this starting about 6 months in to the chronic phase . It’s hard to say if that would still happen now or I’ve acclimatised to the Hydrops enough. I’m confident I’ve never had ‘MAV’. I’m not even sure if a MAV diagnosis will survive as a medical category.

The start of this was so clear to me: trauma to the ear followed by acute dizziness and nausea for 5 weeks and a feeling of fluid in the ear every morning after the original incident. A feeling that has morphed over time and is now ‘drying up’ over 2 years later. The Hydrops phase started 5 months after the original incident as unfortunately the fistula had not healed and still hasn’t quite healed . Hydrops can be caused by leaks as the ear attempts to overcome the drop in pressure by raising pressure.


#58

Sorry I’m asking so many questions. I only made it one day on Ami and quit because I felt so dizzy. I often wish I had tried to stick with it because a lot of people seem to have success with it, but the additional dizziness and fatigue freaked me out. May try again one day if the combo I’m on doesn’t work. They tested my ears for years and used to tell me I had both migraines and secondary hydrops. I went to Duke University a year ago and went through a 3 hour test process and my ears were ruled out. But I’ve always told every doctor I’ve ever seen…since the very beginning of this 11 years ago…that my ears feel “full” when I’m at my worst and I always get ringing in my left ear before a migraine hits later in the day. It’s all so weird. I often feel that none of the doctors really know what to do about 24/7 dizziness and migraines. Wish someone would figure it out! :expressionless:


#59

Do you ever get a feeling of fluid? My leak is so obvious! It collects overnight in my middle ear and when I get up it drains away. It’s in my middle ear which is why it doesn’t come ‘out’ of my ear canal. It presumably goes down the eustacian tube. This is what was causing me the sensation of temporary muffling and bubbling.

Most fistulae are supposed to heal spontaneously if given enough time (read months, or years!) but I suspect some are very much more stubborn!!! The pressures involved can conspire against a wound fully scarring over. If that doesn’t happen you are stuck with the Hydrops because the pressure won’t calm down if there is still a leak.

The only other option is then: surgery. But I suspect for someone who’s suffered for more than 5 years with this crap that’s a risk worth taking.


#60

Yes, but actually there are still some doctor’s out there who know. The one I found late last year inspires confidence and I feel he knows what he’s doing. PLF’s are considered to be very rare by most doctors but I suspect they are not that rare at all!!

Imho, the whole medical dogma that seems to have grown up around ‘MAV’ is the problem.