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My journey


#1

Hey all,

New here, but have been skulking around reading for a little while.

I’m living with a working diagnosis of MAV which came on whilst watching a projector at work. Symptoms started with imbalance and episodes of nausea then progressed to include tinnitus and then vertigo attacks and finally pronounced visual vertigo that made visits to the supermarket very uncomfortable as well as using a computer for any decent length of time. MRI was clear, hearing test shown only minor high frequency loss, though I’ve always had one better ear. Oh and the stress appeared to bring on TMJD. One morning sitting up in bed my right jaw muscle went into spasm and it started to click. Seeing the dentist for that … what a bore. I’ve also had a bit of episodic ear pain and strange sensations of fluid in the ear which tends to clear within a few minutes generally (although i’ve had it last for 24 hours too).

Initially I was on VRT and had Clinical Psychological counselling. The latter was particularly helpful and let me get to grips with my tinnitus which was (and sometimes still is) hard to bear, especially when ‘playing up’. I had a really good remission of the vertigo attacks to begin with without need of any medication. Unfortunately after attempting to return to work the attacks started again.

When I expressed my frustration with my consultant she recommended I perhaps try some medication to control what she believed to be migraines (I feared I had MM).

Started on Propranolol but immediately this started to slow me down and after a week I had scary chest pains so came off it.

My next drug was Amitriptyline, initially 10mg, but the plan was to escalate to 30mg.

The first improvement was sleep - I started to reliably get 8 or 9 hours sleep!

After only 3 days my vertigo attacks stopped and I have been almost 100% free of visual vertigo and fluid in the ear, though sometimes I get a slight pain in the ear. Tinnitus fluctuates in annoyance and generally is worse by bedtime.

I’ve remained on 10mg and have been attack free for nearly a month now, so considering another attempt at returning to work.

However, i’m still feeling slightly dizzy, but its not the same dizziness from before which was sometimes very asymettrical, more a light headedness - is this an effect of the drug? I’m basically about 70% of where I was before I became ill but all of the time and more stable, versus the fluctuating symptoms I had before.

Does this get more pronounced the higher the dose or is it possible I simply am not taking enough to reduce the dizziness?

Is the point at which the visual vertigo goes and the attacks stop a sign that you are taking enough?

More generally, could some of this be TMJD - I read one of the symptoms is dizziness, and interestingly I read that Ami is used to treat TMJD too!

Given my apparent success on a reasonably low dose of this drug, does anyone believe there could be an even better alternative that could eliminate the dizziness altogether?

And finally, has anyone’s T improved once their other symptoms had stabilised? Mine presently is getting more annoying, not less, and more pulsative, particularly later in the day. Hearing doesn’t seem to be degenerating I’m glad to say, but I will get this confirmed formally in a year or two.

Thanks all, and good luck to you all, this is indeed a crazy condition that requires a lot of strength to bear.

James


Does this sound like MAV? PLEASE help!
New - could do with some support!
#2

Hi James,

I’m constantly posting and not sure what use my commentary is to everyone else because I know that we all respond differently to drugs and stuff (I’m SUPER med sensitive and am trying to find a combo of natural supplements that will work enough so I can wean myself off my gabapentin).

Right now I am taking 100mg of gabapentin 3x a day and have found it very helpful. The side effects emotionally and physically are a lot less onerous than the other drugs I have tried (nortriptyline, topamax) - but it does seem to slightly interfere with my sleep a bit (I wake up more) and bloat me a little bit even at this tiny dose. The half life is short with gabapentin so the dosing is three times a day.

BUT the most helpful thing of all that I tried was 400mg of CoQ10 (the Whole Foods brand that has the kaneka type of that vitamin - not sure if you’re in the USA) and 400mg at least of magnesium glycinate (I use the KAL brand which can also be found online or in some Whole Foods stores). Those two supplements are golden. For some reason CoQ10 is amazing for reducing my light sensitivity. All together, the gaba plus these two supplements make me feel like I almost don’t have any MAV at all and I can drink coffee and red wine with no problems really (within bounds). I also don’t get any breakthrough headaches on this combo.

I’m going to try to be brave and do a day off the gabapentin (I’m so low I don’t really need to titrate off I don’t think) and do the supplements alone as I had done for a week. It takes a bit more self control with diet if I’m not using the gabapentin to avoid my biggest triggers like tyramine rich foods (nuts and overripe fruits primarily) that make my headaches and dizziness worse. Going gluten free has also seems to help.

This condition as you say is definitely very difficult. The medications I’ve taken sometimes have helped reduce the dizziness but they come with sx as well that I don’t know if I want on top of the illness. So I’m praying the supplements will be enough, as they seemed to be before. Keep us posted about how your’e doing and I do recommend gabapentin of all the drugs. For me personally it worked very well at 100-200mg 3x a day but then when I went higher I got woozy.

Best wishes,
Liv

PS Just posted in response to someone’s query about nortritpyline (related to amitriptyline) but I did feel dizzier for a week on nort. when I tried it but after a week it magically helped so much and made me feel better. I couldn’t take it because of my body’s reaction to it in other ways (bloating and fast heart beat, which is rare).


#3

Thanks Liv, i’ll ask about that medicine.

The difference ami has made to how i was the month before … well if anything can top it i’ll be extremely pleased!


#4

Hey James, When I combined nort. at 10mg with gabapentin at 100mg 3x a day (8am, 2pm, 10pm - ish) I had some of the best days - but that was only short lived for me because I can’t take nort. without getting super bloated. I don’t know if it’s a female thing, but I gained 5 pounds in just one day of starting it in water weight! It was largely in my face too that you could tell I was having that reaction so that was not great. I’m not super vain but it still bothered me. Gabapentin has low sx but it does tend to sedate me a bit. That can be nice sometimes but I am going to see whether I can endure things with just supplements since my job requires a ton of thinking and being active. My family is pressuring me to keep on this path in my career but I don’t know how much more I can do if I don’t feel ok on the supplements. Feel better!


#5

I forgot to mention this article as it relates to you, James. I am in touch with the girl who wrote it and she is titrating off her meds now and I think she’s in a remission. It sounds good. She got relief in full at 30mg like you said you were going up to. She was on that dose I think for a year along with the zoloft (which seemed to help her as well).

Best wishes,
Liv


#6

Thanks Liv, that was an interesting read … i’ll discuss that combination with my consultant


#7

Hey there, I’m doing really well today after having quit gabapentin just on the supplements - magnesium glycinate and CoQ10. Some random dude in Whole Foods had recommended this to me in combination for migraine. It’s a fricking miracle. Give it a try before you try other drugs perhaps.


#8

That’s great news! I agree, i’d prefer not to have to take them, but my existence before I started on Ami was far from pleasant. Maybe i’ll be off them in the future. Noted.


#9

Hey! Yes I know what you mean entirely. These meds may have helped to calm down my nerves slightly and maybe that’s part of it. But I do think that the magnesium glycinate and CoQ10 (kaneka formula of it) are critical for me. Petadolex also seemed to help but I am trying to stay off it to see if I can survive and function w/ just mag and CoQ10. I hope to have kids at some point and I just want to see what i can do to maintain a functional baseline on these two supplements w/out caffeine added to the mix. Alcohol does not have the same effect as coffee unless I really overdo it. Keep me posted how you find ami. xx


#10

Liv et al,

An update on me since I wrote all this …

I upped my dose to 20mg on which I remain. The increase further reduced symptoms, though has had no effect on tinnitus.

I’ve been able to go on a long bike ride (I was already able to get out and walk) and i’ve recently travelled out of London to a couple of other cities.

Balance is much much better and on several days of the trip had nearly no dizziness at all. I been lugging a heavy case around with no issues and climbing steep hills comfortably. I’ve only noticed slight feelings of not being ‘quite right’ and this was definitely true a day after having a couple of glasses of wine where I felt a little bit of nausea, but probably no worse than a normal hangover as my old self.

Tinnitus continues to fluctuate, but I’ve had moments where I could not detect it at all, but has since come back as annoying as ever. And as with all symptoms, you tend to focus on the ones that remain, so now the dizziness is under control mainly, tinnitus is the bad guy.

I’ve had no visual hallucinations and generally i’ve been upbeat and happier.

So I think i’ve proved now you can lead an almost normal life with MAV so long as you are having the right treatment.

Hope this is helpful as a positive post,

Cheers,

James


Do symptoms/relapses get worse over time?
#11

1 year, 2 months in … not much has changed … still have tinnitus and fluctuating balance, but live a pretty normal life. At work 3/4 of the working day at the moment. Have completely ceased alcohol consumption, but I eat anything I want to, but try to eat healthy. I have max one coffee a day, though have had two one afternoon and it was fine. I’ll admit I go out far less than I did and its more of an ‘effort’ to go out, but I am physically able to, its just not so compelling anymore.

On Amitriptyline @20mg relieved me of most dizziness, though I still get odd mild non specific motion oddness most days. You learn to ignore it. Sooooo nice to feel the firmness of the earth beneath your feet once more!!

Sleep is sooooo much better. I wonder if this is one of the game changing elements that makes you feel so much less ill.

I have been almost 100% free of nausea. Maybe had 1 or 2 bad days in 6 months whilst on the drug.

It relieved me of 95% of visual stuff and the remaining brain wobbles have decreased with respect to artificial light over time in both frequency and intensity. I now am almost free of this symptom, except when tired.

Without meds I cannot use a computer or watch video for more than 20 minutes. On meds this time limit is eliminated.

I still get vertigo attacks apparently but the visual element is eliminated. These are very infrequent. I’ve had one in 6 months. Maybe my last??

Only side effects are sleepiness and lethargy in morning, slight constipation and dry mouth. All have reduced over time. I’m told side effects with Nori are less but similar but really a non issue unless you plan to drive during the night.

Finally the drug doesn’t help with ear pressure or tinnitus, though over time these have reduced or I have habituated. No longer need Spotify to play brown noise! However the key to ignoring it is, as with most other symptoms, occupying yourself with something interesting.

I look forward to contributing to the Success Stories thread at some point, but I’m not there yet - maybe another year?

(I note that the condition does seem to significantly reduce by the 3rd year for many people judging by other posts)


#12

Hi all,

I have constant dizziness spells over the past 4 years and only now I think I may have a right diagnosis. Over 3 months ago my doctor diagnosed me with MAV. Surpringly, I have very similar symptoms to the ones @turnitaround describes!

My doctor prescribed me with Depakote, which I took for around 3 weeks. I had to stop because I had very strong adverse effects, including headache and extremely disturbing dizziness spells.

I just came back from visiting him again and we agreed I will start taking Amitriptyline. I am very happy to read James’ story and I am looking forward very much to starting the treatment.

Will report back after a few weeks.


#13

Best of luck!


#14

So its now February 2017, and i’m coming up for 2 years into the whole horror and about 1.5 years from the onset of full on MAV.

My vertigo attacks seemed to have disappeared, as have my morning spinning attacks in bed. My balance is WAY better and I don’t get a different kind of imbalance every day like I used to. My tolerance of artificial light is far better, I’m better in crowds. My tinnitus is still annoying but seems to have subsided a touch. I don’t get as much ear pain. When bending down I don’t get as much extra tinnitus and some days I don’t get any extra tinnitus. I’m living a pretty normal existence now.

It’s all starting to feel like this is going in a positive direction, so tonight:

I HAVE STARTED TO TITRATE DOWN, I pill cut to take only 15mg of Ami tonight … we’ll see how this goes!


#15

Hi James,

I was on Amitriptyline 25mg and 50mg. It definitely helped with sleep!!! I had a side effect of trouble urinating and came off the medicine. It didn’t do much for headaches as I was on it over a year.

I had episodic dizziness off and on way before the medicine and while on it, nothing to do with the medicine.

*Always the most important thing to notice: when the vertigo is happening, what were you doing at that moment and where were you at and did you start a new medicine. This will help break it down.

My vertigo started happening in a pattern so I went to the ENT and told my doctor when it was happening, where and what I was doing. I was then given a steroid methylprednisolone which subsided all vertigo. However vertigo can still occur, but it has stopped for now. There are things that can trigger vertigo so noticing what you were doing at the moment, where were you at and have you started a new medicine will help you notice if anything is triggering it.

I then started Nortriptyline 25mg and it helped with headaches! Still have problems urinating and came off the medicine; however that could be my bladder or stress related to the muscles.

I am about to start Depakote.


#16

Hey there, thanks. I understand problems urinating are a common side effect of both as they interact with the neurotransmitter required to pee. Rather than stopping completely your other option is to just reduce your dose? Can be effective even at 10mg depending on need. Also I found this side effect ebbed away with time.

I’m positive my vertigo is due to some disturbance, air bubble or debris within the inner ear fluid. That has subsided but almost always occurred after sleep. I don’t think vertigo is to be feared. It’s just the fluid equalising or a bubble giving a false reading of movement in my humble opinion and I can’t imagine that disturbance will remain forever, hence it goes away of its own accord.


#17

hi turnitaround how did you go on lowering your ami dose? all good I hope!


#18

Gah!! I feel slightly stupid. I thought I had got better more than I had. Stupid me!! Of COURSE I haven’t got better yet. Lol

Well I managed it for two days, then felt uncomfortable (I could feel the discomfort coming back when you move your eyes) so decided to not push it and returned to 20mg. I’ll give it more time. But I tried.

Second downer: I had vertigo attack (minor spins) in bed this morning after a month break. A totally minor attack but still annoying. No hang over though so there’s something.

Patience is what I need!

My positivity was a false alarm, sorry! :joy:


#19

well at least you tried,maybe abit too soon, the vertigo attack may have been from lowering your ami dose, im sorry you had to deal with that do you feel ok now? I know what you mean when you say more patience is needed im very impatient, I havnt gone to work today as I still feel rubbish!


#20

Yes thanks. We can but try! At least I reaffirmed the necessity of the medicine. I have been feeling so normal of late it was almost like it was unnecessary. On the plus side it shows you can feel normal even on the meds.

My theory on the vertigo attacks is that they relate to a disturbance of the fluid in the inner ear. Possibly bubbles or debris. This moves around and can sit in your canals harmlessly until one day it reaches your sense organ and confuses you. This is possibly why you have had a relapse.

Over time this debris and or bubbles decrease. Which is why some people see less symptoms over time on average.

I have a sensation of bubbles bubbling up in my ear most mornings when I first get up. I believe this has decreased over time. I think it’s related