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Just had a week of ~100% without any medication

Whilst keeping caffeine to minimal levels (which is doing the trick for me at the moment) as my only diet restriction.

Brain seems to have shining clarity and at times it feels like I’m getting my old mojo back.

Even dealt with a cold no issues.

Onwards everyone!

(Some minor symptoms if I’m really picky mostly my ever present low levels of tinnitus, but all easily ignored)

(For reference I’m almost exactly 3 years in to chronic MAV)

PS sure I expect more relapses but I can’t ignore the massive progress and recovery even without meds having given up Amitriptyline just over 1 year ago.

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Now look here. I‘ve told you before. ‘Pride cometh before a fall’. But there you go boasting again and right in the middle of me enjoying my morning coffee! Well, it is decaff and I never hv more than one a day and somtimes I don’t have any at all. It’s no hardship. It’s my least favourite drink actually but I had it made for me today and didn’t like to refuse. Helen

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Decaffeinated is ok in my book :).

Yes yes I know. Just trying to remind people to be positive :slight_smile:

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Oh, yes, be positive. That’s the spirit! There’s always hope. After all, look at me. Fifteen years in come early November, and three years end of this month since I eventually got a ‘probable’ diagnosis of MAV, and yesterday I went to the dentist without needing two pairs of dark glasses and his horridly strong light had no affect at all! Then today I’ve been around three different shops/small supermarkets all, without dark glasses and came out NOT DIZZY! Before the meds 5 minutes in store, so dizzy I could barely stand and ended up days in bed, and months of living indoors like a mole/vampire in the dark behind closed curtains.

That enough positivity for you? (With fingers crossed behind my back for tomorrow!). Helen

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Now you’ve got the attitude! :smiley:

Helen, that is amazing!!! Congrats!!

So great to read this! I think the positive attitude despite the symptoms can take you further :). I am practicing it everyday as much as I can.

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Can I ask how u got off amitriptyline did u get off it slowly? Iv only been on it a couple of months now but I want to try for a baby in a few months so thinking ahead and how to get off it.

Very easy. Down from 20mg to 10, then one month @10mg then stopped. No drama.

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This is amazing James ! Thanks for sharing :slight_smile:

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So how did you know you were ready to stop meds? I’m new here and trying to figuring out the progression of all of this! Congrats!

Good question. I felt the symptoms had reduced enough to have a go at going down. Once I’d gone down by 10mg and the world hadn’t fallen apart I tried to drop again and I was still ok.

My principle yardstick was if I could still tolerate computer screens. I could so I kept dropping.

These drugs are very powerful and you should not take them if you can get away with it.

I also knew Amitriptyline was not doing anything for my remaining symptoms, imbalance and tinnitus so there was no point in taking it anymore.

It took me 6 more months without meds to get my normal balance back (that I hadn’t had for 2.5 years). I’ve had a couple of scary relapses since then but always bounced back. Now better than at any time in the last 3 years.

I’m not cocky though: a relapse is always possible and I now remain very careful with caffeine intake especially.

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congratulations, that’s fantastic.

one of the issues i have is that i never feel quite 100% and i can’t tell if it’s the meds or the symptoms that are making me feel a bit weird even on the best days.

i’d like to come off the meds as soon as possible but Dr S has just advised me to ease up my gabapentin dose to “mop up” the last bits of the condition.

i’ll probably do what he says as it’s less likely to end in disaster - but, that said, i’m keen to get off the meds as soon as I’m “better” or better enough, anyway!

keep it up, good stuff!

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Thanks! Let’s hope I don’t plateau!

For sure, go with what he advises.

i know exactly how you feel. I feel my good days are stuck at a “bit weird”. If you sleep and rise on same time, eat healthy, cardio exercise and be stress free you get patches of near normalcy.

Take your time on the meds, i came off zoloft and had the most horrible 4 months before hoping on Amitriptyline.