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Gidlabu's success story

Hi @gidlabu

This is great - and very encouraging for everyone. I think Dr S is excellent - I am so glad I found my way to to him last year! I am sure you will be able to come of the meds at some stage!
Jan x

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Hi Gidablu
A massive congrats on getting to symptom free - a remarkable state to be in to which we all aspire. Your post gives hope to the rest of us that this can be achieved. I am doing well on Effexor 125mg but am not so well that I can say I feel like “it never happened”. I recently changed neuro and she is determined to get “full symptom control”, in her opinion anything less than that is just limping along. She is talking about adding in another med, possibly beta progane betablocker if I am not fixed by the time I get to 150mg Effexor. I tried Candesartan 6mg and 8mg before but it dipped my BP too low - can I ask what dose you are on as it would be interesting to hear how little/much was required to get you symptom free.
Thanks
Karen

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Hello everybody.
I thought I’d check in and give a little update.
I am still symptom-free nearly all the time :sunglasses::heart_eyes::partying_face::+1::drum::star_struck:

On 6mg Candesartan and 2.5mg Pizotifen daily. I’ve been having some side effects from Candasartan (nearly blacking out occasionally when going from bent over like tying shoelaces to standing up rapidly) but these are tolerable as not too frequent.
Still on Keto diet.
A handful of mini-migraine auras lasting not more than an hour each over the last few months, notably when I stopped candesartan for a few days. But that’s all! Amazing!
I’m not ready to come off the meds yet, although I really want to, I’m going to wait until Dr S says the time is right.

Overall, I just feel pretty normal nearly all the time.

I hope this gives you some encouragement if you are out there feeling as sh*t as I was 2 years ago…

Good luck everybody. Persevere, keep trying different meds to find what’s right for you. And cut the stress as much as you possibly can.

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That’s fantastic! I just dropped my workload by about 65%. YOU have been on my mind for several months. I find myself thinking, @gidlabu did it. So can I. Thanks for the much needed encouragement, even when you’re not around and don’t know you’re doing it. :slightly_smiling_face:

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Hey
I went up from 4mg candesartan to 6mg daily (plus my usual 2.5mg Pizotifen) and I have had pretty close to zero symptoms in the last month.
:+1:
Also still on low carb/keto diet.

I have been working a lot, doing a lot of screentime and driving long distances - all seem ok :+1:

I have gone back to drinking coffee :grimacing: but surviving it so far.

I hope this drug/diet combo will do the trick so that eventually I’ll get off the meds…

Good luck to all those out there still searching for the magic recipe. It does exist, but takes a while to get there…!

:sunglasses:

PS also on magnesium and Vit B2 daily as per Dr S recommendation.

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Great stuff! What leads you to believe you still need the meds?

Good Q.

I stopped for a few days in the spring and again in summer and immediately got classic migraine.

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Well if you are tolerating them with minimal side effects then no rush. Personally I got sick of the slow bowel so eventually the off meds symptoms were less than the on meds!

Keep up the good work! :weight_lifting_man:t3:

Glad to hear again someone is going great! May I ask how is your sleep? Do you have any problems?

I sleep like a log - Pizotifen does that!

Have you gained any weight on Piztofen?

Yes, loads. Small price to pay for getting my life back. I have lost most of the weight now.

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It doesn’t help me sleep at night unfortunately!

Great news!

Greetings, Earthlings!

amid all the misery, I thought I’d share a ray of light. :sunny: :stars:

I have had no more that an hour’s worth of very mild symptoms this year, maybe once or twice felt a little fuzzy-headed. aside from that, i have virtually forgotten about MAV (MAVid?)

:partying_face: :sunglasses: :star_struck: :upside_down_face:

so, for those of you too young to remember, in 2017 I suddenly got MAV bad, having never really had migraines before; it took ages to diagnose, i felt like doo-doo every day, was completely unable to do most things, it was horrible. i tried amytryptiline, couldn’t bear it. after a few months i found Dr S, who put me on pizotifen, which started to help right away. i got about 50% better then stayed stuck at that level for a long time, Gabapentin didn’t help much, although time did. Last year came off gabapentin and started candesartan, and haven’t looked back since. symptoms have just dropped away and stayed away.
i’m still on 2.5mg pizotifen, 4mg candesartan daily; i hope to titrate off some time this year, but i’m not in a hurry as they seem to have settled into giving me no side effects now (unlike at first).

anyway, happy days. :blush:

now all i have to do is stay the fuck at home and avoid coronavirus, and hopefully I’ll be ok!!

for those of you who are in the dumps with this, i remember in 2017 clutching at straws and wondering if i was condemned to a life of MAV misery. i found these success stories really gave me hope whne nobody i knew had any idea what i was talking about. so -soldier on. you’ll get there; eventually you’ll find the right meds, the right lifestyle; the right diet, and you’ll recover. keep trying. don’t give up.

in December i went on every ride at Universal Studios, Florida. i didn’t feel any more sick than anybody else, and a lot less sick than some. that was the biggest test. even the virtual reality roller coaster rides were fine.

now i can go out and do anything i like. except i’m in lockdown, so i can stay in and do anything i like.

don’t worry, be happy, eventually you’ll get better. give it time. :man_superhero:

stay safe, people :man_scientist:

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Thanks so much for the update! So pleased for you!

So you are basically a MAVid Recoverer after alll?! :slight_smile: :+1:t2:

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:+1:

Really great to hear. Wow!! Rollercoasters!!

I like reading about positive success stories, thanks for sharing. I think it is important to remember that Vestibular Migraine seems to be unique for every character who gets its and so are the recovery solutions. It needs experimentation.

My two main solutions have been the Heal Your Headache diet and my therapists balance and visual exercises. I’m about 70-80% of what used to be normal. I’m functional and okay, and don’t get real bad too often. I’m avoiding prescription meds. I find that I best when I am active and working my balance and vision training, skiing or biking or just walking while twisting my head back and forth. The visual training seems to keep my brain on its toes. Teddy Roosevelt wrote in his diary “Black care rarely sits behind a rider whose pace is fast enough.”

Glad you are mostly better and have figured out how to manage your brain. Keep riding onward.

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This is amazing news. Congratulations and long may it last.