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The Pizotifen Diaries


I felt better for few days with them, then back to square one. Good luck!


That may be for long term use.


Yes, but I am assuming that if I can find a drug that prevents my attacks, most likely I’ll be taking it long-term.


Guys this is @gidlabu’s diary thread can I suggest discussing this in a dedicated, separate, thread? :slight_smile:


me again.
right, about 10 days into gabapentin on top of my trusty pizotifen. so far, it’s been easier than i thought, and it seems to have made a difference. tiredness and a bit weird the first few days, but quite quickly my body has seemed to get used to first 100mg pd, then 200mg pd… soon going up to 300mg pd. getting used to the med has been MUCH easier than getting used to pizotifen.

early days but it seems to be helping. still getting some migrainous symptoms, but less dizzy, less floaty and imbalanced. things look more like they used to - i.e. in the right place, and not moving around…!

last night i drank a few bottles of red wine with some friends and ate chocolate. big NO NOs but i feel ok today, a bit hungover but hey.

i’m hopeful that the pizot + gaba combo will get me further along.

it’s funny, i was quite scared of starting this drug, but so far i have had very few side effects apart from some quite manageable drowsiness.

i remain hopeful that this will keep helping… fingers crossed!



Gabapentin is a friendly drug. Max dose is like 9000mg for nerve pain so no risk of overdose. But I used to feel doped when I took it for anxiety.


Update time!

I’m currently on 2.5mg Pizotifen and 500 mg Gabapentin daily (moving up to 600mg next week), as prescibed by Dr Surenthiran.

Well it’s still a bit lumpy but i think i’m making progress. last week I had 4 days without symptoms, which is definitely a record for me. first clear run in the last 9 months.

of course i went out to celebrate and drank far too much and had a couple of rocky days after that. back on the straight and narrow again now so i can try work back to increase my symptom-free days.

i wouldn’t say i was anywhere near 100% on those symptom free days, because i know that there were things i might have done that would set it off, e.g. heavy exercise, etc. but within the limited scope of my reduced activity routine, i was symptom free, and i took the kids sledging 4 days in a row (we had a dump of snow), and i was fine in the snow (glare was no problem) and fine sledging down hills… so :sunglasses::snowman_with_snow::+1:

the meds definitely make me feel a bit dulled all the time, but i guess that’s what they have to do to be effective. i am finding it progressively easier to function, even on symptomatic days, so, although i’m still a long way from being clear of this horrible thing, i am at least pleased to be making some progress and pleased to be able to do stuff.

interestingly, when i was on holiday a few weeks ago, i started to get mild episodes of very distinct imbalance, just like i did before this whole thing kicked off. they were completely resolved by taking 900mg aspirin and 20 mins sleep. it is odd but i hope this is signalling that the condition is getting milder.

4 good days last week is a big breakthrough for me as i seemed to be constantly symptomatic with 5-7 ‘bad’ days a week before. i can definitely see that it’s episodic now. i just need to get those episodes about 40 years apart… :joy:

i still get frustrated of course, but when i think back to the worst days, i have to be pleased with where i have got to so far. i would say overall I’m doing ok, not amazing, but ok. back last summer i was down a deep horrible MAV hole, so OK seems pretty good.

and, for all you people who are still going through really awful days, there is some light at the end of the tunnel. medication, lifestyle changes, diet etc - they do seem to be working (albeit slowly). i hope that everybody can find the right meds/life changes to give them some relief and hopefully even full remission one day!

good luck!

Gabapentin success stories?

Thanks for regularly posting updates. Nice to see your slow and steady progress. Good luck to your continued healing.