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The Pizotifen Diaries


#21

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


#22

That may be for long term use.


#23

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.


#24

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


#25

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!

:sunglasses:


#26

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.


#27

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?
#28

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


#29

Update # again

Hello again.
not much progress at the moment. i seem to be in a holding pattern where i have 1+ “clear” days followed by a week or so of double symptoms, then back to my regular state which is low-level symptoms, then some clear days, then it starts all over.

I’ve just upped dosage to 200mg x 3 daily so 600mg daily in all of Gabapentin, on top of my 2.5mg pizotifen.

so, i’m a bit frustrated at the moment. some progress but not very much since the last posting, and that’s on a lot of medication.

i may make another appointment with Dr S in a few weeks if i’m not seeing much benefit from the gabapentin, to work out whether to up the dose or try something else…

the good news is that i’ve started writing again (novels) and i am enjoying that, although not doing as many hours as i’d like. not really sure if a lot of screentime is a trigger for me or not.

i’ll post elsewhere about triggers, as i have a few questions for the folks on this site.

toodlepip for now…


#30

Hello MAV fans

another exciting instalment of: The Pizotifen (& Gabapentin) Diaries

First, some good news. i have had some periods with very few symptoms. couple of weeks ago i had six days straight with very few symptoms at all! amazing. at it’s best, i felt pretty much normal, even to feeling like i was able to drive properly when driving on the motorway (none of that floaty feeling i have been usually getting). i had about half a day when i really felt crystal clear, like this was GONE, but it did come back again.

then i had 2-3 symptomatic days, but not too bad. and now i’m on another run of very few symptoms for a few days. i have just this afternoon started getting some visual symptoms, so i’ll probably get a few bad days gain, but i can finally see that this 24/7 MAV is really breaking up into separate episodes.

i’m very pleased at the moment. i’m going to see Dr Surenthiran again in a couple of weeks to find out of i should go up again on my gabapentin dose, or stick with where i’m at.

OK - how did this happen?

a few possible answers:

  • three weeks ago i stopped caffeine entirely, not even decaff tea or coffee (until then i was still having some decaff, which has small mounts of caffeine in it). having read Dr Silva’s comments (see VM Survival Guide on this site) i thought it was worth stopping completely.
  • around the same time i also cut out alcohol entirely. i wasn’t drinking often but maybe once a wekk or once a fortnight i was having a few drinks.
  • this happened about 4 weeks after i last moved up doses on gabapentin. Dr S says it can take 4-6 weeks to have an effect.
  • this is also about 4 months after i cut out the major work stresses from my life, and i am starting to feel like a different person without that constant background stress of worrying about work (i had a very high-pressure job)

not sure which of those are responsible for the step forward;m maybe a combination of all of those things.

i would say currently i’m at about 80% on a good day and 60% on a bad day.

it’s almost a year since this horrible MAV thing started for me, and i was at 0% for a long time. i’m sure many of you know what that feels like. anyway, feeling 80% feels pretty damn good. still a long way to go, and this 80% is in a ‘protective lifestyle’ i.e. i am not doing anything mega-stressful, not exercising too much, and having a restricted diet. i am sure the 80% would drop down a long way if i tried to go on an international sales trip, or tried to scale a mountain. so i’m not cured, not yet, still a long way to go.

but i am very pleased to see another step of progress. :slight_smile:

i hope this is useful if you are out there, wondering what the hell to do!


#31

The Pizotifen (& Gabapentin) Diaries: another chapter.

Good news: the last few weeks i have been feeling ‘normal-ish’ more than 50% of the time, interspersed with episodes of annoying but relatively mild symptoms that seem to break up more easily.

i have started upping my dose of gaba again, from 200mg 3 x daily to 300mg 3 x daily. so by next week i’ll be on pizotifen 2.5mg daily plus gabapentin 900mg daily.

i am feeling generally much improved.

some side effects from the gabapentin:
1 - i forget things
2 - i forget things
3 - i can’t remember what the 3rd thing was
4 - i’m always feeling kinda dopey and stoned and a bit slow. it’s not unpleasant, but it does mean i’m not as switched on as i should be
dopiness and mild nausea when increasing dosage

BUT, these are acceptable side effects compared with the awfulness of full-blown MAV.

i would say compared to where i was last year i am at 80-85% recovery. some days better, some days worse. it’s hard to tell if some of my ‘symptoms’ are actually side effects of the meds, like finding long-distance driving a challenge, ie. getting hypnotised by the long roads etc.

i have been able to do some fairly heavy-duty exercise like mountain biking, for the first time without feeling like the world is still moving when i get off.

in another 4-6 weeks from now i should see whether the increased gaba dosage has helped further. fingers crossed.

i’m also seeing Dr S in a couple of weeks to check on my progress, and to ask how far i should go on the meds, ie when do i stop increasing the dose.

i’m feeling pretty good and positive now. a year ago i was in a hell hole and getting worse every day. now i’m feeling generally quite good and seeing light at the end of the tunnel. hoping one day to be 100% or thereabouts! :pray:

that’s all for now.
good luck everybody! you can get there…


#32

Yo MAVericks! it’s me again.

ok - so i’ve been on 900mg gabapentin + 2.5mg pizotifen for a few weeks now at this higher dose. i’ve got to say, it does seem to be working. everything is gradual, but i am gradually able to do more - more exercise, more work, more driving, more mountain biking, more drinking, fewer symptoms… all seems to be moving in the right directions.

i still get bad days, but the bad days now i feel just kinda weird, tired and headachy, with tinnitus (a year ago i was in A&E on the bad days, thinking i was dying!).
and on the good days i feel close to normal - to the extent that most of the time on good days i forget about MAV entirely. great, huh? :star_struck:

at the weekend i spent an entire day boadyboarding, including getting dumped and rolled underwater by some big waves - no problem at all. and being out on the water in intense sunlight all day - no problem! last year i couldnt even leave the house on sunny days. :sunglasses:

progress!

the next challenge is to decide whether i stick at this dosage fro a while or go up again… hmm.:thinking:

fingers crossed that the healing continues. and if you are wondering is you can ever get better from MAV - i’d say yes, you can. and you will.

that’s all for now

Gidlabu


#33

More mountain biking and drinking?! I got get me some of that stuff!


#34

Hey folks

it’s me again. time for another quick update.

so - i saw Dr Surenthiran about 2 weeks ago. he said i am where he’d expect me to be on my recovery. he recommended i keep upping the dose of gabapentin as required up to a max of 800mg x 3 daily (i’m currently on 300mg x3 daily) and keep on the pizotifen. BUT if i have side effects with the gabaP (notably memory loss) then i can come back down on that and go up on the pizotifen instead.

i’m going on holiday next week, so i’m going to wait 'til i’m back before i start to increase my meds.and i’ll do another update then, to keep you all posted on how it goes.

in the meantime, how have i been (i hear you all ask)?

generally, i would say slow but steady improvement. gradually as the months pass i seem to keep improving bit by bit. sometimes it seems very slow, but when i look back to 15 months ago, i through i was dying and i couldn’t leave the house… :confounded::weary::woozy_face: whereas now i’m travelling again, enjoying life, and i’m almost fully functional, most of the time.

what are my symptoms now:
on a good day:
a bit spaced out and sleepy/tired (probably the gabapentin) and not as sharp/crystal clear mentally as “normal” but with good concentration and reasonable work stamina; some mild disorientation if doing something driving at speed over twists and bumps; a limited tolerance to working at a computer (i.e. i can do a couple of hours, then need a break - couldn’t pull an all-nighter); during most normal activities i don’t notice or forget i have MAV; most sporting activities currently not limited by condition at time of activity (although there’s a chance it could set me off afterwards) but i haven’t tried anything as extreme as skiing/snowboarding, but i hope to do so either this winter or next (bright white snow, plus twists and turns etc could be interesting :stuck_out_tongue_winking_eye::crazy_face:)
on a bad day:
very tired, fuzzy head, inability to concentrate; slight visual/spatial disorientation when walking outside, but not enough to stop me going somewhere; lack of “get up and go”; more disorientation and a lot of tiredness when driving long distance (i.e. not a good idea); mild tinnitus; sometimes headache; dark rings around eyes; very occasional bit of nausea; however, even on bad days i am generally reasonably functional, although certainly not at my best, i am writing a book at the moment and i am able to do at least some work on it even on bad days, so mentally, i am getting more and more functional.

ratio of good v bad days
at the moment i will typically have 1-2 “good” weeks followed by 1-2 “bad” weeks. although it’s not that regular a pattern, it does seem to go in runs of good days or bad days.

i have noticed that i can do about 1-2 hours on a computer screen, and then i start to feel affected by it. so i’m trying to take regular breaks from screen work, get up and go outside, have a walk around, every 30 minutes or so. a bit disruptive, but it seems to keep a lid on things.

So
Dr S thinks i need to keep pushing up with the medicine to “mop up the last bits” and to “help the brain heal”. i will work up the doses and keep y’all posted as to how i get on.

keep getting better everybody…!


#35

That sounds really positive. How do you feel about adding so much gabapentin on top of the pizotifen?


#36

Always love reading ur personal diaries @gidlabu find it so helpful to see where I should be at ect .

I def get good weeks and bad weeks for no rhyme or reason. Just upped my dose to 2mg so will see what happens .

I’m so happy to hear how well your doing especially as we’ve had such similar symtoms . If I could just get rid of the visual issues when being outside and in busy places I’ll be a lot more functional :slight_smile:

Only time will tell … hope you have an amazing holiday :grimacing::blush:


#37

Greetings, Earthlings!

right, so i’m now on Pizotifen 2.5mg (still) and 1200mg Gabapentin daily (3x400mg).

upping the dose on gabapentin made me feel a bit sleepy and weird for a few days each time, but i seem to have got through that now.

how am i feeling?

Ok. i would say most days i’m 85%+ with only a few days here and there where i have noticeable ‘symptoms’. which is great. that said, there is a background “stoned” :crazy_face: kid of feeling all the time, which i’m sure is due to the combined meds. but i’m used to it, and it doesn’t really hold me back from very much. i’m not flying aeroplanes, and i need to be a bit careful not to get sleepy on long drives, and occasionally i have (worse than usual) quick recall problems, such as remembering a friend’s kid’s name, but generally i’m doing well.

i’m able to work at a laptop most of the day now with only mild side effects (after a while, the screen might get a bit “jumpy”, or i might feel a bit heavy-headed when i get up to do something else). i can drive, ride a bike, swim, go on holiday, work, etc etc and seem to be slowly slowly getting much better. :blush: touch wood. :roll_eyes:

my advice to anybody who has this horrible condition is do the meds (and if they really don’t work, try something else), do the lifestyle and diet recommendations, try to chill out, prepare for the long haul, and there’s a great chance that eventually you’ll get better. and in the meantime, try to find things you can do and enjoy and challenge yourself with that don’t make your symptoms worse, so you don’t get depressed while waiting for the brain to heal.

i’m writing a book (not about this!) to keep the grey matter functioning… :face_with_monocle:

pretty soon, if things keep going in the right direction :pray:, i’ll be posting my story in “Success Stories”. even though i’m not completely better yet, and still on the meds, i’m so much better than i was, and have been for a sustained long time, that i hope it will give hope to other people who are suffering from this crummy condition. i know looking at those gave me a lot of hope and positivity when i was at my worst, 18 months ago.

i haven’t been on the site much recently, but do feel free to ask questions; i will get back to you (eventually!)

keep on MAVing!


#38

That’s great news @gidlabu it’s so good to see when things are going in the right direction for ppl on here. I’ve been on pizotifen for 7 weeks now! Trying to stay positive and stick to it but I feel as if it’s exasperated head pressure and wobbly feeling a bit more! How long would you say until you noticed improvement on pitz? And did you feel drunk/dreamlike initially?


#39

Hello folks

Well just a quick update to say I have managed a few days of snowboarding in the Alps - yay! Despite red wine, cheese, chocolate, late nights, blinding sunlight and snowy whiteouts I have been more or less 100% this week :sunglasses::grin::crazy_face:

My only symptom was on day 1 some yellow/orange spots when looking at the snow when everything was white - but this went away with goggles/sunglasses.

This is a great test because snowboarding requires a lot more balance, head turning, going backwards, making tight turns, spinning etc than skiing, so if I can do this I can do almost anything.

Of course my confidence was low to start with and I was scared I wouldn’t be able to do it - it is a long time since I last got on a board - but I did it, and it was fine.

I’m very happy about this.

I feel much better than at home, and I wonder if this is because I’ve been doing almost zero screen time and have been out all day, adrenaline etc…

Anyway, recovery is possible!

I am sure I will have bad patches again but two years ago I thought I’d never ever be able to do this stuff again.

Yay!

I hope this gives some hope to others :pray:t3:


#40

Absolutely awesome, thank you for posting!! Enjoy!!!