Barely functioning on pitzotifen!

Hi everyone. So I am back at work today and its’s been 2 weeks on pitzotifen and 5 days on 1mg (went up from 0.5mg) I can seriously barely function. My legs feel like weights trying to walk. I’m in a drugged up haze feeling and can’t concentrate (as I’m so sleepy and groggy.) I still feel off balance and dizzy. Can anyone pls chime in that has taken this. Does it get easier and is two weeks too quick to judge its effectivness?? Thanks in advance.

2 weeks is still early. Granot says u need to be on 1.5mg for a couple of weeks before u can start noticing any improvement (if the med s going to work).by that time u will see him so he shud b able to guide u properly. Good luck and hang in there. It will get better once u find the suitable med

AG, those sound like very rough side effects to be honest. You’ve come this far, however. Hang in there until you see Granot this week(??) and take his recommendation.

I know it’s a different med but I was like this for 3-4 weeks in varying degrees when I started taking beta blockers

Hi Aussie girl. I too on pizotifen. 4 weeks its been. Went up to 1 mg a week ago and must say I have gone worse with dizzy and balance. First few days couldn’t function with woozy feeling but that has wore off now. Will stick it out bit longer and get to 1.5 and then see what happens. I an still hoping this will work. I wonder did anyone get benefits from this as late as 4 weeks plus on. Hang in there Aussie girl I an right behind you. Angela

Hi Aussie Girl

I was on Sandomigran for 6 weeks and also struggled badly with fatigue. It totally and utterly wiped me out. Dr Granot had hoped that I would get to 1.5mg daily, that’s three tablets a day. There was no way that I could get to that dosage. That fatigue just didn’t subside as I had hoped. A lot of people on this forum found that the tiredness did disappear over time, but that was just not the case for me. Maybe give it another few weeks. I know that is going to be a challenge for you given that you have to be functional at work. The dizziness is enough to deal with but the fatigue just makes everything unbearable. I really hope things settle down for you. I am also going through the trials and tribulations of a new medication… it is so tough! All the best.

Kylie

Thanks all. It’s a battle isn’t it! You get excited that there may actually be something that helps but then it makes you feel worse and leaves you guessing if you should keep going or face the disappointment that the tablet wasn’t “the one.” I appreciate all of your support. It often feels like you are the only one in the world going through this madness…until you jump on this site. I am going to stay on 1mg until I see Dr Granot next Tuesday. I also see Dr Cremer on Monday - I will report back here on it all, including pitzotifen and expected time frames etc. Ps: I am SUPER hungry on these pills! I better not pile on the kilos…I suddenly have a shortbread addiction that’s getting serious lol .Although I’d be any shape or size if it meant getting better ! We are all in this together…I hope we all find relief soon :slight_smile:

yeah, piz made me feel pretty peckish all the time…padlocks on the fridge etc etc :lol:

AG

plz do let us know your experiences with both the docs

I think I had the constitution of an Ox as I hardly get side effects from these meds I honestly don’t know if thats good or bad actually.
Ive been on pitzotifen 3 weeks at 1mg hasnt made me worse Ive improved loads on it but sometimes hard to know if its just the passage of time since I gave birth? X

That’s great that you’re getting better Donna. Are you nearly back to yourself pre-relapse now? Are you still going to the neuro on 28th? I hope you have a nice xmas to make up for the rubbish second half of this year xx

Hi Jem
No Im not back to where I was I would say im 75% at the moment I was 90% before but can go out and do things again within reason. I had a really good day yesterday and did so much shopping and cleaning etc but paid a lot today woke with spinning I knew it was because I had overdone it though so have taken it easier today. I have a really bad migraine tonight and my ears keep hissing Im due on again saturday so m steeling myself for a few rough days this weekend I think my period is affecting me more now than it used to as my body is getting used to them again maybe?
I hope to get back to 90% eventually I went to the pictures on friday dont know how I did it I was having an awful day that day but managed somehow think my hubby would of divorced me if I did not go as I hardly go out!
How are you? Im glad tobe improving but still wishing for more :slight_smile:

I feel very similar to what you describe Donna. I don’t know if I am at 75% yet but am doing more. I have been painting in our kitchen this week. It tires me out though - some days have been better than others. I went to the cinema last weekend too. I saw Skyfall and like you I didn’t feel good that day but went anyway and was ok except my neck was so tense afterwards. I know what you mean if I overdo it then I will pay for it. It’s weird how it seems to cause spinning isn’t it!

In the evenings I am just lying down resting on the sofa in front of the telly. As I get more tired I start thinking I am going more woozy then I worry I might be going worse. I sometimes wake in the night and dread getting any vertigo. Last night I woke up and thought I was going to faint and be sick. Never had that one before! I am so grateful for any improvement though. It was absolute hell a few months ago but I just live in fear of it going worse all the time x

just wrote a huge post and lost it testing

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Hi everyone. So I am back at work today and its’s been 2 weeks on pitzotifen and 5 days on 1mg (went up from 0.5mg) I can seriously barely function. My legs feel like weights trying to walk. I’m in a drugged up haze feeling and can’t concentrate (as I’m so sleepy and groggy.) I still feel off balance and dizzy. Can anyone pls chime in that has taken this. Does it get easier and is two weeks too quick to judge its effectivness?? Thanks in advance.

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I felt like this on Pizotifen and still do somedays now. It does get better and wear off mostly but I know what you’re saying with the sleepy-druggedup-haze and dead-weight legs. It’s horrible. It took me a few months to start seeing any relief on this drug, and still I’m not sure if that was just a natural flux or due to the pizotifen itself. I still had relapses on 1.5mg so am now on another drug to help together with pizo. I hope you feel better soon

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Thanks all. It’s a battle isn’t it! You get excited that there may actually be something that helps but then it makes you feel worse and leaves you guessing if you should keep going or face the disappointment that the tablet wasn’t “the one.” I appreciate all of your support. It often feels like you are the only one in the world going through this madness…until you jump on this site. I am going to stay on 1mg until I see Dr Granot next Tuesday. I also see Dr Cremer on Monday - I will report back here on it all, including pitzotifen and expected time frames etc. Ps: I am SUPER hungry on these pills! I better not pile on the kilos…I suddenly have a shortbread addiction that’s getting serious lol .Although I’d be any shape or size if it meant getting better ! We are all in this together…I hope we all find relief soon :slight_smile:

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Wow I agree with all of that! :smiley:

The pizo timeframe is usually 3months to start seeing positives. And, any stress I had set me straight back into another relapse… so obviously 1.5mg wasn’t and still isn’t a high enough dose for me. But I doubt I could cope with the side effects of a higher dose. Hence dual-drugging. Also my appetite has increased dramatically on pizo and gaba :frowning: I’m becoming a fatty

I’ve been told by my doctor that you have to give these drugs about 3 months to see the real affects. There’s no way you’d feel better instantly after 2 weeks - although some people are lucky.
I’ve been on ami for 4 weeks and only just getting to15mg - i’ve not had much improvement yet, although some days have been better than others…

Hi Blondie, i was told today that 20mg is the minimal optimal dose for ami - have you thought about increasing?