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Pizotifen and Pregnancy

Hi all,

So - very very early stages but I have just found out I am pregnant. All very strange and wont be getting too excited until I have reached a few more weeks and officially missed my period.

Anyway

I am on Pizotifen 1.0mg. I cannot function without it, I have tried, Dr. S has said it is too early to come off and I agree. I am terrified of my mental health if I do come off, I cannot handle MAV on top of a pregnant body.

I feel incredibly selfish for saying this, I dont want to harm my baby and of course if it was clear that this would happen (e.g. like Topirimate) then I would stop and accept the consequences. I have seen on boards that some people have taken throughout pregnancy with no ill effects. Of course no one would test on pregnant women so the general advice is dont do it unless the pros outweigh the cons, in my experience I feel that the pros do outweigh the cons.

I dont know what to say to the Dr. I know Dr. S takes everyone off the meds, but I am so scared of getting my prescription axed. Does anyone have experience of a similar position to be in? Im so torn on what to do

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Congratulations @becs - how lovely to hear some good news. Difficult to make a decision about what to do about taking Pizotifen just now and throughout the rest of your pregnancy, especially as you clearly still need to take it. I think you definitely need to talk to Dr S initially to see what he thinks - the GP would probably be guided by him - hopefully!
Good luck with it and let us know how you get on.

Congratulations!! Yes, you must speak to Dr. S. Have you been pregnant before whilst dealing with MAV? For me, my symptoms luckily decreased when I was pregnant especially in the second trimester onwards. I still had some ear fullness and tinnitus and the usual pregnancy fatigue but headaches, spins, marshmallow floors etc all abated. Perhaps it was down to hormones, or taking things easier, eating better, no late nights and alcohol etc. or a combination.

This info states there have been no reported adverse effects with pizotifen and pregnancy and mentions amitriptyline as a safe preventative. Best of course to speak to Dr. S though.

Congratulations Bec. It’s so hard to know what to do. But I have heard of many people (including myself) totally improve with migraine whilst pregnant. I didn’t get one migraine in both pregnancies! I wonder if you could go off it, and then start taking it after feeding? Not sure. All the best with your pregnancy.

Many thanks all

I spoke with GP and he is happy for me to stay on Pitz, essentially saying the same thing as you all have. There is a risk essentially due to unknown, but they dont know of any adverse reactions. He agreed that the potential risks outweigh the benefits, so he wont stop prescribing. Even though I will probbaly wean off it is nice to not feel backed into a corner about it all. I am keeping everything crossed that it is a viable pregnancy of course, so lets hope.

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Update!

9 weeks in and MAV seems to have reared its ugly head - feeling so upset and disappointed. Will this illness take away all my enjoyment during such a special time? I am incredibly angry. People seem to say that it does get a little worse during first trimester, and then settles, but seems to come back with avengance after birth. It feels so incredibly unfair. Does anyone know why this is? Is it because the hormones fill up our jugs, or the jugs become smaller during pregnancy (as per Dr. S). The vertigo is different this time, it feels more like classic vertigo, the derealisation isnt actually that bad unless I am moving around so I am not AS BAD as when I first got sick. But I was so enjoying this pregnancy. They do say week 9 is when hormones peak so maybe it will get better after this. Help !

All down to the fluctuating hormones I’d guess. Doubt even the medics can be much more precise than that. Nobody knows the root cause of VM really. The theory is something causes Central Sensitisation and then we experience all the sensory fall out that produces. The brain gets ‘a bit hyper’ as the neurologist said to me when I walked into her consulting room on a dark wet winter day wearing a wide brimmed hat and two pairs dark glasses due to photophobia.

For me I am pretty sure the cause was Mold exposure/possible chronic Lyme. I definitely improved on a functional practioner protocol, which I can no longer take due to pregnancy. Hoping it will ease off soonish - if not I dont know what I shall do. There goes my dream of being a glowing happy pregnant lady. I also wasnt sticking to my diet AT ALL due to morning sickness. So Dairy, Gluten, Sugar (all of which feed mold as well as migraines). Meh

Ah was just about to suggest a functional doctor might have better idea of why and alternative suggestions but you are already there.

Sorry to hear that you are struggling with MAV at the moment - hopefully things will settle down soon. My pregnancies were in my pre MAV days, but I still remember the awful morning sickness that stayed with with me all day from week 6 to 12 - not sure I could have coped with MAV as well. Perhaps things will settle down for you too in a few weeks time - things are definitely at their worst in those first 3 months whilst our bodies and hormones adjust.

Thanks - guess i just have to wait and see - it has put a massive dampener on the whole process now. Especially as many say things are worse post baby. Some of this of course may be 1st trimester exhaustion and dizzies as well…am hoping

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Thank you for this thread. This is exactly why I like this forum.

Just thought I’d add a comment to this thread in case it may help, even a bit. I can’t speak from experience, but I did discuss pregnancy with my neurologist at my last appointment since I hope to become pregnant once more, and this would be my first pregnancy since my VM diagnosis. She said often times migraines (including vestibular) go away completely during pregnancy, but sometimes not until the second trimester because the first trimester can be like a rollercoaster with hormones.

Hope you’re feeling better and congratulations!

Many thanks. It has let up considerably now and thankfully only lasted a week. I also cut out gluten and dairy and refined sugar and that helped. Now I’ve just got pelvic girdle pain. Haha. Like whack a mole!

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How’s your pelvic pain? Are you taking any meds?