Topirimate & planning for pregnancy experiences

[laura76191]

Hi everyone am new to the forum

I have had hemiplegic migraines since I was 6 years old with no break and now I am 29 years old.

I have tried various medications over the years, from recent memory-triptans, beta blockers and topirimate.

Topirimate is the only medicine that has drastically reduced my attacks without aura and major paralysis. Without it I used to have approx 3-5 migraines with paralysis a week, but now I am wanting to plan for a pregnancy and will need to come off it due to the potential side effects.

My GP doesn't know how to come off it, so I am waiting to hear back from them at the moment. They suggested when pregnant I take a paracetamol during an attack.. Which suggests to me they don't fully understand what a hemiplegic migraine is.. As without topirimate I lose the ability to walk or speak, alongside the blindness and throwing up and headache (if you can even call a migraine that!)

I am also struggling with low folate and have a b12 deficiency causing permenant numbness. I have read that topirimate can cause depleted folate levels but they won't prescribe me an elevated dose, they are just telling me to take the over the counter tablets which I have been doing and still previously tested at low levels.

I just wanted to know if anyone had any experiences of coming off, how long it took specifically for pregnancy and if they had any recommendations for supplements or migraine medication that worked for them?

Obviously I will still wait for the GP to get back to me but I always like to hear other people's experiences.

[Cat00]

I don't have hemiplagic migraine just chronic migraine with vomitting. I've had to come off all my meds twice to conceive, carry and breastfeed both my kids. I was having botox, Amitrityline and Gabapentin so I had to wean very slowly. I have in the past been on Topirimate but I wasn't on it for more than 6 months bc it didn't do anything, I don't remember having any particular difficulty coming off, but of course if it wasn't helping then withdrawal be easier.

With both pregnancies I had to go back on Amitriptyline after the first trimester bc I stopped sleeping. And with both pregnancies I was made to stop breastfeeding bc my migraines go so bad they had to restart treatment.

In my first pregnancies you weren't allowed to take triptans when pregnant or breastfeeding, by my second pregnancy you could take them while breast feeding, I think now you might be able to take them while pregnant.

Is there not a neurologist that can advice the GP for you?

[laura76191 in reply to Cat00]

Hi thank you for your detailed reply I really appreciate it Yes I asked them to check so they said they will write to them. I am still supposed to be the care of one but with Covid delays I haven't had an appointment/phonecall this year. I have tried stopping it before myself and tbh the migraines have just come back full force within a couple of days, I just have no idea how long it stays in your system for as there is a small chance of birth defects if you conceive whilst still on it. So whilst they said I'm sure a couple of weeks will be fine, I said I would rather wait and be 100% sure rather than risk it. I am just slightly nervous about pregnancy as my mother's migraines increased, so hopefully they will be able to suggest something. Thank you again though

[Francesca21 in reply to laura76191]

Be aware, in advance, if you are on any drugs during the pregnancy, as require them you may have to stay in hospital longer when baby is born and monitored for signs of withdrawal.xx

[Cat00 in reply to laura76191]

Yeah my migraines got worse during both my pregnancies but given i had to come off all my meds it was to be expected. It is why I didn't have my first child til I was 37, we kept hoping my migraines would improve but every year they just got worse so we just had to bite the bullet really. I love having my kids but I did not enjoy pregnancy, its just something I had to get through to have a family. I was given morphine for the first pregnancy but it doesn't work on me so I just gave them it back, if I had stayed on it the newborn would have to have been weaned off it after birth. I hope if you are having hemiplagic migraines while heavily pregnant there can be someone there for you when you're having paralysis, very dangerous falling over while that pregnant. It is realistic that you will need more care than the average pregnant lady esp. if your migraines are stay severe.

[Francesca21]

I dont have experience of the drugs u mention or your type of migraine, but i did have horrendous migraines and headaches in my pregnancies a long time ago. Now have chronic permanent migraine which up to now, nothing touches. Im replying to you because i have an appointment with prof anne Macgregor in October. She was on a docu on channel 5 a wk ago explaining how the body dosnt mind low levels of hormones or high levels , what it hates is fluctuating levels. She has prescribed hormones for an older lady on here who contacted me to suggest i give her a try. Its not cheap but when we have horrendous pain we pay anything to be sorted? As pregnancy is a hormonal roller coaster i feel she may well be able to give u the advice you need or a good gynaecologist or endocrinologist? Only suggestions and I hope you get throu it with minimum of disruption and get to hold that precious baby in your arms. Good Luck xx

[laura76191 in reply to Francesca21]

Hi thank you for the advice I really appreciate it Yes I need to finish watching the documentary, I actually have IBS as well so I have watched the first one! I started watching it post a horrendous migraine the other day and it was too soon for me, so I need to finish it! But yes I had a feeling hormones would probably be too blame, so that is good advice. I would like to be on as least medication as possible, but I have asthma and have been struggling with low folate, b12 and iron anaemia this past couple of years. So trying to get it all in a stable place before I try and conceive, but it seems to be a never ending battle and I have to keep delaying. But I am going to have another set of blood tests again before trying so fingers crossed.

[Cavapoochonowner]

Hello, I have had migraines since I was 14.Most of them with aura and severe vomiting.Nearly 30 years ago when I was pregnant for the first time migraine medication was different.As far as I can remember I wasn't offered a preventative.Obviously I couldn't take any treatment while I was pregnant or breastfeeding.My first 2 pregnancies I had a spell in the middle when they were frequent but with my third I had no migraines during pregnancy but had them after when I was breastfeeding.It seems to agree with the recent documentary regarding fluctuations of hormones.They came with avengance during perimenopause and menopause then went away for a while. Unfortunately I now have graves disease which messes with your thyroid(another hormone)and they are back again.This time I'm taking 3x 10mg proprananol a day which seems to be working. I was on 20mg amitriptyline per day but that has stopped working.Im slowly weaning myself off it .I'm down to 10mg a day I've done it over about a month with no problems but obviously I'm taking the proprananol now.I'll start cutting my tablets in 2 soon and take that for about a month to 6 weeks. And so on.There might be something you can continue in pregnancy I don't know.I know I was glad to finally stop breast feeding so I could take stronger medication again.Sorry I couldn't bring a more positive story.

[BitBrokenBrain]

Fellow hemiplegic migraine sufferer here- I didn’t come off of Topamax for pregnancy, but was weaned down slowly when I had to come off (it was making my migraines much worse and more frequent). It took about a week if I remember right, and I was at the max dosage. My doc had me take fewer pills, decreasing every other day. It took quite a while for it to leave my system after stopping. Hoping that like me, you have fewer migraines during pregnancy! They weren’t any less painful, but I definitely went longer between them, which helped. Do you have B12 injections for your deficiency? I have pernicious anemia and it’s the only way to keep my numbers up. I lost a couple of pregnancies because of it (before my diagnosis) and really wish that someone would have figured it out sooner. Wishing you the very best!!