Hi! I was very shocked 2 weeks ago to discover I am pregnant!
I have had MAV for 16 years and have been fairly stable (dizzy but not terrible). I was taking Topiramate and Nortriptyline. I have quickly weaned myself off toprimate due to the heightened risk of cleft lip/pallette however I still take 50mg of nortriptyline.
I am 35 and 6 weeks pregnant and I am feeling dreadful with MAV 
I am feeling so dizzy, agitated and exhausted.
Does anybody that has been in a similar position have any advice? I am taking folic acid but is there anything else I can take to help MAV symptoms?
I do intend to stop nortriptyline but feel horrendous right now!
Congratulations! sorry you are feeling crook. Obviously you need to talk with your doctor about medication and supplementing but this information may be of interest. If you scroll down it does discuss meds a little.
https://www.nationalmigrainecentre.org.uk/migraine-and-headaches/migraine-and-headache-factsheets/migraine-in-pregnancy/
Your hormones are fluctuating a lot in the first trimester and that can often affect MAV. Fatigue, nausea and diziness are experienced by many women in the first few months, so maybe some of what you are experiencing isn’t just down to MAV getting worse. Also, coming off the Topomax quickly might have irritated your sensitive MAV brain.
When you get your first blood results back (after your booking appointment)you may find you need to supplement with iron (which can help with the fatigue). There is some evidence that Magnesium supplements may help with MAV and some studies that show it can be beneficial in guarding against pre eclampsia and pre term complications but again please discuss this with your doctor/midwife.
As for generic advice - rest as much as you can, pace yourself, put yourself under as little stress as possible at work and feeling you have to be take up social invites, eat nutrient dense foods, stay ultra well well hydrated.Be selfish - put yourself first.
Fingers crossed your MAV will improve during the pregnancy as it seems to for the majority of women with migraine and or MAV
Thank you so much for such kind advice I really appreciate it!
Congrats! I’m so sorry to hear you are so ill at the moment. If you dr Hain’s page he talks about how MAV remits in pregnancy and dr. Beh’s book talks about how second and third trimester usually are much better for MAV. Hoping that’s the case for you! I’m working on my MAV treatment right now and I was just wondering have you been having MAV chronically everyday for 16 years or episodically?
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Hi, Thad a notification on my email and wanted to give you my experience.
I’ve got a 6.5 month old baby girl now. Who is amazing and is worth everything with MAV. It is still here and it is draining and depressing at times but I’m just trying to keep faith that it’ll pass when my hormones level out (am still breastfeeding).
I had a pretty bad flare up in my first trimester which didn’t last too long. Maybe a week or two. I was still on my medication however so I’m sure you having to rapidly come off will take your brain a bit of equilibrium to come to terms with.
I was totally fine until I got sick in my 2nd trimester (illness is my biggest trigger) and then was ok again until I got sick again in my 3rd. I also think there was some weird hormonal stuff going on.
Postpartum MAV hasn’t been great, I’ll be honest, but I have had some days of being about 80% normal - I get daily symptoms but they are a lot worse in the afternoons. I also found out my ferritin was low ( but according to NHS normal, apparently anything below 100 can cause symptoms).
You will be okay. I know how horrible MAV is during pregnancy and how scary it feels. But it’ll settle. See it as confirmation hormones are a big trigger. I think breastfeeding is meant to be protective postpartum and I’ve seen a lot of people get worse when weaning. So far for me that’s not been the case - hopefully it stays that way. When I pumped more milk one day I felt a lot dizzier.
Best of luck
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Also. I would say stay in the nort if you are able. I think it’s best to keep some semblance of continuity with MAV.
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Thank you so much for your reply. It took me 8 years to get a diagnosis it was purely luck that i watched a tv programme and someone with similar symptoms was being seen by Doctor Suren.
I had it chronically for those 8 years where i’d spend weeks in bed. Practically had no life in my early 20s, was told by different doctors it was labyrinthitis or anxiety.
To be completely real with you I constantly feel like my head is swimming/I am stood on a boat so the symptoms have never actually left me ever. A bad episode for me is a throbbing temple, painful neck, tinnitus and the room spinning. I’m not sure if my answer to you was a bit depressing or not!
Thanks for your reply Becs its really kind of you. I was wondering whether labour was a big trigger for you? My mum brought it up last night (my biggest mav sympathiser in my life) and she said she was awake wondering if an elective c section was the route for me to go down?