Hi all. So I finally have my specialist apt this friday and I think he will start MAV medication. The problem is my husband and I want to start a family. I am absolutely petrified to get pregnant after reading all the horror stories. Esp since my worst attacks now happen in line with my period. I’m terrified of being in hospital and getting the worst vertigo ev er. Its like my greatest fear. But I also don’t want this thing to take away the gift of children (its already taken so much.) My question is; has anyone been on migraine preventatives while pregnant or trying to get pregnant? Has anyone had it help them and got through it ok?? Thanks more than I can say!!

Hi Aussie
If you have seen any of my posts you will see Ive just gone through this but I MUST stress I was fine during pregnancy till the last few weeks and after was and still is bad but I got through it and so would you but everyone is different you could sail through the whole thing from start to finish. I stayed on amitriptyline throughout it but only 10mg x

Hi Aussiegirl,
I improved during pregnancy, which was great. I switched from taking Prothiaden to 4mg of Periactin during pregnancy, my obstetrician was happy for me to be on that. I’m also worse around my period, but that had no correlation with being pregnant for me. Three weeks after the baby arrived my symptoms picked up again (I blame lack of sleep), but I started back on my medication (now on Prothiaden and Topamax) and things settled down again. There is no guarantee that you won’t get worse during pregnancy, but there is nothing as wonderful as the sweetness and joy of holding your own baby, so don’t let the MAV monster take that joy away from you:)

Thank you both so much. It is nice to hear others that made it through. We really want to try for a baby next year but it’s so scary. I feel like a burden already. I just hope I can cope. You are right though, I don’t want to let MAV win! It helps a lot to have people to talk to as well. It’s hard to explain to other friends having babies. I wish all I had to worry about was morning sickness (as awful as that can be I’m sure.) I am hoping when I try meds I may find some relief and maybe it will help me through. Really appreciate it girls x

Reading your post was like reading my thoughts 2 weeks ago! On the 9th of november i went to hospital to have a planned c-section to deliver my twin girls which were both breech. I was absolutely petrified, not of the c-section (though that did scare me too) but of how i would be on all the drugs etc and drop in hormones post birth, i cried the days before going and dreaded waking with vertigo in the middle of a strange hospital with two babies to care for.

Well, i don’t want to talk to soon, i am still scared as i am still only 2 weeks post partum tomorrow BUT so far my symptoms have not been any worse. They are still the same as before which was bad enough but i am able to cope with how i am at the moment.
The surgery did not seem to affect my symptoms at all and each day after i was dizzy but like i say, not any worse.
My pregnancy was also pretty much the same symptoms wise, the first tri was possibly slightly worse but i had severe morning sickness which didn’t help and the last few weeks were also slightly worse but my body was struggling carrying twins at that point so not sure if it just made things worse, other than that the dizziness was the same, again no better though.

Anyway what i am trying to say is that some people do get worse after birth or during pregnancy and some get better, then there are others that just stay the same like me. i personally was not prepared to miss out on pregnancy because of this condition but i realise it’s a personal choice and everyones MAV varies in intensity. Good luck for the future x

I agree dont let this illness take your dreams of a child away. Unlike Dee m symptoms were a millon times better whilst pregnant from 18-36 weeks to the point I forgot I had MAV and was magically cured I think for me it signified a huge hormone aspect to mine as hormones are stable at thos weeks of pregnancy and must be why I was loads better and post partum was way worse!
Would love to go back to thosee weeks of pregnancy actually :smiley:

Thank you Aussiegirl for starting this thread… It’s something I’ve had in the back of my mind too and really interesting to read all the girl’s responses.

I felt great during pregnancy and delivery, but just going off the birth control pill itself helped me a lot (I believe the pill is what started MAV for me). I did have a bit of a crash a few weeks postpartum, but it didn’t last too long. The nice thing about newborns is that you can just lay around the house with them if you are feeling bad. It’s when they become toddlers and you have bad days that it gets a little harder!

Some people get better in pregnancy, some get worse, some stay the same…there are no guarantees. However, once you hold that sweet baby in your arms, nothing else matters. My son is the most amazing little guy, and I am so glad that I didn’t let my fears get in the way of becoming a mother. MAV has taken way too much from my life, but not that dream.

i’ve had mav since i was a child and always wanted to have kids. i got dizzier a few times but i think it was the “normal” dizziness" lol. It was the aftermath that changed my life. i was SUPER sick with nausea with both. I had 2 c-sections. Baby #1, woke up with the worst vertigo after delivery, had it for about 2 days, I couldn’t even go and see my baby in the NICU I was spinning so fast. I blamed it on the epidural and/or the pain meds. It slowly faded and returned to normal. Baby #2, I avoided the pain meds, had a spinal instead of an epidural, was fine for 2 days and then woke up with that herrendous vertigo again! Threw up, had 2 doctors come in and did not know what was wrong. I now have been diagnosed with MAV and Mdds. I am not sure what happened, but thinking it was my hormones or a spinal leak after learning about what they are doing at Duke. Who knows? I am still debating on if I should have another child because I have always wanted a big family and I hate that I have to worry about this. I say go for it, you might just be fine! Just have a strong support system around you!

Thanks everyone! It looks like it’s one of those things. If you want it… You just have to do it and find a way to get through it. I am going to talk to dr Granot about it and see if a management plan could be put in place and if he has ever found things to help. I’ll report back here. The challenges of being female huh! Wish we could be the men cheering on the sideline lol. All of your experiences really helped. Xx

Hey everyone, I just want to say a big thank you for your posts.
Ive had MAV for just over 3yrs now and have been stressing over whether or not to go for it and add a new addition to the family.
My symptoms seem to have got more under control at the moment since the stresses of arranging a wedding stopped back in august.
Im currently taking 100mg Nortriptyline and 300mg Gabapentin daily. I was on just 120mgs Nor but was told these 2 meds work well together and i was able to drop the dose of nortriptyline. Before reading this, i was told, i think by my neurologist, that it’s known to disappear when pregnant but come back full on afterwards. I get what you’re saying about not letting MAV rule and to take a chance. Thank you :blush:

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@helsbels80 I just found out I’m pregnant, with my first baby. I’m still in the process of finding out if i have MAV or just vestibular neuritis/labrynthitis. If interested, I’ll let you know how it goes. I sti have plenty of symptoms, but I’m hopeful everything will be ok.

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Be interested which they decide, how and why because I have MAV but I’ve a friend who had labs. 5 years ago, and who gets many similiar symptoms to alot of MAVers, and I wonder … VN/Labs isn’t supposed to recurr although it can obviously leave plp with various balance issues. My friend often speaks of ‘sinus’ headaches which make her dizzy, marshmallow’ floors, feeling ‘like grass blowing in the wind’, has trouble balancing out in strong winds, gets light sensitivity, has had to lie down on supermarket floors before now as the lights made her so dizzy, waking up having dreamt she had vertigo to find it’s a reality, gets a little vertigo doing repetitive tasks - she’s heavily into sewing handicrafts, recently accompanied by nausea … sounds familiar, but then guess all vestibular conditions affect the same body parts so symptoms bound to be similar. How do they differentiate. Oh, and there’s migraine in the family too.

Very interested to hear what they decide you have, apart from the baby that’s on the way, of course. Helen

Hi SolarVivi.
I hope all went well with your pregnancy.
I’d be interested to know how it all went.
Did uou get your diagnosis and how did it all go through your pregnancy and afterwards?

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