When I became pregnant a year ago I was very frightened about how it would affect my migraine associated vestibular disorder, so I thought it would be useful to share my experience.
Firstly a little about me. I am 35 years old and my symptoms started when I was 19.
My symptoms are dizziness, pulsating left temple, ear fullness, tinnitus, fatigue, thirst, slurred speech, neck pain and stiffness and sensitivity to light.
My diagnosis was from Dr Suren approximately 10 years ago who I regularly had telephone appointments with until his research centre in Kent was closed.
I take 50mgof nortriptyline and 50mg of topirimate daily.
My triggers are feeling stressed and or emotional, tiredness, thirst, breathlessness from exercise and eating too much sugar!
I found out I was pregnant in April 2022 and this was the biggest shock of my life because I had the copper coil for 4 years and it had vanished! I have no idea how or why this happened. I had 3 different scan appointments to look for it but It was long gone.
I was thrilled to be pregnant even though this was not in our plans, but was terrified because of the medication I was taking. I was advised to come off topirimate as quickly as possible due to the heightened risk of baby being born with cleft lip/ pallet. I weaned myself off in 3 days and really felt quite unwell doing this so quickly but my baby is more important.
The first trimester I had headaches every day from midday to going to bed at night. No paracetamol could touch this headache it was pretty awful. My usual symptoms were all causing me havoc.
Then came the joyous second trimester. I felt amazing. My muscles had started to relax and no more neck stiffness. This was wonderful because my neck is dreadful. I still felt slightly dizzy every day which is normal for me but all other symptoms had gone. It was absolutely lovely after having this dreadful disorder for half my life. There was also no signs in my scans that baby had a cleft lip, I had been feeling so worried about this.
The third trimester I was a little wobbly with dizziness but that could also be down to my balance being off centre due to this huge bump I was carrying.
I made the decision with my midwife that a c section delivery would be the safest option for me. Stress and change in breathing is a trigger and I didn’t want to feel horrendous for the first few days of my baby’s life.
My c section was scheduled for 2nd December 1 week before my due date. On 19th November at 2pm my waters broke whilst out shopping.
I went into hospital to have my c section which never happened (completely separate story) and I gave birth drug free just after midnight.
Considering I had zero to eat or drink for 12 hours (as they were meant to be giving me a c section), I surprisingly felt ok. My partner rushed to get me a drink and a couple of hours later I was finally given some toast.
I was shocked at how okay I felt. I had been hungry and thirsty, breathless and of course tired but I was in absolute bliss with my beautiful baby girl.
We were monitored for 24 hours and my baby had no signs of withdrawal from nortriptyline I was taking so we were then allowed home.
I opted to breastfeed and my GP advised against taking topirimate so I have continued with just nortriptyline. I felt great until the end of month 3 when my neck began to stiffen and all other symptoms started to creep back.
My baby is now 4 months old and I am sad to say everything is back with a vengeance and I am desperately trying to go as long as possible breastfeeding until I need to go back of topirimate. I am coping for my girl because I have to, but it was absolute bliss to have the disorder almost vanish for 9 months!
This is the first time my partner of 4 years has experienced me with full blown symptoms. The mix of nortriptyline and topirimate make me 75% better which is all he has ever experienced me as, so he is finding it difficult with me not being ‘myself.’
I hope this helps anyone that is looking to get pregnant or is pregnant.