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Sharing my story

Hi All- I have visited this site on and off over the last 2.5 years and felt it might be time to share my experience.

I never really had any migraine history but was able to piece together a history of some silent migraine activity which my neurologist felt was probably accurate. I have never been a coffee drinker (unless decaf) because I always thought it gave me “anxiety.” In reality, hours after drinking coffee I would feel funny, felt neurological. Kinda like I was having a stroke without loosing function and my tongue and swallowing would feel like I had to focus to make it work. Years later I went off the pill to start trying for a baby with my husband at 30 years old. Around ovulation I started having this same thing happen. Whether by caffeine or ovulation it would clear up in a few minutes.

In July 2017 I had one of those episodes on a Sunday night and it cleared after a few minutes. Actually was the night we celebrated our one year anniversary of marriage and it happened in the middle of dinner. On Wednesday that week I woke up and felt unsteady. I could still do what I needed to but I felt foggy, unsteady, and anxious as sh*t. My primary said oh probably just anxiety. It wouldn’t go away 24/7. I kept testing negative for pregnancy. I had a panic attack over this and went to the ER had a CT scan and blood work and was told it was anxiety and that they were certain I was NOT pregnant. A few days later I tested positive. I was like ok great I’m just one of those dizzy pregnant women but why all the time? Why do my eyes feel pressure? Why are colors less bright and I feel like I’m balancing on ice? Also I was so light sensitive.Then I was labeled “pregnant and anxious” told to drink more water. Weirdly, sometimes I would be sitting there and feel a shift of pressure in my head and all of a sudden my symptoms would dramatically disappear. Feeling normal was amazing but usually short lived for a few hours. That lifting didn’t happen daily or even weekly but it did happen a few times. Over the course of first tri my symptoms slowly improved. I think around 20 weeks all the symptoms slowly left and the unsteadiness was last to go but did. I thought well thank god that’s done.

I gave birth to a boy on 3/22/18. My first 6 weeks were amazing I loved every minute and felt really good and just was basking in it. I woke up on the dot 6 weeks postpartum and all those gross symptoms were back. I went back to the dr and she said was having postpartum anxiety mixed with hormones. Blood work was normal. I even gave up breastfeeding which still cuts me like a knife because I was desperate to not feel whatever this was and was told when I got my cycle back it would prob go away. I waited all summer and on my first day at work after leave I had a dizzy spell. Then after a few days I noticed my symptoms eased some. Then they went away and yep I got my first “cycle back.” 4 days into that everything came back.

6 months later I finally on my own went to a ENT around me in Connecticut. He was so kind and did the appropriate tests but said it was VM. He had me do the diet magnesium and b2. Everything slowly went away over a month but came back again one month later. Since then diet and vitamins haven’t helped. I have tried only a few preventatives. Nortriptyline didn’t do anything, verapamil I couldn’t breathe on. I tried it again at a much lower dose and it made my joints swell. I stopped it after 2 weeks and I woke up every morning for 6 months with mild swelling that would go away once up and moving. I still have no clue what that was about but we all decided verapamil does something to my sensitive body and my body doesn’t let go of reactions easily clearly. I was on Effexor for 4 months. No side effects and actually liked it. My dizziness actually became really light and my neuro said it was probably just kicking in when I got off. I wanted to find a med I could stay on if pregnant. I am on Amitriptyline 50 mg. I have been for a little over a year. It makes most days light but there are always upticks and fluctuations daily. My neurologist specializes in migraine but she also specializes in pregnancy management. I’m 30 weeks pregnant and didn’t get the remission I was hoping like last time but I did have a few days of feeling totally normal mixed in with incredibly light barely noticeable days from weeks 19-23. Well sorry that’s long it’s been a long 2.5 years and I hope after my next boy comes in 10 weeks I’ll be able to really make a bigger dent and have some crystal clear days :pray: hormones have been my only identifiable trigger :roll_eyes:

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