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I Developed Complex Migraines 2 Yrs After My First Seizure (40 Yrs Of Regular Migraines). Could That Be Connected?

A MyEpilepsyTeam Member asked a question 💭
Jackson, TN
July 5
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A MyEpilepsyTeam Member

I developed chronic migraines a few days after left temporal lobe removal as it was anticipated risk this could happen due to part of the scar being taken with it. Surgery took place in 1995 and have had migraines since that time. We're doing our very best to control them with Botox and Ajovy.

July 8
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member,

My very first migraine that I remember was in 2017. Two years before my very first seizure. It was so bad it actually knocked me out in the kitchen where I was at in my apartment. Luckily I was sharing my apartment with some friends and we had invited some other friends over for a visit. As I was saying, I collapsed in the kitchen. I literally blacked out. I can’t tell you how bad the pain was because I did black out. In September 2019 started having seizures a migraine after seizure, it didn’t matter how big or small seizure. My seizures have changed consistently over the years. Started off as focal impaired to generalized tonic clonic seizures and now I have more of the generalized absent seizures and once in a while of focal, impaired seizure. I still have migraines. The neurologist, I was seeing last put me on “Qulipta” after having tried two other meds. One of them was rizetriptan, it was a tablet that would melt on top of my tongue, but I was only allowed to take up to a total of five doses (double dose) of those per month.
Since I’m hypersensitive to medication, I would only take one pill we needed. My migraines would be increased after I took. medication. So he took me off of that because I was too sensitive and the medicine was too strong.
Then put me on another one. I can’t remember the name of it and it did the same thing. He decided to put me on. Qulipta which is a preventative for migraines and he started me off at 60 mg per day. It was too strong. I slowly backed off of it till I got down to where it would actually help. Due to my seizure medication that I take it can cause the migraine medicine not to work correctly. Instead of 60 mg per day I take 20 mg per day. It is a very expensive medication. It is only recommended by my insurance because I’ve had previous medication’s.. I no longer have that neurologist. It’s complicated and don’t feel like going into details.
The point is is that there are options out there, but you need to talk to your neurologist about it. Each person responds differently to meds. What works for me may not work for you.
Whenever you have issues with migraines, seizures, anxiety, or anything else; always talk to your physician about it. Whether it be your PCP or your neurologist or even your Epileptologist. I recommend talking to everybody that is part of your medical team. Hopefully they are talking to each other so that they can help improve the quality of your health.

July 7 (edited)
A MyEpilepsyTeam Member

Thanks Tina. Looks like it’s all interconnected and diffetent with everyone. Not much time for questions with neuro he is so rushed and no one else to get info from. That’s why I appreciate all of you so much!

July 7
A MyEpilepsyTeam Member

It's I try to keep my body I have in good order as for what I do and take care of it, It's gone through quite a bit but I try and hang in there and try and stay pos, my opinion

July 5
A MyEpilepsyTeam Member

Wow Dave! So you actually have fewer migraines instead of more, or worse. Hmmmmm, very interesting!

July 5

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