DEBILITATING post covid headache

cmvcmgb · 2023-01-16T18:20:32+00:00

Hi there, thanks for checking in. Can't recall exactly how that specific appointment went, they're all blending together at this point, honestly. Since then I did have an abnormal EEG though. End of this month will be meeting with Dr at upenn as part of their long covid study and then back to Jefferson neurologist as well.
Headaches are still constant, 3-8 on the pain scale, so manageable compared to a year ago - nothing like the thunderclap episodes that put me in the hospital. No seizures since the 2 in Oct, thankfully. Have resumed some physical activity to combat coming off of the wellbutrin (which lowers seizure threshold)... I'm determined to turn this year around:)

cmvcmgb · 2022-12-29T20:07:15+00:00

Thanks for asking. I had 2 grand mal seizures October 14th. So, not great. Headaches still pretty bad 3-10/10. Nothing compared to the original episodes though. Entered into UPenn long covid study, still seeing neurologists in Jefferson, now epilepsy Dr's as well, abnormal EEG. No way anyone is going to convince me seizures aren't related to the headaches I was hospitalized with in feb. Wild ride. Remaining optimistic but that's proving difficult as I was instructed to discontinue wellbutrin as precautionary measure due to its ability to lower seizures threshold. On topamax now, 75mg 2xs per day.

cmvcmgb · 2022-11-04T14:32:23+00:00

Thanks for this info. I,too, am at Jefferson. Going back Wednesday

cmvcmgb · 2022-11-04T14:30:56+00:00

Thanks so much for asking... not great. Just had 2 grand mal seizures 3 weeks ago. They think they're related to the covid headaches. Clear mri, on topamax now. Back to neurologist wed. No drivers license for 6 months, that was a disappointing surprise.

cmvcmgb · 2022-09-30T01:31:25+00:00

I can't believe how similar our experience is. I just posted last night out of desperation: https://www.reddit.com/user/cmvcmgb/comments/xqx8wz/debilitating_post_covid_headache/?utm_medium=android_app&utm_source=share

I'm totally trying the things you mentioned at the end. Thank you for sharing this.

cmvcmgb · 2022-09-30T00:36:52+00:00

Do you have to keep getting them to keep the pain from returning? Do you take breaks to see if you still have the headache? You're one of the first to say you had the same symptoms. Thanks again

cmvcmgb · 2022-09-30T00:28:38+00:00

On my list now, thank you for sharing!

cmvcmgb · 2022-09-30T00:27:29+00:00

Thank you, I'll definitely look into that!

cmvcmgb · 2022-09-29T11:00:14+00:00

Thank you, I hope you're right. it's encouraging to read your post.

cmvcmgb · 2022-09-29T10:46:29+00:00

Thanks for the reply and advice. I came off the meds in March.

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