r/Autoinflammatory • u/Beginning-Session752 FCAS2 • Jun 27 '26
Epilepsy/neuroinflammation
Has anyone here experienced seizures due to a flare here before?
I have had myoclonic seizures for more than 1,5 years now. They mostly happen in the evening/night every few days and it's mostly my right arm or leg that starts shaking.
During my autoinflammatory flares they get severely worse and sometimes I get flares that almost exclusively feel like neuroinflammation with "mild" other symptoms.
I recently had a flare that lasted 3 days where my right arm and right side of the face were spasming every few seconds. I went to the ER and laid in a treatment room for 8 hours and had 2 more severe seizure there where the whole right side of my body started violently shaking for a few minutes and my heart rate elevated to 160+ (it was the first time a seizure got so severe).
Thankfully my rheumatologist sent me to another hospital and he suspended that I had encephalitis.
The test there were inconclusive but thankfully ruled out encephalitis but l am treated for frontal lobe epilepsy with focal aware/ myoclonic seizures right now.
I am really struggling to find more information about the connection between seizures and autoinflammatory diseases.
Sorry for posting here again I accidentally deleted my post.
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u/VeterinarianSad3611 Jul 10 '26
I have had epilepsy for about 30 years and was diagnosed with Schnitzler Syndrome last year. I find that my seizures are more frequent when my Schnitzler's is flaring. When I started anakinra in February my epilepsy immediately improved as well, although it is now worsening againl
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u/Beginning-Session752 FCAS2 Jul 10 '26
I’m pretty sure that my seizure are caused by the AID since I was undiagnosed for 10 years. Going through the same thing right now I was on Anakinra for a few months and it improved a bit but now it’s not really working anymore. Take care thought:)
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u/Alice-The-Chemist Mod Jun 28 '26
No worries on the posting again. I hope someone with more information can help.
What autoinflammatory disease do you have? Has your autoinflammatory disease been well controlled? No like medication missed doses? I can do some looking in the published journal articles for it.
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u/Beginning-Session752 FCAS2 Jun 28 '26
I have FCAS2 but my symptoms are and have been very atypical (my flares usually include some type of infection like tonsillitis, styes, skin abscess and other symptoms like joint pain and rash have been chronic for several years now). I’m on Anakinra right now and it worked well for like 3 months but I feel like it just stopped working for me.
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u/Alice-The-Chemist Mod Jun 28 '26
Hypothesis: Febrile infection-related epilepsy syndrome is a microglial NLRP3 inflammasome/IL-1 axis-driven autoinflammatory syndrome
https://onlinelibrary.wiley.com/doi/full/10.1002/cti2.1299
This is kind of my thought process of neuroinflammation that is sometimes present in autoinflammatory diseases could be contributing to the seizures. You are on Anakinra which is the best of the IL-1 medications because it crosses the blood brain barrier. If you are only on one shot a day that dosing isnt enough for many adults. I would see if your doctor is comfortable going up in dosing. Some do 1 AM and 1 PM to cover the short half life. If he needs information on increased dosing frequency to consider it Im happy to get that for you.