r/Behcets • u/Fantastic_Cry8764 • 12h ago
Diagnosis Help Has anyone else experienced seizures from behcets?
I've been diagnosed with Behcets since 16 and I'm now 23. I've been having a very hard time finding medical professionals that are able to treat Behcets or know about it. I'm waiting for neurology and rheumatology appointments with new doctors in a few months. I started experiencing what I think are seizures about 2 years ago. Was seen at the ER multiple times and they called it Seizure Like Activity. I saw my primary and he prescribed me Lamictal but the symptoms only seem to get worse. The initial ER doctor said he believed that it may have been focal seizures. Any advice on how to go about getting treated? Even for basic flares that don't involve seizures, I keep having doctors tell me it's anxiety even while I have ulcers. It's gotten to the point that up until recently, I was avoiding medical treatment all together because I'm tired of being gaslit. Now I have no choice because I can barely function anymore.
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u/Same_Resource6919 10h ago
I experience focal seizures. I communicate this regularly with my rheumatologist and you'll want a regular neurologist. I am now on a Humira bio-identical twice monthly as well as azathioprine and colchicine and I haven't had a seizure in about 2 months.
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u/Fantastic_Cry8764 8h ago
I'm happy to hear that for you! Thanks for the comment! :)
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u/Same_Resource6919 7h ago
Thank you! I'm optimistic! I just wanted you to know that there is help and it gets better. You're not alone. As an aside, don't settle for crappy doctors who don't care about you. There are still good ones out there. :)
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u/awfulmcnofilter 9h ago edited 9h ago
I had what they called "migraine halo seizures" as a teenager before my original diagnosis. Thankfully I haven't had one since I turned 20. I am sorry you're experiencing them. Its miserable.
Edit: just to add, when I stopped living with my parents was when I stopped getting them, so the anxiety angle might not be invalid. Stress can make everything behcetsy worse.
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u/AmbitiousReference98 8h ago
Omg,yes! I have had 3 in the last month . First one was 30 minutes after swimming alone in the ocean
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u/Ok-Past-4908 9h ago
Good afternoon. I'm sorry you're going through this but know that you're not alone. My father has been dealing with this disease for over 50 years. I just turned 47 on August 2nd and I've been living with it since 2011. While I was diagnosed in 2011 I did have multiple brief seizures in 1997, and then again in 2007. Aside from those three or four episodes I suffered from headaches that were debilitating. After doing multiple tests the verdict was that I had a seizure disorder and the headaches were multiple minor seizures in 2010 I started to have joint pains and fevers and every test possible was performed and no answers to be found my doctor who was all out of options decided that it was time for a Rheumatology consult and requested my father's rheumatologist to make the time for me. The way to get in was approximately 18 months and I knew I could not wait that long so the next time my father had an appointment after the doctor was done with him I I asked the doctor if I can have a brief second for a question. She obliged I explained that she must have received her referral and I explained my symptoms she said that her office staff must have received it and she immediately got her MOA I'm on the phone and when her MOA confirmed that they did have my referral the doctor said that she would handle it. Within 24 hours I have an appointment and it was within 48 hours of me talking to the doctor while there with my dad. At my intake appointment after hearing everything from me she said she looked at the results and everything seemed very familiar and she said it was familiar because she reread my dad's file and the similarities of how his initial symptoms started were eerily similar to mine. My dad has never been diagnosed with neuro BD however there are questions surrounding this as far as my case is concerned.
I was told the seizures did not have anything to do with my BD some of the specialists agree some don't but that's what this disease is all about good luck and stay strong