Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
My tests were normal...but I still think I'm having seizures.
Thu, 02/21/2019 - 21:27Hi guys. 20F here. If you could take some time to read my post and share your stories about diagnostic troubles and/or give a little thoughts on what's going on, I would appreciate it more than I can express.
I posted in here before about how my neuro didn't take me seriously because of my MDD (which I've had since I was like 8). Since then I've gotten a new neuro (although haven't seen them yet, will in a week) and had an EEG.
In the past 3 months, I've had 3 ~30 sec "episodes", each around 6 PM, of feeling good, physically and mentally, then stuttering for about five seconds, then suddenly being unable to breathe, move, talk, and I also rapidly swallow and tears fall from my eyes even though I'm not crying. I don't fall down or (I think) have spasms. Because I was taken to the ER twice (the second happened in a class and the third happened in front of my roommates), I've had an EKG, an x-ray of my heart, a CT scan of my head, an MRI, lots of bloodwork, and a few days ago an EEG. It's all normal. Everything is normal except what is happening to me.
My first neuro tried to tell me I was having anxiety attacks despite that I don't have anxiety and she didn't even fully listen to me or review any papers on me before telling me that (the only thing she went off of was that I'm on SSRIs). I felt great before I had them, I swear. Happy actually.
I don't know what the next step is, and I have to wait another week to find out. I'm not saying they're not anxiety attacks, because I'm not saying they are or are not anything. I'm not a doctor. I don't know what this is. I don't know what's going on. I'm so scared of being written off again though. This is weighing so heavily on me.
So has anyone experienced anything relatable to this? If you could share, I would appreciate it so so much. Thank you so much. Take care.
Comments
Sorry I realized after I
Submitted by Jellis83 on Wed, 2019-03-13 - 03:04
Sorry I realized after I posted that only read half of your post. I noticed you said you were on SSRIs. You should speak with the Dr who prescribed them to you too. I used to get absent seizures when I was 18 and when I changed my diet they went away, but last November I started getting what we think are atonic seizures during which I fall to the ground. I'm now unemployed because no one in Fl will hire a liability. Oh, but the point I was making was I noticed a HUGE decrease in episodes when I stopped taking my Seroquel and I was on Seroquel and Effexor (for PTSD) I'm now in the process of weaning off the Effexor. Unfortunately, I've learned the hard way that if you're sensitive to medications psychiatric ones will f*ck you up worse than you realize if you have to take them for extended periods of time. Hope this helps you on your journey!
Hi, have them look into
Submitted by OofFrontalLobeness on Sat, 2020-03-07 - 23:24
Hi, have them look into frontal lobe epilepsy near the brocas area. It can be super hard to diagnose since frontal lobe epilepsy has a very high chance of not showing on EEG even during the seizure, like at all. And frontal lobe epilepsy can be easily misdiagnosed as psychological disorders. You can even have awareness during it. Mine is treated with carbamazepine and it works wonderful. You might also want to get a mri since that's how mine was figured out, cause it turns out I have a rare brain tumor known for causing seizures there. I get weird speech issues during mine and even the sensation of crying on one side of my face sometimes, and during them I'm a bit off- like a drunk. Good luck!
Has your neuro ordered a
Submitted by Jellis83 on Wed, 2019-03-13 - 02:56
Has your neuro ordered a multiple days EEG? That was the first test mine ordered (though I'm STILL waiting for insurance approval) because it's essentially no good to order an EEG since there's no guarantee of triggering the seizure.