Pistol Posted January 23, 2018 Report Share Posted January 23, 2018 Hi - I am wondering if anyone else here experiences seizures from POTS? With the type of POTS I have I pass out when my BP drops and I get seizures when my BP goes up. This is (so I am told) because when the blood vessels dilate the BP drops and the circulation to the brain stops and when the autonomic system overcompensates all the blood vessels constrict and there is no oxygenation to the brain and that's when I get seizures. It would help to know if others experience this too? Quote Link to comment Share on other sites More sharing options...
DADofPotsSon Posted January 24, 2018 Report Share Posted January 24, 2018 My Son#2 had this problem for many years, probably 10 years, though after many MRI & EEG test it was determined that his was convulsive syncope, but once in a while the CS events were back to back sometimes they would convert to a Grand Mal seizure. They found if they control his BP or keep it up, it reduced the CS events. His meds are florinef, Toprol XR, and a low dose of dilantin. DadofPotsSon Quote Link to comment Share on other sites More sharing options...
Clb75 Posted January 24, 2018 Report Share Posted January 24, 2018 I never had that, but when I first got sick, I passed out a lot. I had an abnormal EEG, it didn’t show seizures but it wasn’t normal either. My guess is lack of blood flow to the brain somehow affected the reading. My neurologist told me about convulsive syncope as DADof PotsSon mentioned, though I didn’t have that. I found that florinef really helped my syncope, as my BP was really low. Now it can run a little high at times, but when I tried lowering the florinef I started passing out again. My cardiologist said he would rather it be on the high side as a result. Have you tried any meds yet? It’s possible to get the syncope under controll or at least diminished with meds, so hopefully there’s something out there that can help you. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 24, 2018 Author Report Share Posted January 24, 2018 Thank you all for your response. I am on a lot of meds: cardiac meds, Ritalin, SSRI, GI meds, etc... was on seizure med (Keppra) foe a whiie, too. I had an episode while hooked up to telemetry and EEG while in a epilepsy -monitoring-unit (for 4 days) and it showed no circulation to my brain while heart was OK. I also had many recorded seizures during surgeries and procedures that were monitored and witnessed. I keep being told that this very rare but I am sure there are others experiencing the same thing? Quote Link to comment Share on other sites More sharing options...
DADofPotsSon Posted January 25, 2018 Report Share Posted January 25, 2018 A young neurologist did try Keppra on my Son#2 and he had many more events so it appeared to increase and to make the events more severe, so very old neurologist suggested dilantin usage rather than Keppra (I believe he had mentioned that he had success with it before on a POTS patient, but more as a class b antiarrhythmic which did stop the convulsive syncope. He has since been taken off the toprol as the doctors feel the dilantin controls his heart better. He claims he has not had any SVT's since being on dilantin. It also stopped the restless leg syndrome. DadofPotsSon Quote Link to comment Share on other sites More sharing options...
yogini Posted January 26, 2018 Report Share Posted January 26, 2018 Seizures aren't a symptom of dysautonomia. I went into convulsions once - when I first got sick and I think that my body was trying to bring up my BP. But that is very different from a seizure, like an epileptic seizure. Definitely mention this symptom to your doctor Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.