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Epilepsy vs POTS - misdiagnosis??
Tue, 10/31/2017 - 21:26Hello and thank you for reading this. I have a question that can prob only be definitively answered by a specialist, but i wanted to see what others might think. I have been a diagnosed epileptic for about 13 years now. I have a front temporal lobe focus and secondary generalisation. Medications haven't worked for me. I am currently taking 4 types and i think i have tried about 6 others. Either they seem to not work at all or i have bad side effects. I have recently had some other symptoms and have been told of a cardiac condition called POTS that has these symptoms. Upon further research temporal lobe epilepsy/seizures can be related to POTS, and a lot of my symptoms (even ones i hadnt thought were anything) were POTS symptoms. Basically im wondering if maybe i dont have epilepsy at all, and its just pots. As i think back a lot of my grand mal seizures happened when POTS attacks are most likely to occour (i.e. when rising) and i had more seizures when POTS is likely to be worse (dehydrated, pregnancy (need more blood/heart has to work harder)). Also over the last year i have had the best control that ive had in a long time, and whats new is i get a monthly infusion of a blood product and regular blood infusions is a treatment option for POTS. So i want thoughts if maybe i should see a cardiologist, or if i should continue the same treatment that hasnt done anything. Basically, because of the electrical activity (that i have literally 100%of the time) is pots a useless diagnosis for my seizures. Does this make sense?
It sounds like you are in for
Submitted by birdman on Sat, 2017-11-04 - 21:45
It sounds like you are in for a rough ride just to accurately diagnose your condition. Working through your doctors of course you will probably need to do some medication changing to see what the effects are. It doesn't seem like you should have to take four different medications for seizure control. If it is that difficult to control and you have tried six others you deserve a chance at an alternative treatment. But then again like you say you cannot be sure epilepsy is the cause of your problems. Keep good track of all your medications, seizures, doctor visits, and other related details. I think doctors value the information you keep at least as much as the tests they perform. Isn't there some type of heart monitor to help with diagnosis?