thejohnsongang Posted March 22, 2015 Report Share Posted March 22, 2015 I experienced my first seizure this past week. I have been battling my Pots and fibro for over 10 years. I though I was doing better. Has anyone else has a seizure when they have fainted? Mine was right before I fainted. Very scary for me. Quote Link to comment Share on other sites More sharing options...
DADofPotsSon Posted March 22, 2015 Report Share Posted March 22, 2015 To the layman a seizure is hard to distinguish from convulsive syncope, but generally one with POTS it should be first to determine if it is convulsive syncope. My son#2 has dealt with this issue for 15 years. He has H-EDS, NCS/POTS and convulsive syncope. It has been determined by two university hospitals that in fact his were CS. The official cause was listed as Anoxic in nature due to Hypovolemia, so they added florinef, salt, liquids, toprol xl, and dilantin as a class b Antiarrhythmic.DADofPotsSon Quote Link to comment Share on other sites More sharing options...
cbear1591 Posted March 23, 2015 Report Share Posted March 23, 2015 I recently got a look at my TTT results and was alarmed by the following note: "She lost consciousness and had early seizure type activity due to a drop in her heart rate to about 80 beats per minute and blood pressure to 81/49 mmHg." None of the doctors I have seen so far have mentioned anything about this, so I'm not sure what that means. Does anyone have any experience with this? I don't know if this is a normal symptom for POTS patients... Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted March 23, 2015 Report Share Posted March 23, 2015 Hi thejohnsongang & everybody,I'm so sorry you are scared, I remember when I had my first seizure I was terrified. It's a total sense of lack of control and vulnerability. I wish I could write more at the moment, however I'm feeling really poorly, just wanted to know if you've had an EEG right after your seizure?? If you did have an EEG, would you mind sharing the results.. If the EEG is normal/Abnormal, and also your symptoms before and after would be really helpful so I can send some links and info your way. Take care and hang in thereCbear1591, I will get back to you as soon as I am able to do so! I'm sorry you are going through all of this, I can't believe they didn't even mention that to you after your Tilt, fingers crossed your doctor will be able to shed some light for you. I had these links saved..http://www.ncbi.nlm.nih.gov/pubmed/12963568http://www.ncbi.nlm.nih.gov/pubmed/21870474http://www.ncbi.nlm.nih.gov/pubmed/20046517Dadofpotsson,That's a great explanation as well a really thorough med combo that your son was put on! I hope he found relief with that. hope all is well, Sarah Quote Link to comment Share on other sites More sharing options...
Mike Posted March 23, 2015 Report Share Posted March 23, 2015 I have had a seizure like episode a few times. I was told it wasn't a true seizure but that it was "seizure like" by my doctors. Only happened when I fully passed out. Quote Link to comment Share on other sites More sharing options...
thejohnsongang Posted March 25, 2015 Author Report Share Posted March 25, 2015 Thanks for the imput. I have passed out several times due to my Pots but no one has ever witnessed it until last week. It's the first time my hubby saw me pass out. I have never seen neurology, my PCP and cardiologist have always treated me. None of my syncope episodes have ever been caught on test. Not even my TTT. I have never heard of the term convulsive syncope until now. I will have to do some research on that. Quote Link to comment Share on other sites More sharing options...
Sheri Lynn Posted April 2, 2015 Report Share Posted April 2, 2015 I just got my diagnosis last week. My doctor said my eeg showed spikes and waves that suggested seizure like activity. Although we aren't focused on that right now since there isn't 'clinical evidence' it's still concerning. I'm sorry your having to deal with this Quote Link to comment Share on other sites More sharing options...
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