Detrick7 Posted November 3, 2009 Report Share Posted November 3, 2009 I was diagnosed with Neurocardiogenic Syncope (NCS) about a month ago and had a tilt table test a little over a week ago. I now know I have had NCS for about 15 years and am 31 years old. I was perscribed Citalopram (20 mg). Is anyone else taking this? It is a depression drug, I do not have depression, but doctor said some SSRIs help with NCS. It seems to be helping so far, but have suffered some side effects (jaw clinching, waking up in middle of night with heart beating, moderate sexual side effects). I know that this kind of drug takes weeks to build up in your system to properly work and am hoping this really helps. I am also drinking 100 ozs of water/G2 a day and on a high salt diet. I have my worst "episodes" in the morning in the shower. I almost faint or getting lighted headed/black out 5-10 times in the shower. This makes me feel nausea and "just don't feel right" for a good part of the morning, and usually feel fatigued a good part of the day. Somes I twitch really bad in a seizure like fashion and drop anything I holding. Sometimes just a little light headed. The Citalopram has made the epsiodes less frequent and not as bad so far. I am pretty sure I have excercise intolerance, which I think is related to NCS, since anything I do that gets my heart rate going makes me very tired and I just want to lay down. I just started going to this cardiologist who knew what I had, so I am still in the process of learning more about my condition. It was a huge relief finally knowing what was wrong with me. I have known for years something was wrong with me, but could never put my finger on it. Since my occasional physicals came back fine I just lived with it. The intolerance of heat, hating to stand in line, unable to stand still, etc. etc. finally started makig sense after finding the right doctor (I bounced around to a handful of doctors before finding one who knew what was going on). Finding sites like dinet have been a huge help. My friends and family are supportive, but I still get weird looks when I initially explain what is wrong with me (the exact reason I kept it a secret for so many years). Sorry I started to ramble a little bit. Basically I would like to hear from anyone living with NCS, especially if you are taking Citalopram or another SSRI. What helps? What doesn't help? Does the medication help you? Side effects? etc. etc. Thanks,Detrick7 Quote Link to comment Share on other sites More sharing options...
kristeen11 Posted November 3, 2009 Report Share Posted November 3, 2009 I tried a SSRI but just got more dizzy spells...so the doctor had me stop them...he didn't even have me try a different SSRI, I don't think he thought they'd help. He wants me to try epogen (procrit) injections - but I am a little nervous since I can't find many people who have actually tried it and was successful, but this website says it seems to work well but is expensive. Salt does help me with less lightheaded spells (+ lots of fluids)...as for your morning showers - if you are that bad with the showers, I would suggest you showering at night when your blood is moving around better - the morning is bad for a lot of us pots people...our blood is used to just pooling and not moving around too much after laying down. For me, I need to sit and lay around a bit before I can get up and get going or I just feel worse. Good luck and let me know how things go!KrisI was diagnosed with Neurocardiogenic Syncope (NCS) about a month ago and had a tilt table test a little over a week ago. I now know I have had NCS for about 15 years and am 31 years old. I was perscribed Citalopram (20 mg). Is anyone else taking this? It is a depression drug, I do not have depression, but doctor said some SSRIs help with NCS. It seems to be helping so far, but have suffered some side effects (jaw clinching, waking up in middle of night with heart beating, moderate sexual side effects). I know that this kind of drug takes weeks to build up in your system to properly work and am hoping this really helps. I am also drinking 100 ozs of water/G2 a day and on a high salt diet. I have my worst "episodes" in the morning in the shower. I almost faint or getting lighted headed/black out 5-10 times in the shower. This makes me feel nausea and "just don't feel right" for a good part of the morning, and usually feel fatigued a good part of the day. Somes I twitch really bad in a seizure like fashion and drop anything I holding. Sometimes just a little light headed. The Citalopram has made the epsiodes less frequent and not as bad so far. I am pretty sure I have excercise intolerance, which I think is related to NCS, since anything I do that gets my heart rate going makes me very tired and I just want to lay down. I just started going to this cardiologist who knew what I had, so I am still in the process of learning more about my condition. It was a huge relief finally knowing what was wrong with me. I have known for years something was wrong with me, but could never put my finger on it. Since my occasional physicals came back fine I just lived with it. The intolerance of heat, hating to stand in line, unable to stand still, etc. etc. finally started makig sense after finding the right doctor (I bounced around to a handful of doctors before finding one who knew what was going on). Finding sites like dinet have been a huge help. My friends and family are supportive, but I still get weird looks when I initially explain what is wrong with me (the exact reason I kept it a secret for so many years). Sorry I started to ramble a little bit. Basically I would like to hear from anyone living with NCS, especially if you are taking Citalopram or another SSRI. What helps? What doesn't help? Does the medication help you? Side effects? etc. etc. Thanks,Detrick7 Quote Link to comment Share on other sites More sharing options...
lmt033167 Posted November 3, 2009 Report Share Posted November 3, 2009 I have NCS and OI; along with some heart probs. I take Midodrine 3x a day and Bisoprolol at night for heart and Lexapro.It's ok; I don't think they control my symptoms as much as I would like but I'm on a wait and see type deal. I was just dx not long ago so they're having to find the right combos. I'm still dizzy and fainting but salt loading has helped alot; gatorade does nothing for me I've found.I know my heart is probably going to be affected by the salt loading and foods I eat/drink, but it's the only way I can stay upright.I do notice Midodrine wears off very quickly now vs 2 mths ago when I started them, so I'm looking for a new combo I think. Quote Link to comment Share on other sites More sharing options...
Detrick7 Posted November 4, 2009 Author Report Share Posted November 4, 2009 Thanks for the reply Kris. I can understand your fear about trying something when you can't find other people that have tried it. I am still struggling with being on a "depression drug" when I don't have depression. I haven't found anyone that takes the specific one I do. My opinion is though if you trust your doctor, listen to him (her). I have considered the showering at night thing, but I usually sweat a in my sleep and always feel like I need a shower in the morning even if I shower at night. Not sure if the sweating is related to NCS, I am not over weight. Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted November 4, 2009 Report Share Posted November 4, 2009 Hey Detrick,Lots of people here on the board take SSRI's for our POTS/dysautonomia/NCS, not depression. I've been taking Paxil forever. It is annoying, however. Sometimes I get mailed things from my insurance company about "Coping with depression." It's stupid, because SSRI's are taken for all SORTS of things. I also take metformin, a diabetes drug, for polycystic ovarian syndrome. I don't have diabetes. So I get mailed stuff about diabetes, too. It's annoying. I feel your pain. Amy (Mrs. Burschman) Quote Link to comment Share on other sites More sharing options...
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