kristeen11

Hello! I am wondering if there are any POTSies nearby. Please write if you are local!!! Would love to find someone nearby and chat about our local doctors and our experiences!!!

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!

Kris

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