samannran

I'm taking Carvedilol (Coreg) and Diltiazem (Cartia). I have been on these for almost two years now. After taking almost every beta blocker available, this combination has the least amount of side effects for me. I do feel extremely tired all of the time, but that goes along with my NCS and OI.

I have enjoyed reading these! I was six the first time I realized that I had trouble tolerating the heat. I was fourteen the first time that I completely passed out after lying in the sun trying to get a tan. When I was sixteen, I passed out while standing outside talking to my boyfriend who is now my husband. My mom took me to the ER. Well, the doctor treated me like I was a druggie, and I didn't even smoke, much less take drugs. He ran a drug test on me and asked permission to do a pregnancy test. I told him that it would be a miracle from God if I was pregnant. He ran one anyway, acting like I was hiding something. After everything came back negative, the doctor patted me on the back and said that I had an inner ear infection, and I would be fine. The doctor didn't even look in my ears!! When my symptoms started really affecting my life at the age of 25, I was sent to a cardiologist. He told me that I was a full time college student, mother, and wife, and I needed an anxiety medicine. He didn't seem concerned that I hit the floor quite often. Thankfully, I found another doctor willing to run some tests on me. I completely failed a TTT, had an ablation for AVNRT, and I was diagnosed with NCS and OI. For those of you still struggling with crazy doctors, hang in there!

I have been taking Coreg 3.125 m twice a day for almost two years now. I also take Cardiazem 120 extended release once a day. This is the only combination that doesn't completely bottom out my bp. It's usually 90/60 on a good day. It also helps keep my heart from always pounding out of my chest. I also haven't hit the floor in a long time. However, I do still have presyncope episodes and days when I can't hardly function. I don't think there's a miracle drug out there. You just have to find something that is tolerable for you. Sometimes, it takes years. It took me three years. I've been on Pindolol, Atenolol, Toprol XL, and Zoloft in the past. I had terrible side effects to all of those.

I am very dizzy/lightheaded when I get up. I set my clock 30 minutes early, hit snooze several times, and lie in bed flexing my feet and tensing my legs. This seems to help some. If I don't do this, I'll have to sit up and lie down several times before I can get out of bed.

The only negative thing I've heard about compression hose is that it is better to wear the pantyhose type. I had an R.N. tell me that there are some risks of blood clots forming in the legs when wearing knee high compression hose. I have the pantyhose type, 30-40, but I can't put them on by myself due to weakness and fatigue.

That happens to me quite often. I've even not been able to drive until I warmed up because of the shaking. The symptoms make me feel like I'm crazy because my husband and daughter will barely be cold, and I'm acting like I'm freezing to death!

I started this drug yesterday after being diagnosed with IBS. My doctor gave me sample packs. I hope it works! Samantha

I had an appointment with my cardiologist today. I've been very lightheaded, dizzy, and fatigued lately. When I'm able to check my bp during these symptoms, it's lower than I like. I've been on Cardizem because I can't tolerate bb's well. My doctor put me on a low dose of Coreg along with the Cardizem. Does anyone else take both?

Hi. I know how you feel. I'm a fourth grade teacher, and I dread another school year of feeling bad. I've not been diagnosed with POTS, although I have the symptoms. I have NCS, orthostatic hypotension, two leaky valves, and migraines. I've also had an ablation. This will be my second year to teach. I have never talked to my principal about my health problems because I'm afraid to. The teachers on my hall know what to do if I faint. Fortunately, that has not happened yet. My daughter is going into 5th grade, but I dread not getting to spend time with her, too. I guess that we are fortunate to have a little time during the summer in between inservices. I hope that you have a wonderful school year! Samantha

Hi, Does anyone else have numbness in their face, arms, and legs?? The right side of my face went numb nine years ago, well before I was diagnosed with NCS. I went to a neurologist, and he did not have an answer for me when all of the tests were negative. For the last few years, I've had trouble with my right arm and leg going numb. It's disturbing! 30 yr. old fourth grade teacher, finally dx at 27 with NCS, Orthostatic Hypotension, had ablation for AVNRT (feel worse now!), mild regurgitation of mitral and tricuspid valves, fainting since 14, cold and heat intolerance

Hi. I have spells like that where I don't actually lose consciousness, but I am unable to speak or function. It's scary! Concerning your eyes, my husband always knows when I feel bad because he says my eyes get glassy and strange looking.

Fatigue