samannran

I have PAF, and I work full time for now. I teach, and I sit most of the day. I don't know how much longer I can do it. I've taken several sick days already this year.

I find it interesting that others have trouble being numbed for dental work. I've always had that problem and never made the connection. I remember as a teenager telling the dentist that I could feel what she was doing. She said there was no way I was feeling pain and went on to perform a root canal on me!! She said she had given me plenty of shots. I was numb. Needless to say, she's not my dentist now! I learned on my own to stay away from epi after passing out when I was raised up. The dental assistant could barely feel a pulse and my bp was way too low. I asked my cardiologist about it later, and he said to stay away from epi. I hope your visit for the crown goes much better, Sam

I've fainted twice while sitting down. If I have to sit for very long, I sit with one foot under me. I also fidget and try to keep my legs moving. I wear support hose most of the time. They help, too. I hope you are feeling better today. Sam

Thanks for the info on niacin. I drank G2 a few times, but it gave me a terrible migraine. Now I know why. Sam

Hi Jeannie, I agree with you about our illness taking a toll on our family. My husband & I have never really had an active social life outside of work and church functions. We've both always enjoyed coming home from work and hanging out at home watching tv, etc. I guess I'm lucky in that area because we don't feel like we've lost our social life. I have a scooter to ride if I feel up to a trip to the mall or a flea market. You mentioned not making symptoms the focal point of your life. I agree with that, too. I tend to go the other direction. I try not to always talk about my illness with my family and others. If they ask, I might mention briefly that I'm feeling ill. However, my hubby & daughter always know when I'm feeling really bad. They can tell by looking at me, or if they have to help me up off the floor. We'll be married 15 years this Thursday, and I know I'm blessed. Even though my hubby is very supportive, I've told him that I sometimes worry about him growing weary with putting up with me. He always reassures me that I've got nothing to worry about. However, we all know how hard this illness is for those of us living with it and for those who are taking care of us. Sam

I've lost 11 pounds this summer by cutting out the bad carbs. I eat a lot of lean protein, veggies, salads, beans, and whole fruits. I'm not able to exercise. This is the first time in years I've been able to lose some weight. When I started taking Coreg and Diltiazem, I gained 10 pounds quickly, then 5 more. I counted calories for years without losing anything. I've got more to go, but it's nice to finally have a little success. Now if I can just keep those pounds off!

Hi Kat, 1. Recovery never mentioned because doctors think it's genetic; try to control symptoms- My neurologist recently told me I had paf since so many systems are involved now. 2. 3 3. exercise intolerant; occasionally ride a recumbent bike for 30 minutes 4. 20 + grams Good luck with your study!

Thanks for all of the replies. My parents don't have dysautonomia, but my grandma did. My daughter knows a lot about this illness. I'm going to go ahead and take her to a doctor. It took me way too long to get a diagnosis. We'll just hope for the best.

My 13-year-old daughter is having problems with heat intolerance. She turns pale and complains of not being able to breathe. Her behavior reminds me a lot of how I was at her age. I started fainting at 14. Also, her bp was 90/60 a few weeks ago when I took her to the doctor for a sinus infection. My question is, do I take her in to be evaluated for dysautonomia now, or do I just wait and see??? One of my worst fears is passing this on to her. My mind tells me it wouldn't be my fault, but I know I would still feel guilty. I just hate the thought of her having to deal with this every day of her life. I thank you in advance for any advice. Samantha

I've noticed a lot of research stating that most people with an early onset recover. I've had symptoms all my life, started fainting at 14, and got diagnosed at 27. My illness keeps progressing, and I'm 32. I read a lot of posts from people with similar stories. I hope more research is conducted about patients who have been sick most of their lives. I keep hoping I'll "grow out of it." But so far, no luck. If I didn't have so much brain fog, I'd do some research myself!

This happens to me, too. If I'm on my feet for very long, it's like my brain is starving for oxygen. Of course, so much blood pools in my legs, I'm sure my brain is starving for oxygen. I agree that it's very embarassing. I'm a teacher, and I really struggle with the loss of words.

I get severe blood pooling in my legs. They itch quite often. For some reason, I've never thought to connect the two. There's probably some connection.

I've been taking Alli for about a year now. Unfortunately, I haven't lost the extra pounds I've gained from being inactive. However, Alli has really helped with my IBS-Constipation. My doctor recommended Alli for constipation after I had adverse side effects to a prescription medication. I think I haven't lost weight on Alli because I don't eat much fat. Alli absorbs fat. I haven't had any side effects from Alli, and I would definitely recommend it. Just be careful about following the fat intake rule. My sister takes Alli and had some bad side effects when she ate too much fat in a meal. She's lost 12 pounds, though. I hope it works for you.

I didn't have a trauma, viral, or bacterial infection prior to dysautonomia. I've always had it. I believe, and my doctors believe, that mine is genetic. My grandma had my symptoms for years and never was diagnosed.

I took a low dose of Pindolol three times a day for 1 1/2 years. It kept my bp lower than my usual low, and it made my fatigue a lot worse. However, I had been on just about every other beta blocker, and this was the only one I could tolerate a little. After ending up in the hospital for very low bp, I was taken off of Pindolol. The doctor came in and checked on me. He told me not to get up out of bed because my bp was low. I asked him what it was. He said 85/50. I told him it had been running that for a few years. He couldn't believe it. Anyway, now I'm on Coreg and Diltiazem. They have side effects, too, but the Coreg really helps keep my heart from feeling like it's pounding out of my chest. My bp runs 90/60 - 100/60 most of the time. I hope you find the right medicine combo that helps.

I was six the first time I had symptoms. I never could tolerate the heat and often complained of dizziness. I started fainting at 14. I recently read my medical records. My mom would take me to the doctor. The doctor would tell her that I was fainting from ear infections, anxiety, or some other crazy reason. They would always do an ekg and nothing ever showed up at the time. I kept fainting every so often. Then, when I was 24, I started having life-altering symptoms of fatigue, racing heart, migraines, dizzy when standing up, etc. I was told it was anxiety, I was a wife, mom, and college student. It was just stress. I decided to switch doctors after I gave blood at a blood drive and spent 3 hours going in and out of consciousness. Someone had to come drive me home. The next day, I met a doctor willing to listen to me. He sent me for an ep study and a tilt table. I had an ablation for AVNRT and was diagnosed with NCS and OI. I finally felt validated, and my mom did too. She always knew something was wrong. I still go to the same doctor, and I will always be thankful to him that he took my symptoms seriously.

Thank you all for responding. Today has been a much better day. I've only felt a few flutters. I have worn a holter monitor a few times, and it showed pac's. But I only had a few when I was hooked up. My cardiologist wasn't concerned with those. He is knowledgeable about OI, thankfully! I've had an ablation in the past for AVNRT, and both of my grandmas had A-Fib that caused fatal strokes, so I tend to get scared when my heart feels out of control for so long. I felt so much better after reading your posts. Once again, thanks!!

I've been having palpitations since 5:00 am this morning. I woke up with them. They haven't let up at all. It feels like my heart is jumping up in my throat at times. Other times, I feel skipped beats. My husband felt of my pulse for a while and couldn't believe it felt like that. I'm having more irregular beats than regular. I went to the ER last month for fainting twice and having severe weakness on the right side of my body. After countless tests, the doc just told me that it's because of the orthostatic intolerance. My husband had to help me back out to the car because I couldn't walk. I've had these episodes in the past, but this seems so much worse. My cardio told me before that I could double up on Coreg if I have an episode. I've taken two extra pills today. I've tried bearing down to stop this, and I even put my head in a large bowl of ice water because a family member said it would "shock" my system. Yes, I'm that desperate! Nothing is working. Does anyone have any suggestions?? When do you decide to risk another disappointing, expensive trip to the ER?? Any advice or suggestions are greatly appreciated.

I apologize for the phrase "don't have a choice but to work." Of course, I know that giving up working is extremely hard. My husband lost his job when a factory closed in our area, and he's still unemployed. I am the main breadwinner right now until I am forced to quit driving. We have a child, and we're also helping support my disabled father. That's the only thing I meant by that phrase. I know many others are in the same position. I've been reading posts for two years now and occasionally post something. I will go back to just reading because I, by no means, wanted to hurt anyone or make anyone cry by something I inadvertently posted. That makes me feel awful. Once again, I'm sorry. God bless all of you. May they find a cure soon!

I know this question has been posted before, but I couldn't find much information in the archives. My cardiologist is willing to refer me to a dysautonomia specialist. I was diagnosed in 2003, so I don't need a diagnosis. I need someone who actually understands what is going on in my body. I haven't been to a neurologist since before my diagnosis when I was diagnosed with migraines and some nerve damage. My question is this, does anyone have a suggestion on who I should ask to be referred to?? I looked on the physician's list, but I would prefer to hear personal opinions from people receiving good care. My pcp and cardio don't seem to understand the severe fatigue. My pcp even told me she didn't "believe" in chronic fatigue syndrome. Since I'm getting worse every year, I need someone that understands this disorder in case I ever have to file for disability. I don't ever want to, but I don't know how much longer I can drive. I'm in Arkansas, and there aren't any specialists in my state. I know I'll have to travel, and I'm willing. Any advice will be greatly appreciated!

I have NCS, too. I hate to hear that your doctor passed away. Concerning driving, I've had to pull off the road more than once and recline my seat because I was so lightheaded. I was afraid of passing out at the wheel. I hate to drive, too, but I have no choice. I have to drive to work. Supposedly, people with NCS don't usually pass out while sitting down. However, I have fainted while sitting on the couch. I was having presyncope symptoms, sat down, called my mom for help, and passed out while on the phone.

I'm on Diltiazem 120 mg. extended release, and I take a low dose of Coreg (3.125mg.) twice a day. I have tried so many medications and these are the only meds that I can tolerate. The beta blockers that I have tried in the past made my bp go so low that I eventually wound up hospitalized. I have tried Lopressor, Toprol XL, Pindolol, and Atenolol. My bp was too low on these. I've also been on Zoloft. I couldn't tolerate that, either. I am definitely better with meds than without them. I am glad to know that my ablation for AVNRT didn't make me worse. I've been told I have sinus tachycardia. My cardiologist seems to know about POTS and NCS, but his prescription for the fatigue is to exercise. I have told him that after exercising, I need a few days to recuperate. I can't seem to make myself do much after work when I know that I'm going to be miserable. Not to mention, I don't like the way my heart feels at 180 bpm. I mentioned a referral to Cleveland, but he said he wanted to wait and see what the test showed.

My heart rate wasn't 35. It actually increased by 42 beats after being straight up for about six minutes. Last night, I had brain fog and couldn't do the math. Before the ablation, my heart rate was extremely high. I didn't know in 2003 when my doctor diagnosed me that ablations made things worse for dysautonomia patients. He might not have known that five years ago, either. All I know is that I feel awful. I can't stand in one place for very long at all. All of the lifestyle changes that I have made are not alleviating my symptoms. My symptoms are worse. Thanks for replying, Samantha

I was diagnosed with NCS and AVNRT in 2003 after a TTT and EP study. I had an ablation for the tachycardia, but my other symptoms only seemed to worsen. I've been under a cardiologist's care ever since. Because my fatigue and many other symptoms have seemed a lot worse lately, my cardio had me do another TTT today. However, he had me stay on my meds. I take Diltiazem and Coreg. My heart rate went up 35 bpm when standing while my bp dropped. My doctor didn't want the adrenaline med injected. I didn't faint, but I was very sick to my stomach and developed a migraine and my usual symptoms. My question is, does this sound like POTS? During my first TTT, my heart rate skyrocketed, and I fainted. However, I didn't get a POTS diagnosis because of the tachycardia found during the ep study was blamed for the fast heart rate. I've been reading the posts on the forum for a long time now. Any comments/opinions will be greatly appreciated. Thanks, Samantha

I completely understand! I'm a middle school teacher, and I really want to go back for my Master's degree. Right now, though, it's all I can do to drive the 20 miles home from work each day after working all day. Some days, I also feel like I should be filing for disability. But I really love my job, so as long as I can manage to stay upright and work, I'm going to continue. I have OI and NCS. My principal knows about my illness, and she's very supportive. My co-workers know what to do if I hit the floor. This is my fourth year to teach, and so far, so good! Just hang in there and try to find positive things daily. Maybe one day, they'll find the cure!