dawn

Prilosec OTC is what my GI doc suggested. I noticed more arrhythmia while on it though. I take Zantac at bedtime which helps. When I'm really bad I have Zofran(it dissolves under your tongue. Very expensive though like $40.00 a pill. Dawn

I am still a believer in vicks vapor rub. Rub my chest and neck, put on warm jammies and snuggle up. I haven't ever taken anything systemic except Tylenol and vitamin C. Dawn

Hi, Lately I have been getting episodes of goosebumps sometimes a minute apart. Really bad at night. I wake up in fetal position with my hands between my knees with goosebumps and chills. I think this is a new one for me. Anyone else get this???? Dawn

40 weeks, boy 9#3ounces. Vaginal delivery, no meds. Dawn

With excessive thirst you should always think of high blood sugar or dehydration. I can't remember if Florinef effects blood sugar or not. You might want to ask your pharmacist. When I took florinef I wasn't thirsty though I never am. It did deplete the sodium in my urine so I had to stop taking it. Be sure to get your sodium and potassium checked often. Dawn

If this was from a viral onset or happened suddenly I wouldn't worry. Most recover within 2 years. I don't know your history. But Mayo clinic and the NDRF conference doctors feel this way. I think I have had POTS since I was born!!!!!!!!!!!!! I worked full time until I was 48. I had a year off when I was 37 and diagnosed. At age 50, this is the first time I feel like I don't have the fight for this illness anymore. My life was hard when I was younger, but I had a vision. I had 2 difficult pregnancies, went to nursing school and basically just pushed myself to my goals. Don't give up, fire up and get mad. Don't allow this illness to take away your dreams. Draw a line in the sand and say NO MORE, then go for it. I fainted, I vomited, I dealt with extreme anxiety all my life. It is surprising what we can do when we just say no, I will not let these symptoms rule me. Dawn

I take inderal. Are you sure it is chest pain and not pain from his stomach or esophagus. It's hard to tell sometimes. I know if I take my inderal without food I can feel the discomfort in my chest that is coming from my stomach. Is he taking it with food??????????? Dawn

Don't take it personal. I have had the same internist for 13 + years. Sometimes he just says I don't know what to do for you anymore. He is as frustrated as me sometimes. One day he spent an hour with me, shared the fact that he was having problems himself with panic and alot of stress with his 16 year old. I think we tend to forget that they have stress in their lives and can't always be the "rock" when we see them. Dawn

Jacquie, Yes, I know how you feel. I was always very social. Now my contact with friends is usually by phone and sometimes I'm in my PJ's for days. Occasionally I will go out with a group of my friends for supper, really occasionally, and when I do I just don't feel connected anymore. They all have so much going on in their lives and they are so full of energy. I sit there and can't eat much or I'll get sick and wish I was home again. You are still young, hopefully you will have a remission. I had a break from POTS for about 7 years once. Stay positive and make sure you do lower body strengthening exercises if you are able. It helped me alot when I was younger. Dawn

Amy, I know exactly how you are feeling. I made another appointment with my neurologist today. My husband said "Why?" I said just so I can tell him how miserable I am. My BP has been running 80's/50's for days and I feel like crap. I don't sleep well. Feel fatigued and anxious at the same time. I pray alot. I wake up during the night and automatically start to pray. It has become habit. I just want to remind God that I am here and suffering and I ask him to show me mercy. I know how hard it is. I wish I could tell you of some wonderful treatment that has helped. I have tried every med except mestinon (my sodium is too low). Try to keep a good attitude, I know how hard it is. When I'm feeling really blue, I watch a comedy (40 year old virgin) this weekend. It is a little escape. Hang in there. Hugs Dawn

How COOL!!!!!!!!!!!!!!! I saw the write up in yesterday's USA Today. It was a good article. Looking forward to seeing the movie. It's good to see something exciting and positive happening in someone's life. We need more of these kind of posts!!!!!!!!!! Hugs, Dawn

Vanessa, I read your post and feel so bad for you. I understand your disappointment. I have been to Mayo twice and they didn't have any more to offer than my internist. I had the TTT and other tests that I can't have locally but was so disappointed they could not help me. I think we all just wish we would go into a new clinic and someone would have the answers for us but they don't. I also tried another big clinc about 4 hours from home this summer, there was a physician on the list there who specialized in POTS. Same thing TTT, no new advice. He was very nice and compassionate. But, everything he said I already knew. I know how hard it is to fight everyday and am also so tired of it. It is helping to see a counselor. We all struggle, even people who are healthy want to give up sometimes. It's normal. Don't be so hard on yourself. It's OK to lay around. I have finally accepted that. My son and I were talking the other night, he is 24, he said "mom, you will never be a new car again", if something breaks down to the point that you cannot move you will need to go to the doctor. As long as you can get from point A to point B keep going. You can't be thinking about the brakes are bad, the tranny is about to go, the tires are bald etc. I tend to live inside myself and dwell on my symptoms. It's hard not to when you feel so bad all the time. But, it isn't helping so I'm slowly working on changing. It was a really positive thing that you went out today. Focus on the fact that you succeeded. I'm going to try to start driving again, I haven't for a couple years. Even writing it gives me anxiety. GOOD GRIEF!!!! We're all here for you. Hugs Dawn

Dizzygirl, Milk is the worst thing for heartburn or ulcers said my GI doctor. Milk actually makes our stomach's produce more acid. Have you tried Mylanta gelcaps? I like those, usually take a couple at night, because we make alot of stomach acid then. The other thing I do is nibble on saltines throughout the day, even eat a couple if I wake up during the night.(Like when don't I wake up during the night) Talk about wishful thinking. Good luck Dawn

Thank You all so much, you made my day. I turned the big 50. I didn't feel very good today. We went to quizino's and got subs and brought them home for supper. My best friend Jill stopped tonight after work, she brought me a huge bag of gifts, scrapbooking stuff, lots of body lotions and candles, scrapbooking magazines, a years subscription to Oprah magazine, quizno gift certificates and chocolate!!!!!!!!!!! She is the best friend anyone could have. Neither of us has a mother anymore so she is like my mom too even though we're only 3 years apart in age. She calls me everyday. I would be lost without her. I got alot phone calls and cards and even a couple of presents in the mail! It was so nice to have all this attention for a day. Thank you Katherine for starting this thread and to each of you for all your birthday wishes, you'll never know how much it meant. Dawn

I have seen Dr. Low twice. I got the neuopathy before the POTS. I think though that I have always had POTS just not as severe. I accepted fainting as normal as a child and a teenager. Frequent trips to the doctor with stomach pains, headache etc. Dr. Low had a resident that did my workup, then he comes in and goes over the residents asscessement with you. Usually orders tests for that day and the next. Then you see him after your tests the second day again and he gives you his recommendation. Dawn

If a little fairy appeared to take away just one of your symptoms, which one would you pick? Just curious. I would have to say the anxiety. Dawn

Hi, I have gotten my 2 rejections from social security. Now I am waiting for my hearing date. Just wondering if there is any "accepted diagnosis" I should ask my physician to put in my chart. I know POTS isn't on their list. Just thinking it may make the process easier if one of the diagnosis's from their list is in my chart. Thanks for any input. Dawn

Linda, You are not alone on this one either. I have not been able to have a healthy sex life for years. It puts a real strain on our marriage. I have become passive and usually just avoid the situation but you feel the tension. Beta blockers are partly to blame as they take away the sex drive. But just having sex is not a release for me it actually is a trigger to make me feel sick. I don't know what to tell you, after years of this my husband's expectations have lessened a great deal. We talk about it, it's hard for him to understand but so are alot of my other symptoms. I wish it was something I still enjoyed and could "escape" reality for awhile but it just doesn't happen. Dawn

Hi, I totally understand. It is rare that I have a good day anymore. Maybe once a month. I know what you mean about walking to the bathroom, sometimes it feels like a journey. Climbing the stairs at night to go to bed, I dread it all day. I try to be optomistic. I pray for a better day every night. I started seeing a counselor a few months ago, I always want to cancel on the day but make myself go. She kind of understands. I don't think anyone can really understand unless they have this. I feel like a disappointment to my family alot. I just cannot make myself do things anymore. I used to get mad and just do it. Now I'm just too tired to fight the symptoms. It feels like our lives have been taken from us. I feel bad for you having a little one. Are you on any medications. I could not function without Inderal and Xanax. Dawn

I get frequent PAC'S, SVT & PAT. I have been reassured not to worry. In fact I called my doctor today and spoke with his nurse because every morning for the past couple weeks my heart has been soooooooo irregular when I first get up in the morning. I take Inderal 10 mg 4 times daily. Sometimes drinking a glass of ice water quickly will put your heart in a regular rhythm. I hate the feeling, the pauses sometimes make you think it is going to stop. Most arrhythmias are benign. Cardiologists always say if you don't lose conciousness, don't worry about it. Dawn

Dawn, how did you know your Pots is the adrenergenic kind and how does that affect treatments and other medications. Thanks. Susan Dawn, how did you know your Pots is the adrenergenic kind and how does that affect treatments and other medications. Thanks. Susan I have high catecholamines in my urine. Also had the epinephrine and norepinephrine blood draws at Mayo. My first TTT my heartrate went from 112 laying to 185 in 30 seconds when they tilted me. I take Inderal also 10 mg which also helps with the surges as it is a betablocker that does cross the blood brain barrier. I have tried Ativan and Valium, they both had side effects for me. Valium made me vey aggitated. It's odd how some things work and others don't. Xanax or Klonopin never made me sleepy. I am allergic to Morphine and Codiene so have never taken anything for pain since that reaction after I had a hysterectomy. When I wake up in the morning I take Xanax and Inderal then lay for an hour. I am so hyperadrengeric when I awaken. My husband says I startle awake about every 5 minutes during the night????????????? The 3 Xanax I take daily are all in the morning about 2 hours apart.

You are not being a baby. I have thought I was dying for the last 13 years. Most days we feel like we are. I struggle to accept this illness (obviously). When you feel soooooo sick, it's only natural to think something is very wrong. I have been reassured by the best at Mayo that this is a chronic illness and is NOT life threatening. Hope that helps. Hugs, Dawn

I've taken Klonopin 1mg at bedtime for a couple years. My doctor says although it doesn't make me sleepy, he says it gives my nervous system a rest. I take it around 10:00pm and am still awake at 3:00am. I take Xanax also during the day. I've taken Xanax for 13 years 2-3 times daily. When you feel so bad, becoming addicted to something if it helps is the least of my worries. Dawn

Even with beta blockers I get the surges throughout the day. Probably 20 times a day on average. As I have gotten older, I faint less. My doctor says because our vessels in our legs don't constrict when we stand like someone who doesn't have POTS, the vessels spasm. When this starts our body releases lots of different chemicals in our brains because our heartrate and blood pressure are all over the place. Labile autonomic system he calls it. You would think after 12 years of this I would be used to it and think of it as "normal" but I still struggle. Be glad you are not a fainter. Dawn

You're not alone. In fact I had an episode this morning at 6:00. I was having a nightmare, we were late and in a hurry to get away from something. I awoke to a racing heart and nausea. It's hard to tell if the tachycardia causes the nightmare or the nightmare causes the tachycardia. I wanted to go to the bathroom sooooooooooo bad but knew I couldn't get up with a heartrate that high. I took an inderal and a xanax and waited for an hour to pass. I am sensitive at times to any stimulation, the phone ringing or someone rings the doorbell and it sends me into an episode. I really try hard to watch my breathing. That is where I put my focus. I wish I had some words of wisdom. I do know how hard it is. Dawn