dawn

Mine always runs 80's, 90's when lying down. This has been all of my life. I finally bought an adjustable bed where the legs can be elevated and do this in the morning for a half hour before getting up. Helps with tachycardia when you get up.

I couldn't tolerate a cpap, tried twice. Low sats while sleeping and morning headache. Have been using oxygen at 2 L for several years now while sleeping and it helps. O2 sats are normal with oxygen therapy.

Amazon carries many gluten free products

Is it OK to use a whey protein with taurine in it? Dawn

Hi Maggie, I am almost 55. Was diagnosed at 37 but, I think I was born with POTS. I have to say that now, after removing stress from my life (a difficult marriage) I am feeling much better. My doctor for 18 years encouraged me to get a divorce, finally in February, I got up the courage to face life alone. I am fortunate that beta blockers work well for me. I have over the years learned to deal with all of the bizzare symptoms, but lack of stress is the key. I have learned to just give anything stressful to God and let it go. Not easy, but I am stubborn. LOL. Dawn

Been on it for 15 years. Take 10 mg 4 times daily. My understanding,it is the beta blocker of choice because it crosses the blood/brain barrier and helps with anxiety. Dawn

Just joined and sent to all of my contacts. Thank you for doing this:) Dawn

Sorry for you, Before I was diagnosed, I was always treated like a psychiatric patient when I went to the ER. Finally, my husband came with me. He does have a good understanding of human anatomy and physiology. He got right in the doctor's face and told him that he would not tolerate him treating me like I was a head case. He told him that something was physically wrong with me and it was their job to find out what it was. After that, I was treated well. Dawn

Hi Tony, Welcome to the forum. I was 35 when my symptoms got really bad. I am now 53. You will probably find that you will have days that are not too bad and bad days. I was off work for several months and then returned to full time work for 13 years. I finally gave up and am now on social security disability. What part of the country do you live in? It is very important to not let fear control your life (easier said than done). I became so anxious about what may happen that I was agoraphobic. Stay connected to people who understand. Educate your friends, family and co workers. You will probably find that people become compassionate and helpful when they understand what you are going through. Don't feel guilty. You are fortunate to have found a good internist, I worked with a wonderful one for 17 years. Never had much luck with neurologists or cardiologists. Fainting is scary, been there many times. Assure yourself that your body has back up systems that kick in when you faint. You will find children are very understanding. I always had foster children as well as my own children. They would tell me when I looked like I was going faint (my speech would get slow), they would just say "mom, it's time to lay down and put your feet up." I can't tell you the number of times we laid in the grass and counted stars (instead of counting my heart rate) to distract myself. Those are some of my fondest memories. I finally did not "let fear rule me." I know no matter how bad things get, God has his hand on me. I am his child and he cares about me. Dawn

Do you take an aspirin daily? I know several people who had a neurologist that suggested daily caffiene and an aspirin for their migraines and they had great success. Dawn

I have been to Mayo twice and both times the three tests you mentioned were the ones that I had. The second time I also did a 24 hour urine for sodium. I also had the epinephrine and norepinephrine levels while laying and standing. I hope that they can help you. Dawn

I am on propranolol 10 mg 4 times daily. I have been on it for 15 years. I first tried 20mg but it caused fainting. I then tried toprol XL, also caused fainting. I take it every 5-7 hours. If I'm tachy will take after 4 hours or so. It is a betablocker that crosses into the brain so it helps with adrenaline surges. It interferes with sleep and also takes away your sex drive. I tolerate it well and could not function without it. I take my first dose an hour before getting out of the bed in the morning. I still have tachycardia when I first get up, around 120. After I get a quart of liquids in me, I am better. Hope it works for you. Dawn

Maxine, It sounds like you are on physical and emotional overload. Sometimes when it rains, it pours. 15 months ago my brother had a liver transplant. I took the train to Chicago (it was a 5 hour trip). We stayed in a hotel for 2 weeks and had to go to the clinic daily. I don't know how I ever got through it. I remember going outside at 4:00am and just breaking down and crying. As far as the colonoscopy. I had one last year with propofol and did very well. I went into the hospital for the prep, so I could have IV fluids going. I know when I went in for the procedure my BP was 80/40. On the colonoscopy report it said my BP stayed around 98/60. I have had propofol twice now (had it with my gallbladder removal also). It works great and there is no hangover after. I was up and walking 1/2 hour after the colonoscopy and went home within the hour. Sending prayers your way. Dawn

I was fortunate enough to attend one of the conferences put on by Linda Smith and her husband (NDRF). It was held in Minneapolis. It was a wonderful experience. I met Dr. Grubb & Dr. Goldstein. Dr. Low also spoke, as did several others. It was a two day conference. I learned so much. It was shortly after I was diagnosed by Dr. Low. I really learned a lot from Dr. Goldstein (National Institute of Health). My husband attended with me, they had rooms in the hotel at a discounted rate and the conference was held downstairs in the same hotel. The doctor's ate meals with us and chatted. Answered all questions. I guess I was very lucky to have had that experience. Dawn

My husband refers to my symptoms as the "spinner card." I have tried many times to find a reason why some days, are so much worse but, have not been successful. I have to learned to just go with it. It is hard. Mornings are always awful for me, that doesn't vary. I never make an appointment until after 2:00 pm. Dawn