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

Me again (Dawn),

Our symptoms are so scary. Often, it feels like we are dying.

When the symptoms continue day after day, week after week, month after month, I think it is natural to feel like, someone has to help me.

The emergency room is a place that we used to think, we could go and "be fixed." Unfortunatley, I have never found an ER doctor

who has ever heard of POTS. They leave the room and google it.

We feel abandoned and have to deal with the symptoms ourselves. To feel as though there is something really wrong with us is normal,

there is!!!!!!!!!!!!!!!!! Our autonomic systems do not work as they should. Which leads to so many symptoms.

If you have not had your heart checked out I would do so. I have and holter monitors have showed runs of SVT and when that happens

I do get short of breath. I have learned to just wait it out and recite out loud, "this to shall pass." I am not minimizing what you are going

through by any means. It is frightening. I guess, I am just so tired of the battle, I just have gotten to the point where I say,

"WHATEVER."

We hope, we pray and we wait to just feel a little better. Then another symptom will rise its ugly head.

Be assured that you are experiencing what most of us do. I know that probably doesn't help, wish I had some wisdom for you.

Hang in there,

Dawn

I think about going daily.

I NEVER do anymore. Twice they hospitalized me and didn't do anything.

After that I would go in and they would just send me home and tell me to contact my regular doctor.

It is so frustrating.

Dawn

Hi,

I worked as a school nurse. Have you checked into your long term disability insurance? Mine paid my health insurance premium.

I tried working half time and received long term disability for the other half of my day. They paid my health insurance premium then, also.

It was so hard to give up a job that I loved so much. When I worked half days, I worked in the afternoon.

Now, I receive social security disability.

While I was working, I always showered at night and had my clothes ready for the morning. I got up 2 hours before I had leave for work.

My beta blocker and anti anxiety meds were working by then.

I always start the day with 2 cups of coffee, followed by a 32 ounce bottle of gatorade.

I feel for you. Working with children gives us so much joy and their energy is contagious. I miss it so.

Best Wishes

Dawn

Maybe you should check with your doctor about a sleep study.

It could be sleep apnea. I know that there are times that I forget to breathe at night and wake up gasping for air.

My sleep study was abnormal. Had a lot of shallow breathing. I also had episodes of not breathing for 45 seconds at a time.

I do have a c pap machine, I end up taking the mask off during my sleep, so haven't had much success with it.

Dawn

My social life consists of the telephone and the television:). Throw in the must go to the doctor appointment.

Dawn

Hi,

It took me 3 years.

I think it helped to have a lawyer take care of things.

SS makes you see a psychologist/psychiatrist of their choosing. That was not helpful. She did a lot of memory testing.

I think what helped me the most was I had seen the same physician for 15 years. He and my neurologist both wrote letters to the judge.

They were both very specific about my symptoms.

I did not have to go to hearing.

Good luck,

Dawn

It worked well for me for a couple of years. Side effects were difficulty sleeping and a 40# weight gain.

I now take Celexa (past 3 years) and that has worked the best out of the 5 I have been on.

Dawn

Yes, I frequently look 8 months pregnant.

I wear elastic waist pants. I have a couple pair of regular jeans but as the day goes on I have them unzipped as I can't stand it.

It even bothers me to wear a bra. I can't wait to get home and take it off.

Haven't found a cause, some days are worse than others.

Dawn

I listen to books on tape. You can get good deals on Amazon (new and used). The library also should have them.

My son recently bought me a laptop, it is so nice. I can lay on the couch and prop with pillows and read and shop.

I also use a clipboard and prop on the couch and write cards or just doodle.

Dawn

Linda Joy,

I cannot tell you how many times I have said "I don't want to do this anymore."

I have had severe symptoms for the past 17 years. Had to quit working. My husband has left twice (I had alot to do with that).

I just cannot accept that I am sick. I do not want to be dependent on others. I want my husband to have a good marriage with

someone who can actually be a partner. (He is athletic). I have no desire to have sex due to my medications.

I totally understand your frustration.

I only keep going by the grace of God. My son (age 26) reminded me that "when we are weak, HE is strong."

I have been angry with God at times. Then I realize that God is always there and knows what is going on.

I have to have faith that all of this is part of his plan, do I understand, absolutely NOT.

Sometimes I feel like I am spinning on a merry-go-round and I just want to get off for a bit. Just a little while.

I too have seen many counselors, psychologists etc. It has not helped.

I think, like so many others, we need to learn to live "just one day at a time." When we think about what we want or future

plans we set ourselves up for disappointment.

My heart goes out to you.

God Bless

Dawn