Ernie

Hi, I take 2,5 mg at bedtime and my daily dose is 7,5 mg.

Hi, I still need to be with other people. Without seeing and talking with other people it's like part of me is dead. But even if I can now leave the house it exhaust me to talk and to listen. Even talking on the phone is exhausting. I still do it because for me it is so important to have friends and socialise.

Hi, I am naturally an extrovert but since I became disabled I don't have the energy of the capacity to have a social life. I also lost my social circle because of being so sick. When I was homebound and bedbound for 7 years I found it extremely difficult because I need to see people every day. Now I can leave the house and do so. I feel so much better.

Hi, I just ordered my double size bed 2 minutes ago. I am so excited. I am suppose to get it in 2 weeks installed in my house. Thank you for your support. P.S. Flop: Thanks for making me see what I did not realise. I slept 2 extra days in my single bed to really realise how I hate sleeping in a single size bed. Now I am sure of my choice.

Hi, Thanks for the good wishes. I am going to order it tomorrow. The double bed costs 1,100$ more than the single bed and I have to pay the difference myself. I am the type to sacrifice myself to save money but my husband says that I should get the double bed since I am not comfortable in a single bed. I need pillows to support my knees when I sleep on my sides and they keep falling of the single bed. So I want to think about it tonight. My husband says that it is an investment and I should think about my health. He also said that I would die in it! Then he said that I would probably die in a car accident because I had so many. I would like to think that I will use it for the next 20 years but no garantee came with my body!!!! Any opinions?

Hi, I bought a Polar about 6 weeks ago and I wear it all the time. My HR varies also when I am reclining, lying down or sitting. It varies of about 10 b.p.m.. When I stand up it also jumps 20-40 bpm. I am on about 17 medication and I still have HR and BP variations. I still can't stand for long (5 minutes).

Hi everyone, I just got the answer from my insurance company. It took many months of fighting to finally get accepted. I will order it this week and get it in a couple of weeks. It will help me a lot with the adrenaline rushes. Can't wait to get it.

Hi, It makes a difference if it's not genetic. If it's a virus or accident you may get much improvement.

Hi, It can show BP problems or kidneys issues.

Hi, Mine does that night and day.

Hi, You can ask for a blood volume test from your doctor.

Hi, I think it is worth trying one pair first and see how it goes. I know there is a big difference when I don't wear them, the stockings and the pantyhose. So believe you that they are more efficient that the 30-40 mm. I would like to have more pressure because my veins dilate instead of contracting so my problem is helped with compression.

Hi, He told me he was surprised I had low blood volume because he tought I was a fake case. He never apologised. He put on the first page of my medical file that I am a nut case. I asked him to change the diagnosis and he refused. So, I had to drop him off (he was p.o.) when I went to see Dr Grubb who gave me medication that decreased the syncopes. He told me to choose between him or Dr Grubb. The choice was not hard to make even if this doctor his 5 miles away and Dr Grubb 14 hours away one way. I also changed hospital because everytime I went there they would read the top sheet where it says ?Psychogenic? and would not treat me at all. It did not show as anemic because I lack both 1 liter of plasma and 1 liter of red blood cell. I am now on Procrit and am tested every month. It still does not show anything on a regular blood test. I had only volume test with the medication and it shows that I now lack 1 L of blood. So it proves that the medication is helpful in my case.

Hi, I have a very very very labile BP. It can go from 210/190 to 0 in 15 seconds which makes me faint. As far as I know, he only had done simple blood work (no catecholamines). So his decision to do a blood volume is because he knows that some patients with real (physical) syncope have also low blood volume. He wanted to prove that I was a fake but when I got tested it result showed that I lack 2 liters (40%) of my blood volume. He was dumbfound because he was sure I had not physical medical condition.

Hi, Thanks for the information on the higher compression hose. Presently I have 30-40 mm but 2 years ago I asked my sale lady for a higher compression and she told me it was dangerous. I will talk to my specialist about and give it a try if he agrees to it.

Hi, I was diagnosed with Psychogenic Sycope and POTS and my internist wanted to know if there was medical proof of a physical disorder. I have all the POTS symptoms listed on Dinet.

Hi, I had severe diarrhea and had to stop it after 2 days.

Hi, I am a massage therapist and I have had massages every week for years before I became disabled. I had POTS but was able to function relatively well. The only thing I can say is that you have to be careful when getting up because it can cause you to feel dizzy or faint. The reason is that massage dilates blood vessels. It also makes you urinate so you loose some blood volume.

Hi, I was diagnosed with hypoglycemia at age 17 with a 7 hour fasting test and glucose tolerance test.

Hi, I have a few specialist for the POTS one is the endocrinologist.

Hi Morgan, The medical community never stop to amaze me with their ignorance! I hope the new PM adjustement will make you feel better.

Hi, I do all the tricks and take my meds to avoid syncope. I barely can wash myself and do some cooking. I can't clean the house and work. I am disabled for life.

Hi Flop, This is exactly what I asked my doctor but her told me to find someone who already has written one and he would be ready to put it in my medicl file. So I hope someone will be able to help me.

Hi, Some people have POTS because their heart receptors are too sensitive. Others have too many receptors.

Hi everyone, I am wondering if there exist a medical protocol telling doctors how to treat us when we are in the hospital? There medical protocols for all known disorders. They tell the doctors step by step when they see a patient with this condition. I would appreciate if any of you have information on POTS or NCS protocol. Thanks