heiseygirl

I also have had pain down my arm tingling and pain up my jaw. I had heart tests but nothing showed up except slight mitral valve. All my dads male relatives have died from sudden death including my cousin who died 5 years ago from this. With neurocardiogenic syncope I know I am at greater risk for this. My dad has a pacemaker and then he got a defibrilator he has congestive heart failure with only 20% output in his heart and now is having pulmonary problems. I have more symptoms of congestive heart failure then my dad. His chf DR. said he wouldn't touch my case with a ten foot pole. I get so discouraged especially when my insurance wont pay for me to see Dr. Khruna because he is not in my network. My cardiologist and neurologist both wrote in and they wont approve it. I saw him 2xs and loved him. He now wants to do tests but if anything would happen or show up during ,my insurance wont pay.

Ihave pots and nerocardiogenic syncope. I get terrible chest pain some time. It feels like a cement block is on it and like it is being twisted.Do others get this and what do you do. My cardiologist doesn't know why I have this.

Oh Willows!!

I wish I could help.

I can tell you a bit about the petechiae and how it applies to me. I don't know if it is applicable to you or not but maybe something in it might help......

I have an undiagnosed autoimmune disorder (which probably caused my dysautonomia issues).

Many years ago, before they knew it was autoimmune, I had ITP (idiopathic thrombocytopenia purpurea) which is a drop in platelets. One of the symptoms is petechiae. (platelets help clot the blood to stop bleeding) I saw a top hematologist in Toronto who could not figure out my platelet problem. (Lupus-an autoimmune disease was also ruled out at this time). Even though my platelets came back up to within normal levels, I still continued to have outbreaks in petechiae (along with bleeding problems)

About three years ago, after a bout of rectal bleeding (and my platelets remaining in the normal range) I was tested for Von Willebrand's disease. Now, this is a hereditary disease and I have no family history of this but rarely it can be 'aquired'. You can 'google' it under 'Aquired Von Willebrand' This has to do with clotting factors or lack of. I have too much (again very rare) of factor X1, which disrupts the clotting cascade. (Hemaphelia is lack of factor V111) My doctors believe my problem is caused by the autoimmune disorder which is disrupting the clotting factors. Hence the petechiae.

Most days, I have no problems with it. But if my autoimmune problem is active (and I can tell by the petechiae) I have to be more careful - not a good day to get run over by a bus...... Cuts bleed for longer periods of time and even having blood drawn can leave a bit of a mess if constant pressure is not applied.

Willows, I have no idea if this applies to you or not, but, if your doctor is stumped and looking for suggestions.....he/she might want to look into the autoimmune angle and test your clotting factors. Oh, and just to make it more interesting, clotting factors can be in the normal range but not be working properly (I think this applies to factor V111 - but I am not sure.)

The only medication I know of that helps is prednisone for when the autoimmune issue is active. I haven't taken any in years though because I don't like the side effects. The petechiae and bleeding is just something I put up with. Pain in the behind but so is everything else about this disorder.......

Maybe worth a shot to ask your doctor about?????

Good luck and please keep us updated

Maggs

Have any of you had alot of weight gain since getting sick? I started having symptoms about 51/2 years ago. has been about 2 1/2 years ago been diagnosed with POTS and neurocardgenic syncope. Have gained a total of 40 lbs. Had 4 months that were progresionally getting better to days that I felt better than I ever remember feeling. Have now back slid again. Not to where I started but not good. How to you handle going back when you have felt so good. It *****. How can I get rid of the swelling and weight gain?

The single most important thing I have done for my POTS is take large daily doses of thiamine. I went from contemplating applying for disability to being nearly normal within a few days of starting thiamine supplementation. As one of my neighbors put it, "You went from blue to pink!" I've since added other B vitamins and magnesium glycinate to my daily regimen. I had been taking magnesium oxide, but a friend of mine told me that her doctor recommended magnesium glycinate to her because of her migraines. I forgot to take my magnesium glycinate on Friday night and woke up on Saturday morning with the first migraine I'd had in months.

The things that have helped me are all things that are recommended for people who have mitochondrial problems, which would explain a lot. Your mitochondria are responsible for using oxygen to release the energy from sugars and fats into a form that your cells can use. If they aren't working properly, your cells have to rely on anaerobic (without oxygen) methods of extracting energy from fuels. These are inefficient and lead to the production of lactic acid, which is what makes your muscles sore after strenuous exercise. Right before I started with the thiamine, I had an exercise stress test, which showed that I had an "appallingly low" anaerobic threshold, which the exercise physiologist attributed to lack of exercise. I think she had it backward. I had exercise intolerance because of my low anaerobic threshold, which was remedied within a few days of starting thiamine supplementation. If I stop taking the thiamine, as I did to humor one of my doctors, I got very sick again within 2 days.

I'm a medical copyeditor, and I copyedited several nutrition books about 20 years ago. Back then, the conventional wisdom was that unless you had classic signs of a deficiency disease (e.g., pellagra or beriberi), then there was no evidence that vitamin supplements above the recommended daily allowances would do you a lick of good. So it's likely that most doctors will dismiss any discussion of vitamins as "health faddism." I would be willing to go off my thiamine, and everything else, and go through all sorts of nasty tests, if some scientist would be willing to make use of the resulting data.

Does anyone have problems with major constipation that nothing will help? Even what I got at the ER hasnt helped and they are not up to date on Pots, the nurse asked me what it is.