Ernie

Hi, I have a bad reaction to MSG. It makes me faint.

Hi, I had 8 TTTs and I did not get more info than I had after I did the ones at NIH. I did more than 12 postural catecholamine tests as a lab rat and those helped me. It also helps when they test my family members who have the disorder. This is where the fine tuning happens. But it's not the researcher who prescribes the med. It is my other doctors who find the medication.

Hi, I had a regular colonoscopy in 2001 which made me very sick. I think that it was partly due to the liquid I had to drink that causes diarrhea and dehydration and the second cause are the meds they gave me to sedate which caused vasodilation. I am wondering if the virtual colonoscopy is has good as the regular one especially if the doctor needs a biopsy. They can't do it in a virtual colonoscopy but maybe there is another way to find out. What is the advantage of one over the other? If the virtual colonoscopy is as good I would rather have that one because I don't have to go through the meds and the pain. Any experience or knowledge appreciated.

Hi, Thank you very much for the link. Dr Grubb has changed a lot since 2002. I guess all the suffering he has been through has put it's toll on him too!

Hi, Here we only get tested once, when we do. Then when we change doctors they ask for the files and they don't retest. It's a social medicine system and they want to save money as much as possible so they consider one test is enough. I had many other TTTs but as a rat lab not as a patient.

Hi, I would certainly try it. I have extremely high levels of NE in my blood and I take Cymbalta in low dose and it helps me. I am sure there are better solutions for us in the near future.

Hi Michelle, Thanks for the update. To Amy, I am sorry you are having such an ordeal. I was in that situation last year, in the hospital and fainting every time I stood up. I was bedridden for 3 months and the doctors gave up on me. I pleaded with them to rehab me and they accepted. It took 9 months to be able to take my shower again without fainting and I can now walk without fainting. Never give up. You can be a medical mystery also!

Hi, I have a CPAP.

Hi, I have the same problem and it's worst the worst my POTS is. Of course doctors don't know what to do!

Hi, What about going to the ER for rehydration!

Hi, I have POTS but I also have Supraventricular Tachycardia. I did not accept an ablation because it would have made my syncope worst.

Hi, I wear compression panties. Makes it easier when I wear my compression hoses.

Hi, I have those 24 hours a day, day and night. I need meds to sleep because of it. Dr Goldstein from NIH told me that it is caused by the extremely high adrenaline levels. It's not panic attack but caused by orthostatic intolerance.

Hi, I did not realise that EDS could cause such damage. I am so sorry that you have so much pain and medical issues.

Hi, I have had diarrhea for years. I was tested for food intolerance last year and I found out that I cannot eat fructose and lactose. So I avoid those and I am doing much better.

Hi, I was tested for Cushing and I don't have it. My father, who had POTS and NCS, was amputed of both legs due to gangrene and diabetes. On my father's side half his sibblings had diabetes and 3 of them losts their legs and one of his sister lost her 4 limbs.

Hi Julie I had the GTT test one year ago. The insulin was tested. My cortisol was tested very often and it is always high. I also have high cholesterol but I don't eat fat. My doctor told me it is genetic (again!!!). I am so thankful to my parents.

Hi, I have insuline resistance and high cortisol. They don't know what causes it.

Hi, I take a BB - Nadolol and Midrodine. They both help.

Hi, I have Hyperadrenergic POTS and I faint all the time. My EPI is over the moon and the NE is extremelly high. All my orthostatic hormones are off.

Hi, POTS is an increase of at least 30 bpm in 10 or less minutes. I have all the symptoms of POTS and all my 8 TTTs were positive in less than 15 seconds for POTS and less than 15 minutes for NCS.

Hi, I can't answer your specific answer but I know that when I have to stop my meds to do a test I get back to square one. This is very discouraging because I also hope that I would be better and that one day I could stop my medication. I am taking many meds and I am afraid that in the long run I will have problems with the side effects. So far so good. I hope it continues that way.

Hi Everyone, I just watched on Mystery Diagnosis the history of Linda Smith. I taped it on my hard disk and will bring it to the hospital to explain my disorder. It's nice to put a face on a name. I know her life was much more difficult than what was said on TV and she is a very courageous woman.

Hi, You can do a search on Mestinon as it's been discussed very often.

Hi, This is a double edge sword. Saying that we can control our syncopes, BP and HR may stop syncopes but doctors will also say that we trigger the syncopes. If we can do one we can do the other. Doctors are very fast to put the blame on us!