Guest guest Posted May 5, 1999 Report Share Posted May 5, 1999 Hi April and all, thanks for interesting info, but I am afraid I must have missed something. I read it several times but still do not understand what is the difference between POTS and NMH...I supposed it is the same but the articles say it is not...but the tests seem to be identical??? I am really confused. Stania I have another question - I remember somebody mentioned L-Glutamine - it is now available here too but i don't know what is it good for. Have a nice day! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 1999 Report Share Posted May 5, 1999 Stania, You wrote: thanks for interesting info, but I am afraid I must have missed = something. I read it several times but still do not understand what is = the difference between POTS and NMH...I supposed it is the same but the = articles say it is not...but the tests seem to be identical??? I am = really confused. I don't understand the difference, either. The testing seems a bit different (though awfully similar, too). Perhaps the different tests yield different populations that test positive, and those different positives are classified as either NMH or POTS. What do you think, Gail? April ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 1999 Report Share Posted May 5, 1999 In a message dated 5/5/99 6:03:32 PM Eastern Daylight Time, tyree.pines@... writes: << hose different positives are classified as either NMH or POTS. What do you think, Gail? >> That's right. Both NMH (neurally mediatiated hypotension) and POTS are part of disautonomia but slightly different classifications. According to the book I saw of Dr. Streeten's, there were different ones in the teens but don't ask me to name them all!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 More info: http://www.ourfm-cfidsworld.org/html/john_hopkins_information.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 I passed out at 27 minutes with no measurable blood pressure. I began eating 3 teaspoons of salt a day which helped a lot. Now I take Recuperation, and I think it is the amazing fix - just what I needed. a Carnes > > How many people here have experience with the Tilt Table Test used by > Hopkins to diagnose CFS? > > Do any of you receive meds or consume lots of water and salt? Does it > help? > > http://www.geocities.com/cfsdays/hopkins.htm > > I definitely have NMH (Neurally Mediated Hypotension), and in fact > this was my first ever symptom back when I was 11: > > Shortly after my surgery, I would start having " near blackouts " in the > bath (hot water). Then, when I started back at school, I had " near > blackouts " in morning assembly when I had to stand in one place, and I > often had to excuse myself. Of course, the teachers thought I just > didn't like listening to religious songs and boring announcements :-) > > Thanks, > Kat. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 Hi, I haven't had a TTT but was told I have OI. I used to pass out a lot, especially after getting out of a car or getting up from a chair. Even sat down I could pass out because my BP was so low. It was measured at 60/40 by a dr when I was on the floor after passing out. I took extra salt but it took a long time for it to make a difference. I Did not do well on florinef. FIR sauna has helped my balance tremendously and appears to have helped raise my BP. Like a, I take recup now and it's great. Jan (Australia) pjeanneus <pj7@...> wrote: I passed out at 27 minutes with no measurable blood pressure. I began eating 3 teaspoons of salt a day which helped a lot. Now I take Recuperation, and I think it is the amazing fix - just what I needed. a Carnes > > How many people here have experience with the Tilt Table Test used by > Hopkins to diagnose CFS? > > Do any of you receive meds or consume lots of water and salt? Does it > help? > > http://www.geocities.com/cfsdays/hopkins.htm > > I definitely have NMH (Neurally Mediated Hypotension), and in fact > this was my first ever symptom back when I was 11: > > Shortly after my surgery, I would start having " near blackouts " in the > bath (hot water). Then, when I started back at school, I had " near > blackouts " in morning assembly when I had to stand in one place, and I > often had to excuse myself. Of course, the teachers thought I just > didn't like listening to religious songs and boring announcements :-) > > Thanks, > Kat. > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 Hi a, Thanks for your information. What is 'Recuperation'? Could you provide a link to it? Thanks very much, Katrina. > > I passed out at 27 minutes with no measurable blood pressure. I > began eating 3 teaspoons of salt a day which helped a lot. Now I > take Recuperation, and I think it is the amazing fix - just what I > needed. > > a Carnes > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 Hi Kat, I was evaluated for NMH by my PCP in 1995. He did what is called " the poor man's tilt table test " in his office. I'm sure this is described " somewhere " . It is taking the blood pressure after sitting, standing for various times etc. With those results, the s Hopkins info, and clinical sx, he put me on Florinef. After 4 years mainly bedridden, brain- like-a-mudslide, it enabled me to stand up longer, and better hold a conversation, and other things. The 1st week was a little speedy, and I over-did it. I also upped the salt and water, which helped alot. I was always concerned with long term side effects of Florinef. But have never had enough info to know how to replace it. Dr. Cheney says I may now not be able to go off of it. (Anytime I tried over the years, results disastrous) Hydralyte (Gookinaid) also helps alot, especially in the heat, drinking it ice-cold. It has taken me from a near faint, very quickly, many times. Apparently, iced drinks do raise BP, and certainly do feel like they do. The tips for sitting and standing in your article are also invaluable. I now know I have CFS-related Cardiomyopathy, and some tools are the same. NEVER stand still, especially in the heat! Pacing, fidgeting, jiggling feet are good. Keep them up when sitting...rotate ankles. Massage, especially around ankles..priceless. I have to be careful with the water, salt thing now, w/Cardiomyopathy (and age?). Still working that out. The TTT puts the Fear of God in me. Not only for horrid feeling it provokes in NMH, but because of relapse after, and possible long term damage reported by some CFS patients. I did nearly do it at the Mayo Clinic, but it was canceled...maybe a good thing. So, keep researching and decide carefully...good luck! Katrina > > How many people here have experience with the Tilt Table Test used by > Hopkins to diagnose CFS? > > Do any of you receive meds or consume lots of water and salt? Does it > help? > > http://www.geocities.com/cfsdays/hopkins.htm > > I definitely have NMH (Neurally Mediated Hypotension), and in fact > this was my first ever symptom back when I was 11: > > Shortly after my surgery, I would start having " near blackouts " in the > bath (hot water). Then, when I started back at school, I had " near > blackouts " in morning assembly when I had to stand in one place, and I > often had to excuse myself. Of course, the teachers thought I just > didn't like listening to religious songs and boring announcements :-) > > Thanks, > Kat. > Quote Link to comment Share on other sites More sharing options...
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