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About toddm1960

  • Birthday 07/21/1960

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  1. I get these once every couple of months, the pain is terrible. Mine was found to be smooth muscle cramping in my esophagus and stomach. After one bad bout I ended up with a malrotated stomach, my transit times were very slow then. No one was able to say whether it is caused by dysautonomia or mitochondria problem. It's like having a huge muscle cramp in your quad right in the middle of your torso, it doubles me over everytime.
  2. Issy have you tried turmeric? Just curious with your reaction to Lorsartan. How is your supine BP? Is it only increased when standing or after activity? Lorsartan was the next drug I was going to push my doctor for, I'd like to hear from any others that have tried it also. Good luck, hope you feel better.
  3. jangle do a search on this, a year or two ago someone started this exact thread. You may get some good information from it, and any of you that posted on that thread jump back in and let us know how you're doing.
  4. I should have added that to Julie, mine only narrows when I stand. When I lay down it's back to normal. I wonder if these new studies that show dysautonomia patients with essential hypovolemia looked at pulse pressure. Do these patients have it all the time or only when standing?
  5. There have been past posts on this, but a narrow pulse pressure in a POTS patients may not be blood loss from trauma. But from hypovolemia, or at least thoracic hypovolemia. Many of us on the forum have this.
  6. I went for 8 months , never noticed any difference in any symptoms. I will say though I took awesome 30 minute naps with the soft sounds of music/running water in the back ground. I went through these treatments while I was still able to work, hoping to remain at work.......just didn't happen for me.
  7. I think there two reasons they've added "in absence of hypotension" First is for research, patients with orthostatic hypotension react very differently than people with orthostatic hypertension. This way they can study each group separately. Second is because many doctors still today think you can't have POTS if you don't pass out. Good luck at your appointment tomorrow Jen, let us know how it goes for you.
  8. That's the reason this group was put together, to update the last definition which had been in 1996. Doctors are all over the board on definitions and diagnosis, if they even know about dyysautonomia at all. I didn't post this to get anyone upset about their diagnosis, just more information out there.
  9. In March of this year the top experts in the field released this definition: http://www.ncbi.nlm.nih.gov/pubmed/21393070 Here is an overview of each: 2. Orthostatic hypotension 2.1. Definition Orthostatic hypotension is a sustained reduction of systolic blood pressure of at least 20 mm Hg or diastolic blood pressure of 10 mm Hg within 3 min of standing or head-up tilt to at least 60° on a tilt table. Orthostatic hypotension is a clinical sign and may be symptomatic or asymptomatic. In patients with supine hypertension, a reduction in systolic blood pressure of 30 mm Hg may be a more appropriate criterion for orthostatic hypotension because the magnitude of the orthostatic blood pressure fall is dependent on the baseline blood pressure. 3. Neurally mediated (reflex) syncope 3.1. Definitions 3.1.1. Syncope and transient loss of consciousness There are several different mechanisms that result in transient loss of consciousness. Causes may be traumatic or nontraumatic; the latter include syncope, epileptic seizures, metabolic disorders, and very rarely a transient ischemic attack in the posterior circulation. The term syncope indicates a specific pathophysiology and should only be used to describe a transient loss of consciousness and postural tone resulting from global cerebral hypoperfusion with spontaneous and complete recovery and no neurological sequelae. When the cause of unconsciousness is not clear the episode should not be called syncope. 4. Postural tachycardia syndrome 4.1. Definition The postural tachycardia syndrome (POTS) is characterized by a sustained heart rate increment of ≥ 30 beats/min within 10 min of standing or head-up tilt in the absence of orthostatic hypotension. The standing heart rate for all subjects is often ≥ 120 beats/min. These criteria may not be applicable for individuals with low resting heart rates. For individuals aged 12–19 years the required increment is at least 40 beats/min. The orthostatic tachycardia may be accompanied by symptoms of cerebral hypoperfusion and autonomic overactivity that are relieved by recumbency.
  10. I have these same pains, you're not alone at all with them. Not much advise about the pains, just try to relax as best you can. I've just come off 3 straight days of them, today is the first without any. The only think I'd add here is to stay away from cardiologists and find a neurologist familar with POTS or dysautonomia. Cardiologist stick too much to strict heart function, and with POTS there's much more going on. I'll add right now not EVERY cardiologist is like this, but if you can you're better servered finding a neuro to treat you.
  11. For as silly as this research sounds to us, it's new stuff for the medical community. This is what will draw more researchers and more research dollars.
  12. Funny you bring up this symptom, for the past 3 days I've had terrible tight chest. With sharp pains on both left and right sides directly under my pecs. It's not a new symptom for me, it's just maing an ugly return for a while I guess. Wish I could help you with what causes them, hope you feel better soon though.
  13. I didn't include the 1,000mg of niacin also. Before these my HR and BP just continued to rise as long as I was standing, my HR would be 60 laying downm then 110 when I would stand....then 130, 150, 170, 200. Same thing with my BP. Now on these I seem to top out around 150 and my BP doesnt get above 170/130.......unless I walk upstairs or lift something. The arginine and creatine are part of my mito cocktail, but I also got this small improvement in my autonomic symptoms. Just a side note on exercise, 6 years later I'm still trying and still waiting for any benefits. All its done for me is put me flat on my back 24 to 48 after doing it........it is like a chronic state of PEM or PENE. Glad it helps some but I can tell you it's done nothing for me.
  14. It's been 24 years for me, with two remissions lasting about 6 months each. For me it's been a slow and steady increase with each year worse than the last.
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