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Jen, given the aggressiveness of your autoimmune illness would it be possible to suppress your immune system and live in a sanitary environment and see if that might reset it? The ideas you have in my opinion wont significantly modulate the disease progress. However that is not to say that I think they can't be useful. They will be great coping mechanisms and ways to alleviate your pain but I have to side with your husband on this one that you need to stay with the mayo clinic doctors.

Mild constant symptoms for a few years. Then a temporary elevation for a few months that went away for a year. Then a gradual progression to max symptoms over the course of a few months. Then a VERY gradual decline (almost imperceptible, seems almost like constant symptoms) for 6 years. Now a significant decrease in baseline symptoms with daily (hourly) variation.

Spartan girl, I don't think you'll find a ttt on campus and I think in order to get officially diagnosed you have to go through a ttt exam. A local neurologist should know where to refer you to That said I can say from experience that aerobic endurance exercise has alleviated my symptoms of pots. In addition people with pots and fatigue tend to have sleep disorders, you could talk with your doctor about getting a sleep study done.

TXPOTS's additional exercise was stairmaster, elliptical, and weights.

I have cold sweaty palms anxiety disorders and mild symptoms all my life that became severe over the course of a few months (really accelerated over a period of a few weeks.) I don't have postural hypertension, but my bp elevates under stress, my serum epinephrine levels were normal in the sitting position. I also don't urinate from standing up. Additionally my ttt said I had abnormal adrenergic function. I have no access to specialized care that would be able to determine my subtype. I don't think Levine does this, I was just wondering from people who do know their subtype what they think and is it possible to have a pots that shares some components of hyperadrenergic pots but isn't?

6 miles good gosh. Are you noticing symptom improvement at that distance? I think there's also a component of time involved. One member here by the name of TXPOTS ran for 8 miles 4 times a week for a few months and then recovered from pots. She did other exercises as well.

I didn't think of dermatologists as dealing with muscle tension. Osteopathic medicine is heavily trained in dealing with those sorts of issues. You could talk about seeing an osteopath.

Good job Issie. How is everyone doing?

I told my cardiologist what to prescribe me. Ill let you digest that statement.

I think after a while even normal people will pass out from standing in one spot even with their knees unlocked. I remember watching a military tv show contest where they competed who could stand the longest.

Sonya it is true its going to be difficult to find a doctor to treat you be cause they don't teach dysautonomia in medical schools or residency. However we're a bunch of smart people ourselves and working together with doctors we can find things that can work. For me, endurance exercise has helped alleviate my symptoms quite significantly. Also vitamin d and lipoic acid has helped. It is simply not true that you can't improve, im doing better now than I did before and at times, significantly better.

Parkinsons wasn't mentioned in the long term follow up of people with effort syndrome. Some developed complications of high blood pressure but not in a frequency much different than the general population.

Lemons the feeling will not go away, that I can tell you fo' sho. I don't believe it is ingrained in the mind, but rather it is a physical response to elevated catecholamines or angiotensin ii. I'm not sure which or if even it's constrained to just those two. But one thing to note is that progressive muscle relaxation seems to provide a buffer from the feeling. It won't make it go away once it has started but if you do the exercise before the stressor you'll find that it takes longer for the feeling to hit you.

Jen reading your story has brought tears to my eyes. Im a fairly manly man too. Being called a medical enigma at mayo might make you feel isolated but we're still here for you and you shouldn't ever feel discouraged from venting. It's not a sign of weakness I see a lot of strength in the way you nonchalantly seem to riddle off a host of living conditions that no one I know could handle including myself. I wish I could suggest something. The only thing I can think of is stem cells but progress in that research isn't there yet. I did read an article that losartan was effective in treating connective tissue defects such as in marfans syndrome by reactivating a signaling protein to restore structural integrity to the connective tissue I have no idea if that could help you but it might be worth a shot. The autoimmune issues I have no idea what to say. Please hang in there and don't give up. Something brought you to this place and so if you take that path backwards you can get out. We're here for you Jen

Kimbellgirl none of the studies I read from the world war 1I era in effort syndrome (pots) mentioned parkinsons disease as a long term followup.

ive not heard of high interval training. I completely believe that you should do the exercises that you want to, that you enjoy and in the amount that is agreeable to you. Because then ultimately you're more likely to stick with the program and give yourself some much needed control back over your condition. For me im doing good with just keeping my jog pace slow and steady, but even then in the beginning my hr would get to 210 bpm. I don't think I could have handled high intensity anything.

I don't think dental issues are associated with pots but as others have said it can be with eds so which in a way might be a poor man's genetic test to check for eds if you also have pots.

Marti that's great that these medicines work for you so well. I remember an article posted earlier about oxidative stress associated with CFS, do you take any antioxidants? This idea about chronic viral infection/immune system activation is very interesting

I have a local gym that only charges 10 dollars a month and they're open like all the time. I just use their treadmills or elliptical.

Yes abbyw unfortunately it is true. The beneficial effects of exercise I believe is that it transiently lowers angiotensin ii levels. It is essentially like taking thyroid medicine (just acting on a different hormone) I notice the best feelings 0-6 hours from exercise. It begins to dwindle and if I go more than 2 days without exercising I begin to feel steadily worse. It's likely you will have to jog for the rest of your life.

Puppylove you could talk with your doctor about that. As for the blood pressure change remember that how you take the BP is important. Generally you want the arm flat and relaxed as if you tense the arm it can elevate the BP reading significantly. Additionally in weight lifters BP rises can go as high as 360/300 mmHg during maximal lifts without ill effects but you generally don't want your BP high for too long. Is there any types of worry that you have before the feelings of dread? If it is random it could be adrenal surges in which case hopefully a doctor would know how to treat it.

Walking for me did have its advantages, for instance it probably maintained me at a slightly higher functional level than I otherwise would have been. However, you're right in that it didn't do the job, the symptoms were still quite severe. I've worked my way up to about 40 minutes of jogging and I have found a loose connection to the distance run and the degree of functional improvement. Lately my symptoms have been fluctuating, but the baseline is always going down. There are times when I feel a complete remission from POTS, and my heart rate change reflects that. Just yesterday I went to the doctor's office and my HR change from supine to standing was only 7 bpm. Granted it went from 95 to 102 so I was already tachycardic, but the point is still there. Headaches, lightheadedness, hand tremors, and difficulty concentrating have all significantly improved. I'm still in the process of the exercise program though. And like I said, the symptoms and tachycardia will return on occasion. As for chest pain, you could talk with your doctor about that. I myself have always gotten sharp stabbing temporary pains during exercise that I usually just ignore. My doctor doesn't think it's heart related.

kimbellgirl, did you find the Losartan helped with the anxiety at all?

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I think it is unlikely there is one cause of pots given the diversity of presentations. However there is utility in making progress in any one pots patient subgroups be they low flow hyperadrenergic etc etc. Bevusse while the specific etiology is different it's likely to be centered around a central theme. I.e. a flaw at one end of the parasympathetic nervous system is creating a cascade somewhere else that leads to pots and everyones pots might come from different inciting instances but the cascades are largely similar somewhere along the line. And in knowing that that can be where therapy lies. From the other jogging study, 62% responded to exercise, but there was no difference between the responders and non responders in terms of norepinephrine, stroke volume, blood volume, or other relevant parameters. This suggests that for the responders perhaps exercise hit one level in the cascade chain or didn't need to as the cascade was started by one of these inciting factors. But in the non responders perhaps exercise didn't touch the true cascade inciting event which could be anything distended connective tissue, entrapped autonomic nerves, or malformed tenuous structures among other things. I really wish a n extensive study were funded to really go after the pathophysiology be cause I believe it is nit an impossible task and there are consistent enough physical symptoms to suggest good candidates and ideas.