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I haven't really noticed a decrease in my memory. I do have a decrease in working memory (I memory for tasks that occurred seconds ago) because im half unconscious so its hard to focus on creating new memories. However depression can cause memory loss a.d quite significant amount as well. Aerobic exercise can treat both depression and pots. It treats depression by stimulating your body to regrow neurons in the hippocampus which is the region of the brain responsible for emotions and memory and is implicated in depression.

http://www.ncbi.nlm.nih.gov/pubmed/22314777 Found this kind of interesting.

Lemons might be able to help you more than I can. Sometimes you have to play rough with the insurance companies. I hope you can get this issue resolved, it just seems very weird that they'd approve you at one time and then take that away? I mean technically you are the patient of this doctor, I don't think they can just reject you at this point.

Issie that's really weird. I don't know what to say? It's like your body is better conditioned to move than to sit still, that is common to all of us. But definitely my heart rate increases with extra movement not decreases. I'm not sure, but I still think exercise would benefit you. Julie I don't necessarily feel more energy, but certainly I'm not too fatigued. The runner's high is always nice.

Julie, I'm the same way, I feel great after exercise and sometimes I even get near remission from my lightheaded symptoms. I think in our case maybe our POTS are more related to overactive sympathetic activation because you described you have anxiety symptoms with your POTS similar to me. And the exercise is likely "burning off" the excess norepinephrine and other sympathetic hormones, normalizing us somewhat. Cindeebee, my heart rate is now routinely at 200-210 for about 15 or so minutes of exercise. My cardiologist gave me the green light, but that's only because I don't get short of breath/fatigued during these heart rate intervals. But anyway you should definitely talk with your cardiologist if it's ok.

It's things like that that make me really really mad. Anorexia and Bulimia have very typical presentations, but when the person wants to eat and is involuntarily throwing up that is most definitely not on the axis of eating disorders. And it's just the accusation which tells you they're not taking you seriously. It's so frustrating, there really needs to be more research and training for dysautonomia conditions in this country because right now we're just sort of by ourselves.

I always wondered if there was a tailored version of exercises for POTS. I guess there's always the Levine program, but we're all so different. For me I don't really get fatigued after exercise.

Y'alls doctors are a lot more conservative than mine. I basically told my doctor I don't feel out of breath or tired even when my heart rate is 210. So he gave me the green light.

I'm not sure if he will or won't admit you but I'm sure he'll do what's in the best interest of your health. I'm not sure what causes the interruption in your swallow reflex. If I had to venture a guess it would be related to a connective tissue dysfunction similar to what is seen in CREST syndrome (The E in Crest is esophageal dysmotility) There might be some type of connective tissue overlap going on since POTS can have connective tissue issues as well. As for the nausea and other digestive issues all I can say is that for me it passed over a period of a few years. I have no doubt that your doctors will know what to do, unfortunately there's not really anything I can advise as I didn't really find anything that helped me during my bout of nausea. (Then again I didn't know I had POTS back then).

Julie, Octeotride is a good medicine but also you might be interested in this: (also in my case I know I'd have difficulty getting octeotride.) http://content.onlin.../full/34/4/1170 Granted the study population is different, but Dr. Stewart mentioned the similarity in sympathetic activation in POTS and maybe a lot of the same hormones are involved in sympathetic hyperactive disorders. Endurance training does seem to bring the hormones into balance. For them it was achieved with 40-70% oxygen uptake exercise. I believe it can work with us as well at around 60-70% oxygen exercise. I know for sure when I jog I can sit in a meeting longer without having the panic/anxiety responses and I'm feeling better now that I'm jogging for extended periods of time.

I will try my best, but I have literally no experience with the neuroendocrine system. There's a lot of subtleties involved that I will have to learn but it is not outside the scope of what I can do I believe. It will be fun and I do believe from the start that POTS is a neuroendocrine problem. Now what specific hormones are involved and in what ways to be determined.

Julie, I looked up somatostatin, and this I believe is a very interesting find. I tried looking up potential links between somatostatin and angiotensin ii, and so far the only relevant article I can find is this: http://www.ncbi.nlm.nih.gov/pubmed/6114434 Which doesn't necessarily have a strong connection, but I believe the reason the aldosterone is blocked is because the somatostatin is acting as a AT1 angiotensin ii receptor blocker. I read another study about the G-protein coupling and I don't think somatostatin acts on the G-protein AT2 angiotensin ii receptors which led me to that conclusion. It is interesting and completely correct that we have to look at the therapies that work to understand the pathophysiology better. Indeed, octreotide is essentially artifical somatostatin. The thing about Somatostatin is that it seems to be linked to many neuroendocrine pathways, that's why I'm looking only at its effects on angiotensin ii because that's the highest probability of the disease pathway that I can see but there could be hidden effects that are also contributing or entirely causing POTS. It will be interesting to research.

IceSkate, I don't think it was just anxiety, but certainly there could have been a component of anxiety - perhaps caused by the POTS itself. In terms of prevention I don't really have any experience because I'm still suffering from POTS, but I want to ask if your TTT was done while you were still symptomatic? Either way, they're just numbers, it's great if you're asymptomatic. I guess if I were looking at preventing a future POTS outbreak I would generally conduct myself as follows: 1.) I would eliminate stress as much as I can. For me, stress seems to bring on POTS episodes, and so I think one should take life a little bit easier than they normally would. I try not to put myself in a position where I am not enjoying my days and I use stress reduction techniques anywhere and everywhere I can. 2.) Aerobic exercise. This seems to have beneficial hormonal effects that are relevant to POTS. It seems to lower angiotensin ii levels, get rid of stress hormones cortisol and norepinephrine, and generally boosts mood. 3.) Vitamin D. Vitamin D is a great renin angiotensin aldosterone regulator and can have many other beneficial effects as well. These three things I listed in my own theoretical order of importance.

POTS can give you risk factors such as high blood pressure and sleep apnea which definitely need to be controlled.

The thing is I don't think its an arteriosclerotic issue with pots. They tend to have white matter hyperintensities on brain mri as well as microalbuminuria (protein in urine since the kidneys and brain are very similar vascularly) neither of which are commonly associated with pots. Though I do believe we have an incorrect hormonal or baroreceptive response to orthostatic stress.

It always seems like to treat an illness you have to expose your body to it so it can adapt. I think that's the whole theory with aerobic exercise. But what about just increasing standing time? Obviously you don't want to pass out but I wonder if we just stood up for prolonged periods of time of our bodies would compensate.

Trampolines are fun though, no doubt.

Ya I've also found studies that show angiotensin ii is related to anxiety symptoms. There was the study I posted earlier that aerobic exercise normalizes excessive angiotensin ii in the brain, I think I'm going that route before I try losartan.

Haha, ya I think we're going to have to run for the rest of our lives. Burn off the norepinephrine and other instigating hormones. Beats taking a pill though.

That's excellent, Issie. I'll have to read over these again and see if I can get these working for me as well. Thanks for the information.

It's definitely anxiety attacks. Or maybe perhaps vasovagal attacks without the syncope. (I do sigh A LOT) I don't get flushing which I think is preeminent in MCAD, also my excerbations occur during anxiety provoking situations like being forced to sit down in a classroom where I can't easily leave. I think with MCAD they're just random attacks. It has a lot of of the same feelings of an anxiety attack. I don't actually pass out and I've tried all sorts of things like the counter maneuvers or what not. Nothing really seems to help. Xanax helped a little bit (very little) actually it really didn't help at all, probably was just placebo effect. It's not much of an issue now since I graduated. Hopefully with exercise I'll get better in this department.

Julie as a heads up I can absolutely not tolerate ssris. I don't think this is common amongst pots patients they seem to help but for me they give me weird side effects that aren't even listed. Example: my heart starts to flutter in a way that isn't pots related. Those palpitations my doctor told me can't be caused by them but when I stop the drugs every time the palpitations go away.

I believe that is true julie. I've had my optic fundi checked and there isn't any evidence of hypertensive retinopathy which I believe correlates to normal cerebral vascular system since your retina is under the same autoregulation as the rest of your central nervous system. Still it is odd. My bp sitting is like 115/70. Odd to think I can be hypertensive.

Woa Martiz, please contact your doctor before taking any medications. Dr. Stewart sent me a message that aldactone could actually have a negative effect in POTS so please contact your doctor. To be honest with you this scares me because I don't want people taking aldactone based off my advice. I have absolutely no idea how it might work and I wouldn't want anyone getting hurt on my behalf. There are other ways to block angiotensin ii. One of them is with Losartan which I have been talking with my doctor and he is willing to try me on. But right now I'm trying exercise and if I don't respond to exercise I'll try the Losartan. Exercise itself has been shown to boost ACE2 levels and reduce angiotensin ii btw.

futurehope that was what I was thinking. I was in a more safe position because I wasn't the one pulling the parachute, I went with a trainer. But I could imagine someone with undiagnosed POTS maybe trying for a solo jump (my friends were egging me on to do this - and I almost considered it) That'd be really bad.