julieph85

He said the norepinephrine related peripheral constriction is a compensatory reaction to the vasodilation in the gut. So if you constrict the gut with something like octreotide it should lower the sympathetic activity. Which according to a lot of folks it does work. I believe corina has had a lot of success with it

I do the recumbent bike for 20 minutes 5 days a week and it makes me feel real tired after but also more relaxed and it helps with the shortness of breath.

My doc said we are overly constricted in our arteries but too dilated in our veins so that is why some of us experience the peripheral constriction- the norepinephrine is being over produced to counteract the venous dilation in our gut. Norepinephrine is a potent peripheral artery constrictor. He said we need to think of it in terms of arteries and veins. The veins are too dilated and the arteries are too constricted.

Same thing happens to me regularly. I really have no idea when I wake up in the morning what my heart rate is going to be like that day. Sometimes my standing heart rate will be in the 70's but I will still feel short of beeath and dizzy which doesn't make sense.

I also have severe neck pain and slump all the time. I know I do not have Chiari malformation but I have RA so it is possible there is something wrong with my neck. It cracks real bad.

I agree issie

I haven't been diagnosed with it but I suspect I have it. I also have a huge number of fascitulations that occur if I move my muscles

Ive read a few different places that salt loading should not be a treatment for hyperandrenergic pots and should only be done with hypovolemic pots. I have been diagnosed with hyper pots so why am I being told to salt load?? I'm confused now

Green, I'll be the devils advocate here. I basically agree with everything you said. I'm not a fan of eastern medicines because of the reasons you stated. I do however feel that they probably do work for some people, and I don't think there is anything wrong with trying them and who knows, they probably do give some people a lot of benefit. I just feel like you do in that a huge percentage of the relief people feel is most likely placebo effect and it is also nearly impossible to treat yourself appropriately with them because most of us have no real idea of what type of pots we have.

I am freezing cold all morning long. I sit with a space heater at work blasting me in the face all year long even in the summer. The weird thing with me is I warm up at night. I've noticed that I'm extremely peripherally constructed in the morning, my hands and feet turn white and I'm freezing cold, but then in the evening my blood starts pooling in my extremities and I warm up. I think it is related to high norepinephrine levels causing peripheral vasoconstriction.

My rheumy told me they can only test me for common autoimmune stuff. They will not test for pots antibodies, which I'm assuming is what you were looking for. You would have to go to a really specialized pots place for that, like mayo or vandy

I completely agree with you about the over sensitization. The anxiety+zoloft combo seemed to make me hypervigilant which I assume made my body go into a similar state. Therefore my body overreacts to any time of stimulation. Would a hot shower/bath typically stimulate some catecholamine release in a normal person because I get very tachy from that as well even though it was never a problem previously? My only thought as this point is to attempt a trial of cymbalta. What I have read online suggests that it works to desensitize serotonin 1a and beta adrenergic receptors. I have tolerated the beta blocker well with few side effects and it seems to help but definitely not enough.

The shower will def cause catecholamine release because the heat lowers your Bp. Even normal ppl get a little tachy in the shower because of this other times catecholamines are released that you may notice symptoms- exercise, after eating carbohydrates, upon first waking, when initially standing up, when raising arms over your head, any time your Baro reflex is triggered, any time a vagal maneuver is performed, any time you are nervous

It definitely sounds like the Zoloft triggered this and unfortunately you may never know why. It also sounds like sympathetic over activation which is what a lot of us hyper pots experience. How have you done with the beta blocker? I have hyper pots and cannot tolerate beta blockers at all as they make my dizziness and orthostatic hypertension worse. I don't think the Doc is completely off because you said you do suffer from an anxiety disorder but he does need to acknowledge the orthostatic symptoms as they are NOT related to your run of the mill Anx disorder. Because I also have a comorbid anxiety problem doctors have also blamed my pots on that as well. I have a personal theory on ppl that present as hyper sympathetic pots but it Is just my theory so it's a take it or leave it kind of thing. I think that what I have and what a few others have is not dysautonomia. In fact my Ans is functioning great which has been proven through autonomic testing. I think some of us have a yet un-named condition that causes excess sensitivity to catecholamines. Every situation that you describe getting tachy and dizzy in is a normal time to have a catecholamine release. It is as if the body is too sensitive to it and is over constricting in response. I think it is a disorder of primary over sensitization of the SNS and that's it, not pooling, hypovolemia, dysautonomia, or vasodilation and I think it is a problem with serotonin. I could be waaay wrong, but it is just how I feel about my own body and what a few others have described. Good luck with everything and I think the tilt is definitely necessary for you

That's so interesting sue and really thought out. I feel really bad for those volunteers though. I hope they don't come out of that with orthostatic intolerance. Laying in bed for weeks in the head down position is what triggered my pots! I'm thinking maybe they are craving the capsaicin in the spicy foods. It is an antagonist of several vasoactive peptides in the body. I'm wondering if it has nothing to do with the loss of smell but instead with the activation of RAS brought on by the fluid shift

That is my symptoms as well- I also shake all over as I'm waking up. Did you have any orthostatic intolerance prior to the Zoloft? Also, do you experience shortness of breath with the tachy when standing? Sorry for all the questions, I'm just trying to help you figure it out and compare it to my own symptoms. I'm sorry you are in this situation. I'm also young with pots and it has ruined my mid twenties to say the least

It definitely sounds like you have the symptoms of hyper pots ( which you don't have to have high catecholamines to have). I have very similar symptoms to yours and I also have generalized anxiety disorder and had panic disorder as a teenager. I've never heard of an SSRI causing pots but you said you think you had dysautonomia prior to the SSRI? What were your symptoms? How long did you stay on the Zoloft after it causing the pots symptoms?

I'm sorry you are also going through this. What a horrible thing to feel so out of breath from stretching my back! There has got to be some sort of explanation. I also get it from talking as well. You know I've read stuff about Baro reflex failure and I've been checked for that and don't have it but I've never heard of Baro reflex hypersensitivity which is what I feel like I experience. It is like mine is under a hair trigger and it way over shoots. I also experience this on my carotids as well. Tilting my head back causes a huge decrease in Bp and heart rate that is way over proportionate. Has anyone ever heard of a hyper sensitive Baro reflex? I can't find anything about it

Whenever my symptoms are bad I get short of breath and tachy from even minor muscle movements and my muscles feel strange. I get this feeling all over my body of extreme muscle weakness and a burning type lactic acid pain in my arms, chest, and face. Whenever I move my muscles I get a big increase in hr and shortness of breath that lasts about 10 seconds. Some examples are stretching, leaning forward when I'm in a sitting position, reaching for something with my arm, or taking a deep breath. I've noticed that it is related to the stretching of my muscles. Mostly the muscles in my abdomen, chest, and upper back. These are also the muscles that feel weird and burn as well. The feeling I get when I move these muscles is the same feeling I get when I first stand up so I know it is some sort of sympathetic BP type thing. Does anyone else experience such drastic responses to minor body movements? What could possibly be causing this? I feel like it is interesting that by muscles burn and feel very weak at the same time.

Here's to being one of the lucky 200,000!

Mine also feels puffy and it starts about 20 to 30 minutes after getting out of bed. It almost feels like all the muscles in my head and neck are tight and it gives me a weird headache. It also gives me a sensation of wanting to clench my teeth

Yes I have that exact problem. Horrible pain in back of neck and at base of skull. It feels like pressure mixed with pain. I also get very lightheaded with it and the muscles in my face feel tired and burn from lactic acid. It is weird!

I often think about taking TNF alpha blockers for AS and my Rheumy has been pushing me for years to take these but my major concern is if they have a negative effect on POTS. Its more likely they would improve POTS but in some AS patients they can trigger MS and if they made my POTS worse id be pretty annoyed as its more a problem for me than AS.

Me too. My rheumy has been pushing enbrel for years but my fear is lymphoma. One day I will have to take it though because I have pretty bad RA and already have joint damage in my hands. I have also thought maybe the chronic inflammation is causing my pots but the pots started for me when my RA was in complete remission (pregnancy). So that doesn't make sense to me and lead me to think it is a separate disorder. Also I have noticeable red, swollen, and stiff joints all over my body and some days I get a low grade fever because the inflammation is so bad in my body yet I always have a normal sed rate and crp.

Sorry to hear that Rama, you know you have sympathy from me! My RA has also been especially bad lately so maybe the pots will go onto remission for a whole. I'm like you in that I would take RA any day over this POts. Pain for me is a lot easier to take than the shortness of breath and tachy.

OOOPS! here you go

http://www.nih.gov/researchmatters/august2011/08082011serotonin.htm

http://www.nih.gov/researchmatters/august2011/08082011serotonin.htm

Temperature control and breathing

Common problems in what familiar disease???