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I got a call today at work from my teenager who felt ill at school and needed to be picked up. It wasn't a "problem" my husband was able to drive us over there and back home. But I noticed that my body was shaking and racing even though I didn't "feel nervous" about the disruption.

In general though I think I really just can't handle STRESS, no matter how small or insignificant it seems. Any change in routine seems to throw my whole system off.

I happened to have a follow up appointment with my cardiologist today and asked him about it. I said it feels like my autonomic nervous system "over-reacts" under stress. And he agreed but said that it really wasn't my ANS as a whole but rather my "receptors". He said, if we had looked at my adrenaline level during the car ride to the highschool, my lab work would have been normal. Instead it was my receptors that were being over-reactive. Wish I knew what receptors he was talking about and I probably would have continued to ask, but I know he is busy with pace-maker patients and "real emergencies". So I left it at that.

He looked up at me before he left the room and said something like "POTS is so frustrating for doctors, " I shot him a raised eyebrow and he added "oh and patients too. Bbecause we really don't know what to do for you. And that's hard for us." I smiled and knew he was sincere and that's all that really mattered at that moment.

EM

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EM, I have the same thing happen to me sometimes--even when it's "good" stress, like being happy/excited. It feels kind of like a whole body tremor/shivering that dies down on it's own. I'm not sure if it's a receptor issue, an overproduction of neurotransmitter issue, or a combo of both. I'm not certain that the docs fully understand that yet either... hence all the research still going on regarding POTS.

Sounds like your doc is a keeper in that he's honest about his own frustration while acknowledging your day-to-day reality as well. ;) Nina

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Guest Julia

I know what you mean. Even good stress. When I play cards and get excited--i'll feel my body tremor---and i'll even feel a little flu like if I over do the excitement.

It's is the weirdest thing in the world---to get so undone just from a little excitement. Bad stress wipes me out completely.

Julie :0) :D

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:) my doctor says our sympathetic nervous system is very sensitive and can be overstimulated very easily. He says that's why I end up with migraines sometimes and to "try to control my stress level" :P If anyone can figure out how to do that with a pre-teen girl in the house let me know "k"? :D I take zoloft to help a little but I know I need to learn to stay calm.....not something I'm good at any way!! :rolleyes:
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I am so glad somebody brought this up...thanks EarthMother and others here for posting about this.

I have noticed, and it is embarrasing, but intimate time with my husband, which I would consider normal healthy excitement sometimes causes this trembling. I was afraid to bring it up because I didn't want to offend anybody or be so personal. The point is, I have noticed too that it takes little bad stress to cause this feeling that feels like my body is over-excited (like cleaning the house and when I'm typing for my job) and of course truly stressful events like finances or bad news, etc., and it takes as little good stress to stimulate it the same way sometimes also.

At Christmas, I was still in the beginning of what would be what I consider now to be my recovery (judging on how far I've come...yet not 100% evidently) and just visiting with my family and the noise of the conversation and the flurry of the activity in the house...it made me feel like I was rattling inside. My mind felt like it was racing and I felt a little jittery even though I was thoroughly enjoying myself...I was aware of this inner shaking-like feeling. It has gotten much better but I find I cannot multi-task as much as I used to without becoming overwhelmed and also that I can push myself through my day, get up and clean and work, etc., but the more I do, the more relaxation and time it takes for my body to settle down. I honestly thought it was possibly related to my anxiety medication, but looking back even a few years ago I can remember having a trembling sensation in my body right before my period would start so given that realization, I don't truly believe it is the medicine since I experienced manifestations of this sensation way before.

Sometimes in the morning when I first wake up I feel trembly and I feel better after I take my beta blocker and my small dose of Xanax...I mentioned it to my husband and he said "it is called addiction" (he is a loving man but he has much difficulty accepting all of this, as I have at many times myself and he is so much like me in being against taking medication of that kind...however, I am learning to accept it as reality right now...it just seems to keep my body calmed down...not my mind usually, but my body actually), but anyway, I didn't appreciate that comment and I know he just doesn't understand. For a second I again worried maybe he was right and it is the medicine, but I truly can only imagine what my body would be doing without the meds.

I think also that you have a wonderful supportive and honest doctor. He certainly does sound like a keeper I agree with Nina. I respect anybody who can say this is the best we understand it and take the time to explain at least what he does know. Thanks for sharing this. If you get more information about the receptors, etc. please do share it.

For Denabob, I agree, if somebody figures out how to avoid stress, please share. The fact is good and bad stress is a daily part of all of our lives....to avoid it would be to not live in a way. I have a 20-year-old son living with me and if somebody can figure out how to make that less stressful I'd love to know the secret! :D I don't know about anybody else, but to me, in my experience, my son has brought me some of the greatest joys in life I'll ever know but also some of the most stress and worry and sometimes sorrow and disappointment that I think I'll ever know. Such is what comes from loving somebody so much I think.

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"He said, if we had looked at my adrenaline level during the car ride to the highschool, my lab work would have been normal."

This is precisely my situation, too. In fact, I have had my adrenaline levels tested numerous times (via blood and 24-hour urine screens, as part of a workup for pheochromocytoma, an adrenaline producing tumor), in the middle of feeling very symptomatic, and the levels are always normal. My doctor explained the situaton very much like yours did. Our systems generate ABNORMAL responses to NORMAL levels of adrenaline - probably because of the hyper-reactivity of the receptors in our sympathetic nervous system. (In the case of pheo, the body is reacting NORMALLY to ABNORMALLY high levels of adrenaline.)

I suppose that's why beta blockers are sometimes useful - they don't reduce adenaline levels, but rather reduce the receptivity of our systems to it.

Anyway, just wanted you to know you're not alone!

Hope you're feeling well today!

RunnerGirl

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Runnergirl, I'm so glad you explained it as you did, "an abnormal response to normal levels of adrenaline" because that's EXACTLY what it feels like to me. I do not get the tremors, but I DO react abnormally to everything normal. Normal levels of activity wear me out, anything out of the ordinary wears me out, a change in routine, an unexpeced visitor, less sleep, being hungry, an illness, a new pill to try, you name it, I overreact. Now I know how to explain it to somebody who doesn't understand. I certainly think this has something to do with my ability to get fatigued under "normal" circumstances. Is there a physiological basis for this? Can one be tested for this?

For some of you that are on benzodiazepines (like xanax and ativan), I've been on them in the past and I did notice after awhile of being on them (usually about 1 month), I did get "rebound" anxiety reactions which would go away upon taking the pill. I also noticed that I'd need more of it than I was taking to "do the trick". Now I'm NOT saying to discontinue your pills. I'm sure those pills would help me feel better too if I took them. I'm just mentioning this IN CASE you are having the same reaction as I used to when taking them.

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Guest tearose

Hope your teenager is feeling better EM. My teen got a stomach virus last week, it took him two days to recover from the 24 hour virus! That feeling when you get the call during the "school day" is still fresh in my mind and all my nerve endings!

I threw out the word stress years ago. Since everyone used it for many different things it didn't seem to explain adequately what we go through. It was my way of dealing with all those who overuse the word and undercare for the many other symptoms that POTS encompasses. I wanted to honor my struggle with more than the word stress. It reallly helped me feel better too. I only use the stress word for the emotional strains I feel after something like a death. Much in my style of trying to deal with things in a positive spin, I declare my situation more like "health challenges" and "physical limitations". My favorite when dealiing with the shakes that follow the rush of norepinephrine is to say something like " I oscillate at a high frequency". It gives others who are listening, a chance to inquire for more information if they really want to. This works for me.

As for the way my particular funky body responds...I have denervation in my legs and splanchnic area (torso) so when I stand the blood pools, my blood pressure drops, and then I dump norepinepherine to make the heart go faster and get blood/oxygen to my brain. So, what I have is a normal response to an abnormal condition!

Take care all, tearose

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Futurehope...I did have rebound anxiety to Ativan (that was initially given to me at the ER where a nurse literally scared me into taking it in the first place when I've always been more afraid to take something than not...she said I would truly have a heart attack and she has seen it happen....it was the old "anxiety diagnosis" and ignorance on her part (and my foolishness and desperation) but that is water under the bridge now...but anyway the rebound anxiety was to the point that I went and found a psychiatrist to help me get off of it because nobody was doing anything for me. Of course and possibly unfortunately, I ended up on Xanax but I have not had any of the same reactions to it as I did to Ativan. How did you stop taking any of them (i.e. cold turkey?) and are you taking antidepressants or anything else instead? I think they are all horrible meds (benzos and antidepressants) though they work great for many people but I desire not to take any of them but I'm afraid I'll end up where I was last summer totally not functioning so I'm taking this risk....I'm so equally afraid of all the psych meds it isn't funny.

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