mvdula

Tessa - Thanks so much for the info link. I am calling my old endo AGAIN to get them to give me ALL the #s from my stim test. If they look off, I will be going to a different endo....

have not had aldosterone testing - what is aldosterone and what would be symptoms of insufficiency? (i am quite normal as far as periods, etc)

Thanks - had cortisol and ACTH stim tests. Cortisol was somewhat low in morn back in November (but in normal range) - so they did stim test, which they said was normal and ruled out adrenal insufficiency. I have called the endo since then to say many times I feel this is endo/metabolic related. He says tests normal (thyroid also normal) and is not at all interested. Maybe this new GP will recommend a good endo. Thanks though - this is probably the track I should be on....

OK, this is so frustrating. I just end up crying after these episodes happen. Keep trying to figure this out and need an idea on where to turn! Here's today's example: my ice tray overflows often...so, lots of ice falls out when I open freezer. So, I was saying - come on kids, pick up all the ice - then I got the overloaded tray out and began (quickly) putting it into bowls so I could clean out the tray and put it back in. Not exactly a super-aerobic activity. But I was hurrying and it was intense I suppose. (This also happens often when dinner is almost ready and I am moving quickly to get things out of oven, etc). SUDDENLY, I have this hot flash (with possible other components of my episodes - little weakness, etc). I recognize it immediately - I do NOT have to sit or lie down - I have to slow down and get cooler - all I did today was slow down and then in a minute walk around (walking helps me) and move into another room. It was over in a few minutes - but left me crying bc I canNOT figure this out! It makes no sense! PLEASE - need advice and idea on where to turn. I am going to see a new GP soon - (very good GP with many awards and highly recommended) to get an opinion on what he thinks this could be (other than POTS)........

Yes, seems to me too that I must have had a disposition. I wonder though - since the a large % of POTS patients are young and of child-bearing age. According to Dr Grubb's office and much that I have read, postpartum is one of the onset times for POTS...just makes me think...

Thanks. It is just all very strange. Today I had a very short 'episode' after arriving at a friend's house. Suddenly felt hot and just very wrong (can't describe any other specific symptom - just that I feel in danger). It passed in a couple minutes - somewhat like panic attack. This has happened so many times before though - especially once I get in from the cold and stop/sit down - suddenly feel overheated and not right. This is still nothing like my super-episodes if I do too much physically....

I am still trying to figure this out - obviously. Although I had lots of palps and some fatigue during pregnancy, I had NO problems with heat or exercise. My real problems started postpartum - I breastfed (which I think delayed my symptoms), so things started as I cut down nursing and had a super-onset about 13-14 months postpartum after weaning. I had a VERY bad reaction to the epidural. I have had 2 before with no problem. This time, I soon felt very hot, anxious, arms dead-feeling but they worked fine, just a nightmare - so they monitored my vitals (which they said were fine), and watched and worried about me a lot - and gave me benadryl. Basically a 2hour nightmare for med to wear off - at which point I actually had the baby. not fun. When he (apparently a very good anesthesiologist with lots of experience) administered the epidural, he 'tested' it by doing something and asking me if I felt an electric shock down one of my legs - which I did - not fun. so he 'adjusted' it and was finished. Just wondering if this 'postpartum' onset of POTS might be due to epidurals.... my husband thinks this may be the cause for me......

Based on the few responses I got, it does not seem like there are many out there at all who can relate to my 'version' of POTS - if it is POTS at all. Everyone seems to describe their 'symptomatic' times like lightheadedness, brain fog, dizziness, presyncope. I don't even understand what brain fog means! I have none of these. I'm really not so sure I fit in here...but don't know where else to look...

Thanks for the responses. Actually, my episodes happen anytime, anywhere they are provoked. I have had to give up cleaning the floors, and the tub. I do all the other housework and cooking, albeit more slowly. I'm just not sure that I really fit in the POTS category - of course, this may be all POTS, but I'm just not sure. I have gotten better - my super-onset was about 6 months ago (had a few signs in the months preceding super-onset). I can do lots of what I call 'normal' things and generally know what to avoid. Just seems to me that my tilt #s are not extreme at all - maybe this is why mine is mild and must be provoked. It's just that I am fine most of the time! Once provoked, however, I literally feel I need medical attention. There's not much in between for me and I'm not sure anyone can identify with this. My bp is not generally low - it is normal. In fact, when I have these episodes, it is usually somewhat high, like 135/90. My HR is ALWAYS high like 85-100 doing nothing. BUT it does not jump much when I do things - my tach is more like 115. Just doesn't make sense to me as my vitals and blood tests show nothing abnormal - except the almost always high hr. I would really like to hear from someone who has had the same experience with my episodes, yet lives a normal life otherwise. I get up, drive, cook, etc etc etc. But if I try to do strenous work (much at all) or get too hot, that's it - suddenly I am extremely hot, tachy, weak, shaky, fatigues, feel like I am literally dying. The FEAR of these episodes was almost parylyzing (sp?) for the last few months; but, since I have gotten better, i.e. no more panic attacks, can do more normal things with no problem, can do some slightly more strenous things, know triggers better, etc. I feel somewhat better. Just feel that there is some very endo/metabolic specific thing going on with my body - as I described earlier in this thread. Feel I do not fit in with POTS profile since no lightheadedness, no dizziness, no very low bp - and my palps and chest pain are COMPLETELY separate from these episodes - they come when they want to (anxiety and maybe muscular with the chest discomfort).

Thanks. I have had this for a while now - it is not severe though. Just comes on from certain things like laughing, maybe using arms a certain way, anxiety, etc...

I have no breathlessness or respiratory symptoms. If I press on my chest - like right on either side of sternum - between ribs - any of those spots, somewhat hard - I get aching pain that lasts many minutes...

I usually have chest pain after I laugh--can't laugh too hard or too long because of this. It aches for a while - anywhere from 5-30minutes afterwards. Makes me very nervous - I am a smoker (please, no lectures), but never have any respiratory problems: no cough, no shortness of breath, etc. Does this sound muscular? - seems that way to me, but asking because it makes me nervous.

one more thing - during my TTT, I felt fine (nervous though) - only part I hated was Isuprel, which made heart pound and race - not fun. but nothing happened to me - felt fine. my thought about this body not handling stress thing is - it seems like my body does not produce - or signal to produce - whatever it needs to respond normally to the stress, so feel weak, fatigued, etc - also bc of this my sympathetic nervous system tries to compensate for whatever I am lacking - and makes me tachy, hot, etc - so the autonomic system is doing it's job correctly, but can't make up properly for what I am missing - does this make any sense? it really rings true to me to explain what I am feeling - never read a better explanation - actually, never read ANY explanation! anyone have any thoughts on what I may be missing? - cortisol would be an example, but I know there are many others - just don't know what they all are of how they work together...

sorry - meant body not bosy - apparently can't edit post title

Just want to understand the actual mechanisms here. I seem to be fine as long as I avoid strenuous physical work, heat or extreme emotional situations. Hard to avoid, I know. I do not have any problems with standing, etc. When I research POTS, these symptoms, etc. certain things do not ring a bell and certain things do - I know I am kind of rambling here, so bear with me. At least for me, I think the problem lies somewhere in the adrenomedullary hormones/HPA axis. I say this because I am fine with sleeping, eating, driving, cooking, etc etc etc. But add anything strenuous and my body does not respond, i.e. at some point during the stress/exercise I start the weak/fatigue/internal shakiness/tachy - just not right - however my vitals are normal (possibly a bit high like hr 95-115, bp125/80-132/90 - which seems to me to actually be a normal response to stress!!!). So, seems like hr/bp are not the CAUSE of my feeling bad - I feel/sense that my body is not producing (or being signalled to produce) enough of the right hormones that would allow my body to deal with stress normally. Does anyone identify with this at all? I feel like I don't quite fit in bc I have no problems with standing, shortness of breath, etc. and my PVCs are typically random, like when I am sitting down....and whenever they feel like happening, sometimes with anxiety, but they and my other minor symptoms have nothing to do with this stress provocation. I would like to get to the bottom of this inability of my body to respond to stress - because it is my 1 major complaint - which prevents me from some activities I need to do, like certain housecleaning. Maybe it is just POTS, but my instincts tell me otherwise.....feel it is actually primarily metabolic/hormonal in nature (I get that these probs can be caused my autonomic system - just seems like my major complaint isn't explained by POTS - which makes me think something else is going on) SORRY for the rambling.....thanks for reading. Oh, and my cortisol stimulation test came back normal - even though my morning cortisol was low but w/in normal limits -

flop - you sound like you know more than most doctors!!! seems like some of us here ought to have honorary medical degrees!

wondering if this is possible though with no family history whatsoever.....

OK, I have been Dx POTS recently - postpartum onset. Have been healthy all my life - no family history and not hyperadrenergic. All my kids are healthy too - especially my oldest, who is 9 and has always been very active. He helps me out a lot with things since I cannot do strenous activity. This weekend, I had him bring up 3 boxes of clothes from the basement - 2 of them he had to climb up and get them off of very high shelves. So, he made 3 trips up and down to basement bringing these up. Afterwards, I noticed he was lying on the couch doing nothing. Not so odd for a few minutes, but he just stayed there. He does not generally complain, so I asked him if he was ok. He said he just felt 'tired' - I asked more questions, and he said his head was the most 'tired' - like he had to lay it down, and also his whole body was 'tired'. He did not go to sleep though. This lasted 1-2 hours!!!!! I have had this exact symptom, provoked by the exact same type of thing (although I get other symptoms with it like tach and shakiness, weakness, etc) If I did not have POTS, I would probably think nothing of it - just a fluke - maybe some bit of a virus. But he is not sick. He spends tons of time out in the snow, wtc. generally, and takes out the garbage for me regularly, etc. Anyone have an explanation for this?????

Thanks. I guess my only option is to give it a try - or nothing! My hesitation is because it is an alpha and beta blocker. It is used for heart failure. This just doesn't sound right to me...

Thanks - I have read alot of user ratings too - and they are mixed.

Thanks - I have searched and found some info - but not much. I'd like to know what synptoms exactly it helped with - what dosage - and any side effects.

Is anyone out there on Coreg??

I left a message for Bev expressing my concerns and asking if I could just try an older beta first - like atenolol. Her nurse called me back and said no she thinks I should start the Coreg. Not too happy about this...

Bev wants me to start on Coreg. My tests showed that I am not hyperadrenergic; however, she thinks this is the best beta (and alpha) blocker for me to start with. I have heard some negative things and am very hesitant to try this. I generally feel ok unless I exert myself too much or get too hot - bending over for too long and occasional chest pain and palps are also a problem - although all these symptoms are independent of each other. I know Bev/Grubb are experts, but I do not have a good feeling about this - and have learned to trust my instincts more thans doctors.....

thanks for responses. my bp does not drop - it is usually normal. i can't attribute this to any change i can see in my vitals - seems random now when it happens. happened last night for no reason. took 1/2 klonopin and went to bed.