mvdula

Yes, we definitely will!

OK, here are the final/revised #s......sent them on to Bev - welcome any insights: Supine: epinephrine 38 norepinephrine 323 dopamine (below 10) total 361 Sitting: epi 28 norepi 332 dopa (below 10) total 360 Standing: epi 39 norepi 417 dopa (below 10) total 456 lab says normal ranges are: epi (less than 95), norepi (217-1109), dopa (less than 20)

Thanks. I think he will go to Dr next week - as this event was Wednesday morning and it is now Friday.

Yes, we are working on finding a Dr. He tells me now it was definitely his whole left side - about 5 seconds total - didn't realize what was going on until it was over. felt odd - buzzy on left side - like whole side didn't work - vision gone in left eye. started walking to the left...not good. the only explanation we have is he carries his laptop bag across his body, so it presses on the right side of his neck - but he always does this. otherwise, definitely sound like mini-stroke.

well, i am more worried about the possibility that it was a TIA - the reason it may fall more into that category is that he ended up walking in the center of the aisle when he had been on the right - like a loss of balance - or his gait was off for a few seconds. this really scares me since everything i read warns that this can be sign of future stroke. he has absolutely no risk factors and is young for a TIA, but still scary

I looked up his symptoms and found that it is called Amaurosis Fugax - sudden loss of vision in one eye. It is a TIA (transient ischemic attack - I guess mini-stroke) - although not sure if that is the etiology since he has not yet seen a Dr. I'm not sure though if he actually had a loss of balance - or was just unbaalnced because of the loss of vision. Scary - we don't need this now! he is 33 and in great health! He is planning to go to Dr soon

he is feeling fine - it was very short-lived. has always been very healthy - this just freaked him out a bit. the only good thing is something like this helps him understand all the scary symptoms I have been going through

My husband (33 yrs old - great health) had a scary neuro-type incident yesterday. He came home from business trip and told me about it and asked me to research it. He was walking through the terminal at the airport - very early morning - feeling fine - had eaten breakfast, etc. He says suddenly he lost vision in his left eye - he says it was not black, just seemed like no vision for a couple seconds. Then he realized he was walking in the middle of the aisle (he had been on the right - as the normal traffic pattern goes) - so feels that he was dizzy and didn't realize it or left side wasn't working right?? This lasted just a few seconds but scared him. Anyone have any ideas?

one more thing - I get this frequently late morning (but other times too). I know I do not eat enough in the morning, because my appetite is very low in the morning and tends to improve throughout the day. It does happen even after I have eaten though. I can't help but think I would feel better if I gained some weight - have always been about 92-96#s (pregnant 108-114, nursing 99-107)......but seems that weight would help me feel better. oh, and what i eat does not seem to have any bearing on this - in fact i crave and eat more sugar later in the day/evening and feel fine. do not crave sweets at all early in the day...don't crave much of anything until maybe lunchtime....does anyone else feel like this?

I keep getting this symptom, but it is vague, so keep thinking maybe I am imagining it - especially because it sometimes comes on when I know something is expected of me. It feels somewhat like low blood sugar - like weak/fatigued - but not extremely, empty stomach feeling (sometimes it is actually empty, but sometimes I have eaten recently). I did have a low blood sugar episode - while pregnant - late morning - once - which was not fun - sweaty, very hungry, shaky - recognized it, ate and I was fine. This vague thing now though - is somewhat like it except I don't sweat or shake or feel very hungry (usually mildly hungry to not at all - no appetite). So, it kind of approximates the low blood sugar feeling, but is it really? Is this 'reactive hypoglycemia' - and is it a POTS symptom - i.e. is the endo system affected by POTS?????

The lab has only reported my standing #s so far: epinephrine 28 (normal less than 95) norepinephrine 332 (normal 217-1109) dopamine (no # - less than 10) (normal less than 20) don't have sitting or lying #s yet....so far looks like not hyperadrenergic though anyone have any knowledge about these #s? they will be sent on to dr grubb when they have all the #s

Just an FYI - I had my catecholamines done locally. My cardio ep set me up in the same day surgery place to have the blood drawn (the nurse called mayo to get the protocol), and the blood was sent to an outside lab to do the testing....

Well, I do have the body type for JHS - 5'1" and about 95#s. Always been tiny, but never had problems at all. My scoliosis wasn't even noticed until I was 19 - and that was by my boyfriend (now husband!) - no Dr ever noticed anything. Based on what I have read of the symptoms though, I don't fit any better than my husband or kids. Bev asked me if I often dislocated things - I said never - but she said she could tell I have JHS even just by the way I held my shoulders - huh????? So, I can barely touch my hands flat on floor while standing (w/ lots of pain in back of legs!), and can overextend (slighlty) my elbow joint. I cannot touch my thumb to my forearm at all - my husband can! Nor do I meet any other criteria or have any skin symptoms (do have scoliosis though, but has never bothered me). My main problem is these attacks. Nothing else bothers me much! The palpitations are usually no big deal - unless I get a run of a few at once - or a big one - which is scary, but have gotten used to them overall. I can go days sometimes w/o any, usually 1-2 per day though. Sometimes more with anxiety or hormonal changes. Get chest pain in a completely random pattern, which seems to have no relation to anything else - sometimes I am sure it's anxiety, sometimes who knows. My migraines are only once per month - right before period usually - and my Butalbital works for it if I take it soon enough - only take 1 and that fixes it (have had the migraines for about 6 years). Cannot eat large meals, but have always been like that - think I have very small stomach. So, really just concerned about attacks. Basically, since I am no meds yet, I just avoid strenuous activity. There are times when I can do more without attacks - who knows why. I have certainly not gotten any worse, so I guess that's a good sign. If I date my POTS from early pregnancy (not sure about this), then it has been about 2 years. If I date it from my obvious super-onset (sudden gripping fatigue......panic attacks.....weakness), then it has been about 6 months. Oh, and the heat intolerance I am concerned about - we'll see how summer goes. Last summer was my first problem - grew up in Texas, so no problems ever before last summer (even 8 months pregnant in August '06, was fine in 95 degrees).....

I am still awaiting my catecholamine results. My cardio's nurse should call me back later today or tomorrow with full results (all lab told her so far are that they are in normal ranges, but didnt seem to specify the lying/sitting/standing #s - I will be mad if I have to do it again!!) I have no family history - and was generally very healthy as a child and young adult. All pregnancies were fine, except the last one which was much harder - I just attributed everything to pregnancy though. My POTS Sx came on somewhat in pregnancy, and MAJORLY when I cut down and then quit nursing around 1 yr postpartum. So, expecting good catecholamine results since no history at all. All the stuff Bev said totally confused me though - she thinks I have JHS - based on being a gymnast as a child, scoliosis, and a few things like hyperextension of my elbow (slight). However, my husband has just as many Sx of JHS (like touching hands to floor, etc) - and no problems whatsoever. Bev said I probably just didn't notice/compensated in the past. This did not sound right to me at all, as I never had any problems!!!!!!! She also strongly suspected that I am hyperadrenergic - but with no family history or signs before the last couple years, I don't agree. My bp fluctuates and ahad a couple higher readings during TTT, but generally normal - 115/75 or thereabouts. Esp after hearing her say the post-viral has the worst prognosis, I'm not sure I trust most of what she said - and do not want to take what she prescribed - Coreg (based on suspicion of hyperadrenergic I think).....

When I saw Bev at Dr Grubb's office, she said the people that got POTS after a virus have the worst prognosis. This is contrary to everything I have read, including Dr Grubb's papers. Maybe she misspoke, but I even said - What?? That's the opposite of what I have heard - and she just confirmed what she had just said. I guess I am just more confused in general after having gone there. partly bc of this, then my TTT looking somwhat normal to me but getting a POTS diagnosis. Also, Bev Px me Coreg (normally for heart failure) - which I have heard a ,lot of negatives about, so very reluctant to try it - esp since my tach is not that high. My ANS dysfunction does not seem to make my bp or hr go too abnormal......anyone have any thoughts about these things. oh, my POTS apparently came postpartum.........would like to have an idea og prognosis, but no one seems to be able to give me that...no family history

No, when I had the PSVT - I could feel my heart go from normal to the 250 or so pbm suddenly. I always felt absolutely fine though! Tolerated it with no problem.

Thanks for the info. I have had some of those tests through my endo - but don't think he really cares much. I may look into Dr Gilden.

Thanks to eveybody who replied. I am just at the end of my rope - cried all morning...trying to get endo to call me back. something is just nto adding up with the pots dx......

normal/light pink

seems to me maybe i have more of an endo problem? i normally feel ok, but my body canNOT deal with stress at all. any thoughts are welcome...i have tried to research, cortisol, etc imbalances but it is very complicated.....my 'episodes' are horrendous and feel life-threatening, but rest of the time generally ok - does this really sound like pots?????

forgot to add something - also, after I have one of these 'episodes' (had one yesterday - not the worst ever though), i do not sleep well. I am usually a very good sleeper. but last night, i woke up every 1 1/2 hrs - somewhat sweaty, left arm felt funny/warm/tingly, just not comfortable. i have never had trouble sleeping in my life - except after these incidents. what is going on with me??????????? i can't take this anymore.

Thank you, doctorguest. That was my feeling too. Here's why I asked. I am second guessing my Dx because: normally, I feel fine. I sleep fine, get up, drive kids to school, etc. BUT if I exert myself: cleaning the bathtub (sitting next to it) , sex (sometimes - even w/o much exertion), heat, bending over too long, anything that I have to work hard at or gets my body working hard/excited - even emotional stress - sets me off in this awful EPISODE/ATTACK. These episodes involve the following in some combo: tachycardia, weakness, shakiness, revved up feeling, extreme fatigue, general sense that I need help/feel wrong/dying (at worst). It is as if I passed some threshold and my body doesn't know how to turn back - keeps going at that pace - but I DO NOT understand the weakness/fatigue I feel simultaneously - I doubt it is from the tach bc when I take my hr/bp - it is somewhat normal but hr usually 114 or so sitting still. Once they start (have to be very careful what I do to avoid), they go on for 10mins-1hr intensely, then get somehwat better but last another hour or so at a lower level. Then I am back to normal generally. I cannot lie down usually bc it is so disturbing - can't sleep - usually walk around and sit down/watch tv intermitently until it passes. But, for the rest of the day I am depressed/worried, etc (more than a day if attack was bad) - my husband always asks what's wrong bc I am so quiet (normally very talkative). I have had cortisol tested - morning cortisol was a bit low 11.2 (range 8.5-22) but ACTH stim test they said was normal (don't have #s). I still wonder if somehow maybe my pituitary doesn't signal adrenals to make extra cortisol when needed like exercise - so that's why I feel that way - but passed the test??????? just a thought. don't know results of my catecholamine tests or epinephrine, dopamine, etc - I should know that tomorrow - since Bev thought maybe I am hyperadrenergic (but no family history, etc) - think she thought that bc of these attacks. I have no dizziness, lightheadedness or passing out. I have occasional chest pain and other minor symptoms - but the only thing I really need treatment for is these attacks. They are ruining my life - I can avoid things, but it is no way to live and the attacks are very scary! Thanks for any thoughts anyone can offer! Oh, and they are not panic - I have had panic attacks - the few I have had were later in the day after these 'POTS attacks?' bc I am so scared. Panic feels a lot different - is less scary, and doesn't last as long! I wish it were just anxiety!

I have my TTT in Ohio last week, and Dr Grubb did confirm POTS based on the results. The results do not seem extreme though (even though my symptoms can be extreme when provoked). Can anyone relate to my #s? Resting bp 108/78 hr 70-80 Tilted @70 5mins bp 138-93 hr 90s Tilted @70 10mins bp 129/77 hr 80s-90s Tilted @70 20mins bp 115/70 hr 90s-110 Tilted @70 Isuprel 5mins bp 127/60 hr 130-140s Tilted @70 Isuprel 10mins 114/62 hr 140-150s

From what I have read/researched, seems like atenolol has the fewest side effects and is very helpful to many people. What specific symptoms has it helped you with?

I don't know if this is possible or not, but had a thought when I read this. I have seen this question before and wonder if this is the reason: I (and seems like many others here) had palpitations for a few years before my POTS onset. Maybe some people got on betablockers to treat the palps and then had a POTS onset - not because of the betas though - just chronologically seems like that. I never got on betas (not yet) bc I was pregnant when my palps got more frequent/bad, and I didn't want to take anything. So, my POTS onset was pregnancy/postpartum.