mvdula

Just wondering if anyone has my 'version' of POTS (I am having blood tests for hyperadrenergic in a few days - but have not had POTS (healthy all my life) until the last couple of years). I do not have dizziness - nor does my bp drop, nor have I ever passed out, nor lightheadedness, nor brain fog. My main problem is I cannot do exertion - if I use my arms above my head, or bend over for any length of time (like to clean out the garbage can), (even carved 1/2 a roast the other night and suddenly felt hot, weak and like I was dying - feeling lasted 1-2 hrs), the faster and more strenous, the worse I feel (depending on the day). Heat also makes me feel ike I am dying, can't cool off, etc. If I avoid all these things (virtually impossible), I feel ok. My other symptoms are chest pain (occasional - no apparent cause) - which is independent of other symptoms - my chest bothers me a lot if I bend over for too long; my left arm periodically feels tingly, warm, slightly numb but I can use it fine - I just ignore and distract myself until it goes away after a few hours - this is also independent of other symptoms - comes on for no reason. My palpitations are also independent of other symptoms - and come on seemingly for no reason. Any other symptoms are much more minor - who knows if they are even POTS. I know that POTS is difefrent for everyone, but would someone who has similar symptoms please respond - I feel a little alone with my own brand of POTS - and second-guessing my Dx bc of this. Thanks!

Flop and everyone- Thanks for all the advice and support!

As I mentioned in my first post, I would like to start trying just a beta blocker (m y bp is not generally too low, just normal) - and I think it is the constant tach that is wearing me out, etc. From everything I have read on this board and elsewhere, it seems like ATENOLOL has the fewest side effects, and is the best tolerated with the best results. Could anyone who has tried it or is on it share your experience with me?

Well, I saw Bev at Dr Grubb's office yesterday. It was a very long day, leaving Chicago at 6:30am and arriving back home at 11pm. They even got me in for the TTT while I was there, which confirmed the diagnosis. I am happy to have my Dx confirmed, but mainly sad. Who wants a diagnosis of chronic illness, espcially being a wife and mother of 4? Bev also wants me to have some more blood tests to test for hyperadrenergic POTS (the tests that reflect whether I have the NET gene defect). I hope they are negative for my kids' sake - I expect they will be since I have no family history. Bev did prescribe Coreg, but I will not take it until my blood tests are done. From what I have read, I do not want to try the Coreg (beta and alpha blocker). I realize that they are the Drs and have lots of experience, but feel from my own research, symptoms, feelings that I would rather try just a beta blocker first. I hope my Dr will let me try this first - he is a very humble Dr and always listens to me. Also, Bev feels that I have JHS - I was very surprised at this, even though I was a gymnast when I was young and have scoliosis that developed as a teen. I never noticed my arm can overextend - but she and my husband could see it clearly. So, she thinks that predisposed me and pregnancy/lactation was my trigger. It was good my husband went with me and Bev talked to both of us - he is now more sympathetic to my condition since he undrestands it better (is now explaining it to everyone!) and has heard the confirmed Dx from the experts. So, thank God I got a real Dx, but to me it is very sad as all my life I have been healthy and it's a little bit of an identity crisis to have things change like this. I'm sure it has taken many of you a while to accept and come to terms with this Dx, and realize you can be happy and have a life, despite your limitations. Thanks for reading!

I was on Lexapro for 3 days before I couldn't take it anymore - I thought either it would kill me or I would kill myself - it was a nightmare - I know these are normal side effects - but she gave me 1/2 dose - can't remember, I think 5mg to start. I couldn't stay asleep at night, couldn't do anything, couldn't eat, was depressed and panicked. The first dose was ok, but after the third, I knew I couldn't take it anymore. I don't mean to scare you but those were the worst few days of my life. If I want to try another SSRI, I would start at a VERY low dose and very slowly.

I live in Chicago - would you mind telling me who the ans endo is? - if that's allowed - otherwise i can pm you - thanks!

not on any meds except whats in my sig line. take bp on level with heart also, my bp machine is Omron HEM-711 - that I plug in.

OK, since my cardio ep suspected POTS, he advised me to get a bp machine. I do not typically feel bad when standing. Does anyone have any insights on my readings? HR is always high - it is normally between 90-115 or so - this is while I am sitting doing nothing. The lowest reading I have gotten (once) was 78. (Although at cardio he said it was in the 60s - and bp was 110/70 - he must make me very calm! - when he did sitting then standing - my bp did not change but hr went from 60s to104 or something) BP is usually between 110/70 and 125/85 - while sitting doing nothing. When I felt bad - overexerted - my body does not calm down - feels totally exhausted but wound up - 20 mins aftre resting - BP was highest about 137/95 or so and HR was about 114 still. My questions are: 1)why is my HR always high?????? I have not taken it while rushing around but sometimes I know it is pounding and/or fast. 2) Why is my bp so normal if I have POTS? - I get the hr compensating thing, but is it ALWAYS compensating? 3) While standing still here taking readings I am getting: 117/91 112hr 120/93 114hr 137/82 109hr 120-95 108hr error ? 125/93 115hr 120/90 110hr 118/93 114hr any thoughts? don't these seem like somewhat normal #s except for the hr being high always? does this sound POTsy or no? I typically have problems only from exertion or heat or extreme stress. No dizziness.

ajw and Maxine- Thanks so much for the sympathy and encouragement. It does help me to get out and do things (like tonight) - since staying home not doing much makes me more depressed about all this. I have a good cardio ep - he is very good - very caring - very down-to-earth and knowledgeable about POTS - that's why he got me in with Bev - since Grubb's office told me his next appt is Dec 30th!!! (Also, have seen an endo, who did cortisol and thyroid testing - which came back fine except my initial a.m. cortisol was somewhat low for morning - 11.2 I think (range 8.5-22) - but ACTH test was fine they said - that was a few months ago when things were worse) Apparently, Bev could get me in sooner with Dr Grubb if she so decides (at least thats the impression I got) - but I don't think I am as bad off as many. It's just that the symptoms (mostly attacks) have been so scary that the trauma, anxiety and depression is hard to get out from under. I do have help - my husband does a lot - my kids help a lot - and we have a lot of good families we are friends with that would do anything if I needed it. I also have a carpool driving my kids home from school every day - they live on our block - and we help each other in any emergency too (I have been to their house at 2am so they could go to the ER and vice-versa). Even a great school that makes arrangements to provide meals (sent home with kids) when families need help. Oh, and an in-law family I can always call on. It doesn't get much better than that. So, I thank God for the good friends and help that I have. It is just hard to share my real feelings and emotions about what has happened because no one really understands how much it affects you unless they have experienced it. Thank you all for caring!

Literally feel like I am dying (the worst ones) or just wrong (not the worst ones). Tachycardia, shakiness, weakness, fatigue (extreme), hot, revved up feeling - some combo of these depending on attack. Words do not do this feeling justice - the overall feeling is just so wrong and awful. I have had it to a greater or lesser degree depending on trigger - heat, exertion, (extreme emotional stress). Can go on anywhere from a few minutes to 2 hours or so - sometimes with fatigue (to lesser degree) afterwards. I also have chest pain and PVCs - but these symptoms are not generally part of these attacks - the chest pain and PVCs are independent of each other and any other symptoms - sometimes from anxiety, sometimes I have no idea. I do not have dizziness, nor pass out. My cardio ep did a poor man's TTT and pulse went up like 40 bpm after standing for 1-2 minutes - but I generally have no trouble with standing. Bending over is one of the worst things for me though - can't keep doing it (like pick up toys) - feel bad afterwards - not one of these attacks, but just weird, not right.

I have an appt with Bev, Dr Grubb's RN in a couple weeks. I am looking forward to it because I have a tiny bit of hope they can help/diagnose me. My suspected diagnosis is POTS - I think brought on by pregnancy. Most of the time I feel fine, at least ok, sometimes totally normal - meaning I don't have many actual symptoms day-to-day, doing what I call 'normal' activities. The problem is because of the episodes (extremely scary) I have had from POTS, I also have anxiety and panic disorder. The physical symptoms I have mostly come on (these are the scary ones) from exertion or heat (occasionally emotional stress). I am so afraid of these things - and not sure where my threshold is, that I avoid a lot. I get up, take the kids to school, maybe run 1 small errand and come home (with my 17mo old). There I stay for the rest of the day. I makes dinner, etc with no problem. I don't often go to grocery store with baby, since I have felt somewhat bad just unloading the cart onto the belt (not sure if anxiety or POTS). I do go out by myself somewhat on wknds to grocery shop or errands - feel less anxious bc leave baby at home with husband and he can unload groceries when I get home. So, not exactly agoraphobic, but somewhat. If I have to go out for something out of the ordinary, say to pick up someone from airport, or - tonight - go to a class in the city (with my husband) - I am extremely anxious - on the edge of panic - all the way there - I tend to settle down a little bit after it starts. I don't know how to get out of this - please help me. I have been to therapy but stopped going after 3 months bc I didn't see much more benefit. I am crying as I write this because I feel like my life just suddenly changed and feels like it is ruined. Just not sure how I am ever going to get through this. Sometimes I think just the trauma of what has happened (I mean scary episodes, where I really felt like I was dying - yes, I have also had panic attacks - they aren't 1/2 as bad as what I call POTS attacks), has made me so traumatized. I cry when I am alone, and even though do share things with my friends, I don't tell the whole story - I don't tell them I wonder how I am going to go on and be the wife and mom I want to be when these things happen to me and I am so TERRIFIED. I don't tell them that sometimes I hope maybe one of these episodes would just kill me so I don't have to live like this anymore. My husband has only a certain amount of tolerance for listening to me talk about symptoms, etc. He is a good husband, sympathy is just not his best quality. So, I feel alone, terrified, and hopeless. Can anyone help me? Thanks for reading...

just thought maybe we could add age - and age of onset to this survey-

Gena- Thanks - Your response helps me a lot because those are the same thoughts I have - that maybe I don't realize that the anxiety is tensing up my diaphragm - esp since distraction does help it. I even had it again when I woke up last night - but not as bad and did really feel like tension - just surprises me that I would be so tense in sleep - but I guess it should actually prove it since I woke up from a bad dream saying "No-no" while crying.

possible hiatal hernia? this is just my guess. i don't get any bad taste in my mouth or any burning sensations. i am full very quickly (sometimes this produces chest fullmess, sometimes just stomach fullness - an awful type - very uncomfortable) - cannot eat as much as i want or i will feel sick bc of fullness- have to eat a little at a time. i have always been like this to some extent - very small person with what i assume is a small stomach - i joke it is as if i was born with gastric bypass. but the tightness/discomfort in morning is new - diaphragm area and mainly in middle where my eso would go through it. just a thought - i can't think of anything else - anyone have any ideas??

This is a new symptom that I have woken up with in the morning twice in the past week or so: when I wake up, I feel kinda like I have to work harder to get a deep breath - but I can actually breathe fine. It feels like maybe my diaphragm is tight. The first time I thought maybe gall bladder (but I just woke up, so obviously not after eating) because when I pressed in that area the right side felt more sensitive/knotted up. It is not pain. Like a whole band of tightness where diaphragm is - under chest - but makes my chest feel kinda tight. Today while driving in morn, (it is still bothering me now) I pressed in that area in the middle - like an inch or 2 under sternum and it hurt - in a weird painful way like when you press in a weird spot on your back and feel that you are pressing on a nerve or something - very sensitive. Very tight and feels like knots (but I can't feel anything hard when I press) I can distract myself and it doesn't bother me as much.......but I'd like to know what it is. Anyone?

bump anyone else have POTS that started during/was caused by pregnancy?

My only experience with POTS (not def diagnosed yet) and anesthesia is with an epidural. I had 2 epidurals in years past that were fine, but the last one (with POTS) was awful. I did not have any idea I had POTS (think I developed at beginning of pregnancy), so no idea why I had reaction at the time. Once it took effect, I felt absolutely wrong and panicked for the next 2 hrs until it wore off. The Drs and anesthesiologist had no idea what to do with me but monitor my vitals, watch me and worry. My arms felt dead - but worked fine - I was very hot and ice pack did nothing. They said my vitals were fine, but I don't know what they were. They gave me Benadryl to calm me down so I was in and out of sleep. Sorry to say but it really was a nightmare. I will never have on again - I would rather have the pain (which I have done before - 1 birth with no meds.

My appt is Feb 21 at 11am - hope I am not late - we are driving that morning from Chicago.

Thanks for the info!

Replying to this old post, because I have wondered about this myself: I had PVC's and SVT (that was ablated) for about 3 years before my POTS onset (not diagnosed definitely yet). The PVCs have waxed and waned seemingly according to hormones and anxiety. Seems though that when PVCs started (about same time I had 1st SVT), my life changed - not like it did when the POTS started though - just enough for me to look back and say something shifted......

If I have the "overstimulation" problem (meaning weak, shaky, tachy, revved up but dying but can't sit still) after exertion or super-stressful situation, does that mean I have the hyperadrenergic form of POTS????? It is my main problem other than heat intolerance. I have heard that the hyperadrenergic form usually has to be treated for life...this worries me....

bump

I got an appt to see Bev, Dr Grubb's RN in February. Anyone seen her? What should I expect?

just bumping this up to see if anyone else can share their pregnancy-induced POTS experience...thanks!

Just a little more info- I did not have POTS symtptoms before the ablation - had never even heard of POTS. The only symptoms I had were SVT and palpitations. I am just now looking back at the timeline to see if I can pinpoint when things really started for me. Seems like they started during this pregnancy, and got worse with hormonal changes after. Thus I have thought up until now that that was the cause. Now I wonder if the SVT ablation is related - since it was only 2 months before I got pregnant. These are the only 2 causes in my life that I can think of - and that fit with the timing of symptoms. I have heard not to have ablation on sinus node for POTS - although that is not what I had - and it did cure my SVT, I was just reading about some patients developing IST/POTS? after SVT ablations. Since ablations are relatively new, I wonder how much research there is on this.