mvdula

HI Cat-Lady! I was hoping you would respond - I thought you had a similar onset. I did post a poll somewhat recently re: ablation link to POTS? about how many of us think our ablation was the CAUSE of our POTS....would you please vote in that? I need it bumped up anyway!

Just want to chime in that I have very scary episodes (not the same kind) too - I HATE them. They always scare me.....and I often wonder about driving, taking care of my kids, etc. Fortunately, I do not pass out. You are not alone though!!

Yes, I am currently pregnant. I think I had POTS (or was beginning to develop it) during my last pregnancy (but not because of it). It does change things a lot, and has lowered my threshold for a lot of things. One of my major hypoglycemic episodes was when I was pregnant - but did not have dysautonomia at all yet.

Sue1234 - I wonder if I have an actual drop at that time of day too. Most days (depends when I got up, etc), I start to feel hungry/odd around 11am or so - if I don't eat sooner rather than later, I will feel weak and not right. The part that confuses me about this is: I have had 2 instances in my life that I KNOW I had very low blood sugar-- the shaking, sweating, major hunger - got food asap and fixed it. In these frequent morning episodes, I never get to that point even if I don't eat for a while - but I do feel weakish/odd/hungry-but stomach feels past hunger and can't think of anything I want to eat. Eating also does not (always?) seem to fix the feeling, at least not right away. Wonder if I do have low blood sugar (reactive)- just not as low as those nasty crisis-like incidents. I really need to eat 2 small lunches I think - one about 11am and one about 1:30/2pm. After a certain hour, I don't seem to have the episodes - it is almost always a late morning thing for me - is this common with dysautonomia??

Thanks...I could stand to eat healthier - and space my meals better. However, I have always had very low BMI (just genetic, not on purpose) - used to weigh in the 90's (I am 5'1") - I am now about 105. My remission period - last year coincided with putting on that little bit of weight (not from eating well tho) - so I thought they were connected - but no such luck - kept the weight and the remission ended. Unfortunately, this pregnancy has really, really lowered my threshold even more for bending over and exertion. What's weird is that I almost feel like the bending causes too much blood to be in my chest & my heart can't deal.....weird, I know - but that's how it feels.

MacksMom- You totally get what I am saying. Nothing really precipitated my SVT - I had had 3 children, but with no complications and my youngest at the time was about 3 or so....and no illnesses that I can remember. Yes, it seems to me that anything like mito would have been a problem earlier on. The mid-life onset does point away from that. The exertion is def my main trigger, and the late-morning weird hunger/blood sugar thing is pretty frequent for me - think I need to eat something small at that point to head off anything. My episodes just feel so endocrine - like something is way off - all I can say is it just feels wrong, like I am so weak and about to collapse, but I never do - and walking/alternated with sitting seems to help.....thanks for your input

Hi Yogini, My POTS was DX in Feb 08 - and symptoms started about 6 months (arguably sooner)before that......about 1.5-2 yrs after my ablation. Yes, for me most any exertion, extreme emotional stress, hormonal changes and sometimes nothing (but I suspect at these times it is a blood sugar type issue even tho it does not feel like typical low blood sugar) will cause my episodes - sometimes now I know the vague warning/feeling of an oncoming episode and realize that I need to stop plunging the toilet (or whatever minor exercise I am trying to get done). I have a lot of fear about my episodes....can't get over it. I don't panic with them anymore though - so I am able to distinguish panic symptoms from real episodes - tho they can overlap.

Dianne, Yes, I was healthy- no problem with exercise, or anything all my life. UNTIL - early 30s SVT and PVCs, then ablation, and within 2 years POTS. So, something changed drastically - and all I can think of is ablation. Could have been many things though; I second Sue's question - what metabolic illnesses? The exertion problem is by far my main and worst problem. I have never had a problem with standing or dizziness - there was no improvement or decline - it was just never a symptom for me....which confuses me when I read the POTS board.

I wish my episodes were connected to menopause, because then I would have a reasonable expectation for improvement. I need to figure out the real root cause for me. My current theory is ablation....see my posts and poll on that. However, my episodes feel like weird endocrine events....so I still wonder about things like MCAD, etc because of the similarities and episodic nature.

Unfortunately, I can't attribute anything to menopause. My POTS started around 33 yrs old....and I'm very regular. My cycles do affect the POTS though. I need to find the reason for my episodes......knowing it's "just POTS" isn't cutting it any more for me. I just can't imagine living the rest of my life with this fear and episodes.

I have always thought that I had a little different version of POTS than it seems many of you have...maybe not, please chime in! I never really have had a problem with standing....just with exertion. Well, after a party the other night, my standing stamina was confirmed when I saw the time when I left the party. I was there for 3.5 hours and don't think I sat down once. I did move around a bit, but mainly was standing still and talking to people. I felt fine, good in fact. I also do not have dizziness. My problems are with exertion (the threshold moves depending on hormones, etc, but it is always pretty low), bending over, doing much with arms above my head, heat, and sometimes no provocation (problems typically occur late morning). The consequences are not nice - awful spells (sometimes delayed, usually 1+ hrs long) of weakness, feeling hot, chest 'intensity' for lack of a better word, racy heart, feeling wired, bp 80/120 (high for me, but I know it's not high), maybe sudden bm urge which often leads to sweating, they are very scary, can't lie down bc I am so racy & wired, trying hard not to panic - I am better at this part now. Oh, and I usually have to pee afterwards. They leave me depressed and crying. Thoughts? Oh, and I'm the one who thinks my POTS was caused by ablation (for SVT); but I am open to hearing any helpful theories. My TTT was positive, Dx by Grubb though he did not supervise the test, he reviewed results and Dx'd me. My hr did go up enough and pretty much stayed up. My bp jumped around and was mainly up not down, though not dangerously. I was very anxious during test, which I think affected results slightly....but never felt dizzy.

I remember we had similar symptoms....are you still around??

Yep, I think so. The more I think about it, the more I think my POTS was caused by my ablation - see my poll on ablation. I wish it were a more 'fixable' cause, but who knows. It would explain a lot of my symptoms....esp that bending over now causes a lot of fullness in my chest (my SVT was triggered by bending over) and feeling bad - can't do it much. The things I am not sure it explains are: problems with heat/hot weather and my weakness episodes that last over an hour........these episodes may be explained by it though, since they are sometimes triggered by exertion - I cannot do any real form of exercise, have learned that the hard way. I hat the mystery of it, but have not had many responses to my poll. I have a feeling that there is a subset of us out there that ended up with POTS bc of ablation. I can't remember, but I think CatLady had an ablation too, and has similar symptoms....haven't seen her on the board for a while though...maybe I'll post to see if she's here...

Just looked up my catecholamine results. They took them after 30 mins of resting: lying down, sitting & standing. Here are my results, which look fine to me....anyone have any input?: (all pg/ml) Lying: Epi 38 Norepi 323 Dopamine (too low to report - under 10) Sitting: Epi 28 Norepi 332 Dompamine same Standing: Epi 39 Norepi 417 Dopamine same

Thanks, StacyRN. Sounds like you have worked hard to research and firgure this out for yourself. I did have my catecholamines checked and they were normal - can't remember the numbers, but I will pull them out and look. My norepi did not go up very much if I am remembering correctly. I do think though that something is being missed about my 'episodes', of which I have a couple different kinds. They are intense and episodic, not all day long at all, nor every day - provoked by exercise, heat, and sometimes hormones or nothing. They include some combo of: chest pain, feeling hot, feeling very weak, feeling wired, feeling like something is very wrong but I can't put my finger on it, it is a scary feeling that seems dangerous. My bp is higher than usual during these episodes - like 80/120+ (I know that is not that high), normally it is much lower like 70/115-60/90......and I feel fine with this bp. My hr does not change much, at least not sitting, usually 90-115. Any thoughts you can offer me as far as testing to pursue, etc. I would LOVE to find a fixable reason for my episodes!!!!!!