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!!!!!!

I thought that the P in PSVT stood for 'paroxsymal" (sp?), which means is starts and stops. Can someone clarify?

I have had this symptom before....usually refer to it as a chest episode, as it is different from my weakness episodes, but lasts about the same amount of time, usually 1+ hrs. It started today (late morning is typical) as a racing heart - I get this a lot at this time of day accompanied by major thirst. It kept racing and my chest started hurting - actual pain that seemes to move around and radiate - no shortness of breath, though I was trying to slow my breathing/exhale slowly so as not too freak out. About 30 mins into this came the next part of the episode: kind of an entire body raciness and urgent need to have a BM. I did go to the bathroom and have a BM, which was not diarrhea, just normal. This did not relieve the chest pain, however, which continued to wax & wane and move around/radiate (maybe a 4 on a 1-10 scale). It did somewhat relieve the general racy feeling, but I was struggling to keep myself from super-anxiety. During this time, I was walking, sitting, and driving. About 1.5 hrs later, it was over, but I still have a little bit of racy heart and feel on edge. Does anyone have any theories or have you experienced this. I HATE it. I have had my heart checked and been on monitors many times, and they never found anything.

Please choose one of the above answers if you have had an ablation, esp if you had no problems healthwise before your arrhythmia/ablation(s).

Glad to see this topic. I was actually thinking about starting a new thread about ablations. The more I think about my POTS onset and history, the more I now think my POTS was brought on by my ablation. I was perfectly healthy til about 29/30, when I started having some PVCs and only 2 episodes of SVT (at least 1 year apart). The problem is mine didn't just stop on their own. Once, I held my breath (by instinct?) til it stopped, the next time the EMTs got it down by having me do the vagal (sp?) manuevers...but it took a while. The SVT was triggered both times by bending over. I have a friend who has had the same thing triggered by bending over since she was 16 - but knows how to stop them and has only ended up in the ER once for it. One time in the ER was enough for me, and I decided (after many months of thought) on ablation. It fixed my SVT since I have not had it since (ablation was 9/05); did not fix my PVCs - and I have had a few other weird caridac events (never caught on monitors of course) that were terrifying but short-lived that felt like fluttering/completely disordered beats- super-terrifying and I always have the phone in my hand ready to dial 911 when it stops. However, I now think that my POTS onset - which I would date to about 2 years later - was caused by the ablation. I know that the word is that ablations don't cause POTS if they don't mess with your sinus node. I just don't believe that. I did have a pregnancy after the ablation - and the weaning of the baby was when I had a major onset - clearly the hormonal change affected my body majorly. BUT I don't think that pregnancy, etc was the CAUSE at all. My hormonal cycles affect my POTS majorly, but there is no reason to think that that would actually cause POTS. Also, my nasty reaction to the epidural with that birth (have had 2 epidurals before w/ no problem) was a sign that I already had POTS I think. The symptoms have just waxed and waned since then due to various factors. I am wondering how many younger women out there have had an ablation and then subsequently (within a few yrs) developed POTS. I bet there is an obvious link....I will try to figure out how to do a poll on the new & improved site! Also, would like to include prognosis/progression/improvement with this type of onset.

Thanks, firewatcher. I do that - my 11-yr old is in charge of the cart, and loading the car, unloading at the house, etc. - I actually have trouble pushing ithe cart if it is not a smooth cart or is too full. He also checks out for me at self check-out, and pays. My 10yo and 8yo bag the groceries. So, I do have a lot of help usually. This trip with the chest pain incident - I had only my 8 and 4 yr olds with me and thought I would only buy a couple small things. Will not make that mistake again - the 8 yr old ended up getting me a cart and pushing it with the offending basket in it - even though he could barely see!

I wish it were chostocondritis - my chest pain has never matched those symptoms. I was actually carrying the basket over my forearm - had my arm bent to hold the basket in the inside of my elbow - does that make sense? Also, I kept switching arms bc it was so heavy. I don't think I could have carried it in my hand with my arm extended - hard for my hand to hold - and seems the weight is so far away that it pulls more and seems heavier - does that make sense? I guess that's why I carried it the way I did. Any thoughts with that info?

Thanks for all the kind words. It was actually very short-lived. I just want an explanation! I have had countless EKGs, a stress echo a few years ago, an implanted loop recorder, etc....all is normal, all they ever catch are PVCs and a relatively high heart rate. I have trouble carrying heavy things or working with my arms too much - esp overhead. I basically solve this by avoiding those things - MUCH easier said than done when you are a mom with a large family. The kids help a lot, and my husband does too. I just don't get what I AM supposed to do when I am so limited - it makes me feel lazy....and scared, like I am basically just trying to avoid symptoms....and even death by avoiding activities. I can't do exercise, clean the floors, etc, or I will end up with a POTS spell feeling very weak, revved up, high hr, and on the verge of collapse (tho usu no chest pain) for 1+ hrs. I just wish I knew what is CAUSING the chest pain!

OK, warning: this is a very angry rant - I am at the end with this illness. Can't take it anymore. Why do I have these problems at 35yo with 4 kids and 1 on the way???? OK, I made the mistake of not getting a cart at the store. Then decided to buy large chickens because theye were buy one-get one free. Got basket and started to carry it (with at least 15# in it) to the front of the store. Result: Chest Pain. I mean, COME ON. I can't even do that!!!!!??????? It was not what I'd call severe - but obviously real and caused by what I was doing - and I don't think it was muscular either. I can't take it - it sounds awful, but sometimes I'd just rather drop dead than keep dealing with this crap. Am I supposed to just sit around at home in a chair all day???????????????????????????? Sorry again - I really want an explanation for this garbage - but I'll take anything - theories, commiseration, whatever

Reen, What is TENS? I have never heard of it? My deliveries have been ok and usually about 8 hours or so from beginning of real labor to birth. I have had one of them with no drugs - and it was great - BUT, I did not have POTS then and felt very in control with that one. Maggie

I just found out I am pregnant with my 5th. We are very excited, as are our kids. I am not sure if I had POTS before my 4th pregnancy, during or after - but it manifested massively and got Dx when I slowed and stopped nursing my 4th. So, at least I think I know a little more what to expect this time. So far, just waves of fatigue from about lunchtime on - they come & go, but that is normal anyway. I feel like an old lady anyway w/ POTS, and pregnant at 35 seems ancient to me since 3 of mine were in my 20's and really were a breeze. The things I am nervous about are: the palps I got TONS of in the last trimester, the lots of headaches I am getting - migraines (Tylenol works tho ), and mainly the birth, since I had a VERY bad reaction to the epidural last time - an experience I do NOT want to repeat. Also, nervous about cutting down the nursing.....but that is a bit away, and I guess I know how to handle things a bit better this time. I felt, and have always felt fantastic while nursing for the first 9 months or so - tons of energy, no symptoms, etc - so looking forward to that. Thank God my kids are a little older and can help me out this time!