mvdula

Cat_Lady, Same here. SVT out of nowhere - only a couple times...but it was like that 250+. Ablation....then a few odd things, but no POTS.......POTS Dx (close to onset) was about 2 yrs later (coincided w/ weaning of nursing of my 4th child, so hard to tell all the timing esp since I had some weird things while pg and awful epidural reaction......so maybe POTSy soon after ablation)

yay! it worked this time!

trying to add poll again...

OK, well, clearly I don't know what I'm doing. Poll did not show up...help?

This is my first poll, so I hope it makes sense. I was healthy as far as I know until about 30. Then SVT, then ablation, then POTS. It seems to me lots of us who are young adult females have this similar onset. Just think it's a clue. Please post more info if you want - like age of onset/gender, etc. I am very curious about this.

HI ethansmom, My POTS started post-partum (upon starting weaning), so not sure if my situation will be of any help (but I had SVT and some weird PVCs, etc pre-prgnancy and during, so very hard to date real beginning of POTS). Therefore, my last pregnancy was not like the first 3. The 2nd and 3rd month I was way more fatigued than usual......really bad. It did get much better at the beg of the 2nd trimester. My main problem was that my PVCs increased to maybe 35 per day that I felt - and they would group up badly around 7pm. So, about 6-7 mths was when I had the implantable loop recorder put in - never showed anything but PVCs and high heart rates - like 160s, 170s, to which they would always ask, when do you exercise, and I would say I don't....clearly POTS or at least foreshadowing it. But I did not know that then, I just knew I had had the SVT arrhythmia and scary PVCs. Delivery was good EXCEPT I had a nasty (will never have one again) reaction to the epidural (have had 2 before w/ no reaction)....felt super-hot - had ice on my neck, which didn't help, wanted to leave the hospital, my arms felt dead, and my chest felt hot & dead. Very very nasty...terrifying. Thus, after suffering for about 2 hrs with this...while the epi wore off, while they gathered around to wonder what was wrong w/ me and say my vitals were fine, I had the baby - which was pretty uneventful and fast, except that my epi had worn off pretty much - oh, and they gave me Benadryl during that nasty 2 hrs, which did little except allow me to oscillate between sleep & panic. Not fun. While I nursed the baby for the first 9 months or so, I felt FANTASTIC. About 9 months, when he was eating more, I started having major heat intolerance - terrifying episodes, where I could not cool down for an hour or so - needed a freezer to get even a little relief. By fall, when he was almost weaned, I was having strange awful episodes (felt like death, heat, weakness, exhaustion, racy heart) periodically when I would exert myself. Went to my saint of a cardio-ep, who sent me to Grubb, and was Dx in Feb '08 (baby was born in Sept '06). So, though I would like to have more children, it scares me to death. I am overall improved....would just like to know when/what exactly started my POTS. Don't know if this helps you - hope it doesn't scare you - nursing was a fantastic break from any sort of symptoms, but I would wean very slowly.....problem is I can't take Klonopin, nor my migraine med during pg or nursing. ugh.

have had one - during pregnancy - well, was put in during pg...local anesthetic. didn't catch anything but lots of PVCs.ugh. but (this was before i was DX w/ POTS) they would always say when they took the reading, when do you exercise. I would say, I don't, but I have 3 kids. So I guess we just laughed off the high (I think like lots of 160s) high heart rate....

had similar thing the other night - got up to pee and by the time i got back to bed, my heart was pounding and racing. ick, not fun. i lay down in bed (usually i can't stand this and will need to walk around a bit)....and it must have settled down pretty quickly bc i fell back to sleep. it was a lot of pounding and racing for just waking up to go pee!

would like to vote, but none of the options fit for me. mine shoots up fast......but it doesn't settle down fast at all. in fact, i wonder about this symptom bc i think maybe it's a clue to something too - after walking upstairs, etc. my HR does not come down for a while - lying down does not fix this. not a fun feeling.

I have the same thing since POTS. Can walk, stand, do cooking, etc for the most part. But anything strenuous, esp for more than a minute or so (ie I plunged the tub drain a couple days ago bc it was slow-draining - esp bad bc upper-body strain sets off POTS way worse than lower body exercise).....I did it quite a few times - but was kinda pacing myself - at some point, I realized I needed to stop so I didn't totally cross the line into a big POTS attack. My chest felt a bit funny for a while after that, but went away relatively quickly. If I were ever to attempt some full workout.....I would NEVER make it through and would end up in one of my episodes......weak, awful, fatigued, no appetite, possible chest discomfort, feel like I am dying....for a couple hours at least. I hate that I can't do the things I want to do.....but trying to learn to live with it....

Well, I think at the onset of my POTS, I could not drink. Now, however, if I have enough wine, and I don't mean drunk - I mean buzzed - maybe, very buzzed; I feel relaxed and don't have symptoms - I can do more w/o the pounding heart/exhaustion/episodes. This is the same effect Klonopin has on me; but my catecholamines are normal. Any thoughts?

I had my catecholamines checked. They were normal. Just wondering if anyone can give me more info whether my 'episodes' sound like MCAD episodes or not. Do MCAD episodes last 1-2 hours, etc etc?

One other thought - though I do not have a lot of allergies (cats only that I can think of now, and we have 2 cats, so not that bad obviously), I do have what seems to be a sensitivity to certain things - what I can think of right now is smells - i.e. if I keep smelling perfume on someone nearby, I can't stand it, and get a headache. I have to wear mine only on my back and hair so I don't have to smell it all the time......thoughts??

Thanks, Mack's Mom. I have read lots of older posts (not so much info out there by googling this). Still not all that clear to me.....just makes me wonder since I basically have 'episodes'/'attacks' and that is pretty much what my POTS consists of. Yes, I am tachy after going up the stairs, etc. But there is a threshold I cross in exertion or heat or whatever trigger, and that's it; I know I've made a big mistake. The feeling during these (you can see my past posts for multiple descriptions) is pure ****....and fear. It really does feel like I am dying during the major ones. And the need to go to bathroom - #1 or #2 is often involved, either at the beginning of episode or at the end of it.

I have been reading some old posts, and noticed that the MACD episodes sound exactly like what I have/also same triggers. I do not have dizziness like most POTS patients. I do not have many allergies either, and regular bowels - no real probs. BUT, my main (only??) complaint is my episodes, which I've posted extensively about. They are triggered by heat, exercise, overstmulation, sometimes being too full. They feel like death, terrifying, extreme weakness/fatigue, palps, racy heart, hot, out-of-it feeling (I think maybe bc all I can think about is what the **** is wrong w/ me) need to go to bathroom, chest pain/.fullness/tightness sometimes, need to pee afterwards usually, loss of appetite. I am usually fine unless I trigger an episode (which can be major or minor) lasting maybe 1-2 hrs. Have had a remission period too. Does this sound like MACD....anyone shed some light on this? Have not had these all my life....started in 30's after SVT, ablation & pregnancy.

Lieze, I don't get these during the night, but.....wow, can I relate to your feelings. Many of my symptoms induce terror in me too. I have had a couple of awful, weird palpitations (I would even call them something more like bad rhythm/wrong) that got a bit stuck, then I get the flushed/face rush/almost pass out/something really not right feeling. I have to move around when these happen (Thank God only a couple times). My other symptoms equally terrify me (not the minor pvc palpa anymore, as I am pretty used to those. You would think having had these symptoms for a while now, I would get used to it, but I don't. It just makes me scared, then later sad, crying depressed depending on the severity. That is what I struggle with almost more than the symptoms - sadness, depression, fear of when the next symptom will strike, worry about future & kids, etc etc. It just seems like such a cruel illness - I mean it's just not clear-cut - like a leg that's injured so you can't do certain things (God forbid....I don't mean to compare)....this is more like a mystery that keeps scaring me to death!

Got to be a reason so many of us share this symptom - I'd like to know what is really going on with our bodies when this happens. Anyone have a theory? I have other times when I have chest fullness/tightness/pressure too (sometimes has to do with eating, sometimes bending too much, etc.) but I am almost never short of breath - do have the feeling I can't breathe in certain positions though - like when I am slouching at a certain angle. Just seems like this is such a mystery - sort of fascinating...but mostly depressing. Like many other illnesses.........I hope there will be a cure one day.

HI Dani, I don't want to scare you, but.....I had a very bad experience with my last epidural. My first 2 kids - I had epidurals and they were fine. My 3rd, I had no drugs (best labor & delivery by far!). My 4th (think I already had unDx POTS), the epidural made me feel like my arms were dead, I was so hot (ice packs on neck did nothing), and basically panicked for 2 hrs til epidural wore off. I would take the pain over that experience any day. I hear what you are saying though about your body's reaction to the contractions. That's not much better! I was surpirsed to read all these responses that so many POTS people have had epidurals without awful side effects. Maybe it's just my body....but I tolerated them fine pre-POTS. I will never have another epidural.....nor would I want to feel tachy, etc with each contraction though. I would talk extensively to your ob and cardio beforehand.......just thought I'd offer my 2cents.....hope it doesn't make decisions more difficult for you!!! Whatever you decide, you'll get through it. Keep us posted!!!!

Yes, Cat Lady, that's how my SVT was - twice - and that was enough for me. It must have been 250 or over - the first time I stopped it by holding my breath, apparently by instinct, since I knew nothing of such things at that time - the second time I couldn't stop it and the EMTs helped me bring it down by vagal manuevers. I remember them saying something like 250 or 275. Mine started out of the blue - stuck - once when bending for the dryer, once when beinding to put a towel on my hair after showering - heat & bending over, sound familiar? BUT, I felt absolutely fine during both episodes. The EMTs made me sit down to hook me up, etc and I was like why, I feel fine. I have a friend who I recently found out also has PSVT (also from bending over), but has had it since her teens - and knows how to stop it (tho she did end up in the ER once for meds). She does not have POTS tho. I just want to know what the link is. My POTS and apparently yours, Cat Lady, started a couple years after the SVTs started........there has to be some clue there. Could others respond if they have a similar pattern?\ Started SVT or something similar in adult life, then POTS at some point (months, years) after.

Wow, can't believe you just quoted Josemaria Escriva. We know lots of people in the Work, and are somewhat involved ourselves...small world! Hard to keep the faith when you have so much suffering...definitely a mystery!

JUst wondering since it seems like a lot of us have/have had some sort of irregular heartbeat...PSVT, etc. Some have had ablations, some have not - I still wonder if my ablation contributed to my POTS (I have read how the sinus node ablations do, but otherwise they do not). Still trying to trace cause/onset. Very healthy.....about 30 yrs old and after 3 children, over the next few years in order: Migraines (monthly b4 period) ...........PSVT.............palpitations............at some point, dental novocaine starts to make me feel weird/wrong and I find out it has a med similar to adrenaline in it........................ablaton for PSVT.........pregnancy (harder than the other 3 pregs, which were a breeze, - tons of palps, odd, etc)............epidural (have had before) made my arms feel dead, I was very hot, and totally panicked for 2 hrs..................felt great while nursing................(seeming) POTS onset w/ tapering of breastfeeding (baby about 9 months-12months) - major heat intolerance/awful weak & revvy spells....visits to various Drs....finally my saint of a cardio-electro sent who literally wiped my tears away and sent me to Dr Grubb. Guess I'm just spilling my med history here...thanks for reading!

I have never tried this during a spell (I really lose my appetite too), but I will. In the last couple years, I notice I never drink hot drinks though. Just don't like it. I drink everything with tons of ice.

This is interesting. I don't think I have this, but I do picture my numbers (and days of the week, and months of the year) in a certain map format and have always wondered about that. Other people seem to have more of the standard numberline above the blackboard map. Mine goes 0-10 E-W, then jogs N to 11, E to 12, then N to 20, then E to 30, then N to 100, then all the way back S again to start over. So basically it runs E to W, backwards......days of week are backwards too w/ M-F in a half circle counter-clockwise, then Sat-Sun joining them vertically on the right. I always thought everyone did this....do they? I don't have any special math talents though - my 5th grader (8th grade math) has surpassed me easily...

Hi Lieze, Bev @ Dr Grubb thought I would be hyper, but my catecholamines did not show that - I looked at results - they were very normal...so who knows...

oh, and I have 1 daughter too - the 9 yr old