mvdula

I am positive they are related to dysautonomia. I started to get PSVT (only a couple times, then ablated) and PVCs (and a few PACs) around the same time. POTS Dx a couple yrs after ablation. I am certain that my SVT/PVCs/ablation are somehow related to my POTS....I did NOT have POTS symptoms when I started to get the SVTs. Can't figure out how it is all related though - I actually think in my case that the ablation had something to do with me getting POTS - even though all the Drs tell you it did not since they did not mess w/ my sinus node at all. I just don't see how I could go from perfectly healthy til around 30, then SVTs and PVCs, then ablation, then POTS. Must be related. I get them in bunches - like up to 30/day that I can feel....for maybe a period of days or weeks, then they go down to 1-5 a day for other periods of time. I don't get why.....it is one symptom that does not seem related to my cycle. I had TONS during my last pregnancy, during which I may or may not have had POTS...not sure about time of onset-- especially during 2nd and 3rd trimesters - so many I had a Reveal monitor implanted! But they showed to be just PVCs and PACs - I have had a couple of very werid things that did not feel like PVCs and were never caught on monitor - VERY scary and lasted much longer. Thank God those were only a couple of times.

oh my goodness, hopeful. i have been there so many times...I mean various episodes that left me terrified and in tears....then depressed for a while after. so sorry you are going thru this. I can relate to your last line too - pls God, just make it go away...

Hi Garrett, I don't have this symptom, but do have something I have been wondering about. Dizziness is not a symptom of mine, and I do not pass out, but....occassionally, I get a ringing in my ears (sudden and short-lived usually) that is often preceded by a feeling that I have lost sound in my ears - even though I haven't completely - almost seems like a pre-passing out sensation. Does this sound familiar to anyone? Or is this a pre-passing out feeling?

Ah, I love House, but we haven't been watching this season - too bad they got it kinda mixed up though. More POTS episodes please!!

Since I'm always looking for answers about why/how I got POTS (don't think I had this all my life).....I always think it must have something to do w/ the SVT and ablation I had a couple years before I was Dx w/ POTS. Just came across this link, when looking through old posts: http://jnnp.bmj.com/content/81/3/339.abstract Seems to support my theory for those of us who had POTS come on after ablation. Could the ablation have damaged some nerves in/around heart??.....even in some delayed way, since most of us in this boat did not see POTS symptoms immediately after... does this ring true to anyone??

I don't get any rashes or visible reactions, but I can't stand to be in the sun very long. Just feels WAY too hot for me - different from heat.

Well, just want to say...I wonder about this too. Haven't taken bp/hr in a long time, but when I used to.......it did not always explain my symptoms or lack thereof. That's why I agree w/ the poster who said (in another thread) that there is something the Drs/researchers are missing here. The only way I can reconcile it in my mind is that the hr/bp fluctuations, like on ttt, are just a clinical marker that Drs can use to Dx POTS (and they do sometimes account for some symptoms).........BUT that is not all that's going on with us. My episodes are not explained by hr/bp...at least not completely. PS I was also suspected by Bev to be hyper-POTS, based on my description of symptoms....but my catecholamines did not show that. I liked Bev, but seems to me she suspects this far more often than is the case.

Oh, and I have had countless EKG's, a holter monitor, an implantable loop recorder, and an echo stress test a couple years ago. All were fine....so as much as chest pain makes me very nervous, I try to remind myself I have had this checked out many times by good Drs......

Thanks, bellamia. You may be right about this..........could be heartburn - I did have a little more than usual today too - that could have been why it doesn't always cause it - I don't usually finish my small serving. But the bowel urgency and all-over revved up/urgency is still a question. I guess the coffee/caffeine effect could have hit me at the same time causing me to need to go and feel all revved up. I guess this SENSITIVE system thing is really true and I need to be more carfeul. It just freaks me out - as I posted about the other night and my *unprovoked* weakness spell, I worry that no matter what I do, I will have these weird and very scary symptoms in the middle of various activities. I would prefer to have control over them, at least!

Today, while sitting & talking in a group of moms - in my own house, had probably been sitting there at least 30 mins when this happened, I started to get chest pain - it started and got worse and subsided in probably 5-10 minutes or so. I was not doing anything but sitting and talking (I talk all the time, and it does not bother me). It was weird, and came on at my usual 'spell' time - about 11am. I was drinking coffee - which I usually do (only a little bc it's iced and it's more cream than coffee). At the same time, I started to get uncomfortable down there, like crampy, urgency, like I needed to BM......but the chest pain made me way more nervous than the BM feeling. I had a general urgent, revvy feeling overall too. I just sat there and continued (and rested back in my chair a bit - didnt go to the bathroom) until it passed. I have had these feelings before together (tho this chest pain was nastier than usual I think). It doesn't make sense to me that bowels & chest are so connected though. Wouldn't I have chest pain only if my digestive trouble were higher up, i.e. my stomach, indigestion, heartburn, etc?? Can anyone share their experience or theory?

Since I have been somewhat relapsey in the past few months, I have been trying to remember what (if anything) I was doing differently this time last year, when I had a very nice remission period...for months. It may be inconsequential, but the only things I remember are: I started taking Vitamin D - D3 1000IU I think, and I often went for walks - slowly, average speed maybe, I can't do any type of power-walking or would have a nasty episode, I'm sure. I was walking often though, in the evenings, slowly with my youngest child, or all of them...if I can get them not to run ahead too far. I did take pretty long walks though. So, we shall see if this makes any difference. It can't hurt. Last night, just as we had sat down at a restaurant, I had a completely unprovoked weak spell. It was not hot, I had not been rushing, nor doing too much. So, I am very depressed by this, as now I am worrying my symptoms are unpredictable, and therefore I can't control them. I suddenly felt hot (it was not hot in restaurant) and very weak. It is strange though - my husband asked if I wanted to leave - I said no bc really lying down at home makes no difference for me - walking usually helps actually. Despite the weakness, I was able to sit & eat my dinner - I was hungry still, which is a bit odd since usually my appetite disappears once the weakness starts. I just kind of stare off and don't say much, maybe bc I am upset, maybe bc I don't feel up to talking. It is so obvious though, that my 11-yr old son asked if I was feeling ok. It lasted about 1 hour. Does this type of episode sound familiar to anyone? My heart was not racing and weakness/heat were really my only symptoms.

I had had dental work for years w/ no problem. After my POTS started (didn't know I had POTS yet, just various symptoms came up and this was one of them), I started to feel funny after the novocaine injection. My knees tingled, just felt weird and panicky overall. I just wrote it off as anxiety since it subsided after a few minutes. I finally read about this after finding out about POTS. I just asked my dentist if he could give me the Novocaine minus whatever type of adrenaline-type agent that is usually in it. He does that now, and I have no problems. Just recently had a filling, and no problems. Hope this helps.

Lying down does not relieve my symptoms. In fact, walking around often helps. I am unable to do exertion though. Dizziness is not one of my symptoms though.

Ttracy, I also feel fine once the spell is over. That always seems odd to me....though the spells usually last up to 2hrs (max) depending on severity.

I posted about this in another thread just now, but thought I'd start a new topic: Last night, about 1am (I know, staying up too late), right as I was about to go to bed, I got a sudden weak episode. I went up to bed and was in/out of sleep for a couple hrs before I started to actually sleep soundly. During this time, I feel like I am just very weak/dying. It happens very suddenly and often happens if I am up too late. My heart was not racing or pounding at all. This also tends to happen (it varies in degree) around the same time of day (tho not every day, yay!)....maybe btwn 10am-2pm. So, between 10am-2pm and 10pm to 2am (those are just approximate) I am prone to these weak spells. I can bring one on by doing exertion also or major emotional stress, but at those times of day, they can come on w/o provocation. Some are mild, some are severe - and I am REALLY scared by them - I do feel my body is just literally going to stop. Also, some have the racy/wired feeling w/ the weakness; sometimes just the weakness and dead feeling. I think someone (can't remember who, sorry!) said she felt like she couldnt get up and run out of the house if it was on fire. That's how I feel. I have also had heat intolerance, but last summer was much better/almost gone. I have had morning cortisol on the low end of normal a couple years back, but my stim test I passed w/ flying colors. Doesn't this sound like some sort of cortisol issue though? It seems like that now to me because it is triggered by stress, or by a certain time of day (weird cortisol cycle??) My hormones also affect my symptoms, and I do NOT have dizziness. Any thoughts? Anyone w/ similar symptoms and any light you can shed on role of cortisol/treatment?

Hi Tammy, I'm just responding because I have those super-weak spells you describe. At this point, that is my main complaint....I can do a lot of normal things, but once one of these hits, that's it. Last night @ 1am just before I was going to go to bed (I know, up too late) it hit me. The sudden weakness......so I went up to bed, but ended up just feeling like I was fading/dying/weak/distracted and went in & out of sleep for at least an hour before I could really sleep properly. I would really love an explanation of what is happening when I get these spells....it is not tiredness. Also Tammy, I have a lot of your symptoms.....the over-reaction to adrenaline - discovered that at dentist visits, etc etc. Think we have a lot in common. Same on the cortisol a few years back before my POTS Dx, my morning cortisol came back in the low part of normal range, but the acth stim test went fine.....seems to me my cortisol may be dropping/unable to go up at these weak times - my weakness is not related to hr as it can be fast/slow pounding/calm, it makes no difference to my weak spells.

My DH is definitely like that....I guess he feels he can't do anything about it - he'd rather solve it but can't. Also, in the past, he has seen it as complaining. I always joke that when God made him, He forgot to add sympathy.....he is not exactly sensitive and sympathetic. However, we have had many discussions about that since my Dx, and he is much better than he used to be. He realizes he needs to work on that and tries to listen and be understanding.

I also drink iced green tea...but I put sugar in mine.

Hi, I posted about this a few weeks ago - I do feel better w/ a couple glasses of wine. Seems to me it just calms my nervous system.....I guess.

Hi lavendar, I have a hard time dating my POTS onset bc I didn't get Dx until my 4th baby was a little over 1 yr. So, I suspect I had POTS before I was pg with my 4th, as the pg was much stranger/harder than the 1st 3, including massive #s of PVCs in last trimester. I had epidurals w/ my first 2 kids. Fine - no POTS then either. No meds with my 3rd - no POTS then either. Best birth I ever had (despite the delivery pain!), epidural w/ my 4th - nasty, nasty reaction. As soon as it kicked in, I felt very hot (could not cool off, and the ice they put on my neck did very little to cool me off), wanted to leave the hospital, my chest & arms felt dead, and was very panicky bc of this. The Dr, anesthesiologist, nurses were very concerned since I was so upset, so they stood around and stared at me a lot, monitored my hr and bp, which they said were fine (I wasn't looking at the #s), and gave me Benadryl, so I was able to oscillate between sleep & panic. Not fun. It wore off after about 2 hrs (since the initial dose takes time to wear off, and they stopped administering it after I started to have reaction/get upset), at which point I had the baby - that part was actually relatively fast and I felt fine after. But I do not want to relive that 2 hrs. Ever. I don't want to scare you as I have read other posts of POTS ladies who seem to have had no trouble w/ the epidural, but I never plan to have another one.....hope this helps you, and doesn't just scare you!

Anyone else have low grade chest pain/tightness/fullness for days at a time? Actually it seems to increase w/ stress too. I have had this before, just wondering how common it is among POTsies, and if anyone has a guess at what causes it.

bumping this up - please take the poll if it applies to you!

Hi sj, Please vote if one of the options applies to you....I am curious to see how poll turns out!

I get what I would call a brain-zap (not on any regular meds). Occassionally, when I am going to sleep (and a few other times), I'll get a zap kind of feeling....really feels like it's in my brain. I think I can actually feel it, hear it! and see it! Like a little bolt of lightning (flash) with the zzzz electrical sound in my head. Very split-second, not very long and I feel fine, but really weird. Anyone else get these....they seem more than a little odd to me.

INtersting that you mention the exercise intolerance. I have that majorly now. Never had it before except what you described. When I was younger (and I was a gymnast, so had no trouble with that...but I don't really qualify for EDS) I could not run long distances - would just get pain in my side and couldn't do it - but didn't feel bad, just couldn't keep going - I vividly remember the 8th grade hiking trip with a 30lb backpack (I was 90lbs then) - I kept having to stop...wondering why everyone could just keep going, including the track star in our group - who was about my size! But I didn't feel awful like I do now with exercise - I just couldn't keep going. But I always moved fast, and rushed around - that was not a problem.....that has been VERY hard to adjust to...it's like trying to change my entire personality. When my SVT started around 30, my PVCs also started. Had the holter, then the implantable loop recorder, which never showed anything but PVCs and tach (after SVT ablation).