mvdula

just had to say - i have actually never heard that 'rather crude' expression - but it is so true - puts everyones' opinions in to perspective!

I felt fine - I just stayed in the outpatient recovery room (the one with many people and just curtains separating rooms!!) for 1-2 hrs I think - but was just sitting there having some drink and crackers (since you can't eat before) - and they tooko my IV out - and Dr came to talk to me, etc. I was just nervous during procedure - because I tend to get scared and anxious - but that's just me. Because it was just local anesthesia, there really is not much 'recovery'.

I had one for about 18 mos (that is about the battery life). It was done under local anesthesia both times (to put in and take out). I just had an IV for fluids and preventitive antibiotics. Actually, when I had it put in, I was pregnant - and had just finished nursing when I had it taken out. It is very small (I am 95#s and flat-chested!!) So, not a big deal really - and I am an anxious person. I love my cario who did the procedures tho. Mine did not show anything dangerous - it is set to automatically pick up certain things, like if your HR is too fast or slow - and they can change the settings. You can also tell it to record if you have a weird episode - by using a handheld little remote thing. Mine was set only to record one of these per month - and I think 13 auto episodes. I assume they might be able to change those #s tho. I went in about once a month so they could get the info from the Reveal - super-easy - sat in a chair and they put a thing that looks like a computer mouse on your chest and it reads everything. The only thing mine ever showed was PVCs and lots of tachy - didnt know I had POTS til about when I got it removed. Hope the info helps!

I've never tried Ambien, but I was prescribed Klonopin (Clonazepam) for anxiety. It works great for help sleeping. I use it maybe a few times a month - I can take it during the day or at night. During the day, it does calm you down if you are having a very anxious time (mine manifests very physically, like no appetite, etc) so I really need it to get back on track. Also, I have never had problems sleeping until recently - and only occasionally. If I have a night or 2 during which I wake up - or wake up in the morning feeling bad/anxious/uncomfortable instead of relaxed, I will take a Klonopin the next night to break that cycle so I am not sleep deprived/more anxious. It works great in either case - makes me feel calmer/relaxed/sleepy - but not fatigued - it is a good feeling but doesn't change my personality or make me wake up groggy at all. I am very happy with it - and it is worth taking - no side effects for me. My Px is .5mg - but I take only .25. I never wake up at night if I have taken it - and it makes getting to sleep very easy. It is the only thing I take now - except for my once a month migraine med. I know Klonopin is addictive, but since I use it only as needed - and it really helps with quality of life, it is well worth it. My 30 day Px of .5mg lasts me months - maybe a year.

thanks for the reply - then, no i am sure i have not had any more psvt - yes, it was VERY different - could defiinitely feel sudden 250bpm. so, that's not what's happening now at all. just that when i bend over many times or do harder work while bending (i.e. trying to get the suctioned baby bathtub seat off the tub - this always gets me) - my chest feels bad for a while - like 20 mins or so - just a very intense, uncomfortable distressing feeling - not exactly pain but somewhat. i just try to bend and do a few things - or sit down to do work like that. i wonder if it's even my muscles in my chest. i also get chest pain/discomfort from anxiety and from hard work with my arms - carrying heavy groceries- opening a few hard-to-open windows. So, maybe it is muscular. But, even just bending a lot w/o the hard work makes my chest feel a lot of pressure inside - like the way your head would feel if you did a headstand - like too much blood in my chest???-anyone have any ideas why i get this pressure feeling - it is bad enough that i stop. Thanks again for the response...

when u had the second SVT - did it feel like svt? i mean mine before - i knew what was going on - sudden supersuperfast rate - like 225-250 out of the blue. so very obvious - i feel nothing loike that now...

thanks cardiactec - i was hoping you would answer! I did have a reveal for about 18 mos and nothing ever showed up but pvc's and sinus tach (they always said "when do you exercise" to which i said "i don't but i have 4 kids") i was not diagnosed with POTS at the time, nor did i really have symptoms until the last few months with the reveal.

I had a successful ablation for PSVT back in Sept '05. One of my SVT episodes (and I think the other one too, but can't remember for sure) was triggered by bending over. I now have a problem with bending over though. I can bend over once or twice fine, but if I keep doing it - like picking up toys off the floor - or picking up trash in the yard - I feel ok at the time - usually some pressure in my chest but ok. After though, I have this very unpleasant feeling - hard to describe, of course - that lasts quite a while - maybe from 5-30 minutes. It's like a pressure or I usually call it an 'intensity' or uneasiness - somewhat tachycardic. It is very noticeable, a little distressing but not too bad, i.e. I can keep functioning, but usually I sit down relax for a while. I just wonder now if it has something to do with the ablation since my SVTs were triggered by bending over and now since the ablation, maybe my heart is confused or something???? since no pathway there since it was ablated??? Maybe that makes no sense but I think it must be related. I never had problems bending before - and noticed the bending thing sometime after it - mentioned to doc probably 1 1/2 yrs later - (but had been pregnant 2 mos after ablation, during which time bending is uncomfortable anyway so not sure I would have noticed til later). Any thoughts?

thanks tearose. here's the problem. my triggers are not as predictable - when i have an episode, it can last up to 2 hours. sitting down makes no difference. i have no way of helping myself feel fine again - i just have to try to get through it - which is a very scary nightmare....and i know, it doesn't exactly sound like POTS - possibly some related type of dysautonomia

this is an interesting thread - for me, i think there have been both physical and mental components to the anxiety. i did become anxious and panicky when i started having scary symptoms without knowing the reason. Having a reason helps, but does not take away all the anxiety at all. Anxiety/panic is our natural reaction to danger. When I am very symptomatic, I do feel in danger. I think it is natural to respond this way - the way your son did on his TTT. I am confused by tearose, who said she is a thinker and not an anxious type of person. Well, I am both. Very much a thinker - but the past year or so (and even before that with my SVT), I have become very anxious because of my symptoms. Personality certainly has a lot to do with it, but that is not all. I have learned to deal with the mental anxiety better. But, as I said, if your body is not working properly, it is very natural to have both physical and mental reactions to that - and that is the way your body was made to react - to keep you out of danger. It also seems to me that we all have different versions of dysautonomia - I have had times where I felt my anxiety was purely physical - as if it is actually a physical symptom of POTS - I have heard this echoed by many other people on this board too. Just another testament to the fact that we all have our own version of this awful thing.

just wanted to say that i understand the anxiety reaction to symptoms - i can get very anxious and almost panicky when i have symptoms. i have also had times where i felt the anxiety was very physical, i.e. not related to my thoughts but started in my body - so sometimes not sure which is which! all i can say is i sympathize!

sorry i can't offer an explanation - just wanted to share that i have the same questions about why certain activities make me feel worse than others - even with the same heartrate. it is very odd. i don't have your low bp symptom - but still have many weird episodes that make me want to go to the er. I don't usually go though bc I know it will be a lot of waiting, tests, etc - and the er is not a relaxing place - I would rather be at home! just wanted to say i sympathize and sorry i can't offer more answers - not sure anyone can - dysautonomia is so weird!

tearose - thanks for the great suggestions. my kids are in school when i am out and about with toddler - so i am on my own. they help a lot when they are around - esp around the house doing harder work i cannot do. still, i think the summer heat may be too much for me too handle - esp mid-day. thank God I do not live in a hot climate, so hopefully this summer won't be too bad.

thanks for all the replies - it does help to know there are quite a few of you out there who experience the same thing. My question now is: How do you deal with it??? I'm not sure the fluid-loading or even eating makes any difference for me. What do you do when that feeling hits you while you're shopping? Doesn't it scare you? It really scares me and leads to a lot of panic and anxiety - partially because I have a toddler with me most of the time I am out doing errands. It really scares me that I could feel this bad - and have to finish shopping, drive home, etc. all with him with me.

Thanks for replies. Mine really started more postpartum (though I did have signs during pregnancy). About 9 months postpartum. I am now 19 months postpartum and still miserable. But also questioning my POTS Dx since I do NOT have many of the symptoms of other POTS patients....just my awful episodes. It is miserable though. From what I have read, there are a lot of auto-immune problems that can be triggered by pregnancy/postpartum states. Wish I had known that....

I get this often - it is a lesser version of my awful episodes (which are precipitated by exertion). I get it almost always late morning. Feels like hypoglycemia - empty stomach feeling, weak and a bit shaky. It scares me. But I am not hungry and do not sweat. I wonder if I have a weird cortisol pattern, because when I was tested around 9am, it was w/in normal range but low for that time of day. BUT when I had my ACTH stim test, it was done aound 12:30pm - my cortisol started high for that time of day. That is usually when I start feeling better whether I eat or not - around lunchtime - after the late morning episodes. Anyone have ideas why this is? Thanks...

Wondering how all of you postpartum onset POTS people (nice p alliteration there!) are doing?

Thanks for all the kind replies....

Yes, my cortisol was initially slightly low, but when they did ACTH stim test, my cortisol started around 20 (high!?) and went up to 34 at 30mins then 31 at 60mins. So fine apparently. They say thyroid is also fine - only results I have seen are TSH 1.118 (range .35low-5.5high). Seems maybe pituitary to me.....??

Also, these problems started about 9 months postpartum (when summer started and heat got to me)- with more extreme problems around 12 mos postpartum. I am sure the postpartum state has something to do with it. My endo tests appear normal so far, but I feel strongly that something endo is wrong - which is especially common postpartum apparently.

HI everyone, Well, I have to wait 4-6 months to see the neuro my Dr is sending me too. Hopefully, he can send me to someone else sooner. I really feel something else (not POTS) is going on with me. I have no trouble standing, no dizziness, etc. Walking is fine, etc. My main problem is: anytime I do any type of strenous, i.e. intense at all, exercise/exertion, I very soon feel extremely weak, shaky, wrong - feel very much in danger and sometimes like I am going to die (yes, I have anxiety, but that is not the problem). This feeling can also happen if I get too hot and has even happened after emotional upset. Basically any intense stressor. I am NOT out of breath, my muscles work fine, I do NOT flush - but do feel hot flash sensations sometimes. Just this awful (feel suicidal because of it, if that tells you how awful it is) weakness/fatigue/shakiness. It lasts anywhere from 10mins-2hrs and is hellish. Have had different grades of it depending on how much exertion. Almost feels like hypoglycemia but without the hunger and sweating (NO appetite during these) So, basically extreme reaction to heat or exertion. I have no other major symptoms. My chest pain seems muscular and unrelated to these episodes. My PVCs are also unrelated. I have written about this before......just don't have any answers and it has ruined my life. I cry off and on for 2 days or so after each of these episodes bc I am SO scared by them (NOT bc I am depressed, just bc they ARE scary). If they don't happen for a while (I avoid things that cause them as much as possible), I am fine. Please help me.

I have never taken Norpace, but have been prescribed Coreg (also a heart failure med) by Bev, Dr Grubb's nurse. I have not taken in yet and am very hesitant to take it especially since my tach is like 110-115 - not that high in my opinion....

Well, I have some hope again for the moment. I saw a new GP - who is very good - actually listens to what you have to say! He is sending me to a group of neurologists at Rush, since he thinks my presentation is very unusual. Yes, I know - I need Dr House. Anyway, he is also going to consult with my cardio ep and my endocrinologist. Wow - thank God for good doctors. Hoping I have some answers soon.

OK, responding to old post since SOME of this is familiar to me. My 'episodes' are by for the WORST part of POTS -leaving me crying and not wanting to live anymore. That tells you how scary they are. Mine feel like (some are minor only a couple minutes, some are major up to 2 hours w/ poor sleeping later that night): suddenly hot (or heat surge), then weakness that I cannot describe - I CAN do things but feel like I am in danger and need to call someone to help me take care of my 18mo old, maybe a bit shaky, fatigued, sometimes need to bm - but not usually, need to walk around house and sit (and smoke - no lectures pls) intermittently until it's over. The only thing it feels a bit like is hypoglycemia - BUT I have NO appetite during these episodes. Today, it was brought on by a short, slow walk around the block. Felt fine, then when I got in and started making lunch for son, the 'episode' hit me. It is sometimes so bad, I feel I should go to ER, but can't do that all the time. It always passes. I took a Klonopin this time since it's so distressing. Sometimes I can do a lot without getting one of these. During it, I sat down to take hr/bp. They were very normal for me hr 96 (normal for me) bp 117/21 or so. WHY DON'T MY VITALS REFLECT WHAT I AM FEELING? WHAT EXACTLY IS CAUSING IT THEN??????? As I said, these episodes are SO scary that I always end up crying after they are over, and literally thinking I do not want to keep living like this - I say this just so everyone understands how bad they are - and how can I tell myself - oh, pots is not life-threatening when my own body tells me I am in danger??????? sorry for the rant

I'm so sorry things are so hard for you right now. Even though I have not been through a major surgery like that, I can empathize with your feelings wondering about how much longer you can go on like this. I have thought that so many times, and have only been sick for 6-7 months. For some odd reason, I have felt completely normal for a little bit now - I have no idea why, but hope it gives you some hope. I pray you will find improvement very soon. I did see Dr Grubb's PA, but personally did not think her assessment of me was accurate at all. (I am not so sure about the POTS Dx at this point though anyway.)I am sure Dr Grubb would have been great though. If you do make this trip to see Bev, maybe go on a day Dr Grubb is there (I think Tues and Thurs). Then there is a chance he might have some time to stop in and see you. Please feel free to PM me if you just need someone to listen!! Maggie