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Yuk, have had times like this...and then I think, oh why do I not get this by now? Have had a nice long remission-like period too, where I really did not get these symptoms....felt miraculous. Am a little relapsey now, but not as bad as before. It is so frustrating when it seems like you've made progress, then you get symptoms. Also frustrating when something that seems as simple as grocery shopping.....you know you have to be paced, otherwise you will regret it. I think most of my pacing is almost subconscious now - I just don't move as fast in general. During my lovely remission period (as I now call it) - last spring & summer (I guess I am still in it a bit as things are much better), it took me quite a long time to even notice I was better and could do more - since I had changed my pacing without even realizing it, so that nothing sets me off. You are certainly not alone! Times like that really set me back tho - hard not to get depressed - and the written word never conveys how scary that actual feeling was.

Anyone here try it? Did it help? Side effects? Addictive?

Just wondering if any seasoned POTSies can help me out. I'm curious if my symptoms can give me or Drs a clue to what type of POTS I have: **I do not get dizzy (I know this is supposed to be a hallmark of POTS) **I have 'spells' (this is basically the worst (almost only) thing my POTS consists of) that are like dying/weakness/chest pain/revved up feeling/just overall awful feeling (or some combo of these) triggered by overdo, bending too much, hormones, etc. they scare me to death, and i really can't function even though i can still walk around during them...never heard anyone describe their POTS like this except me. oh, they last about 1-2 hrs...and come at the same time of day usually.....like between 10am-2pm - lunch is usually an issue but not other meals (also, they can start coming on if I don't go to bed early enough, like between 10pm and 2am) - something odd and circadian about that I think. Major spells are **** (not many of these anymore), minor ones are nasty and still make me depressed. **I had a major heat intolerance, but that seems to be improved/gone. Praise God - it was ****. **Walking around helps my spells. If I go up the stairs, then immediately sit down....I don't feel right, like my heart/breathing are not in sync and can't settle down. I need to walk around just a bit to basically manually shift down to a lower gear....odd? **Klonopin helps a lot, but unfortunately, it kicks in right about when my spell would be winding down naturally. Makes for a nicer rest of the day/night tho I don't take it very often, no regular meds... Anyone relate....or do these things add up to some clue??

Hi, I have a lot of Braxton Hicks contractions - even starting at about 12 wks pg with me 4th. Have always had a lot. I never had the feelings you describe with them. I think I did probably have POTS or the beginning of it with my 4th preg, but it wasn't full blown til I cut down nursing him. My guess would be it is the POTS causing those other sensations. Hang in there - you don't have much longer to go!!

Brye, I sent you a PM. Your post is interesting tho - I don't nap, but I do find that that midday period - like 11-1 is not pleasant for me - somehow it is related to lunch/hunger/appetite/lack of appetite/low blood sugar feeling that is not actually low blood sugar/too full after i eat. It is odd - I do not have these problems around breakfast or dinner at all. Can you relate to this? Does anyone else have this strange daily problem?

Hi all, A little update - I have been in a bit of a relapse - just in the past couple of months. Still not awful tho - have had some chest pain 'episodes' - which I have described in recent posts. Still haven't had the major weakness episodes I used to have (those were terrifying & awful) - I might get a more minor one - still nasty, but not as bad. Not sure about the heat since it's not summer anymore, but I haven't noticed any intolerance. Have had a couple sudden spells - like walking thru target with 4 kids and suddenly weak & hot. But I took off coat and had my son push cart - felt better in a couple minutes - so I can handle that, but certainly not fun. Also have lots of PVCs recently. So, still a lot better overall than in the beginning of my POTS, but not as good as past spring/summer. Just the fact that I had such a great remission period gives me a lot of hope - and I didn't even realize how good it was until recently when I looked back at what I was doing - fast-dancing for at least 30 minutes at a wedding (out-of-state - having travelled and walked what seemed like miles the previous day with luggage!) - I couldn't do that now - or before that period of time either. Hopefullt, I'll get another great remission soon! I hope we all do - Brye - PM me if you want - I was also Dx after I had my 4th.

KeXia!!! We are all here for you. Your reaction is normal - I can't imagine your suffering. I do understand how POTS makes it harder to deal with the normal stressors in life - you know, when you think, well I'm not happy about this situation and get all motivated to do something about it - then realize you're sick - you can't do as much as you'd like - and have to depend on others. That part is very very hard. I think I would be in the same place right now if I were you - I am so sorry about what has happened. please know that there are so many of us out here who understand and care about you - I'm sorry we can't all show you that in person! And life is worth living......(I have thought of suicide in the past, I bet many POTSies have too). Thinking of you.

It is a hard thing to share with people. My family of course, and my good friends know - but even that was hard to tell - because people are very surprised you are sick when you're 35, look healthy, have great fertility, etc. It doesn't make sense to them. It is embarassing to me to have symptoms in public. But, in many ways, I think it has made me more humble and compassionate; I'm sure a lot of us have had this experience. I still don't like to talk about it - and actually only a couple of friends even ask about it - ever - I am so touched when they do. I will share things if someone seems really interested and concerned.

I hope this makes sense to someone out there. I think I have learned to compensate for this without even thinking about it. Often once I have done something strenuous (like coming upstairs to the 2nd floor - yes, this is strenuous for POTsies!....or come up from basement and continued up to 2nd floor), I can't just stop moving. I will feel bad, get symptomatic. I need to keep moving, but at a much slower pace. I feel like I have a manual transmission, which does not know how to change gears, so I have to do the slow-down gear - walk around a bit before sitting. Anyone else experience this?

HI everyone, Well, I'm fortunate that standing is not usually a problem for me - I don't pass out and don't feel bad unless I have already done too much or it is hot, etc. But, please don't feel bad about venting here - most people have no idea how it feels to have POTS - it is so invisible - and we usually look fine. Mt struggle is mainly with not getting depressed/anxious/sad about symptoms. I have 4 kids, so I do a lot (thank God that I can) - like go to the store with them, etc. It is scary though when I get a sudden 'episode' while walking thru the store: hot, weak, adrenaliney. My kids do know that I am sick, so they help if they can. My almost-11 year old son carries just about everything (and he is so skinny!) - loads and unloads groceries, loads very heavy things, like 24 packs of water - onto cart, etc. They don't have much choice but to help - and I suppose they are better for it. But, I do get very crabby...um, actually I would call it nasty...with others, with the kids, etc - hard not to have a short fuse when you're ill - or even just when you're scared you're about to become ill. Living in Chicago with the cold/snow and 4 kids is not easy while living with POTS. I am very thankful to be able to do what I can do - and that I realize I had a nice long remission this spring and summer (still do to some extent - just somewhat relapsey) - I even fast-danced at a wedding for at least 30 minutes - and kept wondering why I didn't feel bad - can only see these periods of time in retrospect tho - I had fewer than 1-2 palps a day for a few months! Now I am back to.......maybe between 15-35/day that I feel. Anyway, please don't feel bad about sharing these hardships - we all understand!

I hadn't noticed the coat hanger pain until some way into my POTS Dx. For the last year or so, I notice (and my husband has noticed and asked what I am doing even when I don't realize) that I stretch my neck by pulling my head forward/down....because of pain in the back of my neck - up into the back of my head and somewhat in shoulders. Well, I guess I wouldn't really call it pain - more like soreness/achiness/tightness. Feel that I need to stretch it out all the time - and this is more so (I think) at times that I am somewhat relapsey (sorry to make up words).

also, this does sound familiar: "The thing that really gets me bad is the restless feeling, like I'm trying to crawl out of my skin, and it makes me want to SCREAM, " also, I do feel sometimes a strange tightness/fullness below my chest....maybe diaphragm/stomach - but very much in the middle - like a couple of inches under where my breastbone ends. very uncomfortable, tho it does not worry me as much since it is not accompanied by the general unwell feelings of my 'episodes'. I feel the need to push on it to make it feel better. This does seem somewhat related to eating tho - but I don't know what it is. I have also had a similar feeling in (I think) my diaphragm like it is tight or not getting enough oxygen - this one is disconcerting, but not like the episodes. Sorry this is also vague - POTS is bizarre.

Thanks for all the responses! It does worry me that it may be/is my heart. Yes, I've had lots of tests, incl stress echo a couple years back. I don't think it is just a chest muscle thing (wish I could say it was), because of the generally bad physical feeling I have along with it. Like one of the reponses, feels like gas and brake pedal on simultaneously (this is the case w/ most of my bad POTS episodes of any type). I think if it were a chest muscle pain, I would just feel it there, in my chest, and not have the urgency to BM, walking urgency, and general lack of concentration. I have often wondered (this will sound strange) if maybe there's too much blood getting to my chest - esp bc I have problems when I bend over too much. I can bend over a couple times, but if I keep doing it, I realize (too late), I've made a major mistake and started myself on a 1.5 hr episode of strange chest discomfort/pain with the other general feelings I have described. This would be the opposite of angina, however, as I have read that bending forward can help angina as it sends more blood to the chest/heart area. (you may wonder why I don't stop bending over....I have 4 kids and a lot of housework....so I try to be aware, but sometimes concentrating on a task and momentarily forget that I have to keep my limits in mind!---as time goes by this is easier, as the consequences are nasty) Feel like I am rambling - these symptoms are so hard to describe.

i am the only one in my family (no siblings) with POTS. mom, dad and everyone else in extended family fine. so far my kids are fine too...

I'm a smoker - I sometimes smoke when having a bad spell - it does help me - not sure if physically (maybe raises bp?) or just mentally lowers my stress level. Not saying it's a good thing....but has helped me in stressful times - it is also anti-nausea for me.

I don't get extended ones, but I will say that I can relate to what you call the GIANT one. Whenever I get palps, the end of it always feels like a big thump (I like this bc I know it has ended). Cardio explained why it is a big thump to me and it made sense, but I will not try to explain here!

Oh, and I can't concentrate during these spells. Not sure if it is because I am so tied up mentally worrying about how I'm feeling or an actual physical reason. I usually walk around, then flit from one little thing to the other (like putting a book away, then typing email), then sitting and watching tv, etc. Strange??

OK, I seem to have 2 different types of 'spells'. 1) One is weakness, dying feeling (had this commonly at beginning of POTS, only a few minor ones of these recently) - thank God - these are the suicidally depressing type; 2) the other is this chest pain/discomfort/fullness. I have the chest one now - it is usually precipitated by certain things, bending over too much, etc. Not sure what brought this one one. The thing these 2 types have in common is that they both last about 1.5 hours. Unfortunately, the worry/crying/depression over them can last 1-2 days after. Klonopin helps symptoms and feelings. I will describe the chest one more: usually starts with a very urgent/intense feeling in chest and also usually GI - have to go to bathroom, feel full, very adrenaliney feeling. Go BM usually....feeling urgent/panicky physically - trying to control mental panic response since this has happened many times - I *think* I am getting used to it. Then the chest part......middle of chest/more left pain?/fullness/discomfort/tightness - right now it also feels it is going through all the way to my back. It is not some intense extreme pain - just scary and very disconcerting. I am about 45 mins in, and know it will go away as it has before. Anyone have this....or know what the cause is??????????????????????????? Oh, and walking around - not fast tho - actually helps both types of spells (I know, counter-intuitive and odd) - also walking around helps my migraines. This has to be some sort of key here as it makes me think the walking is having some vascular/circulatory effect....any thoughts Also, I can't sit still or lie down for too long (tho sometimes I feel like it and need to)- doesnt help symptoms, and I can't stand it - maybe bc I need distraction, or because I need to walk to help symptoms....does this make sense to anyone???

http://www.theglobeandmail.com/news/nation...article1372414/

Erika, You are not alone - and I am intears reading your post. I am a mother of 4 - my youngest was a little over 1 year when I was diagnosed and life basically fell apart. I am thankful that I have a loving husband and we have made it thus far.....in sickness & health. But many times I wanted a real Dr House (we love the show). My diagnosis took a few months, thanks to a very kind and humble cardiologist who sent me to Toledo to Dr Grubb. My condition has improved (partly management and partly higher thresholds for certain activities- I think), but it is still depressing - and worrisome. There were many times (and occassionally still are) where I don't think I can take it anymore. I kept going bc I love my husband and kids...but many times have felt guilty bc of a short fuse due to symptoms or anxiety about symptoms. It is a very cruel illness. Glad to be able to share with all of you - this board has kept me going during the beginning/worst of my symptoms. I think only those with chronic illness can fuly understand that the feelings/anxiety/guilt, etc that accompany the symptoms are almost harder to deal with than the illness itself.

Just this wknd, I started to get this weird feeling off and on - and today more so. I am not nauseated or anything. I just randomly get that feeling you get before you throw-up - when you start to salivate more. I feel it under my tongue generally. It is very very annoying and somewhat worrisome. Hope someone out there can shed some light on this fun new symptom!

WEll, looked up Variant Angina - which doesn't seem to correspond with what I have - as mine has actually come on after exertion. This is what concerns me - anyone have an explanation for this or have experienced it??

Glad to have found this post. I have had what feel like angina episodes (for years, off and on)- they do usually come on after exertion, anger, etc - which worries me a lot; but they last 1.5-2 hrs. I also feel anxious, digestive upset - like need to go to the bathroom, etc. I cannot sit still though! I have to move around at a slow, regular pace - I usually just tidy up the house very slowly. I thought I was just distracting myself so as not to get more anxious, but it seems to help the chest "feeling", which is very hard to describe. Anyone have the same experiences? I am almost 35 and have echo, stress echo, holtermonitors, reveal, etc that never showed anything but my lovely regular PVCs and rapid heartrates.

Hi all, JUst dropping in to say hi, and share my good news (to give hope to some of you maybe!). I was on here in late 07 and early 08 (was diagnosed by Dr Grubb in Feb 08). My POTS was postpartum (and I think somewhat before that...timeline: PSVT, PVCs, ablation, pregnancy) - my hellish time being when I cut down and then stopped nursing my then 1 yr old. I really thought I would NEVER be THIS much better. I still have POTS, but it is recently very mild. No, I could not do exertional exercise for any meaningful period of time, but can do what I need to do in my house and for my 4 kids with virtually no problem. This was not the case befor. The best news is: I used to have EXTREME heat intolerance - I would easily get too hot and apparently had no internal regulation (had to try to get in the freezer or right next to the AC for a long time - and that still wouldn't fix it), and felt like I was dying for about 1.5 hrs (the average length of my 'spell' - also brought on by exertion and hormone shifts). Just recently we have had temps in the 90s (yes, in Chicago!); since I have been ok, I decided to get over my fear (of having a terrifying spell while driving 4 kids around in a hot car). I have been FINE. IN fact, this morning, I was cleaning out the deck box - a very gross deck box by taking out the toys and cleaning them - bending over -= and doing this in the sun for a good hour and a half - dripping sweat. I felt great - I just keep thinking this seems like a miracle to me - I was enjoying sweating profusely (before I would get so hot so quickly I never even got to the point of sweating). I do have Klonopin and take .25 mg when I have an off day, or feel physical anxiety (a POTS symptom for me - dont know how else to describe it), or when I have a minor spell (none in a few months) - like 20% of the intensity of what I used to have and very rare. I probably take it only once amonth at most. Oh, I have had a lot of PVCs recently - like probably up to 20/day on bad days - but it almost seems like my symptoms are going in reverse from my onset - strange, who knows. I can pretty much blow them off and move on as long as they feel like what I am accustomed to and not some weird new thing. Just wanted to share my good news - I hope it gives some hope to some of you who may be going through similar things. We are blessed to have a forum like this where everyone is so kind and understanding - it really sustained me through the worst times - to have people who understood. Thanks to all who were so kind and took the time to reply at my worst time. Maggie PS also just realized I have not had the migraines as regularly (they started before the PSVT and were once amonth before my period). I still take the Fiorinal if I am getting one - but can only remember one in the last few months. One other note, I do not like meds at all - it helped me to get over that a bit - I take Klonopin if I need it - and Fiorinal at the first sign of a migraine - and don't worry about it.

Wow - so may of these sound so familiar I had to reply. I have been feeling VERY normal for a while now, thank God. Haven't had a real episode in 2+ months. Did have a little weakness episode recently on 1st day of period but took a Klonopin and slept for 2+ hrs then felt better. My hormones seem to be the main trigger for m y POTS - even though I am very fertile and very regular and only 33. Sometimes wonder if my progesterone is unusually high. I second the response that no wonder we are all searching for a cause other than POTS since our symptoms are so different. I felt earlier on there had to be another cause, but whatever the cause for all of us, realize now that all these vaguish strange symptoms add up to POTS. Also, Tammy, I really identify with your symptoms, except I have a few other minor ones like chest pain and palps (separately), and my weakness episodes are not quite as severe but always seem like they're about to get a lot worse.