mvdula

Kitsakatsa-- You are so funny - thanks for the laughs!!!!!! Futurehope-- Such fantastic advice. Very true - no one really knows what anyone else is going through. I struggle with this, and I agree with Macks Mom that being clear about what you can/can't do w/o making a big deal is a good plan. It does work for me - I find it easier to tell friends ahead of time what I may not be able to do - that way, if I flake out, they know why - also, when I am symptomatic, it embarasses me, so it's very hard for me to say anything at the time unless I have already explained it to that person.

Oh, I can relate to everything you've said!!! I just kinda wonder if there will come a time when I can accept it and not be so angry about it anymore. I really just feel so angry that I have POTS and that it is so unfair. Fortunately, my husband has learned to be much more understanding, and my friends are very understanding about it. That helps, but it is still very depressing that I can't/don't/am nervous about certain activities w/ the kids, etc - it all depends on the heat, time of day and activity level whether I decide to participate or not. It makes me feel guilty and sad and angry when I can't join in (or take them somewhere)- but if I do too much, I know I will regret it later. Actually, I have found I have an emotional pattern during the day that corresponds to my symptoms generally: morning: good, happy, energetic---lunchtime: low energy, hopefully not a nasty spell, depressed and sad---dinnertime: better, ok as long as there was no major episode, and ready for a glass of wine. Weird, I know. You are not alone, as you can tell from the many responses. I just don't know how to get over the anger I have about POTS.

Good for you, notgivin up!!! I have had a nice remission for a few months last year...I think - it's so hard to tell w/ POTS. The only thing that struck me about the milk is that I am testing whether Vitamin D helps me or not. Last year during my relative 'remission', I was taking Vit D and walking a lot (need to resume the walking!!) I am trying to do these 2 things again to see if there is anything to my theory of what helps me. May mean nothing, but we'll see!!

Toddm - Haven't looked into mito - maybe I need to. Dozzy - Thanks, it does feel kinda like this, and tends to happen almost always at this time of day (can happen if I go to bed to late, like suddenly can barely make it up stairs to bed - I always think, how weird that between 10-2 AM and PM I am prone to these...must be a clue).....during the 10am-2pm time, it does feel like hypoglycemia in some ways, but I do not get shaky and starving (I have had 2 hypo episodes in past during which it was very clear what was happening and I ate/drank as fast as I could, which solved my symptoms pretty quickly). W/ this symptom though, even though it feels similar, it does not feel the same and I tend to get a nervous/hungry/easily full/super-anxious/BM urgency feeling pretty regularly at this time of day - I wonder if I could fix most of this by a better eating schedule - like 2 small lunches at 10aqm and 2pm. Still, the weakness 'episodes' (less frequent than my daily unpleasant time) have ONLY happened since I've had POTS and seem to be the trademark for me - they are worse and involve other symptoms if brought on by exertion. Does anyone else have certain times of day that they usually feel much worse/nervous/urgent/strange/weak...then the rest of the day, you are ok?????? It is making me depressed for much of my day....

Lexapro almost killed me. Dont mean to scare you, but be careful - if it doesn't feel right, trust your body. I couldn't eat or sleep for days......the worst I've ever felt. But, everyone reacts differently to meds - esp w/ POTS. I would recommend Klonopin (as needed, not all the time) over Lexapro any day. Hope that helps - sorry about what's going on with your husband!!

All I can offer is I have had a similar (and short-lived) symptom a couple of times, both having been sitting still for a period of time preceding it. Sudden feeling of heart doing something WRONG, rising feeling in chest, into neck, weird sensation in ears/partial hearing loss, felt like I was about to lose vision and black out (which I have never done), got up and walked around to jolt my heartrate back to normal. It worked, but I had the phone in my hand about to dial 911.

Thanks so much for all the replies!! It does help to know that I am not alone in this symptom. It is frustrating that I cannot pin down the cause - and sometimes even the trigger. It scares me a lot, and I am trying to find a way to deal with the emotions/anxiety/depression that come after the episode. It makes me scared of next time this happens - and sometimes anxious and even embarassed. I'm sure I am not alone in these feelings either. Thanks again, everyone.

OK, I am generally ok (I use that term loosely as I do avoid certain activities, temps, etc).Yesterday, (and actually a few other Sundays at same time of day ???) I got the awful unexplained weak episode. I'll describe it in hopes that some people on this board may be able to relate. It is usually mid-day for me, but can be at bedtime. It feels like I am just exhasuted physically, though I can still walk around and do things - which actually helps me if I don't go too fast. It just feels so bad - I feel so weak, just as if it is not going to get better and I am going to die (I know, this sounds like panic, but it isn't). It is so odd,I am quiet during these, so my family can always tell know that I'm not feeling well - my husband has learned a lot and is so nice and told me I did not have to go to the fam function (but I did since we were seeing out-of-town relatives), and the kids were concerned. My mind just is kinda out there, and also really focused on trying to pinpoint exactly what is wrong. I know it doesn't sound that bad, but it is. It is so frustrating!!!!!!!! I want an explanation!!!!!!!!!!!!! Why do I feel very weak and weird (all over - I can't pin-point any body part or area that is bothering me) for no reason???? It lasted for maybe 30 mins and then I took .25 Klonopin while we were on the way to the fam thing. Within 45 mins or so, I felt fine. it was SO depressing during the episode, I just wanted to die - really, I know that sounds crazy, but that is how bad it feels, and I think if I understood what was going on, it would help. If anyone has an idea, pls offer it - I really don't think it's as simple as hydration, etc as I have been less hydrated, more active, more hot, etc, and this did not happen. I just wish I understood the mechanism. The only thing that could be contributing is that it is right before my period, so Im sure hormones are contributing - but that does not explain the real faulty mechanism. PLEASE HELP!!!!

Wow, Rama. You understand all of this so well. I think you will firgure it all out just reading the studies before any of the Drs do! Thanks for your posts - the insight gived me hope that there will be a real cure/effective treatment someday soon!

Klonopin works for me. I take 1/2 of the .5 pill....occasionally, because I don't want to deal w/ tolerance/addiction/withdrawal. I second what Maxine said about somehow breaking a cycle. This seems true for sleep and symptoms - if in a bad bout of sleep (not often for me), I'll take one one night and it will be fixed for a long period of time. Also, seems to work this way for symptoms.....helps at the time, and seems to break the cycle so the ANS relaxes for way longer than 1/2 life of med - like days??? Don't understand this, but I like it. Never tried any other benzo. It takes me probably over a year to finish a (30?) pill Rx of .5

Yes, me too please! No dizziness PVCs - LOTS sometimes, sometimes none - goes in cycles for weeks/months at a time Major exercise intolerance - if I do too much, will feel weak/hot/awful/dying for 1-2 hrs bending over too much causes diff kind of 'episode' - weird chest pressure/discomofort and urgent/intense feeling would characterize my POTS more as intense terrifying attacks.... also, tachycardia upon going up a flight of stairs or similar acitivty - does not settle down for a while BP tends to go up (tho not dangerously) upon standing/activity not usually any problems w/ standing BMI low - now 5'1" 105#.....at beg of POTS: 98# or less heat intolerance - seems much better - showering 'ok' - last summer fine, previous summer **** need to move around after walking/climbing stairs, etc - can't stop too fast menstrual migraines - controlled easily w/ pain med if taken soon enough Klonopin helps - I think I can do more w/o symptoms sleep usually fine, break any bad sleep cycle w/ one night of .25 Klonopin and it's fixed gastro-bowel usually fine...but can have urgency both types at beginning of episode don't pee too often at all normal fertility never Dx w/ anything else normal catecholamines onset>?? I think came on around onset of PSVT - no apparent viruses or trauma, but very mild. Real onset about 9 months after 4th child - during cutdown of breastfeeding - just got worse & worse as I cut down more. Then crash when I quit altogether. Episodes were terrifying, heat intolerance was awful. Basically have a tripwire where if I go too far/get too hot, I'm done for a period of time....pure **** and terror. Feeling pretty good recently - had a nice remission last spring/summer I think Vit D helps me - so far, this has proven true. Walking often - like a few blocks - slowly - w/ kids - seems to help too.

Reen, That so rings true for me - during these heat episodes - or any bad pots episode for that matter - it's like i am just out of it - terrified but out of it. I don't talk much - not typical for me at all. I always thought it was because I am so scared it is all I can think about....but maybe there's more to it.

Sue, Don't know if our symptoms are really the same or not - but I have had that extreme fear of the heat - after my first summer w/ heat intolerance (last year, had a nice remission period and I was ok w/ the heat - but I do live in Chicago, where 95 is considered pretty hot and is not that common). I almost think calling it heat 'intolerance' is really not strong enough - the episodes I had were extreme - tho I never went to ER or even took my temp - why didn't I think of that then???!!! Anyway, once I got too hot, I would actually stay that way - felt like I was dying of heat stroke - for a good hour or so - some of the episodes I could not escape the situation - ie very hot weather on vacation and hot car - the AC seemed to cool everyone else down, but not me - I was spraying (soaking!) myself w/ a mister water bottle and AC on high/cold blowing all over me - it did nothing, I really thought I was going to die there in the car on the backroads of KY. I felt like I might get a tiny bit of relief from climbing into a meat freezer. It was pure ****. So, I was terrified of driving around w/ my 4 kids in the car and having this happen during summer - it did happen (1st time!) on way to communion practice - incl other peoples' kids! - and I ended up in front row...dying, hot....running to bathroom while someone held my baby - then finally just had to leave - drove home w/ baby.....in a very hot panic - and sat in front of AC until it subsided (kids carpooled w/ someone else). "Not fun' doesn't even begin to describe it. I SO wish I had taken my temp....don't remember if I was sweating or not, the heat came on me so fast and it was as if the thermostat was stuck inside. Last year I was ok, and also noticed that I sweated just fine in hot weather - thank God for that improvement...we shall see how it goes this year. Would anyone else describe their 'heat intolerance' like this?

I don't have this particular symptom - but do have something similar sometimes - chest tightness or pain. Just want to say you are not alone w/ the scary symptoms - and it is very hard not too get anxious/panicky when they happen, which of course just makes it worse!! Yuk!

Thanks, txpots. Any info about these pots types is very appreciated!!!

Thanks, rama. I asked this in a previous thread.....symptom markers for types of POTS. Based on your descrip, I would tend to think I am normal-flow. I do not notice pooling, not hot to touch...also have normal catecholamines. I have a feeling I have stomach/trunk pooling - just a hunch based on how I feel, etc. - but, I am not 'normal' supine - my hr is usually hihg - nor does lying down resolve my episodes. I have more of a tripwire.....if I cross the line, I'm in for it for a good hour or more. It really seems like there is some involvement of the main control of nervous system for me (hypothalamus, etc) that gets stuck in the wrong gear - also unable to change gears w/o me manually doing it (by walking around after stairs, etc.....or marching in place while standing, etc). I feel I have to keep my blood moving actually. Walking around helps my migraines (tho they are menstrually caused), my episodes, my avoidance of episodes, etc. If I stop moving (esp too fast), things do not feel right. What does this mean?? - am I manually avoiding the pooling by using muscle pumps at a low level?

M bp generally goes up too. When I take it sitting it is usually normal, like 110/75, maybe a bit lower - have seen it 90/60 maybe at the lowest. My TTT looked like this (condensed version)...and I was very nervous the whole time: Supine: 108/78 hr70-80 Tilted: 133/77 hr90s (2mins) 142/86 hr80s-90s (8mins) 114/70 hr90s-110(13mins) 127/69 hr100s (16mins)... 115/70 hr 100-110 (20mins)then, Iso..... 135/65 hr100-130 (22mins) 110/63 hr 140s (26mins) 114/62 hr140s-150s (30mins) These are a sample - in order of the 30 readings they took each minute of the 30 minutes.Yes, I know they did not records super-exact hrs, but my hr basically kept going up (tho it bounced around), but my bp basically bounced back & forth between normal & a little high. You can tell the last 3 readings I wrote were part of the 10mins after the Iso (sorry, I can't spell it), after which I felt the much faster hr and very pounding heartbeats - not fun. BUT, I did not feel ill and never came close to passing out. Dizziness is not a symptoms for me, nor is passing out. When I have had episodes, and have taken my bp/hr, they are both high - I remember bp readings like 140/95....and they seem to stay that way during the episode, so I can't sleep etc. Like they are stuck. However, my catecholamine test was normal....and I don't have problems standing (except for too long maybe), just w/ exertion and heat. Wish I understood all these mechanisms better.

I wish I knew the answer. They used iso on me - even tho I qualified for POTS before that injection. It just made my heart beat faster & more forcefully.....not fun.

Hi hopefullady, I get floaters occasionally.....they don't seem related to my migraines at all though. I have said many times that I can't be in Walmart too long bc of the lighting....feel odd, headachy, just off somehow maybe slightly dizzy.....very light sensitive - cannot get by w/o sunglasses.

Well, that is very depressing. I can't find any info (maybe there isn't any) out of Mayo or Dr Grubb, etc. on this subject - would like to know if they have any data on this....anyone? And it's not clear to me exactly what the preceding incident is either. "During" OR "after" pregnancy? Childbirth? Those are all different things. Unfortunately, I also had PSVT, and an ablation that preceded mine, so I have a hard time figuring out exactly what preceded the POTS. I KNOW that the real, awful, obvious symptoms hit me (hard, since I felt great and normal during the first 9 months or so of nursing) around 9 months postpartum, when the nursing was dropping off. So, whatever that hormone shift is was the immediate preceding factor. Can't figure out if I had some level of/was susceptible prior to that - during pregnancy and around time of SVTs/ablation, as I had a few complaints of PVCs and various types of chest pain then, but none of the other super-nasty terrifying symptoms til the 9mos or so postpartum.

also, where did you read about the prognosis for women who developed POTS after childbirth/pregnancy? I have never been able to find any prognosis info for this type of onset.....doesn't seem like there are THAT many of us compared to some other types of onset.

Hi Hopefullady, I am not certain about the cause of my POTS; I have PSVT, an ablation, then my 4th pregnancy in that order over a few years. Then, I was Dx w/ POTS after I weaned the baby when he was about 1 year - that was a really awful time symptom-wise - kept having unexplained sudden terrifying symptoms. So, I think maybe the SVT heralded it or the ablation may have brought it on, but the hormone changes during weaning certainly brought it ON. Sorry I can't offer more insight than that, but you are not alone. I don't take any regular meds....there may be some that help me, just haven't found them and am scared of meds, so not willing to try much unless I thought it would really help. I'd be thrilled to find something that made a big difference. My symptoms wax & wane, have had a nice remission period for many months....not sure why. I do take Klonopin occassionally as needed - probably maybe 1-2x per month - and only .25mg. Also, take Fiorinal (a barbituate) for migraines 1x per month - that's all in my sig line.

Hi Erik, Some of those symptoms you describe, I have felt...like the shakiness, weakness, need to pee, hot, etc. BUT I do not get them from standing....and sitting or lying down does not solve them. I get those from too much aerobic activity (threshold changes, but is generally pretty low) usually. My episodes cannot be resolved by anything I do - tho I think Klonopin helps and walking around. So, I feel a little different from most POTS patients since lying down does not resolve my issues...in fact, lying down is usually less tolerable, since I can feel the racing/pounding hr more and I feel the need to move around despite the weakness....any thoughts?

Can anyone give any symptom markers for low-flow vs. high-flow or normal-flow POTS? I really don't think I understand all the mechanisms very well. Wondering because dizziness, fainting and brain fog are not symptoms for me. Walking is a help to my symptoms. I also think Vit D is a help for me, but still testing that out. I do not tolerate strenous activity or much aerobic activity, bending over too much, or heat. If I do those things (and occasionally unprovoked), I will end up with a nasty 'episode' like racing/pounding hr, weakness, hot, or various other nasty things...for various periods of time....up to 2 hrs or so max. Some of these episodes have been very terrifying, like feeling on the verge of death for 1+ hrs; some have been tolerable but weird....like last night's thing where I get a knot below (not under) my ribcage, in the middle, maybe stomach? but I don't think so, maybe diaphragm....that will not go away - even had it this morn, feel like I want to push on that area - but it was actually painful when I did this morn, now it is gone....sorry for rambling, I hate odd symptoms that I cannot understand/explain.

Trainboysmomrocks, Can you tell us more about what you are taking? Sorry, I haven't looked at your member profile - how old are you, etc?