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Do You Feel Ok One Minute And Then Horrible The Next?


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I'm like that. I don't like making plans because I never know how I'll feel up to the minute. I have to time everything every day. Ex, my hubby usually does the grocery shopping (after I write a very detailed list) but if I'm feeling 'eh', I'll take advantage of that and go. If that makes sense.

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Definitely yes. It makes me mad because people don't believe your sick when one minute your fine and the next minute your too sick to get off the couch.

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Oh yeah - one minute feel decent, next minute feel rotten - is not always associated with any particular activity - I can be sitting at my desk working on the computer and end up slumped over for no apparent "reason". The only control I have is to avoid known triggers: walking long distances, standing up for too long, strenuous activity, lifting up my arms, etc....

Don't feel alone - this seems to be a characteristic of dysautonomia - I, like you, wish people had more compassion and understanding that we don't have control of this situation. - it is discouraging when we are dismissed as lazy, crazy, and "histrionic".... :o

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Oh ya a big yes over here too. My roommate gets so mad at me and she has been with me durring this whole process. People who don't have it just don't understand. So glad I found this group.

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Yes, I can definitely relate. I have gone out to dinner a few times over the past year (since onset of Pots), but I went only because I felt like I wanted to do something remotely "normal" for my husband and son. I would go and feel miserable the whole time. Most times I just stayed home while they went. Anyway, recently, my condition has improved enough that I actually felt like going out for dinner. I was soo excited about that fact and shared that news with my husband. I was all smiles when we got in the car and three minutes later I felt horrible. He was looking at my like "what???". :huh: Oh well, at least I had the feeling even if it was briefly.

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Same here. I can feel perfectly normal one minute, then the very next one I'm a wreck with no apparent trigger. It happened while watching TV, having a relaxing conversation with a friend ( I know I gave her a good scare), while shopping, etc. I have days when I spend the whole day up and running - cleaning, driving, shopping, etc and have no symptoms at all and others when I can get a nasty episode out of the blue while doing something totally non-strenuous. The worst episodes for me though are those that wake me up in the middle of the night (heart racing, chest pain, shakiness, shortness of breath, headache, muscle aches, high blood pressure etc) - I'm still not convinced those are consistent with POTS, but what do I know.

Alex

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I see this alot of the time in my son. I know that lots of things affect POTS but I really wonder about hormones and emotions. When you already have POTS, you really don't need anything else on top of it. Some days he wakes up fine and other days he wakes up shaking and unable to walk. POTS is a rollar coaster ride at our house.

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I was just saying this today to my husband! I was going to ask y'all how you deal with it because it's one of the hardest parts to deal with. This morning I woke up, felt good. Figured it was the new meds I was just put on. Waited a few hours, still felt great and decided to make a trip out to pick out granite with my husband. Did kinda okay there but started to feel a bit dizzy. That should have been my sign. We decided to go to another store. By the time I got there, I knew it was going to get bad so we quickly got back in the car and headed home (the guilt of this all kills me by the way). By the time I got home, full on attack. Dizzy, chest pain, racing heart, just feeling AWFUL. I was feeling SO great this morning too and it literally just turned on like a switch and went from feeling great to absolutely horrible in minutes. How do y'all deal with it?? I am fairly new to this and still struggling to come to terms with it all. I keep thinking that I'll just 'get over it' since mine started so suddenly out of the blue one day.

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My condition seems to vary hour-by-hour. I recently started taking florinef. One week later I felt better with no light headed spells (although replaced by headache/PVCs). Unfortunately the normal symptoms appeared the following day. It has been difficult to identify triggers for my symptoms. In any case, I have suspended most of my favorite activities (hiking, traveling, running, biking, evening cocktails, etc.) and become more accustomed to doing more reading and tv watching. I still make frequent gym visits if feeling acceptable but stick primarily to lifting weights, recumbent bike and elliptical (although I may feel a bit wobbly at times). Sleep has also been erratic and it is miserable when I obtain almost no sleep and have a busy day of work ahead. My issues started mid-August so I am still trying to figure out this condition.

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That's the way it is for me. I have found some patterns in my symptoms. For example, I tend to feel better in the early evening. But everything seems to be a trigger and my symptoms fluctuate from one day to the next or one minute to the next. Making plans just ends in frustration and self pity, so I do everything I can to avoid it.

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Yes, Yes, Yes! I am a very goal oriented person and this is one of my biggest challenges. Emotionally, it's hard to change gears when it becomes apparent that things will not work out as planned. More importantly, it's downright dangerous sometimes . . . like driving somewhere and not being able to drive back home safely (been there, done that, ain't gonna do that no more -- it's too scary!). On the bright side, POTS is giving me a chance to grow in character . . . having a pity-party is easy, but graciously accepting circumstances takes more strength. Trust me, I'm not standing on a pedestal of perfection. I'm a work in progress. But when I thank God for the things (however insignificant) I was able to accomplish, I have a brighter day. The unpredictability of our lives can be a frustration . . . or an adventure!

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Oh yeah! Been there, done that, do that.... It's been 3 years of learning to deal with it and being a "determined" type (some in my family might say- "stubborn"), it hasn't been an easy process. :rolleyes: LOL Have had to call for a "rescue" several times when I've thought I could go do something and then had to get my husband or one of my kids to come pick me up as I wasn't safe (think "capable of being vertical") to drive home. More frequently, have tried to do too much and ended up setting myself back a lot.

Currently, I am not able to work and while I appear "functional" to people when they see me, they don't realize how very limited my life is when they DON'T see me. I'm much less active than I used to be. I still go out and do things with friends and family, but I have to pace myself as far as how many commitments I make and how much time I give myself to recover between. If you had told me 3 years ago what my life would look like now, I would never have believed it, nor would I probably have accepted it. BUT, after so many ERRORS in the trial and error process, I'm finally learning that my body just has it's own way of being in the world now and it's not like it used to be.

One of the things that I find endlessly frustrating is that some days it seems like I can "push" thru things a little bit and get away with it, and some days that same attempt to push thru will just lay me out flat. The other things that drives me crazy is that I can go to bed feeling fine and then wake up feeling like I got hit by a Mack truck and not be able to function for weeks. I'm with Tuesday...it's the unpredictability that gets to you. To some degree, if you had it all the time, it might be easier to adjust.

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Yes, I can go from feeling okay to feeling really ill in a moment. It's a bit like having the flu virus. One minute you are fine, nest minute you realize you are getting really sick. I do believe that stressful situations have a bit of an impact on this feeling but is, in no way, the only reason. And pots is a major part of the stress, anyway.

I can't really commit to doing anything. Ten years ago I was an extremely dependable person. Now I just can't be relied upon to be there, to turn up, to have lunch or to help out someone, to work etc. Doctor's appointments are often an 'extreme challenge.' ****, people on that tv show 'survivor' have nothing on me at times, LOL. I have developed the habit of hardly ever committing to doing anything. I don't meet up with people for social interaction anymore. Part of it has to do with a problem I have of dissapointing people and not liking to draw attention to myself or my illness.

I find stress/adrenalin will often get me through a committment but I pay for it afterwards.

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