Sitting Too Long Causes Major Flare Up.

[Findinghope]

Does anyone else have this issue? If I sit upright at my desk more than a couple of hours when I get up my heart starts racing I get PVC's, feel cold, and feel awful shaky dizzy. After about 30-45 minutes of moving around I feel better.

I know I know I should get up and move around more during the day but my job requires that I sit for long periods of time. I guess I just going to have to force myself to move around more....

I realize others cant even get out of bed so I am thankful to be able to move around and lead a fairly "normal" life but I hate it when it happens. It scares me. I have had multiple tests done since my diagnoses in 2009 but it still scares me..........

Anyone else experience similar issues?

End of rant I guess thanks for listening. I don't post much but I do love to read about others and it is nice to know I am not alone.

[lejones1]

I think that's probably pretty normal? When I was much sicker but still stubbornly trying to work, I got to a point where sitting up for a few hours could leave me bedridden for a few days. I decided it was time to quit when I spent more time on the floor of my office than in my chair.

Now I'm much better and working again, but sitting up for a while still makes me symptomatic, although not how you're describing. I get bad headaches from sitting up too long. I think of them as POTS headaches because they're different than anything I'd felt before - they're a bit like tension headaches but I think maybe from lack of blood flow to the brain or something. When I first started back to work I did 3 hours a day and had headaches every day. They slowly improved, I increased hours, etc and now I'm up to 6 a day. So maybe it is possible to train ourselves to be upright more?

Have you tried lots of salt and water at work? Compression stockings? Propping your legs up? Or probably the best thing I've heard...I have multiple computer screens so it's not an option, but I know a guy with POTS whose company bought him a laptop so he can work laying on the floor if he needs to. Probably worth a shot if it would work for you!

[gjensen]

Early on before I understood what was going on, I had very similar issues. Then I would get relief by walking it off. I would get symptomatic driving, would pull over, walk it off and keep going.

Now it works like the above poster for me, but more of an extreme. All I have to do is sit up, and I get awful head symptoms. Sitting up (and especially leaning forward), is as bad or worse sometimes, than standing up. My cheeks get numb feeling first. Then progresses to ear ringing, and eventually migraines that can last for days.

I will watch for responses, because this is what limits me the most. I seam to be able to manage and tolerate all of my other POTS symptoms except this. And so not to discourage, I am not being "treated" yet. So I am hopeful and expect to be able to make improvements in this department.

[srb]

Yes! This is one of the things that I have struggled with frequently. So interesting to hear of others' experiences and solutions. Some days I am sitting a lot and it took me a while to recognize that I was much more symptomatic on those days. I also have struggled with driving and was going to ask if others had experienced that.

The shakiness is so difficult because I'm afraid it comes across as nervousness or anxiety to others and it is hard to explain.

[Aeris5000]

Thank you, everyone, for the very insightful info. I wish I had seen this thread a year ago, as my worst POTS symptom is daily headaches. I also work a desk job where I sit pretty much all day, and even though I feel strange head sensations every waking moment, I start getting worse around lunch hour, 3-4 hours after I've been working. I work with two PC monitors and staring at the tiny font for that long makes me feel worse. But if I get up and walk around just a little bit, the blood seems to work it's way to my brain a little better.

I have a question for anyone who gets these "lack of blood/oxygen" kind of headaches. I'm still trying to determine if my headaches aren't anxiety-based, moreso than blood-flow related. What happens to you if you stay seated and don't try any counter-measures? For me, I almost always have a lot of pain at the base of my head that travels down my neck, which gets worse. I also have a lot of pain in my forehead and my eyes water and feel like they're going to pop out from the pressure. I start getting really agitated/anxious and feel like I could cry at any second. At the same time, I get super tired and feel like I could fall asleep at any second. I might get a scary adrenaline rush where I feel my heart race and I feel like I'm going to faint, but I have never fainted. I actually believe this is the heart trying to get blood to my brain quickly before something worse happens. I can usually stop an adrenaline rush from happening by just changing my posture quickly or focusing away from my work for a few moments. Despite feeling like absolute crap when this happens, my HR will only be in the 60's-70's during these really awful spells. They'll last about 30 min. or so, then I'll go back to just my standard, dull headache.

As for counter-measures, drinking water doesn't seem to do anything, neither does crossing my legs. If I get to lay down, all that head pressure shifts to the back of my skull/neck and it is very uncomfortable. Even at night, I can rarely fall asleep on my back due to the pain, which goes away if I lay on my side. But I usually roll onto my back during the night and I'm fine then.

Finding Hope, I hope you can find something that helps. It makes me wonder the physiology of our illness, and why our symptoms are so different when we're doing the same activity - sitting, in this case.

[gjensen]

I wonder if Florinef ha helped anyone with these symptoms.

[blueskies]

When sitting up for anything longer for a few minutes I have to put my feet up or I will feel very potsy: dizzy, sick, can't concentrate, migrainous. I was like this for decades -- long before I was diagnosed with pots.

I can't stay on the computer for long no matter how I'm sitting, lying. Looking at the screen makes me feel potsy as well.

blue

[galatea]

Sitting upright in a chair for long is almost like standing for me. I would recommend a foot stool so your feet are higher (this helps so much!) and constantly changing position, especially sitting with your feet up on the seat.

[Findinghope]

Thanks everyone makes me feel better to know that I am not alone with this...... The place I feel the best is in my bed sitting up with my legs out.....but staying there all day makes me feel like a complete bum. But that is when I feel best :-) I have been feeling better which I am thankful for but not quite as well as I want to but we will keep pushing on! Hugs to everyone again it is so nice to know that I am not alone.

[MomWithPots]

I am the same way! The cold makes it worse...I'm taking a 3 hr night class at.college amd they keep that building so cold! I have issue controlling my body temp as it is. I get really shaky and anxious before its over. Also feel faint. I guess its normal though, our normal that is Just stay active...and warm.

wish u the best!