Angela Posted August 30, 2012 Report Share Posted August 30, 2012 I was wondering how many people with hyperpots still work, if so what type of work? Seems like most don't. Also, how many can still drive? Quote Link to comment Share on other sites More sharing options...
Darlene Posted August 30, 2012 Report Share Posted August 30, 2012 not me. symptoms to unpredictable. do drive when i am feeling ok. mostly have my daughter drive. Quote Link to comment Share on other sites More sharing options...
hippychic258 Posted August 30, 2012 Report Share Posted August 30, 2012 No not since January went from standing 10 hour days at a job that I loved so much to now I can't stand 30 seconds, so driving is out for me Quote Link to comment Share on other sites More sharing options...
peregrine Posted August 30, 2012 Report Share Posted August 30, 2012 Probably hyperPOTS (no bloodwork done to confirm), but might be still useful. I don't drive - haven't been able to for over a year now due to spaciness. We'll see if the Ritalin (methylphenidate) I started today helps with that. I do work, but I'm a research fellow (grad student), so my work is incredibly flexible both in terms of hours and when/where I get things done, so it's not necessarily a good example :^) Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted August 31, 2012 Report Share Posted August 31, 2012 I amback to work and have been driving all along. POTS diagnosis is Hyper POTS. Never had any fainting episode but was in terrible shape off Propranolol, now trying to taper it and exercise. Quote Link to comment Share on other sites More sharing options...
Zap Posted August 31, 2012 Report Share Posted August 31, 2012 I am still able to drive when I feel OK. I've been off work since July of '11, not that I'm getting any help or support. I'm most likely hyper-type, but haven't been able to get anyone to test me for catacholamines yet. I've tried a number of meds, but nothing has lasting help so far. I've tried exercise, but it doesn't have enough improvement to make me stable either. Sleeping is totally off-whack, insomnia and usually only fall asleep super late. If I could keep the migraines at bay and have a normal sleep-wake cycle I might be able to work, but I can't get adequate treatment thus far. Quote Link to comment Share on other sites More sharing options...
Batik Posted August 31, 2012 Report Share Posted August 31, 2012 There's a difference between "most people with POTS can't work" and "most people on this POTS forum can't work". The ones with POTS who are able to control it due to treatment, and to work as a result of this, are far less likely to be on this forum. So there's a strong negative bias which should be borne in mind.For the record, I can't work, but then I don't have a diagnosis of POTS yet, and have no idea how I'll fare if and when I receive treatment. Quote Link to comment Share on other sites More sharing options...
Angela Posted August 31, 2012 Author Report Share Posted August 31, 2012 yeah, i realized when I posted that there could be a bias because often when you feel better you forget about "support groups" such as this forum however at the same time I am sure there are plenty of people who are too sick to even get on a forum or not savvy enough to know about this forum and the internet alone so I take that into consideration. It was just a question. I presently do not drive unless it is to the corner store but I do work - a desk job so I am sitting most often but stressful....so not sure for how long. cannot tolerate proponol and do not want to try any other alpha beta blockers presently. Quote Link to comment Share on other sites More sharing options...
Angela Posted August 31, 2012 Author Report Share Posted August 31, 2012 Also Batik, from my readings and what I have been told hyperpots is much harder to treat than the other type of pots which is kind of why I directed the question to that subgroup but appreciate any answers from all Potsies. In general any Pots/dysautonomia *****. Why do you suspect mastocytosis? How come you don't have a Dx yet for the pots? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 31, 2012 Report Share Posted August 31, 2012 I don't know if I have hyper POTS. I was only diagnosed with POTS and my specialist has discouraged further testing or diagnosis, mainly b/c my symptoms are mostly tolerable. I do get bp swings and high bp when I have a flare up. Anyway, after not being able to work for about a year I have been able to work for the last 8 years with flare ups once in awhile that have kept me at home. Quote Link to comment Share on other sites More sharing options...
westernmass Posted August 31, 2012 Report Share Posted August 31, 2012 I also don't know what kind of pots I have. Just pots dx so far. I am able to work, but only because my work has been wonderful to me. I do about 50% of what I was able to before Quote Link to comment Share on other sites More sharing options...
Angela Posted August 31, 2012 Author Report Share Posted August 31, 2012 Awe, glad your work is so cool. My environment is a little diff.... my boss loved me before I got sick, and now its different, no one seems to understand that i can't function the same and cannot tolerate the stress well. Quote Link to comment Share on other sites More sharing options...
yogini Posted August 31, 2012 Report Share Posted August 31, 2012 I work and have worked almost throughout having POTS. I did make a choice to take a different kind of job that would be easier on my POTS. I think most of the people who work are probably too busy to post. There are a lot of different factors that play into whether someone works - some people here were already stay at home moms (which of course is work too, but different), others have a spouse or parents to support themk and some have to push themselves because they would literally have no roof over their head. I am not sure that the type of POTS (hyper or non hyper) makes much of a difference in the ablity to work. Quote Link to comment Share on other sites More sharing options...
Angela Posted August 31, 2012 Author Report Share Posted August 31, 2012 Yogini or anyone else...I used to do yoga before I got sick...want to slowly get back into it or pilates as you can do much of the exercises on the floor mat. Any excercise dvd's that you recommend? They would have to be mostly gentle and not standing up to start with. Quote Link to comment Share on other sites More sharing options...
yogini Posted August 31, 2012 Report Share Posted August 31, 2012 The ones I used were AM/PM Stretch for health, Pilates Complete for Everyone and Yoga Shakti. The stretching one is the best if you are just starting back into exercise. Quote Link to comment Share on other sites More sharing options...
Angela Posted August 31, 2012 Author Report Share Posted August 31, 2012 Thanks Quote Link to comment Share on other sites More sharing options...
Loulou Posted August 31, 2012 Report Share Posted August 31, 2012 I'm still sure what type of POTS I have but I haven't been able to work for just over two years now, of course I had been diagnosed wrong until last June.Loulou Quote Link to comment Share on other sites More sharing options...
firewatcher Posted September 1, 2012 Report Share Posted September 1, 2012 Yes, I can still work. I have hyper-POTS, and have always had it (or was so young at onset that I don't remember.) I had been able to and did work full-time for many years doing a primarily seated job. I had a "POTS-crash" back in '07 and have been able to slowly work back up to a mostly standing part-time job in addition to raising two kids ( I was self-employed for many years and have taken time out to help a friend's business.) Much of what you can do depends on how you define "work." A 60 hour a week job hanging drywall or a 35 hour a week desk job. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted September 1, 2012 Report Share Posted September 1, 2012 I don't know what type of POTs I have mostly because there are no Dr's who specialize in my area of getting any more of an exact diagnosis. I have crappy POTs - that's all I know. I couldn't work from Jan to March....but once I returned part time for the first month then full time I my symptoms did improve. I returned very symptomatic and seemed to re-train my ANS to tolerate standing, position changes, talking and walking and then (much later) light lifting. I'm in out-patient orthopedics ....physical therapist....so I have the ability to sit and stand. I made it work, directing pts from sitting when I could and stood when I could. My boss was supportive in making sure I sat if I looked like I was going to faint. And I would also like to thank my husband for dressing me in the morning as I couldn't have gotten to work without any clothes on. Mornings were always the worst for me. I am much better from having made a push to return to the type of job I have. I'm sure it wouldn't work for everyone. Good luck all Quote Link to comment Share on other sites More sharing options...
Angela Posted September 1, 2012 Author Report Share Posted September 1, 2012 that's cool....i wish my bf would dress me. I just put bobby pins in my hair anymore so you can't tell i havn't washed it and never bathe in the a.m. and throw on whatever I can find as far as clothes go....that's funny that people don't think i look like I feel (at work). I guess I don't stink at least, I know my boss, who used to be one of my best friends before I got sick would certtainly say something! Quote Link to comment Share on other sites More sharing options...
yogini Posted September 2, 2012 Report Share Posted September 2, 2012 For yrs I didn't bathe in the am. Try dry shampoo. It makes your hair fuller and smell fresh. You can go 2-3 days without washing Quote Link to comment Share on other sites More sharing options...
Angela Posted September 2, 2012 Author Report Share Posted September 2, 2012 that's cool... what brand? currently i go 4 days without washing my hair. Quote Link to comment Share on other sites More sharing options...
Angela Posted September 2, 2012 Author Report Share Posted September 2, 2012 hmmm...that brings another question to my head but I will start a new topic so as not to confuse! Quote Link to comment Share on other sites More sharing options...
yogini Posted September 2, 2012 Report Share Posted September 2, 2012 My favorite is Klorane, but it's expensive. I switch between that and the one you get in the drugstore Psst, I think. It works well too. The dry shampoo makes a big difference. Quote Link to comment Share on other sites More sharing options...
targs66 Posted September 2, 2012 Report Share Posted September 2, 2012 I work very part-time at the office where my husband has a job - it's a small specialized construction firm. I "help out" in the accounts department, usually 1-2 afternoons a week. I feel SO lucky that they let me come in at 1.00pm. Mornings are deadly to me; plus, I have awful insomnia and finally manage to get some serious sleep between 6 am and 9 am. I'm glad I can do at least that much, but am so discouraged that after my little 4 or 5 hour "day" at work, I am utterly demolished. I feel like I can barely remain upright after a work afternoon, and am very tired the following day. Very discouraging, given I used to work a demanding full-time (and then some) job. Quote Link to comment Share on other sites More sharing options...
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