Jump to content

Do You Know Anyone With Pots Who Seems Relatively Unaffected?


dizzyblonde
 Share

Recommended Posts

Hi everyone, I've been trying to arrange a schedule with my work that I can manage so that I can keep my job, and so I've been talking a lot with the human resources department. I sent my tilt table test results to my HR rep just to document my diagnosis, and then when I went to meet with her the first thing she said was "Oh yeah, I have POTS too!" in a really happy voice! She also told me that "fortunately it doesn't affect [her] work" like it's affected mine.

I don't mean to minimize the trouble anyone has who has gone through having this, but from what she said, her experience with POTS involved passing out once while shopping. While I'm sure that's a scary experience, it's not the same as feeling affected every single day--being dizzy constantly, exhausted, having digestion problems, etc. that keep you from going about your life every single day. I didn't want to get into a contest with her about who had the worse symptoms, but I tried to get the point across that my experience was different than that. She also said that it's a good to have it diagnosed because it's very treatable. So far that hasn't been the case for me either.

Maybe I'm just being overly sensitive, but I felt like she was basically saying that she could cope with the disease but I couldn't. (Also, the result of the meeting was that they can't really make any accomodations for me.) Even though I know what I'm going through has really changed what I'm physically capable of doing, this made me feel like I'm just weak or a baby for letting this disease interfere with my life.

Link to comment
Share on other sites

I recently met someone who has episodic POTS/OH. For me however, I experience some degree of symptoms 24/7. I've also tried nearly every medication available and had little improvement. Hopefully this person will realize that there are degrees of severity in EVERY illness. I've attended a lot of carcinoid syndrome support meetings with my mom and have met quite a few others who share her diagnosis. But some people work, some have chronic pain, some pass out, etc...

My only advice would be that if she doesn't display some compassion for your symptoms even after you've explained yourself, try to just avoid her. Unfortunately, getting frustrated will only sap the precious energy you have left.

I'm so sorry to hear that your work was unable to accommodate your symptoms further. That IS frustrating!

Link to comment
Share on other sites

I'm 51. All of my adult life, up until about age 40, my normal blood pressure was always 90/60. I felt fantastic and could do whatever I wanted all day long. I remember going to doctors' appts. for occasional illnesses, and my resting heart rate was always around 100. So, I can only imagine what it must have been standing up! When I was pregnant and in nursing school, I was the "patient" lying down and they took my blood pressure. It was 70/50 and we all laughed.

My point is, I have had the numbers my whole life, but felt great up until age 40. Some people are symptomatic and some aren't. I apparently had awful vital signs but felt great and it never affected me. That is, until POTS hit 6 years ago.

Now, even if my vitals are pretty much normal during the day, I still am 100% symptomatic day in and day out. If I even began to go as low as I used to be, I would be lying down feeling deathly.

So, did I have POTS my whole adult life? Or, did I just get POTS 6 years ago??

I would like to add that I consider getting POTS 6 years ago as my starting point, because if I could function, I wouldn't care! When it stops me from functioning, then it becomes an illness.

Link to comment
Share on other sites

My specialist told me some time ago that POTS is a common condition. It is undiagnosed for reasons we know--too many docs not familiar with it; but also b/c it is not so bothersome/problematic for everyone that they aggressively seek out diagnosis. One of my sisters was diagnosed w it after I was. She has never been disabled by it. She feels slightly dizzy/faint from time to time, but nothing significant. She's on her 3rd pregnancy, whereas for me, I couldn't imagine going through another one after my first due to severe POTS.

Hopefully your HR director understands that POTS ranges in severity.

Link to comment
Share on other sites

I think we forget that POTS is dysautonomia, and even with good vitals, our nervous systems are still messed up. A lot of time time, blood pressure and heart rate are not my main complaints with this illness. I think it needs a different name. I am tired of doctors assuming they know what this illness is just by looking at the name and thinking its just my heart racing when I stand. (gosh, what I would give for just that!).

Link to comment
Share on other sites

Hmmm...I am pretty sure that the law mandates that your work place must make accommodations for you if you are 'disabled.' I would check with a lawyer about that. Have you checked into getting federal disability, and do you have a disability plan from your work? If you think that you may not be able to work sometime down the road, I would definitely apply for federal disability now. It's takes quite a long time to go through the process, and most people won't get it until their second or third appeal. If you have any questions about this, feel free to PM me. The hardest part about working for me was that I never knew on any given day how I would feel - and I had to quit work about 2 1/2 years ago.

If there's anyone else higher in the food chain that you could talk to instead of this woman, you might want to try that, too. Good luck!

Link to comment
Share on other sites

Thanks for the input and advice, everyone. I don't have disability and haven't yet applied for it, but I'm starting to think I probably should. I was just diagnosed about a month ago, so I wasted a lot of time feeling bad and not knowing the cause of it. This has definitely interfered with my ability to work though; I just don't know if legally I'll qualify for disability. I don't know anything about it actually.

Unfortunately I don't know if there's really anyone else I can talk to in the human resources department. This woman may have thought she was being comforting by saying she had this too, but it felt really belittling to me. It was frustrating because she acted like she really understood what I'm going through because she has the same diagnosis, but she was so far from understanding it's not even funny.

I'm so freaking exhausted today, it's tiring just to hold my hands at the computer. But I'm really grateful for all the understanding people on this forum. Sometimes I don't know what I'd do if I didn't know there are others out there who understand what this is like.

Link to comment
Share on other sites

POTS is just a name for tachycardia when standing. POTS is not caused by the same mechanism in every patients, some have very different and even opposite mechanisms at play, some which may cause more debilitating symptoms than others. Some have pooling others have excessive vasoconstriction. Some have low sympathetic outflow, others have excessive sympathetic activity.

Secondly, not every POTS patient has the same level of symptoms, just as with any condition. MS as an example can cause nothing but tingling hands in one patient and cause progressive and rapid deteriation and death in another.

When I was involved in a study I met POTS patients that experienced nothing but a racing heart at night, and others who were bed bound. Its a spectrum.

Link to comment
Share on other sites

In the past I would have easily met the criteria for POTS as we have plenty of 24hr ECGs showing my heart rate at 120-140 during the day when I was sending relatively still (eg waiting at the train station). Back then I didn't feel particularly ill - maybe a little breathless and fatigued but nothing that made me see a doctor about it.

In 2004 a viral illness turned what was probably compensated POTS into a full blown disabling illness with me feeling dreadful every moment I was upright and fainting many times per day.

The underlying cause of my POTS is Ehlers-Danlos Syndrome. My younger sister has never been properly evaluated herself but my rheumatologist diagnosed her and my Dad with EDS based on what I told him. My sister has recently stated to complain of vague tiredness and heat intolerance. I did a poor mans tilt test on her an it showed tachycardia 100 lying down and 124 standing so not quite enough for an official POTS diagnosis but close enough to suggest that she does have POTS. Now at the moment she functions perfectly well and can dash about like most people in their late 20s. I believe she has POTS but is not disabled by it at the moment (and I hope she doesn't ever have to go through the experiences I have over the past 7 years).

You should make a list of the aspects of your condition that make work difficult and a list of suggested accommodations that would help you overcome your disability (eg less hours or flexible hours, a footstool to elevate your legs, access to cold fresh water, able to take frequent short breaks to walk about and get your circulation moving). Employers have a legal responsibility to make reasonable accommodations to enable you to work.

Good luck,

Flop

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...