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New to Dysautonomia diagnosis (about a year ago). Dr's haven't done much more than feed me some extra pills. Most all my education has come from my own research. My question is: did any of you have to quit working because of Dysautonomia? If so, how long after your diagnosis did you have to stop? That is really my worst fear. My coworkers are aware of my issues and they try to make concessions for me. Good on one hand but that can hurt when they get tired of the doing extra for me. Any comments are welcome. Thansk.

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32 minutes ago, Big Guy said:

New to Dysautonomia diagnosis (about a year ago). Dr's haven't done much more than feed me some extra pills. Most all my education has come from my own research. My question is: did any of you have to quit working because of Dysautonomia? If so, how long after your diagnosis did you have to stop? That is really my worst fear. My coworkers are aware of my issues and they try to make concessions for me. Good on one hand but that can hurt when they get tired of the doing extra for me. Any comments are welcome. Thansk.

Welcome to the forum, it is nice to have you here. I was diagnosed with POTS in March but I had to quit working about a year before that, I actually fired myself. And I work out of my own house--I can't get to work on time when I do work and I don't show up for days without telling the boss, lol--I'm the boss. I own a small non-profit, I still can teach online but a lot of the day to day functions I had to end. Fortunately, my health insurance is through my  husband's job or I would have had to continue. I was tested at Cushings/Chiari Institute and found to have short term memory loss, not from being deoxygenated (hooray!) and I get confused rapidly. The information gets in but I am looking in the wrong file draws to retrieve it. I do neurotherapy daily to help me with that, the fog and blackouts. My balance is also fried and I have vertigo.

I can't do the things I used to do so I learned to do other things or do them differently. I still have to do some work but I must do it in the evening. Daytime has too many triggers of light, sound and motion. I don't know the work you do but if your company can accommodate you and your family is understanding, I would suggest switching to second shift or the red eye--the middle of the night is for me a great time of creativity. Maybe you can do a split shift of some work in the afternoons at your place of work and do the rest at home in the evenings. You said they can be understanding--this might be a compromise that makes everyone happy. 
 

I wish you well, I understand your angst--so very many of us do. This is a hard time and the decision to continue working, taper off or even entirely quit is a very difficult and emotional decision to make. Support organizations like this are very important. I was so lost in the fog but I found my way here, I feel welcome, at home and safe here. The forum members have been through so much themselves--when you have a hurdle, they can help you get past it. 

 

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Thank you so much for your quick reply.  The impact of reading another "dysautonomiac" discuss symptoms is surreal. The fact that you know what it feels like adds so much more credibility to your note.  Of course I wish you the best in your journey as well.  I am an Internal Auditor for a small university.  Most employees here are a little older and have gone through physical challenges of their own (e.g. cancer, diabetes), which makes them more caring and patient with me and my issues.  I've found that the university setting is also more compassionate that corporate America (that's probably why I'm here)  I really enjoy my work and I'm not one to find busy work at home so an early retirement would not serve me well at all. Luckily my boss has already suggested many of the options you listed. I simply have to find out the best arrangement for myself.  

One of the negatives for me is that I live in a small town so the nearest doctor for dysautonomia is 4 hours away. (It could be worse) My (low) BP seems to be the biggest worry currently.  But my doctor discusses my symptoms via email so we are working through it. 

I've always been very active: played (American) football, martial arts, etc. So not being able to be active is killing me. But I'm pushing to find the solution that will get me back in the game.

Thank you so much for your comments! I wish you all the best. I greatly appreciate the time you took to respond to my note. 

Thanks.

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I did't have to quit, but after plugging along for a while I decided to take some time off.  I was able to go back to work full time.  You should look into your legal rights - employers are generally required to try to accommodate you, within reason.

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I'm currently only working part time and even that drains me. It's been incredibly frustrating to not be at the level of productivity that I used to.  I really hope to get a handle on my health again so I can go back to working full time 

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Hi Big Guy

Nice to meet you. Like you, I was diagnosed a year ago. I was off work at first for about 1 1/2 months, then managed to get back to work after starting florinef. But it truly took me several months to feel capable again. I've been pretty good since then...although, I still recognize I have deficits that were not there before -- mostly with cognitive processing and "data retrieval", if you will. I used to be an extraordinary multi-tasker...now I have to write myself stick-it notes and think twice as hard about coordinating the finer details of my job.

I fervently pray that this doesn't get any worse,  but when I'm tired or try weaning down off florinef, it does get worse. Solution? I make 8 hours of sleep on work nights a priority and I don't make excuses for sleeping in on weekends. I need it to refresh after a week at work.

It's harder than it used to be... fatigue is constant. I worry that early alzheimer's is in my future...but I also know that cognitive difficulties are a part of this condition.

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I had to stop going into the office for a few months after my POTS kicked in and knocked me out of condition. I ended up losing my job shortly after getting to a point where I was in a stable enough state to go back.  I started a new job a couple of months later and luckily I've been stable enough that it hasnt significantly negatively affected my ability to work since then.

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Hello and welcome!  I fought leaving work for a very long time.  I reported directly to the owner of the company who was wonderful about making concessions for me to do some of my work from home, as well as never giving me a hard time for all of the time I had to take off.  However, my illness grew to the point where I could only function with resting periodically throughout the day.  I tried working mornings, returning home for a 2 hr rest, and then going back to work in the afternoon and staying late to make up the time.  That worked for a short time period but after a while, I couldn't last long enough in the afternoon to fulfill my time obligations.  My boss graciously reminded me that he didn't care as long as I was still achieving my goals. But that became difficult too.  My staff were unbelievably supportive and watched out for me many times when I became ill at work.  They did what they could to help me retain my dignity - not easy to do when you crash to the floor in a dress!  Throughout this time period, my doctors kept telling me that I was not doing the best for myself medically by continuing to work. But I loved my job and didn't want to leave.  

I should say that not everyone that I worked with was so understanding and wonderful.  There were many other managers & staff that expressed doubts about how "really" sick I was since I looked so good.  They were resentful at the extra help I was getting, even though before becoming ill, I was the employee skipping vacations while they were at the beach but some people just like to think the worst of other people and I find there is little you can do to change that.  

As my dysautonomia progressed, I was having "episodes" everywhere!  I worked in an old historic building with a long staircase to the 2nd floor where all of our meetings took place.  I can't count the number of times the management staff had to wait uncomfortably while I had to lay down at the top of the stairs outside the conference room, until I could sit up enough to get to the chair.  While I would seem okay afterward, I was far from ok.  My head would be pounding and I was usually so disoriented that I gained nothing from being there.  Not to be too graphic here, but during the worst episodes I would lose all control of myself - sometimes making it necessary that I return home afterwards - making it even more difficult to try again the next day. 

A part of my job involved doing presentations for clients at their businesses.  That really was the thing that pushed me over the edge toward leaving work.  Unlike being at the office, I had no one helping me maneuver when with a client.  I clearly didn't discuss my medical situation with them, so I couldn't ask them to slow down their pace or avoid the stairs up to their office or refuse when they wanted me to take a tour of their facilities, etc.   So I started avoiding this part of my job also.

Finally, I realized that I wasn't doing the best for anyone by staying.  

I will tell you that it was the best thing that I could do.  Since leaving, I have been able to focus on my health and find new ways of doing things that have helped me find my way back to feeling like a productive, valuable person.  While working, I felt like a failure everyday towards the end.  I am so, so much better at avoiding episodes by resting, slowing down when I need to, moving or not moving depending on how I feel, etc.  I was able to adapt to my new life at my own pace.  I never would have been able to do that while working.

I wrote an article for our newsletter about things to check into and consider about whether to continue working or not.  You might find it helpful.  
https://www.dinet.org/content/information-resources/newsletters/the-challenge-of-working-with-dysautonomia-r141

Whatever you decide, it's not easy, but it all does get better.  I found that trying to go through life as though I wasn't ill was far more stressful than adapting to a new way of going through life.  I wish you the very best in whatever you decide.
 

 

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28 minutes ago, edriscoll said:

I will tell you that it was the best thing that I could do.  Since leaving, I have been able to focus on my health and find new ways of doing things that have helped me find my way back to feeling like a productive, valuable person.  While working, I felt like a failure everyday towards the end.  I am so, so much better at avoiding episodes by resting, slowing down when I need to, moving or not moving depending on how I feel, etc.  I was able to adapt to my new life at my own pace.  I never would have been able to do that while working.

 

I want to be you when I grow up.

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Thank you all so much for sharing. What a truly brave person edriscoll. I appreciate your candor. 

This has been a great experience for me. Just knowing there are others out there with this crazy condition and who ask themselves the same questions, etc. As I type, for the second time this week I slept for about 2 hours. It is so difficult to concentrate on anything. I fell out when I got home last night (but no sleep to be had, my body hurt too much)

I'll keep pinging you all for good words and suggestions. It seems I'm a baby when it comes to living with this "beast." 

I do have extra motivation in getting my old me back in that I have a young and very active daughter. She wants her father to play sports with her again and go on long hikes. It will happen again.

Thanks for all the help. Anything you have to offer is helpful.

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Big guy, you are far from being a baby and I am far from brave. You show your bravery by being able to admit you need help & asking for it. And I want to put my journey in perspective for you so you don't feel like you should be further along or not strong enough with where you are now. It took me a total of 3 years to go through the onset of symptoms to leaving work and another 3 years at home struggling before I got a handle on things and adapted to the "new me". It was far from a short trip! And I have 3 granddaughters that motivated me. In particular a 4 year old that spends a lot of time with me. She has developed an amazing empathetic side of herself & helps me on bad days. She has adapted to the way life is for me & she will say " you look tired, how about we paint?" I think being honest with her about what I can & can't do has been a blessing for us both. You will find d your way & your daughter will be by your side whether you can play sports or not, good days & not so good ones.  Find your own "normal" & enjoy.

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  • 2 weeks later...
On 20/10/2017 at 10:21 PM, edriscoll said:

 

I will tell you that it was the best thing that I could do.  Since leaving, I have been able to focus on my health and find new ways of doing things that have helped me find my way back to feeling like a productive, valuable person.  While working, I felt like a failure everyday towards the end.  I am so, so much better at avoiding episodes by resting, slowing down when I need to, moving or not moving depending on how I feel, etc.  I was able to adapt to my new life at my own pace.  I never would have been able to do that while working.

So true. Lovely advice. My life has also been much better since I started working part time from home. I still have my moments but I'm largely in control and that's a great place to be.

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Hi Big Guy,

I don't know if it helps, but "from the outside" I lead a "normal" life now. I was diagnosed 11 years ago.  I have always been self employed, so my work dwindles when I have flares. Two years ago I started an exercise protocol for POTS. It helped. My goal was to go back to Karate (which is really good for POTS since it is super-core intensive and not sustained cardio) and I have, but it isn't easy. It hurts a lot more, I get dizzy and can't spar long or be as active as the rest of my classmates, but I am doing it. If I pass the next two belt tests, I will be a black belt this time next year.  My last cardiologist was very negative about me exercising. He said "POTS patients can't have physical goals," and "why do you want to do karate, you don't seem like an angry person." I did not go back after that appointment. Monday, I saw another cardiologist who I hope will help me.

It is possible, and I keep hoping and coping with what I have every day. 

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Hi everyone. I was diagnosed with POTS in January of 2012. I am a teacher. I am new to this forum, but I feel blessed that I have found it. I'm a complicated mess @ this point. Lol. The beginning was horrible, bewildering, and I felt insane. The symptoms started a year earlier and I was hospitalized, but they couldn't figure out what was wrong with me. Best follow-up diagnosis given by a cardiologist ever, "It will happen again, but we don't know what's causing you to pass out." Awesome.

I then found a neurologist in a larger city who based on symptoms said he thought I had POTS. What is POTS. Research began on my end and I was devastated. Kept passing out everywhere. Had to have someone around when I showered, etc. Eventually, positive tilt table a few weeks later. Bp meds-propranolol. Been on midodrine, salt tabs, Gatorade, fluorinef. Felt so sick. Caused me to throw up daily. FMLA became part of my language started to get quite a bit better after a few years, doing a lot more, just taking propranolol. Now, I am back at square 1 and sooo confused. Went to ER which was a joke. My heart rate was averaging 58-63 bpm. No bp issues. No energy, passing out, tremors, and weak. Needless to say neurologist is saying nothing besides take a salt pill. Ok. Doing that. Took a slightly lower dose of bp med last night and woke up with 100+ hr. So frustrated. Read mri dictation. Here's what I know. I have a pineal cyst, atrophy of mamillarry bodies and hippocampus and POTS. Neurologist has only discussed the cyst with me. Any of this sound familiar to anyone? Anyone relapsed this badly? Anyone abnormal MRI? I appreciate anything. Thank you so much 😁

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welcome to the group! I started getting sick in July 2003, I was working retail then. It took about a year to be diagnosed with Neurocardiogenic Syncope and then Pots... and I was still trying to work then but it was getting harder and harder. And then my employer was trying to find ways to fire me because of being sick. Finally in 2005 my health was going downhill and I ended up being admitted to the hospital and was told that I could no longer work and had to go on disability.  I ended up being fired before I went on disability. I was in my late 20's.

I wish I could work at home but I have so many days where I can barely do anything because of my other health conditions. So working from home isn't a option for me.

Becca

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