Do you work?

[SusieQ]

Hi guys...

Okay, my question of the day is do you all work? Full time? Part time? From home? Office?

I've never had anyone that i knew who suffered from POTS, etc. so i'm full of questions as to how others handle things.

I currently work full time in an office. As of yesterday, my dr. has increased my propanlol to 3x / day but yet i passed out 2 hours after taking the second dose yesterday afternoon. We are thinking i'm exerting too much to try and work a full day, every day and are wondering if i should cut back- especially during the summer months when i have more problems. any thoughts or suggestions are greatly appreciated!

Have a great day!!

Susie

[Merrill]

Susie, are you taking anything in addition to the beta blocker? People with pots are often (but not always--I'm a case in point) prescribed beta blocker AND midodrine (or florinef) together. If you're passing out more on beta blocker alone, you should definitely speak to your doctor! With the right combination of medications and lifestyle changes (including increased salt, fluids, compression hose), you may be able to continue working--and keeping whatever schedule you want and feel comfortable with. Passing out at work--or anywhere--is not a good thing... I hope you can talk with your doctor about how you're doing on your increased dose.

(To answer your question, I believe I've had pots since I was a teenager... I don't pass out; my heart rate is very high. I have always been able to work full time--but I've always had jobs where I sit all day at a desk with minimum outside stimulation/interaction.)

best,

merrill

[danelle]

Susie,

First of all I see you are a newbie, WELCOME!!!

Secondly, I had to quit my job as a RN last June due to POTS, etc-98% from the POTS. I fought it as long as I could but eventually it got the best of me. I am trying to get my SSDI-which is a joke but that is another story.

Here is a little of my hx in a nutshell.

I have had sx of POTS since I was 18(some since I was a child but they really came out at 18). I think my first pregnancy really brought it out but ultimately I was born with it. From that time on, I haven't been "normal". Much tachy, etc. I took on odd jobs from time to time. Going to many drs trying to find out what was wrong, even a few hospital stays but because I was ayoung woman-it was all in my head.

Anyway, I just learned to deal with the symptoms but limited myself to things I could and couldn't do. OVer time, things got worse. With my second pregnancy at age 21, I had multiple problems with my POTS -but once again didn't know that was what it was. When I went to nursing school things got worse again but I somehow managed to make it through.

I tried to work full time as I was orienting as a nurse but was unable to due to the POTS-still unsure what was causing my cardiac sx, etc. I worked part time for 9+yrs then went to PRN due to my increasing sx. They continued to get worse and I declined rapidly. I FINALLY got a dx last year of POTS, along with fibromyalgia, and a few others.

Now that I have drug my story on, I HAD to quit last June. When I went to work(I worked in the hospital) I would end up in the ER or get sent home. Finally, I took the advice of allmy coworkers, family, friend, and the signs God sent me(which I asked for) and resigned. It was one of the hardest thngs I have ever done in my life. I stillhave a hard time with it. but that has taken a back burner becaseu my 17 yr old was just dx with POTS on April 7. It devastated me and tore my heart to shreds. Didn't know you could live with a shredded heart!! He is having a very tough time right now but that is another story too.

To answer your question-NO I can't work. Would give anything if I could. but first would give anything if my son could be cured.

Sorry to babble, welcome aboard, take it easy, pace yourself at work, take care of yourself because noone else will, and be good to yourself, don't be too hard on yourself if you can't do something-just advice from someone who has already been throough it and I am still working through these issues.

Hugs,

Danelle

[danelle]

Ditto to Merrill's advice about the meds and alternative tx.!!!

[Ernie]

Hi,

I had POTS and NCS since a child but always managed to compensate until I crashed hard 4 years ago. I had to stop working and was bedridden for almost 3 years. Now I can walks about 50 feet at a time and use the wheelchair when I got out.

I was passing out more when they gave me Metoprolol so Dr Golstein gave me Propranolol and Midodrine and that helps a lot.

Good luck

Ernie

[SusieQ]

Susie, are you taking anything in addition to the beta blocker? People with pots are often (but not always--I'm a case in point) prescribed beta blocker AND midodrine (or florinef) together. If you're passing out more on beta blocker alone, you should definitely speak to your doctor! With the right combination of medications and lifestyle changes (including increased salt, fluids, compression hose), you may be able to continue working--and keeping whatever schedule you want and feel comfortable with. Passing out at work--or anywhere--is not a good thing... I hope you can talk with your doctor about how you're doing on your increased dose.

(To answer your question, I believe I've had pots since I was a teenager... I don't pass out; my heart rate is very high. I have always been able to work full time--but I've always had jobs where I sit all day at a desk with minimum outside stimulation/interaction.)

best,

merrill

<{POST_SNAPBACK}>

[purplefocus]

Welcome to the forum......I know you will get alot out of here. There are times that I don't know what I would do with out the support of these guys..... For your question about working. I am also a nurse.........had worked for 17 years then had to quit Feb. 2004 due to POTS......passing out in patients rooms is not a good thing, lol. I do miss it and hope to get back to that one day but for now I stay at home and I did get approved for SSDI. I am currently working with a doctor that actually knows about dysautonomia and we are goaling for my return to work. Can't ever give up hope.

purplefocus

[ariella]

hi Susie

I'm also a Newbie here...

So about work, I'm an artist/musician, there are days I'm able to concentrate and there are days I can't. In fact one of the first signs that something was wrong with me is that my hands would become very weak for seemingly no reason, and I couldn't focus and start tripping up on the guitar strings. Too short of breath to sing normally. So, I would do my painting and music at my own pace. When they started treating me with meds it was like I suddenly had my life back a good several hours a day, I took my music right away into the studio to record with like the biggest smile. And redid a lot of paintings that looked just fine to me with brain fog. One of my closest friends is a very accomplished musician (right now I'm more of a wannabe!), I remember seeing him and saying God gave me back my voice for half an hour last night, it's the most awesome feeling in the world. I think I was crying --really--from joy.. But now the meds seem to be hitting a slump and I had to decide what to do, I'm pushing it and going for it...guess it's my way of fighting. Thankfully the people I'm working with are very supportive, so when I space out on them they're patient about it. If I had to commit to a 9 to 5 job, don't think I could, but then again I'm the mother of 5 youngish kids (ages 3 to 13), that's five full time jobs with overtime. But I guess what I'm trying to express is that continuing to work in some capacity is a real lifeline for me, and a great distraction.

You can sit for long periods of time? I get pretty dizzy if I sit at the computer for more than an hour. If I had a desk job I would definitely get up and walk around every so often.

All the best

Ariella

[morgan617]

Har, I work every morning, I pull myself out of bed, feed my dog and cats, give them their meds and take mine, then sit. I am exhausted by then! But until two years ago, I worked since 13 (am 50) and was a nurse for 30 years. morgan

[kare]

I've had POTS since 2nd pregnancy. (18 years ago) Never had to work until our finances got so bad, now I am taking part time job as "nurses' aide". Very fatigued and weak most days, hard to imagine ever being able to do fulltime job, but I am hoping for the "magic meds".......w e will see how partime job goes..... (I never faint just feel crummy and weak and brain fogged...... sigh.......)

[Brwneyedchica]

I'm currently working at a hospital, 32 hours a week, and that's considered fulltime. I was in school for nursing, but kept having to withdrawl from classes due to illness. Now i'm lucky if I make it to work 4 days a week. I love my job though, and I love being in the hospital environment (as long as i'm on the giving end of the care ). I am currently on a beta blocker as well as florinef, and do all of the things mentioned above including compression stockings, fluids and salts. If you need to cut back than do so. Only you know how much your body can take. Good luck!

~ Brwneyedchica ~

[Kitsakatsa]

I work full time as a Business Manager of a clinical area in a hospital, but it is very hard. This is the formula that has worked for me:

4:00 am Wake up and take all nausea/stimulant meds and 3% hypertonic solution via picc line.

7:00 am Coffee to add to stimulants and saltines

9:00 am Go to Work/take more stimulant meds

12:00 pm Take more nausea meds and try to eat

5:00 pm Home from work and directly to bed for nap

6:00 pm start 3% hypertonic solution/last dose of nausea meds/dinner

7:00 pm Room Temp shower

8:00 pm Bed

I found that I feel horrid during the day and much better late afternoon-night, so I get up early now to trick my body into thinking that I have a 3-11 job. It works!!

I think the ability to work has been from my Angel Doctor and the dedication to stick to the schedule no matter what. For me- being able to work is ALL about regimen.

Hope this helps. Working and having POTS is fierce and nearly impossible. I just have to get through it day-by-day and thank the heavens that I don't have a highly physical job!

[lalalisa]

Welcome to the forum!

I was working full time until I got POTS. I don't work now - I do best if I'm only awake for about 4 hours at a time and then sleep for a while.

Each of us seems to eventually find out a formula for feeling our best. Thankfully my husband is supporting us and I can stay home and rest. (I can't imagine the stress I'd be under if I had to try and support myself right now.)

For me stress seems to make my symptoms WAY worse - it's good to find a low stress job if you have to work, that's for sure!

Hang in here!

Lisa

[sally]

Hello

Do you notice there seems to be a lot of people with this problem that are teachers and medical professionals?

Kitsakatsa,

If you don't me asking, what type of anti-nausea medications do you take?

I think alot of us seem to have the same difficulty in the morning hours verses nighttime, I know in our family, we do most of our physical things in the evening or late hours...it's usually when I come alive. Mornings are horrid so I don't even try to function much then. I changed my shift to a later part of the day which seems to work out best for me because when I worked early mornings, I wasn't worth much until about 2pm and felt awful all the time. But I also went part time due to health reasons, I felt physically I just couldn't keep up and usually when I pushed myself I paid dearly for it. Although Midodrine helps a great deal.

[Jersey Girl]

I "work" everyday to try to improve my health and take care of my family. I did work outside the home but I was forced to resign when I couldn't get out of bed without getting headaches that made me cry, excruciating chest pain and tachycardia and shortness of breath and my extremeites turned blue and purple. Martha

[Eli6596]

Hi

Welcome!

I work partime which for a medical profession is around 9am to 5pm, or later. I have a recliner in my office and use a motorized scooter to get around a modest sized building to save my energy/mental clearness for my patients. Lots and lots of medicine helps me tremendously, but the assist devices are worthwhile for me too. I was really shy to use them for years.

After POTS worsened following my second pregnancy nearly 4 years ago, I was asked to leave my job because I could not take call (work up to 36 hours straight). I found a part time job in another state without call and without weekend responsibilities. There are some colleagues around me who are resentful because I "get away" without call. GEE, I would MUCH rather be well and take call, rather than be sick.

Thank God I can work. My identity is too tied into what I can do. I am trying to change that mind set but it is very, very difficult for me. The hardest thing is juggling a stressful job, two small children (9 and 3 yrs.), AND a chronic illness. I try to think of the things with which I am blessed and not dwell on the missing things. That keeps me going.

Karyn

[michiganjan]

I have been quiet because I have been too busy working to post.

For several years I was able to do part-time office work. It was sitting down, mostly phone work and computer and short hours. However, in addition to POTS, I have multiple chemical sensitivities, and I only lasted until the business I happened to be working for redecorated, or renovated. Since these things happen regularly in the real world, I decided I should work at home.

I have been able to work at home on the computer. For the past few years, I have worked as a freelance editor and writer specializing in Language Arts materials for Teacher and Student books at the elementary level. This has been a good job because I can write at midnight if I want, or take a nap at any time.

I discovered I was good at writing "readers." I define a reader as a text written for a specific grade level and a text that introduces new vocabulary and defines the new words in the context of the text. A reader is written in a manner that facilitates the reader to use reading skills, such as compare and contrast, summarize, etc. (KEEP READING--THERE IS A POINT TO THIS I PROMISE)

I love to do jigsaw puzzles--it is one thing I can do with the POTS. Last year, in March, I thought someone should put readers on jigsaw puzzles in order to make reading a hands-on activity. We all get ideas that make us think . . . "Someone ought to do that," and then just forget about it. This time it was different somehow. and I decided to actually do it. I found out how to get jigsaw puzzles manufactured. I wrote the stories and paid student artists to do the puzzle art. I talked a local school into testing the puzzles for me. I call my puzzles: A Story Piece by Piece. They have numbers on the backs so the puzzles can be worked a third at a time, so the story can be read in order with a beginning, middle, and end.

Just yesterday, I sent the computer files for my first 6 puzzle designs to a printer. The printer will take the finished prints to the factory. The factory will make the puzzles, and the warehouse (who will also fill orders) will pick them up from the factory. There is now a huge hole in my husband's retirement savings (he is already retired) and I am on the brink of having over 5,000 jigsaw puzzles in a warehouse with rent due every month for each skid. So, while they are being manufactured, I will now be writing a brochure and making a website.

HERE IS THE POINT.

I have wondered and wondered how I am able to do this when I could not do much at all with POTS for years and years. I think part of the answer is that it is something that I can primarily do on the computer, at home. I am very good at sitting.

But the BIGGIE answer is PASSION. For some reason I have a passion for creating these reading puzzles and getting them out there. And it is that passion that has made it doable with the POTS, multiple chemicial sensitivities, and chronic fatigue. I am almost 58 years old and it has taken until now for me to feel passionate enough about one of my own ideas to jump in and take a chance. It feels wonderful. If this venture turns out to be a complete failure, I will still feel happy for having tried.

I wish everyone of you a huge dose of passion.

Michigan Jan

[yogini]

I've worked 80+ hr weeks in a law firm for the past several years. I actually love my job, other than the hours, and had been meaning to find something a bit more reasonable. But the market has been so tough and then I developed POTS last year. I was out on short-term disability on and off for a total of 3 months. I really don't know how I managed to make it to work for the rest of the year, because I was so dizzy all the time and could barely walk. I was lucky to have a lot of help from my family and friends. It was probably just as hard getting to/from work as it was actually doing the work. Though my firm was pretty understanding and let me take on less, I would come home every night with a headache, exhausted and nauseous.

Finally I couldn't take it any more and I switched to part-time in January. This has been a godsend for me and my health has improved by leaps and bounds. But now they're trying to pressure me to come back full time. I am trying to put them off while I look for another job. I would seriously quit and take time off, except I am worried about health insurance and how to explain to future employers...I would have to go back eventually.

This is such a difficult issue. I think this is a highly personal decision for each of us, based upon our individual circumstances. It is still comforting to know that many of you are in the same boat.

-Rita

[Kitsakatsa]

Sally,

You asked about my nausea medications.

I take Injectible Zofran 8mg-10mg 3 times a day (picc line), Compazine, Tigan and Marinol. My nausea breaks through all of these, but the 3% IV solution helps the nausea medications to work. When its bad I take two 500 ml bags a day. I've found that you have to take the Zofran continuously for it to work and the only thing that I can hold on my stomach is carbs. So- I've been carb queen for a year and a half. I haven't gained weight because I eat very little, but I haven't lost because I'm at work or down in bed. I really get the sense though, that the nausea meds are not working with the part of the brain that is communicating the nausea. Do you guys think that is so?

[Kite#7]

Hello All,

Try to work everyday!! However some are better than others and all days roll into the next. My wife and I run a Personal Training / Yoga Studio - Oh & a household of 5 kids runs us. We have cut back back dramaticly over the past couple of years , but I continue to train some wonderful clients that inspire me as much asI help them. Gone are the days of 5am to 10pm with a cadre of different classes and variety of small seminars. We are in the process of closing up the studio and moving to a new home by hte Ocean in BC were I have already been offered a position to continue to train , as well as perhaps teach a bit , so if the Body co-operates and the wallet holds out I will continue to Work.

As far as drug regimen I continue to take 400 mg Topamax , 40 mg dilaudid ,

10 mg Paxil , 4000mg Evening Prime Rose Oil , 1000 mg BORAGE oil ,

10 g Creatine , 1000 g N - Acetyl Cycsteine , 5 ml buffered vit C , 1000 mg Magnesium , 500 mg Calcium , 500 mg Milk Thistle.

Like all of you I hate this regimen , but it keeps me going. Sometimes BARELY , and i wish deeply that I never have to ingest another pill again. My kids though don't particularly care if their Dad is in the Studio , Driving the Car , Training , teaching , -- just that he is not convulsing on the floor , or stuck motionless , pain sticken in bed or a chair unable to speak. Drugs be ******. Same with Dysautonomia POTS ,OPCA MSA. My will for now is not yet on paper its in this "DISORGANISED" body and contempletive mind. My work now is clear - 5 KIDS 1 WIFE this Dad. IF My Body is my familiy's weakiest link than My family is going to be OKEY DOKEY and I'm still WORKIN'

SORRY FOR THE RANT

SLAINTE' Kite 7

[EarthMother]

I work full time. But I take a lot of sick days and most of my vacation days are used for sick leave as well. I must say, some years are better than others. It seems to go in cycles.

After my official POTS diagnosis I talked with my boss about formally working at home part of the day, and this helps a great deal. I take lots of breaks -- a two hour meeting is about it for me, before I have to go lie down. But then I can get back up and make it in again later in the day.

At work I have an office chair that reclines with a pop up foot rest.

If I have a big meeting/presentation etc. I notice that I do better if I do not eat -- just juice or very light things to keep sugar level up.

I take a long lunch and will lie down for up to an hour afterwards until I can stand again.

I tend to feel better at night, so I bring all my paperwork home, I have a high speed connection into work so there is lots I can do around the clock to ensure I am still giving my employer the value of a full time manager.

Good luck finding something that works for you.

EM

[Dawg Tired]

I had to completely quit working Sept 11, 2002. I had been getting worse and worse, Dh was having to drive me to work because I had to quit driving in about June of that year but my last day I made it in and managed to work for about an hour and a half until I realized I couldn't sit up any more.

[Michelle Sawicki]

I think most of you know that in addition to running DINET I also work part time in a library. I specifically chose library work when going back to work with POTS because I had worked at a library while in college and I knew it was low key and wouldn't require a lot of standing. The only time I had a real problem with work/POTS was when they asked me to teach classes, which required standing for hours at a time. This proved to be too much, and I would spend the following day in bed if I taught a class. However, I was able to get a doctor's note and now I don't have to teach classes anymore.

Working in a library is probably not something I would choose if I were completely healthy. I still have a "go go" personality, but I just can't "go" like I used to. And I must confess, at times it can be terribly b-o-r-i-n-g. However, it is something I can do to make a little money, so I do it. There are jobs that some of us healthier people with dysautonomia can do. Sometimes you have to re-evaluate where you are going and what you are capable of. I can't say I'm living my dream by working part time in a library, but I can say that right now it works for me and I am happy.

I wish you the best,

Michelle

[calypso]

I work part time as a copy editor at a newspaper, and the other part-time job I have is doing massage therapy. I cannot see more than 5 clients a week (although in my pre-POTS days, I saw this many per day). I would not recommend massage therapy to anyone with POTS, as it involves a fair amount of standing and strength. This is why I am always complaining about how weak I am ... some days I find it's so hard to satisfy my clients when I can't use the pressure they'd like, etc. But I have found ways to adapt, like using force of body weight as pressure, etc.

My copy editing work is great, but for a couple hours each day, I am on a very tight deadline. There have been times when I have had a tachycardia attack and could do nothing but sit here and try to focus on putting together the front page of the paper. It has been difficult at times but I always come through somehow.

Amy

[Ernie]

Hi Amy,

I can relate so much to not being able to satisfy your massage clients. The last years I was still able to work, some clients were complaining that I was not putting enough pressure but I just did not have the muscle power. I used my body weight and had so many injuries: carpal tunnel, tendinitis, etc.. that I had to see a PT 3 x a week just to be able to use my hands to work. I lost many clients because I could no longer perform at the level they expected me. I was frustrated because I knew how to do the technique but I just could not do it. I continued for about 7 years until I crashed 4 years ago. I did not have too much trouble standing up for the massage because I was moving all the time. I only fainted 3 x doing a massage. I was very careful about it and would sit down when I would become too presyncopal.

Ernie