Working full-time with POTS

[SonM]

Hello, 

I hope this finds you all well! 

I was diagnosed with POTS in 2013 - after a two year period of confusing doctors because of the variety of symptoms that are related to POTS.  I decided to complete my Masters in Social Psychology because I could not work due to the severity of the condition and I had to do something to keep my mind occupied. Since I graduated in 2016, I have been working on a contract basis in academia as a Research Assistant. However, this is not a standard full-time 9:00 - 17:30 job and I still feel like I have days where I cannot focus due to brain fog, headaches and stomach pains (although I always ensure I complete any tasks that I am responsible for). Do any of you feel this in full-time work? If so, how do you cope? Does your employer know about this and are they supportive? I am currently trying to find full-time work because I need stability and security and in a contract job this is not really possible. 

I look forward to the responses. Sorry for bombarding you all with so many questions. 

Sonal 

[Magosh]

Hi Sonal,

I'm being tested for POTS this week (although drs think I have it), though I've had symptoms for about 5 years.

In a sense I'm in a similar point in my life as you, having graduated from university in 2016. I experience many of the problems you do. My advice would be to try and find a line of work which can accommodate this.  Also, if they allow flexible working hours, and the ability to work from home some days, this is a massive plus. I'm very lucky in that my employer (public sector organisation in the UK) does allow for this, and if I feel unwell, I'm simply allowed to go home - they're far more concerned that you get the work done rather than how many hours you spend in the office.

Eventually you work out a routine - I live sufficiently close to walk to work which helps me a lot (rather than having to use transport). I personally feel the need to get up and walk around often to prevent me from getting very lightheaded at my desk.  

Feel free to ask any other questions

Magosh

[HangingByAThread]

Hello,

I have to work in order to support my children (but would love to have the luxury of staying home).  I was able to change my hours a few years back so that I start 30 minutes earlier (so it isn't as hot outside when I commute).  Also, I take the long way to work (bus plus subway) and take the local train rather than the express so I can sit the entire ride.  It may take me longer to get to work this way but I can sit and not do much walking to transfer between modes of transportation.  On bad days I call a car service and on really bad days I call in sick and use up all my vacation time.  I am lucky because my husband is able to pick me up in the car after work.  I don't know if I could work if I had to do the commute both ways.  I purposely live in the city and we did not buy a house in the suburbs (that my husband and children wanted) because I don't think I could handle the long commute (I am no longer able to drive).  Being close to public transportation makes me feel less dependent on others.  The people I work with directly know about my condition but the higher ups do not.  Luckily, we have a decent amount of time off and I've been here for a while so they know I'm a good worker.  I'm also good at hiding my condition.

[AmyKB]

I am a nurse and worked full time at night on an inpatient unit. So that means constantly pushing, pulling, lifting, reaching, and squating(to reach things on the floor without passing out) with very little sitting for 13hours. Honestly, it was hard. It IS hard to work full time with POTS. I managed by drinking nearly a gallon of water a day along and eating 6-8grams of salt, wearing waist high compression stockings, and as luck would have it I was diagnosed with ADHD so I have a prescription for ER methylphenidate (ritalin) which helps A LOT with the brain fog. Speaking of which.... because I am a nurse at a university hospital I have access to many research articles. I did find a few papers that stated that methylphenidate can actually be useful in reducing the symptoms of POTS. To be honest, I really think that medication plays a BIG part in my ability to work and work efficiently. 

 

https://www.ncbi.nlm.nih.gov/m/pubmed/20460983/ this article is not the same that I am referencing. It is similar but it seems they had a much smaller group of patients to work with. 

 

Unfortunately most doctors won't prescribe a controlled substance such as Ritalin for something outside of its intended use. :/ so short of faking ADHD I'm not sure what you can do.... 

 

p.s. I take 18mg ER. That is the absolute lowest dose you can prescribe. With POTS you have to be careful. While it DOES help in small doses it can be very harmful in high doses because it can overstimulate/stress your heart.

 

 

[SonM]

Happy weekend everybody!

Magosh: Thank you for your reply. How did your test go this week? How has it felt dealing with this for five years?

I am glad you are able to work at a pace that suits you. It really does help that you are within walking distance to your workplace too. I am moving to London in a few weeks, so I hope I may be presented with additional opportunities because of this. I currently live over an hour away from central London, so travelling to and from London everyday combined with a normal working day would be too much. I am currently considering whether I should apply to Civil Service, as I have heard that are very accommodating and offer flexible working. I am so happy that your organisation are understanding and supportive. Are they aware that you have/may have POTS? Sometimes I am worried that if a potential employer Googles this that they may overlook my ability to produce work to a good standard. Does this make sense? 

HangingByAThread: It's lovely to hear from you. I can imagine being a parent also feels very demanding at times! I am happy to hear that the company that you work for allowed you to change your working hours. Would you mind me asking how long your commute is to work? I am glad you are able to sit down for the majority of your journey to work. Sometimes when I am on the tube during rush hour the standing combined with overcrowding always makes me feel dizzy. I am rather lucky though because I often know when my body is going to give up.

It really helps when you have a supportive family and I am glad that your husband is able to collect you after your working day. It always helps when somebody knows how good you are at your work. I had the most supportive boss when I was a Postgraduate Researcher at the University that I gained my postgraduate form, but unfortunately the work was only on a funded basis so it was not permanent. In the role I am doing now I am able to work from home. However, although the wages are good there is not always work for me to do. How do your husband and children feel living in the city now? How does it feel having to hide your condition? I have become really good at doing this too, but sometimes I feel that I am deceiving people too... 

AmyKB: Your profession is very demanding, without nurses I don't know what anybody would do in the healthcare system. Go you! I also find drinking a lot of water really helps. I can notice the difference when I am really busy and sometimes find I cannot always drink as much as I usually do. Funnily enough increasing my salt intake has not really helped me, nor has any medication. The specialist I had was a wonderful man and really supportive. However, we both realised that the side effects of the medication were doing more damage than good. I am quite a petite lady and a lot of medication was too strong for me. I am glad you have found something to help with the brain fog. Were you diagnosed with ADHD after you were diagnosed with POTS? Yeah, I don't think I would be able to like about having ADHD, haha! It's great that you have access to so many research articles, I also do because of my job at the moment. Thanks for the advice, it is much appreciated. 

 

[HangingByAThread]

SonM:  Yes, being a parent is very demanding.  Luckily my children are getting older and don't need me as much.  You asked how long my commute to work is.  It is about an hour (I don't work very far from home but I live in a big city and it takes forever with all the congestion).  I used to get sick so much when I took the express train because it was like a human sardine can and I'd have to hold onto the pole (I find holding my arm(s) for a period of time makes my situation worse).  My children and husband have only known city living so they don't really grasp how hard it would be to have a home out in the suburbs (all the extra commuting plus mowing the lawn, doing all those additional chores) but they don't bring it up much. 

Sometimes I really resent having to hide my condition but I think people get tired of hearing about it.  I feel like if you have cancer or something like MS, people are very understanding but when you look normal and have a condition nobody has heard of, they really don't believe you.  People don't grasp the idea that it makes me sick to wait on a line (I guess if my husband as the one that had this issues, I wouldn't understand either). 

One day one of my kids even said to me "you always feel sick, when are you not sick" in response to me yelling at them for horsing and not going to bed when I wasn't feeling well.  Before that I never really thought about how this must make my kids feel.  I'm sort of toying with the idea now of taking the entire family to a therapist for a couple of sessions to address this. 

One positive thing I did recently is that I purchased a big key chain off of Etsy that says Medic Alert - Dysautonomia (it actually came from England).  In addition to the medic alert bracelet I wear, I hang this from my purse.  I find that if I need to ask someone for a seat or if I'm taking a while to get off the train (after sitting a while, I must stand up for about 10 seconds before I start walking out of the train and up the stairs) people don't give me a hard time.  I also notice that when the train is crowded and people are nearly on top of each other and I whip out my cold water bottle or ice pack to put on my neck, people do give me a bit more space.  I am a little embarrassed at times but I think if I have an episode I will get more help and sympathy.  (I once had an episode of bad, prolonged tachycardia on the bus about 2 years ago and as luck would have it, the bus was approaching a hospital and then stopped in front at a red light.  I asked the driver to let me out because I was having an issue with my heart and he refused and accused me of faking.  He kept on driving and then at that point I was unable to stand up or walk out.  Blocks away he finally pulled over and called me an ambulance.

Have you ever tried taking anything for the brain fog? I chose not to but Vanderbilt in Tennessee was willing to prescribe something to me (they actually offered, I didn't even have to press them).  I find that my brain fog has improved with salt tablets but it is still there. I get a bit forgetful (people write it off as being a bit "ditzy" at times) but I can pretty much function at work.

[SonM]

Hello HangingByAThread, 

How are you? I hope this finds you well and in good health. 

In my opinion, an hour commute to work is quite long. I am sorry to hear taking the express train made you feel so sick before. I am glad that your children and husband do not bring this topic up too much. They probably know that it would have been quite difficult for you if you had all moved to the suburbs. 

To be honest with you, not many people know that I have POTS. It is definitely an odd one because I do feel as though I have lost some 'friends' because of this. Many people cannot understand how you can look perfectly fine on the outside, but still be 'ill.'  I can totally relate with you about this. It's a pity that the society we live in is like this, however I cannot see this changing any time soon. 

That must of hurt when one of your children said this to you. How did this make you feel? If you do not mind me asking, how old are your children? Therapy may be a good idea. Have you spoken to your family about this? 

I am glad that this has been a positive experience for you and I am glad you have experienced some kindness due to it.  I cannot believe the bus driver would not allow you off of the bus at first...that is absolutely ridiculous. I am glad he finally came to his senses though.

No, I have not tried any medication that is specifically for brain fog. I have lost count of the amount of medications that I have tried, however because I am quite a petite lady the side effects often outweigh the benefits of medication. It is good that the salt tablets work a little, I may try this myself. People often do not notice when this happens to me. At times when people have been speaking to me, although I pay full attention to them I cannot digest anything they are saying. If only there was a cure! 

 

[HangingByAThread]

Hi SonM,

I'm actually having a pretty good day today and I hope you are as well.  Yes, an hour commute is long (half the commute is the bus and the other half the train) but the actual distance to my job from home is only about 4 miles, if you can believe that!  I tried every variation you could imagine including walking and then getting on an express bus but there are never any seats.  I just can't stand idly during the commute or I get really sick - better to creep along slowly in an air-conditioned seat.  I happen to live in a big city so traffic and congestion make the commute so long.  The folks I work with that live in the suburbs have it even worse (2 hour commutes - I could never do that).  Today I cheated and called a taxi to work and it was wonderful but at $15 it can get pricey if I do that all the time.  My commute used to be easier but the mayor is trying to get cars off the road by putting bike lanes in all over and that sort of backfired by making it take forever to get anywhere during rush hour (as you can probably guess, no way could I ride a bike).

Most people don't know that I have all these medical issues either.  For years I had tachycardia and a couple of ablations and people knew I had something going on because I had no choice but to wear a 30 day holter monitor (they were a lot bigger 10 years ago and difficult to hide the wires).  I think most people just assume I have heart issues - it is often too hard to explain the POTS symptoms. 

My children are 11 and 14.  It hurt me at first when my 11 year old said that I was always sick but then it actually made me quite sad because I remember being a kid and my mom had severe attacks of migraines with sky high blood pressure.  When she had a flare we weren't allowed to make any noise but we were horrible kids and didn't understand the severity of it.  Sometimes she got so bad that she had to go to the ER and then I'd feel immense guilt like I did something to make her worse and I would have this fear that she might have a stroke and die and it would be all my fault.  I never want my daughter to think that way, although I need her to understand that when I'm not feeling well I can't take her tantrums or her fighting with her big sister. 

Two months ago I had a major episode of tachycardia after lying down for a nap.  It went on for about 10 minutes and then I got the spins and bad chest pain.  I was literally on the floor and thought I was having a heart attack.  My eldest called 911 and then ran out to meet the ambulance, leaving my younger one terrified on the phone with the operator (my husband was out food shopping).  The ambulance took me and my older child had an asthma attack from the fear.  My youngest was terrified and all the neighbors came running out to watch the ambulance take me away - it was super embarrassing.  I felt so guilty that I put my children through that.  Most of the time the violent episodes happen on my way to work or during the night when I'm sleeping and the kids are already in bed so they hadn't seen me like that.

I never thought about it until she brought it up but I recently realized that my 11 year old has only known a sick mother (I was very ill and lost a ton of weight after she was born - and then was finally diagnosed with Grave's Disease (I couldn't be around her for about a week after having a radiation treatment on my thyroid).  Then I had bouts of tachycardia, then was in the hospital and then on iv antibiotics for sepsis, then there was the summer that the flu went into pneumonia and I was out of work for 2 months, then I hurt my neck and could no longer pick her up or bend down to bathe her, then I had worsening of cardiac symptoms and my second ablation). 

Reading this I realize that I sound a lot sicker than I am.  In between episodes/bouts I look normal and can work.  I get very close to passing out but always get the warnings so I can take action.  I've been lucky to have been able to take my kids to amusement parks, Disney, museums and concerts so they are far from deprived but I do say "I'm not feeling well" ALL the time.  For example, last night I was tired and worn out and my feet and ankles felt the size of an elephant and I needed to rest after dinner and put my feet up but she wanted to go down to the park with her friends and I didn't want her to go unsupervised.  My husband was doing some emergency plumbing due to the sink being clogged and backing up into the dishwasher so he couldn't take her.  She got really angry and started crying because I didn't take her down to the park, which I totally understand.  Then I felt a little guilty.  Sometimes I do feel guilty because I feel like I try to conserve my energy so that I can work and choose not to do certain things on the weekend so I have energy to clean and do the laundry and things that need to be done.  I let the apartment fall into near ruin for a while but all that did was make it so that she couldn't invite any friends over because the place was so bad. 

Since my trips to specialists last year and the meds, I can cook more often than ever before and feel a lot better.  I even started a massive cleaning/purging of junk and clutter in the house but I have to be careful to save my energy because the only thing I can count on with this condition is that there will be ups and downs. 

Wow, I didn't intend to type all this but the words just sort of flowed out.  Feels good to get this all off my chest.

[UniqueNyke]

Hello 👋 so I also have (Pots Syndrome) and i work full time and also in school full time  at night . Last few days I’ve had bad chest pain that leads to my back and left shoulder/Arm, I am not at Urgent care to at least be seen for this, in my humble opinion it’s hard to work with pots . I am a barista at a cafe 😀 I love it but my condition has left me feeling undependable and kind of sad. Not many people understand or can relate . It’s debilitating