Roxy

I have what sounds like something similar, we finally figured out that I am allergic/sensitive to the material or the gases given off of a lot of new materials especially if they are synthetic. Hope you figure out what is happening/causing this issue.

It was a long hard battle that took over 7 years but finally I have it. Yes I am happy but equally sad that I am now officially disabled. I had the help of wonderful doctors and my lawyers, I only hope that as more and more of us get our benefits ( hoping less and less of us will need them as they find out more about dysautonomia) that it will be easier for others. I am glad for the ones who have a shorter battle than I did. The comments I heard most were you are to young, your husband makes good money, you are not really sick get a job, and you don’t need this let sick and old people get theses benefits. Crazy that was from people working for social security. I would love to be able to work and feel productive instead of basically living in a hospital or feeling home bound like I do. Sorry everyone I needed to vent and say yes I finally made it, one less stress off my list. Good luck to anyone going through this system.

I get fluids before surgery and they use different types on me depending how deeply and how long I am under sedation/anesthesia. I know they use propofol for lighter sedation on me not sure what the others are.

Google pots blogs and ports/IV therapy you will find quite a few people that have had ports put in and IV saline used. You might be able to use some of the info from the blogs to help your case with your doctors. Good luck

They have swimsuits similar to wet suits that give some compression on the internet. I tried swimming but because of my issues I must have someone with me because I may pass out, so not an ideal option. Glad that you found something that works for you, it may be an option for others as we know what works for one doesn’t always work for another.

I set myself reminders or a timer to drink, eat and take a break. I get going and forget, then pay for it over the next few days after over doing it.

Welcome everyone! This is an awesome place to get information and support, glad you found us.

I have the same issue so they use the manual one on me, I also have a pretty big difference between my left and right arm.

I have had holter monitors more times than I can count, about 2 years ago they decided to put a chest port in for fluids and an implanted loop recorder (heart monitor) so that they had an accurate heart rate 24/7 really helps with my meds that control the tachycardia. Sometimes depending what is going on my heart rate gets to low bradycardia...loop recorder is awesome and doctors get to see what is happening without the bulky holter monitor. Helps with quality of life.

I see a gyno-urologist because Pots and NCS have caused my bladder to not function properly, I started out just like you described. I agree that you should rule out a UTI or IC. If those are ruled out I would suggest a gyno-urologist to do additional testing. Good luck

My insurance got me a special light for my very low vitamin d, I use it 4-6 hours a day and take vitamin d supplements. I have osteopenia and will be getting another bone scan in a few months. Hopefully the extra vitamin d and light have helped.

I also use the new iwatch to track my heart with the activity app

Highest so far is 212, average high is 180’s. I have a implanted loop recorder that tracks my heart rate/rhythm.

I get 1 1/2-2 bags of fluid 2 times a week it has been a life saver, I’m not saying all symptoms go away but I don’t feel like I am a dried up raisin ready to kiss the floor.

I use banana bag, normalyte, liquid IV, nuun, gatorade...water ever works at the time.

Not to be a downer, but I am on year 6 1/2 and at the second hearing with a judge for social security disability. I have very good lawyers and wonderful doctors helping, but because dysautonomia is not up front and in your face in the book social security uses it can take a while. It also depends on which state you are applying from some are quick (shorter waiting periods for answers) and who is looking at your paperwork it is arbitrary the answer you get from person to person. It is kind of like the same process and issues faced going through the VA system. Good luck

I have my doctor write a note stating that food and drink I bring is medically necessary just like my medical equipment is. TSA now has a department that helps get you through security easier if you have medical issues/conditions.

Some people have issues with the altitude changes, and getting/having symptoms be prepared just in case.

Yes have had this issue for years, still waiting on test results

Everyone is different I drink coconut water, banana bag, liquid IV, water, normalyte, other electrolyte drinks and use salt tablets daily. I have issues keeping my electrolytes in a near normal level, they tend to stay very low. Start slow and see how you feel and ask your doctor for suggestions on what may work for you.

Yes, horrible bruises that take forever to heal. I sometimes look like I have gone 5 rounds with a prize fighter, I fall and faint a lot. I have bruised easily all my life, but the slow healing only occurred a few months before I started having the first of the POTS and NCS symptoms. I would make sure to talk with your doctor about this because we all have different reasons for what is happening to us.

I have a permanent weight limit of nothing over 10 pounds because it causes issues with my pots and ncs, the best person to ask would be you doctors. They placement of my port has been the best thing I have had done for my pots and ncs, just make sure whoever is accessing your port follows strict cleansing/infection prevention protocols.

Here is my two cents worth, be careful about letting them know to much information on your diagnosis, especially if you pass out/faint or come close to it. My reason in saying this is many companies use the we can't be held responsible for possible injuries, it is more liability than they can or are willing to assume. The company may have an insurance carrier who refuses to have you as an employee due to liability. I am saying this because it happened to me and many others I know of. Good luck

It impacts me the same way flying does. When I see the weather reports stating pressure is changing I plan for crappy days and try to hunker down and chill out as much as possible

When I was going to college I had an issue similar to this at the library and computer lab. I had a wonderful professor who told me to go to the disability assistance office to see what could be done to help me. In the United States we have the ADA laws so the university had to make accommodations so I could go to classes and work on campus. I worked in the library and computer lab. Does the U.K. Have similar laws?