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!

Hello TCP, Thank you for your reply. I hope your MRI goes as well as it possibly can do. I was meant to say that my headaches do not get any better when I lay down - they get much worse when I put any pressure on my head. All the best!

Hello TCP, I am so sorry that you are going though so much! How are you coping with it all? I hope that it gets manageable really soon! Do you have a good support network around you? If you don't mind me asking could you please tell me how the tumour on your pituitary may have died, is it because of the bleed into the tumour? In 2011 I fainted while I was teaching English in South Korea. I was rushed to the hospital and I had an MRI and the specialists said that the scans showed that I had a benign pituitary adenoma (o.6mm). However, when I returned to the UK I had a few MRI scans and the doctors cannot this tumour. Prior to Korea I was experiencing headaches, however because I had not experienced headaches before I assumed everybody's were as severe as mine, I also had stomach pains, dizziness, blurry vision, sweaty hands & feet and stomach pains (I still experience all of this). Although I was diagnosed with POTS in 2013, my doctors and I still believe that my headaches are due to something else, and not POTS, because my symptoms to do get better when I lay down. Wishing you good health!

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.

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