My doctor told me I was too old to be diagnosed with POTS and now I'm in a mess and need your help!
My lovely cardiologist told me I was too old to be diagnosed with POTS at the grand old age of 42. He told me it was a 'young ladies' illness and that women over the 40 don't get it so I couldn't have it. Although I had all the symptoms he diagnosed me with OH instead and told me to wear compression socks and add salt to my water. Since then my health overall has gotten worse, I also have progressive MS, ME, Endo, and lots of other things (like many of you do). But my heart rate is now rising from around 60 to over 125 every time I stand up and take the smallest of steps and I just don't know what to do?? I feel horrendous, my body is already weak because I've been throwing up a lot lately (due to other illnesses) and I'm struggling to get much food in. Can anyone give me advice on what steps to take next please? Is there anything I can do at home or do I need to asky GP to refer me to a specialist? I should still be on the cardiologists list so getting an appointment back there might be an option. I just need some help and you guys are the experts! Thanks so much.
*UPDATE*
I don't know how else to answer the questions asked so I'm hoping this works and you'll see it. - My blood pressure drops any time, I can be stood up, sat down, lay down etc. I'll normally get a warning wave (the only way to describe it, sorry). Sometimes it just hits like a brick wall though! I just feel horrifically sick, dizzy, my sight can disappear, sound can go or it can range from double vision to full on fainting. My blood pressure drops to, for eg, 82/47 (today's reading), it does improve if I put my feet right up and just sit still for a bit. I do tend to get it happening more when I am more upright than flat but it can happen literally anytime. The doctor diagnosed me with OH because I had to give him 2 weeks of monitored readings and because my blood pressure did change slightly from lying to standing when I was in the appointment. But considering everything I was telling him about the HR changes it was just a bit confusing. At that time it wasn't as bad as it is today, but it went up from a resting rate of mid 50s to around mid 90s on standing (he didn't get me to try and walk as I was in my wheelchair that day so we just did sit/stand). He told me that because it didn't go above 100 was another reason it couldn't be POTS. It's obviously gotten worse since.
I have also been diagnosed with hEDS, dysautonomia, ME, endometriosis, progressive MS, osteoarthritis and my GP thinks MCAS because of all the random things I'm allergic to. But she has no idea where to start with diagnosis because her protocol said I had to go for a blood test while I am in the middle of a reaction. Obviously, she didn't want me to do this as it meant exposing me to something I was allergic to first. It all seems a bit backwards to me, surely there has to be a better way or a specialist I can be referred to? I know they are trying to save money and do more things in primary care but it doesn't always work.