As promised (but a little late) an update on how my visit went with my consultant.
As always I had got myself into a state about seeing the consultant. I no longer trust Dr's particularly after my experience with my ex neurologist and his team (or band of idiots as I like to refer to them now). All too often in the past one thing was said in the consulting room and something totally different was written in my notes. Culminating in the team believing I was mentally ill and making up this whole illness for attention. So understandably I get extremely stressed going anywhere near the hospital.
I was met at the clinic by the care assistant Sue who has a great memory for faces. She knows I won't play the game so she always says "hello Mrs...... and we wont be weighing you today". I point blank refuse to be weighed, I'm overweight, I know and they know I am and I refuse to have the information written down. I weigh myself regularly and know how bad it is! I am always polite in my refusal to be weighed. My other reason not to be weighed is there is no medical need for it. None of the drugs I am on have a dosage that needs to be applied based on my weight, if it did I would reluctantly be weighed but I would turn up for that appointment in a bathing suit to make the weigh in less painful! Plus they would only be allowed to write it down and not say it out loud so all the waiting room could hear.
The appointment was with my consultants registrar, my consultant was around and was briefing the reg on what the plan was now. So I am on a drug called midodrine which is a vasoconstrictor. It isn't actually licensed in the UK so it can only be issued by a consultant and collected from the hospital pharmacy - which is a bit of a pain as we are around 20-30mins away from the hospital, sometimes longer depending on the traffic.
Initially at the hospital I was told to take 10mg once daily for two weeks and then go to 10mg twice daily and they would see me at the end of that week. However later that day the registrar rang me at home as they had been discussing my case and researching the medication on the Internet as I was the first patient either of them have put on midodrine. They changed the plan to 2.5mg twice a day for two weeks and then 5mg twice a day for two weeks.
I was actually really pleased they rang as by then I had already taken my first dose of 10mg when I had got back from the hospital and the side effects were weird. I had seen on other forums people had odd reactions with midodrine. I had piloerection - basically every hair on my body stood on end and I could feel every hair follicle on my scalp. I got very cold and couldn't warm up. It wasn't a pleasant experience, you may think that doesn't sound too bad and to be honest it doesn't. The only way I can describe the feeling is that its like someone is walking back and forth over your grave! You know that weird feeling you sometimes get and it makes you shiver. Well I had that for four hours constantly. My scalp was the craziest as the hair standing on end (obviously it didn't literally, you could just feel the follicle) happened in patches and moved around my head. It was so distracting I could barely maintain a conversation!
On 2.5mg I get cold and I have a little tingling in my scalp but its nothing compared to the 10mg experience!
Ive also had the dentist this week and briefed my dentist on the fact I have EDS and Pots. She was very good and knew all about EDS but didn't know about Pots so she asked a few questions to get her head around it. She also took x-rays of my jaw and teeth to check my bone density and said it was very good. In fact it was the best dentist visit Ive had in years. Hardly any tartar build up and no gum disease which is excellent for an EDS patient as we can be prone to gum disease.
So its been a busy week and I am pretty tired. So I am going to have a rest now! Thanks for visiting my blog xxx