Specialist appointment!

[katcanny]

Hi all,

I had my 6 weekly specialist appointment and since I’m functioning at a 7 out of 10 according to my specialist (Still can’t drive or do anything without having a helper with me! But I’m a 7 out of 10 apparently!) he wants me to cut down on my medication when this is the best I have been functioning in over a year. Any thoughts on this or people that have done this? I feel like his guinea pig and that he just wants to see what happens. I think I may have found the right med balance o don’t want to go backwards again and lose all the progress I’ve gained. Thoughts?

[Guest KiminOrlando]

Did he say why? 

[MomtoGiuliana]

What is the medication?

[katcanny]

He said that I seem to be functioning at 7/10 that was his only reason. He wants me to start cutting back on both medications, I’m on florinef 2 tablets per day(the last time I tried to cut down from 1 tablet to half a tablet, I ended up in hospital for a week only to be discharged prescribed more! 2 tablets per day which helped a lot!) and propranolol which I’m on 3 times a day which is stopping my adrenaline surges. I am finally functioning enough to work most days I’m on less hours and have a lot of sick days but I’m still getting there on a regular basis. I really don’t want to do this and he didn’t even give me a plan to do this just said try to cut down every second day and see how you go, then a little more, then a little more! Isnt that dangerous especially with a beta blocker? 

[bombsh3ll]

If you feel your current treatment is helpful and needed I would be completely frank with your doctor and let him know your concerns about coming off them. Certainly if something got me up to 7/10 I wouldn't be willing to give it up! I am planning another trial of florinef in the new year, have you had any side effects?

[Guest KiminOrlando]

I would tell him I was not willing to do it, especially during the holidays. Remind him of the hospital trip the last time he tried this and how much that cost. Then tell him you need to work to be able to provide for your family. Being 7/10 is a great start, but not where you need to be to achieve these goals. Let him know you need more from him. Turn the tables. See what happens.

You might end up with a compromise and stay where you are, but maybe he will realize that you are a person and not a science experiment. 

[katcanny]

I’m definitely not going to do anything to my meds over the holiday period. Last Christmas I couldn’t even enjoy it with my family I was so unwell and don’t remember much of it to be honest. I might need to look for another specialist in POTS I really feel like an experiment at times with this one. I need florinef I did experience a very weird sensation the first week taking it I was zoned out and had to go to the toilet all the time but it settled and the only side effect I have had is weight gain but that was when I started a beta blocker aswell. I was on florinef for nearly a year before any other meds and I didn’t have any weight gain with taking it on its own.

[WinterSown]

Ask how soon cutting back on your meds will make you an eight or nine. Get a realistic timeline and if you aren't happy with less drugs get on the phone and tell them. I think its great that you are getting better. Every few weeks my EP cuts one of my drugs in half to make me better and it's been working. My symptoms are pendulous and the doses I needed a year ago are sending me to fogville now, if I had kept with the stronger doses I'd be on the floor. It's not easy to give up something you've become dependent on but getting better as a result of it is the goal. it's a tough to be told to give up a script, but then again it's a sign of getting better.  I wish you well.