Feeling Stuck

[Ashelton80]

Hey guys, I seem to be going through a phase where I feel stuck with my treatments and recovery. I don't seem to have the motivation to try new things like I did for the first 2 years I was sick. At that point I was willing to do/try pretty much anything. At one point I was following a paleo diet, juicing, taking a wheatgrass shot and making a green smoothie and exercising every single day. I got about 70% improvement with that. It felt like a lot of work and I finally got tired of working so hard and still not feeling completely recovered.

I have never tried Florinef and have the prescription sitting on my counter right now. I am terrified to take it because I am afraid it will stimulate my sympathetic nervous system and I avoid anything that I feel like might cause me panicky symptoms. I hate that the fear of having a bad reaction is greater than the fear of staying like I am now. I mean what if it's a great drug for me and I'm missing out?

Any advice or encouragement is appreciated!! Thanks

[roxie]

I hear ya! I really don't like starting new meds either. I most recently faced it with Midodrine, it took me months to try it. I didn't want to go there at all. Then I realized, I had nothing else at the moment to try and I'd feel silly if i let that fear control me. I had to face it and have been on Midodrine for almost two months. In the begining it was hard but as the days went on I was less afraid and things leveled out. I'm starting to see some improvement from being on the midodrine.

You know that if you try florinef you'll know for sure if it helps you. If it doesn't you can stop taking it. If you don't take it you'll always wonder. There's no easy answer bc every med comes with side effects.

I go through periods of feeling stuck, it's so hard bc there's so many things I want to do & dream of doing yet can barely keep up with one of them. It's very disheartening.

[jpjd59]

It's approaching the year anniversary of when my daughter developed POTS and she is feeling stuck also. Everything she has tried to get better has failed and she is skeptical that she will ever get better (even though the doctors have told her that eventualy she will).

Don't give up - something will work (it is just going to take some more time to figure out what that is for you).

[HyperPOTS8]

Florinef has helped me so much and I have very high norepinephrine. I believe it decreases my SNS stimulation by decreasing my hypovolemia. I felt better in less than 24 hrs. I agree with bananas..the only way you will know is to try it!

[puppylove]

Florinef has been somewhat helpful for me too. And I have zero side effects. I so know how you feel though. I have yet to take more than one fourth pill of mestinon because I'm too afraid of the side effects...

[kjmom]

I hear ya! I have mixed feelings about starting a new med because I might have side affects, but some of them work well. I really hope you find the right combination of meds and get better very soon!

Best wishes,

Kayla, 10

[Relax86]

I am also plateaued at about 70% improvement. I'm grateful for that but still wish and hope for more. As I read other members posts it seems that many have more info on their condition...such as what type of POTS, noroepi levels, etc....I don't have those answers about my condition. But I also post most respectfully that it seems that those that do are not doing much better for having more info. I wonder if I should come to an acceptance of this life or push myself to see more specialists and endure more tests. I have not seen nuero, vascular, autoimmune and had a bad endo visit. Also my symptoms are so whacky wouldn't even know what specialty to see first. I live in SJersey and most people in Southern NJ cross the bridge into Philly for medical care. I'm up in the air as to how to handle this plateau. I'm only using hydrocortisone 5MG 3x/day which helps me breath. I gave fludrocortisone a 3 day try..and jumped off that bandwagon pretty quickly. I just don't see enough people posting things like - It took me a while to adjust to _______ (enter drug name) and now my symptoms are gone. Also, my symptoms seem to change weekly from high resting HR to R ear and neck spasm/pain, to internal tremors, to vision and digestion issues. I never have the same week.