Sorry to hear about all the years of "stuff". The doctors think its in our heads but its not, its in our broken down, radiated poisoned bodies.
Here's how I feel: You do your research on whats flaring up..example POTS...then you find one of the best doctors who treat what you think you may have or been diagnosed with. If they are out of state, then you call the American Cancer society 800-amc,2345 and you ask for the number to the Corporate Angel Network and they will fly you for free to that doctor.
Most important...you do not give up and loss your spirit...I'm not saying I'm perfect but when we stress out or feel depressed our bodies give off chemicals that cause us to get sicker...
it becomes a vicious circle of medical issues..something breaks- you get meds, the meds break something else in your body...over and over and over it goes...always sick with something...
Went to an old doctor at Sloan Kettering New York...He was in his 80's and said the follow: Francine, live your life and stop going to the doctors, they will always find something wrong with you... stop take tests....LIVE!!!
As far as my POTS, here is what I do: Original mix was: Midodrine 3 times a day, Toporol (beta blocker) 2 times a day, Zoloft to stay evened out, salt pill to stay hydrated, Abien to sleep. Floricef 3 times a day.
This was too much for me: I did my research; as long as your stay hydrated your symptoms will not be as sever. You must drink 124oz of water a day. Drink Gatorade as soon as you don't get enough water or starting to feel symptoms.
-A few deep breaths three times a day
-tighten your muscles from your butt down to your feet, hold for 5 seconds and release. (this will cause better oxygen and blood flow-when you can or why feeling bad.
-put salt on everything, sea salt. This will keep the fluid in your body naturally that you need.
-take a multi vitamin. Whatever your body doesn't use, it will come out.
-B12 deficient causes a lot of the symptoms, check your b12 (blood-work). Once leveled out, less pain and more energy.
-Vitamin D- same as B12.
Meds taking now by my own only two: Midodrine 2.5mg per day and Toporol 1 time a day.
-I went off all the other meds on my own and I feel so much better, I was in the same position, stayed in bed most of the time miserable, weak and sick.
-start documenting what your doing, what your eating & drinking. You will start to see what causes you to have more symptoms. These are the triggers, avoiding the triggers avoids the episodes. See what works, see what doesn't.
-You are your own "lab rat". This was one year ago ...
TODAY: I work full time, I am on the Chairperson for "relay for Life" and I am starting to exercise lightly.
I have minor symptoms sometimes but I am "my own lab rat" and know what not to do. I live with my condition and LIVE my life again!!! We are never going to be perfect however, we can be the best we can be emotionally and spiritually to keep going!
I am here if you want to chat and work on these things in more detail, e-mail me directly at firstname.lastname@example.org. I'll be happy to help you... Hang in there!! Your a warrior!!!!!