ana_22

It helped seeing an autonomic specialist who was able to convince me that there is NO perminent damage to my nerves, including autonomic nerves. He spent a long time talking to me, reassuring me by various evidence that in fact there is no perminent damage. He tested both sympathetic and parasympathetic nerve groups and was able to get normal responses, if a bit fast or a bit slow, still normal. I CAN function normally, my nerves ARE there after all, I just might need to change a few things or avoid overstressing my system. great to hear this is helping you! i also have the dizziness and tachy but never faint. im going to try and slow down my breathing. just a few questions for you. did you get visible blood pooling in feet and legs? and how did they test the autonomic nerves, para and sympathetic? thanks so much!

silly me went to visit my parent and left my bag of meds on top of the central heater. i came back to my room hours later and noticed this, i grabbed my bottle of florinef and it was very very hot!!!! the little pills must have been cooking for hours! anyway im going through a bad POTS phase and im wondering whether the heat may have damaged the florinef effectivness, as on the bottle it says to store in a cool place. does anyone know whether this may have happened? thanks

my stomach itches after eating sometimes

on the topic of blood draws.....how long does it take for our bodies to replace the blood we have lost?

thanks for clearing that up for me firewatcher! do you know whether people with normal high to high cortisol in the afternoon can have addisons? my understanding is that if you have addisons you dont produce any cortisol, but my endo still wants me to have this test. i guess im really just worried about coming off the florinef and losing the 5% improvment it has maybe given me.

yeah i would def call it flank pain. nothing came up on the scans that i have had. mine is worse after i have been standing for some time. and when its bad i often get sweaty. not sure why.

thanks for that firewatcher. i was thinking why cant they just give us suspect addisonians that hydrocortisone (is that it?) and see if it improves symptoms? is it dangerous? im about to book my stim test.

i take avanza nightly, nausea went away considerably after taking this for a few weeks.

lower back pain was one of my first symptoms. i had it constant for about a month, i thought it was a posture thing as i was spending alot of time on my computer that was set up on the coffee table. just as the back pain resolved the dysautonomia set in. the back pain still flares every now and then especially if i have been standing up for a few minutes, but its not as bad as the start.

Im going to have the stim test soon. my endo wants me off Florinef for 1 week before the test. At first he said 2 weeks than he changed his mind and said a week. for those of you who have had the test how long were you off meds for before it? also i have had my morning cortisol measured a few times and it has been within range, could it still be addisons? i mentioned this to my endo and he said yes. also for the females, i read somewhere that it is best to do the test first week of your cycle, i have tried to find more info on this but cant. does anyone know anything more about menses cycle effecting results? thanks

Angela, i will pray for your son & you. x

im having one soon, ive started seeing an endo. my own gp has tested morning cortisol levels and they were fine. my gp has also tested acht (i think thats it) levels, they were also good. i told my endo this and he still wants to do the stim test, is this normal? its just that i have to stop florinef for 2 weeks prior to testing & florinef is really helping me out right now!

hi! great dr it seems just a question, did you have your blood drawn during the tilt? im just wondering about my owns tilt, which was just tilting me with a blood pressure cuff and those heart sticky things stuck on my chest. i dont think they would have been able to get that info from my tilt!

welcome! you have a gift with words! made me laugh!

I know this condition truly *****! i hate that i have no control over my body.....but when i think about it i guess thats what its like with other diseases and illnesses. i just hate that this robs me of time with my family and friends....or if i do fumble up the energy to see then i usually feel crap anyway. What i do to curb depression is close my eyes and think of what i would be doing if i wasnt ill and what i will do when im better ( hope ).

yes definitely could be the florinef. it took me at least 4 weeks for my body to get adjusted to it. im not sure how much its working but im going to give it at least 6 months. ive heard of some ppl it taking this long to have its full effect.

thanks julie! im going to start the antibiotics soon, just a quick question.....how does your son know he has SIBO...like what are his symptoms when it reoccurs? im having trouble figuring out what may be SIBO and what is crap autonomic system! i dont want to get too excited and think this may eradicate some of my GI problems!

yay!!! good news

From what i understand - most ppl with CFS have POTS BUT having POTS does not mean you have CFS.

i did the breathe tests a few weeks ago and saw my DR today and she has confirmed this, i start the antibiotics soon. has anyone been diagnosed with this? what is your experience with the treatment? did it work or did SIBO come back? ive heard it can be hard to eradicate!

when is you appt with the specialist?

whats the article called and who are the authors? nothing is coming up on that link for me!

yeah im sure increased salt is helpful without florinef. im wondering the reverse.....is florinef helpful without increased salt? salt tabs give me headaches

i have the same burping problem!!! when i stand i start burping, when i eat i start burping! do you have alot of nausea? is pots very disabling for you?

thats for your input guys, it gives me something to think about before seeing the neuro so i can get some questions ready. i dont think i have meneires as i dont really get ringing or deafness. i have alot of gi symptoms that started the same time, so im guesssing maybe a virus started all this? because yeah sure vestibular disorder can cause nausea. but how can it cause diarrhea, back pain etc? my appt with gi doc went well. this is a new dr, as my old one left the practice. he was really good and scheduled gastric emptying study.