NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR › Reply To: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR
Cardionet was the company who issued my Holter Moniter. I received my detailed results directly from them. I faxed a request/release and they Fed Ex my entire ‘file’ directly to my home. I’ve just filed the results since I don’t know how to read them. Brachycardia, tachycardia, arrythmia, etc – it’s all there. My cardiologist said my heart was stable though. After a terrible echo, I wondered about this. I thought maybe they thought I was active like a normal person which caused the fluctuations. I am probably 10% of what I was, and at random (meaning that I can’t even effectively utilize the 10% that’s left) so I never know when I might have the clarity, energy, willing body to perform my will. It’s never nearly up to par but when I am not feeling like death warmed over, I practically ‘short circuit’ with my brain going nuts with the buzzillion things that I am unable to do – every item jockeying for position so that it might be able to finally be worked on. Sometimes I think I will have a good day and the ‘short circuit’ kicks in. I try to remain calm and conserve the energy of the good day that I anticipate. It always dissapates after a few hours and I’ve never actually gotten the day that I’d hoped for or become so excited about. Anyway, I digress. I’m just very stressed wishing things that I desperately wanted/needed to do were done – very stressed about it.
I’m going to be stumbling and staggering in an anxious fog to perform this ‘exciting’ task. I think my adult son will have to help me to figure it out.
Anyway, I’ve sorta forgotten where I was going but a main point was to suggest you contact the company who provided the Holter Monitor. My monitor was mailed to my home directly by the company. I’m not sure if that made me a client of theirs or if I am just legally entitled to receive my records upon request with proper paperwork. It was really easy though and I never thought too much about it. Figured my doctor might lose it – and I did wait 3 hours for them to find what I already had in my notebook. Ugh!
God bless and thank you for this post. I hope I will be able to find help within it.
BTW, anyone know of testing for dysautonomia. I’m pretty sure I’ll get a tilt table test but I am not convinced that my POTS reactions are completely regular – they may be – they may not. I just don’t know. Any suggestions? Or do you think I can do something like mentioned and take it to my cardiologist. My cardiologist should be an excellent doctor. I’m not sure he does much with EDS but he is so well educated. If I could figure out what to tell him or what to ask for, I do think he would help me.
I guess, for starters, I could ask him about Diamox?