Keeping the BP up is proving difficult!

[pamk5]

I went to my primary care yesterday about the whole orthostatic tachycardia, hypotension thing since the NL said to drink gatorade and see me in a month.  They did orthostatic vitals again and my BP dropped so much when I stood up it didnt register??? If that makes sense.  This is really making me feel horrible, so fatigued and dizzy, like I cant put one foot in front of the other one. Close to fainting so many times a day, I cant count them.  The pcp put me on fludrocortisone to help retain fluid/sodium and hopefully keep the BP up.  Will know in a few days if it works.  So it may not be POTS afterall, he didnt think it was necessary to do a tilt table tests since we know my nervous system is compromised from the Chiari.  The NS's PA seems to think I am depressed and should talk with someone about the limitations that this placing on my life, and I need to rest!  HEELLLLOOO!! I just want to be fixed!!

Damn right I am upset about how sick I am, I am more upset about doctors minimizing the symptoms.  I guess I need to go ahead and faint and break something to get their attention.  ***** to have to sit down really quick so you dont pass out! I know I am ranting.  Thank God for my PCP!! The only doctor I have who even half way gets it and listens.  I hate this disease and that it is stealing my life! I cant wait to see Dr Rosner maybe soon I will have some sanity and get as well as I can.

[pamk5]

Good question! I think alot of them spent all those years studying just so they could blow patients off and not listen.  I am not sure if it is ego or what that prevents them from saying "I just dont know", let me find someone for you who does.  I would respect that so much more than "you must be depressed".  I cant find anywhere that depression makes your BP drop or your heart race when you stand!

I hopefully am going to see Rosner week after next! Do you think he can refer for POTS, or do I need to start looking on my own?  

[selmaS]

Hi...so sorry that this has not gotten ne better.....I know there r drs out there that specialize in POTS if in fact u have it.....but, what an insensitive thing to say...ur depressed????

OMG...who wouldn't be as a result of the condition...and I do not mean the fact we have pain, as that is a given we will be depressed as a result of that, but bcuz of the brain stem compression....duh..what is wrong with the medical profession????

"selma"