funnyfrog

Hi - I just wanted to let you all know that I have the same problem - I say something one minute and forget what I said or put something away and can't remember 2 minutes later where I put it, but I can remember things from years ago, sort of like the same way an Altzheimers patient would. I asked my doctor about this and he said it was for a few reasons - one because the blood pools in the lower extremeties from the POTS and not enough is getting back up to the heart and thus the brain, where it should be and this effects cognitive thinking, also a little is from the low blood pressure from POTS being so unstable at times, its hard for the brain to function correctly and also some of the medications have side effects and do strange things - I volunteer at a local hospital on oncology floor and it is a standing joke between myself and my friend that I volunteer with that I should be on the Altzheimers wing instead if there was one because I would fit right in. Of course we are only kidding, but since we are humor volunteers and are supposed to make the patients laugh on our wing, we try to make each other laugh too. The memory loss is so bad sometimes from POTS that I will take my meds and not remember if I took them a few minutes later - I've started taking them in the a.m.when my husband is home before he leaves for work so he can watch when I take them so I can ask him if I took them if I need to. Ah, life with this syndrome. ..Seeing as I am only in my mid 30's, I hope this gets better in time. Have a great night everybody!!!!

Sue - Just wanted you to know I am thinking of you today and said a prayer for you - Hope you are doing a little better than last week. If you are well enough to see this, smile. Things aren't that bad - There are people feeling worse than us - I volunteer once a week on an oncology floor at a local hospital and even though it takes all my strength and sometimes I probably have worse vital signs than the patients, our disease is not terminal and in my case, has taught me to be more compassionate and help those in need, even if I cannot do much, just smiling and saying a quick hello and sitting and holding a persons hand can do wonders for their spirit,as well as for mine. POTS is life changing, in ways it makes your life worse, but in more profound ways, it has made my life better - It has taken me 2 years to reach that conclusion,. I hope your journey with this will be shorter than mine has been. Take care -Be well. Funnyfrog in NJ.

Friday - Hope you feel better soon. Email me whenever you are doing better. Haang in there - there are better days ahead!!!! Funnyfrog

Hi Sue - I just wanted to send you a quick reply that may help ypu. I saw that you also are from the NJ area like I am. I suffered for over a year from 1/2001-5/2002 until I was diagnosed. An elctrophysiologist/cardiologist at Monmouth Cardiology Group of East Brunswick NJ did the tilt table test and together with an endocrinologist, they diagnosed me finally at Rob Wood Johnson Med Center. I'll spare you all the long details of my story, feeding tubes, gi problems,etc,etc,etc, but if you need more info from me let me know. I hope you get help soon so your symtoms can atleast get to a controllable state so you can function a little better. Also, breathing is a problem for me, but I use a ventolin inhaler, only as needed when my breathing gets very bad and that helps me with it. Also, if you do not over exceed your limits, breathing is better. As soon as I feel my breathing getting labored and I start getting even just a little dizzy or tingly or ears ringing or any symptom happens, I sit down wherever I am for a little while until the feeling passes and that seems to work for me. Have a good night funnyfrog in NJ

Hi - I wake up with a headache too, almost daily, no matter how much or little sleep I get and with having POTS and EB virus, I try to sleep atleast 9-10 hours at night and nap about 2 hours sometime during the day. I usually take 1 advil and the headache goes away in about an hour from waking up and does not come back the rest of the day. I asked my doctor about this, but of course, since I am my primary dr's only POTS patient, he does not have an answer for this. I need to ask my neurologist this question the next time I see him - probably though, they will say it must be anxiety - When there is no clear cut answer with POTS, that seems to be the response I hear most often. What about you? Funnyfrog