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I have POTS or Postural tachycardia Syndrome that is associated

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with CFS.


I work fulltime in a busy office which is hard most days as I have blurred vision and spaced out feelings most of the day, where as when i get home i feel better coz im not working and just relaxing doing dinner or watching tv etc. I have read through pages on google and its good to know other ppl have this as in NZ I cant find anyone that has it here but have found heaps of ppl on facebook and just random websites as I have had to google all my info to help me. I found having water or diet sports drinks are great as well as salt with your foods. I have also found that not eating in the morning helps alot with symptoms at work so I only have lunch at work and food when I get home either a snack and something and then dinner. I have a Wii fit so try and do that so I can rest at home in between exercises. If only our streets all had parkbenches every so often I would get out more lol. Have you had any experiences like these? I also take rescue remedy at night as well to help me sleep and also during the day to keep me going. I was told by my cardiologists to do any exercises I wanted just sit down or stop when I needed to.Im not bedridden thankfully maybe this is why hes trying to keep me doing as much as I can.

Its great being able to talk to ppl by email about POTS coz no one really knows much about it
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replied July 6th, 2011
Im 33 years old and just dx w/ POTS. I have never had any symptoms or major illnesses. One day at work (june 7 th) started to feel dizzy, got real hot, chest palpitating, fingers and hand got numb. I thought i was having a heart attack.Then i passed out for only a min though. I work in a hospital so they took me to ER. They sent me home said i was fine. Next day ended up in ER again, and again they sent me home i was fine. For three days i laid and did nothing. I then decided im living my life. Went shopping with my husband, not a good idea. I almost passed out again, I had to lay on the ground. Later that night i must have pushed myself. I thought i was gonna dye. My heart was pounding.

I called 911, they admitted. I stayed 3 days. Failed tilt table test in 2 mins. They put me on Florinef for a week, no success. Atenolol (beta blocker) for two weeks, kinda scary b/c my bp is low to begin w/ 95/65. It get down to 85/58at times. It did lower my heart rate from 115 standing to 90. However, it did not solve my problem. I still get the chest and throat tightness, dizzy and lightheadedness, brain fog and confusion all w/ standing only. So today they took me off atenolol and put me on nadolol. Im fine laying and ok for the most part sitting. I just cant have my legs hanging. No symptoms until my legs are in a standing position. Does it take awhile for the beta blockers to work? Or maybe i need to try Midodrine (a vasoconstrictor) blood could be pooling in my legs. Did you try Midorine before. I feel like im not getting blood to my head and I am so completely confused and sad. 4 weeks is a long time for me to sit and do nothing. I went from full time job, part time school, being a mom and wife--------to sitting and doing nothing. Where is the cure, research, help? Sorry had to vent.
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replied July 6th, 2011
Hey
Hey no probs, do you have facebook at all? If not join up and see the links I have attached.... I have a few forums I discuss with ppl on there. Im on no meds at all !! going back to hospital next month for a drug treatment
Which area are you in....Im in new zealand and no one here has it that I can find lol

Facebook....look up:
POTSRecovery.com and we are all in there =) let me know how it goes
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