Hello to all, it has been a while since I have been on the site so I was just checking in to see how everyone else was doing and to post how I have been doing. On my last post I posted that I was going to have the tilt table test done, that results of that was negative because I did not pass out during the test but my heart rate became slightly elevated and my blood pressure dropped slightly....go figure! I don't know anything about POTS so I took the cardiologist for his word and so he said it is something called vasovagal syncope. Other than that I feel pretty great, just some minor pain every now and then in my neck, shoulder and arms, sometimes my joints. I did want to know if anyone else experience EXTREME fatigue. I have absolutely no energy and there are days when I feel like I just can not go, move, nothing and honestly if I did not have to go to work I would not leave my room at all. I was at one point having to take B12 shots every 4 to 6 weeks and they were working for about the first 2 weeks and then I would crash again but now that my B12 levels are back to normal I am no longer having to take the shots. I am just happy that I no longer have the extreme pain that I was in anymore, I no longer have the headaches from hell and that I am still able to work even if I don't have the energy. I think that I can deal with all the minor issues that I have going on and with all that I have had to endure I will and can conquer anything that Chiari sends my way...I will be ready because I remain determined to not let Chiari defeat me.
Thank you so much Ms. Mandy, I am not currently on a CPAP machine and I just recently done a sleep study which the doctor said was normal but I am up at all hours of the night. I can sleep for about 2 hours and then I am back up, fall asleep back up and that is an all night process until I have to get up for work at 4:30 am. I do fine throughout the morning until around 2:00 pm and then its like my body begins to shut down and I have to push myself through the rest of the day so by the time I get home at 5:30 I feel like I have been in a wrestling match all day, by 7:30 pm I am sleep and the up and down process starts all over again. Will the Beta Blockers work.
Mandy said:
So glad to hear you are doing well! Fatigue seems to be a common complaint after surgery, and the length of time is varying as to when that goes away afterwards. Are you on a CPAP, or have you had a sleep study already? For some, sleep apnea goes away with surgeries. Also, Dr. Pocinki in Washington DC has said POTS can cause sleep disturbances, which could also be contributing to your fatigue. Here's his video: http://csfinfo.org/research/csf-funded-research/csf-ehlers-danlos-s.... He uses beta blockers for his patients, and not only are they effective for the POTS, they stop the adrenaline spikes at night, and leads to better sleep. Beta blockers can have side effects, but for many people, beta blockers alleviate their symptoms.
Best wishes :)
Mandy