Absolutely. Ever since I started having PTC symptoms, I have been chronically fatigued. I think the constant pressure just drains the body of energy. It's exhausting to have your brain and spinal cord squeezed all the time. I'm so happy to hear that you are feeling well and your energy is back.

Love ya,

MM3

I agree....I feel so tired all the time. It's all I can do some days just to get my normal routine done...
Glad you are feeling better....hope it lasts! Good luck!

YES. I have been having less daily headaches lately, but I think my pressure is still high judging by the headaches I do get and my last LP reading. But, even on days where I am pain free I am SO tired all the time. It's really draining and makes it hard to function.

thank you my dear Sisters, I thought I was losing my mind since I couldn't understand why I was so tired, I even got blood work done but it showed my hematocrit was fine! I had to have the shunt adjusted to the other level...my NS I'm just on that fine line between the two numbers of the shunt. I have an appt. at the end of Oct. with my NO to see if I will need to get the optic nerve fenestration. I'm trying to lose weight but oy vey it's hard. I lost 3 pounds in the last couple of weeks but today gained it all back from edema, so trying not to let it get me down (ever since my kidney transplant, if I eat a little to much sodium I swell up, I had some soup that was a salty).

MM3 you are so thin, how do you do it?

Oh...no. I'm not thin. A bit on the chunky side actually. Still trying to get back down to the weight I started at before the docs gave me steroids. I've lost 15 pounds, but still working at it. If you go to my Facebook page you'll see my transformation over the years. The worst was in February of this year just prior to my diagnosis. We went on a cruise and my pressures were off the chart. You can see how terribly swollen I was during the trip. I'm sure the tropical breezes, plane flight and ocean waves didn't help any. The swelling has gone down since, but still working on the weight. I'm not thin by any means.

The past couple of days have been really rough. My pressures are up again. I have head pain/pressure, shoulder and neck pain, and lower back pain/pressure with nausea. Today I slept all day. I have no pain meds. BLAH! I'm not really all that tough....just trying to be normal in an abnormal body.

MM3

oh no you are thin, your face and neck are so slender (from you picture) I wish mine was like that! (sorry, I don't know your facebook name).
that sucks not having any pain meds, it must be awful, I hope you can get some on Monday from you Dr. I swear back/neck pain is so bad and on top of the headaches, oh my, you cont. amaze me by all that you do.

MM3 and Jazzy,

I don't know that I recognize the fatigue but I am amazed how much neck and back pain I have felt lately. I remember the last time I had the VP shunt it went away instantly and I am so looking forward to that.

Do you have trouble sleeping or sleep less soundly? If so could that be part of the fatigue issue? I have terrible problems sleeping these days. I use to sleep thru the night , completely with never waking up, but now I wake evey 30 minutes or so from the pain and feel tired all day because of it. Not sure if that is the same a fatigue but it still sucks.

TJ