This IS working for my severe fatigue!

May 12, 2009 at 5:36 pm

Hi all,
I haven’t posted for a while, so I thought I would update this as to the results.
I saw the sleep specialist a few months ago. She is a Neurologist specializing in sleep disorders. She knew full well of CIDP, and understood why my regular neuro sent me to her for the severe fatigue.
First, they did Oximetry on my, and showed my O2 sat. down as low as 80, (normal for this is 92 or above). They had blood gases drawn, and again showed my O2 sat at 84. She sent those results over to my regular Pulmonologist, of whom I saw a month ago, and I am now on Oxygen 24/7.

But back to the Sleep Specialist…She wanted to experiment with what might work. First, she had me try Provigil, at varying doses. Didn’t work.
So, amphetimine time–she had me try Ritalin.
I have to tell you, this helps alot. She had me start with 5mg two or three times a day, working upward until I found the dose that might help.
I DID find the right dose: I take 10mg when I first get up, (between 4am-
5am), then again another 10mg between 10am-11am. This gets me through the afternoon without having to go to bed. It was getting bad there for a spell, that I was going to bed/sleep at 1pm, back up 7pm, to sleep again at 11pm, then back up at 5am–sleeping twice daily.
Now, I can make it to 4pm-5pm, eat dinner, then make it to 8pm-9pm.
And if I am going out in the evening like to a restaurant or something, I take a dose of 20mg in the afternoon. She wrote the script that I can take up to 40mg per day.
Since I am in a slow progression of getting worse with the CIDP, who cares if I get addicted to this–One of my doctors pushed me to get my Advance Directive done two months ago, as he feels something is going to happen within this coming year–yeah, I know, a feeding tube and trach/respirator is not too far off in my future, as explained by my doctors.

So, for others experiencing SEVERE fatigue from the CIDP, this might help some of you. Sometimes it catches up with me, and I have to take a whole day out for mostly bedrest, even as I take the Ritalin. But most days of the week, this helps me greatly.