Post CK tiredness

[CC]

OK I know I should post on the post treatment section.  But, except for Jamie's one posting, the rest are post-treatment microsurgery ANs.  So I've returned to my tried and true pals in the radiosurgery section.  Today is the three week post CK mark.  Everything's going well except for sleeping patterns and fatigue.  Not sure whether the two are related but after I got back on the red eye from CA I was dragging my feet about Friday and Saturday and sleeping about 12 hours each night.  Then Sunday I just lay like a couch potato until 7pm when I came alive and peppy.  The kind of restless jittery peppy you get after taking the little steroid pills they give you with your CK treatment.  Unfortunately stayed thatw ay until about 3am!  Didn't wake until 1pm Monday and repeated the dragging feet, stay up all night pattern again.  Last night it caught up with me and I crashed at 10pm.  Slept until my spouse dragged me out of bed at 8 this morning.  It didn't seem to be a problem last week.  A week ago I got up at 8 and hiked 13 miles through Yosemite.

I know this fatigue is a 'good' sign as the guys at Stanford gave me the following post treatment tips:
- nausea indicated the brainstem has been 'compromised' (don't you love it when they use this term?) but it will heal and the nausea will pass
- new dizziness (ie dizziness you didn't have before CK) means the cochlear or acoustic nerve has been zapped (my term not theirs)
- headaches can occur (duh! Yes they really said this.  I think they don't really know why)
- tiredness indicates the brain's healthy tissue is healing.

I know I'm lucky because I haven't had any of the first three symptoms - none!  And my hearing's still great although I have blocked sinuses at the moment which means I really do have a blocked ear rather than must feeling like I have one.   I'm normally a 6-8 hour max sleeper and have a huge set of meetings in NYC at the end of next week.  I've sent away for the Vitalzym that Suzeanne recommended, and a couple of books on how to get rid of those free radicals that are no doubt clouding my head.  I hope they work.

So I'm not freaking out of anything.  But someone tell me this is normal and it's going to pass soon.  Please?  Or at least how to get back to my normal hyper self asap. 

CC

[SuzeAN]

Hi CC,

I know I felt tired the first week, but I didn't have unsual sleep patterns like you described.  Are you taking steroids?  My docs at Barrows didn't prescribe any, maybe they have something to with your fatigue.  Try some green tea too.  I hope the vitalzym works for you. I started taking that about a week after my CK treatment, along with green tea (capsule and the drink too) and vitamin C;  I have really felt good.  Maybe the doc or nurse at Stanford could suggest something.  It seems that everyone has different reactions to CK.  cheers, Suze

[jamie]

Hey CC

Fatigue is a symptom that some get and some don't. It should resolve within another month or so. I had mild headaches due to swelling, which is something only some get as well, but about two months after the treatment they vanished. Everybody has different acute reactions to the radiation, but they all usually resolve fairly quickly. Hope you get your energy back soon!

Jamie

[Larry]

Cathy,

Sounds like you are on the road to recovery pretty quickly. I'll be interested in your recovery process as I go for my next MRI in 2 weeks and will then make a decision after seeing the ENT surgeon and then Dr Smee. I'll more than likely go with the radiotherapy but options are open.

Just hang in there and I'm sure you'll be back to normal in no time.


Larry

[CC]

Thanks all

I hadn't thought of good old vit C!  Will start it soon.  Still waiting to the postie to deliver the Vitalzym.  Jamie, I'm glad I didn't get the headaches.  I think I'd rather be tired than achy.  I guess we all have some little post-CK effect to bear - but it's so much better than having to recover from having your head cut open! 

Larry - good luck with your Aussie treatment.  Keep me posted (and I will you). 

CC

[okiesandy]

OK You Guys,

Keep posting here. I am just about tired of posting on the surgery parts of this and another  forum. I got a couple of pretty direct emails from a couple of people that are really opposed to CK. Seems they didn't turn out perfect from the surgery and think I might like to join their little club. Why would I want to have my head hacked open and suffer a weight in my eye? Keep on posting. I can deal with the sleeping and headaches if it will stop the thing from growing.