Fatigue

[Palace]

Good Morning,


I can't blame my fatigue on treatment because, I haven't had any yet.  I have extreme fatigue at about four or five in the afternoon.  By six in the evening, I can't stand up or do another thing but.....get ready to lay down.  I used to have endless energy.  True, I have busy days here but, this doesn't seem normal.  True again, I have been up since midnight last night with a headache, once again.  I had two good nights the two nights before, this one.  Can you all as a group tell me how this works if it is indeed from the AN?  I'm not that stressed anymore because, I've done all my homework.....reading AN material, gone to all the doctors, had all the tests and made my final decision on the path I plan to travel with this problem, so far.  True, the various pain is stressful but, I don't feel that stressed, like before.  Yes, I'm nervous with the CK date soon.  (and my allergy problems to steroids and other things so, I don't know what will happen)  One doctor on the Cyberknife forum recommended that Decadron might be an option for me after CK.  I'm feeling as comfortable as I can at this point.  So, is the fatigue from the big AN and if so, how does that cause fatigue?



Thank you in advance,



Palace

[Joef]

My personal theory is as your balance is lost or confused .. you body expends a LOT more energy to maintain balance .. your simply doing more work to stand up than you did years ago ...

[Palace]

Joef,


That makes sense to me.  I just couldn't understand if the brain stem was being pushed on that could cause fatigue or something like that.  I was thinking that the body fights pain all day long and by the end of the day, a person is exhausted.  Before, I thought it was stress from the "frightening" news and decisions to make.



Thank you for the help,



Palace

[tony]

Yes - the balance issue is bang on - basically a much larger part of the brains energy
and concentration is being used for much more of the time
- used on balance/ focus / attention - so you dont fall over
- you are unaware of the extra "run" time - until you tire out
You may find a simple 10 min cat-nap will help reset the system
best regards
tony

[nancyann]

Palace- I'm always fatigued.  My balance therapist explained it like:  imagine if you don't know how to drive a stick shift & you have to - the amount of energy it would take out of you, that's like what it is with the balance issue.  It's so hard just walking, climbing stairs, etc.  Joef is right on with his reply.  Nancy

[Palace]

Tony,


Thank you so much.  I feel like I have done my data work but, this has perplexed me with the fatigue situation.  Thank you for your time to tell me what you think.  I'm gathering the last of my pre-CK information and preparing for my life after.  Then I will wonder if vitamins would help at all with the fatigue.

Tony, thank you for your time.



Regards,



Palace

[Palace]

Nancyann,


That is interesting about the balance issue and what you learned.  So, is there anything we can do to help fatigue?  I'm rather young to end my day at 4:00 PM or 5:00 PM.  I have found myself in bed for the night at 6:00 PM, or 7:00 PM, or 8:00 PM, lately.  (sometimes I last on the computer sitting until about 8:30 PM if I had a good restful night and slept until a few hours before, dawn)  That is a good night.  The headaches and pain get me awake, etc.  (then the night is over.......say, midnight or so, like last night)  I'm exhausted by early afternoon every single day since, last summer when all this strongly began.  Sometimes people want me to do something in the evening and I can't go.  (like music, interesting lecture, poetry reading, book signings by an author, going to a special supper, etc.)  My evening life is gone now.  Is there anyway to recover that?  (vitamins?)  I quit all drugs except the Imitrex for migraines and the Valium for sleeping, right now.  (quit Fosomax since CK is near.......taking no chances)



Thank you all,



Palace



Thank you anyone with ideas.....



Palace

[nancyann]

Hi Palace:  I wish I knew what to do about it  - I'm getting quite depressed from it all.  I had an ear  ache & headache last night, was soooo tired from work, that I called in today, feel really bad about it.  Went back to sleep and the phone woke me at around 9am.   Still feeling so tired, & this is all the time.   I'm not even cleaning around the place here & I really should.  No energy...   my balance therapist says it will get better - almost 5 months since my surgery, the facial paralysis, now gum problems, still with constant tinnitus, my head always feels stuffed.  Geez louise, maybe someone out there can help.   I don't exercise anymore, nothing,  I go to work, come home (at least now I have this forum to help with the issues).    I need a good laugh, & maybe a kick in the butt!!!    Is there a miracle pill to take?  Wonder if speed would help! lol
Nancy

[Obita]

Hi Palace:

I am a few years post op and I do not get fatigued unless I don't get a good nights sleep.  I guess my brain is used to the way I am now, minus one vestibular nerve.  What does happen to me now is if I relax and lay on the couch after work to read the mail/paper....I am out like a light.  Not simply resting as before, but OUT.  I fall asleep hard and fast.  When I wake up a half an hour later or so, I feel like I slept all night.  The brain is re-charged and I feel great.  

Kathy

[Palace]

Obita,


I can't even remember when I fell asleep without assistance from a pill.  I think there was one period in my life *(other than a young kid) when I had a very happy time in my life and I was able to sleep.  (that was for maybe say, a half a year or so)  I can't imagine dropping-out, like you describe for a nap.  Anyway, it is interesting to hear how it goes from this point on, for different people and circumstances from the same AN situation.  *(but, larger or smaller and some GK, CK or traditional surgery)

I suppose it is all a combination of the pain, the trying to balance with only the help of one side on the brain as you people mentioned, focus and all, concentration to stand up, climb stairs, go down stairs, etc.

Thank you for the input.



Regards,



Palace

[Palace]

Nancyann,


A few months ago, I got this pill called, "Meta-boost" and thought I was getting older and maybe tired.  I had to hike my young dogs up the mountain.  I DRAGGED myself up there with leg pain and exhaustion but, made it.  If I took that hike at nine in the morning, it finished me off for the day and the hike wasn't that far but, rather steep.

Now, I will have to seek a permanent answer as, I missed an art opening the other night.  I no-way could stand up to be there.  I had to go to bed, instead.  Can you imagine that?  Yes, sadly you all can.  So, what to do about this will be my next situation after CK.  *(unless there is no hope for night energy and I must only have "day-play." (and day work and that is it........no more things at night at all)  I used to do laundry, dishes, etc., at night when I put my wild dogs to sleep.  They don't understand an Acoustic Neuroma energy level.  They are ready to play, hunt, seek trouble, seek new things, explore, have a life, eat, be groomed, have walks, hikes.  What to do now?

Do vitamins help at all or what?



Palace

[Battyp]

Palace I fought fatigue horribly before I was diagnosed.  I also had extremem balance issues going on and didn't realize it until right before treatment.  I'm still having fatigue issues which has perplexed my doctors and was told from a new one yesterday that I had add before surgery which I could handle but since surgery and w/ the vesibular compromised I can not handle the add which is causing me to be exhausted all the time.  I have started taking complext b vitamins which have helped some but...the new doc wants to prescribe new meds that will help get my brain stabilized. 

Have you tried laying down for about 30 mins to an hour in the afternoon to help recalibrate your balance?  I know for me when I get real tired if I can lay down for about 45 mins I can get up and function.  I have to set an alarm or timer or make sure someone wakes me or I'll just keep sleeping.  takes me a minute to wake up and get going again but does allow me to go a little further than I did. 

Hopefully after treatment you're fatigue will diminish as your an shrinks!  If you're allergice to steriods then why are they giving you decadron?  It's a steriod too.

M

[Palace]

Dear BP,


I was told by the radiation doctor not to go back on herbals, etc., until six months after CK.

Your story is really interesting and informative for me.  Yes, it should help me.  I will try the laying down but, I have an unbelievable schedule here to keep this place going.  We may have to sell it and get a smaller place to take care of.  I will deal with that later on.  The rest in the afternoon sounds wonderful and I will give that a try no matter how much work falls behind.  The B vits sound good for me say, later on.

Yes, Decadron is also a steroid in a different form.  It is thought that maybe I was allergic to the form of Pred and that is the reason for the suggestion of the Dec.  Check that out with my name as "Lacie" under the Cyberknife with doctor questions.  (under AN facial pain)  It is an interesting thread.

Good luck to you as well.....



Regards,



Palace

[matti]

Hi Palace - Fatigue is still a big issue with me. By early afternoon I feel wiped out and useless the rest of the day. I know that my balance issue is the primary reason and things such as reading, being on the computer, and driving will always bring on fatigue. Spending only 10 to 15 minutes on the computer will make me feel like I could go to sleep for hours. My doctors call it sensory overload, as your brain is working harder to compensate for the loss of balance.

I took Tony's advice of taking short breaks and closing my eyes for 10 to 15 minutes. I do this several times a day and find that it does help.

I know you have been doing a great deal of reading lately, perhaps that could be what is contributing to it, plus the lack of sleep and the overall stress/worry of the situation.

I'm 49 but I feel like I'm living the life my grandparents did, early dinner and off to bed by 7pm lol

Sending big hugs,
Cheryl

[nancyann]

Cheryl:  I feel like I aged 15 years since the surgery, I'm 50 & feel like I've lost so many years.    I know alot of it is me,  need to push myself more.  I don't do any of the things I enjoy, playing piano, swimming.   I'm back to the 'pity party of 1' mode.  Not a good place to be.   Nancy