Fatigue

[Palace]

Cheryl and Nancy:


I'm going to put a HIGH priority on this fatigue thing.  It is important to me.  I lost my youth to helping someone in need.  I gave the rest of my life to school and working double shifts.  (that being in the dental field of my life)  I had some quiet time with my other Golden Retriever which I had before these littermates I have now.  I did lots of watercolours.  There was one short time in my life when I could sleep which I mentioned before........about six months without the help of OTC pills, etc.  Now, in short........I had all those 19 surgeries and was ready to start my life.  *(start my life?)  I'm still planning on it after CK.  Stay tuned on this fatigue thing; I'm "going for it" and plan to beat it all.  I will let you know what I come up with as far as beating the fatigue.  Keep me posted as well.  Maybe we can all work together on this.  If we beat the fatigue, we can accomplish things that will progress and prosper getting back into some quality of life.  (sleep, lack of fatigue and good attitude)  Well, it sounds good, anyway.



Thanks and keep the ideas coming,



Palace

[ppearl214]

Hi Palace and all.

there is a thread in "post treatment" that our fearless Captn Deb started, after reading a very informative "Brain Tumor and Fatigue" pamplet I emailed to her, that I picked up at the Brain Tumor Clinic at Brigham/Women's Hospital in Boston.  It discussed al aspects of fatigue, from pre- and post-treatment (regardless of treatment) and regardless of form of brain tumor (benign or malignant).

Below Capt'n original post, Stein put a link to the pamplet for ease of access.

Please see this link:
http://anausa.org/forum/index.php?topic=1969.0

I hope you all find it as informative as I/we did. I hope it helps.

Phyl

[tony]

I have posted this before but the balance/tiredness issue is ongoing
I understand your concerns, and have a few ideas for you.
A factor in the fatigue is an "overloaded" balance mechanism
Basically "pre-condition" it was automatic - now , the sight mechanism is
working with the remaining balance system to keep you upright
(and on the straight and narrow ?)
So the brain is now working harder and more often.
If you like, the brain is having to work TOO hard
-This will cause fatigue sensations
and they are real, I have been there
- exhaustion might be one description
- but amazingly when the body is NOT really tired in a muscle sense.
So Solutions :
One - you need to restart work rebuilding
the balance with (sorry...) more exercises.
Basically the more you retrain the new balance
- the better it will get and the more automatic it will become
In consequence the less tired you will feel
In the short term it will be tiring
- in the long term your stammina and durabilty will improve.
Two - be aware of fliud and blood sugar levels
both seem to play a close part with good balance
note that tea and coffee, and fizzy drinks  dont really help fluid levels
(they lose more fluid than they add)
Three - take a break, with the eyes rested
I find just 10 mins with eyes shut is worth easily
two hours sleep - the system resets itself somehow.
Hope this is of use to you
Best Regards
Tony

[Crazycat]

Palace, I sure can relate to the fatigue problem! I was walking around like that for two years as well as with lightheadedness, double vision, and left-side deafness. Before going off to work at night I would take two Advil Cold & Sinus pills to get a boost from the pseudoephedrine. Then the fun really began when my equilibrium went on me after hydrocephalus kicked in.

 Ã‚      Paul

[Palace]

Phyl,


I have been gone all afternoon now and got home in the dark.  I will check what you sent in the morning.  Talk about fatigue, I can't sit here to respond much but, I can thank you for helping me.



Pal

[Palace]

Tony and Crazycat,


Tony thank you so much for all that information on what to do and CC, thank you for the info on what not to do.



Love you both for your efforts.......I will print it all out....



Hugs,



Palace

[BevM]

Hi Palace:  Just want to put in my two cents worth on the fatigue which I have experienced too.  I have gone through about 1 year of  figuring out what was causing my symtoms,research and decision making regarding treatment.   I think this whole process causes mental, emotional and phy sical fatigue with fighting my balance being the most impactful.  I had CK treatment and they did give me Decadron just during the three days of treatment and I really didn't have side effects other than a little more difficulty sleeping (which could have been attributed to the whole treatment process not just the Decadron).

Best Wishes on your CK treatment.  I think its a good choice.

Bev

[Palace]

Dear BevM about the "Two Cents Worth,"


I appreciate your "two cents" worth.  It gave me hope on the Decadron.  I might not have the same reaction to that like I did the prednisone.  (even though both are steroids)

Someone asked me to a special jazz concert for tomorrow night.  I have an appointment out of town in the morning and errands the rest of the day.  I know what I will feel like at about 4:00 PM so, I told them I couldn't go.  It will be a late nighter.....start late and down in Capitola.  If I tried to go has anyone used expresso to do something at night?  I probably wouldn't get home until midnight or so. 

If this were after CK and I was trying to get into some "life" instead of existing which has been happening the past many years with all these surgeries, I'd try it if expresso would work.



Thx for the input,



Palace

[matti]

Palace - I think you should go to the concert tomorrow night. I find that music is very uplifting and relaxing, I think you need that right about now. I know you have a full day, but maybe you can squeeze in a little nap beforehand and a cup of espresso never hurt anyone I Luv the stuff!!

I spent many a summers (teenage years) hanging out in Capitola.

hugs,
Cheryl

[nancyann]

Phyl:   I read the article on fatigue - THANK YOU SOOOO MUCH - it really makes sense, so me & the others aren't nuts (not yet anyway!!) lol.    I almost cried after reading it.   Really brought my spirits up.   Nancy

[Palace]

Matti-Cheryl,


I got out my exresso machine which was put away in the shed.  I was ready for tonight but, awoke with a whopping cold.  I got my husband's cold.  I have a "full-blown" cold with the ache behind the eyes, sinus, sneezing, sore throat and all.  I will cancel the music date for tonight.  I was ready to take your suggestion.  It would have been three of us.  (my other lady friend who is losing her son to cancer and there is a fifty-fifty chance for him if he goes through with it.  The guy has been through so much but, his brother is a perfect doner for the bone marrow.  The poor mother (the guest who was to join us for the music fest) is a wreck.  She is my closest friend at this point.  Please hold good thoughts for her and her son today.  The results come back this afternoon if Stanford can do this with the help of the brother.  *(I know there is another match that could be flown in from somewhere)  This poor guy has been through so much and has about had it.  He is considering backing out and taking a trip somewhere and giving up.  He is an inspiration to me, actually.  He write lovely songs and plays concert piano.  TALK ABOUT FATIGUE!  So far, he is "hanging in there."

My question still is..........I guess I can keep my Ct Scan and Cyberknife appointment is I have left-overs of this cold say, a cough?  I will see how I feel in a week.  It is slightly over a week away, now.

Please put my friend's son in your thoughts and prayers.  He is one of the nicest person, I have ever met.  (so sad)

Cheryl..........I have a recording of one of the man's composition on piano.  It isn't a good copy/tape but, he is fabulous.  Perhaps he can play and I will sing if he makes it.  I would like to make a CD of us together.  (remember, I'm a trained singer)



Thanks for all the support,



Palace

[Gennysmom]

This is an older article, but this IMO is another reason for fatigue and sleep issues of AN patients....and interesting article:

http://www.sciencedaily.com/releases/1998/01/980123071732.htm

been meaning to post this, but it took me a bit to find it...remember reading it back in April or so, but never dog-eared it.  I think more attention should be paid to tinnitus and it's link to the limbic system and how it can wreak havoc with ANers.

[BevM]

Palace:  Another thought on concerts or other places with loud or background noice.  I have found that using an ear plug in my AN ear actually helps with the pain and sound distortion.  I know we all experience different hearing and pain issues but thought this might be something to try.  I am finding ways to adjust and manage symtoms so that I can continue the activities I enjoy and believe this also helps reduce the fatigue.

Regarding going to treatment with a cold (cough more of an issue) the mask holds your head pretty still and the Cyberknife actually stops if you move.  Probably best to run it by the Doctors though so you don;t make a trip for nothing.

Best Wishes,

Bev

[ppearl214]

Phyl:   I read the article on fatigue - THANK YOU SOOOO MUCH - it really makes sense, so me & the others aren't nuts (not yet anyway!!) lol.    I almost cried after reading it.   Really brought my spirits up.   Nancy

Nancy,
I'm thrilled it helped... it certainly help me understand a LOT and remains in arm's length of me at home. Had cheeky bloke read it to so he understands why i tire as I do..... helped him to understand.  A great read for those that haven't yet.

Hang in there folks!
Phyl

[Captain Deb]

I may be nuts, but I'm so fatigued all the time I can barely get dressed in the morning and can hardly drag myself upstairs to work. I'm on 2700 mg of Neurontin and I think that's doing it to me. So I'm weaning myself off of it. I'd rather have a headache occaisionally than feel like this all the time. Besides, I reached the cap on my prescription coverage with BCBS (BS is right) and I have to pay for my meds till January. My Imitrex is $90 a vial (usually 4-6 vials a month) My happy pills are $250, My sleepy pills are $300, tummy pills are $200, and the Neurontin runs about $100. Jeeez am I high maintenance or what?  Time to start calling the docs and begging for samples till January!
Capt Deb