ANA Discussion Forum
General Category => AN Issues => Topic started by: Palace on November 14, 2006, 07:29:51 am
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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
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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 ...
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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
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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
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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
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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
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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
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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
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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. ÂÂ
Kathy
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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.
   Paul
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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
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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
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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
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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
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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
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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
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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
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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.
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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
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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
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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 8)
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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.
Well crap, no wonder I can't @#&%* sleep!!!
Capt Deb 8)
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Hey BB,
I'm weaning myself offa it really slowly--thanks for the thought.
CD