Fatigue

[mrmel]

Hi everyone
 It has been a while since i have been on. Hope everyone is doing ok. I do not remember if i mentioned this before but i was wondering how many of you have had fatigue problems since or before your surgery? I started having problems about a year prior to the discovery of my tumor. I have not had a refreshed morning since ever. I wake up exhausted and tired with brain fog. No test, no doctor has ever found a reason and they all say it is not due to the acoustic neuroma. No one has ever been able to help. I would be interested in hearing if any of you have this problem and if anyone has had any success in getting better. It has been 14 years for me.
                          Mel

[Itheus]

Hi Mel -

I believe there was a similiar post not too long ago.  I was diagnosed with an AN about 2 months ago.  It's only 8mm but it's been enough to wreak havoc on my hearing.  I have no balance problems yet, but fatigue is something I've recently started to experience.  From my understanding it comes from one side of the brain compensating for the affected side, therefore creating the fatigue.

The only imput I can give is my own experiences and what other people have said.  I too have very tough mornings (I used to be a morning person).  Once afternoon hits, I'm typically ok.  But mornings are just brutal! 

I wish you all the best!   

[mrmel]

Thanks itheus, i appreciate your reply. I think probably you are right about the brain compensating.
                Mel

[Itheus]

Mel -

Here is the thread I was thinking of.  You may find some great information here:

http://www.anausa.org/smf/index.php?topic=15350.0

[Shawn713]

Hi,

I had a 1 cm tumor treated with radiation surgery in Feb.  I was always fatigued in the afternoon and could nap for an hour or so everyday.  I have noticed a little more energy now 4 months post surgery, and also, exercise helps a lot for me.  I run 3-6 miles 5 or 6 days a week and this keeps my metabolism and energy levels higher.  Drinking a lot of water is also a benefit for me now.  Good luck Mel!

Shawn

[oldstar]

I have experienced this "fatigue" syndrome for quite a long time, probably starting with the advent of the AN.  The fatigue and dizziness started happening at the same.   time just barely noticeable and progressively  becoming more dominant.  Waking up tired after 8 hours sleep seems to be my normal day. I have not had physical surgery but, rather, something called stereotactic proton radiosurgery at Mass General Hospital in Boston, MA.  I am awaiting my 1 year MRI to see if the tumor was killed.  All things considered, if the only repercussions are dizziness, imbalance and fatigue, I can manage that.  At 76 I have survived Melanoma and numerous broken things and still wake up in the morning, albeit tired and a bit foggy.  Therapy has helped me manage the balance problem but has not restored it.  Thanks for alerting me to the fatigue as I was worried about how that came about.

[Lesliegc]

HI Mel
I was diagnosed only 2 weeks ago. I didn't have any (that I noticed) hearing loss--the thing that brought me to the doctor in the first place was this overwhelming fatigue and increasing disequilibrium....both are worse in the morning. The dizziness like sensation in particular. I have very little physical energy, and I used to have a lot. I have my surgery 7/25 and am hoping and praying that sometime after I come back to feeling like myself. I hope that for you too! btw my tumor is small, only 4mmX8mm, and until recently didn't have any hearing loss, only the dizziness and fatigue.
Leslie

[skipg]

Here is a link that was posted recently. It helped explain the fatigue I am feeling.

http://www.brainsciencefoundation.org/matriarch/documents/bt_and_fatigue.pdf

Skip

[mrmel]

HI Mel
I was diagnosed only 2 weeks ago. I didn't have any (that I noticed) hearing loss--the thing that brought me to the doctor in the first place was this overwhelming fatigue and increasing disequilibrium....both are worse in the morning. The dizziness like sensation in particular. I have very little physical energy, and I used to have a lot. I have my surgery 7/25 and am hoping and praying that sometime after I come back to feeling like myself. I hope that for you too! btw my tumor is small, only 4mmX8mm, and until recently didn't have any hearing loss, only the dizziness and fatigue.
Leslie

Thank you Leslie for your reply. i wish you much success in your surgery and hope it goes well, i know it will! Remember we are here for you!
                Mel

[New girl]

Hi Mel,

Sorry to hear about 14 years of fatigue.    I was recently diagnosed on 6/1/11 and am still investigating options (leaning towards surgery).  The more I read this forum the more symptoms I realize I have had for over a year now (fatigue, fullness in ear, balance issues, tinnitus, etc).  Most of the symptoms I brushed off since I have a somewhat hectic job so I figured I must be stessed/exausted.   In the past ~2 years I rarely ever feel rested.  Sometimes I feel OK for a hour or so after I wake up but then I just feel like I need a nap.  I wonder now if it is tumor related.  Take care.  Let us know if you find any good info.

-d

[jaylogs]

Hello Mel! Wow, 14 years...I guess that's not unheard of though...I haven't heard a post-surgery patient yet who said that they were just as alive and vibrant as before all this happened.  I myself, after 1.5 years post still get hit with it often.  Case in point, I just went on a trip to Hawait (Maui) and I took this road tour called the Hana Picnic. You get in a van and then for the next 4 hours go through 617 curves and 54 one way bridges on this road to the little town of Hana.  Some of the most beautiful country you'll ever see, but oh my my, I was an absolute mess by the end of the day, and then all the day after.  Too much stimuli on the ol' brain.  I also messed up and sat more in the back, had I sat in the front seat, I probably wouldn't have been too bad off.  So yeah, I think these AN's and post-surgery affect people differently. If you have tinnitus, that may also be a contributor, as I have read that if bad enough, this could cause some issues with sleeping and concentration.  I have it pretty good (or bad, depending on how you look at it!) and it does wear on me sometimes.  So that's my $.02 worth on this! Take care and I hope you find some relief somehow!
Jay

[CHD63]

Mel .....

If there is a common thread among people diagnosed with an acoustic neuroma, it is fatigue.  Part of the reason is simply the healing of the brain post-treatment (be it radiation or surgery) and part of it is the struggle during all of our waking hours to hear or maintain balance or deal with headaches, etc.  All of those things are unique to an AN patient and the combination(s) is what wears us out.

I deal with balance issues and hearing all of my waking hours and sometimes I just "hit the wall" mid-activity and have to sit or lie down for a few minutes to let my brain rest.  Then, I can get up and go again.

As Jay said, the more stimulation the brain has at a given time, the longer it takes to recover.  If I have been doing something much more strenuous than usual on a given day, I can count on the next day being much less productive and more resting.

Clarice

[Cindyswart]

Hi There, the fatigue is just so hard to manage, especially if it was not a problem before. We discovered, however that I also had Epstein Barr. That explained allot when it came to how my symptoms were being managed. It seems for me the Epstein Barr, Herpes Simplex I and the AN are all intertwined for me. After a year the Epstein Barr levels are way down in my blood so I feel pretty good. The Simplex I is still high and they can't quite figure that one out. I have my surgery in Aug so I am hoping for some daylight in my journey soon.

[Jim Scott]

Mel ~

I'm sorry to learn of your long-running fatigue that leaves you feeling tired after waking.  I think the point has been fully made that AN surgery/radiation generates fatigue for all the reasons others have listed.  I had a fabulous outcome to my surgery and radiation (performed as a combined attack on the tumor) but even now, five years later, I don't have the kind of stamina I once had.  To be candid, I attribute some of that loss to my age (68) but I have to wonder how much energy I would have if the AN never existed, much less the surgery and radiation.  Fortunately, as a retiree, I can structure my activities in a way that doesn't make my lack of stamina/energy a problem but sometimes, unexpected events happen that are mentally and/or physically demanding.  I usually get through them just fine, but the next day I'm still feeling a distinct lack of energy.  However, I've always been a sound sleeper.  I just don't get as much out of a nights sleep as I once did.  Still, your situation seems extreme and may not be related to your AN experience.  Finding the cause can be arduous and usually involves many tests but after 14 years, it might be worth it to get a good nights sleep!  I hope you can, soon. 

Jim