Fatigue after 8 years

[Patti]

hi all!  i had a rough situation with my surgery almost 8 years ago (2nd surgery due to brain swelling and a partial removal of my cerebellum) but i am still so caught off guard by tiredness.  i am on disability but work part-time.  if i concentrate on something for 3-4 hours ,then i come home and crash on the couch.  if i do alot of physical stuff one day, then i am fatigued for the next two days.  i exercise very regularly, work 10 hours a week, and have a family (soon to be leaving for college).  is this fatigue some result of brain trauma that will be with me forever?  i have tried everthing and seen many doctors.  they just say that some people after a stroke (which essentially i had from brain swelling) will always have fatigue.  is there anyone out there with this problem after so many years?  patti

[HeadCase2]

Hi Patti,
  Sorry to hear about your AN experience, it sounds like you had a rough time of it.  I've seen fatique mentioned in medical literature for brain tumor patients.  And I think most of us AN patients have experienced it to lesser or greater degree after AN treatment.  But there can also be other causes of chronic fatique, like hypothyroidism.  It may be worth mentioning to your doctor for follow up to make sure that some other issue isn't casuing the problem.
Regards,
  Rob

[Patti]

actually, i do have hypothyroidism.  i have been medicated for 15 years at the highest possible dose.  great suggestion though.  thanks for replying.  patti

[Kaybo]

Patti~
I had my surgery 12 years ago and still struggle with getting too tired.  Usually when other Mothers are running around the house after they get their kiddos to bed, cleaning the kitchen & doing laundry, I am too wiped out to do anything.  More than one doctor has told me that I will always be more tired at night and better in the mornings.  That has DEFINITELY been the case.  I don't seem to have what you are describing (I COULD take naps, but just don't have the time for that), but I guess I have learned my limits.  When I was still working full-time and just had one child, the neuro told me I should just be doing ONE of those things - of course, my reply was that I was trying to get pregnant again!!  My husband is a saint and helps me TONS!!  I am trying Rhodira (sp?) as soon as it comes in.  Eve suggested it on another thread...

Sorry I can't give more encouraging information!
K

[Patti]

k-it is encouraging to me to know that my tiredness can be linked to my brain tumor.  That way i don't feel bad about myself.  Patti

[Maverell]

Patti, I still suffer from fatigue 20 years after the op.  I can be sat still, or in the gym, and I just suddenly need to sleep. I close my eyes for ten minutes and wake up totally refreshed.

I was told that it is quite normal for patients who have had any major brain surgery to be like this.

[Kaybo]

Patti~
I also think that the ones of us that had a "stroke," a longer surgery (mine was 14 hours) or a more traumatic post-op situations can have lifelong things that we will have to deal with.  I do not think in ANY way that you should think it is YOU -- blame it on the surgery.  I mean, I don't live my life in a giant pity party (& I am sure you don't either) but I realize it for what it is and try make the best of it.  I figure everyone has something they have to bear in this life - mine is just more visible and longer lasting than most!

K

[tony]

Yes the fatigue thing is for real - frustrating isnt it ?
To a point you can exercise and train it down to a minimum
but at 8 yrs out - I think its about as "down" as it will get
My alternative strategy is to understand exacty what
the tiredness is
Normal fatigue is poor blood sugar- lack of oxygen- lactic acid build up - hunger
The brain fatigue is an "overworked" brain
- the body is not tired - but it sure will feel like it.
The clue is in the "long periods of concentration"
its this that is exhausting you (A noisey place will make this worse)
The Good news ?  I have found you can re-set the whole system
- just in a 10 minute style break
Its a bit like shutting down an overworked computer
and restarting 10 mins later
Key points are
1.Quiet
2.Sitting
3.Eyes shut
4.10 mins only
What I am suggesting is do 50 - 60 mins "work"
then the 10 min break - then another 60 mins and so on
I have found both endurance and vitality is much greater this way
Can I wish you
Good Luck and
get well soon ?
Best Regards
Tony

[Kathleen_Mc]

Fatigue is something that remains with me, 18 years post -op (almost) for me. Before I had my children I coped but just sleeping whenever I felt the need....except when at work! Since my children were born I cannot do this and just continue to drag myself along and do what I can. My doctor's have told me that I should not be working full time, they told me that right from the start, that it is not in my "best health" interests.....but hey, need to eat!
The only suggestion I have is: sleep when you can!
Kathleen

[Patti]

thanks everyone!  i am glad to know i am not alone.  i value your suggestions, tony.  i crashed on the couch after a dentist appointment and grocery shopping today with no guilt!  i am so glad to have this sight to go to.  patti