Fatigue?

[JWW]

So, the consensus here is fatigue a couple of years before diagnosis and fatigue a couple of years here AFTER treatment?   

[Jim Scott]

So, the consensus here is fatigue a couple of years before diagnosis and fatigue a couple of years here AFTER treatment?

JWW ~

Essentially, yes, although there are always exceptions. 

AN surgery is very traumatic to the body so it exacts a physical toll that usually requires a long time for the body to heal itself completely, even if the outward healing seems fine.  The brain has to work hard to deal with hearing loss and the 'reprogramming' that goes with it as well as other AN issues.  The tumor is benign but the effects can be problematic.  However, most are temporary and for many, that includes fatigue.  Its important to note that there is no template for AN surgery recovery.  Some AN surgery patients seem to 'bounce back' quickly and are running marathons or engaging in other strenuous activities while some are struggling with fatigue, headaches and other issues for years, post-op.  That is the reality and there is no point in attempting to sugar-coat it.  The good news is that the majority do quite well.  I did - and I'm not an exception.   

Jim

[JWW]

Jim, do you think that applies to CK, GK, and FSR as well.....the post fatigue of 2years?

JW

[mk]

I didn't have fatigue neither post GK, nor post surgery. Actually quite the opposite, with the exception of the first few weeks post surgery I have been feeling more energetic than ever.
I did have severe fatigue about 10-12 years prior to my diagnosis. It was almost debilitating at one point. Back then the doctor attributed it to iron deficiency (which was never proven conclusively by blood tests), then to my pregnancies and to having young children etc. Looking back now, I think that the onset of the severe fatigue probably coincided with the first appearance of my AN, but of course there is no way to prove this.
There is no way to predict what will happen in each individual case, there are many who do experience fatigue for long time after surgery, but many who do not. As we say here, everybody is different.

Marianna

[ppearl214]

Time to repost.....

Hi all
Over the years, I have shared a link, done out of the BrainScienceFoundation (based at Brigham/Woman's in Boston) by Nancy Conn-Levin, M.A. and Dr. Peter Black. They put together a wonderful brouchure regarding brain tumors (benign and malignant) and how fatigue comes into play (regardless of treatment options) and how to try to counteract it.

You can find it here:

http://www.brainsciencefoundation.org/Portals/0/Uploads/documents/public/bt_and_fatigue.pdf

I know it has helped many here on the forums throughout the years, so it may be worth taking a peek to see if it applies to you and if yes, ways to help counteract it.

I hope it helps.
Phyl

[CHD63]

Thanks for reposting this link, Phyl .....

I printed the article out from a previous posting and gave it to my close family members to read so they would know what I am dealing with on a daily basis.  It helps for them to see we are not just chronic complainers ..... plus the suggestions for management were very helpful.

Clarice

[MWL]

It's nice to know others are having fatigue symptoms as well (sorry if that sounds bad).  I have had symptoms on and off for almost 30 years now and was just recently diagnosed with AN.  I had been told years ago I had a rare chronic form of Ramsay Hunt as my symptoms first started a year after I had chicken pox at 18. For years it was "You have some weird virus affecting your cranial nerve" until the diagnoses of RH which ultimately proved to be incorrect.  My tumor is only 2.5 cm so with 30 years of symptoms is exceptionally slow growing.  But the fatigue is killing me.  I have had fatigue for several years and, combined with perimenopause symptoms like insomnia, just thought I was getting older (as someone else stated).  Recently the fatigue has gotten much worse but I am assuming it is because I have been put on Gabapentin.  The doc told me I would feel tired for the first 3 days and then my body would adjust.  No such luck. I'm falling asleep by 2 in the afternoon.  Or like last night, I fell asleep right after dinner until about 9pm.  Wanted to go to bed but needed to stay up until 10 for my meds--and then got a second wind and was up until 12:30am!  Makes that 6:30 wake up really early.  But it isn't just sleep.  I feel exhausted, like I am walking through jello all the time.  And like my brain is in a fog.  Do these symptoms go away after treatment?

[ppearl214]

Hi MWL and welcome.

Question... as one that has been on Neurontin (generic name: Gabapentin, for those that may not know... sorry, I'm the daughter of a pharmacist )... what is the dosage they  have you on and is it broken out throughout the day?  I take lower dosages in the am and afternoon with my bigger dose at night due to the drowsiness/fatigue.  Also depends on what it has been prescribed (ie: what diagnosis.... mine was prescribed for other reasons, not my AN) and many on the forums are also on it or have tried it with mixed results.

Again, welcome!
Phyl

It's nice to know others are having fatigue symptoms as well (sorry if that sounds bad).  I have had symptoms on and off for almost 30 years now and was just recently diagnosed with AN.  I had been told years ago I had a rare chronic form of Ramsay Hunt as my symptoms first started a year after I had chicken pox at 18. For years it was "You have some weird virus affecting your cranial nerve" until the diagnoses of RH which ultimately proved to be incorrect.  My tumor is only 2.5 cm so with 30 years of symptoms is exceptionally slow growing.  But the fatigue is killing me.  I have had fatigue for several years and, combined with perimenopause symptoms like insomnia, just thought I was getting older (as someone else stated).  Recently the fatigue has gotten much worse but I am assuming it is because I have been put on Gabapentin.  The doc told me I would feel tired for the first 3 days and then my body would adjust.  No such luck. I'm falling asleep by 2 in the afternoon.  Or like last night, I fell asleep right after dinner until about 9pm.  Wanted to go to bed but needed to stay up until 10 for my meds--and then got a second wind and was up until 12:30am!  Makes that 6:30 wake up really early.  But it isn't just sleep.  I feel exhausted, like I am walking through jello all the time.  And like my brain is in a fog.  Do these symptoms go away after treatment?

[MWL]

Hi Phyl,
  I'm on 300mg 3x per day.  This was prescribed by my Neurologist due to the intense pain and cramping in my face and prior to the MRI which found the tumor.  I think she was assuming we were going to end up with a diagnosis of Trigeminal Neuralgia and that the Neurontin would help.  It did a great job at first but the pain is slowly returning. 
I haven't actually seen that Neurologist again yet to see about adjusting the meds.  All very new.  Went to my primary care doc to get MRIs of my neck and back (diagnosed with Arthritis abiut 8 months ago) because we had recently moved back the US and this was the recommendation from my previous doc.  Happened to mention that this "episode" of my chronic illness was causing pain like never before and an increased area of numbnes.  Primary care doc immediately sent me to the Neurologist, who said I couldn't possibly have that chronic illness, prescirbed the Neurontin, and immediately sent me for an MRI.  MRI came back and they immediately sent me to a specialist ENT.  ENT has referrred me to Dr. Brandon Isaacson at UT Southwest in Dallas but then had to go back to my primary care doc and insurance company to get approval.  Got that, called the office at UT, gave my insurance info and was told a nurse would call me back.  Got the call back and was told they would try to fit me in in the next few weeks when they can coordinate with the Neurosurgeon.  Hospital/treatment center is 4.5 hours away so this is going to be a logisitical nightmare. 
Thanks in advance for any adice or help you or others can provide,
Meg

[ppearl214]

Hi Meg

Thanks for the backround info as it is very helpful.

Prescribing Neurontin for neuralgic pain (ie: Trigem Neuralgia or other nerve pain) is one of its key uses.  Sounds like they put you on a reasonable dose.  There is a user on these forums that has gone as high as 3000 mgs/day but had to cut back to 1200 mgs day.  It is my understanding that anything at 900 mgs/day is deemed "therapeutic" and sounds like that is exactly what they have done for you.  May be a suggestion to note to the dr to have them change the dosage, due to the fatigue issue, to 200 mg am, 200 mg afternoon, 400 mg night (where it can really do its trick) but it has to be done gradually under a doctors supervision.  Just a side thought.

Many have noted that after using this med for a while (myself included), the body tends to stop reacting to it. I've gone off it for a few months, but start back on due to pain levels being brutal while off.  We have also played with dosage levels in my case and always have it dispensed in 100 mg capsules so we can ramp up/cut back as needed.  I've been on it off and on for approx 8 yrs and for the most part, it does help... and I suppliment with short term pain meds to help offset when pain levels tend to flare up.

I'm not a dr... nor do I play one on tv. I have only shared my personal experience with the med and would highly suggest that if the current dosage is causing fatigue, to discuss with your dr the dosage regimen and maybe it can be worked around so you can function by day, rest by night and yet...... achieve the goal of pain control.

Just my 2 cents. I had caffeine this am

Hang in there!
Phyl

[mindyandy]

I can say yes....but I think its because I have always been a NON morning person. LOL After CK was done I did battle fatigue & it sucked. I had little to no energy and all I wanted to do was sleep. After Retrosigmoid surgery I was fatigued a little bit during recovery but was back to normal fairly quickly.
Hopefully you will gain your energy back soon.

Mindy

[Lou]

It seems as though just having conformation that you aren't alone in your symptoms/feelings is such a massive help. I also suffer from tiredness and have to have a nap most days.
Lou x