headachs and acoustic neuroma ?

[Mickey]

I`m presently wait and watch and so far stable.  Iv`e had headachs which usually come in with a "aura" for about 10+ years. They have improved some but are still present especially in weather changes.  I was wondering if there`s any relationship between the headachs and the AN? Thanks, Mickey

[leapyrtwins]

Mickey -

IMO the headaches and the AN are linked.  I personally don't have headaches, didn't prior to surgery either, but lots of AN patients do.  I'd like to tell you that treatment will solve the headache problem, but that's not necessarily true.

Jan

[Mickey]

Thanks lepryrtwins, To tell you the truth if surgery could save my hearing stop the tinnitus and get rid of the headachs completly I would opt to go for it. Right now my hearing is basicly good tinitus doing well with neuromonics and headachs not as severe as they used to be. I`ve had these symptoms for so many years. This is why I watch and wait. I figured there might be some kind of link! Thanks again, Mickey

[Soundy]

I have had migraines for years ...most of the time with aura...I had MRIs and CT scans that never showed
an AN over about 10 years time  ... one was three years prior to the one that first showed my AN... my
migraines were always confined to the left side of my head and AN on right side... for me I don't think
the two were connected...

I think that headaches associated pre-surgery are case by case ... I know for me I have
had more headaches associated with the AN post surgery and my migraines are about the same

[sabuck]

Mickey,

I did not have headaches before surgery but had pretty bad consistent ones for about 4 months post op. I am 9 months post-op now and rarely have a headache. Or at least no more than anyone does. As for tinnitus, the amount I had prior to surgery sort of increase by I'd say by at least 50%. I have dealt with tinnitus my entire life so I have learned to live with it. Don't count on surgery to make it go away. Don't count on your hearing to be saved with surgery either. The sub-occipital approach to surgery is supposed to provide for a chance in saving your hearing. Don't count on that either. I don't want to sound harsh but you need all of the facts and experiences that you can get. Best wishes. -bucko

[Mickey]

Thanks Soundy and sabuck! I`m trying to make a logical decision based on all the information I get. From what I see here it may or may not be conected which my Dr.s  say most likely not. So I`ll guess I`ll stay the course and just go by mri to mri and wait for a change. Untill then leave sleeping dogs lie! Just upsetting when you get a giant aura for 20 minutes and wait to see what type of headach will evolve. Believe it or not I must be getting used to them because the pain afterward has decreased where I don`t even take medicine. The aura scares me more than the headach! Thanks again Mickey P.S. I`m glad to see your both doing well

[Soundy]

What type of aura do you get ?

When I first notice mine I would see an outline of light around objects... the doctor told me that it
was more common to have a wash of light over vision... I got to logging and writing down stuff in a journal
to track number of headaches and what I was doing etc ect....and noticed when the aura was blue or green
minor headaches may be coming ....yellow,orange to a red light in vision they were bad and bright white
was going to require more than Tylenol to solve...

also noticed things I ate effected number and severaty... I would eat a salad and have a head ache ...thought
this odd but when started listing what was in salad noticed that headaches came with salads I had bacon
crumbled on or if I had almonds or sunflower seeds on it ...had to play detective with help of my doctor and
eliminate processed and smoked meats,most nuts and seeds , avocados and a few other things...

if the headaches you have are not AN induced diet may be worth checking into ...


As for waiting and watching with MRIs I am all for that if it is right for you ... I watched for nearly 3 years until
the AN took a big growth spurt...

As Sabuck already told you ... don't count on the surgery clearing up tinnitus...mine is worse than presurgery...I don't
think it is really louder , but since losing the hearing in the left ear there is no outside noise to mask the ringing
so it is more noticeable...some days it does get on my nerves but as of today I am a year post op and I am
learning to cope... I have bad days (sometimes bad weeks ) but my nearly nine year olds favorite quote to do with
my whole AN adventure ... But you are breathing   keeps me grounded ... I kinda like to breathe 

been rough coming up to this one year anniversary and still having headaches from surgery ... but just getting past
today has made me feel better

[Mickey]

Hi Soundy, thanks for the informative post. My aura has actually gotten better over the past 10+ years. My first experience I thought I was having a stroke. Lost half vision and got numb in my arm and

 left with a bad headache. I used to take imitrax. Over the past few years a much more subtle looking like lighning rods in circular patterns of light. I usually wait 20 minutes untill it subsides and sometimes am left with a mild headache. No medication usually required, maybe a tynol. Kinda Freaky!   Thats cute what your nine year old said. Things like the will keep you going forever! I`m waiting for my first grandchild soon. Lets keep the faith as we communicate and find ways to cope, Mickey

[GRACE1]

I had my first "migraine" headache in 1991.  I had the aura and nausea, but no pain.  My ophthalmologist said I was having an incomplete migraine (since there was no pain).  I continued to have these about 3-4 times a year.  They used to do me in for about 24 hours; I felt drained.  Since my treatment, I have had these episodes several times - but they are different.  The auras last no more than 15-20 minutes, I don't get nauseated, and I don't feel drained afterward.  Surely these headaches must be related to my AN.

[Cheryl R]

I got my first migraine when I was pregnant with our first child.           I have only had the type with the blind spot and then the bright jagged lines for 20-30 minutes and usually only slight headache.   I read once where this is called atypical migraine.        I don't get them too often and even less since have been on lopressor for elevated BP. 
I have read where having low magnesium can be a factor in getting migraines.     Hormones can be a factor in women.               I have a friend who gets them less since she learned to avoid chocolate and food with soy bean oil.         She has to really watch what she eats now.          I would hate to have to avoid chocolate!          I couldn't survive.   
                                               Cheryl R

[yardtick]

I've been getting migraines since I was 13.  I got everything that goes with a migraine.  In my mid 30 it was brutal.  I was on an experimental med, taken just as the aura started with an escape med to take after 30 min if the experimental med didn't work.  It never worked

I was told my headaches were hormonal, what else is new! and diet related.  The headaches I get now are far more severe.  Can they really be classified as migraines?  I don't know!

Anne Marie

[Esperanza]

I've been having migraines for the last 12 years (with aura) on and off -  GPs put it all down to hormones every time I went...
if only one of them had taken
the time to send me for an MRI..
Funny that my AN measures 12mm....

[Mickey]

Must be some kind of relationship here. Just too many coincidences. When somethings on a nerve I`m sure it has a way of traveling and disrupting the whole "apple cart". It`s good to compare notes to at least come up with different theroy`s and ideas. Interesting! Mickey

[grannie_annie5]

Reply to Mickey, I think all acoustic neuroma paitients react different to pre and post treatment.
It's been 5 years since my surgery and it has been horrible, I have headaches at least 4 days a week,
my balance is about as good as my 4 month old grandson.
As for my face being numb yes it stays numb along with my tongue.
but i still think the hardest part for the past 5 years is short term memory loss.
I start each day with my wonderful husband and writes me a list of what to do that day,
I am not allowed to turn the stove on because I have about burned our house down twice.
any who....Mickey I wish you the best and I would love to talk with some others that has turned out worse.

[leapyrtwins]

Hi Annie & welcome 

Five years is a long time to live with the kind of symptoms you describe; surely there must be something that can be done to improve them.

Have you consulted with your doctor about any of them recently?

There are several people on this forum who experience headaches and are helped with either medication or nerve blocks.  If you do a search on "headaches" or "nerve block" you will find some useful posts that may help you.

There are some wonderful physical therapists who can help you with your balance.

I encourage you to try to find solutions.

Jan