Radiation and headaches

[mema]

Just curious.  How many folks out there who had some type of radiation for their AN have headaches.  It seems like this is a classic surgery side effect, but I had FSR and have chronic headaches. 



                                                                                             mema

[ppearl214]

Hi mema,

The first 6 mos post-CK, I have had some pretty good migraines and found that (for me) Imitrex helped.  Now just over 1 yr post treatment and the headaches have subsided for the most part. I do find that if I'm overly fatigued or stressed will help bring them back on (as well as... um... "female time") but as of now, the good days definately outweigh the bad when it comes to the headaches.

Here's hoping you are doing well!
Phyl

[Betsy]

Phyl, did you have migraines before AN diagnosis, or have yours all been post-treatment?  I wonder if you'd be more likely to have migraines after treatment if you'd been having them all along.

mema, can you take anything to stop the headache or lessen the pain?  Imitrix works great on migraines, and I've found that a Coke (not diet, and not Pepsi) and a couple aspirin works too, as long as I take it very early on, before the migraine "crosses the line" into vision disturbances and nausea.  Tension headaches are another story!

Betsy

[ppearl214]

Phyl, did you have migraines before AN diagnosis, or have yours all been post-treatment?  I wonder if you'd be more likely to have migraines after treatment if you'd been having them all along.

Hi Betsy,

since I have a dual-diagnosis of AN and Chiari 1 Malformation, both have many of the same symptoms (ie: dizziness, balance issues, etc).  I can usually figure out which migraines are caused by the Chiari 1, which are caused by stress, etc.  In my case, I was having good migraines before my AN CK treatment.  Immediately post-treatment, they were enhanced for approx 6 mos, but for the most part, have subsided now.  I still get the Chiari migraines, but as for the AN, at this time, I do not attribute the AN nor the CK treatment to the migraines.

I know it's a bit confusing but I hope that helps.

Phyl

[Betsy]

Phyl, I had to look that up.  Talk about a double whammy.  You deserve a medal for your great attitude.  Did you have surgery for the Chiari 1 Malformation?  If so, did that impact your decision to go with GK?

The topic of migraines and AN is very interesting to me because after looking at my MRI, both the neurosurgeon and radiation oncologist thought that my vertigo probably wasn't caused by the AN, but by migraines.  They're more interested in the AN of course, so I've been talking to my primary doc about it and there's something called "migraine associated vertigo" that matches my symptoms exactly.  I started a migraine diary to see if there are any new triggers.  Dang, I thought I was outgrowing the things!  Little did I know you can have migraines without the blinding pain.  Here's a link that describes it pretty well.

http://www.american-hearing.org/disorders/central/migraine/mav.html

On a side note, one of the good things about having AN is that your vocabulary increases...it's amazing how many times you can work "schwannoma" into conversation.  My favorite is using it like a curse word, as in "son of a schwannoma".

Enjoy the weekend,

Betsy

[Windsong]

I began having headaches about four months post fsr. Tylenol didn't seem to help... ( i had migraine type headaches as a kid of 4-5 then at 10-11-12 ,they stopped and began again in my early 20's for a few yrs. Since then not a big deal with only a rare headache that was bad. So the post fsr headaches were new... they stopped too about a month and a half later, but i seem to be getting some new head pains now which are unusual for me and i am wondering if they are the migraine without the big pain...

[mema]

Betsy,  My AN was under 8mm.  I had slight hearing loss, bouts of vertigo that kept me in bed for a week.  And vertigo about twice a week that I would have to stay in bed about an hour.  I felt woozie alot.  I can't take any aspirin  type meds because I gave a bleeding disease.  Tylenol helps for the mild headaches, helps slightly for the big ones.  I loss my hearing on the AN side 6 mos after radiation.  I'm glad to hear you have taken a watch and wait decision for now.  Hine sight I would of to.                                                                                             

[mema]

Betsy,  last post was from mema.

[ppearl214]

naw, Betsy, I just do my best.. thank you for the kind words   I had Cyberknife done and was irrelevent for the Chiari. I have not had the decompression surgery yet as it's a mild, but symptomatic case of CM1

mema, please refresh my memory... what kind of radio-treatment did you have? Was it FSR/Novalis? 


Phyl

[Sue]

I had Gamma Knife (the One Shot Wonder) and I don't have headaches.  If I do they are often sinus related. In fact I think I have less headaches now than when I was younger.

Sue in Vancouver

[ceeceek]

couldnt help notice topic..I have suffered migraine headaches for years...so has my father, sister, aunt and nephew....which is how I found out about said tumor to begin with..unlike most of you with the hearing and ringing issues.....everyone said...tumor is not cause of headache..with exception of chinese Dr who said..duh...you have a foreign body in your head..of course it is giving you a headache....
Since my lovely little not so successful surgery...though.....I have noticed.....no headache..or migraine anyway...lots of trigeminal nerve and vidian nerve pain in the but issues..but actually no headaches.....so maybe the tumor was removed just enough to get off the nerve it was aggrevating..
In the interim....there have been lots of studies to suggest that dehydration plays a large part in migraines so always keep that in mind.....are you drinking enough fluids etc...
The coke suggestion does work as does any high caffiene item...for those with tummy issues, I suggest. Ice pack to back of neck..large glass of water....and if you can find it and tolerate it....(must use caution with certain drugs) ephidra..similar to caffiene...if you cannot find and or tolerate that,,you may also try Gurauana.....it is used by bushmen to stay awake over several days during hunting..it does not cause jitters...if you can tolerate it with tylenol it is quite effective...
Personally I like good old fashioned excedren but once again, if you have a bad tummy it can be harsh....take it with yogart or something like cheese which really helps and issues..
Good luck
Ceecee

[mema]

Phyl,  I had FSR/Novalis 25 treatments.  The headaches started day one.  The Drs. blamed the headmask being too tight.  But here I am 17 months later still with headaches.  I see a connection with my brain feeling.  See my thread for radiation and brain movement.  In fact I went headache free for four days last week but them I tried taking a nap and got this brain movement feeling.  Woke up headache and it hasn't gone away.  This is my cycle.  I'll probably have daily headaches for weeks.  I get my MRI next week go back to MD anderson June 8.  Hoping to get some answers, but not expecting any.

                                                                                                  Mema

[kat]

Hi Everyone

I am pretty much the same as Sue since after my GK I have had fewer headaches than ever ! I feel really lucky since I used to have
very bad migraines regularly when I was younger .

Regards Kat