head aches

[jdunavan]

So one of the original reasons i went to the doctor was because i was having frequent head aches.  My ear pressure seemed related, so that is why i went to an ENT.  The first doctor i saw was awful.  He totally blew of my headaches.  After all the tests, when it was found that I had an AN, he continued to say he didn't think my head aches were related to the AN.  I have NEVER had headache issues before, other then sinus stuff. But now i have daily headaches, mostly in the back of my head.  And they pound and hurt worse when i bend over.  Am I crazy to think that it is the AN or was my doctor crazy?  Anyone have thoughts? Has anyone found anything that helps relieve the headaches?
Thanks,
Joanne

[Kaybo]

All I know is that I had HORRIBLE headaches before I had surgery (I didn't think about it as daily but they were VERY frequent!) and I hardly EVER have a headache now!!  Maybe once a month...??

K   

[CHD63]

First of all, Joanne .....

You are not crazy.  Hopefully that doctor is not crazy either ..... but he was at the very least, totally insensitive in treating you, his patient.  A little compassion here would certainly be in order!

Hopefully the neurosurgeon you are seeing this week will be able to guide you to some temporary relief until you have treatment for the AN.

Ice may be your best friend and I would certainly avoid bending over and aggravating it.  Remember it is not only the size of your AN that is significant, but its specific location, as well.  If it is pressing on an adjacent nerve, it could certainly be related to the headaches.  Has any doctor suggested taking steroids to see if it is a swelling issue?  It may not be a swelling problem, but it never hurts to ask.  (Remember, I am not a doctor.)  Be sure you ask the neurosurgeon what he would recommend to relieve your pain.

Many thoughts and prayers.  Clarice

[Larry]

Joanne,

Normally headaches arise from post surgery but there are those that suffer pre surgery. You need to see a good neurosurgeon who can read an MRI. maybe your AN is pressing on something (be it nerve, brain stem etc)

laz

[cin605]

I would wake up some days and feel like i was hit in the back of my head w/ a baseball bat....AN is out...and i still wake up like that.
i would go w/ your gut instinct...nobody knows your body like yourself.
Best of luck in this journey....Glad your here.
Cindy

[mattsmum]

my ent doc does not believe my headaches prior to treatment were caused by the AN, although he accepts they were 1 of the reasons i went to my doctor.
i however disagree with him on this - i have had migraine since my teens but had a new type of headache in the months leading up to my diagnosis. this was bilateral (rather than 1 side) and often woke me in the morning. sometimes would go away, sometimes not, after getting up. they are worse with bending over, and coughing/sneezing.
since my radiotherapy i have had more of these, only worse, with tumour swelling. my tumour is resting on my brain stem, and now pushing it some, although not causing hydrocephalus (thankfully).  i have also had trigeminal neuralgia which is different - and caused by the tumour squishing the trigeminal nerve.
i take amitriptiline for the trigeminal neuralgia, which has helped a lot. my neurosurgeon thinks steroids more likely to help, but i found the amitriptiline better.
for the general headache i take paracetamol with codeine. 8mg per talet of codeine for a moderate headache; and 30mg per tablet for a sever one. when bad they can stop me doing anything. i have to get the latter from my doctor as they are prescription only (i am in uk).
hopefully they will get better as my tumour swelling settles.
i hope you find some relief soon,

vikki

[Larry]

There are numerous reports on headaches and it does appear that everyone is different. My summation of posts would indicate that AN's don't seem to cause headaches however where people have had other past related issues then the An seems to be a factor in either bringing those headaches back or making them worse.

I never had a headache in my life prior to surgery. Can't even say that the AN gave me one either - It was definitely the outcome of the surgery that got me. However, there are probably 10 different impacts to others.

I guess its trial and error in the fix. I tried just about every drug out there and have settled on neurontin (gabapentin) as my help.


laz

[kzanana]

First thing I would do is look for a new doctor. Are you having the AN removed ?? I too still have the "baseball bat headache" daily after removal but that does not mean you will.  I found that since the doctors have not had an AN they have NO idea how it feels, before or after removal. I wish you luck in this journey and we believe you !!

[Patti]

i went to the GP for headaches that were so severe some mornings i would vomit.  i was diagnosed and had AN surgery and those type of headaches are gone!!!!!  i can't imagine that they were unrelated.  how big is your tumor?  patti

[Shan1014]

I am currently battling that issue also.  I had, what I thought, was a great ENT doctor.   I had radiation 5 months ago on a large tumor that is very swollen right now. When I called him, at that point, I had had a constant headache for 4 weeks, he said - "you shouldn't be having headaches".  I almost went through the phone line to strangle him! They are weird headaches that I know are caused by the AN.  He sent me to a Pain Doctor who gave me Lyrica as a shot in the dark type of thing.  It has taken the edge off of them, and it did it right away.  I have only been taking it for a week.  It does make me drowsy though.  Good luck to you, these aren't fun.  I have found that nothing infuriates me more then people, especially doctors, telling me I shouldn't be feeling the way I am.  Take care and don't back down.  If one won't help you, go to another.
Shan

[FLsunshine]

All my docs have also said that my MORNING headaches are not caused by the AN.  But all I can say is that they weren't there before and now they are.  I can empathize with you... feels like a vice... all in the back right side of my head where AN is... excruitaitng and debilitating when its day after day.  While my docs said it was unrelated they were sensitive to my needs to treat the headaches regardless of why I was getting them.  And that's what you need to find in a doc... someone who will listen and treat.  Took me a while but my headaches are now virtually gone.  In my case neurologist put me on Tizanidine and Diflocan. 

Pre-treatment headaches on this forum seem to have similar characteristics and especially the morning wake up.  So to me that's more than a coincidence.

Good luck.

[LisaP]

Hi,

My doctor has also told me the same thing that my headaches are also not related, but since my dx my headaches have also gotten worse.  I tend to listen to the doctors but I listen more to my body.

Hang in there

LisaP

[Soundy]

I had left sided migraine headaches  pre-surgery ... AN was on right side ...had them weekly sometimes twice a week ... since surgery have only had 3 or 4 migraines ...

but with surgery I developed headaches worse than any migraine I had ever had ... and I suffered from an insensitive doctor that did the surgery and then for most part was not sure what to do with me and said that he didn't think surgery had anything to do with my new headaches ... but they are all right side and radiated from surgical site , a sneeze or cough could but me in bed ... alot of Tylenol and hydrocodone kept me partially functioning    ... my PCP put me on Lyrica and that took care of most of my headaches ... still got them laying down too flat so have spent the past 3 plus years sleeping on bed wedges on my back

like Larry said it is trial and error for each of us to find what works for us

[akaltz]

My husband has been suffering from headaches prior to treatment as well. The pain is located in the back of his head and he wakes up with pain every day. Dr. Chang dismissed his claim and said the the headache is NOT one of the typical AN symptoms. My understanding is that the headache may disappear when the tumor is surgically removed but he had CK. He is taking ibuprofen right now, I'm wondering if what the next step in order to get rid of these headaches....?
Thanks,
Anna

[jbbrown15]

I, too, have the positional headaches.  Bending down or standing up can trigger them. 

My neurosurgeons at the Jefferson Hospital for Neuroscience said that my headaches were likely not related to my 2.9 cm AN.  The chief of neurosurgery at Penn was adamant that my headaches were definitely not related.

Months after my radiation treatment, I went to the Jefferson Headache Center.  I was the third AN patient to consult them in as many weeks.  Those neurologists believe that ANs cause headaches.  They also believe that ANs can cause increases in intracranial pressure, which can in turn cause headaches.

It's very frustrating.  Even at related practices, the different doctors see things differently.  I'm being treated for suspected increased intracranial pressure and headaches by the neurologists.  The neurosurgeons will follow the reaction of my tumor.

I hope you find some relief.

Jean