Author Topic: pre treatment headaches  (Read 5332 times)


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pre treatment headaches
« on: January 01, 2010, 09:36:50 pm »
I wanted to ask if anyone had headaches before treatment. I have seen alot about headaches after treatment. Here is alittle of my background with headaches.

I all started when I was 11 years old and in the 6th grade, I got my first migraine. I am now 37 and have been suffering from them all this time, I would have a migraine about 5 out of 7 days a week for years. I was not till I was 28 that I found a doctor that would listen to me and was willing to try and treat me for these headaches. We tried alot of diferent medications untill we found one that worked. I now take medication daily to prevent the headaches. I am now getting about 5 migraines per year!!!!!!!!!! YAH!!!! My migraines are called "classic migreaine",before getting the headache I have a visiual aura , then numness on one side of my body then the headache on the optosite side of my head as the numness on my body. When I get a headache I take a pain med that is a combo of asprin and caffene. It is old school meds but they work for me. (belive me I have tried everything).

Now that you know my background on headaches, this is what is happening now. About 8 mons ago I stared getting headaches on the left side of my head only. ( my AN is on the right). These headaches feel like my migraines but I do not get the auras or numness. I just get the pain. Tylonol and Ibuprofen do not even touch them, but if I take my mirgraine pain meds I can get them to go away sometimes. Most of the time these headaches last 3-4 days. And come on about once a week.  I have told my Dr. this but he thinks the headache is not related to the AN, that I am just getting a different kind of migraine. The Dr. I saw years ago that helped me with the migraine meds has retired. Do any of you have an opition? I would love hear your experiences.

Sorry its so long

W & W as of 01/27/2010 keeping my fingers crossed for the next 6 months
4mm AN-right side


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Re: pre treatment headaches
« Reply #1 on: January 03, 2010, 10:06:18 am »
Hi Ginger,

Since my dx back in March of 08, I too experience headaches, and like you, my doctor told me that they are not related to my AN.  I don't believe him and I do believe that they are related.  I also at times have pain on the right side of my head (which is my AN side)  I take tylenol.  I guess what I have learned through this experience is that I need to listen to what my body is telling me.  Of course I trust my doctor (Dr. McKenna at the Boston, Eye and Ear), but only I know myself. 

Let me know how your headaches are going.

Best wishes,

LisaP ;D
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W


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Re: pre treatment headaches
« Reply #2 on: January 03, 2010, 07:42:02 pm »

I have suffered from migraines since I was 13.  Actually last week I had two auras within 30 minutes of each other.  Once the pain hit I was toast.  Pain, vomiting and 36 hrs of hell.  I almost went to the ER.  I wake up every morning with a headache, even when I was on gabapentin.  Some days Excedrin Migraine will take the edge off and some days T-3's will not touch it.  The worst headache I ever experienced in my life was 3 yrs and 4 mths, when I woke up from surgery. 

I had a nerve block 9 days before Christmas.  It took about 5 days before I notice some relief, and tonight I told my husband I feel that the block has worn off.  Will I do it again?  YES!!!  The nerve block injections are up there in the pain department, but to have relief makes it worth while.  There are a few of us who suffer greatly from headaches and some, once they've recovered from surgery never have a headache again.  Read all of the headache threads for valuable information.  I found this forum a yr after I had surgery.  I think the saying "misery loves company" is a fact.  Reading what Capt Deb, Janet, Soundy and a few others have gone through has helped me immensely....I'm not alone and neither are you!

Take care of yourself,
Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games


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Re: pre treatment headaches
« Reply #3 on: January 03, 2010, 08:22:38 pm »
I always had horrible headaches, from jr high-high school until I had my AN removed.  I wouldn't really consider them migraines because I didn't have the auras/numbness.  I have a REALLY high tolerance for pain (except for having babies!! LOL!) and was pretty much brought up that you just deal with/live with the pain.  I realize now what doozies I really had and how much more pleasant life is without that constant pain.  As soon as I recovered from my surgery, they stopped happening.  It wasn't until I found this Forum 2 years ago (I had surgery 14 years ago when I was 25) that I found out that everyones' headaches DON'T go away just because they have brain surgery.  I have maybe 1/month now & it is just the run of the mill headache that is very manageable.

Good luck to you!

Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
Great life!


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Re: pre treatment headaches
« Reply #4 on: January 04, 2010, 11:17:05 pm »
thank you for your great responses. I know headaches are different for everyone, but this new headache I am haveing I think my Dr. my be wrong and it is the AN. But then I am not a Dr. But this is how I feel about my self. I to have found my self in the ER with a migraine and they still can not give me much relef. I think headaches are the worst kind of pain, I had a c-cection with both of my girls and that was a breeze to recover from and I felt like there was not much pain at all. I only took regular tylonal after the sergury for two days. And living with headaches is just so miserable. Thanks for the support.

W & W as of 01/27/2010 keeping my fingers crossed for the next 6 months
4mm AN-right side


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Re: pre treatment headaches
« Reply #5 on: January 07, 2010, 02:05:09 pm »
I know this is late Ginger, but I just saw this..  I remember the year leading up to diagnosis and I had 4 sinus infections and seemed to remember taking Ibuprofen for headaches often.  Hindsight being 20/20, I did have quite a bit of issues with headaches before treatment..  Since?  I rarely take anything..  After my whole diamox ordeal, that is.. ugh!

Your migraines could very well be AN-related.  What are your plans for treatment (if any)?

I can certainly sympathize with you in that living with debilatating headaches often is horrible..  Perhaps if you had treatment, they might go away or at least reduce?  Just a thought.. I ain't no doctor by any stretch..

Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:

"I must be having fun all wrong!"  - Roger Creager


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Re: pre treatment headaches
« Reply #6 on: January 07, 2010, 04:46:06 pm »
Headaches were actually my only real AN symptom.. well, after it was diagnosed we noticed "hey, my face is a little droopy on that side and I am a little dizzy", but before that I had near daily headaches for months. I was told that my headaches were AN related, because it was pushing on my brainstem. I had migraines years ago, and they weren't as bad as those, but no where near comfortable, either. Tylenol and caffeine (yey Coke!) helped some. Now, 15 weeks postop, the headaches are still there but at this point I just kind of tough it out. Last time I was at the dr's they said it was normal to still have headaches at that point (6 weeks postop). And, before surgery, my surgeon said I had a 1:3 chance of chronic migraines. Woohoo.
25 year old OBGYN nurse, wife, mother of two
5.5cm x 3.1cm left side AN removed via retrosigmoid 9/09 @ Hopkins
SSD, Tinnitus, Chronic Migraines, Facial paralysis (improving!)
Resolved - Left sided weakness, Cognitive issues
Gold weight, upper and lower punctal plugs, tarsorrhaphy

Mei Mei

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Re: pre treatment headaches
« Reply #7 on: January 07, 2010, 07:09:46 pm »
I too suffered from horrible migraines and took the spring triggered self injectible shots for them.   So many a day that Caremark Prescription Service gave my doctor a call about my overuse of the Imitrix.  I went to  a Physiatrist   (a specialist in Physical Medicine) and she prescribed Topamax which is meant to prevent migraines.  That in combination with Celebrex for the Prevention of Myofascial pain or Fibromyalgia and I've been pain free and migraine free.  This is incredible because I suffrered all through high school, college, grad school and through my 40s.   I ended up finding out I had endometriosis as well.  Didn't find that out till I was 42 but never had any problem getting pregnant.   Anyway  try the Celebrex in combo with the changed my life completely!!!
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh


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Re: pre treatment headaches
« Reply #8 on: January 07, 2010, 09:41:40 pm »
Wow thanks guys!! you all are great. As for treatment I am leaning twards CK, I really dont want to have surgery. I have an appointment on the 27th of this month to talk to my dr about this. THANK YOU FOR ALL YOUR GREAT RESPONSES.
W & W as of 01/27/2010 keeping my fingers crossed for the next 6 months
4mm AN-right side


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Re: pre treatment headaches
« Reply #9 on: March 07, 2010, 02:50:45 pm »
Hi Ginger!  You are not alone.  I also have pre-treatment headaches, always on the right side (the same side as the AN).  In fact, I have one now :)

My right-sided headaches first started a few months before I was diagnosed with my AN.  I didn't know what to make of them, because I never had chronic headaches before that time.  Once I was diagnosed in November 2008, I guessed that the AN was causing them even though my neurotologist told me they were probably not related.

Take care,
watch & wait since 11-4-08


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Re: pre treatment headaches
« Reply #10 on: November 12, 2010, 12:43:17 am »
I started reporting to my GP about headaches when I was around 16, insomnia started around 18/19, I also had numbness and tingling on the face, arms and legs. I was seen by a neurologist and DX as psychosomatic....until I was 23 and finally treat I was continually given pain killers and sleeping pills, I was on high doses of crap and had headaches basically every day......but I proved them wrong and at 23, after another doctor finally listened to me, I gave birth to a very large AN. My headaches since the surgery are just as bad but different. When doctor say AN's don't 'cause headaches I think they should give their head a shake.....a space occupying thing in ones head is going to 'cause pain, even if it's only the pain caused by it pressuring another things!
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)