Author Topic: Headache  (Read 954 times)

Colorado Alex

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Headache
« on: January 09, 2020, 05:01:23 pm »
I'm still newly diagnosed and am waiting for my first appointment with the AN team at CUMedical.  All that said...I get bad headaches and as of now I don't know if the AN is to blame or if it is something else.  According to the MRI and my ENT doc the tumor is pressing into or "indents the left aspect of the cerebellum and pons."  It is 2.1x1.9x1.4 cm.  I know that it isn't small but I'm not sure if it is considered large either.

My question... The usual Tylenol, Advil etc does not take care of the headaches.   Anyone have any luck with other types of things?   (I do live in Colorado so...)   

Anyway, any tips or thoughts would be greatly appreciated while I wait for my initial consult.

Thanks.
Diagnosis 12/26/2019  2.1 x 1.9 x 1.4 cm left side AN, hearing 90%
Daily headaches.
Seeking multiple opinions.  Trying to keep it together until I have a plan.

ANSydney

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Re: Headache
« Reply #1 on: January 09, 2020, 08:17:41 pm »
I would consider an 2.1x1.9x1.4 cm AN as medium in size.

With regards to headaches, your position art the time of headaches is a significant factor. That, do you get headaches when you lie down (high intracranial pressure) or when you stand up (low intracranial pressure). Do you have headaches in the morning and they resolved themselves during the day or do you have them late it the day.

MarlaB

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Re: Headache
« Reply #2 on: January 09, 2020, 08:18:25 pm »
Hi Alex..

I live in Washington State....so.....

Be careful with CBD Strains. Watch for those rated and reviewed that cause/help headaches. That being said, I was treated way before 2012. That was after treatment.

I've learned my lesson the hard way!! Check with the Tenders if you are wanting to try that route..I've found them to be very helpful...

Colorado Alex

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Re: Headache
« Reply #3 on: January 10, 2020, 08:02:16 am »
Marla, thanks...I’ll be careful.  If I do anything at all it will be after a lot of research.

Sydney, the headache feels like pressure.   When I really think about it and pay close attention...it starts behind my ear sort of at the base of my skull, then radiates from there to the neck, top of the head, forehead and face.  It generally is dull in the morning and it’s at it’s worse in the afternoon.  Some days are worse than others.  It feels like the pressure builds and builds as the day goes. 

Another thing to talk to the docs about...
« Last Edit: January 10, 2020, 08:38:15 am by Colorado Alex »
Diagnosis 12/26/2019  2.1 x 1.9 x 1.4 cm left side AN, hearing 90%
Daily headaches.
Seeking multiple opinions.  Trying to keep it together until I have a plan.

Patti

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Re: Headache
« Reply #4 on: January 10, 2020, 08:31:17 am »
I have read a lot in the forum that these tumors generally don't cause headaches, but mine sure did and they have generally been resolved since I had the tumor removed.  I had them throughout the day in the same locations you described, but also behind the eye on the affected side. Then I had several occurrences of severe head pain in the morning followed by vomiting. I finally went to a different doctor who ordered an MRI and the rest is history. Good luck to you! Patti
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

chrisabbott

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Re: Headache
« Reply #5 on: January 11, 2020, 11:08:36 am »
I also had pains in my head - I call them that because tell a doctor you have headaches, and they'll say ANs don't cause them.... maybe. not for you!

Mostly was more like pressure and in specific places, and of course only on the AN side.  So to differentiate between regular headaches, I call it pains in my head.  In the last couple months prior to surgery, I could not lay down for more than a few minutes without feeling the pressure, and like something was trying to poke my eye and ear out from the inside.  This subsided after surgery - by the time I was off the steroids, I'd only get mild forms and only when I tried to do too much.
Strange tastes, facial numbness symptoms led to MRI 3/2019: 2.4 x 3.2 x 2.6 cm VS on left side
Left hearing went 4/2019
Translab 06132019:  1.4 x 2.4 x 1.6 cm residual stuck to facial nerve & brain stem
MRI 12122019:  1.6 x 3.2 x 2.3 cm
Translab 01132020:  0.1 x 0.75 x 0.57 + 1.5 x 0.5 cm
GK next

jami

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Re: Headache
« Reply #6 on: January 11, 2020, 05:24:33 pm »
Hi,

(go seahawks for the Wa State comment...)

I have put my headaches into 3 categories.

Head feels like a balloon - this was the summer before i had surgery, and i would have to stop in my tracks because felt that my head would explode. It was always when i was standing / moving.  I was given steroids and it addressed it. (although side effect - sleeplessness and desire to snack nonstop)

Sharp pains here and there - post surgery, these come and go, and i believe they are nerve endings doing their thing. Long story but i had nerve damage in my shoulder ages ago - and the pain of recovery lasted 12+ months, and really hurt. This is my guess of these weird pains.

Stress / Food / Alcohol headaches - I lump these. I used to be able to have 3 glasses of wine a night and feel fine - those days are gone. I can eat very salty food, and count on a headache. This is me making things up, but i think that i am more sensitive to things now. Maybe its age, not AN, but it is different.

Finally, it took me a long time to stop analyzing all my headaches (let me be honest, i still do). I have done spreadsheets, powerpoint, written notebooks. But as i read on the forum, i am thankful that mine are minor compared to others.

My .02.
Jami
-----
5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

Colorado Alex

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Re: Headache
« Reply #7 on: January 11, 2020, 09:02:12 pm »
Thank you all for your comments.   I think the stress of having this stupid thing in my head is possibly contributing to my headaches...but the daily headaches are exhausting and frustrating.  I’m really trying hard to not feel sorry for myself but it’s a bit of a struggle right now.   Right now I don’t really know anything....and until I meet with the docs at CU all I have is worry and constant headaches.  For now I just need to persevere.
Diagnosis 12/26/2019  2.1 x 1.9 x 1.4 cm left side AN, hearing 90%
Daily headaches.
Seeking multiple opinions.  Trying to keep it together until I have a plan.

chrisabbott

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Re: Headache
« Reply #8 on: January 11, 2020, 09:37:05 pm »
Don't feel bad about the possibility that anxiety/fatigue etc. may be making things worse - "its all in your head" has a new meaning when you've been diagnosed with an AN.  I literally said "Sh!t, I was hoping it wasn't just in my head, and it turns out it really is, yet its for real!" when my neurologist was trying to calmly explain what she saw on my MRI. 

You might try figuring out if laying down/resting makes things better or worse (I bought a special pillow to prop me up so I could sleep), also, if it continues to get worse, either call the clinic that you're waiting to see, or the doc that referred you to see if they can help.  Fatigue is definitely part of the deal too - both the tumor itself, and the stress of knowing you have it but not yet having your game plan for dealing with it.  The good news is, chances are you'll get relief for all that - even though my tumor has is growing back, I am down to averaging only a couple times a week where the fatigue hits me, and continuing to improve.
Strange tastes, facial numbness symptoms led to MRI 3/2019: 2.4 x 3.2 x 2.6 cm VS on left side
Left hearing went 4/2019
Translab 06132019:  1.4 x 2.4 x 1.6 cm residual stuck to facial nerve & brain stem
MRI 12122019:  1.6 x 3.2 x 2.3 cm
Translab 01132020:  0.1 x 0.75 x 0.57 + 1.5 x 0.5 cm
GK next