Headaches

I am curious of those who have had removal still have headaches?

I have headaches daily and nothing works to rid them. I also get waves of spasms from my scar and I also can not have anyone touching my hair it will bring on the headache.

I am so tired of them I wish their was a fix for the headaches but their isnt.

I am blessed with miniumal side effects from the AVM but tired of headaches after 3 1/2 years.

I have tired so many medicines and natural redemies. Anyone else have any tips that have worked or meds to inquiry about? thanks

Kat

My AVM was removed nearly 4 years ago as well and I too still get headaches quite frequently. Unfortunately I don’t really have any solutions… Although for me I notice there are times where I get a lot, and times where I get hardly any. Maybe there are other reason besides our AVMs that help trigger them.

I did a search of headaches for you

http://www.avmsurvivors.org/main/search/search?q=headaches

I found this blog very informative...

http://www.avmsurvivors.org/profiles/blogs/migraine-1


Mine also come & go as in how server they are but I always feel the pain there. Thanks for sharing.


Chris said:

My AVM was removed nearly 4 years ago as well and I too still get headaches quite frequently. Unfortunately I don’t really have any solutions… Although for me I notice there are times where I get a lot, and times where I get hardly any. Maybe there are other reason besides our AVMs that help trigger them.

Before this AVM stuff (had a craniotomy about 8 months ago), I got "eye strain" headaches behind my left eye. It was usually because I hadn't been wearing my glasses, so that was an easy fix: put on my glasses and it went away fairly quickly. I never really got bad headaches or maybe I have a high tolerance for pain. So this whole headache thing is relatively new to me, I'm getting them more frequently now as the months go by. Tylenol usually does the trick (so far). I have one Vicodin pill I'm saving in case I get a doozy and nothing works, I kind of wish I could get more, it seems like everybody and their brother is able to get their hot little hands on Vicodin pretty easy, yet little old me who had brain surgery can't. I'm just not used to getting headaches so frequently and accompanied with migraine auras, spots & confusion & dizziness. There's a smell of burning rubber I get that occurs right before a headache. I don't know if it's a real smell or it's all in my head. Weirdness.

I'm also blessed with minimal side effects from it all except these flippin headaches. Good luck to us all!!


My headaches started after the survey. They are intense at times with many issues. I wish tynenol would be sufficient but since day one I have been on heavy meds. Vicidon is in my med regime but I only use when needed. I am on propapnol for pain daily. I have tried antidepressants for pain too, but they have awful side effects for me. I have also tried natural remedies such as vitamins & teas. I’m sorry to hear your worsening it’s awful having these headaches. I have learned to deal though,hugs.


Nicole R said:

Before this AVM stuff (had a craniotomy about 8 months ago), I got “eye strain” headaches behind my left eye. It was usually because I hadn’t been wearing my glasses, so that was an easy fix: put on my glasses and it went away fairly quickly. I never really got bad headaches or maybe I have a high tolerance for pain. So this whole headache thing is relatively new to me, I’m getting them more frequently now as the months go by. Tylenol usually does the trick (so far). I have one Vicodin pill I’m saving in case I get a doozy and nothing works, I kind of wish I could get more, it seems like everybody and their brother is able to get their hot little hands on Vicodin pretty easy, yet little old me who had brain surgery can’t. I’m just not used to getting headaches so frequently and accompanied with migraine auras, spots & confusion & dizziness. There’s a smell of burning rubber I get that occurs right before a headache. I don’t know if it’s a real smell or it’s all in my head. Weirdness.

I’m also blessed with minimal side effects from it all except these flippin headaches. Good luck to us all!!

Hi-I am new to this-from just signing up-but my bursted aneurysm and AVM happened in 1999. I do have headaches too, and have a medicine regimin that works for me- the antidepressants at night because they make one tired and then for the occipital neuralgia i take butalbital-it contains caffeine so i am able to work and still be accurate at my job. My migraines used to be every 3-4 weeks, but have been every week lately.....its hit or miss -can never really tell what exacerbates them (makes them worse)...but i trust God for each day and some....are better than others... hope this

helps......... :)

My daughter had her AVM in August 2010 with Gamma Knife Radiation in Oct. She was having a lot of headaches and taking a lot of tylenol and then in February, they told her they thought they were rebound headaches so no more pain pills and just the preventive migraine pills. She has been thru different doese of Elavil, Topamax, Celexa, and is now trying Depakote and Verapamil. Nothing has worked so far- she is frquently dizzy and has nausea/vomitting as well. Ane the noise really bothers her. She is only 14 and this has been hard on her- I can barely get her to school- just too noisy there. And I don’t know how to help her deal with these headaches. I am scared she will just have to learn to live with them, kind of like you guys seem to be doing. I can’t wait for summer vacation so we dont’ have to worry about the homework at least. She also has minimal side effects from the AVM except the headaches. We are now seeing a psychologist for relaxation techniques and the doctor will now let her take vicodin 2-3 times a week, but they really aren’t helping. I wish there was a better treatment out there for all of you and your headaches!!

Unfortunately I too get horrific headaches…going for a mri, mra, mrv to check how things are going…I meditate and practice yoga which help…medications? I am a nurse and all taht help make me too tired so I work through them…I wish there was something else but in spite of everything, i am thankful it is only a deficit. Mare

thanks for the response, I went for another MRA today. They want to make sure there is still nothing there again.

To see why there are headaches still. I dont think they will find anything but who knows. After close to 4 years of being AVM free I think I will be living with the headaches. I just try to do my best to cope and use preventive meds and only strong meds when needed. No tynenol or IB as they can make it worse for me. good luck to all who deal with this as well.

Hi kat, I also had my avm removed just over 3 1/2 years ago. I aswell as you get daily headaches &migraines which at times are debilitating. I can offer no solutions because I have none myself. I wonder like you, do I have to live with these for the rest of my life? Best wishes hope you find some relief somehow. Shane

I have had headaches for 18 months. the only thing that helps is caffeine. After having a seizure last week, they told me no caffeine at all cause it can trigger seizures :frowning: My neurosurgeon insists there is no connection between the headaches and the surgery. This pisses me the fuck off cause I never had a headache before the bleed and never didn’t have a headache after the bleed. i’m not a neurosurgeon but wtf?!?!?!