Headaches

[Desiree]

Thank you for your notes.  I had almost the same story as wind6 I think.  Same approach, 3.5 cm, left side, etc.  I've had headaches non stop for the last 5 months.  Sometimes not too bad, sometimes up 6 times a night, neck is immobile and can't open my eyes.  I just had my doc prescribe me Flexeril.  I will take it tonight for the first time.  I will let you know.  I think it shoudl work because the mornings are always the worst, I'm stiff have pain from my next throughout my head.

Does anyone else have the problem where sometimes their neck seizes and they are unable to move head left or right?  I think now it happens mostly when I in working really hard and constantly craning my neck to hear out of my right ear since I am now deaf in my left.  Sometimes just stress brings it on.  Just curious.  I am so happy to have found this site to communicate with others.  It's been so frustrating to have no one that has even heard of it around.  I live in the Cayman Islands (just for another month) but no one hear has had it nor have the docs treated it.  I had my surgery in Arizona at the Mayo Clinic. 

My biggest concern is that with 5 months of headaches and please let me know if you feel the same, I have tons of different types of headaches, and absolutely no rhyme or reason as to why I have them and when.  I can't figure out how to get rid of them because I dont' know why I am havng them. 

Anyway, I'll let you know if the Flexeril works. Thanks for the help.

[luv2teachsped]

desireeu:  I am almost 9 mo post op and still have headaches and a stiff neck. Like you, some are worse than others, I have tried everything, sometimes they work and sometimes they don't.  I have tried another muscle relaxant for my neck without success, however flexeril is stronger, careful; it knocks me right out!Good luck and hopefully someday these headaches will go away!luv2teachsped

[Desiree]

Thanks for the note.  So far flexeril knocks me out too.  At least I'm sleeping more deeply.  I am still having headaches but going to try it at night a little bit longer.  I think sometimes Neuronin helps but I can't seem to remember to take it every 8 hours without fail.  Good luck to you too, I'm hoping by the time a year is up we'll feel like ourselves again.

[luv2teachsped]

Hi- I hate to keep bringing up old discussions, but I am getting very tired of headaches and sore and stiff neck and shoulder.  Anyone find anything that works?  I have been to doctor for a sinus infection and am still on antibiotics, but the headaches still persevere! I take ibiprophen, which sometimes works, but headache always returns if it does work.Thanks for listening to me grumble!  luv2teach

[Janet]

Indomethacin works. (Indocin) It doesn't cure anything but it relieves the back of the head pain, neck stiffness and shoulder pain better than anything else I have tried. It is an anti-inflammatory but seems to be specific to the back of the head and neck than other type anti-inflammatories. You need a prescription for it.

I am enrolled in a Botox study for migraines. The first part of the study is to determine if you fit the criteria to be in the study. (I think AN headaches are different from migraines but I'll see what they think.) I am reporting my headaches everyday for one month. The second part of the study is where 1/2 of the participants receive Boxtox and the other 1/2 receive saline. The third part of the study is where everyone receives Boxtox. My neck really stiffens up and it seems like relaxing the muscles would work. Just turning my head while grocery shopping is enough to trigger it and cause headaches. I'll find out in a week if I will be included or excluded from the study. The thought of jumping through these hoops is nothing compared to putting up with these headaches. I'll keep you posted.

[Windsong]

Janet,

I read with interest your post about a study for headaches using either botox or saline.

If I remember correctly, you mentioned in a post about six months ago that you had your headaches under control... i think it was with an antiiinflammatory? .... did they get a lot worse since then?

You've tried so much... even neurontin and elavil etc.

Did your docs ever expain why you have these headaches? I suppose i am curious as to whether or not the surgery approcah you had (was it retrosigmoid?) can have an effect on that. I don't know much about the surgical procedures... but with yours do they have to retract the brain at all?  i know there are a few types of surgery ops and some do involve brain touching and some don't, but i can't remember which is which right now.

I guess if you are thinking of a botox/saline study you must have tried all kinds of headache remedies including the ones used for migraines.

I am sorry you have reached this point where you have to subject yourself to a study....

i hope you do get this all resolved somehow and become headache free....sounds like you have had a really hard time with them.

as an aside has anyone looked at your neck? perhaps something there is causing your headaches......

Best wishes,
Windsong

[Janet]

Thanks for your interest. It has been a slow trial and error process for sure.

Yes, I did have the R/S approach. I have the surgical report and "Gentle retraction was placed on the cerebellum". The surgeon gave me a video of the surgery, but I only watched about 5 minutes of it.

I did feel my headaches were under control. I was taking Indomethacin 25mg three times a day and Indomethacin 75mg extended release at bedtime along with Trileptol 300mg. This was to get my headaches under control. The problem is that over a long period of time, the use of anti-inflammatories is not good on your stomach or kidneys. So, it was recommended that I try to take as little as I can get away with. I have got it down to 2-3 Indomethacin a day. It works well when I take them but get mild-severe headaches when they wear off. The purpose of the Botox is to eliminate the need for the Indomethacin altogether.

I would really like to fix the problem rather than treat the symptoms. I know there is inflammation but I can't figure out what the problem is. I did go to physical therapy and working on my neck did help. I can see the relationship between how I hold my head and headaches. I use a warm pack on my neck and that helps too. I can pinpoint where my pain originates from which are always on one side of my head and the opposite side of my surgery.  I hope that recording my headaches everyday will give me a tool to show the doctors what is going on.  I have to take it step by step to find the right MD to treat the right problem.  Whew!  I know that the answer is somewhere!

[luv2teachsped]

Janet: Like you, I thought I had miy headaches under control too.  Mine also frequently start in the back of my head and neck and can be triggered just by turning my neck. My neck and shoulder were sore before I had the surgery, but it was also before we knew about the AN.  I try doing stretches and taking Motrin, but I also don't want to kill my stomach.  I would like to find out what's causing them and get rid of them.  Night is usually the worst time. I thought I would get my eyes tested and eliminate one more reason.  Good luck on your study, I'd like to keep up on how things are going for you!  luv2teachsped

[Janet]

Hi All,

I mentioned in an earlier post about a Botox study. I just completed Phase I where you record your headaches for a month. I am now moving on to Phase II which is 1/2 of the participants receive Boxtox and the other 1/2 receive Saline. This phase takes 6 months so it might be a while before I have some useful info to pass on to you.

[Battyp]

I have not read everyones reply but did read an article today on a patient who had an surgery and got relief from a local doctor here.  I have seen him personally for migraine type headaches I had from a car accident.  I suffered from the headaches for years and after treatment with him I was symptom free until the darn AN decided to show itself.  His name is Dr. Harold Cordner and he's in Sebastian Fl.  I thankfully haven't started with headaces since my surgery and if I did I'd be right back to his office.

[Captain Deb]

Hey Y'all--
So happy to find this site--I was on an AN listserve that I had to quit because of all the emails all the time.

I had my 2.2 cm AN removed via Middle Fossa at House in Jan of 03 and am still stuggling with debilitating headaches that have been diagnosed as migraines because of their one-sidedness and throbbing characteristics.  When I get one of these I can barely move or speak the pain is so bad.
I also get a tension/pressure type headache about eveyday.  The triggers for these come mostly from fatigue and exertion, but occaisionally I'll just wake up with it.

I've been on a number of anti-seizure meds and also anti-depressants for 3 years off and on, and the frequency and duration of these buggers is slowly diminishing.
 
 I have been using Zomig nasal spray for the really bad ones which works pretty good if I take it in time. Either it totally aborts the headache, especially if I go lay down, or it shortens it to 4 hours instead of 12. I am fortunate enough to be in a finacial position where my husband takes up most of the slack, but I do (did) have a successful carreer as a painter. I did apply for disability benefits 2 years ago and have been turned down twice, but now have a lawyer working on it for me. I have resumed my painting on a part time basis, but about 2 hours into a session, my head starts acting up--pressure and one-sided pain on the AN side and I find one-half a vicodin usually takes care of it.

 I really have to watch taking this nartcotic beacause it does cause rebound headaches.  Problem is I don't know if I'm getting a rebound headache or a migraine.

My theory on this whole thing after doing a bunch of reading on migraines is this:  I have hereditary migraines--not bad enough to seek medical help before my AN but bad enough to have to lay down for a bit--maybe 3-4 times a year.  The trauma of the surgery kicked my migraine mechanism into overdrive. 

The surgery also traumatized and damaged muscles and tendons in my neck, which is where most of the pain starts, what they call a "prodrome." My first break came from a really good physical therapist who worked on my neck 2-3 times a week for several months. This allowed me to paint again for the first time in 2 and a half years. I am still getting the migraines about twice a month, but I'm exercising again at our local wellness center 2-3 times a week which is huge progress for me.

Anyway that's my story and I'm sticking to it!  I empathize with all of you out there stuggling with these headaches. Before all this I was an avid hiker, sailor, windsurfer and runner and now, well I feel like I went to sleep in Jan of 03 and woke up in someone else's body and it really p's me off sometimes to have been dealt such a bad hand--you know what I mean.
Thanks for reading.
Deborah

[ppearl214]

Deborah,

Please allow me to be one of the first to say welcome.. and thank you for sharing your AN (as well as personal) history with us.  Like you, I've been so active in life, but this AN has really thrown me off guard (as I'm sure many here also share the same).  I have checked into House Clinic and spoke to Dr. Brackmann. He recommended middle fossa to me as well.  For me, I think I'm leaning more towards Cyberknife at this point based on numerous conversations and having researched and spoken to many about their procedures and outcomes.

I have had migraines for years. Gawd, the ever-loving PMS migraines have been the worst for me over the years. Then, last year, they found this stoopid thing in my head (as well as Chiari I Malformation AND.. the recent MRI found a Choroidal cyst smack dab in the middle of my brain... fun, fun).  My migraines have enhanced over the past year... so "blinding". I try to describe to my dr's and note the PMS migraines, then multiply it by 10.    ER visits with 50 mg Demerol shots.. heck, I drive home from the ER. Doesn't even touch them. Right now, my primary has me on 100 mg Imitrex PLUS 50 mg Tramadol (Ultram). Even told my eye dr yesterday about that mix and he says "so, it makes you a bit loopy?"  Ain't that the truth.  The headaches have been, for me, the worst out of all my AN symptoms.

I would like to say thanks for sharing this with me.. and with us. I appreciate hearing everyone's story as I learn from it, it helps me in making final decisions for myself (yes, it's decision time for me and hope to have it made by this time next week) and so glad you "stuck by it".

Again, welcome... and you're in good company here.

Phyllis

[Battyp]

I think I've done most of the meds here ultram, zomig, imitrex, ultram, botox and ended up mixing the meds to get relief.  I feel for everyones headache pains!  I actually did 4 surgeries with Dr. Cordners office to get relief.  I'm waving my magic headache fairy around very quickly to eliminate all the headache suffering!! 

[ppearl214]

everyone is different sunshine... some have them, some don't and hoping batty's fairy wand continues to do the trick for you! :)  Count yourself as fortunate should you continue not to have them!

Phyllis

[Battyp]

Sunshine I'm thinking if you haven't had any you should be safe esp with the wand flying ever so fast.  I had them before surgery and have been symptom free since.  I think I suffered enough with headaches over the years I'm getting some slack thrown my way now    Actually maybe it's because I have bigger problems?  lol