headache and frustration

[kimberly]

Hi gang:)

Sorry to hear that so many of you are having headaches too!  This was one small thing the pamplets and neurosurgeons didn't really touch on as much as they should prior to the surgery!   I think the one brochure I had talked more about the loss of taste afterwards than the headache issue.   I guess it would not have mattered, the thing still needed to come out

I too started getting headaches, probably about 3 months ago.  I was taking about 8 - 10 advil per day which apparently was too much, so then my neurosurgeon prescribed elavil (an antidepressent that supposedly works for headaches) it made me gain a pound a week and also made me feel really angry and sad.  It sort of seems like they think I'm making it up when I call and say I have headaches every day, about 8 times a day.  Sometimes they are on the top of my head and feel like a really bad ice cream headache x 5. Those can be brought on by something really simple (coughing,jumping up off the floor and upon landing,  sneezing 3 times in a row, laughing a lot and even orgasm!)   Other times its behind my eye and feels like a sinus headache that went into my eyes (those are the kind that make me vomit)  and other times it starts at my neck along the incision and shots of quick sharp pains rush thru my head.  I wake up with a headache every morning and start my day off with 3 advil and a hot hot shower, that usually helps until about noon. 

The place that I go for my regular doctor's visits is made up of interns with one attending physician on staff.  No one there has ever heard of an acoustic neuroma and they have no clue what to do about any problem related to it.  One time I did get to see the attending physician and she said "I've been here 27 years and have only seen one other person who had an acoustic neuroma."  I was last prescribed  topamax, 25 mg which I have started taking -  1 every night a few nights ago.  So far I can not really tell that much of a difference. That physician said something about barometric pressure and headaches.  I did go to the dentist yesterday and he said I've been grinding my teeth at night and probably have headaches from TMJ. Trying to find solutions to the various headaches feels like a crap shoot to me.  I know it's only been 6 months since surgery  and some people are dealing with it for years and years but I am at the point where I just am saying to myself "quit taking the medications and realize this is how life is going to be" I feel pretty frustrated with the neurosurgeon because they don't seem to really believe me.  I am not a person who likes  medicating every emotion or pain and it seems like my physician (not neurosurgeon) wants to give me a medicine for every thing and they all have so many side effects then when you do have a headache or blurred vision or vertigo or any symptom , you don't really know any more if it's from a new medication or a result of the surgery.

I did have my 6 month MRI last night but my appointment with my neurosurgeon isnt until next month.  My plan was to take a peek at the film that I have to hand carry over there.  So when I left they handed me a CD.  Darn it!!!
Has anyone ever looked at their own CD?  Can you tell by looking at it yourself if there is anything growing back or anything unusual? 

I hope all of you are finding answers for your headaches and ways to cope and deal with the constant frustration of having them and on going issues resulting from your ANs. 

If I am not here to post again, have a happy Thanksgiving!!

Kimberly
 

[PatSal]

Hi Kimberly,
I too was having headaches every day for over a month and was popping tylenol. I am on topamax and effexor xr for my headaches. I had recently reduced my effexor due to my blood pressure rising. Then I read effexor caused weight gain and lowered it some more.  My neurologist thought I would be ok at this dosage. Then the headaches started. the neurologist thought it was allergies. I went in for my MRI and everything was good. It was my nine month checkup.  I was sent for an MRI of the neck about the headaches.  I then returned to my neurologist (who had been called out for lectures) and saw his associate. When I told him about the headaches, and how much tylenol I was taking, He was upset.  Said I was having rebound headaches and prescribed Fiornal.  At first, I was taking the medicine twice a day (two capsules), one capsule wouldn't help.  Then I started thinking, the fill-in neurologist did not address the headache to start.  So I upped my effexor one notch and guess what, the headaches stopped.
You need to give the topax time, but you may need to take more.  I take 50 mg. twice a day. Talk to your dr.  Find a doctor who specializes in migraines.  Even then trust yourself - you know your own body.  Good Luck. Pat

[Captain Deb]

Kimberly,
It took me 3 1/2 years to find a good headache neurologist--I had my surgery at House so my neurosurgeon was not a great help with my headaches either--they are not headache specialists!  My suggestion is to find a headache clinic or a headache neurologist who has seen a few post-craniotomy headahces in his lifetime.  The Topamax has worked very well for me but it takes a few months to kick in.  I also take 1200 mgs of Neurontin (gabapentin) a day and have nerve blocks every month at a pain clinic.  The topamax has a side effect of makeing be feel stupid like I have ADD or something, but it beats having headaches all the time.

You'll find a lot of help here on the forum. too

Hugs,

Capt Deb

[kimberly]

Hi Pat and Deb,

Thank you both for responding.  3 and a half years , WOW Deb, how in the world do you cope with the frustration of it?  I know I have to be more patient.  I thought I'd go in and get the AN removed and then be on my merry way back into life.  Deb, I'm glad that you seem to have found a solution but sorry it took so darn long!  Pat, I hope the medication changes work out for you.

Again thanks for reading my venting and responding.  I think my friends probably are maxed out on my complaining about headaches


Kimberly

[klangel]

hey kimberly, im sorry to hear of your constant headaches. i know how much they can affect your life especially your mood as i have had one 24/7 for 3 1/2 years now. and yes i find it strange at some of the trigers that make them worse. ive actually got a new location now going silmutaneously with the old one i used to just always have the one thats comparable to a sinus headache although no medication would alleveiate it. and i laugh and call myself the human barometer because i always know when the weather is doing something!but now for about the last 3 months i have the worst pain in the bottom left part of my skull right by where it connects to my neck and if i get stressed badly or like you said have an intense orgasm or even shout too loud it becomes so painful its debilitating. most doctors dont know anything about an. and youre right about the tiny 3 sentence pamphlet. i think i still have mine somewhere! ha what a joke. does your eyeball hurt too like a bad ache as if it might explode? i have gone to an eye specialist due to multiple eye issues.(they didnt take care of mine properly in the hospital and now i have chronic corneal erosion ) but she doesnt have a clue about the aching. i hope that someday the pain will go away but until now no drugs ive tried have ever helped. am looking into marinol because prescription marajuana is not leagal here. real shameful because it is the only thing to take off the edge when it gets real bad. also, do your headaches make you very nauseous? i also see yellow circles on everythingthe eye doc claims its occular migraine but i never had that until after surgery. well good luck finding relief. if you do let me know. thanks

[stoneaxe]

I have a constant low level headache that I just live with. Found different drugs made me stupid and work impossible, neurontin especially. My current low level dosage (75 mg) of topomax is just enough to keep it at a level where I can ignore it without making me feel too slow, but it is always there. Feels like I have a band tightened around my head from left ear to upper right side of my head, but at least at this level its more pressure than pain. Occasionally they flare up and get much worse but I'm trying to avoid drugs if possible.

[JudyT]

Hi all.....I am currently suffering from headache/nausea that started yesterday and has increased to almost the worst ever. I am very tired from no rest and feel tears of frustration are not far off. This is sooooo upsetting to me I don't get it. I haven't done anything out of the ordinary to spark this. My balance is way off....great difficulty being upright.....dizzy or something. Sitting and laying down is best. Does anyone have a clue? Sometimes sheer willpower will get me up and running.....guess I'd better work on it.  Despair takes you knowhere.
Thanks everybody for being here! I feel better now that I have vented my frustrations......I hope not at your expense.

Judy

[Jim Scott]

Judy:

Never feel any need to apologize for venting, here.  This is a support site for AN patients and venting is always allowed.  We may not all have the exact same symptoms or post-op issues but we can easily understand the frustrations and angst you're going through right now.   I can't offer you a real solution to your current problems but I can offer you the assurance that you'll be in my prayers and those of many others, whether or not they choose to post a message telling you so.   Meanwhile, please accept my wishes for a rapid resolution of your current medical issues. 

Jim

[JudyT]

Thanks Jim..........I have such a blessed life....a happy life.....but this drags me down soooooo far. I am moving into a beautiful new home in a few weeks (down sizing from this TO BIG home) in a gated community and I really am excited about it. New friends......social activities and so on. My son and his family are moving in here so I will still be coming back often. I am confident in my decision as I am a widow and I wanted to do this while it was a choice not a must. I just don't understand these issues that preclude me from fully enjoying this transition and really participating in the move itself. I am using all my knowledge to overcome what's going on in my head but just don't have any luck. At least I am not one of the younger members that have so much responsibility for their families etc. I have all that I need and want. financially independent. loved very much and really am blessed with all things while so many are suffering in this difficult economy. Why in the world would I be depressed.......even angry at times at my dilema? This fatigue.....headache .......imbalance are just impossible to understand. Thank you and others for the much needed prayers........I pray too for all who come here.
Sincerely appreciated..........Judy

[windy]

I completely relate to everyone who has headaches, post surgery or post radiation.  I have headaches almost daily for months now since I had GK.  I was told by my GK doctor is was not attributed to the GK treatment, but I am convinced it certainly is attributable.  I certainly know I did not have odd head pain prior to treatment.  What else would it be attributable to really?  I have had some migraines in past years, but once I had GK, then came a different type of headache.  They are not like a migraine.  The pain is in strange places, like at the top of my head, especially on the AN side.  Also, if they are really bad, the pain is in my head, in the ear area, and down into my neck.  I also have the eye pain quite a bit.  The pain is usually located on the right AN side, but is sometimes on the other side, as well.  Also, I feel head pain when I am in extreme cold or heat.  I tell my family it is like my head is a thermometer.  It is creepy!  I also think they are affected by the barometric pressure.  They are not unbearable, but they are wearing.

I, too, eat as soon as I get up in the morning, pop two Advil right after breakfast, and take a steamy shower to try and get relief.  I wonder if this is the way it will always be from now on.  I have noticed if I get upset or yell (even calling out loudly to someone in another room), my head my hurt for hours.

I, too, have been told by my ENT physician that it was TMJ pain.  It is not TMJ.  When I used to have TMJ flares years ago, I had trouble closing my mouth and this is certainly not the case.  I was told by my neurologist it was just muscle tension.  I believe they are both way off course.  The ENT physician said to take Motrin and the neurologist offered nothing in the way of medicine.  Neither physician has had any experience with this type tumor.

When I read through your post, I see how similar my pain sounds to others.  If it were not for this board, I would think I was the only person who ever had head pain, post AN treatment!  I don't wish this on anyone, but I am glad to find validation of certain symptoms.  I wish you all the best in the treatment of pain and hopefully it will eventually leave us all!  Take care!

[Nancy Drew]

What I know about my own headaches goes like this......I had migraines about 5 times a week for over five years.  This is all before the AN.  Went from doc to doc and then finally my GYN said they were hormonal.  I had tried all of the migraine meds with no success except with Midrin.  Midrin helped take the edge off, but it didn't make the migraines occur any less.  I ended up having a complete hysterectomy, and then with hormone replacement about 80% of my headaches went away.  With the remaining 20% (due to weather changes, allergies, stress) I was able to control the headaches with Midrin.  All was going well until they quit making the name brand Midrin.  I am one of those freaky people who got no relief from the generic.  Post GK I have been having more headaches crop up, though not necessarily migraines.  My doc gave me a small supply of vicodin (last thing I need is an addiction), and I use them as needed when a tylenol or advil doesn't work.  And, something to consider is that rebound headaches can occur with repeated use of OTC pain relievers such as tylenol and advil.  If you've been taking them for a while and get some relief only to have the headache come back a few hours later, you might want to think rebound.  I have heard that when coming off of frequent use of NSAIDs, the headaches can get worse before they get better.  Just some thoughts..........BUT, we can all agree that the headaches are just a pain in the you know what   Nancy 

[MamaGina]

Me too!!!  I'm frustrated!  I was on topamax 100 mg 2x/day-made me stupid too, Capt. Deb!  It's one of the side effects.  I actually tried stimulants, but they cause headaches and didn't really work.  I really crashed afterward.  The Topamax did help, though.  My migraines decreased from 4x/month to about 1-2x/month.  Then I took Relpax (a tryptan, like Imitrex) for breakthrough migraines.  My other headaches were there, but more tolerable than migraines.  I was also taking tons of Ibuprofen at first.  That wrecked my stomach! I have learned to take frequent rest periods, avoid long drives, prolonged movement, etc.  I am submitting to my disabilities better, rather than living in denial.  It makes it worse for me when I try to be superwoman (4 kids, FT job, home...).  Not being superwoman has caused some conflict in my marriage, however.  After working all day, I simply cannot come home and cook a big dinner and clean and do laundry.  Thus, I've decided to give up working.