bad bad headaches.....help

[FlossKaos]

Hi all, I am hoping that someone can help, or at least have some ideas to help. I had an AN removed almost 7 months ago and I developed these rotten headaches maybe about 2 months after surgery, I also developed Bell's Palsy around this time as well, thankfully that has almost fixed it's self but left me with constant pain in my face.  I feel like I jingle when I walk cause of all the different meds!!  not to mention a pin cusion from the injections.  My GP and Neuro think I have Epilepsy so there is lots of meds that I can't take because they can cause fits and don't go to well with the anti-epileptic meds.  My GP has started me on Tregretol to see if that has any effect on the headaches and also strong anti-inflamitories and Endone and Paracetamol throughout the day.
I am hoping that someone might have some great idea that i can suggest to the GP to help if this isn't successful.  Thanks all.

[Janet]

FlossKaos,

If you go to the search box towards the top left and type in headache you will find past postings on headaches. You might want to search Trigeminal Neuralgia since your pain is facial. There has been a lot of recent discussion on TN.

There doesn't seem to be many answers as to what causes them only speculation. Mine started 2 weeks post op. When you say bad bad headaches, I know what you mean. Mine are towards the back of my head and are triggered by certain movements. My neck gets stiff as well.

This is what works the best for me after trying different medications prescribed by a headache neurologist. Indomethacin (anti-inflammatory) and Botox injections in the head, neck and shoulders. I think and advantage to both of these is they are not addicting and they don't alter your mind or cause fatigue. Indomethacin is cheap. Botox injections last 3 months. The disadvantage is that Botox is not approved for headaches so insurance companies probably won't cover it. (I am in a study so I get mine free for a year.) Indomethacin can be hard on your stomach. I worry about the effect it will have on my kidneys but I take it with lots of water and the lowest dose I can get away with. (25mgs 2x/day).

Other people on this site have had success with other types of treatments such as anti-seizure medications and trigger point injections. Most eventually end up going to headache neurologists or pain clinics for help.

I hope you find some useful info on this site. I was really helpful to me when I first went looking for relief.

Does your doctor think you are epileptic because of the headaches?

Janet

[FlossKaos]

Thank you for the information Janet I will have a look round the site, but I'm sure you know what its like, reading and computers is not the best thing when the old head is bad!!  I have pain in the back of my head around the scar but the headache really is at the front on the side I had the AN removed.  My neck and shoulders are the same as well, stiff and sore.  The medication that Im on as well is not good on the kidneys and liver and that is something that worries me too, but I think if you have regular liver and kidney function blood tests they should (so they say) pick up any problems before anything serious. 

I live in Australia, and of course there are certain things we are unable to get that are available in the US.  And I think that Botox is really expensive, but I am beginning to think that anything is worth a try.  I have had corticosteroid injections and local injections in my head to help settle the nerves, they didnt really have much of an effect. 

I have suffered from migranes for about 9 years, which is a long time when you are only 26!! So I have seen plently of neurologists in the past.  This is going to sound strange but I have not actually had a migrane since the surgery, though the pain of the headaches I have now is just as bad but it is a different pain and I'm not thowing up!!  My GP has suggested a pain management specialist, so i think that will be the next step for me.  Because, as I'm sure you know, it wrecks your life, can't sleep, can't stay awake, can't work etc etc.  Im so over it!!

As for being epileptic, I had seizures before the surgery, this is how they found the AN (you would have thought all the neurologist would have pick it up in the past cause it was slow growing and had been there for years).  I have had 2 EEG's both showing nothing wrong but they think it might be frontal lobe epilepcy which doesn't show up on an EEG, but I don't know.  I think it was caused by the tumour but who knows.  I need to be on the medication just in case.

So the GP and Neurologist are playing around with different epileptic meds to see if that will be any help.

How long ago was you AN removed and was it by surgery?

Thanks for you help Janet

Fleur

[Janet]

Fleur,

I had retrosigmoid surgery 4/2006 and had migraines prior to surgery. These became severe after surgery. My pain is on the opposite side from my surgery. If you Google hemicrania continua you'll find a good description of the type of headache.

It sounds like you are getting some of the treatments mentioned on this site. The common view I gather is keep trying until the right combination of of treatments are working for you. I imagine trigger point injections require a skill gained through practice to give you the best chance of working. I know that my Botox injections can be a little hit and miss. This last round didn't work quite as well although in general helped a lot. Your neck muscles can't tighten up very well to cause the soreness. I would think trigger point injections are similar.The study that I am on will hopefully prove the effectiveness of Botox for migraines so insurance companies will pick it up. I used to take 2 -3 Maxalts per week for migraines that are very expensive. I have only take 1 or 2 in the last 9 months and have stopped taking anti-seizure meds completely. I don't know if that cancels out the cost of Botox but it does help make an argument for coverage.

You'll find that you are not alone with these headaches. Larry is from Australia and might have some insights in the medical system there.

Keep posting and let us know what you find out. It seems like a lot of us on this site have found various degrees of relief but are searching for a cure. Your personal insights will help.

Janet

[FlossKaos]

Hi Janet

Thanks very muchly for reading my story.  I have had a little look round the site, but I had no idea that so many ppl suffered from headaches after the AN.  What gets me is that there isn't a cure-all for this, I realise everyones headaches are different and we all respond to different treament, but that doesn't make it any less frustrating

I had my op end of March 06, and I came home from hospital I was doing really well, except for the balance and dizzyness, but the headaches were manageable with meds and sleep mostly, infact i really thought Id be back at work within 2 months or so.  And then I developed Bells Palsy (facial paralisis) and from then everything went backwards. 

I will talk to the doc about the botox, i reccon he'll think im mad though!!

I will keep posting cause I really feel for everyone who has to put up with this.

Thanks again Janet

Fleur

[Rc Moser]

I have read You can get a rebound headache for you medicine,taking too much medicine or sleeping too long IMO. Also some medicine (mostly all had side effects usually Headache's!). I don't take any pill that the side effects could be worse than the problem I got.  Some of us fight headache's everyday. The problem is when they turn into migraine's and our brain starts shutting down (are these the headache you are referring too?).

IMO it's going to be a tough road finding a pill that stops one pain and doesn't cause another. I would look at the side affects real good, liver, heart, colon, stomach problems are just a few some pills will cause. IMO most Doctor's are pill pusher's and don't believe our problems especially Gp'ers they think it's in our heads and a head doctor cure is a pill. Neither IMO  see the danger that some pills can create which includes death if you happen to be that 1 in 100,000.  .

 I suspect it's some medicine you may have took causing your headaches. I would review my medicine I was taking around the time the problems started and see if any new medicine could be the problem. I also think we have had so much change that it would be hard to pin point anything. Ususally 10 out of the 12  Crainal nerves are affected by AN operations. Only after three years I am maybe 40% back to normal, if I knew what normal was I know none of this is good news or positive feedback, but if we don't investigate what we put in our system nobody else probably will.

[Janet]

RC,

Thanks for the info.

My headaches are really head pain. It is like someone took my occipital nerve and pulled on it like a guitar string. It lasts around 20 minutes and peaks at around 10 minutes. It is like drilling a tooth to the nerve. I wish there was some sort of test that could put a numeric value on the intensity. It would be off the scale. My AN surgery was easy to put it in perspective. Bending over and certain positions can cause it. Other times I haven't a clue what I did to cause it. I only get this pain on one side of my head. I get little versions of this throughout the day. Anti-inflammatories help decrease the severity and frequency, Botox tells my muscles in my neck to ignore the pain. There probably is some sort of rebound process but why only on one side and why would certain positions trigger it? It seems like trigeminal neuralgia but on the occiptal nerve.

I take a lot of anti-inflammatories so I am at risk for rebound headaches or maybe these are rebound? I'd like to stop taking them if it would help. I am hoping that this nerve just ups and dies someday! Who knows, maybe the anti-inflammatories are prolonging the process. My life is up and running and I feel energetic and enthusiastic so I don't know if stopping my medication would be worth it unless it is the problem. Thanks for the info. I'll bring up the subject with my headache neurologist. Thanks.

Can you tell me where you found that 10 out of 12 cranial nerves are affected by AN operations?  This sounds interesting.

Thanks, Janet

[jerseygirl]

Hi,

Things that worked for me: Aspirin for muscle ache (scar and shoulder) and general discomfort and fatigue (small doses, like 1/2 of a regular strength), sleeping no more that 7.5 hours at a time (otherwise I would be waking up with a headache), sleeping on more than one pillow (so that the head is at 45 degree angle to the bed), avoiding sleeping on the operated side (prevented a lot of headaches), accupuncture (both as immediate relief and a preventive measure), shiatsu massage of my neck (softens the scar and breaks up the spasms, although have to do it when it does NOT hurt) and ,believe it or not, exercise. In the short term, exercise increased my headaches, but overall, decreased them in severity and frequency.  Another tip: my headaches were accompanied by nausea and vomiting, so I had to take Indocin suppositories because I could not hold anything down. Hope any of it helps.

  Eve

[Rc Moser]

I don't know how to paste a site without it opening up. Done alot of google searchs on headaches and cranial nerves of the brain. Let everthing else you read it may or may not pretain to you.  I can find the article on rebound headaches, maybe some one else can post. Somebody posted this site which IMO is very helpful on understanding AN's and the different approaches used. Hopefully you headache pain will start to deminish, mine was really intense the first year and have graudual become less intense with few MIgraine's.

I think I found the infor on rebound headachces at familydoctor.org. the other site is the http://www.theblackriver.net/wobbler/wobblercognitive.html.  Hey I done it on that one.
A real good site that someone posted hear is the Hesinki report  http://ethesis.helsinki.fi/julkasut//laa/kliin/vk/levo/vestibul.pdf    This one wouldn't paste

IMO all of us have different side effects, but it don't hurt IMO to learn all you can about this procedure and the medicines we take to control the after effects.  This may or may not pretain to you, but will give you some answers or clues hopefully.  Sorry you have to suffer through the headaches. I for one know first hand how crippling they can be. You can also do a search on Hemicrania Continua after Acoustic Neuroma removal. I can't find my site on the 12 crainal nerves, but if you do a search you will come up with alot of hits. Enough to give you a headache 

Added

I found the edcational site on crainal nerves and the Auditory and Vestibular system. http://thalamus.wustl.edu/course/   You can click on Brainstem Nuclei of crainal nerves.

[Battyp]

I did botox injections for migraine prior to finding the AN.  It helped immensely.  My shoulder and neck muscles were screwed up from a car accident..the stress would go right there and wham me with a migraine.  After the injections I was able to get down to needing one zomig a month  until I got hit by the AN monster.  Of course I thought I had migraines again as my head hurt so bad but after starting steriods I realized it was a different type of head pain.  I'm back to a naggy headache that starts on the back side of my head and goes up to my eye socket. Hate em!  Fiorcet helps and doesn't aggravate my facial numbness.  Zomig made my face hurt worse for some reason. 
I'm thinking we all need to do Captn' Debs headache jumbie dance...anyone got any feathers?   

[Captain Deb]

Fleur,
I've suffered from chronic post-op headaches for almost 4 years, and as they have gotten a bit better in the past year, they still have a great impact on my quality of life.  Right now I'm seeing a headache neurologist at a headache clinic. He's put me on 2700 mgs of Neurontin and I give myself shots of 2g Imitrex for the really bad ones.  Mine started at 2 months post-op as well and start in the back of my head and "crawl" up along my mis-fossa scar and lodge behind my eye. Often I am severy nauseous.  I had moderate migraines pre-op--so mild a few Advil and a short nap would knock them out. The theory is that the surgical insult kicked them into overdrive. The new doc is treating me for "cluster headaches with migranous components."  Clusters are nasty things indeed. Check out http://clusterheadaches.com for more info on these.

Also, if you go to the Welcome Message Area and read the Helpful hints thread, you'll find instructions on putting a signature in your posts, which will give us a fram of reference on you when you post--it's the stuff in the small type at the bottom of each of our posts.

Capt Deb