Methadone and Nerve blocks (and neural-feedback)

[GeorgiaMei]

I saw a headache specialist yesterday, after suffering with chronic daily headaches w/ frequent migraines that have been going on since my AN removal a little over a year ago.  He suggested that post-brain surgery headaches generally last 3-5 years and that the methadone I take to treat the pain is preventing any non-opiod drugs from working.  I am wondering if anyone else is taking a narcotic to treat severe headache pain and if anyone has heard of opiods increasing pain or preventing other drugs from working?  He was a real jerk and said some awful things.   He was really judgmental that I need pain treatment at all!         
 
Also, I am thinking of trying a nerve block and would really appreciate hearing people's experiences with it.  I am really desperate and can't take much more.  I am also thinking of trying neural feedback.   Any suggestions?
Karen

[cin605]

I haven't heard of that they are trying everything under the sun for mine .Darvecette percocette tramodol naprosyn inderol several beta blockers muscle relaxer ointment heat neck brace exercise no exercise....let me know if you find relief.

[GeorgiaMei]

Hi cin.  I'm sorry to hear you are suffering too.  I hope you find some relief.  Karen

[Captain Deb]

Constant use of opioids will definitely increase your pain level--it happened to me and is called rebound headache or rebound pain.  Until I saw a headache specialist at a headache clinic at 3 years post-op I was taking something, either hydrocodone or tramadol or ibuprophen, nearly every day and was suffering terribly.  I was put on Neurontin and later Topamax and informed about rebound pain and I gradually got better. Do some research on rebound headache.  Also I started getting occipital nerve blocks every 5-6 weeks and that has helped quite a bit.  Depomedrol is what they use with those.  I ended up getting full disability benefits and Medicare for my headaches.

Capt Deb

[cin605]

I have an appointment w/ dartmouth hitchcock medcal center Neaurolgist who spcialises in headachs is this the right headach specialist?
You say nerve blocks every 5-6 weeks what are those?

[Captain Deb]

cin,
 Sounds like you are on the right track with the headache specialist.  Nerve blocks are injections of long-acting steroid called Depomedrol which is injected into the greater and lessor occipital nerves at the base of the skull.  They seem to tame my head pain down by a few notches.  The problem is I can't keep having them forever so now I only get them on special occaisions like before I go on a trip or something.  Last year I got one before I went to the beach and I ended up being able to go body surfing, walk the beach, and be alot more active than I usually am.  Good Luck with your appointment and remember, no one is judging you about using narcotics for when you are in pain.  Having these headaches is life-altering and we do anything for relief.  The narcotics and opioids are just not good long-term therapies for this type of headpain and can do more harm than good. There are other alternatives out there and sometimes it's just trial and error till you find what works.  You may want to order CD transcripts from the Philadelphia ANA symposium's headache workshops to inform yourself a little more.

Hugs,

Capt Deb

[cin605]

Thanks for the great advice.....i am at wits end trying to live the new normal life.
This whole ordeal is like someone just dropped a 200 mile long 200 mile high wall in the path of my life.
I am not enjoying anything becouse when i attempt to my muscles in my neck & head spaz out leaving me w/ a big fat migraine
or pain shooting down from my neck through shoulder blade burning inside.Not to mention the whole walk like a drunk.
Today i went chiropractic.....first time since surgery...praying he would just crack me back & i would walk out of office & feel like going for a walk....he said my whole spine was shifted to the left..all i could think is this is from my body trying to balance its self out.
Any way no luck there..still feel like doo-doo.
i tslked w/ neaurolgist he said the med he had me on was to prevent migraines not help them when they do come .Now he wants me to try Maxalt.I'll give it a whirl.

[JudyT]

Hi cin.........I too suffer from moderate to severe headaches (almost 4years out from CK) almost everyday along with balance issues. This is often dibilitating and depressing. I am a widow, living alone so must rely on outside help for some things....gardener.....no longer can work in my garden that I love, housekeeper, no longer can even change my bed( bending over/lifting....painful dizziness) vacuuming, mopping floors etc. I grocery shop but need help getting it in the house....use electric cart in store.....driving....impossible at times. I love to cook however am very slow and must sit down often. On a good day I cook several dishes, divide and freeze.....and I enjoy it. I am an artist but have vision problems and often can't paint. Playing my piano is difficult due to vision/pain issues, reading the music is difficult. Doing laundry....bending over causes dizziness....on occasion have gone headlong into front loading machines.....causes me to laugh at myself. I could go on and on but no need. I feel very blessed to have my family....especially my grandchildren My grandaughter (17) is wonderful.....drives me....assists me....encourages me and is VERY protective of me. I have been her "Nanny" since she was 2 weeks old. With all that is haywire, life is still worth the living....we must keep seeking resolve, make changes, accept our plight and count the blessings each day.....I am my own strong advocate and question doctors when needed.....this is a must. I find massage, yoga, meditation very helpful.....not always successful....but useful. A deep faith that I will find my way and you will too. We are all unique and I believe there is a lesson in all of this mess.......just need to find it. I have been an "A" type personality my entire life....now I must let some stuff go...not easy. Keep trying....allow yourself time to adjust to issues that are defeating at times but nonetheless important to you. What works for others may not work for you....but try. There is a wealth of information here and people willing to share,support your efforts and understand.....keep coming here....it's a good thing for you and all of us. Take good care of yourself................Judy

[cin605]

Thank you Judy for words of wisdom.

[Melissa778]

I have nerve blocks done about every 3 months.  They seem to help me.  And they really aren't painful...slightly uncomfortablefor the first 24 hours maybe, but other than that a breeze....I still at times have to reach for other meds to help a headache, but not as often with the nerve blocks.  And sometimes just advial or tylenol will do the trick.....which NEVER happened before the nerve blocks.

Best of luck to you!

Melissa

[Joe Meehan]

I am not enjoying anything becouse when i attempt to my muscles in my neck & head spaz out leaving me w/ a big fat migraine
or pain shooting down from my neck through shoulder blade burning inside.Not to mention the whole walk like a drunk.
Today i went chiropractic.....first time since surgery...praying he would just crack me back & i would walk out of office & feel like going for a walk....he said my whole spine was shifted to the left..all i could think is this is from my body trying to balance its self out.

Wow your story sounds exactly like mine. I've got muscle tension headaches triggered in large part to muscle spasms in my neck from nerve inflammation. I've pretty much narrowed it down to inflamed irritated or mis-firing occipital nerves.

When they cut into your scalp all those pain nerves are kind of tucked away. It's kind of like a downed power line if I got it right. There is a lot that can go wrong in the healing process.

You can read the thread on Dr Acquadro from Boston. He has me on Lyrica, Botox for my neck and Lidoderm patches. I've been on antispasmodics and OTC pain relievers 9 months, enough is enough. I get some hangovers from them (rebound headaches) so I want off asap. I feel the Botox really helped my neck spasms (Harvard Pilgrim did cover it). They didn't help so much with the headaches I'm hoping the Lyrica does. It is for inflamed nerves. Dr Feel Good has had great success with it. If it doesn't work I'm going to explore the surgical route that Janet prescribed. She found a surgeon that found a nerve stuck under her titanium plate, some scar neuroma and another problem on the other side of her head w/an artery that pierced one of her occipital nerves (I believe this was present before the surgery). She had her second surgery yesterday to repair a problem further down the nerve that they didn't discover the first time. I'm anxious to hear how she did. I'll keep you posted on my progress. I hope you find relief. Arm youself w/knowledge and you'll get to the bottom of it. Don't rely on Doctors!! Everything is so specialized now and fragmented. You have to take charge. Joe