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Occipital Neuralgia Support Group
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C2 neuralgia ForumsGeneral & SupportWhat pain meds work for you ?
02/13/2011 08:56 PM
Julesabby
Posts: 127
Member

Can anybody tell me what pain meds work for them for ON. The only one I was ever on was Darvacet which did not really give me any relief and they have taken off the market. My primary doc put me on tramadol and it does not seem to last very long to give me any relief. I have went to some doctors who have told me that most pain meds do not work for people who have ON ?? I want to ask my doc to give me something else to try and wanted to see what else there is out there that can maybe help.

Thanks,

Jules

Reply

02/14/2011 06:38 AM  Top
bmac
Posts: 305
Member
I'm an Advocate

Hi - Unfortunately none of the pain meds prescribed worked for me. I control my pain by seing a Neuromuscular Therapist every 3 weeks (originally i saw him twice a week for 4 months) He taught me how to treat my neck and head twice weekly. I also use of a pressure pump 2 times a week and lots of prayer.

BMac


02/14/2011 07:29 AM  Top
brugette
brugette
 
Posts: 941
Senior Member

Jules, I'm in the same boat. Darvocet was one of the few pain meds I wasn't allergic to. I talked to my doctor yesterday, yes on a Sunday he gave me his cell, and he's going to try to figure out something else for me to take.

Good luck in your hunt. I let you know if I find anything but we all know nerve pain is hard to control.

Hugs,

Patty

As the group leader I am happy to give you my opinion on issues, but please remember I not a medical profession, just another suferer of ON.

Some days it's not even worth chewing through the restrains.

Same Nightmare, Different Day

02/14/2011 08:48 AM  Top
annieohio
annieohioPosts: 131
Member

I take fioricet as needed for pain, and endocine(endomethacin) and elavil(amitryptilin) as maintenance.

The elavil does help me sleep thru pain, but not always. The endocine is really hard on the gut. I take 2 fioricets as soon as I recognize pain, usually helps, usually. I had tried percocet and it did nothing.

Annie


02/14/2011 09:25 AM  Top
Arlet
ArletPosts: 164
Member

Bmac,

I've never heard of a pressure pump for headaches. Can you give us more information on it, please?


02/14/2011 10:21 AM  Top
cmiller
cmiller
 
Posts: 863
Member
I'm an Advocate

A pain management doc Rx'd me a pump called PRONEX it is a pneumatic cervical traction pump that you place around the neck and pump up until you feel relief. It was quite expensive but the doc assured me it would relieve some pain by opening up all the compressed areas around my neck.

So it came and OMG it was the most painful thing for occiptial neuralgia because it pumped up pushing near the mastoid bone. I went back really angry and she said "oh it can't hurt that much its soft rubber". That told me she had no clue about occipital neuralgia. Something else I had forgotten I had tried for this pain early on when I didn't understand it along with chiro, physio including trigger point therapy from a "guru" in the field who swore he could fix any nerve inpingement lol and deep tissue massage. Nothing actually relived the nerve pain but some did help the muscles. I also had an anterial discectomy (fusion with a plate) at C3-C4 to make sure it wasn't the ruptured disc that was causing my pain. I had 6 of my back teeth removed because I had read that old amalgum fillings could cause pain. Afterwards I spent 8 months in agony with the jaw bones slowly dying and splintering away. I would have to break away small pieces that peeled out and if I couldn't break them out they would get infected and ulcerate. I had to break out about 12 pieces and 4 times I had to go back to the dentist for him to remove them surgically. Eventually it was fixed by using Biotene for dry mouth wash, toothpaste and gel. The dentist said that because I was laying in bed with my occipital neuralgia not talking or doing much to help the saliva in my mouth regenerate the jaw bone did not heal. What a lot of agony for such a simple solution.

I have been on my cocktail of neurontin, norco and zanaflex for two years to slow the electric shock type spasms. None of the meds worked alone, but together they seemed to help a little. GRRRRRRRRRR

C

Post edited by: cmiller, at: 02/14/2011 10:28 AM

I am not a medical professional. I sufferered Occipital Neuralgia and had right and left occipital nerve release surgery in 2010.
Before surgery I would throw up almost daily from the severe dizziness and had severe light and sound sensitivity. I stayed in bed, curled up in the fetal position wishing I had the courage to kill myself. If I didn't take a cocktail of antiseizure, opiates and muscle relaxers I suffered hundreds of electric shock type pains per day in my head and had a constant migraine type pain 24/7 from july 2008. I lay grieving for my life that once was the friends who once were and the void in my future.
Right surgery 100% relief; left surgery, scarring grabbed a crown nerve and I had surgery again to relieve that june 2011. Surgery really helped but was left with daily migraines triggered by certain sound pitches making living in this noisy world very difficult

02/14/2011 01:18 PM  Top
mamalu
mamalu
 
Posts: 302
Group Leader

wow, you have really gone through alot. I am sorry. It saddens me so much to know that drs. have no clue and act like this doesn't exist. I had a neurosurgeon, look at me and said when she gets a headache she takes 1 tylenol or advil and thats that!!!! I cried all the way home. 1 neurosurgeon said to me occipital nerves oh yeah they are way up there!!! Pointing up my head. Wow I have really had an eye opening last 3 years with the run around. I am so thankful this is here. You all know and experience the same lack of understanding from others.. I on this valentines day am so thankful for all of you!!!!
mamalu :))))I do care about you so,,, I am not a Doctor any information I give is purely from my experience or that someone else has given me. Please seek professional help if you are having an emergency. Take care of you. You are special!

02/14/2011 02:23 PM  Top
cmiller
cmiller
 
Posts: 863
Member
I'm an Advocate

I am so sorry you found the docs we all hate seeing. I always think of the joke that asks "what do you call a doctor who graduates at the bottom of his class"? "Still a doctor" Don't get discouraged because there are good doctors out there they just have no clue when it comes to occipital neuralgia. I have learned to throw out the doctors who have God complexes and look for those who will take the time to listen and know you are indeed suffering. The "runaround" unfortunately seems a part of this beast of a syndrome. I have to believe that eventually doctors will learn about how devastating this condition is and how there is not one set of symptoms. We sure have learned that here; some have the sensitivities of light and sound etc some do not; some have lots of spasms some do not; some have it without relief and some have it intermittently. One thing we all have in common is that our lives are changed and we struggle with things that we used to take for granted.

I am so thankful to each person on here who takes the time to share the experiences good and bad so that we may all work towards a pain free life.

Hugs,

Chloe

I am not a medical professional. I sufferered Occipital Neuralgia and had right and left occipital nerve release surgery in 2010.
Before surgery I would throw up almost daily from the severe dizziness and had severe light and sound sensitivity. I stayed in bed, curled up in the fetal position wishing I had the courage to kill myself. If I didn't take a cocktail of antiseizure, opiates and muscle relaxers I suffered hundreds of electric shock type pains per day in my head and had a constant migraine type pain 24/7 from july 2008. I lay grieving for my life that once was the friends who once were and the void in my future.
Right surgery 100% relief; left surgery, scarring grabbed a crown nerve and I had surgery again to relieve that june 2011. Surgery really helped but was left with daily migraines triggered by certain sound pitches making living in this noisy world very difficult

02/14/2011 03:44 PM  Top
Julesabby
Posts: 127
Member

Thanks everyone for your responses... I am going to have to call my doc soon and see what she can do for me. I had so many bad experiences with neuro docs !! One got annoyed at me when I was trying to answer her about my pain level ? I ended up yelling at her and never went back. Then went to a pain mang doc he did all the nerve blocks etc on me and told me he would not give me any pain meds even though all the other treatments did not work ? What a waste of months of dealing with him... I never asked him for any meds while he was treating me but when he told me he could not do anymore for me I asked about meds. I did tell him look I am not someone looking for pain meds and abuse them ! So now my primary doc is trying to find something to help me since she knows I have done all the treatments.. And my Neurosurgeon wanted to cut the Nerve and I am not doing that for sure... Looks like I may try and go see Dr. Ducic...

Jules


02/14/2011 09:03 PM  Top
cmiller
cmiller
 
Posts: 863
Member
I'm an Advocate

Julesabby,

I am so sorry you have been through the wringer too. It is bad enough dealing with these docs when you are feeling okay let alone with our heads pounding and not our own to think straight. Gees, I think some docs really have compassion fatigue.

I know you are on the east coast so Dr. Ducic seems to be the go to doc.

Good luck,

Chloe

I am not a medical professional. I sufferered Occipital Neuralgia and had right and left occipital nerve release surgery in 2010.
Before surgery I would throw up almost daily from the severe dizziness and had severe light and sound sensitivity. I stayed in bed, curled up in the fetal position wishing I had the courage to kill myself. If I didn't take a cocktail of antiseizure, opiates and muscle relaxers I suffered hundreds of electric shock type pains per day in my head and had a constant migraine type pain 24/7 from july 2008. I lay grieving for my life that once was the friends who once were and the void in my future.
Right surgery 100% relief; left surgery, scarring grabbed a crown nerve and I had surgery again to relieve that june 2011. Surgery really helped but was left with daily migraines triggered by certain sound pitches making living in this noisy world very difficult
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