Occipital Neuralgia Relief

I have severe constant (chronic) bilateral Occipital Neuralgia. I have been receiving Nerve Blocks for 20+ years. I was unable to work anymore
I was approved for long term disability after 22 years with my BCBS company I worked for & then approved right away for Social Security Disability. Note, I could barely walk any more. My whole existence was reduced to no life. Before that I was told I had migraines but tried everything & migraine pills every day with pain getting worse over years. Who knew that what I thought was my worse at level 10 would get worse & worse over years. How in the world do you describe pain level when it is worse then the last time which you thought was level 10. Them finally tons Pain Treatment Center Dr. Two Nerve blocks over 10 years was still not helping. Until 1 Pain Dr said I'm sending you to who trained me. Then I was getting 4-6 in back of head. Top of my head got worse even with back of head better but still pain with some relief for a few months. Then this Dr contacted other Drs in USA. She started giving me 6-8 on scalp where I would point to areas which were the most excruciating. Finally I got some relief but still excruciating. I had RFA done on all levels of my neck/cervical spine. It was worse for months then wow, better. However, I can't afford to do that all the time. So I have been continuing nerve blocks on back & top of head for over 10 yrs now. However, the last 3x the new Chief/head of Pain Treatment Center started prescribing me the steroid Medrol Dose Pack. What a huge huge difference in relief & the relief lasts much longer like 6 months. I have to explain though that I still have pain on top & back of head. The difference is in the severity/level of pain. I explain the difference as being where my head feels like I have been beaten with a baseball bat, or something heavy multiple times and left to die, where I can't function, think or do anything because I feel I'm going to die from this trauma to my head with absolutely NO QUALITY OF LIFE LEFT compared to being able to I can actually walk with my dog, do some chores and talk to a friend because the pain has decreased enough where I don't constantly feel like dying because of excruciating pain. I still have pain though. I also have other pain conditions. I have tried & been on tons of different meds. I'm still on Morphine ER, Tramadol in AM only, Flexeril at bedtime or if needed during daytime, Diclofenac ER, Propranolol, Escitalopram, Enbrel Auto Injector, Levothyroxine and a few others.

@barbiejohanna
What a life you have gone through and just not enough answers. Sending prayers for you and your system to give the right person the knowledge to be able to help you. Hoping you have a blessed day today 🙏

@randallshields56 Thank you. I have the best Chief MD at Pain Treatment Center of UofR Medicine, which is part of Strong Memorial Hospital. He, Dr
Carinci, my PCP, Dr. Newman and my Rheumatologist Dr are the best and they listen & continuously work with me on my medical battles of pain. (Note: I'm 57 years old now.)

@barbiejohanna
I will be 70 this year and through many head injuries and migraines at early youth, multiple vehicle injuries and falls resulting in head injuries along with others, this last one 2 plus years ago, tumor in the brain one step down from glioblastoma i know the struggles, meds to many or not enough. My tumor was cancerous and through it all still kicking. Had some really good doctors, some not. But those that listen are keepers. Thank you for your post 📫 🙏 sending good vibes and blessings for better years ahead 🙏

@soledad02 I know you posted this two years ago, but I'm really curious about the injection you received. Have the headaches ever returned, and did you ever find out what was injected? I've struggled with ice-pick headaches for years.

@barbiejohanna wow! You have been courageous in your battle with ON!

I have it also. Sometimes I tell people that even my hair hurts. I have to laugh sometimes.

Over the last 2 months I’ve fallen backwards twice, and hit my right cheek. My jaw joint is messed up. I’m getting shots of lidocaine across the back of my head, behind my ear, and scalp.

I have a movement disorder that makes me a fall risk. If I bend forward, there’s a good chance I will fall back down.

Wishing you all the best.

@SusanEllen66 Were you diagnosed with ON? If yes, then have your hair hurt is part of the ON but not every ON sufferer has this type of pain on top. Numbing medicine called Bupivacaine or Marcaine is used in Nerve Blocks including a steroid. However, the numbing med doesn't always numb the area unless the Dr hits exactly on the nerve. If it does I the numbness only lasts for up to 4 hrs maybe. What my Dr has learned is that I feel my head with my fingers pressing down to pinpoint the area that the pain is extremely worse so he can put the needle to that exact spot & inject. He injects a little in every spot until he has no more liquid in the syringe. Do, typically I get 4-6 in back of head & same # of injections on top of my head. Unfortunately this last time I let one of the Fellowship Dr my Dr is training do the injections. I won't do it again. He wasn't paying close enough attention to the areas I pointed to. This is because I believe he was nervous because my Dr was talking to him while he was doing injections.
I just want to let others know with ON like mine, that my head gets even worse the next day for a week or so because the injections cause the nerves to become more inflamed. It takes time for the steroid that is injected to really work. This is another reason why I now take Medrol Dose pack about 4 days after my injections to help calm down the increased inflammation. If anyone else who has ON wants to share their experience with me or ask questions I would like to hear from you.

I also suffer from occipital neuralgia for a number of years. I had a terrible weekend. We had heavy thunderstorms with 3 periods of thunder and lightning. I actually believe this rain storm brought on my latest attack. It started with awful lighting bolt from right above my ear going up and in towards my right eye. Then for hours I would have little sharp stabbing pains until the next lightening attack. Just like the rain I had 3 sessions of these. I have my occipital and trigeminal neuralgia be effected by weather, but nothing like this. My head actually felt like it was bruised and physically I was depleted. I believe my medicine I took did not end it but just kept me comfortable enough that I would keep dozing between lightening bolts.

MY QUESTION IS: HAS ANYONE EVER EXPERIENCED AN EVENT LIKE THIS.

@ckscoville I'm sorry to hear of your ON pain. Yes my pain returned about six months ago but not as intense. We've moved to another state since my first injection. I reached out to a pain management doctor I've seen presiously for another issue. He gave me an injection (not very painful) in the back of my skull in the area of my occipital nerve. It worked right away but returned a week later for a few days, again not as intense. The pain subsided after that episode. Please see a pain management doctor as they deal with this type of disorder. It's so worth it to me and if needed will continue with these injections to get relief. The pain can be so unbareable.