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MoxieGirl

Greater Occipital Nerve Block - and doctors are morons

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Hi gang,

Just got back from seeing a "headache specialist" at my local neurology department. 

Her thick accent and my bad hearing probably didn't aid the appointment, but she could have really been a better listener. I'm going to rapid fire questions at you and only give you time for a yes or no answer, with no chance to explain, because we are on a tight 10 minute schedule and I don't care that you've had migraines all your life, cluster headaches for 12 years and once had a headache last 7 months - I have other patients to give 10 minutes too, so chop chop!!!

Well, that's how it felt anyway. 

Of course, I've not seen a doctor at THIS hospital before, so was smart enough to bring in all the letters I had from my previous neurologists, 'cause I knew she wouldn't have a clue about my history. 

The main option she gave me was for a Greater Occipital Nerve Block, or Botox. Or, at least I'm pretty sure she was on about Botox, really couldn't understand her thick accent. And, of course, my best friend wasn't there with me to translate because she's dead now. So I was pretty screwed. 

Anyway. Has anyone had one of them there nerve blocks for clusters or migraines? Any thoughts on the procedure?

I'm not keen on turning off nerves. Something tells me they are there for a reason, and I'd really like to solve the problem of migraines instead of just stopping my ability to feel them. 

I hate doctors. Apart from 1 or 2, ok, 3. But all other doctors are morons. I didn't even get a chance to ask the questions I wanted to ask, but I did get a strong vibe that this woman was not going to prescribe me cannabis, even though I know it helps.

Oh, she did give me a single sheet of paper on which she wants me to keep a headache diary on. This is despite the fact that I took in 9 SHEETS of paper that I printed from the headache database I have been meticulously keeping for 9-1/2 years! These were graphs and summaries of every headache, migraine and cluster headache I've had since 2010. I can also print out a list of every triptan, pain killer and preventative I've taken. But, let's just ignore all that and fill in this stupid sheet of paper. Dumb ass. 

*Sigh*

Mox

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Sadly your experience is typical of folks with non fatal, longitudinal poorly understood conditions.  Most office based physicians are unable to deal with problems that do not fit inside a prescribed box.  The best you can hope for is a cooperative physician partner who can support the limited options modern medicine has for dealing with cluster headaches.  This would include prescribing O2, the occasional imitrex/steroids/misc Rx, lab tests for Vit D levels and maybe CRGP inhibitors.  As most of us know there's little to be gained from an ER visit or a doctors visit when it comes to cluster headaches.  Not fair, it sucks and I doubt it will ever improve.  This is why groups like this are important.

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Yeah, but I wasn't even going in for cluster headaches! I have those under control.

It's my migraines (22 a month) and headaches (18 a month) that I need help with. 

Hate doctors.

Mox

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I haven’t read all the posts, I just had a Sec to stop by, but I got occipital blocks and spg blocks done twice a week by a pain doc. He did both sides which seemed odd to me, I went for 8-10weeks. Ended up w a 8K bill and they helped but didn’t stop my CH. I have come to find out by my neuro who had trained the pain doc I saw. So he knew he was doing unnecessary procedures!!!  Then I found out he wasn’t doing the greater occipital blocks properly. There was a study my old doc showed me last appointment that was 3 greater occipital nerve blocks in a 72 hr period w steroids as well as lidocaine did provide significant relief in the study pts. I’ll look for it. I’d try it see if they would do the 3 in 72 hr period. Here in the states insurance companies will only pay for one block every 2 weeks!

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Thanks my friend,

Good info as always.

That's part of my concern. How long will the nerve block last for me, and how often will I have to go back in for top up shots? It won't cost me anything, other than parking at the hospital. From what I've read, the drugs in the cocktail are pretty tame, but still, I'm quite sensitive to a lot of things. It doesn't give me any warm and fuzzies. 

I had some Lucy last week, and got a full week + a few days migraine free! Going to take some more soon. Hoping a few doses will knock them down. Also, may have good news about my lasted gardening attempt next week. Will keep you posted. :)

xx Mox

 

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So I just got home. Drove dad across NJ all day, threw my M tank in the car and as it happens I was lucky enough to get a migraine last night that’s being a persistent bugger. And the Ch doesn’t scare it away any more they both occur simultaneously. So I haven’t looked up the study yet to give you numbers on avg pain free or reduction of severity time. All I know is if they will do it 3 consecutive days (fairly positive that’s what the study did but I’ll dig it up) you get the best results. The only real side. Effects besides the standard ones for steroids which can rarely include a vascular necrosis of the hip the main risk is balding at the injection site with frequent blocks. The steroid risk is minimized greatly compared to oral or IV doses. I would try it for sure. Everyone responds differently as usual... they did help me though. The first time I went to him to beg for some kind of help, he did the occipital and SPG blocks and it did stop the CH I was having dead in its tracks. Even if they won’t do the consecutive blocks it’s worth a try if it costs you nothing but travel and stuff. 

 

I will I’ll do my best to find the study so you’re armed with the info. When is this supposed to happen?

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So I just got home. Drove dad across NJ all day, threw my M tank in the car and as it happens I was lucky enough to get a migraine last night that’s being a persistent bugger. And the Ch doesn’t scare it away any more they both occur simultaneously. So I haven’t looked up the study yet to give you numbers on avg pain free or reduction of severity time. All I know is if they will do it 3 consecutive days (fairly positive that’s what the study did but I’ll dig it up) you get the best results. The only real side. Effects besides the standard ones for steroids which can rarely include a vascular necrosis of the hip the main risk is balding at the injection site with frequent blocks. The steroid risk is minimized greatly compared to oral or IV doses. I would try it for sure. Everyone responds differently as usual... they did help me though. The first time I went to him to beg for some kind of help, he did the occipital and SPG blocks and it did stop the CH I was having dead in its tracks. Even if they won’t do the consecutive blocks it’s worth a try if it costs you nothing but travel and stuff. 

 

I will I’ll do my best to find the study so you’re armed with the info. When is this supposed to happen?

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Found this document that reviews a lot of GONB greater occipital nerve block...  mainly in migraine but I’m still scanning it to find the CH study. https://www.uhcprovider.com/content/dam/provider/docs/public/policies/comm-medical-drug/occipital-neuralgia-headache-treatment.pdf#page3

Not what I was looking for but may answer your questions if they just do one: https://www.mdedge.com/clinicalneurologynews/article/56433/pain/occipital-nerve-block-cluster-headache-two-thumbs

still not what I’m looking for but a good resource  scroll down to the chart and you can click the numbers to see the study... https://headachejournal.onlinelibrary.wiley.com/doi/full/10.1111/head.12053

BBL when I find the CH one. 

Edited by Freud

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Oh shit, I was wrong one patient in this last study got AVNOTH. A vascular necrosis of the hip... but these are “high volume”. It’s rare but happens... not something I’d do serially all the time w steroids but a few to squash the beast then the rest of the maintenance doses just numbing agent.... 

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Thank you for the extensive background information. I think I'm going to press on with Lucy and her friend Magic Mike for awhile and see if I can stop them that way. At least then I have control over things and not dependent upon getting an appointment at some random time. But, it's good to know it's an option, and if my solutions don't soon make a clear improvement, then I will give it a try. 

I like your comment about having a cluster 'scare away' your migraine. I've had this happen a few times, and it is EXACTLY what it feels like. I remember I was once in the middle of a 3 day migraine when I got slammed with a massive cluster. After the cluster, I was utterly pain free for about 2 hours, but could sense the migraine peaking its nose around the corner, checking to see if the cluster had left yet. 

xx Mox

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No experience with botox save for 3/5 people saying I should try it because x friend with migraines had good results. I do not experience migraines, so that may speak to you Mox who does, might be worth checking. As for occipital nerve blocks, had...4? First three did next to nothing, 4th was done by someone far more knowledgeable of them and involved, about 5 needle moves all around the occipital bone at the back of my head, while it did not stop or even arrest them, I am positive they were in the right spot, since it triggered one on the fourth needle insertion and injection. I had less severe ones that week (Chronic with 4-6 a day) though that does not in itself mean it was the block, as levels can go all over the map whenever they want.

 

Bottom line, keep hearing a lot of positives from the botox for migraine. As well as average results for clusters from blocks. 

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Thanks devonrex, that's very helpful. Love first hand reports.

Everything I've read about Botox says they only work for people who have migraines with auras, and I don't have auras with my migraines. And I tried to explain this to the doctor, plus, have you seen people who have had a lot of botox? They look like aliens. LOL 

I'm going to have some Lucy this week, and I think I have enough for one more dose after that. Then, fingers crossed, should have some shrooms in the ground and will be working through those for a few months. I bet I'll get better results without some doctor putting drugs in my veins and turning off nerves. If my remedies don't work, then I'll talk to the docs again.

x Mox

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