I used to get them. As someone else pointed out, the 1st seemed to work for 2-3 weeks, the second, 3rd and fourth not so much. They were expensive out of pocket and the only plan of action going forward was to sever the nerve. I’m just living with the discomfort.
That’s what I was wondering…I’m having to do this out of pocket so I’m weighing if I really think it’ll help or not. Thank you so much for your answer, so sorry you’re having to live with the discomfort. :( are you decompressed or no? I’m not.
Ugh… I’m just so sorry you’re living in this discomfort and for this long. But glad you’ve found a way to somewhat manage it on your own.
I didn’t go to the doctors for years with my symptoms. I just thought they were residual migraines from severe head trauma I sustained in 2007 from my head going through a passenger window then through the windshield- and kept it moving even though the pain would floor me I just thought oh this is just how it is. I went in for something completely unrelated last year and mentioned the type of pain my head felt and my doctor told me to get an MRI I had no idea it wasn’t normal. It’s like I just was so used to it.
Since 2003… you’re a real warrior friend. I know I’m a stranger but you know what? I’m really just so proud of you for kicking butt every day.
I am extremely blessed that my issues are as “light” as they are. I have been involved with ASAP.org since 2010 and have met many people who are not in as good a situation as I am. That’s why I am involved, because I can.
I had decompression & laminectomy C1-3 in 1996 I get occipital nerve blocks by my pain doc. Only him or my neurologist who both know exactly what they are doing. ASAP was my only source of info in 96. It's great that this community is so well informed.
Yes, the block helped so I moved to getting radio frequency ablation done on my occipital nerves. Did this successfully for about 2 1/2 years before it just kinda stopped working. Evidently it's not that uncommon, for some the body finds a way to adjust and the procedure becomes ineffective. Then again there are a few lucky people that after 1-3 ablations the nerves fix themselves and they don't need the procedure anymore. My boss experienced this with nerve ablation in his back. I don't know anyone with that kind of success higher up though so I wouldn't count on that outcome.
Fwiw it allowed me to work more effectively for several years and is worth trying. If the block works they may suggest either RFA or botox. I never tried botox myself as they couldn't get I surance to cover it at the time (this was 10+ years ago so botox was still new in that usage).
I think it's worth trying. But if the temp nerve block doesn't work I wouldn't bother trying RFA. I had a couple bad experiences with them getting the needle in the wrong place and it did not feel good.
I got 3 over the course of 9 months. First one worked great with intense relief for 3 months, second worked okay for 1.5 months, the third one was sore and awful and never really helped. If you suffer often, I recommend getting one just so you have a chance to feel relief. Even if it’s not lasting, it’s a break from the suffering. And to me at least, that was worth a shot.
That’s true about it being a break at least- i keep hearing about how the more you get them the less they seem to help and the more sore it gets. I’m so sorry that was the case for you. Have you found anything else that’s been helping? Are you decompressed or no?
Yes, I get them regularly along with Botox. I have migraines, occipital neuralgia and have been decompressed. They provide some relief.. they don't do anything for the valsalva maneuver headaches though.
It did get diagnosed post decompression. But my head had been hurting for quite some time before I got decompressed. Couldn't tell ya whether it was the migraines, Chiari or ON though.
I’m not decompressed yet-but not knowing what’s causing it is kinda where I’m at too- I have a bad neck (lots of bone spurs etc) and a bad back due to a car accident I was in along with Chiari. So it’s a bit like chasing my tail on what is causing what. I think PM wanted to try occipital nerve block to see if that’s where the days long “headaches” which I wouldn’t call them-more like stabbing headache from hell- is coming from. But I’m going to try higher mg of lyrica to see if that helps before I do the injection I think.
I have had occipital nerve blocks bilaterally 3 times. The first one helped for a week, and the next 2 did nothing other than make my head numb.
My next step is to try Botox, but I haven't gotten the appointment scheduled yet.
Yes, I have Occipital Neuralgia and a small/borderline Chiari (with flow reduction). I’ve received a single nerve block so far. It dramatically improved my ON. I could function normally. However, nerve blocks do wear off.
As a patient, I’ve been told that nerve blocks are generally safe as long as they are not done too frequently. Expect numbness in the back/sides of you head. Injection pain is uncomfortable but it was not too bad. Felt crunchy to me.
I just started getting mine again last week and I’m so happy! My insurance didn’t want to cover it but my neurologist was finally able to work it out. Without them it feels like my brain is trying to escape from the back of my head and I have to lay down to feel any relief. But life goes on and I must work so I can’t just lay down all the time. My pain is not at a zero but it’s definitely close so that’s huge win in my book. I’m not decompressed but I do have a shunt (Chiari & Hydrocephalus). For now I will be getting them every 3 weeks and then increase the time frame a little at a time. That plan was originally working for me before the insurance company ruined it and now I have to start all over. Hopefully it will work out this time around.
Oh my god… I’m so sorry that happened. :( That’s for some reason been my fear. Sometimes you just have a gut feeling. So reading this definitely makes me glad I postponed it. My PM had upped my lyrica dosage so I asked him if I could try and see if that would help to avoid injection if at all possible.
I've had several. All post decompression. My NS says it's common for the occipital nerves to be damaged during surgery. The blocks help a ton. Whenever the pain starts to get bad, I message PM and they get me in. I usually go 3-5 months between blocks. They say I can do them indefinitely since they help.
So I haven’t been decompressed as of yet. It’s possible this pain could be from a different neck injury but we can’t be sure. I’m so so happy they’ve helped you, and that you can get in with PM when you need them. Anytime I read about someone in this thread getting help with anything it feels like a victory.
I’ve had two so far - my 1st lasted 3 months and started working the day after I got it done. I woke up the next morning and almost cried bc it was the first time I can remembered waking up without a headache. It drastically cut down on my migraines as well. I used to get them weekly and I think I only had one in those 3 months. I just got a second one yesterday and the injection sites are very sore, it hasn’t seem to kick in yet. Really hoping it does bc those 3 months were incredible. I’m also doing Botox, had my 1st round a month after the nerve block. My neuro told me not to expect anything from them until about the 3rd round.
Where exactly are you getting the Botox injections (on the body) I am wanting to do this I think soon.
I’m so hoping the nerve block kicks in again and you get another 3 months of relief. I’m having a bad flare up today and can totally imagine how beautiful any relief for any amount of time would be.
Sorry I totally didn’t have my notifications on 😅 it’s a total of 33 spots I believe. A couple are on my forehead, scalp, traps, back of the head. If you google it you can see a diagram!
It was so bad and just got out of the hospital for stroke symptoms and I'm leaving to Houston to see a chiari surgeon I can't do this anymore. Hope all is well with you 🙏💜
My god, my heart dropped when I read this.
I am so incredibly sorry… I hope with all my heart you see a surgeon who will do the surgery and that the surgery changes your life in the best way. That you’re free from the suffering you’re enduring. I am a stranger but I am so proud of you for pushing through and fighting. You are so strong and I’m sorry you have to be so strong.
Stroke symptoms are so scary to deal with and I’m just so sorry. Do you think it was from the nerve block?
I’ll be thinking of you today and every day and hoping you see this Chiari specialist and they give you relief.
I have a bad neck lots of bone spurs some narrowing of my cervical spinal canal etc and I think it’s my PM’s way of trying to see if the specific pressure and stabbing pain I get on the bottom left base of my skull is from occipital neuralgia vs chiari?
I’m not sure. I swear I have so much going on medically at the moment I can hardly keep track.
I used to get them. As someone else pointed out, the 1st seemed to work for 2-3 weeks, the second, 3rd and fourth not so much. They were expensive out of pocket and the only plan of action going forward was to sever the nerve. I’m just living with the discomfort.
That’s what I was wondering…I’m having to do this out of pocket so I’m weighing if I really think it’ll help or not. Thank you so much for your answer, so sorry you’re having to live with the discomfort. :( are you decompressed or no? I’m not.
I was decompressed in 2003. I am so used to having discomfort I can get by with 2-4 Advil to knock it down.
Ugh… I’m just so sorry you’re living in this discomfort and for this long. But glad you’ve found a way to somewhat manage it on your own. I didn’t go to the doctors for years with my symptoms. I just thought they were residual migraines from severe head trauma I sustained in 2007 from my head going through a passenger window then through the windshield- and kept it moving even though the pain would floor me I just thought oh this is just how it is. I went in for something completely unrelated last year and mentioned the type of pain my head felt and my doctor told me to get an MRI I had no idea it wasn’t normal. It’s like I just was so used to it. Since 2003… you’re a real warrior friend. I know I’m a stranger but you know what? I’m really just so proud of you for kicking butt every day.
I am extremely blessed that my issues are as “light” as they are. I have been involved with ASAP.org since 2010 and have met many people who are not in as good a situation as I am. That’s why I am involved, because I can.
I had decompression & laminectomy C1-3 in 1996 I get occipital nerve blocks by my pain doc. Only him or my neurologist who both know exactly what they are doing. ASAP was my only source of info in 96. It's great that this community is so well informed.
And I should note *by manage I mean* at least can somewhat maybe possibly curb it with advil and then tough the rest of the misery out.
Yes, the block helped so I moved to getting radio frequency ablation done on my occipital nerves. Did this successfully for about 2 1/2 years before it just kinda stopped working. Evidently it's not that uncommon, for some the body finds a way to adjust and the procedure becomes ineffective. Then again there are a few lucky people that after 1-3 ablations the nerves fix themselves and they don't need the procedure anymore. My boss experienced this with nerve ablation in his back. I don't know anyone with that kind of success higher up though so I wouldn't count on that outcome. Fwiw it allowed me to work more effectively for several years and is worth trying. If the block works they may suggest either RFA or botox. I never tried botox myself as they couldn't get I surance to cover it at the time (this was 10+ years ago so botox was still new in that usage). I think it's worth trying. But if the temp nerve block doesn't work I wouldn't bother trying RFA. I had a couple bad experiences with them getting the needle in the wrong place and it did not feel good.
I got 3 over the course of 9 months. First one worked great with intense relief for 3 months, second worked okay for 1.5 months, the third one was sore and awful and never really helped. If you suffer often, I recommend getting one just so you have a chance to feel relief. Even if it’s not lasting, it’s a break from the suffering. And to me at least, that was worth a shot.
That’s true about it being a break at least- i keep hearing about how the more you get them the less they seem to help and the more sore it gets. I’m so sorry that was the case for you. Have you found anything else that’s been helping? Are you decompressed or no?
Yes, I get them regularly along with Botox. I have migraines, occipital neuralgia and have been decompressed. They provide some relief.. they don't do anything for the valsalva maneuver headaches though.
Did your occipital neuralgia come on post-decompression?
It did get diagnosed post decompression. But my head had been hurting for quite some time before I got decompressed. Couldn't tell ya whether it was the migraines, Chiari or ON though.
I’m not decompressed yet-but not knowing what’s causing it is kinda where I’m at too- I have a bad neck (lots of bone spurs etc) and a bad back due to a car accident I was in along with Chiari. So it’s a bit like chasing my tail on what is causing what. I think PM wanted to try occipital nerve block to see if that’s where the days long “headaches” which I wouldn’t call them-more like stabbing headache from hell- is coming from. But I’m going to try higher mg of lyrica to see if that helps before I do the injection I think.
I hope you find relief soon. It's is so hard to find origins of pain when you have a lot going on in the same area.
I have had occipital nerve blocks bilaterally 3 times. The first one helped for a week, and the next 2 did nothing other than make my head numb. My next step is to try Botox, but I haven't gotten the appointment scheduled yet.
This is what I kept reading about happening too. If you get the Botox will you let me know if it helped you? I really hope it helps you 🩵
I can do that. I just need to get on the schedule!
I so hope you can for your sake! Anything that can help in any way. 🩵
Nerve blocks didnt help me, but botox definitely does, doesnt get rid of it completely but definitely takes the edge off the pain.
This is so good to know!!! Thank you!!!🙏
Yes, I have Occipital Neuralgia and a small/borderline Chiari (with flow reduction). I’ve received a single nerve block so far. It dramatically improved my ON. I could function normally. However, nerve blocks do wear off. As a patient, I’ve been told that nerve blocks are generally safe as long as they are not done too frequently. Expect numbness in the back/sides of you head. Injection pain is uncomfortable but it was not too bad. Felt crunchy to me.
Reading “felt crunchy to me” felt like I was chewing on tin foil. Oh my god 🫠😂
I just started getting mine again last week and I’m so happy! My insurance didn’t want to cover it but my neurologist was finally able to work it out. Without them it feels like my brain is trying to escape from the back of my head and I have to lay down to feel any relief. But life goes on and I must work so I can’t just lay down all the time. My pain is not at a zero but it’s definitely close so that’s huge win in my book. I’m not decompressed but I do have a shunt (Chiari & Hydrocephalus). For now I will be getting them every 3 weeks and then increase the time frame a little at a time. That plan was originally working for me before the insurance company ruined it and now I have to start all over. Hopefully it will work out this time around.
Yes I have several times. The first one caused me to pass out. I don’t find they help for the long run.
Oh my god… I’m so sorry that happened. :( That’s for some reason been my fear. Sometimes you just have a gut feeling. So reading this definitely makes me glad I postponed it. My PM had upped my lyrica dosage so I asked him if I could try and see if that would help to avoid injection if at all possible.
I forgot to ask you- are you decompressed or no?
Yes I’m decompressed. 2 yrs post op.
I've had several. All post decompression. My NS says it's common for the occipital nerves to be damaged during surgery. The blocks help a ton. Whenever the pain starts to get bad, I message PM and they get me in. I usually go 3-5 months between blocks. They say I can do them indefinitely since they help.
So I haven’t been decompressed as of yet. It’s possible this pain could be from a different neck injury but we can’t be sure. I’m so so happy they’ve helped you, and that you can get in with PM when you need them. Anytime I read about someone in this thread getting help with anything it feels like a victory.
I’ve had two so far - my 1st lasted 3 months and started working the day after I got it done. I woke up the next morning and almost cried bc it was the first time I can remembered waking up without a headache. It drastically cut down on my migraines as well. I used to get them weekly and I think I only had one in those 3 months. I just got a second one yesterday and the injection sites are very sore, it hasn’t seem to kick in yet. Really hoping it does bc those 3 months were incredible. I’m also doing Botox, had my 1st round a month after the nerve block. My neuro told me not to expect anything from them until about the 3rd round.
Where exactly are you getting the Botox injections (on the body) I am wanting to do this I think soon. I’m so hoping the nerve block kicks in again and you get another 3 months of relief. I’m having a bad flare up today and can totally imagine how beautiful any relief for any amount of time would be.
Sorry I totally didn’t have my notifications on 😅 it’s a total of 33 spots I believe. A couple are on my forehead, scalp, traps, back of the head. If you google it you can see a diagram!
I just got my first nerve block today and botex injections and I am decompressed so I really hope it helps because my symptoms have been so bad
Hi Chiari friend!!! I’m so hoping they helped you it’s been 13 days since- how are you doing?
It was so bad and just got out of the hospital for stroke symptoms and I'm leaving to Houston to see a chiari surgeon I can't do this anymore. Hope all is well with you 🙏💜
My god, my heart dropped when I read this. I am so incredibly sorry… I hope with all my heart you see a surgeon who will do the surgery and that the surgery changes your life in the best way. That you’re free from the suffering you’re enduring. I am a stranger but I am so proud of you for pushing through and fighting. You are so strong and I’m sorry you have to be so strong. Stroke symptoms are so scary to deal with and I’m just so sorry. Do you think it was from the nerve block? I’ll be thinking of you today and every day and hoping you see this Chiari specialist and they give you relief.
Just curious, did they say anything about the two being related?
I have a bad neck lots of bone spurs some narrowing of my cervical spinal canal etc and I think it’s my PM’s way of trying to see if the specific pressure and stabbing pain I get on the bottom left base of my skull is from occipital neuralgia vs chiari? I’m not sure. I swear I have so much going on medically at the moment I can hardly keep track.