Hello 👋 Anyone here have Occipital N... - National Migraine...

National Migraine Centre
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Hello 👋 Anyone here have Occipital Neuralgia?

Hecate930
Hecate930

I am new to this group. I’m 27. I have had chronic migraines and neck pain for 15 years now. I’ve been on quite a few things with no luck. Even all of the new once monthly injection preventatives. Most of my days in the month are included with migraines. My doctor told me there was no more she could do, and referred me to a neurologist/pain management specialist.

Within the past few weeks, I have done a little bit of research about the pain coming in at the base of my skull, off to the side. It came up with a few things, with Occipital Neuralgia being one of them. I looked into different stuff, but Occipital Neuralgia just seems to explain everything perfectly. One of the first steps I want to try, is a nerve block shot. Has anybody had these before?

26 Replies
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If your on Facebook, join the following groups.

Journal speak with Nicole Sachs

Pain free you

PPD association

Sirpa

Curable

Also visit unlearnyourpain.com

Actually go straight to pain free you and do the self assessment.

Thank you for taking the time to write these out for me. I currently do not have Facebook. But when I re-open my account, I will look into these groups. Thank you 😊

Yes I've had nerve blocks, I'm surprised they weren't suggested to you because they're a fairly standard treatment to try. I had some good results with them, they didn't last particularly long - a month I'd say, but some people get longer effects. I'm now getting better results from Aimovig, but may start to combine with nerve blocks to see if I can get an even better outcome.

Hecate930
Hecate930
in reply to Claire27

Oh how nice! This is such a relief to read. I guess this post has posted twice, and everyone’s comments about the nerve blocks on the other post, didn’t seem to work for them. I’m happy it worked for you!

As far as it being a normal procedure for neck pain, -lets just say the doctor I have seen for years for my migraines, wasn’t very concerned about them. Ha. he was pretty rude to me every time I went in. He was one of those doctors that the word “licensed medical doctor” got to his head affecting his ego. Finally, this year I switched to a different doctor at the same clinic, and she just said neck pain with migraines are normal. Listening to patients fully is not one of their strongest qualities 😂 haha

But I am so glad you found something that has worked for you. Thank you for sharing!

Hello Hecate. I'm sorry to read that your own doctor has given up on you. Is it a GP or a specialist? Just don't accept this. Keep on informing yourself and look for another doctor. Did they do any checks on your neck? MRI? (forget about Xrays, it never really shows anything). You don't talk about other kind of approaches you may have tried. Chiropractic for instance? They can tell you if your neck is under any strain? Did they do an MRI of the brain?

You're saying that you have been referred to another specialist and I think that it is good news. Just be patient.

When it comes to the nerve blocks, it depends which ones you're getting. I have issues with my neck and they gave me GON block injections which totally failed. I was told that there are several possible reasons for this. First one, the practitioner was useless. Second one, it may take 2 or more repeated injections before it works and third one, GON block target the pain coming from C1-2-3 (I believe) and your pain could be coming from lower. But because the headache doctor I have been seeing until now is convinced that migraines explain all the pain and aches in my body, he is not willing to take a side approach and he is trying to convince me that when I am on top of my migraines (which won't come soon), all my problems will disappear. Yeah, right! I have seen a different specialist and I am now waiting for a neck MRI. Good luck!

Hecate930
Hecate930
in reply to Chleo11

Thank you so much for your post! I guess this post has posted twice in this forum for some reason. In the other one, I did state I have seen a chiropractor and massage therapists multiple times, in the comments. (And of course it doesn’t show on this one.) haha

Yes, I have seen I believe 3-4 different doctors about my migraines and neck pain, but all at the same clinic. My first doctor I saw for them, ended up quitting due to wanting to be a full time mother. The second one, that I saw up until this year, was very.... I don’t know the word I am looking for here. I am going to copy and paste from the comment above. -lets just say the doctor I have seen for years for my migraines, wasn’t very concerned about them. Ha. he was pretty rude to me every time I went in. He was one of those doctors that the word “licensed medical doctor” got to his head affecting his ego. Finally, this year I switched to a different doctor at the same clinic, and she just said neck pain with migraines are normal. Listening to patients fully is not one of their strongest qualities 😂 haha

So they have never checked my neck out before. They have never given me a MRI either.

It is a very hard thing to deal with for sure. I am not sure what kind of nerve block the specialist will be giving me. My appointment with him is next week, on the 29th. I am sorry to hear that the nerve block has not worked for you!! And also that all your remaining problems would disappear? Non of that makes sense and is very frustrating. I am so happy to hear that you have found a new specialist!! Exciting news!! I hope the neck MRI gives you the answers you need! Keep me updated please! (: I would really like to know!

Chleo11
Chleo11
in reply to Hecate930

Hi Hecate. Thanks for your reply. Have you ever listened to the Podcasts by the NMC? nationalmigrainecentre.org....

They are certainly worth listening to. It helped me clarify a few things.

Yes, doctors can be so blazé and don't want to listen to you. The issue is that with migraines being so common (18% of women), as soon as you get the diagnosis, you're stuck with it. They don't want to look further for any other issues. Mind you, I am not saying that getting rid of our neck trouble will sort out our migraines but if it makes our lives just that little bit better. Is it too much to ask? The main issue I see is the day to day management of our condition. Nobody is there to help. Contradictory info from Doctors, pharmacists, websites and forums. For instance, you're not supposed to take more than 8 triptans a month but by definition, chronic migraines mean more than 15 days of pain a month. To add to the confusion they say you are not supposed to let a migraine go for too long without taking a triptan, or you risk having to to go to Emergency. So what? The preventives don't work! They don't believe you when you describe the side effects or when you say you keep the triptans down to the bare minimum.

One of the head doctors I see wanted to prescribe Topiramate to me last time, saying that the bonus is that it keeps you slim! Was that sexist or what? By the way, I am not overweight. Because when you have chronic migraines you worry about how you look! :(

The new specialist I've seen excluded straight away Topiramate, saying that 1/3 of patients show very adverse reactions.

In your other thread you were mentioning medical cannabis, which is not available here. Any info you could share on this? Would be great. And yes, do share with us any interesting info you may have. Here, everything is stunt because of the confinement.

Have a good weekend and take care! ;)

Hecate930
Hecate930
in reply to Chleo11

Hello (: no, I have never listened to that one before! Thank you! I will definitely check it out!

And right? The whole triptan thing is just crazy. And every time I do go in, they ask me if I have taken anything everyday to help with the migraine. Haha it’s like...?!!?!?!

And yes, I was prescribed a high dose of Topamax, but I couldn’t even speak or respond to anyone who was talking to me because I could not remember any words. The only dose I can tolerate is a 50mg dose. Which I am still taking.

Saying it will “keep you slim” is not up to the doctor. Sorry to hear about your experience.

And yes, I will try to post some more information here on this post about medical marijuana for you (: it has helped me greatly.

Thanks for taking the time to write me back! Have a great day!

Hecate930
Hecate930
in reply to Chleo11

Here is a website that talks a little more about marijuana, and the best strains for pain. Once you get to the site, it’ll ask if you are 21 or older.

leafly.com/news/strains-pro...

Hecate930
Hecate930
in reply to Chleo11

I have noticed, that for me, since I do have severe anxiety and panic disorder, I need a CBD dominant strain. It does talk about some THC dominant strains. Just something to keep in mind.

If you have heard the terms Indica or Sativa, this is where the CBD dominant strains, and THC dominant strains come in.

Like I said, for most anxiety folks, we need INDICA strains. That are CBD dominant.

Hecate930
Hecate930
in reply to Chleo11

Also, if you have any form of schizophrenia, STRAY AWAY from ANY THC!!!

Chleo11
Chleo11
in reply to Hecate930

Hello. Thank you for all your info. Will follow this up. Need to, really. Yes, I've already heard about the different strains. When it comes to schizophrenia, well, sometimes I wonder. I don't know if you've watch the latest Migraine World Summit but they have now scientifically proven that the brain of migraineurs is physically different. Has to do with the Amygdala, which is how your brain processes emotions. There are 2 sides to the Amygdala and in migraineurs, one side is bigger. This leads to what they call the 'catastrophising' migraineurs tend to do: anxious, panicky, 'nothing will work!' and 'I can't cope with this!'. But the good news is that they have seen this size difference being reduced in some migraineurs who are practising daily mindfulness and meditation.

You take care! :)

My doctor did the same thing to me.

Passed me of to the nerologist. And I have been doing a nerologist for years and they never really helped. Yes should see a nerologist maybe things will be different for you. They usually have you try medications which have side effects. For me it was my chiropractors and physical therapist that helped me the most. Also doing alof of research online got me where I got today. Ask for an MRI and your brain and neck. And even if they find nothing don't be discouraged it doesn't mean there is nothing wrong. A chiropractor and physical therapist see things differently than doctors. Also you can try peppermint oil in a wet face cloth and put on your head during. Migraine it helps. Also if you don't mind spending money they have supplements for migraines in the market. Insurance will probably pay for individual vitimins but it just so many pills so many times a day it's over whelming . They do have supplements on Amazon that have all the vitimins used for migraines in one pill. Ex. Headachefree multi vitimin, my brain, migraine defense, migrelief. Just search migraine supplements... I had to try several to find the right one that didn't give me side effects.. and it was worth it. It took away 85 present of my migraines. Good luck!

Thanks for replying (:

Yesterday was my appointment with him. He scheduled an MRI, prescribed physical therapy, gave me a few samples, and put me on a medication that will hopefully help for my pain. On May 19th I have my nerve block shots. If that doesn’t work, there is a procedure that can be done with the highest success rate. He goes in and cuts or untangles some of the nerves. (I can’t remember what exactly he said due to my migraine) So, soon enough I will find some relief!!

Thank you for the great tips! I will check out the supplements. Which one do you take?

Hey I'm glad you had your appointment! Sounds like your doctor is one top of it. I take headache free multi vitimin. I had acid reflux with the other brands.

I recently started going to physical therapy again and this time around it has been more helpful. They use to massage my neck and it helped but I would still get headaches. This time around I'm actually doing the exercises they prescribed and it has helped so much. I use to always have to take my rescue prescription medication to make it go away but now it's going away on it own. So do the excerises! They may look funny but they work.

I hope the nerve block works for you! Glad you have options.

Also I wear prescription light sensitivity glasses (thera specs online) and a bucket hat and it helps ALOT with light sensitivity.

Also on YouTube Bob and Brad "the most famous physical therapist on the internet" have good videos for headache relief.

Thanks! I will have to try the supplement!

That is so good the physical therapy is finally working out for you!! I will be doing all that I can!

You are full of amazing suggestions! Seriously, thank you so much! Most sunglasses don’t work for me, so I will check those out as well!

You’re awesome. I appreciate these posts. Have a wonderful night 💕

Do you get an electric shock type pain at all from base of neck to the side of your head it's an awkward pain to explain but when my occipital neuralgia is bad that's how it feels and horrific light sensitivity xxx

Yeah! That’s a great way to describe it! I didn’t know how to put it into words for my new doctor. I just said stabbing and throbbing pain. But yes, it just kind of vibrates the whole area!! Sometimes I feel like deep in my ears also have this weird “vibrating” sensation. Do you have that??? I don’t know how to better describe it.

And oh yes! Very sensitive to light. And noise especially. I live with ear plugs in. Sometimes, with sunglasses on even with the blinds/curtains shut. It’s honestly so terrible. Get very nauseous and vomit.

Hi Hecate930, I have severe brainstem migraines with hemiplegic features brought on by a chiropractic accident that caused occipital neuralgia. I now see an Orthopaedic Physiatrist to treat my O.N., a Neurologist for the migraines, and recently have brought in the Neurological specialist at the university migraine clinic to assist in treatment as it took me 6months to recover from my last migraine that caused severe vertigo for 6 weeks followed buy O.N. lasting for about a year (off and on with botox injections). I nicknamed the jarring pain "baby rattle brain" because my head felt like one as the most severe pain this time traveled up the left side of my head to my left eye and across the head involving the auricular nerve. (I couldn't drive for 6months due to this!)

So with how messed up I've been I would say to anyone else experiencing this type of nerve trauma to seek out an Orthopaedic Physiatrist whose job it is to specialize in complex cases. Advocate for yourself, and bring a partner to help. Try massage, acupuncture, and meds like gabapentin may help. I wish you the very best! You're way too young to have to go through life with this pain, so build yourself a treatment team to face this rare and complex issue with.

Hello! Thank you for your informative reply! I’m so sorry to hear about your accident resulting in Occipital Neuralgia! That is terrible! And it seems like you have an amazing team lined up by your side as well.

That is a great way to describe the pain! My appointment was this past Wednesday, and I couldn’t really figure out the best, comprehensible way to describe my pain. Definitely is a stabbing and throbbing pain, so I only stated those two things. But someone on one of my other posts, had said she feels this kind of “electronic buzzing/zapping” kind of feeling, which better describes my pain than “stabbing”. It feels as if I’m having this electronic vibration in my neck, in the inside of my ears, and eyes as well as wherever the pain is in my head. I guess I’ve had a hard time describing the pain, because my regular doctors have never asked such a question. Which results in me not knowing of how to describe it. Ya know?

And great advice about the Orthopedic Psychiatrist. If all this fails, I will definitely seek one out. As for methods of finding pain relief, I have done multiple massage therapy sessions, with no luck. I mean, of course my body felt less stressed, but never helped my chronic pain. I’ve also wanted to try acupuncture for the longest time! When I lived in Colorado, i had finally found the courage to do this treatment. I found an acupuncture clinic, went to it, and walked around to the front of the building, for it to be out of business. After that, I thought maybe I shouldn’t. Haha. And I have been on gabapentin!! I basically made my doctor give it to me. As I have read that it helped a lot of people suffering from chronic migraines. At this time, I did not know anything about Occipital Neuralgia, just the chronic neck pain and migraines. The doctor I was seeing, just didn’t want to prescribe it to me. But finally, after a long hour, I brought it up one last time, and he had prescribed it to me. I did notice a decrease of symptoms! But, it made me gain a significant amount of weight very rapidly. I felt so bad about myself and body, I just couldn’t keep on taking it and gaining weight as fast as I was. So I stopped taking it.

I feel like I am finally in good hands now, with someone who actually cares and wants to help me with this. He is doing great things so far, that no one has ever seemed to care about. Such as nerve blocks, an MRI, physical therapy and prescribed me Nortripyline. He also offered Botox, but I’ve heard from the people I know, that the rebound headaches were way worse. And due to my extremely sensitive head, I am just too scared. Also, after the Nerve blocks, and if I “fail” physical therapy, he can go in and do another procedure that has one of the highest success rates. I had a migraine at the time he was explaining it all to me, so I felt disoriented and couldn’t comprehend much. But it was something like he either cuts or burns or untangles the nerves. Leaving almost most people with relief. So, I am happy to announce that I believe I am in great hands.

Thank you again for your helpful reply!! It’s so nice knowing others out there struggle with the same things, and will provide amazing suggestions. I hope you find more relief as well. This whole thing is so troubling. And if I couldn’t drive for 6 months? Wow. What would I do with myself. I’m sorry that has happened. Have a beautiful day 💕

Hi. I’ve had this procedure but sadly it didn’t help me though there are some success stories

So glad you're finally in good hands! Good, good, good on treatment! It's pretty traumatizing to go through this and not have good medical providers!

I have never had rebound headaches from botox. I didn't know it could happen? But then, mine are for the O.N. and maybe that changes the response parameters.

I did want to say that for me the nerve pain is so intense- especially when vomiting. It's like lightening zaps in my neck literally burning up the back of my skull and over the crown of my head. I never knew vomiting could hurt so bad! I did not think I'd recover! Then there's the non-migrainous daily zaps that zing across my head, and when it's really bad the zingers that sit behind the eye and my eye feels like it's bulging from nerve pain. This description for me was a way to get the physician to ascertain that it is nerves causing occipital neuralgia. Maybe a description in a similar vein could further help during treatment? Best of luck to you!

I have had great success with Cervical Facet Joint injections. My Dr does 6 injections at a time every week, total 3 times. I experience severe neck pain and excruciating headaches 24/7. The injections eliminate the neck pain and headaches. It sounds like I am lucky, the injections last about a year. I start again on Tuesday (last injections lasted about 13 months). Another item that I have found to be very effective is CryoDerm Pain Relieving Cold Therapy Spray, not a RX. Good luck!!

Hecate930
Hecate930
in reply to NCNANCY

Wow that is so nice to have found something that works so well for you!! And that long especially! That is awesome!

And thank you for the tip on the CryoDerm! I will be giving it a try!

Had my first round of the Facet Joint Injections this morning. Eek... I wanted to let you know that we found the CryoDerm on Amazon!!! Good luck, I know how painful this is.

Hecate930
Hecate930
in reply to NCNANCY

Oh jeez!! Take good care of yourself during this time! And thank you I appreciate that!

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