Hello 👋 Does anyone here have Occipital Neuralgia?

[Ubud2021]

I am new to this group. I’m 27. I have had chronic migraines and chronic neck pain for 15 years now. I’ve been on quite a few things with no luck of relief. 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. My neck pain always starts in that same spot, then shoots up to my head. One of the first steps I want to try, is a nerve block shot. Has anybody had these before?

[ZeN01]

Hi.... I have pain in my neck and my spine for which I had surgery last November the op didn't work but with what's going on now every thing seems to have stopped.... I had the blocker to start with and again it did not work but for some it does... Like you I have really bad headaches i have been given all types of pain killers but they just don't seem to work... I wish you well if you do try the blocker I have bought a neck massager which while it's on helps (ebay) I will try anything. Good Luck... Keep smiling

[Bubba48 in reply to ZeN01]

Try Tylenol?

[Ubud2021 in reply to Bubba48]

Me try Tylenol? I have definitely tried everything. Ha

[Ubud2021 in reply to ZeN01]

Man I am so sorry! That is terrible. Have you tried ketamine therapy for it?

Thank you for the neck massager tip!

[Entela15]

I have the same symptoms as you, pain on my neck which spreads on the back of my head and on the sides. It's debilitating. I saw a neurologist last year who was very dismissive and said he can't do much for me since I suffer for fibromyalgia. He discharged me because I already see a pain consultant. If you have any luck with nerve block injections please let me know. I'd like to try them too.

[Ubud2021 in reply to Entela15]

Oh wow! How inconsiderate ):

I am so sorry about that! I hope you figure something out! Have you tried getting a second opinion from a different neurologist??

I will definitely let you know if it works for me or not!

[Panda05]

I also have occipital neuralgia I had the nerve block done but unfortunately it didn’t work and now it has spread from one half to my whole head. It’s a 50/50 shot if it’s going to work.

[Ubud2021 in reply to Panda05]

Ugh, i am sorry to hear that.

I will give it a go anyway because I am so desperate and in pain. If it doesn’t work, hopefully he can figure something else out. ✌️

[Ubud2021]

I have been to the chiropractor with no relief, as well as professional massages. I do get a lot of knots in this area. :/ I’m sure you guys have tried other remedies such as me, with no luck. I see this neurologist/pain specialist next week on the 29th. I know that my biological father had pain in the same area and had to get surgery for it. I’m not exactly sure what procedure it was, or the details. Hopefully it doesn’t come to that. I know you guys have tried just about everything you could think of.

I don’t know how most of you feel about this subject... But, In my state, medical marijuana is legal. That seems to be the only thing that brings me some sort of relief. It does of course have to be certain strains. Where you are, if available, and if your moral beliefs agree, I would highly recommend looking into it. As in my case, not all the time does it fully relieve all my symptoms, but it definitely takes the edge off, leading to being more functional.

[Hidden]

I had the shot it lessened it for a few days but hurt my gut. Are you doing neck exercises to help? And thoracic spine exercises? I have weak neck from injury and fibromyalgia. If you practice cobra at resting times or Sphinx position throughout the day you may find this helps. Also upper back exercises your traps and neck muscles maybe weak & tight trouble with your muscles upper back tight pecs. A Chiro can help undo the knots with active release therapy and suggest exercises but the best bang for you dollar is to hire a kinesiologist to look at your mechanics. If you start looking on line at very slow neck movements the chin tucks the chin to armpit wall angels using a ball on your traps and spot right in crook of neck and leaning against the wall with your shoulder pushing your torso into the wall and oddly you may need to work on your bridges. Be careful with overhead work and leaning over. The base of your skull is getting too much tension because it’s weak and all those other muscles are too & overcompensating also using palm of your hand on cheek resistance into it. Chiro is useful for some of these and active release therapy but essentially it’s a daily regiment a few times a day. The shit may help with the inflammation as you’re trying to do so. I lost a chunk of my hair in that spot when I had the shot. I find even jaw tension exercises help too. Tylenol doesn’t do enough I’m sure you’ve used Advil that’s really more useful or flexeril muscle relaxant type meds better. You’ll know if you do the exercises and get worse for a bit that you’re overdoing them and what you did that day. It’s a nightmare when it gets worse gotta keep that core strong. I know you know a lot for how long you’ve had it. Those of us with spinal injury know the pain and how long it takes to keep at it. I go in cycles got laid up again long time and back at square one. I hope you get relief it’s worth a try. It numbed it for awhile it lasted about two weeks max. Steroids are not good for you and can cause deterioration so the exercises are very important.

[Ubud2021 in reply to Hidden]

Thank you for your reply!

I am a big “Yogi” so I do some neck stretches everyday to help relieve some of the tension. I also have done multiple strengthening poses as well. It doesn’t seem to relieve my symptoms.

I have seen a chiropractor in the past, with no luck, unfortunately. I have also done multiple massage therapy sessions as well.

I will look into kinesiology. Thank you for the tip! I am sorry to hear that you have lost hair where the shot was done. That is definitely an issue I will be worrying about, but yet again, am so desperate for the pain to stop. And yes, the first step to pain relief is always over the counter things! Til this day, I still always take Tylenol and aspirin in hopes of it relieving some, with no luck. Also, I have been on the muscle relaxers as well with no luck.

Thank you so much for the tips! Have a great day

[Hidden]

Ok. Another thing you can try is taking high doses of riboflavin b2. A neurologist specialist told me to do this. I just can’t remember the dosage i had to stop due to my gut issues from pain killers & stress.

[armao]

Hi, I’m in the UK and recently had a nerve block for Occipital Neuralgia and it’s WORSE than before, with cluster migraines thrown in for free.

How are you coping now?

[armao]

Hello. We’re very different yet the same! Ihave had 7 years of unremitting pain from Occipital neuralgia and cluster migraines.

I recently had a Nerve block and unfortunately for me it was disastrous.

My pain worsened and the migraines increased.

Now, some people get relief but do your research and even then it’s a gamble.

I am 73yrs so you may stand a better chance …. I hope so.

You can have Botox Injections and I have trigger point injections which have helped a little….

If you need any further help please feel free….

I wish you pain free days and peaceful night.

[reg01]

Do you get swollen muscles sides of your neck from neck tilting and spasms?