Occipital neuralgia : Just wondering if... - Migraine Support

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Occipital neuralgia

weegmack profile image
6 Replies

Just wondering if anyone on here has occipital neuralgia? I’m on an 8 year journey trying to get to the bottom of constant neck pain, terrible headache and mild dizziness.

It’s becoming debilitating and I am extremely depressed. X

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weegmack profile image
weegmack
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TheHud profile image
TheHud

Sorry to hear about your pain Weegmack, it is horrendous. Have you been officially diagnosed with ON. We are rare birds and even when diagnosed they don't like 'diagnosing' us. If you are from the UK they don't even have a NICE patheway for us, infact it's not even mentioned. In reality they need to get to the reason why we have it to resolve the problem properly. I have had some relief from Topiramate while they figure things out but I still have a constant hangover.

Two days ago a new neurologist did an assessment and went straight for my greater occipital nerve to trigger pain. Oh boy he triggered more than pain. I had to hit the lyrica when I got home he triggered every kind of radiculopathy kind of shooting monster pain I had managed to control for over two years. Fortunately I avoided the pneumatic drills through the head and have just got increased pressure from the creeping vice, with a very painful neck etc. Upped topiramate and lyrica seem to have headed it off at the pass.

Have they investigated you, MRI, MRA, blood tests for inflammatory conditions etc.

Things like spondyloarthritis, antlantoaxial instability, swollen blood vessels trapping nerves.

What treatments have you tried?

X

weegmack profile image
weegmack in reply to TheHud

Thanks so much for replying! I’m so sorry you’re suffering so much. I haven’t been officially diagnosed, but I seem to match all the symptoms. Though I would say my symptoms wax and wane. I started 8 years ago with a dizzy headache and sore neck. Thought it was flu, but the headache never went away. It always started with neck pain and just got worse and worse. At times I was totally debilitated by it. My right eyeball often felt it was going to pop out, the pressure in my head was unbearable, my neck pain was dreadful. Not even Tramadol worked for the pain. My entire face gets sore, as does the roof of my mouth, and I get a horrible, creeping sensation all over my scalp, stabbing pains in my ears....😕😕😕. I get dizzy spells too.

I still have all these symptoms, but I go through periods of it being bearable and periods of it being unbearable. I’ve had neck x-rays, a brain scan, blood tests, hearing tests, seen a neurologist who thought it was merniers 🙄 and I was even seen by a rheumatologist. My GP does not know what on earth to do with me. I was given Amitriptyline (antidepressant, used off-licence for pain), but it’s only really helped to manage it, rather than cure it. When I wrote the original post, I was going through a terrible spell of pain.

I’m in Scotland, so our guidelines are from the Scottish Medicines Consortium (SMC) - no guidelines for ON. I’m so tired of being passed off as a pest who has “migraines”, when I’m never free from pain. X

TheHud profile image
TheHud in reply to weegmack

Has anyone ever pressed your occipital nerves, its a dead give away. trust me if you have occipital neuralgia just going near them sets things off if its the lessor nerves. If its the greater nerves and they poke it, you are in pain land..

Xrays don't often say much unless people know what they are looking for. ON is a rare form of headache and without a the test on the nerve, its not diagnosed. To be absolutely diagnosed it requires a nerve block to see if it eases the symptoms. There is also cervogenic headaches. Generally speaking opioid meds don't work for any kind of nerve related pain, you need neuropathic meds. GPs are not keen to prescribe things like topiramate but you never know. However, giving a med like this a try reuires calm commitment and a very slow build up. Many people, in my opinion, give up at the first side effects, which can be very odd.

Good luck :)

weegmack profile image
weegmack in reply to TheHud

I never had any test on the occipital nerve, because my GP literally blew me off when I mentioned it 🙄. I also brought up the notion of it being cervicogenic, but the response was “well, yes I suppose it could be”. All the GPs in my practice are hopeless with this. Once something sinister was ruled out, nobody was interested. 😞

TheHud profile image
TheHud in reply to weegmack

Have you been referred to a pain clinic, or a neurologist, anything for any firm diagnosis of migraine and type? Our sons partner was started on topiramate about 3 months ago, she is still on a low dose of 25mg per day and its helped a bit, I suspect she has cerviogenic or ON too, but like me she has some cervical spine instability, she is hypermobile. So maybe you could just come straight out with it after printing off the drugs suggested by the NHS, put this under your GPs nose. This leaflet guidance puts Topiramate at the top of the list. ;)

nhs.uk/conditions/migraine/...

Also get copies of all your hospital records, inc scans etc. They may tell you more and remember GPs have a nasty habit of not remembering who you are from one appointment to another and never read letters properly. So its best you have copies of everything and carry them around with you, ready to have in your hand whenever they may be looking for something onscreen. So you know what they should be looking at ;)

Treat every appointment as a business meeting, approach with clinical care and be ready with all your ammo and back up material incase you need it. Sometimes just walking in looking like you mean it will work. Its only taken my 20 years to work this out! Mind its only this year the NHS has realised that joined up systems and doctors is not working and suggests every patient becomes their own advocate, gets their own records and manages their own conditions. They call it patient empowerment lol

This started back in 2017 england.nhs.uk/digitaltechn...

Now its 2019 and they are trying to work on a new 5 year plan because GPs would not join up properly, got in a fight through their control of the CCGs (release health records, grab funding, privatisation and talk to hospitals) so NHS England, used the changes to the data protection act to make hospitals and GPs give us copies of all our records free on request. nhs.uk/using-the-nhs/about-... It's worth noting that the original 5 year plan to 2019 inclusive, only actually started in 2017 but somehow they did that mathematical trick of including 2016 retrospectively and then counting 5 years in that gap, they don't actually mention any years beyond 2019 lol

The new plan is more about the patient taking full control of their own health and the medics should be helping us do that. Here is the plan for the way your appointments with your doctors should go. All GPs have been trained at great cost to the tax payer. england.nhs.uk/shared-decis...

xx

weegmack profile image
weegmack in reply to TheHud

Thanks so much - I will get hold of my scans and X-rays. It’s amazing how many GP’s just don’t want to help when they don’t know what it is. I’ve had no definitive diagnosis ever. Nobody can tell me what’s causing the pain. I asked to be referred to the pain clinic, but I was told I wasn’t eligible! 🙄🙄🙄