For over a week now, I have been experiencing dull, constant pain in my upper neck, the base of my skull, above my eye and behind my eye (all on my right hand side). About a month ago, I had the same on the left, which lasted around 2 weeks. This time it’s crippling - I do have a UTI, so it’s likely to be a relapse, but has anyone had anything like this? Could it be occipital neuralgia?
Any help gratefully received!
Sarah
I have it permanently on my left side. It’s less intense now than it was. it started a year ago along with my C2C3 lesion and it was unbearable then. I take pregabalin and am managing to reduce the dosage now. I’ve had 3 neurologists, 5 opticians and 1 ophthalmologist look at my eye and they all say it is fine. The neck/headache is awful, worsens when I lie down and by the morning I want to cut my own head off. My ear hurts too. No one is particularly interested though and they seem doubtful that it is caused by the lesion. Never heard of occipital neuralgia as a thing, but presume it just means nerve pain in your head? Off to look it up, but be assured, I share your pain, hope it goes soon x
Just looked it up and that is me! Thank you so much, now I can see if anything can be done xxx
Glad I was able to help! I’m no nearer getting an explanation, but seeing MS nurse on Friday so I’ll let you know what she says.
Sarah x
They just tell me to take more pregabalin, but I think as mine is worsened by lying down, then it must have an msk element so there has to be a specialist physio who could help, or a nerve block or so.etbing.
I have similar on both sides left worse I get intense headaches from kneck over my head to back off head pain clinic consultant tells me I have three damaged nerves near base off scull I also brain stem lesions I have ppms .
This describes what I have had for around two months…worse laying down too.
GP has said Sinus pain, Migraine and or stress…nothing to do with MS however like me he is just guessing and trying to get me to go away !
However it has worsened and increased plus I now have much more weakness on same side ( left for me )
I have taken Gabapentin for years and upping the dose makes no difference, nor does any other pain medication.
My eyesight however is affected and is blurred but Opthalmologist has been unconcerned.
Hi Sarah,
Your symptoms are exactly the same as mine and I am diagnosed with Occipital Neuralgia.
When I have a flareup, I use a combination of dark lighting (no cover the eyes, no noise and ice pack the neck (usually a bag of peas or corn, because they conform easier).
Once my skin is very very cold, I have DH or DD rub the base of my skull where I “knot” up. They have to stroke downward very firmly.
I usually fall asleep for a while, wake up and start the whole thing over again. Takes about 3-4 hours, but then all the pain/nausea/dizziness is gone!
Also, i’ve been using this Occipital Neuralgia pillow for a few months and I wake up with less pain when I sleep on it.
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To anyone else with this condition, I advise you to keep trying to find a solution. Even if it only lessens your pain by 10%, it can be worth it.