Occipital Neurogia, a complication of neuropathy?

Posted by Goaway @nemo1, Mar 21 3:47am

That is what my neurologist called it. Then it happened repeatedly. Lightening pain type sensation radiating up right neck into ear

Then it happened two days following that for a couple more days is the same quality of pain running up the back of the head also several times. Back right.

I just tried to fall asleep @ 3:30 am (new med keeping me awake) and within a minute or so I had the same pain into the back right of head only this time with my eyes closed I saw a flash of light. Almost like a round rainbow.

I told my guy who thought it might be med related (but this pain preceded medication/new)…

Btw, I put a note in to my neurologist about this.
I don’t want to wake him up, but I’m afraid to go back to sleep

Thoughts?

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I have small fiber neuropathy in neck and face. I also have occipital nerve pain as you described. They don't know what is the cause but I got occipital nerve block in back of head and I feel much better. If course condition is not gone but feel better.

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@camoriello

I have small fiber neuropathy in neck and face. I also have occipital nerve pain as you described. They don't know what is the cause but I got occipital nerve block in back of head and I feel much better. If course condition is not gone but feel better.

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My occipital nerve block made things so much worse! I am wondering if the nurse hit a nerve.

I have been given various diagnoses- the list is long- but neuro has not specified "small fiber" only "neuropathy" (and paresthesias, spinal/cervical/lumbar stenosis, myelopathy, rediculapothy etc. etc.).

I am having severe neck symptoms and face is always numb on left side with a variety of triggers. I'll have to look up "small fiber neuropathy"!

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@windyshores

My occipital nerve block made things so much worse! I am wondering if the nurse hit a nerve.

I have been given various diagnoses- the list is long- but neuro has not specified "small fiber" only "neuropathy" (and paresthesias, spinal/cervical/lumbar stenosis, myelopathy, rediculapothy etc. etc.).

I am having severe neck symptoms and face is always numb on left side with a variety of triggers. I'll have to look up "small fiber neuropathy"!

Jump to this post

I feel foe you. I also have cervical spine issues, arthritis in neck. I'm going for neck therapy ti see if helps. Most of my pain on left side of face but also right. I'm on 2400 MG of gabapentin. They cannot diagnose it or know source. I have TMD as well which can cause face and neck pain. I have not been diagnosed with migraine. This has been over a year but nerve block helped and meds help. I get face flushing but I think that could be subsiding slowly. Keep trying anything to help.

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@camoriello

I feel foe you. I also have cervical spine issues, arthritis in neck. I'm going for neck therapy ti see if helps. Most of my pain on left side of face but also right. I'm on 2400 MG of gabapentin. They cannot diagnose it or know source. I have TMD as well which can cause face and neck pain. I have not been diagnosed with migraine. This has been over a year but nerve block helped and meds help. I get face flushing but I think that could be subsiding slowly. Keep trying anything to help.

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I cannot tolerate gabapentin at all unfortunately. Glad you can!

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@windyshores

My occipital nerve block made things so much worse! I am wondering if the nurse hit a nerve.

I have been given various diagnoses- the list is long- but neuro has not specified "small fiber" only "neuropathy" (and paresthesias, spinal/cervical/lumbar stenosis, myelopathy, rediculapothy etc. etc.).

I am having severe neck symptoms and face is always numb on left side with a variety of triggers. I'll have to look up "small fiber neuropathy"!

Jump to this post

@windyshores
Have you had surgery for your myelopathy? Maybe your cranial/cervical nerves/spinal cord are impacted? I have SFN (skin punch biopsy of thigh/calf confirmed idiopathic severe nerve damage), C5C6 cervical spondylitic myelopathy (had ACDF surgery), cervical/lumbar severe congenital spinal stenosis and radiculopathy, DDD, hearing loss, and have had facial nerve pain/rashes (something aggravating original nerve?). I have pain, weakness, numbness, pins/needles (sometimes feel like nails being hammered in) and my cervical myelopathy caused headaches, neck pain, arm/hand and leg/foot impact plus bladder (urgency and loss of control). The ACDF surgery helped some but some of my symptoms are worsening so I am hoping a new neurologist will help diagnose me (rule out MS/CIDP) and help prevent worsening symptoms and irreversible nerve degeneration.

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@dlydailyhope I have not had surgery, but we are discussing this. It has been a bad week!

I have 7 spinal fractures, osteoporosis and scoliosis. Lumbar and cervical stenosis, and spinal cord damage. Paresthesias, neuropathy, myelopathy and radiculopathy are all on my problem list as well as lupus and possible scleroderma. Vestibular vertigo. Occiptal and trigeminal neuralgia. Facial numbness is getting worse.

My neuro jokes that I don't need any more codes on my problem list!

I can't tolerate much in the way of steroids but took 6mg and tapered along with baclofen, tylenol and one flurbiprofen and lots of BioFreeze. I am always scared that an episode will be permanent!

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