What do you do when you have taken your meds plus the prn meds and you still feel like someone is hittimg you in the head with an ice pic you have twitching in your eye and its setting off headaches , ie migraines, and you want to scream but your not quite to the point that you’re ready to go to the er? Does anyone have any suggestions. Btw I have the vns for occipital neuralgia in sept. And an mri for the bi lateral tn in aug. Gamma knife for the right side was done on may 1 no change yet.
Sorry I think I meant pns
Hi Ouchie - I take care to not strain my neck in the slightest, i.e. carefully supported recline, and treat it, too, along with the skull. Anything that helps me with inflammation and pain from head&neck trauma (&c-spine deterioration) will take fuel away in my experience. Not sure how that would be for someone with TN1, but my worst ever flare cae from joint irritation that spread inflammation along the nerve and escalated into pure hell.
I also go for popsicles, maybe for blood vessel contraction in the area?
I have tried NSAIDs, topical application, next to no effect, but heavy duty liniment helps some, maybe it helps decompress where it starts for me, by the ear. I use it large surface, too, because it helps me with nausea, headache, etc.in addition to the cervical nerve root compression/inflammation.
I constantly scramble for things that work, and somehow, they do emerge. I have found that leveraging many such things together can have a profound enough effect on most conditions to make it worth exploring. TN is just the most extreme condition in my experience. Only a smart combination approach gets me off the cliff.
Have you tried any anti-inflammatory agents? if so, do they make any difference for you? The biggest impact from any one single agent I have had was from cortisone. By itself that would not suffice, but without it, all my other quivers don’t amount to nearly enough to turn things around.
P.S.: I don’t know what pns stands for? I had read you as referring to pro re nata medication, to be used ad hoc, at patient’s discretion, analgesics, presumably.
I might have the letters wrong its that thing where the electrodes are putto the nerve and then the box is implanted in the chest to desensitize the nerve and reduce the pain for the occipital nerve
Oh, gotcha! I only have experience with the external use, TENS, and other modalities. Helps some at the occipital ridge - stop-gap though it seems to me… Are you using an implant neurostimulator?
Come to think of it - have you tried cold laser therapy on the occiput?
For something that continually gets triggered / reaggravated (e.g. cranio cervical trauma sequelae, permanently damaged/dysfunctional joints) it is not a fix, more a temporary injunction, astonishing regardless.
I have tried the external tens unit not much help. My occipital neuralgia went pretty much untreated for quite some time due to my prior neuros lack of knowlege of the condition as well as TN so the pain has gotten worse over the past year. My first neuro ws excellent but I moved and had to find a new one thru trial an error hense my prior neuro and the switching of someof my meds. My current neuro is much better, he has gotten me back on meds that work a littlee better and continued the first neuros treatment thru her notes and my records, and my surgeon at MUSC is paying close attention to my medical records from Dr Fukushima, my previous neuro surgeon, (excellent surgeon) and is taking measures to relieve the pain and went thru all the options so I am following his advice as to which procedures would be best. But it is a bit of a process trying to get insurance to approve things.