trigeminal nerve pain

[ceeceek]

Sorry to all if I have this under the wrong area....anyone have great suggestions for neuro pain re trigenimal nerve pain and if you have heard of it....vidian nerve pain and last but not least, nerve attached to carotid artery that affects the constriction of pupil or in my case....it does not constrict...auughh..hoping it is very temporary..cannot take nurontin..or lyrica...any one got great ideas....my cheek, side of my head and eye, feel like I have been hit in head with a bat......
Ceeceek

[nancyann]

Hi Ceeceek - so sorry you're having this problem, I just googled Trigeminal nerve, clicked on Wikipedia - sounds like a 'Trigeminal Neuralgia' (fancy word for pain).   I think you should see your neurologist - he/she can evaluate & prescribe something for you.   Very painful is what I briefly read.   
Best wishes,   always good thoughts to you,  Nancy

[Windsong]

Hi Ceecee,

Sorry you are having trigeminal pains! When i went to my neurotologist (who does An ops and discussed with me the various suregries and also radiation too) he told me one of the side effects from surgery could be trigeminal pain (I had fsr 25 days but now and then get some trigeminal nerve involvement in my An side) and at that meeting he said if trigem occurs they give neurontin... at the time i remember thinking oh oh i can't take neurontin so maybe trazadone would work if i needed something. Although we were speaking only about possible side effects at that time, i asked him about trazadone and he said it wouldn't be strong enough but i dunno....

Neurontin was the choice for many for this other neruro syndrome i had and it works for some but for me  it did not. So  without getting into details about a condition that has nothing to do with an An let me simply say that the trazadone i used for some time for that worked to alleviate tingling type spasms and quick jabs i had in my leg/foot. I have no idea if this could help with trigem at all but maybe run it by your surgeon? I assume you are still in the follow up care and can call him.

good luck
take care,
windsong

[ceeceek]

Thanks for the info...so far this is what I have found out...and for any of you contemplating surgery for your AN this could affect you as well.
I have a combination of Trigeminal and vidian nerve pain....Difference is trigeminal is pain stemming from corner of jaw....affects cheeks, lips, teeth and lower nose...more or less.
Vidian in this case, duhhhh tumor moment cant think of name.....oh well doesnt matter.....one of the primary vidian nerves, travel along the pathway that hits your temple......then pain will travel from temple along upper cheek and eyelid.......so around my eye, eye brow, upper cheek, and temple is where I have most pain...so far trigeminal is mostly numb....I will take numb over pain all day trust me....

Common treatment is antisiezure meds used for neuropathy pain similar to that of diabetic neuropathy pain....Neurontin, and lyirica are two most common types...unfortunately for me, I cannot take an anti siezure med as they can cause siezures....not common but they can...and are on the list of drugs I cannot take while I work...remember, I is a fireman.......

So for those whom may have similar issues my treatment so far is,,,,,,,prednisone....5 day pack....and oil of oregeno....remember I am fighting infection of lymph node to boot.......and primarily for nerves I am taking an enzyme called protease......there is lots of new info out in regards to the typical probiotic enzymes for digestion...now commonly found in Dan active and Activia.....these are similar,,,these enzymes would normally be received from our food,,,but we cook it to death....so it kills them.....These enzymes help with digestion as well, but are primarily for assisting our immune system in removing the protein that builds up during inflamation.....henceforth.....assisting with removing immflamation....or so I hope....affecting immflamation of the nerve linings is a little more tricky than say a sore joint....but am hopefull...
I am also doing acupuncture..which I believe will be of the most assistance...I just dont have appt till next week, so I suffer till then..although the herbs and prednisone seem to have helped somewhat...about 45% better..which really is huge improvement...
FYI, for those whom are interestied in some alternative or assistive remedies I am at your disposal...I am studying to become a master herbalist for a hobby in general, and though I am a long way from being an expert, I have a lot of resources available to me that most people do not......Herbs are great, and we are what we eat...but they should not be taken lightly...wrong thing can have devestating effects and they should be used with caution just like any other treatment....

For direct pain, I am using fioricett....bubalbital, caffiene and tylenol...my biggest worry is too much tylenol....have some toridal also, but have to wait long time between drugs if one doesnt work....fioricett so far works pretty well, but stinks at night...nothing like loading up on caffiene right before bed.....lol


Thanks for everyones help, and if any or you have other suggestions believe me!!!!!!!!!!!!!!! I am really open to ideas....it really really hurts......
Ceecee

[Windsong]

Ceecee,
I bought a vial of oil of oregano last week! And read up on it, Mine is made by "JOy of the Mountains" and they have a webiste with lots and lots of background on it.... i've been waiting to start it as i was on 3 wks of biaxin and then 2 of levaquin which are strong antibiotics and now that that is finished, i plan to run the oil of oregano idea by my gp and see what he says...

i'm all for less meds (meaning drugs) in my system so after reading that serious study is going on with oil of O. i'm all for trying it out...

Yesterday i found myself in a chinese town type "mall" complete with pagoda style buidlings and ended up buying a bag of fresh ginger for about a dollar lol... and after reading about ginger's antiinflammatory properties i am now figuring out how to eat enough of it to help lol...

i also take tylenol have for years and so far kidneys are fine but then i have times where i don't use it too...

mostly my trigem shows as now and then numbness... the shotting pains or aches are episodic and somewhat brief thank god...

temporary he says for a few years?  yup, we tend to think temporary is the length of an ordinary cold or flu... maybe yours will be more temporary.. wish that for you!

interestingly radiation is used as treatment for trigem pain... wonder if vidian is too?
you are planning to have ck right?

all the best,
W.

[ceeceek]

Yes I will follow up with CK....tumor is still unfortunately here....but smaller and now at least identified....I had to have the wierd one...part fibrous tissue....very rare, and part vidian nerve schwanomma...even more rare....of course!!!
yes they do use radiation for tri pain, but it is still in trial phase etc. and one of my concerns is that my treatment will make mine worse.....although Dr S assures me, he will be no where near the nerves.....
I am hopefull that Acupuncture will really help but am looking into other options just in case....so far I am taking fioricett.....a barbituate..mild with tylenol..but am worried of long term effects....glad you have been on tylenol for years with no ill adverse affects.....
Be mindful of the oregeno....although studies seem to be good, it is toxic, so follow directions from your brand exactly!!!!! do not mess around. Most people tend to think of herbs as perfectly safe and they are not......pharms take the plant, deduct the exact ingrediant that is effective, isolate it, study the crap out of it then synthosize it if possible and manufacture the then drug..when you take herbs, you are getting the whole plant essence and not all of it is good for you.....Oil of O can be toxic...the second main ingrediant in it, has no medical benefit and is very toxic so be careful. Your primary will probably poopoo it,,,,,maybe not ....they are becoming more open to ideas but this is strong stuff so be carefull. I was just telling Eve, look at cybersupport.org for the can of worms I opened re herb treatment...intersting stuff.
Thanks for the support as always, and I will let everyone know how the acupuncture works out. I have hgh hopes as I have used it for several things succesfully, but nerves are tricky little devils, so am unsure how effective it will be for this......
Ceecee

[Windsong]

Ceecee, how are you doing?

I came back to read this thread after doing some browsing (due to my own face symptoms today).
First of all, my thoughts turned to whether or not any docs might have suggested a combination of tegretol and clonazepam for you?
I came to this after realizing that the trazadone i mentioned here before may not have been what worked for me before but that it might have been the clonazepam i was on for a different nerve pain condition i have had for some years.  I realized this only because my own symptoms today, which are on the heels of beginning ear pain on Sunday which i thought was from an ear problem like maybe an infection, may actually be my trigem acting up. Today it's ear pain, cheek pain, tingling, numbness around eye, cheek, nose, and even under my chin along the jaw; an aching feeling through the jaw/cheek and ear. Etc. Tylenol does not help and i am taking an antibio on my own ( doc is away) but i see one tomorrow.
I just now began looking up trigem on google in all sorts of places and was surprised to see the list of symptoms, what sets it off when you have it and so on.
My trigem nerve has been brought up as the culprit for some of my symptoms which i've had since my treatment. Now, even my teeth hurt. And the wind blowing my hair on my face has bothered me lately. Maybe it's my trigem nerve i don't know.
My pc just emitted bells lol so i hope this posts.

So I was wondering how you are doing and whether or not you are better or whether you got some good med too, to help. In any case I thought I'd pass on the one about tegretol and clonazepam unless of course your acupuncture is continuing to work for you as of course, it's better not to have to take any meds at all if you can.
All the best,
Windsong

[Windsong]

http://en.wikipedia.org/wiki/Trigeminal_neuralgia

If you click on the image diagram to the right on this page it will make it bigger and you can see where the trigem nerves go and some blood vessels which may show how  where an An is can affect trigem neuralgia?

W.