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Anybody with V1 Trigeminal Neuralgia/Eye Pain?

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Unread 06-04-2007, 12:58 AM   #1
Core9
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Default Anybody with V1 Trigeminal Neuralgia/Eye Pain?

Hello, my pain started suddenly March 05, since then my left eye is very sensitive to light(especially TV and computer), have deep dull pain, feels full and large, burns on and off, sometimes a cutting sensation... after a million doctors and tests, they found an artery that is touching my left trigeminal nerve.

Now I don't have the typical pain that is usually discussed, but most research I have done they say that it is usually v2 or v3, that v1 is rare, so I am not sure if the pain would follow the same patterns or what?

Since I have not been able to find out much info on v1 neuralgia, I was hoping to find out some info on here from someone who unfortunately has the same problem.

I have had this for almost 2 1/2 years and I am ready for surgery if thats what it will take, but since I dont' have the complete "typical" symptoms, I wonder if it's something else.

PS I have injured this eye 3 times, but most of the docs say it has nothing to do with it, but i don't believe it.

Thank you
Ron
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Unread 06-04-2007, 08:28 AM   #2
EE03
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Ron,

My TN is bilateral and affects all three branches. My earliest attack involved my eye. I suffered with stabbing pain to the eye for approx. 3 weeks. After the first week, I saw an opthamologist who couldn't find anything wrong with the eye. He gave me allergy eye drops an attributed the pain to that. The drops didn't help and the stabbing pains continued, constantly, and didn't respond to any pain meds. Then one day, it was gone. The intensity of this pain was low considering the lightening bolts associated with the condition, but it was constant and felt as though I was being stuck with needles, repeatedly. Some active neurosurgeons believe that bouts like this are the early, pre-TN attacks, before it gets to the lightening bolt stage. In my case, it took a little less than five years to progress to the full blown lightening bolt attacks, but sadly, it did. Prior to that, I had repeated episodes of the pre-TN stuff, with each successive attack lasting longer than the previous one. Since this is a rare condition, most of the literature on the net is not updated. If you haven't already done so, you may want to check out "Striking Back" a book which is available through TNA and also check out their website. There is a lot of information there which may be helpful to you.
Take care, EE
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Unread 06-04-2007, 10:08 AM   #3
oliverjenniferm@aol.com
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I also suffer from pain in the left eye and headaches in the head and back of head radiating to left side of face upper teeth and cheek, forehead. I have been rediagnosed with trigeminal neuritis and occipital neuralgia. Try ice on the back of your neck and see if it helps. The pain docotr pushed on the back of my head which sent me to the roof, but it confirmed the occipital diagnosis. I am trying to have stimulators implanted, but insurance is saying it is experimental. I am also having nerve blocks in my neck and head to see if they help. I was also told to have the MVD surgery by some doctors, others not so now am trying other methods. Do not give up search and be sure before you have the surgery. Take care ,Jen
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Unread 06-05-2007, 07:41 PM   #4
Core9
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Just a quick update, my doctor tells me today that he thinks that "it's in my head" and that I probably need some psycho therepy......IT'S RIGHT ON THE MRI REPORT THAT the superior cerebellar artery is touching the cisternal portion of the left trigeminal nerve......WTF???

I am getting so sick of these doctors, for years they came up with all sorts of diagnosis', all to no avail, now i finally have some visual evidence and now I'm told that i am creating it.....

Just had to vent, does anyone know for a fact that you can have artery touching nerves and NOT have pain from it?? I am very curious about this. Please give me some feedback.

Ron
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Unread 06-05-2007, 09:26 PM   #5
EE03
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Ron, TN is all in your head, but not the way your writing of his comment infers. If it were me, I'd take the films and report to a new neuro doc and see what they say. MRI's don't always show arteries or vessels wrapped around the nerve but if yours does, than the literature out there says that explains it.

FIND a NEW doc QUICK!!!

ee
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Unread 06-05-2007, 09:49 PM   #6
janet
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Default trigeminal pain IS in your head

Hey ron - I totally agree with ee. Four years and $50,000 in debt, plus the loss of a 35 year career - that's what my "all in your head" pain has cost me. PLEASE, get on a search engine and type in "trigeminal nerves" - they all start in the MIDDLE of your brain and branch out like limbs of a tree. I'd suggest printing a good "visual" and always have it when you talk to an MD. Ask them to point to the origin of your pain.

You are not crazy!!! Janet
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Unread 06-10-2007, 12:04 AM   #7
mark
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My mother had TN for years, they did a MVD in 1973, seemed to work good. My wife got it just over 2 years ago, had GAMMA KNIFE radiation. Worked great, now, 2 years to the month, TN is back... Exhaust the basic stufffirst... we are using ZOTRIX (walgreen's) otc. It is a topical... my wife has noticed a distinct difference around eye, nose, temple, cheek...etc.. It is made with capscian (hot peppers) check it out. We are now going to add Spigelia(homepathic) to Zotrix (affects the nerve endings) and from the inside with the Spigelia anthelma... A world renoun Neurological Institute want to do the MVD on my wife... funny, no procudure has guarantee, oh, if the Zotrix doesn't help, save your receipt.... you can take it back to Walgreens, the MVD process is only $125,000.00, and NO RECEIPT, or guarantee....... there are other medical ways to go, and Janet is right on, I wish it weren't so, but,,. Doctor's (sorry Dr.s) are in business to be in business, I am just pi**ed that no one mentioned the most basic of trial and errors that have no side effects, and cost about $11.00 here in Phoenix.,,,,, hang tuff, there is NO CURE..,,but, if you can control the pain without drastice stuff, or heavy drugs... hey, the worst thing that happens is nothing happens,,,,,,, Mark
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Unread 06-10-2007, 01:50 PM   #8
EE03
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Mark, Don't be PO'd that no one has mentioned the OTC stuff. All of us react differently and have different resources. I would be interested to know how your wife does once you add the other OTC products you've mentioned. I know I tried capsacin before, on my foot, and every time it got wet, it reactivated the pepper. Does she experience that? Please keep us posted.
EE
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Unread 06-11-2007, 12:30 PM   #9
mark
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OH YEAH, since she uses it on her face, she has gotten in her eye. It gets very hot when wet. That is what we try to do on occassion as it heats up the nerve endings. She describes it as "burning" the nerve endings, even though it does not really burn them, just super heats em up. Waiting for the Spigelia, we do not know if this is workable as the condition does not have a cure... will let you know.thanks..

Mark
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Unread 11-20-2007, 12:11 AM   #10
Mylastnerve
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Core9,
I am a brand new member, I get it in my right eye, cheekbone, nose, and top teeth. I am still in the process of getting diagnosed. I just wanted you to know that you are not alone with the V1 nerve thing, and maybe we can keep each other updated as things progress.
Best of luck, and a minimum of pain!
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