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

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

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

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

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

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

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

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

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

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!

a medical report
 

Since I am new to the forum it won't allow me to submit a link yet, but a report on the USC Keck School of Medicine describes exactly what your medical report says it is. Anyone who wants a link to this page, contact me through the forum and I'll get a link to you.

Eye have it all
 

Can't sleep, tongue burns, lightning bolts to the left side, no sleep for three
nights in a row, been through 5 dr,s they all are guessing, the meds don't
work, they aimed and fired with the gamma knife AND MISSED, they think
I'm made of money. Right now I'd give anything for 8 hours of sleep. Any
suggestions for sleep that might work tonight?

TN
 

I had a head operation to remove a benign tumour (meningioma) about 7 /8 years ago after the operation I was still leaking spinal fluid from the operation site and out down through my nose.Unfortunatly at the same time in hospital I contracted herpes simplex in my right eye which then travelled up into the fluid around my brain.Big panic times as I became extremely ill ,but being a good ex marine I survived but was left with an extremely light sensitive eye and bad head aches down my right side of my head and face which of course my quack didn't really accept as being true.
Anyway after nearly 10 years I have been put on gabapentin and for the first time in years I am pain free, even the aches and pains that I experience through having hepatitis c seem to have abated so praise the lord and pass the ammunition
Aye Addie

My Tn started in 77. I have V1, V2 (L). The spontaneous pains are now gone, for 10 years, but the eye movement and usage pain remains with light sensitvty, soreness, etc.
My docs first said, and then some after the Dx and surgical proof, that I needed a shrink (my father did too but that's another story.)
I have a birth defect that resulted in dozens of extra blood vesseks in my brain. Some vessels were wrapped around a part of the brain. That caused the pain. Unfortunately, after the first surgery, a decompression, not an MVD, which worked, including stopping the eye pain, the pain returned 3 months later. (The vessels had apparently grown back.)
I have had many surgeries including an MVD done by Peter Jannetta, My face was paralyzed as a result of that surgery. I am currently with an experimental brain implant.
Please exhaust your medical options before turning to surgery. If you do decide to go that route please read everything you can, and talk to a lot of people about their experiences with the various procedures, before making any decisions.
(The first chapter of my book is online. It gives a good description of the onset and what happened after in trying to get a dx. It won;t let me put the link but if you would like you can find the first chapter excerpted at Amazon or Xlibris, Google A PAINED LIFE, a chronic pain journey and you will come up with a click for the book.)

Many of the people I have talked with over the years do not have what is considered the "typical" symptoms. At one meeting I attended a few of the docs talked about changing the definition so that it was a continuum from trigeminal neuralgia to atypical facial pain to anaesthesia dolorosa (phantom pain - secondary to surgery. I actually have all 3, typical tic, atypical and the AD from other surgical intervention.)
leej

Hey,
I have been diagnosed with atypical trigeminal neuralgia. I am 34 now and have had this condition for 17 years. The majority of my pain is in and around my left eye. There is even visible evidence of this because of the dark circles surrounding the left eye. My left eye is extremely sensitive to wind, light and lack of sleep. The pain is never ending. Sometimes the pain is stabbing. Sometimes the pain is burning. I am currently taking nothing for the pain. I am sick and tired of medications and have decided to "gut it out." I have not taken a medication that actually takes the pain away. I have surgery scheduled with Dr. JHO within the next few months. Wish me luck. They actually did find a compressed blood vessel that is probably causing the pain. I will keep you posted to tell you if the surgery is sucessful or not.

Thank you for posting. I'm all for failing medical management before submitting to surgery but there seems to be a lot of people jumping at it early on. My pain began as atypical, and is now a mix of classic and atypical. I found your observation of the medical community thinking of changing the continum very interesting. Anyway, thanks for sharing. Ellena

I wish you the best and I do hope that you'll continue to post. What surgery are you going for?

Ellena

TRigeminal Nerver Pain related to the eyes
 

Hi:

I noticed that there area some very old post from people suffering from this disorder. Are you still active on this site. I would love to hear from you or any others who have this disorder,

Thanks

Shaughnna

HI guys,

Hate to be joinging the party here but I have V1 neuralgia as the result of an ongoing HSV1 viral infection. Yep HSV1 the herpes simplex cold ssore virus that apparently can live in your trigeminal nerve. And to think I have never had a cold sore in my life. Anyway some extensive dental work I was having caused the virus to come out. I have terrible burning pain along the left v1 nerve.

Shelley, we always hate to welcome people to this club, but there are a lot of caring people here willing to listen and share what they can, when they can. At least you are lucky enough to know what caused your TN. In my case, I don't have any idea and neither do the doctors. Are you treating with meds and are you seeing a neurologist? EE

((((((Shelley))))))
and you too((((( EE ))))))
I feel like poo poo at the moment and dont have much to say but wanted ya all to know I care and am reading the forums.
Are the meds helping with the pain Shelley??
EE how are things with you??
PEACE
BMW

Thanks EE :hug: I really apprecaite your support. I am sorry that the docs dont know what caused your TN.

I am glad that I do because the antiviral meds really help even with the pain surprisingly. EE have your docs never thought maybe a virus could be causing it? Its an easy test for them to do a blood test for the IGG and IGM antibodies.

SO right now I am being treated with valtrex for the virus.

I am also using neurontin for the pain and today the pain doc asked me to try nortriptyline because I guess its a neuropathic pain of the trigeminal nerve so he considers it secondary TN.

He also aske dme to think about some nerve blocks but I am to give the meds a try first.

The hard part is that it not only affects the trigeminal nerve but also is affecting the occiptial nerves. He actually did a really good job of explaining why so it helps my mind to know what is happening when the pain is intense.

Anyway its nice to meet you and thanks again for the warm welcome. :hug:

Oooooo noooo BMW I am so sorry you are feeling poo poo :hug::hug::hug: BUt thanks so much for your post and I am trying to mange through this pain as best I can until I get up to some dosage that diminishes the pain. I suppose I will get there eventually. Anyway I so hope you feel better soon :hug:

Shelley,

I'll have to ask about those particular viruses as I don't know. I also suffer with ON but its due to my neck. These conditions are the pitts:eek:.

Let us know how the meds work for you as you go on. The direct nerve blocks for the ON worked for me for a little while, but they are temporary. The initial anesthetic shot is heaven while it lasts. I got some prolonged relief after a second shot with steroids, but it also wore off so right now I'm in limbo there. I've never had any blocks for TN, but I don't know if you're referring to that too, or what. Maybe I'm just over tired and things aren't real clear right now.

Take care :hug: EE

EE I asked the pain doc today why if he virus has primarily damaged the trigeminal nerve do I have occiptial pain and even swelling and occiptial muscle spasms. He explained to me that the trigeminal nerve has nerve inflammation and if swollen and damaged and that when it goes into the brainstem through the skull it loops around and passes next to C1, C2 and C3 so he thinks the inflammed TN nerve is causing secondary pain and inflammation to my occiptial nervs. He even drew a picture and I was like wow ok I get it.

Another thing that has really helped me in terms of the TN pain and this constant burning is a precription triple numbing cream that i put on my forehead and other various places. When I use it I feel relief around the TV nerve and then it progresses to the back of the head and ON nerves. It surprised me but I am thankful for the relief that I can find. But then my TN is only secondary and neuropathic in nature and atypical to some degree.

:hug::hug:

Ron, I am one of the rare V1 TN'rs. 90% of my pain has been in my forehead. My pain is typical TN. Usually if feels like I am being stabbed with an electrified ice pick. I have also felt plenty variations of the pain in my 14 year struggle. I started getting the pain in my eye a month before my mvd. I have had a mvd and gk, but still suffer. I have been hurting alot more the last couple years in my eye nose and eye socket, but the forehead is still most prevelant. I have had some, but very few pains in the other two branches. Any questions let me know.
Will

V1 with Eye pain
 

I have been dealing with V1 located behind my right eye. I had been masking the pain and symptoms with Lyrica but I have just found this* with good sucess and it is all herbal...

*neureton


2 months ago I would have laughted at anyone telling me herbals stuff works, but I have been open minded and have been taking 2 herbal remedies for other conditions and it is working.
I am going to try this and will let you all know. :winky:

severe eye pain
 

Since June of this year I have had severe eye pain - no redness, no vision problems, no other signs of an allergy. I've been to the opthamologist several times and had an MRI of my brain and face with negative results. I have had this for 2 months now, and sometimes it gets better at night. I used to get neuralgia in my face probably about 10 years ago, and it would usually last days. This eye pain has lasted 2 months, and was so painful at times I missed work and couldn't drive it hurt so much to have my eyes open. And just 2 days ago the pain stopped finally. I had put blackout shades on my windows, and also started taking Lamictal (already prescribed for me for my Bipolar, but which I rarely took because of the weight gain issues.) I don't know if that's coincidental or was actually helpful. I also went to an acupuncturist, but of course by the time the appt came, the pain had stopped. My brother told me about this kind of neuralgia, and thinks that's what I have. I was just wondering if anyone else had something like this that affected both eyes and lasted as long.
Thanks, Claudia

Hi there Jen,

This sounds so much like what I'm going through. I've been so discouraged and have not responded well to treatments. I just wanted to say hi. I hope something will work out well for you.

I think I found someone with my problem!!
 

Wow!! My pain started March 05 as well. Wasn't March 1st was it?? I have the same symptoms you are describing in both my eyes. When it's really bad it feels like I have a sizzling feeling along my lower lash line. Sometimes it feels like my eye is going to pop. It varies day to day. I had an MRI but it showed nothing. I would say if you are shown to have an artery touching the trigeminal nerve you may have more hope! Maybe surgery is a possiblility for you (though a scary one). I'm on cymbalta, tramadol, gabapentin, and lorazepam for my pain. I also have to lay down every afternoon. I'd like to um 'friend' you if that's a possiblility here (I'm new too). Your symptoms and what you've been through is all too familiar to me.

can I have that link please?

mylastnerve-contact please
 

Hi, I'd like to contact you to see how your pain progressed and see if you were ever diagnosed? If you get this can you try to contact me? I'm not sure how these forums work as I am new...but my symptoms are like yours.

It appears I'm a bit late finding this discussion, so hopefully people are still reading this?

Basically, I'm trying to self-diagnose myself as my doctors aren't really getting anywhere. After a lot of reading around, I think 'Atypical TN' is probably the cause of my symptoms. I note most of you seem to have more typical/classical TN, so I'm hoping someone will recognise my symptoms?

It's a long story, so I'll try and make it as brief as possible...

Basically, I started getting sever pain in both eyes in about October 2010. The pain was constant. It quickly worsened; by November 2010 I was house-bound as I couldn't open my eyes for the level of pain, and by Dec not only had pain in my cheek bones, but I'd also lost complete sensation in other parts of my face. Around this time I was put onto Gabapentin/Neurontin which had little effect on my eyes, but did help the facial problems. However, I was still left with the main problems:

Sever constant pain in my eyes and a firework display in my head. I my eyesight was unaffected, but it was just too painful to open my eyes.

I had to keep my eyes closed 24/7 and had to wear a sleeping patch all the time to stop any light getting in. I had this constant pain even with the patch on, but even to let 2 seconds worth of light in would take the pain up even another level (and 2 seconds of light could make this worse for up to 48hrs after).

The Neurontin dose was gradually increased up to 3600mg a day. After several months at this level the firework display in my head disappeared and I could take the eye mask off for about 10mins a day, but that was it. It simply appeared that my eyes could withstand any input, like it was just overloading my brain.

Anyway, I saw a further specialist who also prescribed Amitriptyline. After a while this started to actually have some positive effects. The sharp pain I experienced from looking at closer objects gradually subsided. It's also partly masked other symptoms. I have now been taking all the above for nearly 4 years and I seem to have plateuxed.

I can now cope with natural light and light from incandesant light bulbs (non-flickering). I do get a sharp pain from bright light, but can counter this with dark glasses. But I do still have some level of pain all the time.

However, I still have a violent reaction to fluorescent light and TV and computer screens (light with a high flicker rate). It is more of a burning sensation and an automatic reaction to shut my eyes (like neat shampoo in your eyes - you try to open them but you can't) - just from looking in the direction of a screen (my friend is typing this as I speak it). I cannot enter shops or offices because of this pain from fluorescent light, and struggle to look at even a small screen for more than a couple of minutes (swopping from eye to eye).

I think although my trigger may be slightly different and you cut through most of my story there definitely seems to be some form of neurological problem (pressure where the shouldn't be, or soemthing like that). And it's not typical TN, but ATN does seem to fit the bill more than any other condition I have heard about. I have had full examination of my eyes and the problem is not there. The MRI of my brain did not show anything particularly unusual, but then I see that is not always the case for TN. I also suffer frequent and heavy migraine attacks, but these are a very different pain.

Any questions, comments or help will be well received.

Many thanks,
Chris

I've always had it were I've had dental work toward the back of my mouth/jaw on the right side, but also in my right ear. But recently, I've had some strange bad pains in my nose and once (thank goodness) in my eye area.

Like I said...recently, I have some sharp shooting pains in my right nostril. An ENT said it was related to TN or ATN.

I also had a headache/migraine from "you know where" one night, mostly on the right side. I almost went to the ER. The very weird thing is that my right eye, drooped a tiny bit after that. I think that was related to TN or ATN. Thank goodness, it hasn't happened again. Scared me to death.

I use a compound cream with Gabapentin and other things in it, on my right side 4 to 5 times a day. I now put a little bit of the cream on top of my right nostril 1 or 2 times a day. Voila! Better.

Before getting this cream, I would use Capsaicin Cream. I burned myself many times. Also, found tiny heating pads that I believe skiers use...they heat up chemically and tie them to my face.

I take a med in the same family as Amitriptyline by mouth daily and also use a compounded cream. I've had good luck with this combo. Other meds I tried, ripped my stomach apart and gave me horrible side effects.

A great website to also try is www.livingwithtn.org.