I’ve had chronic pain sharp hard stabbing pain behind my right eye just my right for 4 years now it’s left me really depressed and hopeless a lot of people think it’s all in my head wich only makes me more hopeless i used to be a really great happy guy my first 16 years of life now I’m only a shell of who I used to be I’ve seen every specialist known to man I’m at my wits end and am seeing a pain doctor had 2 trigeminal nerve blocks both failed please can some suggest a few surgies procedures or treatments that might be worth trying I’m so done feeling like I live for nothing trust me I love my family and appreciate them so much but I can’t do this anymore I’m so tired of people thinking it’s in my head please help me
Hi Justus, welcome to the forum, you are in the right place. We understand what you are going through, and how difficult it is to get anyone else to understand.
Can you tell us a little more about your history? Do you have any idea what might have brought on the pain originally? What kinds of specialists have you seen? Have you had any MRI or CT scans?
Have you tried any medications? which ones?
I honestly have no idea to be honest the only thing I could think of is from 2011 to 2013 I lived with my alcoholic step grandma and psychopath grandpa and my bi bolar dead step uncle who shot himself I’ve had health issues since then not just mental but real physical health issues so if I had to say what I thought it was it would be that because since I haven’t been the same but now I’m not living in that kind of environment and the pain is still there and 2 years ago I had a mri but unfortunately nothing showed so if anyone can please for the love of god recommend any type of surgery or procedure would be appreciated I’ve also tried gabbapentin carbamazepine amitriptyline nortriptyline baclofen indomethacine etodoloac the list goes on I’ve Seen every specialist neurologist optometrist opthalmologist optoneruologist everything
Wow, you’ve really had a full plate for some one so young! If you haven’t already, you might consider going to the neurology clinic at the UW. I’ve heard they are good, but no experience myself. I wouldn’t jump into any kind of surgery without evidence of an abnormality, or a strong recommendation from a neurologist that you trust completely. Things can always be made worse, though it seems impossible I’m sure.
Some other things I would do to try helping yourself: Keep a journal, with your diet, sleep, activities, emotions, any medications, and the type and level of pain you are having. You will probably be able to pinpoint certain things that make your pain worse or better. It is also valuable to be able to have a record of any changes.
Take as good care of yourself as you can, so your body has every opportunity of healing. Eat a really good diet and avoid caffeine, alcohol, sugar, and highly processed foods, artificial foods. Take a vitamin b-12 supplement (methylcobalamin form) as well as alpha-lipoic acid.
Don’t ever give up looking for answers! Become an expert on your condition. Look into alternative medicine treatments also, turn over every rock you can find.
Thanks for being so supportive and encouraging not a lot of encouraging people around me if I’m telling the truth I hate my life and self I know it’s not my fault but I blame myself for all my health issues feel like it’s not worth it if I’ll never be the same but I do respectfully disagree with you on one thing I think surgery is absolutely the awnser no med works I’m done with medication I gave up on my neurologist after he told me to just make friends with my pain and the only other neurologist in tri cities who I saw once told me it was all psychiatric translation all in my head so I absolutely want to risk it all for surgery do you think mvd would get rid of pain behind my eye even though you disagree what surgery would be the best to discuss with my pain doc I asked everybody this but no one can give me an awnser ? my pain doctor is my last hope !
Justus, please be sure to check all medication and supplements with your doctors. Even OTC preparations can have interactions and effects.
Seenie from ModSupport
I don’t mean to be debbie downer here but for any surgery to be successful especially MVD, there needs to be other symptoms and/or specific evidence of compression of the 5th cranial nerve. Unfortunately your pain is coming from either the second cranial nerve or distribution to the first branch of the trigeminal nerve. You are going to have your best success with pain management (IMO) Who ever suggested UW was correct but as you are just as close to Portland, I would suggest the Casey Eye institute there, they can for sure figure out the true cause. At your age (and sex) its highly unlikely that it is TN, far more likley is paroxysmal hemicrania, or hemicrania continua. The latter is underdiagnosed and often mimics trigeminal neuralgia. The thing is Hemicrania usually responds to indomethacin and you said that failed. BUT it may be worth a revisit.They are finding a dose of 200 milligrams. daily is necessary.
There is little doubt you could find s surgeon willing to do an mvd, but its an awfully big risk with nothing more to go on than “pain”
TJ
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So the second cranial nerve is what I’m thinking tj and the second cranial nerve is the optic nerve correct ? If that’s the case if I had surgery on the optic nerve second cranial nerve wouldn’t it be worth the shot especially over meds that make people into zombies I also don’t think it’s tn because I had to failed trigeminal nerve blocks and I don’t mean to come off as rude but do you absolutely know for sure what ur talking about because if so these are all good things to bring up at my next appt with my pain doc what nerve block would you personally recommend trying next please respond I appreciate your feedback and also nothing triggers my pain it’s just always there
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Have you discussed migraine with anyone? Migraines can cause intense eye pain, can be made worse by stress, and can become “status migraine” which basically means it never stops. Your partial list of meds didn’t have any migraine preventatives or acute meds on it. I also didn’t see any narcotics, have you tried any? I would tell you to stay away from surgery. There are too many other noninvasive options you haven’t mentioned. You’ve been to two neuros, that’s not many at all, I went to at least 10 before I found someone I could work with, interview more doctors! And don’t dismiss going to therapy, stress does amazing things to your body, emotional issues makes physical issues worse.
Great advice from the others. The Casey Eye institute sounds like a good referral. Your pain doctor could probably help you get in there if needed. Please try a few more doctors before giving up–I am sure that at this young age, you will find a way to heal without surgery, and you will not regret that.
Well I’m not sure because 5 years is to many years long can someone please just tell me what nerve block to get so I can have him burn the nerve i don’t have all this time people think I have i work 40 hours a week 17 turns to 21 21 turns to 25 25 turns to 30 please tell me what nerve block to get so I can be normal again if I don’t get it taken care of I will take my own life I don’t need Crisis line just tell me how to cure it what nerve block please??? I just don’t want to wait months and months for someone to tell me nothing’s wrong just because my vision is fine I’m in Kennewick washington what is the next thing nerve block my doc should try please can I get an anwnser
Please help I’m just really desperate to get back to normal what nerve block should I try next
I cannot give you advice about nerve blocks but I can offer a long shot to try - my chronic pain responds to Zomig (zolmitriptan) which is an abortive medication used for migraines. Only gives me 24-36 hour relief but it works fast (usually within 30-45 minutes) and really takes the edge off. You can use it every other day according to my rx. Worth trying if you have not already you will know right away if it helps you. Hang in there it is awful but you will find something.
Hi Justus -
I too have severe pain behind my left eye. It is from the ophthalmic (1st) branch of the trigeminal nerve. As far as I know, there is not a block that will effectively take care of this branch. I recently saw Dr. Burchiel at OHSU in Portland and he thought I might benefit from a repeat MVD with “nerve combing” that he does, but there is also a big risk of numbness and I was not willing to take that chance. I go to pain management now and my pain is controlled (to a bearable level) with Oxycontin 10 mg every 12 hours, Cymbalta 40 mg/day and Namenda 10 mg/day. I have been suffering for 10 years after my TN came back less than a year after my second MVD and then Gamma knife failed. I did not respond to any of the usual meds (gabapentin, lamotrigine, carbamazepine, dilantin, trileptal, baclofen, amitriptyline, Keppra, etc) and have finally found this combination that works! Don’t give up…you just have to keep trying to see what works for you. I would try to get n to see someone at OHSU to find some answers. They have a whole department just for facial pain. And there’s an online questionnaire you can do. https://neurosurgery.ohsu.edu/tgn.php
Best of luck and keep us posted on how you are doing.
Hi Justus, first of all…I am sorry…disbelief and lack of support is the last thing you need. I have GPN but I am also a chronic, almost daily migraine sufferer. I used to think that the eye pain was connected to my condition, but over time I’ve discovered it’s not. It’s a migraine thing for me. It may be a migraine thing for you or perhaps paroxysmal hemicrania, or hemicrania continua. I have botox injections in my face every 3 months (46 injections to be precise) and that’s helped enormously. I also went through about 8 years of no meds working for my neuralgia and migraine and so I understand that you totally despair and you’ve utterly had enough and feel you can’t go on. Try to talk yourself down…calm…sssshhhhh. I was also dismissed by various doctors. Tears seem to make them dismissive, but people often cry in chronic debilitating pain. Don’t run towards the knife without just cause…even with evidence on an MRI my MVD failed. I would suggest high dose anti-inflamms, botox, and I also found that Epilum and Catapres can be helpful with migraine. Have you tried any migraine tryptophans? They don’t work for me. Ice packs on the head help to. Plus talking very kindly to yourself very, very kindly. Lots of people here have gone through the dimissiveness, the absence of diagnosis, the utter despair, but there is hope. You might have to see 20 doctors before you find the right help. But you need help. Don’t be fobbed off. In hope, SFK