Olphtalmic TN

Hi LifeAhead. It is strange but I mentioned only yesterday to my practice nurse that I had never heard of anyone else with TN that affects the eye the same as mine does and today I read your post! Well you have my sympathy - mine started almost 4 years ago with tingling in my scalp followed by like you say excruciating pain - like someone was punching me in the back of my eye - I've never known anything like it. My GP at the time thought it was cluster headaches and prescribed Ibuprofen but to no effect. later that day I was admitted to the local hospital where I was diagnosed with TN, prescribed 200my Carbamazapen which helped a little. 3 days later I was discharged but the MEGA electric shocks were triggered every time I moved (I spent a whole day standing because it was too painful to try and sit)

GP told me to take another 200mg and hey presto - relief! Crossed fingers, I, like you had an outburst of cold sores (herpes) all over my lower face so maybe that is anotherr symptom.

I have now weaned myself to two per day but don't know whether to try one per day - and pray that it doesn't all start again. So the only advice I can give is to bear with it and ask for GP to try different meds until you find one that suits you.

Please feel free to reply to discuss (no-one but a fellow sufferer knows what this awful affliction is like)

Hi Lifeahead

As you have noticed there are many things IN GENERAL that people with these issues have but when you move to specifics the similarities start to disappear.

My circumstances boiled down to excruciating pain centered on the left eye and left side of my face. The eyebrow itches permanently and the face sensations (left side) also cause havoc.

Until recent surgery (for another issue) I could not even wash my hair on the left side of my head. ANY pressure to that side of my face would cause very severe pain.

I ended up on Gabapentin and OXcarbamazipine and that gave me some control of the pain. I ended up like a zombie but I learnt to be able to handle that.

AsYou are finding the knowledge of these type of complaints is limited mainly due to the infrequency they are presented to the average GP surgery.

RULE 1     NEVER GIVE UP

RULE 2     RESEARCH, RESEARCH, RESEARCH and drive the medicos to help

RULE 3     REFER to RULE 1

I hope things get better for you very soon. Took me three years and a lot of investigation by the medical people to get where I am. I have no doubt it will come back and bite me at some stage but till then I just have to enjoy the break I am having right now.

Currently I use OROMORPH (oral morphine) and the occassional paracetemol for which I am very grateful. Jsut remember there is a solution out there, finding it is the hard task.

Baudy!

 

Hi,

My story is long and involved, so in short : Migraines since age 13 - 14, then about 12 years ago migraines 'changed' - focussed on left eye rather than left side of head, like a super hot knife being stabbed into my eye, I thought cluster headaches because I also had stuffy or runny nose, teary eye and the pain would wake me up, also on and off for several days. Also in past 10 years - ear infection, fall down stairs, shoulder, neck and head injury which I believe contributed to issues with inflammatory/autoimmune arthritis problem I now have. Lady problems too! No success with GP. Change of doctor 3 or so years ago and shoulder which had become frozen was soon fixed as were the lady problems.

In the meantime the 'cluster' headaches got much worse and the pain was spreading to my nose, cheek and teeth. I was also getting shocks and stabs over my head and face. I also get a tingly/numbness/spider crawling sensation over my left cheek. Absolutely nothing got rid of the pain, not even my husband's MST or Tramadol. In desperation back to the GP, explanation of the pain and diagnosis of Trigeminal Neuralgia. I am now taking Carbamazepine 800mg a day and 50mg Amitriptyline at night with additional 20mg in the day during flare ups. I have noticed that I get fewer stabs and shocks on a daily basis and when the pain flares up in my left eye it is generally less severe (still excruciating!) and tends to last for many hours rather than many days. I also take a combination of Co-codamol, Ibuprofen and when desperate MST too (this last few days have been crappy). 

All manner of causes have been suggested for the TN, including the head injury which did affect the left side of my face too. I have never had shingles but that too was suggested because of one of the many and varied rashes I get due to the autoimmune thing which may or may not be Lupus!?!

What's interesting is that TN manifesting in the eye is rarer than in the other branches of the nerve. And is considered much more painful and debilitating. When it flares up I am incapacitated, no ifs or buts, I simply cannot do a thing. It is a mountainous chore to even get the tablets to reduce the pain.

One of my colleagues is an Ophthalmic nurse and she informed me that a great number of patients attending the clinic with eye pain are eventually diagnosed with TN.

One thing I found recently which seems to alleviate the pain to a degree is hot water in a shower, but that's not practical, or cost effective these days!! So I have taken to placing as hot a flannel or similar over my eye as I can bear for as long as possible. At this moment the pain is starting up again so will need to stop typing and 'do some drugs' and get a hot compress (I couldn't think of the word earlier, tut) for my eye.

So, best of luck in finding a solution which works for you.

I am so sorry to hear of your pain. I had severe intermittent pain and was put on tegretol with bad negative effects (dopey, tired, continuing pain, mouth sores). I switched to Oxcarbamazipine (trileptal) which still makes me tired but I am less dopey and in less pain. I use local pain medi (over the counter for canker sores) sometimes at night if I have lots of pain. I agree that you should never give up as I have found some things to improve the situation.

Ok well, this seems serious. They "say" (Wikipedia and elsewhere) that 90% people get rid of post-herpetic problems within a year, I hope there are right for my case.

But anyways,

jennymb you take only 2 pills of 200mg Carbamaxapen per day? Lucky you! I take 3 and it doesn't work, or fully work, I don't know.

Baudwalker: Ok, but I cannot be 3 years running to the sink in full excruaciating pain in the middle of the night. I need faster relief, I consider my case an urgency, I can handle it a couple months maybe

but I need some relief.

susan33651:

Well cold water is my solution right now. I can't get out the house, somebody do chores for me. I use the cold water on the back of the neck (spine) and it diverts the pain somehow. I am sorry for your condition which seems very serious and hope you find a better solution soon.

Which brings me to this link. Has anyone thought or looked into other solutions than meds?

http://www.mayfieldclinic.com/PE-TRIN.htm

Also in this list of It Might Not Be TN, they saus throbbing pain in the eye could be post-herpetic and not TN but it really feels like TN to me. My GP treated it as TN. Very vonfusing.. What is "throbbing?" anyways? Mine feels like burning:

[b]http://www.tna.org.uk/pages/it_might_not_be_tn_[b].html

 

LifeAHead,

I will suggest you schedule an appointment with both neurologist and neuro opthamologist,

I myself have to go see neuro opthamologist , After second visit with optomologust.

Bless you and keep you and give you peace he probably

My problems double vision is from MVD surgery for TN.All eye problems like you have are to be corrected by a neuro optomologist.

God bless

Us and keep us and give us peace

LifeAhead, 

I too have VERY severe TN from a severe head trauma. After an MVD my eye was left with no feeling you can touch it & I wouldn't feel it. But man I can feel pain! To help my pain I stay in desert in winter so the barometric pressure doesn't make me live in total AGONY. I almost didn't make it thru my last winter!  So every fall I leave my husband & stay from Sept til June to avoid season changes. The AC though dries out my eye I think it's all I can think,? I have restasis prescription eye drops for dry eye. I wear a silk eye patch still my eye sizzles, burns SO bad with no respit. I wake & it's not bad but there as day goes on it builds until it stings to a terrible point & my skin all from eye brow to side of nose cheek on left side my TN side sting with my eye & burn. I have a brain stimulator & take 300 mg time release morphine sulphate down from 400. Still to go down more to 70 mg I think is goal 15 yrs of this that little never worked not even at start, before it was THIS BAD. I'm afraid. My government is forcing this opioid reduction for Chronic Pain. Sadly. I'm afraid I won't survive Very! I have tried all kinds of medications out there I take gabapentin which helps some. Not a lot, the brain stim helps I did all the surgeries to try to get off meds & opioids but after 15 yrs it's so severe, & my stim at 5.0 MHz caused seizures only 2% get seizures if not for that I think I might be ok.  Cold compresses don't help. Lidocaine patches & Ketoralac injections help me , in my thigh. It helps the burning a lot!!!! Not the oral Ketoralac that doesn't work well but the inter muscular that's the ticket & shots are easy to do once you get use to it. Just like diabetics must do. So maybe your doctor will let you try the injections I'm allowed 10 a month. My old Dr allowed 12 a month. It helps the severe skin burning a lot especially with a topical lidocaine patch I cut to fit my face like a half mask almost & I use clear surgical tape to help hold it on bcz it comes off your nose easy. I hope any reading this will pray for me. My pain is so severe growing all the time & with my opioids being brought down by new government standards here where I'm staying for now. It's very hard & I have 1.5 yrs till my daughter s wedding. I do so want to be there  I want to be ok please pray for me. I am afraid. My pain level scares me as you said. It's inhumane levels of pain. At times unbearable 

I hope I gave you some good suggestions. I recommend the Moro Cortex Brain Stimulator HIGHLY!! It worked 5 months before my seizures ( which as I said are very rare) over night in the worst winter I went to only 100 morphine from 400. From 150 break through 10 mg dilaudid to ZERO!! And I never felt better through all 5 months of winter normally I'm miserable admitted & in & out of the ER countless times winter was hell. The stimulator really would have TOTALLY saved me. If not for my seizures from anxiety & a predisposition to them. I really advise you look into it my MVD & gramma radiation did nothing for me. The stimulator though was like a miracle still even much lower I know with out it I would not be here it helps a great deal when I turn it off which is never now but when I did it was not a life I could keep living the pain was so much worse than even what I have now. So still it's helping & saving my life. Please anyone in severe TN pain look into that before anything drastic. You will be amazed at how it can save your life & turn it around. My prayers to you all. 

All my best wishes for healthy living!! 

Rene' 

I am replying to this thread because I realized I left it abandoned.

My trigeminal nevralgia disappeared after a couple months where life seemed like hell on earth.

I still have pain since that time and came here to discuss it elsewhere, it is post-herpetic pain from after a case of shingles.

But I do not know what stopped the trigeminal nevralgia (which is: huge crisis that last a couple minutes which feel like the right side of the head is burning, so painful that you roll down on the floor and almost faint). The meds I was taking (Gabapentin and Carbamazepine) never seemed to do much. But I was taking cortisone in the eye to battle an uveitis caused by the shingles virus and the TN disappeared gradually when I stopped that med. 2 other things: I went to see an "energetic" doctor who was convinced that I would be cured after his "energitic massages".  It sounds absurd but I'm just saying, when you are really afraid, you are ready to try anything.

Finally, all the time I had the trigeminal nevralgia, I was putting my head under a clod shower, which wasn't soothing the pain but it wasn't the point: when you put cold water on the top of your head and on your spine at the back of your neck, it creates a diversion, a lot of things happen and because of that it takes some attention away from the excruating pain of trigeminal nevraligia. After that I read that some people use electric machine on their head to stimulate bran activity to try and repair trigeminal nevralgia, so I wonder if what I did was the same but, using a natural process. Cold droplets on the head instead of electric pulses.

This said my trigeminal nevralgia was a complication from shingles (perhaps the worst complication you can get from shingles when it happens in the face). So it might be one type

of trigeminal nevralgia that can recover more easily, compared to one caused by another problem in the nerve or disease.

As this is one of the worst symptom I can imagine, I can tell you if you read this and suffer from this, your first option is to try anticonvulsants meds, than try these electric brain devices or like me, cold showers under a sink, than I have read a lot and heard about different methods used

to cure the problem: injections (like Botox) in key sections of the nerves, cyberknife or radiation therapy, or surgery (which can cause partial paralysis but I think with this symptom, I would have gone for this. But doctors will likely try all other methods before opting for surgery).

With all this said, I have also read from people who said they tried everything and nothing helped until they tried... cannabis. We're talking medical cannabis, not the kind you smoke and get you a buzz effect. There is a Buzzfeed video on Youtube about this, a sufferer of Trigeminal Nevralgia that got a lot of relief with medical cannabis.

So yeah I write this a year later: first I was in shock for months for what I've been through, second there were other problems that never cured since then so I felt like "until I'm totally cured, I've never survived this thing". But the truth is the post-herpetic pain I have today is a joke compared to Trigeminal Nevralgia. I didn't know people could suffer so much, and I'm saying, if you have this, read read read, learn about the best neurology hospitals and specialists. Do not give up there are options out there. I have heard of a man in UK who got rid of a 20 year-long trigeminal nevralgia (his was in the jaw) because of a new method of injection, and even if he might require a new injection every year or so, it's stil a cure. So, don't give up. Cheers!