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Chronic Eye Pain and Nortriptyline
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Chronic Eye Pain and Nortriptyline

I've been suffering now with severe eye pain in my right eye for around 7 months.
Without going into the diagnosis (which is still unknown) and all the testing and so forth, I've been given Nortriptyline to take, starting off with 10mg per day.  I've been told I can increase this till it works with a max dose of 100mg per day.

After 7 months, and now being sent to a neurologist (already had every test known to man at the eye infirmary, and an MRI) to discuss MRI and diagnosis, I am desperate for anyone's feedback as to what is the best way to treat the pain.

I am a sufferer of iritis already and can honestly say the pain is worse than an iritis flare/attack.

Gapabentin has also not worked!  I am now right at the begnining of taking the Nortriptyline and if anyone else on here as any tips, please send them my way.  Ice packs dont work and are also inconvenient - I want to return to normal life and work, which I am unable to do at the moment.

Thanks in advance
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Hello Blackwida,

I am glad that you have joined us at the PM Forum. However I am very sorry to hear about your painful eye.

My husband has had iritis four times and nearly lost his vision. His last episode and thus far the worst was preceeded by months of severe eye pain and after resolution it lingered for several more months. He saw numerous eye specialists and finally ended up at our large university hospital with the "best" ophthalmology surgeon in the state. His labs were elevated and it was a real mystery. There was lots of guessing. But I'm sorry to tell you that a reason was never found. But happy to tell you that after almost a year all of his symptoms disappeared and have not returned. That was eight years ago. We're still hoping we have seen the last of it.  

I know that is not answer for you. I just hope that your pain will disappear as quickly. They were leaning towards some type of a rare inflammatory process that had struck the eye structure and nerves or a rare virus. They reassured him that in time his condition would become clear as they thought he would develop more symptoms that would aid in their diagnosis. Obviously that did not happen. His sight is not as good as it was prior to the eye pain but it has not deteriorated.

I recommend you see the "best" in your state. Keep searching. It may take several physicians until you obtain any answers. I will post more later.
Take care and good luck, Tuck  
Hi Tuckamore and thanks for your reply

THis actually sounds all too familiar.

I have seen the best opthalmogists at my eye infirmary, in fact 3 surgeons, the latter of which was the oldest just in case he had came across anything like my situation in his longer years of service - sadly no.

What I would like to know is, was your husband given anything for the pain?
When my pain is at its worst, I am unable to even leave the house.

My GP also told me that they may never get to the bottom of this and my best hope is to get the pain under control - hence my main goal is to concentrate on the pain management rather than what is wrong.

The eye people have referred me to a neurologist (appointment is on 21st April), as the MRI I had done showed some small lesions in my brain.  they told me that this is something that normally appears in much older patients, not a 40 year old such as myself.

WIth also being made redunandant at the beginning of this episode I would rather get the pain under control, so I can at least return to work.

The daily grumbles that may or may  not turn into a really bad phase of this pain, is what scares me the most - as I am unable to plan anything.

Once again thank you so much for your reply.

I have been given Gabapentin, and now nortriptyline as the next step in pain control.  I also take Arcoxia 120mg as an antiinflammatory which helps somewhat.

But your reply has given me some hope - let's hope my symptoms go away too!

Best wishes

I have browsed this site quite frequently for a long time now, I was in a similar situation to you 9-10 years ago. There are some major differences, I have had many operations (retinal detachment x 3, corneal graft and cyclo-diode laser for acute angle closure glaucoma), since the operations I developed chronic pain. I went through a similar drugs to you, first Dihydrocodeine, then various others, amitriptyline, gabapentin aswell as others I can't remember. Since 2001 i've been taking MST continus (morphine) in ever increasing doses. Unfortunately the pain is severe enough to force me to leave university half way through.

The most important thing I have learnt is to find the most understanding GP even if you have to change doctors, it does make a big difference.

I hope things improve
Hi Andy
THank you so much for taking the time to read and reply!

You're right, I haven't had any major ops, they did say that I've developed Pars Planitis in my left eye due to the iritis, but I think it's because of this new episode of odd pain.  Also along came a cyst in my right eye which they beleive is nothing to worry about, but it has all happened during this odd phase of chronic pain.

I am now on 30mg of Nortriptyline and I think it's having an effect... should know by the time my neurologist appointment takes place.

When I was having my MRI (I had to be admitted for 3 days so that they could push forward the scan, otherwise it was a 2 months wait!) - I had a really bad attack right after also having a B Scan on my eyes.  Because I was in hospital I asked them for morphine which worked, but it made me feel very sick, even with a antisickness tablet.

So you must have gone through a hell of lot!  I think you're right, it's a case of sucking it and seeing if it works, with all the different drugs.  THe problem I have is that the pain clinic has a waiting list of 5 months, so if the nortriptyline doesn't work my next appointment with them is in September.  My GP though is very understanding although, he is very expressionless! ( aren't they all!), but I can go to him if I have any problems.

THe eye infirmary who I see regularly for my iritis, I have a follow up appointment with them at the beginning of May too.  It's a bit awkward at times, because sometimes the pain can resemble an iritis attack and I've been into casualty so many times thinking it was that, and it wasn't.  But they've told me that because of the way things currently are, I have no choice but to go and reassure myself just in case it is a flare up of iritis.
It's my second home now!

My pain is also worse around my period, whether this is significant to them, I don't know but if I can get through the next one with minimal pain, then I will stick with the nortriptyline.

Anyway, thank you once again for your response and as you are also an eye pain sufferer such as myself feel free to keep in touch.

All the best

I'm glad the Nortriptyline has helped somewhat, unfortunately you have to be patient, those type of antidepressents take anything up to 4 weeks to work to there full effect. I also have been to a pain management clinic was told the average wait was two years when I was reffered in 1999. Luckily my consultant knew the anesthetist who ran the clinic so was able to pull some strings.

I also had nausea with morphine although that was only for the first couple of weeks of use. Had to wait 3 years with uncontrelled severe pain before they'd even think about prescribing it, although not even being twenty didn't help, even now mention i'm taking morphine to a doctor scares them half to death. I have also been to casualty a number of times as the pain mirrors severe acute glaucoma but when the pressure is tested sometimes its normal, other times its way too high. Have had iritis several times before the pain really got severe so I know only too well what it is like. The last time the pain was to severe to tolerate I went to A&E and was addmitted for Intravenous morphine and that was new years eve.

Unfortunately removing my eye wont isn't an option and likely would make it worse. I'm extremely luckly to live in the UK and in my experience the NHS is second to none, if i was in the USA I dread to think how things would be as I'm unable to work and medical treatment in the USA is extremely expensive if y our not insured, especially sustained release strong painkillers.

If you have any questions don't hesitate to ask,
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