any treatments for referred pain?

[poppy]

The last year or so I have been getting attacks of what I am sure is referred eye pain that started deep within the eye balls and has gradually spread all over my head. At first these attacks were brief and/or infrequent and didn't interfere with my life much but lately they have been getting rapidly worse. They are not affected now by the severity of surface eye pain, computer use/eye strain or anything else, seemingly. Yesterday I had a bad attack of several hours feeling like a drill had been used in the sides of my head right through to my eyeball, with my cheekbones and upper jaw aching and my eyeball throbbing. I was on a long weekend off, so wasn't even in air con or using a computer as much as usual. So there is nothing I can do to the surface of my eyes that will help this problem. I am quite afraid of what the future holds, with not just the ever worsening dry eye pain etc but this migraine like kind of pain. Experience tells me that my eyes will only continue to worsen and this type of pain will only continue to worsen. I am wondering if there is anything I can do for this pain, I am thinking more of something like a migraine preventitive (even though this isn't a migraine, thought it might help) or something for neurological pain? The problem isn't suited to painkillers, as severe attacks come on suddenly and often do not last long enough for a painkiller to kick in, besides which, at times the severity of the pain would not be touched by over the counter painkillers, and I don't want to take anything addictive. I am already taking endep for other reasons, which is supposed to be of help with migraines etc, but I don't think it is doing anything. Thanks

[patrick]

Hi poppy,

I'm experiencing symptoms somewhat similar to yours.
With me it began several years ago with occasionnally some surface pain like you describe,but unfortunately the pain has increased substantially over time and has resulted in pain that involves the whole eye,the upper jaw and the dreadful migraine like headaches.
i'm totally pain free the first few hours after waking up and later on the pain kicks in to stay the rest of the day until the moment i close my eyes to go to bed or just to give my eyes a little rest.
I don't use any painkillers at all,because i don't think that this is the right path for me. And the idea of using painkillers the rest of my life just to keep things bearable,well this thought obviously does not attract me very much.
However i'm strongly considering sclerals lately. I think this can very well be the ultimate thing to give the nerve endings in the cornea the protection they need in order to stop the ever increasing pain they cause.
Maybe it is even sufficient to just wear them occassionally and for short periods instead of wearing them permanently.
I think our nerve endings have become over sensitive because of the constant irritation they experience due to the poor tearlayer which does not protect the eyes enough.
I'm very curious to hear your opinion about sclerals as a weapon to fight eye pain with.

[MaryVa61]

Hi Poppy.

Have you already described this pain to your GP or a neurologist? I definitely would.

If it's muscle spasms being triggered by eye pain, Magnesium Citrate supplements (with Calcium) may help relax the muscles and prevent the spasms. Mg helps me a lot if I take the correct amount. It prevents my migraines, spasms in my jaws & neck TMJ pain. I've been on Mg for 13 years and only get those problems now if I buy the wrong dosage (too low) and don't take the right amount for a couple of months. My problem is beingn triggered by a genetic disorder I have that causes some fibromyalgia-like muscle spasms and some blood vessel abnormal functioning, among other things.

Mary

The last year or so I have been getting attacks of what I am sure is referred eye pain that started deep within the eye balls and has gradually spread all over my head...Yesterday I had a bad attack of several hours feeling like a drill had been used in the sides of my head right through to my eyeball, with my cheekbones and upper jaw aching and my eyeball throbbing.... I am wondering if there is anything I can do for this pain, I am thinking more of something like a migraine preventitive (even though this isn't a migraine, thought it might help) or something for neurological pain? The problem isn't suited to painkillers, as severe attacks come on suddenly and often do not last long enough for a painkiller to kick in, besides which, at times the severity of the pain would not be touched by over the counter painkillers, and I don't want to take anything addictive. I am already taking endep for other reasons, which is supposed to be of help with migraines etc, but I don't think it is doing anything. Thanks

[poppy]

Hi poppy,

However i'm strongly considering sclerals lately. I think this can very well be the ultimate thing to give the nerve endings in the cornea the protection they need in order to stop the ever increasing pain they cause.
Maybe it is even sufficient to just wear them occassionally and for short periods instead of wearing them permanently.
I think our nerve endings have become over sensitive because of the constant irritation they experience due to the poor tearlayer which does not protect the eyes enough.
I'm very curious to hear your opinion about sclerals as a weapon to fight eye pain with.

RE the sclerals: I don't think they would help me (with the deep eye pains anyway) - as I think these pains in my case are from inflammation rather than surface issues. I've had much worse surface pain than at the moment and yet only got the deep pains relatively recently. In your case your pain does seem to be a bit more surface/dry related as they follow a pattern of gradually worsening over the day (dry eye tends to get worse during the day for a lot of people). My deep eye pain does not follow a pattern and can go from fine to agony to fine again in the space of 10 minutes. So maybe sclerals would help you. That said, I always have been a little sceptical that dry eye alone can cause deep eye/head pain (beyond mild aching from eye strain type issues). Sometimes I think the doc just blames the eye pain on the dry eye because they don't want to admit they don't know.

[poppy]

Hi Poppy.

Have you already described this pain to your GP or a neurologist? I definitely would.

If it's muscle spasms being triggered by eye pain, Magnesium Citrate supplements (with Calcium) may help relax the muscles and prevent the spasms. Mg helps me a lot if I take the correct amount. It prevents my migraines, spasms in my jaws & neck TMJ pain. I've been on Mg for 13 years and only get those problems now if I buy the wrong dosage (too low) and don't take the right amount for a couple of months. My problem is beingn triggered by a genetic disorder I have that causes some fibromyalgia-like muscle spasms and some blood vessel abnormal functioning, among other things.

Mary

Thanks for the tip Mary. No haven't spoken to my GP about the pains, my GP's mind has been poisoned by the many hateful eye doctor letters saying it's just dry eye, stop sending this patient to us... all eye issues are off limits for discussion. I guess I will have to find a new GP who doesn't have access to my medical records in order to discuss this matter.

[MaryVa61]

That's horrible Poppy! My experience with eye docs is pretty bad too. They don't seem to get that if the dry eye isn't severe enough to be causing all the severe pain, they need to try to figure out what is causing the pain or make suggestions/referrals to other specialties.

It was hard not to give up, in order to avoid the emotional turnoil of those doctor's appts, but the pain spurred me on to seeking out other doctors until I got my answers. I saw rheumatologists, neurologist, allergist and a dermatologist. Gathered hints from each to pass on to the next doc and to help me decide what kind of doc to see next. The diagnosis came from the derm, but she wouldn't even have tested me if not for 2 of the other docs (slightly) suspecting allergies or chemical skin allergies and suggesting I be tested.

You should definitely see another doc if you can't even discuss you eye problem with your doc. It may not be DES, or it may be, but it's definitely SOMETHING.

Mary

[Sanjeev]

Possible nerve compression

I've been having some truly ghastly symptoms similar to those described. I conducted detailed analysis after meeting a number of doctors - see details here: http://sabhlokcity.com/2012/04/fight...ds-of-doctors/

Finally I've formed a theory of how the brain stem might get compressed (thus affecting nerves that serve the eyeballs). Details here: http://sabhlokcity.com/2012/04/using...to-fight-pain/

As a result of exercises specifically focused on this cause, I experienced immediate relief which has lasted me for more than 24 hours. I've still got some eye surface symptoms but acute pain/headache, etc. has almost disappeared. I suspect this indicates dry eyes PLUS nerve compression.

[littlemermaid]

Poppy, Any idea which nerve is doing this? is it trigeminal neuralgia? cranial nerve 5 branches to the eye inc tearing and surface (Wiki). http://neurotalk.psychcentral.com looks helpful.

[poppy]

Poppy, Any idea which nerve is doing this? is it trigeminal neuralgia? cranial nerve 5 branches to the eye inc tearing and surface (Wiki). http://neurotalk.psychcentral.com looks helpful.

Hmm, my problems do have quite a few similarities with that, but it doesn't seem like a really close fit. Plus it would be rare in my age group.

I note that the neuralgia is often triggered by doing things like brushing the teeth. The only external trigger for me seems to be doing things to my eyes. Wiping a piece of gunk from the corner of the eye or applying a large glob of gel has occasionally set off waves of throbbing pain through the eye ball (without surface pain). I wonder if anyone else gets this.

[MaryVa61]

Sanjeev,

Your journey and symptoms are interesting. Sometimes we have to do the problem-solving ourselves, at least to some degree, don't we? There are a couple of us in this group who have Erythromelalgia and a hereditary disorder of connective tissue, so we have some neurovascular issues, autonomic dysfunction and skeletal abnormalities (not obvious to look at us) that cause sublaxations, muscle spasms and tendonitis everywhere, and compressed nerves can certainly be part of the picture. The Erythromelalgia and autonomic dysfunction cause severe burning pain and flushing, so your post caught my eye. Since our disorders are rare, most doctors have been no help. But fortunately, a few have helped and especially the geneticists who specialize in our disorders. Eye symptoms are a huge part of determining the diagnosis, yet the eye docs I've seen knew zero about HDCT's.

Some of my eye problems appear to be caused by my HDCT (ie: Marfan; Ehlers-Danlos, etc) but my worst eye pain was caused by type IV hypersensitivities to some chemicals, a problem that may also be related in some way to my HDCT but that connection is uncertain.

I had biofeedack once in the past and it was helpful in learning what posture and muscle movements of my head caused increased tension and pain in my jaw and neck. I would think those same muscles could affect the eyes, so stretching excercises and improving posture make sense to me to try.

Mary

[spmcc]

Calmare Pain Therapy

Here's a link to Calmare, the pain scrambler used at the Boston Foundation for Sight: http://www.calmarett.com/.

I don't know anything about it except for that link! But I know others here have done it and maybe if you search DEZ, you'll get a little more info.