My symptoms: itching burning then aching eyes and eventually the pain settles in my right eye and turns into a migraine relieved by Imitrex. I do not get stabbing pains, just 24/7 pain and discomfort in both eyes, but my right eye is worse.. Sometimes I just want to scream the pain is so unrelenting....
For a few years now I've been diagnosed with severe dry eye. I can't count the number of opthalmologists
I've been to in that period of time, but it is more than ten. Recently I took a trip to Cedar Sinai in LA (I live in Tucson) where I booked a pain specialist, Steven Graff-Radford, a fellow on this websites doctor's list, and a neuro-opthalmologist named Bose. Saw the pain guy first and he thought it was some kind of daily persistent HA of the migraine or cluster variety. The neuro-opthalmologist discovered I had severe dry eye, blepharitis, and corneal abrasions. I was sent home with punctal plugs, a course of Tobradex, a steriod antibiotic drop and Topamax. Eyes felt a bit better, at least the dry eye aspect in about 3 weeks. The eyeache and headache no better on the Topamax, probably worse. At any rate now I'm off the Topamax and trying Indomethacin for a week. Bottom line eyes still ache and I'm looking for diagnosis. It was a few days ago when I started googling around and found this website. It was actually a post by member Susan Richey that caught my interest.
This ache in my eyes seems like it could be TN to me but the experts didn't even bring it up. Does any of my story sound like it could be TN? How does one get a diagnosis.
My story begins in 2008 when I was diagnosed with Graves disease. It’s a thyroid autoimmune disease that made me hyperthyroid. I was sick for a long time… Anyway, in 2009 I had a radioiodine treatment that killed off my thyroid. Since that time, my eyes have been dry and painful. My endocrinologist at the time wrote those symptoms, as well as my ear pain off to my thyroid dysfunction and possibly the radioiodine treatment. It was also thought that because i still have positive antibodies for Graves that it was either that or another autoimmune disease running in conjunction with Graves. For 2 years I complained until I couldn’t take it anymore and went to an opthamalogist that specialized with Graves disease because it can sometimes settle in your eyes. That was ruled out. I was told it was migraines and dry eyes, and told to take Advil, and continue with my eye drops. When my migraines got so bad that I couldn’t take it anymore, I sought a neurologist. She put me on Propananol and Imitrex. I had a bad reaction to Imitrex and tried Maxalt. Neither helped me with the migraines in my eyes - especially my left eye. My story goes on from there, because when I was finally diagnosed with TN I may have also been having another shingles outbreak. My personal feeling is that my immune system has been attacking me since I first got sick with Graves disease in 2008. It’s evident in the fact that even though I technically have no thyroid production, I still have positive antibodies in my bloodwork.
Seeing one this coming Monday. Imitrex seems to help me when the eye thing turns into a migraine like eyeache (if that makes sense), but not for the chronic everyday pain. Did you try Gabapentin? I'm thinking they will prescribe that next. I was thinking shingles too, but every doc I see says no way. Oh well.. the search for relief goes on. Hope you feel better...
I am on 1200mg of Gabapentin. It helps the shocks not the ear or eye pain - enough. I get break through pain. My shingles never surfaced, so it is only a clinical dx based on my history. I am off to see my PCP today.
Going to the neurologist was the best decision I made for myself. Good luck to you!
Your description seems to have more of the flavor of SUNCT headaches or Cluster headaches, than of TN, DE. The positive response to Imetrex is particularly indicative, as we don't usually see that in TN patients.
I had never heard of SUNCT before and cluster headache descriptions are far more painful than what I have I think.
My pain is more chronic continual low to medium level boring kind of pain that also affects my upper teeth.
Graff-Radford did mention clusters but I also have severe dry eye and could not tolerate Topamax for that reason. The drug gave me more HA's going from 1 full blown migraine every two weeks in addition to the daily pain to 1 every day.
The pain as well as being in my eyes seems to move around my face a lot. Always on the pathway of some part of the trigeminal nerves. I'm hoping the neuro will have some answers, but it seems they try one drug after another and see what works. Is there an expert anywhere on the west coast or Arizona that anyone knows of? I have another neuro-opthamologist lined up but the appointment is way off in August.
Red,
Thanks for offering your expertise on the subject!
My story begins in 2008 when I was diagnosed with Graves disease. It's a thyroid autoimmune disease that made me hyperthyroid. I was sick for a long time.... Anyway, in 2009 I had a radioiodine treatment that killed off my thyroid. Since that time, my eyes have been dry and painful. My endocrinologist at the time wrote those symptoms, as well as my ear pain off to my thyroid dysfunction and possibly the radioiodine treatment. It was also thought that because i still have positive antibodies for Graves that it was either that or another autoimmune disease running in conjunction with Graves. For 2 years I complained until I couldn't take it anymore and went to an opthamalogist that specialized with Graves disease because it can sometimes settle in your eyes. That was ruled out. I was told it was migraines and dry eyes, and told to take Advil, and continue with my eye drops. When my migraines got so bad that I couldn't take it anymore, I sought a neurologist. She put me on Propananol and Imitrex. I had a bad reaction to Imitrex and tried Maxalt. Neither helped me with the migraines in my eyes - especially my left eye. My story goes on from there, because when I was finally diagnosed with TN I may have also been having another shingles outbreak. My personal feeling is that my immune system has been attacking me since I first got sick with Graves disease in 2008. It's evident in the fact that even though I technically have no thyroid production, I still have positive antibodies in my bloodwork.
Have you seen a neurologist?
Yes I have. I have a history of migraines but not with these eye symptoms. He thinks it may be a migraine. Wants to try noritrypiline. I also have seen the pain guy at Cedars Sinai (on the list of doctors here, Graff-Radford) who thinks it may be migraine or cluster, and started me on migraine preventatives too (Topamax, didn't work) What complicated matters for me is I had a CSF leak repaired in 2010. But the neurosurgeon and the pain guy do not think the present eye pain and the CSF leak are related. According to at least one doc, they may be. In other words a dural problem can be expressed as eye pain. See The Causes and Effects of Eye Pain and this quote:
“I would first approach eye pain anatomically,” said Dr. Digre. “The eye has rich trigeminal innervation and the trigeminal system is huge, with the first division radiating to the eye. Because this first division also innervates the dura, a dural problem may present as eye pain.”
Your posting perhaps illustrates one of the current discussions underway in segments of the medical community that most centrally concern themselves with pain. There seems to be a lot of word-smithing going on. But I see very little evidence of positive change that is meaningful for patients. The following is an abstract from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1765583/pdf/v072p0ii19.pdf
Trigeminal Autonomic Cephalgias:
The trigeminal autonomic cephalgias (TACs) are a group of primary headache disorders characterised by unilateral trigeminal distribution pain that occurs in association with prominent ipsilateral cranial autonomic features. The group comprises cluster headache, paroxysmal hemicrania, hemicrania continua, and short lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing (SUNCT syndrome). Firstly, they must be differentiated from secondary TACs, and other short lasting primary headaches (table 1), and then from each other. The concept of a short lasting headache is naturally somewhat artificial [emphasis mine] in terms of defining “short”—that said, a typical attack time is less than four hours, in contrast with the major differential diagnosis of migraine in which attacks are usually longer. The differentiation between TACs is essential since the treatments are very different. Hemicrania continua is a continuous headache and should be considered in the differential diagnosis of relatively long lasting chronic daily headache (see page ii2).
The TACs are relatively rare,which is likely to be why they are poorly recognised in primary care. TACs will thus be referred to neurologists eventually, offering an excellent opportunity to diagnose and treat these patients. It is noteworthy that each of the TACs has been seen in paediatric practice. The importance of recognising these syndromes is underscored by their excellent but highly selective response to treatment.
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The reason why I discriminate between SUNCT headaches and TN is that the courses of treatment for the two are quite different. Likewise, SUNCT has features which are quite different from most cases of TN. So I point out SUNCT as an avenue to be explored which may imply a different course of treatment.
Your posting perhaps illustrates one of the current discussions underway in segments of the medical community that most centrally concern themselves with pain. There seems to be a lot of word-smithing going on. But I see very little evidence of positive change that is meaningful for patients. The following is an abstract from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1765583/pdf/v072p0ii19.pdf
Trigeminal Autonomic Cephalgias:
The trigeminal autonomic cephalgias (TACs) are a group of primary headache disorders characterised by unilateral trigeminal distribution pain that occurs in association with prominent ipsilateral cranial autonomic features. The group comprises cluster headache, paroxysmal hemicrania, hemicrania continua, and short lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing (SUNCT syndrome). Firstly, they must be differentiated from secondary TACs, and other short lasting primary headaches (table 1), and then from each other. The concept of a short lasting headache is naturally somewhat artificial in terms of defining “short”—that said, a typical attack time is less than four hours, in contrast with the major differential diagnosis of migraine in which attacks are usually longer. The differentiation between TACs is essential since the treatments are very different. Hemicrania continua is a continuous headache and should be considered in the differential diagnosis of relatively long lasting chronic daily headache (see page ii2).
The TACs are relatively rare,which is likely to be why they are poorly recognised in primary care. TACs will thus be referred to neurologists eventually, offering an excellent opportunity to diagnose and treat these patients. It is noteworthy that each of the TACs has been seen in paediatric practice. The importance of recognising these syndromes is underscored by their excellent but highly selective response to treatment.
================
The reason why I discriminate between SUNCT headaches and TN is that the courses of treatment for the two are quite different. Likewise, SUNCT has features which are quite different from most cases of TN. So I point out SUNCT as an avenue to be explored which may imply a different course of treatment.
Regards, Red
Hi Red,
What are the differences in treatments between a SUNCT HA and TN pain in terms of drug treatments?
If one or the other regimen works wouldn't it be considered diagnostic by most MD's? It seems this has been my experience so far.
I've been put on Topamax, Indomethacin, and now I'm slated to try Nortriptyline.
Indomethacin works in Migraine and SUNCT. It almost never works in TN, at least that I've read...
Regards, Red
Thanks Red, I am taking Indomethacin and it does not seem to touch the eye pain. That pain is just always there . Sometimes it is worse other times with no rhyme or reason that I can detect.