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DrRussMD, Board Certified Physician
Category: Eye
Satisfied Customers: 65266
Experience:  Internal Medicine--practice all of internal medicine, all ages, family, health, prevention, complementary medicine, etc.
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For the past ten years I have had bouts of severe pain

Customer Question

For the past ten years I have had bouts of severe pain starting between my eyes and in my sinuses. As they got worse they would occasionally move to the left side of the head and have a throbbing quality. These were originally diagnosed as sinus headaches but there was no relief from 2 surgeries, antihistamines and 5 allergy tests showed negative. Later these were diagnosed as migraine. There was some improvement using the Triptans for the severe headaches but the only preventative to help has been amitriptyline with very limited effectiveness. Botox also had no effect. As the years went on the pain became more and more frequent and is now almost a constant pain/pressure between and behind my eyes with occasional "migraines" severe enough to put me in the ER. Also during the extreme headaches I get a lot of swelling at the top of my nose and between my eyebrows. The only help has been increasing levels of painkillers (hydrocodone) I have gone through multiple doctors including 3 neuros and am currently at a pain management clinic. The new doctor I am seeing thinks this may be a form of Trigeminal Neuralgia. I have read about TN and also the atypical trigeminal neuralgia and it seems likely this is the case combined with migraine. Does this sound possible with my symptoms? about 10 years ago I had my tear ducts cauterized by an opthamologist who gave me several injections directly into the corners of my eyes. Could this have damaged the nerve and started these symptoms? The timing is almost exact with the onset of the pain the only difference is that now it is almost constant and I am having a very difficult time functioning. If it matters I am a 39 year old male in otherwise great health.
Any help would be appreciated, thanks.
Submitted: 5 years ago.
Category: Eye
Expert:  Camille-Mod replied 5 years ago.

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Expert:  DrRussMD replied 5 years ago.
Hello from JA
I understand the situation
But what is your specific question
Customer: replied 5 years ago.

My questions were if these symptoms sound like a form of atypical trigeminal neuralgia or if not what could they be? If so could they have been caused by the eye surgery 10 years ago and if so what can be done now.

Expert:  DrRussMD replied 5 years ago.
Nothing to do with the surgery 10 years ago.

Do these symptoms completely come and go?
Customer: replied 5 years ago.

I have daily pain/pressure between and behind my eyes which varies in severity. This will frequently lead to a much more severe headache that doesn't respond to anything but high levels of painkillers. My last ER visit lasted 6 hours and I had 8mg of Dilaudid, injections of anti-nausea drugs, benadryl and Toradol. 8 hours after returning home the headache was back at almost the same levels.

Expert:  DrRussMD replied 5 years ago.
but this comes and goes completely is that correct?
Customer: replied 5 years ago.

I wouldn't say it comes and goes completely. The pain between my eyes is almost always constant but varies from moderately uncomfortable to incredibly painful. Usually there is swelling involved as well.

The severe attacks are intermittent and usually occur 1-2 times per week and last from a few hours to a couple of days. Sometimes these are relieved by the triptan drugs but other times not.

As the years have passed this happens more and more frequently. Another symptom that doctors seem to dismiss is that about 5 years ago when this pain was at its worst I was put on Topomax for migraine prevention. This caused me to lose about 60lbs and I am already a thin peson. Since stopping that treatment I have gained back only 20lbs or so and have trouble maintaining weight.

Expert:  DrRussMD replied 5 years ago.
Lets assume that it is atypical TG
What meds have been given for this?
Customer: replied 5 years ago.

Nothing yet as this has only recently been mentioned by my new dr. I was on Gabapentin 200mg 3x per day but did not have any reduction of symptoms.

Any comments on the weight loss?

Expert:  DrRussMD replied 5 years ago.
Failure of gabapentin would go against trigeminal neuralgia
You could try lyrica as an alternative.
Response to tyrptans indicates migraine or cluster headache.
This could be a variant of cluster headache, in which case it would respond to oxygen therapy acutely, tryptans and as a preventative calcium channel blockers.
I am not sure this has been considered.

Diagnostically an MRI and an MRA [to look at the blood vessels that might be compressed causing TG] should be done.

Let me know if you have further questions. Just use reply if you are not done.

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