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Is this problem vascular or related to trigeminal or occipital nerve?
A year ago I experienced the worst headache of my life. It felt like the pain was eminating from inside my head around my eye and cheek/upper jaw. It lasted several hours. Nothing relieved the pain.
Prior to this headache, I'd had several other problems: 1)what I thought were repeated sinus infections over several years, as diagnosed by 3 general practioners or internists, with repeated antibiotic treatments, sometimes every month. Two ENT's, when consulted, found no sinus problems in CT scans, and doubted I was truly experiencing sinus infections.
2)Before this severe headache, I also had ulcers or some sort of "sores" on the inner eyelid of at least one of my eyes. Ophthamologist could not explain them. also severe pain in just one eye at a different time. Left eye then continued to ache, hurt, upper lid swollen. Went to several ophthomoligists who could find nothing wrong, though inserted puntual plugs for dry eye and once treated me with cortisone for lacrimal duct infection.
3)Thought perhaps a tooth problem as one area sore from time to time. Went to endodontists (2) twice, but could not be sure a root canal was needed. Couldn't zero in on an exact tooth.
4) went to immunologist because ENT doing bloodwork found my IgG was low. immunologist repeated test and found same, but said my symptoms at that time weren't bad enough to continue testing (this over a year ago).
5) Last Jan. I went to a neurologist to find out cause of that severe headache and continuting pain on left side (often just wind blowing on my head would hurt. Whole left side of head was tender to touch, but left eye is what really hurt. She said it was migraine. Ordered MRI, but it was not definitive because my braces caused refraction (?)so difficult to read, and prescribed imitrex and propanalol for high blood pressure. Propanalol caused more coughing (I've been coughing for years -- no one can really explain it) so my family doctor cahnged it to Norvasc. (I no longer take it; blood pressure back under control.) Imitrex helps sometimes, but not others.
6)Went to another neurologist for 2nd opinion, and he thought it sounded like a nerve problem and prescribed prednisone and neurontin. Neither seemed to help.
7)Since left eye continually hurting (upper lid swollen, inner corner and down side of nose hurting, along eyebrow and outer edge of eye, BURNING and WATERING) I went to another ophthomologist who suggested shingles and referred me to a neuro-ophthomologist.
8)SHe has been very thorough. Is trying to determine if it's related to shingles, or trigeminal nerve (causing coughing as well as burning, hurting eye), or vascular. Thinks perhaps it's a combination of both. Did a test to determine circulation in eye and found veins slow to fill. Ordered a carotid ultrasound, which came back normal. Tried Acylcovar, Lysine for herpes zoster. Nothing has really helped. Now suggesting an MRI with contrast to see if a vascular problem there. Also thinks I have arthritis of the "joint" at the inner corner of my eye.
In the meantime, my left eye is bothering me so much: upper lid particularly swollen, and swollen underneath, too (this morning the inner corner of both looked so full of fluid I could pop it with a pin), and hurting, burning. Sometimes sore as well; sometimes sharp pain if look down or to the side quickly.
Sometimes when I bend over I get a sharp wave of pain along the left side of my head and along eyebrow and inner and outer corners of eye.
Please, if you can tell from this lengthy description whether this is a neuralgia problem or a vascular problem, I would greatly appreciate it. WHen researching on your Webiste, several descriptions of occipital neuralgia sound similar to my symptoms; no one has suggested this yet. This has gone on for so long and no one seems to have an anser. I'm not sure what to do or where to go next. My husband keeps suggesting your clinic or the Mayo clinic. Any advice?
Many Many thanks --Barb
Prior to this headache, I'd had several other problems: 1)what I thought were repeated sinus infections over several years, as diagnosed by 3 general practioners or internists, with repeated antibiotic treatments, sometimes every month. Two ENT's, when consulted, found no sinus problems in CT scans, and doubted I was truly experiencing sinus infections.
2)Before this severe headache, I also had ulcers or some sort of "sores" on the inner eyelid of at least one of my eyes. Ophthamologist could not explain them. also severe pain in just one eye at a different time. Left eye then continued to ache, hurt, upper lid swollen. Went to several ophthomoligists who could find nothing wrong, though inserted puntual plugs for dry eye and once treated me with cortisone for lacrimal duct infection.
3)Thought perhaps a tooth problem as one area sore from time to time. Went to endodontists (2) twice, but could not be sure a root canal was needed. Couldn't zero in on an exact tooth.
4) went to immunologist because ENT doing bloodwork found my IgG was low. immunologist repeated test and found same, but said my symptoms at that time weren't bad enough to continue testing (this over a year ago).
5) Last Jan. I went to a neurologist to find out cause of that severe headache and continuting pain on left side (often just wind blowing on my head would hurt. Whole left side of head was tender to touch, but left eye is what really hurt. She said it was migraine. Ordered MRI, but it was not definitive because my braces caused refraction (?)so difficult to read, and prescribed imitrex and propanalol for high blood pressure. Propanalol caused more coughing (I've been coughing for years -- no one can really explain it) so my family doctor cahnged it to Norvasc. (I no longer take it; blood pressure back under control.) Imitrex helps sometimes, but not others.
6)Went to another neurologist for 2nd opinion, and he thought it sounded like a nerve problem and prescribed prednisone and neurontin. Neither seemed to help.
7)Since left eye continually hurting (upper lid swollen, inner corner and down side of nose hurting, along eyebrow and outer edge of eye, BURNING and WATERING) I went to another ophthomologist who suggested shingles and referred me to a neuro-ophthomologist.
8)SHe has been very thorough. Is trying to determine if it's related to shingles, or trigeminal nerve (causing coughing as well as burning, hurting eye), or vascular. Thinks perhaps it's a combination of both. Did a test to determine circulation in eye and found veins slow to fill. Ordered a carotid ultrasound, which came back normal. Tried Acylcovar, Lysine for herpes zoster. Nothing has really helped. Now suggesting an MRI with contrast to see if a vascular problem there. Also thinks I have arthritis of the "joint" at the inner corner of my eye.
In the meantime, my left eye is bothering me so much: upper lid particularly swollen, and swollen underneath, too (this morning the inner corner of both looked so full of fluid I could pop it with a pin), and hurting, burning. Sometimes sore as well; sometimes sharp pain if look down or to the side quickly.
Sometimes when I bend over I get a sharp wave of pain along the left side of my head and along eyebrow and inner and outer corners of eye.
Please, if you can tell from this lengthy description whether this is a neuralgia problem or a vascular problem, I would greatly appreciate it. WHen researching on your Webiste, several descriptions of occipital neuralgia sound similar to my symptoms; no one has suggested this yet. This has gone on for so long and no one seems to have an anser. I'm not sure what to do or where to go next. My husband keeps suggesting your clinic or the Mayo clinic. Any advice?
Many Many thanks --Barb
Dear Eureka:
If the tegratol does not work, you may ask about neurontin. We have had good results.
CCF Neuro MD
If the tegratol does not work, you may ask about neurontin. We have had good results.
CCF Neuro MD
MY MOM IS SUFFERING TERRIBLY FROM TRIGEMINAL NEURALGIA ON ONE SIDE OF HER FACE - THE DOCTORS SAY THERE IS NO CURE - ONLY TEGRATOL 200MG - WHICH ALSO SOMETIMES DOES NOT HELP - PLEASE ADVIZE WHAT ELSE I CAN DO FOR HER - I AM DESPARATE.
MANY THANKS
MANY THANKS
Dear Barb:
Do you still have your braces? If you do, the MRI with contrast will not be good, because as before the braces will confuse the issue. Anyway, you would need an MRI and MRA to best view the vasculature. If they are really concerned about a vascular problem, the gold standard is an angiogram.
The repetitive nature of your pain seems to rule out a trigeminal neuralgia. Although this is possible, the story you give doesn't completely fit. Two or three things come to mind. The first is Raeder's Neuralgia and the second is cluster headaches. The third is a cluster variant termed chronic paroxysmal hemicrania.
Raeder's is trigeminal pain together with with ocular sympathetic paralyis (ptosis and miosis) but with preservation of sweating. There is weakness of muscles innervated by the 5th nerve, together with pain behind the eye or nose (also some say jaw or temple) with lacrimation. Cluster and Raeder's are related and we have seen patients with symptoms of both. Cluster headache usually come in groups and can be like clock work. Pain is severe and lasts 15 -180 minutes in an unilateral orbital, supraorbital or temporal area. There is conjunctival injection, lacrimation, nasal congestion, forehead sweating and facial sweating, miosis, eyelid edema. Chronic proxysmal hemicrania has the previous features of cluster but attack frequency is multiple throughout the day (usually >5 per day).
The treatment is usually indomethacin, verapamil,and some reports talk about sumatriptan if bilateral (but we do not see good outcomes with sumatriptan).
I hopes this helps.
Sincerely,
CCF Neuro MD
Do you still have your braces? If you do, the MRI with contrast will not be good, because as before the braces will confuse the issue. Anyway, you would need an MRI and MRA to best view the vasculature. If they are really concerned about a vascular problem, the gold standard is an angiogram.
The repetitive nature of your pain seems to rule out a trigeminal neuralgia. Although this is possible, the story you give doesn't completely fit. Two or three things come to mind. The first is Raeder's Neuralgia and the second is cluster headaches. The third is a cluster variant termed chronic paroxysmal hemicrania.
Raeder's is trigeminal pain together with with ocular sympathetic paralyis (ptosis and miosis) but with preservation of sweating. There is weakness of muscles innervated by the 5th nerve, together with pain behind the eye or nose (also some say jaw or temple) with lacrimation. Cluster and Raeder's are related and we have seen patients with symptoms of both. Cluster headache usually come in groups and can be like clock work. Pain is severe and lasts 15 -180 minutes in an unilateral orbital, supraorbital or temporal area. There is conjunctival injection, lacrimation, nasal congestion, forehead sweating and facial sweating, miosis, eyelid edema. Chronic proxysmal hemicrania has the previous features of cluster but attack frequency is multiple throughout the day (usually >5 per day).
The treatment is usually indomethacin, verapamil,and some reports talk about sumatriptan if bilateral (but we do not see good outcomes with sumatriptan).
I hopes this helps.
Sincerely,
CCF Neuro MD
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