Iritis and possible Trigeminal Neuralgia

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andikeesi
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Joined: Sat Aug 13, 2011 10:43 am

Iritis and possible Trigeminal Neuralgia

Post by andikeesi » Sun Jul 08, 2012 2:31 pm

I was diagnosed with Iritis a few years ago, with very "angry" eye for the first year and a half or so. During that time I had a very occasional excrutiating ear pain, which has since taken over (with no angry eye for about a year) with the ear pain getting worse in frequency ( about twice a week like clockwork), duration, and strength. I have been seeng a Rheumy, and had almost all tests (with exception to an xray to rule out sarcoidosis, which is scheduled soon) being negative (except for heel spurs, lol). The Rheumy was concerned about possible relapsing polychondritis (which I just recently found out that my estranged mother is being treated for with lupus), but I only have the pain with no redness or swelling. In the last month and a half, a new symptom has appeared, where the right side of my mouth goes numb (which has happened about 6 times). I told my Rheumy that I have also realized that if I press on the main trigeminal area by my ear, it triggers the horrible pain in my ear. My Rheumy explained that was part of the trigeminal nerve and referred me to a Neurologist(physicians assistant). After describing the pain/symptoms to the Neuro, he said he was 99% sure it was trigeminal neuralgia. He wants me to try lyrica to see if the condition gets any better, which I will do after I keep a detailed log on pain etc to reference. He said he does not know of a condition that could cause both trigeminal neuralgia and iritis but he will meet with the other doctors to discuss and made me an appt with the head neuro in the office. But in the meantime, I will do what the rheumy told me to doand just wait for new symptoms for the "black cloud" mystery disease that they keep telling me is causing all of this mess in me. If anyone, or Mike, has any thoughts on any correlation between the two diseases (if I in fact have them both) please let me know. By the way, I am a 38 year old mother of 4 teenagers and have been pretty healthy otherwise, with exception to seizures starting at 17 which they thought was a result from a car accident about 6 months prior 9 at the time MRI showed 2 lesions). I have been seizure free for quite a few years, with no meds in about 15 years, I stay away from flashing lights and watching trains go by which seem to trigger them.

Mike Bartolatz
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Joined: Fri Feb 06, 2004 9:58 pm

Re: Iritis and possible Trigeminal Neuralgia

Post by Mike Bartolatz » Sun Jul 08, 2012 6:01 pm

Trigemenal neuralgia can be associated with Sarcoidosis linked to uveitis. Lyme disease causes it too as can sjogren's syndrome and Systemic lupus erythematosus all of which can have uveitis connected to it. I strongly urge you to get an ocular immunologist involved in your diagnosis and treatment. how the inflammation inside your eye appears can sometimes indicate the potential link to an autoimmune disease or inflammatory disease process that has to be controlled to stop uveitis from recurring. Relapsing Polychondritis is also seen along with uveitis.
other conditions can also present with trigemenal neuralgia such as from viruses like the herpes zoster and herpes simplex viruses which can also cause iritis. Sarcoidosis can attack the ear as well so you might want to get an Ear Nose and Throat doctor involved. severe dry eyes and dry mouth are also linked to many of these things and a lip biosy can help tell the underlying condition. this is important in treatment of dry eyes because what works for some things to get the lacrimal gland to produce fluid such as Restasis, doesn't work for lacrimal gland inflammation linked to sarcoidosis (methotrexate is needed). additionally some meds just don't help like Plaquenil or drugs of similar composition or enbrel which is a TNF A blocking drug but doesn't help in uveitis patients,
tell me where you live and I will suggest the closest true ocular immunologist for a consultation. you may have to travel to see one of them however as they are usually working out of University Medical Schools or major Eye hospitals around the world.

I hope this helps,
Mike
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andikeesi
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Joined: Sat Aug 13, 2011 10:43 am

Re: Iritis and possible Trigeminal Neuralgia

Post by andikeesi » Wed Aug 22, 2012 1:18 pm

Mike,
Thank you for all your info. I didnt want to respond until I had some more info. I went to get a chest xray, it came back negative. I never did start the medication for the possible trigeminal neuralgia. Oddly enough the ear pains have lessened quite a bit. I did have a slight onset of iritis, but it seems my body does a good job of fighting it sometimes without meds. The facial numbness has not reoccured. I am very frustrated, it seems all the tests keep coming back negative. Would sarcoidosis definitly show up in a chest xray even if I am having no chest symptoms? Could it still be AS even though I am not HLAB27 positive? I am going back to my original thoughts, before seeing the neurologist, that the ear pain is not neurologic. Since there is definitly movement in the cartilage, almost like there is a separation where it cracks and pops at the end of the pain. To answer your question, I live in the Daytona Beach area (central Florida). I am steps away from dropping all the doctors here and starting fresh. I may demand that my rheumy do a biopsy on my ear to figure that out for sure. So far I am only sure about the Iritis diagnosis. It is very frustrating to be experiencing pain and knowing there is a disease you have but not knowing what it is. You have been wonderful to devote your life to helping people like me having someone to turn to!

Thanks Again!

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Iritis and possible Trigeminal Neuralgia

Post by Mike Bartolatz » Wed Aug 22, 2012 4:06 pm

please contact DR Janet Davis or Dr Victor Perez at Bascom Palmer who are excellent ocular immunologists. their knowledge eye involvement in other systemic disease processes might help you to connect the dots so to speak and get you on medications.
their contact information is available at http://www.uveitis.org in the patient information section of the site.

you can have just about anything without having a given marker for a disease. these markers are present in about 70% of patients. some appear a decade or more after having iritis for example or vice versa.

I am also glad that I've been able to help you a bit. hopefully the doctors above can help you too.

wishing you the very best,
mike
Mike Bartolatz
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andikeesi
Posts: 4
Joined: Sat Aug 13, 2011 10:43 am

Re: Iritis and possible Trigeminal Neuralgia

Post by andikeesi » Tue Jul 14, 2015 8:04 am

Ok, 3 years later and an update. I still have iritis flaring about 5-8 times a year. "Ear" pain seems to be my biggest complaint. I have seen many doctors. I never did take the lyrica, while logging only 1 "ear pain" it completely stopped! Ugghh, for 1 year it didn't return. On the bright side, I would have thought lyrica was a miracle. Upon researching , I really didn't feel like TN was a good fit. So I have been patient. Still continuing with the neurologist, he found seizure activity in my brain and we got off on a tangent. Since I'm not having active seizures that I know of, I stopped meds and feel better as far as new side effects related to seizure meds. My new family practice dr, thought the ear pain was parotid stones. Nope, no swelling. I have had low vitamin d and elevated liver enzymes for about 8 months, so he sent me to a GI. The GI was concerned about the liver due to my age (41), don't drink, don't take meds and haven't that would affect liver not even Motrin(seizure meds, Topamax, is liver safe). Just had a liver biopsy that showed mild to moderate liver damage(2/3 and 2/4 on their scale, fibrosis) with fatty liver. My concern is that he said I'm 1/2 way to cirrhosis, I am overweight but have not been until about 4 years ago. I have great cholesterol, bp, no type 2 diabetes. I am convinced that the liver issue is autoimmune or caused by whatever is going on in my body. The GI dr sent me to an ENT, who said i'm a zebra going to horse drs. He said I'm only going to find answers at a teaching hospital so he gave me a referral to Shands Hospital Neuro, he feel like its trigeminal....UGGGHHH! Well frustrated again, I researched and found the source of my pain. I am very certain that is a Vascular headache.... very disappointing that a pain so excruciating that drops me to my knees in pain crying that progresses to excruciating and then stops(gone as fast as can be imagined) can be called a headache. My FP dr did mention temporal arteritis but it was a much higher area where he was pressing (near my temple). Mine is much lower in the little dip in front of my ear, and into my ear cartilage. I think I'm finally getting somewhere, and hoping everything is related so I can finally put a name to this crazy medical mystery. My fear is that if all this inflammation is causing damage, waiting on drs to figure it out , it could be to late. Any Ideas would be appreciated. I'm waiting on my appt. at Shands and hope to get somewhere soon.

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Iritis and possible Trigeminal Neuralgia

Post by Mike Bartolatz » Wed Jul 15, 2015 1:39 pm

is your iritis recurrent, tapering off steroids and then returning?
do you have cold sores or did you have chicken pox as a child? the herpes family of viruses can cause iritis and trigeminal neuralgia.

autoimmune hepatitis can sometimes appear along with uveitis.

sarcoidosis, Sjogren's syndrome, systemic lupus erythematosus can all have systemic disease, trigeminal neuralgia associated with them.

you have low Vitamin D. did they test you for vitamin D1,25 levels? vitamin D25 is often low in sarcoidosis patients and D1,25 is NORMAL at no more than 45. serum calcium levels could be evaluated. HIGH serum calcium can cause problems with the entire vascular system. it is sometimes elevated in sarcoidosis patients. Calcitriol is given to increase vitamin D25 levels but this can cause D1,25 to skyrocket in a sarcoidosis patient and then serum calcium goes sky high as well and you could end up in calcium crisis. IF you have sarcoidosis.

the point you mention of pain just behind the Jaw and below the ear could be linked to sarcoidosis or Sjogren's syndrome. usually a parotid gland but there are also lymph nodes that can become inflamed in this area.

did they test you for amyloidosis which can occur in the above conditions?

did they do a scan of your lungs? did they test you for SSA and SSB linked to Lupus?
do you have mutton fat like Keratic precipitates? (on the back of the cornea from inflammation)? this is sometimes found in anterior uveitis linked to sarcoidosis?

do you have optic neuritis present? cells in your vitreous? any cystoid macular edema tested for with Fluorescein angiogram or with Optical Coherence tomography of the retina? any new blood vessels forming? do you see flashes of light in your peripheral vision?

did you get to Bascom Palmer in Miami to see Either DR Janet Davis or Victor Perez, uveitis experts/ocular immunologists who can help to figure this out and start systemic DMARD treatment for the uveitis if possible with since you have liver problems there may be few options for them?

inner ear can become inflamed in Sarcoidosis patients.

a biopsy of a salivary gland can help to determine which disease is present if you have dry mouth which could be linked to the above condtions.

a biopsy of the conjunctiva can also help if you have severe dry eyes causing conjunctivitis.

did you have MRA of your brain to look for lesions, demyelination of the optic nerve an inside the ear?

XRAY is often negative for Sarcoidosis. you need a PET scan, MRA or CT scan with contrast. what are your serum ACE levels?

a full body PET scan can look for granuloma formation which can occur anywhere systemically in Sarcoidosis to include bones, heart, kidneys, liver, brain ETC. it can also image enlarged lymph nodes inside your body linked to sarcoidosis and provide a point of biopsy if present to diagnose.

PLEASE get to Janet Davis or Victor Perez at Bascom Palmer. contact information at http://www.uveitis.org PATIENT information section of the site on the SPECIALIST list.

Wish you the very best,
Mike Bartolatz
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