SLK + extreme blepharospasm

[Kristylew]

Anyone else have SLK with blepharospasm so bad it causes eye to completely close?  

Bilateral SLK for years but much worse on Left.  I get pain and then a tugging of muscles into temple.
As the foreign body pain increases so goes the tightening to the point both lids are drawn together.  Happens a few times a day to where it is interfering with my professional life.  Restasis, Lotemax, AcuVail, lubricants..... Nothing changes the outcome.  This has been going on for years and ophthalmologist shrugs and doesn't know what to do. I have caught this 'eye fit' on video several times.  Anyone else have this problem?  Insurance won't pay for Botox which has been the only thing suggested by my doctor. (He's now out of practice so I'm out here in left field not sure what to do.

Thank you
#SLKsucks

[nschwagler]

I feel I have same problem--SLK with squinting and muscles tugging. Any suggestions? Thanks.

[JohnHaganMD]

Answered in the message you sent to me.

[Kristylew]

I've been unsuccessful finding a neurologist, neuro-ophthalmologist or doctor of occuloplasty that has experience with Botox for extreme Blepharospasm or SLK who accepts my insurance.  UnitedHealthcare through the marketplace.  Symptoms getting worse.  The office where my former ophthalmologist worked has also been trying to help me get referred but even they can't find anyone who does the Botox for this condition that accepts my insurance.  The red glassy eyes are embarrassing and the left eye pain and involuntary closing is interrupting my profession.  I wish I had something better to update.  Pulling my hair out here.  

[JohnHaganMD]

Best of luck. Let us know how all of this turns out.

[Kristylew]

Yes, numerous thyroid work ups over the years but never abnormal.  One GP feels maybe Hashimotos but just catching blood work at wrong time to detect it.  

[JohnHaganMD]

No relation to eye color. This is the best review I can find. Be sure you have been evaluated for thyroid disease under/over action.   Excellent: http://emedicine.medscape.com/article/1194578-overview

[Kristylew]

Did I read, years ago, that eye color can contribute to SLK?  I have extremely light colored eyes for a brunette.  Just curious

[Kristylew]

Wow!  Very impressive and positive approach.  If you need a case study or participant I would be willing.  Thank you again for your time.

[JohnHaganMD]

The theory is during a migraine there is constriction of blood vessels (vasoconstriction). This can affect any blood vessels in the body. The constriction can be so severe that it damages the tissue permanently. We know this happens in the brain as migraine patients, especially smokers, diabetics or women on BCP have permanent visual field defects at a rate much higher than expected.  Our studies indicate that beta blockers used in eye drop form are more effective than oral when take for acute migraines.  See http://ophthalmologytimes.modernmedicine.com/ophthalmologytimes/news/acute-migraine-sufferers-may-find-relief-beta-blocker-eye-drops

[Kristylew]

When you say migraine patients have higher rates..... Do you know yet if it's due to the actual underlying condition that causes the migraine or are you thinking it's because we've tried every remedy known to man for the last 35 years lol.  Oral beta blockers, calcium channel blockers, lidocaine in nostril, anti-anxiety, anti depressants, depakote, ergotamines, acupuncture, biofeedback and hormones lol.  Sumatriptan was my life saver.  But, possibly not without some collateral damage.

[Kristylew]

Bless your heart!  I've learned more in last hour than I have in last decade.  My ophthalmologist was elderly but I was his first SLK patient.  I will certainly try to find specialist who will accept me as a new patient.  I cannot thank you enough for your help.  I feel I have an informed direction to take after all these painful and stagnant years.  

[JohnHaganMD]

You have chronic migraine.  Botox is also approved for chronic migraines.  So you have two indications for insurance coverage: chronic migraine and blepharospasm. Please see product info:  http://www.botox.com/    Suggest you find a physician at U of Indiana in neurology or ophthalmology or both. In Eye Dept good choice might be ocuoplastic surgeon or neuro-ophthalmology.  In neurology you would want a neurologist that actually does Botox injections.   Both dry eye symptoms and SLU and the blepharoplasm could be related to dry eyes which can get better or worse on HRT. I do think they are related. If you were on Restasis for 8 months and didn't help that is an adequate trial.  Go on my home page and read my blog on dry eyes and also on the new treatment we're developing for acute migraine using beta blocker eye drops. Migraine patients have higher rates of cranial nerve problems including Bell's Palsy, paralysis of eye cranial nerves 3,4,6 and sudden hearing loss (cranial nerve 8) Quitely likely problems with cranial nerve 7 which could cause blepharospasm.  

JCH MD

[Kristylew]

Point I meant to make was I've been using Imitrex since 1991 non stop.

[Kristylew]

Thank you so very much Dr.  I was on Restasis when it first came out.  I was on it for 8 months. Had to pay 100% out of pocket and could no longer afford it.  I noticed no real improvement as my eyes never have typical dry eye feelings and I have no discomfort until the Blepharospasm starts.  This time around I've been on the Restasis for three months and yet to see any improvement in frequency or severity of spasms.  You have given me something to consider though...... Which came first the chicken or the egg.  In the last 17 years I had a two year remission of sorts and it was while I was on Hormone Replacement Therapy.  Went off HRT and SLK/blepharospasm flared up again.  Coincidence?   Also, I was in on the double blind study for Imitrex before it was on the market.  I have used Imitrex numerous times per month for Migraine.  Otherwise I'm healthy.  Could Imitrex have caused my condition.

I no longer have an ophthalmologist but would make a trip to IUMed Center in Indianapolis if I could referred.

Thank you again for replying.  It feels good knowing someone cares and there is hope.    

[Kristylew]

Numerous times each day o have to manually pull my left upper lid off my eyeball to get any relief from the foreign body pain.  I'm desperate for relief as I have to excuse myself from business meetings when the pain and eye closing is bad.  Thank you for any suggestions