Graduating from Dry Eye (Almost) but Dealing with Severe Blepharospasm

[ltree]

Hello all,

After struggling with a sudden onset of severe dry eye six months ago, the last two eye doctors I saw both reported I do not have inflammatiion or dry eye anymore. However, the blepharospasm that came with it seems to be worsening, to a point that the opthalmologist says it is an extreme and tough case.

It is scary because from the online information I got so far, this can be another life-long condition that can only be managed, not cured. Somewhere it says it happens to 5 in 100,000 people (I think), and so far, none of the 12+ specialist I have seen seems to be able to know about or help me much on it. One dr gave me a painkiller/anti-anxiety drug which seems to help a tiny bit, but gives several intolerable side effects.

Anyone who is in a similar predicament? There seems to be other online communities, much less active, on dystonia/blepharospasm that I will look into next.

Also, I am still on serum drops, hyaluronic drops and other DES routines, also newly trying sclerals - I still get irritation especially at work and in public places.. but like I said, this condition seem to be now independent of DES.

Please share and thanks!

[PhoenixEyes]

Would it be worth seeing a neurologist in addition to an eye doctor if there is a motor neuron involvement for the spasms?


Here's some UK NHS info on blepharospasm:

Severe blepharospasm can be very disabling and embarrassing. However, an effective treatment is available. It involves having small injections of botulinum toxin (such as Botox) into the face to relax the muscles controlling the eyelids.

In some cases, your GP may consider referring you to a neurologist (a specialist in conditions affecting the brain and nerves) for further investigation.

http://www.nhs.uk/conditions/eyelid-....aspx#blinking

This page also suggests other treatments such as physiotherapy:

http://www.nhs.uk/Conditions/Dystoni...Treatment.aspx

[Klee]

What is that?

[Jahcpa]

I also have severe Blepharospasm. It took me awhile to get diagnosed. Once I began receiving botox injections, I got my life back. It's not perfect - driving and walking are still challenges. But I can live a fairly normal life. I consider it a miracle. I see a neuro-ophthalmologist. Most doctors are not experienced in the botox injections.

[ltree]

Would it be worth seeing a neurologist in addition to an eye doctor if there is a motor neuron involvement for the spasms?


Here's some UK NHS info on blepharospasm:



http://www.nhs.uk/conditions/eyelid-....aspx#blinking

This page also suggests other treatments such as physiotherapy:

http://www.nhs.uk/Conditions/Dystoni...Treatment.aspx

Yes, certainly it would be useful to see a neurologist.. In fact, I have seen one already who specalizes in Botox for eyes but who does not seem to know enough about dry eyes and he refused to treat me. I am now waiting for a first appointment to yet another neurologist who hopefully would have the expertise.

The medicine that opthalmologist #3 prescribed seemed to work only for a tiny bit in the beginning, and it does not work anymore.

From all the info I have read so far, Botox would be the best option available, so I am still hunting down a practitioner who would be able to do that. The wait time and availability of expertise over here (Canada) is dismal, and I am functionally partially blind meanwhile.

I suppose the lesson for other DES sufferers out here is that, do NOT lose time being compliant to only one or two opthalmologists dealing with the issue, if it does not feel right. I did that, only to learn 3-4 months later from other sources that I could have had done better (punctual plugs, sclerals) without the harsh eyedrops (steroids, preservatives etc.). They never told me, even though at every single visit I asked them what other things I can possibly do to get my eyes better. To them, the only way is medicated drops: Try drop #1, then drop #2, then drop #3 and so on.

By now, the blepharaospasm has gone a lot worse and who knows, it could have been a lot better :-(

[farmgirl]

HI Itree:

I know that this is going to sound far out, but have you considered seeing a GOOD hypnotist about controlling the spasms. Before you go wha-a-a-t! hear me out.

Years ago, 10 to be exact, I had a very bizarre movement disorder that the neurologists wouldn't give me a diagnosis for because the disorder is so rare but I knew, from my own research, what it was. If I was touched in stage 1 or 2 sleep I would get this huge shot of adrenaline and then I would whip into a ballistic seizure. I could see, I could hear, I knew exactly where I was and what was happening but I couldn't stop it. If I was pinned the movement would stop immediately. The movements were at times so violent that I injured myself, as in a torn disc and torn muscles off the end of my clavicle (collar bone). From the time it manifested itself until the the time it left which was 3 years, there were no exceptions, if I was touched, I would react. Basically the following sums it up:

Paroxysmal Hypnogenic Dyskinesia (PHD) is characterized by attacks of dystonia, chorea, or ballism during non-REM sleep. These attacks may occur between five times a night to five times a year and usually last between thirty to forty-five seconds. The attacks may also sometimes occur during the day. PHD is probably a broad condition consisting of a several different types of episodes and symptoms. Most cases of PHD are currently classified as a form of frontal lobe epilepsy.

Treatment
There is no cure for dystonia or PD at this time, but treatments are available. These treatments aim to reduce muscle spasms, pain, and disturbed posture and function.

The current poor understanding of the pathophysiology and biochemistry of PD often makes establishing a satisfactory treatment plan difficult. Treatment needs to be tailored to the individual, and it may be necessary to try several options before symptoms are diminished or alleviated. Patience on the part of both physician and patient is important.

In the end I thought, if they can't tell me what is causing this, as in if there are no abnormalities present in my brain, then I can control it. To that end I went to see a hypnotist. The first one I saw did not know how to approach the problem so she consulted the hypnosis society and recommended another practitioner. That woman was AMAZING. In 6 sessions she got rid of it, including rewiring my brain. When I finished she said it would never come back, that was almost 11 years ago.

If you want to discuss this further PM (private message) me and we can talk on the phone....Cheers....F/G

[ltree]

HI Itree:

I know that this is going to sound far out, but have you considered seeing a GOOD hypnotist about controlling the spasms. Before you go wha-a-a-t! hear me out.

In the end I thought, if they can't tell me what is causing this, as in if there are no abnormalities present in my brain, then I can control it. To that end I went to see a hypnotist. The first one I saw did not know how to approach the problem so she consulted the hypnosis society and recommended another practitioner. That woman was AMAZING. In 6 sessions she got rid of it, including rewiring my brain. When I finished she said it would never come back, that was almost 11 years ago.

If you want to discuss this further PM (private message) me and we can talk on the phone....Cheers....F/G

Hello farmgirl,

That is amazing, and wise of you to have considered going that route. Thanks for sharing this personal experience.

Actually gleaning from the online communities so far on blepharospasm (which is nowhere as established as DEZ here:-), second to Botox which is the first line of treatment, behaviour therapy is the second one. That, to me, would be not out of line with hypnotherapy.

It is wonderful you located a hypnotist who can fix such a condition. I feel I am one of those people who cannot get hynotized but at this point, after seeing some 10+ speialists who could not help much, anything is fair game.

Let me think about this a bit :-)

[farmgirl]

Hi Itree: Au contrare, I think you can be hypnotized because according to my hypnotist the only people who cannot be hypnotized are severely mentally deficient so I am thinking that doesn't describe you....lol