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-   -   My pain management Doctor told me that it looks Essential Benign Blepharospasm. (http://www.healthboards.com/boards/rare-disorders/915672-my-pain-management-doctor-told-me-looks-essential-benign-blepharospasm.html)

debnz 08-25-2012 11:51 PM

My pain management Doctor told me that it looks Essential Benign Blepharospasm.
 
Hi there I a patient that suffers from PV, (idiopathic Erythrocytosis) Polycythaemia Vera, and My Pain Management Doctor, tells me that I have Fibromyalgia,I suffer from chronic Migraines, with or without Aura, that I also have Hypertension and now a non smoker smokefree for 108 days. and tells me my eye condition is Essential Benign Blepharospasm or Focal Dystonia, is this a new condition, not related to My PV? Is there anyone that could tell me, I seen a eye specialist, he did not confirm the EBB, he Just said that the back of my eye look fine, and unbelievable healthy, as for the front, he said that my problem is related to my headaches and that he would write to my doctor and that I start immediately on the eye drops, take them 3 times a day one drop in the right eye. Is there anyone that could help me out, thanks

August59 11-06-2012 11:37 PM

Re: My painmanagement DR told me that it looks Essential Benign Blepharospasm.
 
I believe a fully credited eye doctor, which I geuss is an opthamologist would be the one to go to on that. It sounds like something that would at least need to be accessed and then routinely followed up on.

debnz 11-07-2012 03:40 PM

Re: My painmanagement DR told me that it looks Essential Benign Blepharospasm.
 
[QUOTE=August59;5084894]I believe a fully credited eye doctor, which I geuss is an opthamologist would be the one to go to on that. It sounds like something that would at least need to be accessed and then routinely followed up on.[/QUOTE

Hay thanks August59, I have seen a Opthamologist now, and they believe its related to migraines that I was having not the dystonia thingee. Which is great news. thanks for your comment thro, much appreciated, nice to know that there are people that do care. thanks again.

someotherguy1 01-15-2015 04:46 PM

Re: My painmanagement DR told me that it looks Essential Benign Blepharospasm.
 
Hello,

I have no vested interest in promoting any particular products or anything of that nature. I am simply a sufferer like many others.

I have been to multiple doctors like most people with this condition. After much analysis and reading, I have found a treatment which alleviates much of the symptoms for me.

My particular subtype of blepharospasm is something along the lines of light sensitivity and migraines. I do not suffer constantly, but when I drive, read or use a computer or a smartphone for a long time, thIat's when I have problems.

I've been taking a supplement of Lutein and Zeaxanthin. It's similar to the AREDS 2 protocol that is recommended for macular degeneration. Lutein and Zeaxanthin are basically the orange-yellow pigments in the macula that shield the eyes from blue and green wavelength light. These are the most reactive wavelengths for migraineurs, people with light sensitivity, and anyone with eye trouble.

Thus far my problem has improved steadily. By treating the light sensitivity - in the way something like FL-41 tinted glasses blocks the light, but internally - my problem has diminished to a much more manageable level. The phobic aspect of having had so many bad episodes is diminishing more slowly, but is also going away.

I would not represent this as a cure-all for blepharospasm, but certainly in the cases which are related to light sensitivity, it is a great adjunct to fl-41 lenses and any other non-invasive treatments.

It is my hope that this information can be shared with any sufferers, and your organization is the best way I can think of to get this information out.


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