Hope for severe light-sensitivity and pain

[eyecansee]

I don't have much time right now, but quickly I will tell you that I was a "bag lady" -- I was so light sensitive I had to wear a black bag over my head even though I was on 20 prescription pills (including high doses of Lyrica (300mg), Carbomezipine(600 mg), Gabapentin (2400 mg), Baclofen(40 mg), and Hydrocodone (3 times a day) a day to try to control the pain. Contact Boston Foundation for sight. I was helped through them -- Scleral lenses helped some, but new machine called scrambler therapy helped a lot - I am off all pills and no longer a "bag lady". there is better chance for success with early treatment, but i heard of patients helped also who had the disorder a long time. They will decide what treatment is right for each individual patient. These treatments are for severe light-sensitivity and pain caused by corneal neuralgia. (Actually, the scleral lens treats many disorders, the scrambler therapy treats corneal neuralgia specifically -- they used the scleral lens on me first, and then when I was still going downhill even though I had the scleral lens, they gave me scrambler treatment.) Most opthomologists have not even heard of this disorder, but the Boston Foundation for Sight knows it and treats it. When I get time, I will have to share my whole story, but for mean-time, I only have time to get out this word for whoever may be out there and may need help fast.

Because of God leading me to them
eyecansee

[eyecansee]

Additional Note

Recommend your opthomologist to read the article "Corneal Pain without Stain - Is it real?" that introduces the newly discovered disease called corneal neuralgia, if you have severe light-sensitivity and severe eye pain. Then he/she can refer you to Boston Foundation for Sight if need be.

because God lead me to the BFS
eyecansee

[david2404]

please, please do write more soon as you get a chance. I'm in a very similar place as i don't have a lot of physical signs but do experience a lot of pain around light/computers/glare so I'm very curious about this. I went back and looked at some related posts to try and understand the "scrambler".

A lot of the posts mentioned that only a few people have used or had success with this so far so any more info you have on your experience would be great- time/method/cost etc!

thx

[mylittlem]

Pain Scrambler

My experience with the Pain Scrambler is that the BFS will want you to allow about 5 days for the treatment. With me at least they had wanted to do the Scrambler 10 times over the course of the 5 days. As far as cost it is a clinical trial so my impression was that there is no cost although again I would check with BFS.

Send me a PM if you want the details of my personal experience.

[hirentherock]

it will be good if u share ur experience here...so that all can know it thanx

[Minni]

Re: SCRAMBLER etc. etc.

Due to the public nature of this forum, I'm omitting names, but I feel it should be mentioned for the sake of those like myself, to avoid surprises & disillusionment:

Upon investigating SCRAMBLER therapy via an opthamologist, he said he doesn't think it would help overall body neuropathy such as I have, which he called auto-immunity
(as if I've not been made aware of autoimmune conditions, a.k.a. "dysautonomia") a zillion times over already!
...so tell me something new, huh...

During the discussion, when I mentioned the book "Invisible Disease" by Nordstrom, and "Body Electric" by Dr.Robert Becker, wherein the latter noted internal cataracts caused by EMFs, and the former mentioned Swedish techno victims who, like myself, developed BOTH stabbing eyes, AND ALSO internal burns in other areas of the body, resulting from fluoresence, he said he doesn't read those kinds of books, rather only medical literature. He further stated, "I don't believe in that magic".

He also discounted my suspicion that my eye floater may have been caused by fluresence or by eye drops, instead attributing it to getting older. He also beat around the bush when I asked what he knew about color affecting eyes, as in Irlen syndrome. What an elitist!

...finally, after having rudely and condescendingly pumped me re: my experiences somewhat like a curious specimen under a microscope, he never did bother to answer the question that I'd originally asked him, which wasn't primarily about the Scrambler, so much as whether neuropathic eye pain (triggered by viewing fluresence) can travel to the rest of the body, manifesting as an internal skin burn on the arm [not just eyelids]. Instead, he kept aloofly rambling about the eyes and the rest of body being "separate", and about autoimmune conditions as being "too complex", then he rudely hung up on me when I asked if he could please answer the question I'd asked him about.

I imagine, if the ghost of the now-deceased Dr.Becker had been a bug in the phone lines, he might have muttered in my ear:
"separatist mindset; the usual.. just don't let it get to you, but rather self-help, since they certainly won't!"

I'd not be surprised if the above scenario is familiar to anyone who's had the misfortune to run the stealthcare gauntlet, to the extent which I have.

BTW, at this stage of the game, I have been "self-helping".

On my to-do list:

* I'm considering acquiring a LED projector (either Pico, or else LG's HS-201), since projectors have been helping others like me.. I'm investigating the how's & wherefore's of setting it up in my cramped, old-fashioned house, as well as price, yada yada..

* Kaiman lady's swim goggles

* hyaluronic acid and/or eggshell membrane (various forms, either high/low molecular, liquid, caps, tabs, Biocell, Injuv..

* raw honey (maybe manuka, not sure which/or/wherefrom

* low acid coffee

[hirentherock]

Well its sad to hear how u had been treated for ur queries.
Im always least hopeful(least = verymuch least) that my doctor would be able to answer what i just saw on internet.
I come from India's non popular city where i dont expect doctors to be as informative as we read things on net.

Im not with the doctors but i would think, why a doctor would read such books? they r interested in making money more than doing a research.I visited Asia's largest eye hospital located in Chennai, India a 2 years back.I have the same problem of severe photophibia and SJS eyes.
They didnt know about IPL/Any other therapy.They just suggested me AMT for 1 eye and got it operated.

Now after 2 years, again eyes is coming to the previous state.

Im really getting down n down by the pain and discomfirt and social life affected by the decease.I look the most odd in public with uncontrolled eye blicnk and sleepy looking eyes.and in sun(bright/light) im the only one wearing sunglasses.That too a very dark one.

May god help me getting out of this soon.
Wish u good luck too.
I didnt get what will u do with the lcd projector?

[fellowresearcher]

I had photo sensitivity

I was sensitive to light too, Especially when I had dry eyes.

I noticed something wierd one day though that it dissappeared when I used genteal gel before I went outside

I think in my case for people who suffer with severe dry eyes...the eye becomes sensitive to light from lack of vitamins from no lubrication and over use of sunglasses.

I think when I coated my eye with the genteal gel when it had the artificial tear film over it I was surprised there was no pain.

I dont know about your case, but I honestly believe my photo sensitivity was caused by dry eye/blepharitis/mgd.

Let me know what you come up with on this

[eyecansee]

Details of my Scrambler therapy

please, please do write more soon as you get a chance. I'm in a very similar place as i don't have a lot of physical signs but do experience a lot of pain around light/computers/glare so I'm very curious about this. I went back and looked at some related posts to try and understand the "scrambler".

A lot of the posts mentioned that only a few people have used or had success with this so far so any more info you have on your experience would be great- time/method/cost etc!

thx

Dear David2404 (and everyone else who might want to investigate Scrambler Therapy for themselves or a loved one) ,

I am sorry I have not looked back at this site until now. It is true that I was not only totally disabled by my condition, but I was headed for eventual death from the side effects of my ever increasing doses of medicines in order to control the pain from lights and air drafts. Now I am living a normal life and free from drugs!

Corneal neuralgia is a disease that the cornea does not show any reason for the severe light sensitivity, because the regular examination by the ophthomologist cannot see the nerve damage. The article I referred to, "Corneal Pain without Stain -- Is it real?" gives the signs and symptoms for the ophthomologist to recognize this newly discovered disorder (tell your ophthomologist about it, or print a copy of it for your opthomologist -- just type the article name in internet search engine. Before I went for my first Scrambler treatment only months ago, my friend could only find one short article on Scrambler Therapy on the internet. Now there is a lot of information available under the names "Calmare Pain Therapy" and the common name "Scrambler Therapy." Here is a little bit of information about the therapy that is from the internet:

"Calmare has successfully treated over 3,000 patients in the U.S. and Europe, where it has been shown to be effective in treating neuropathic and oncologic pain. Conditions treated include:

* All types of cancer
* Phantom Limb Syndrome
* Sciatica
* Post-surgical neuropathic pain
* Back pain
* Shingles


Calmare was developed by Professor Giuseppe Marineo, a researcher and bioengineer and the founder and manager of Delta Research & Development. Delta R&D is the Bioengineering Research Centre affiliated with Tor Vergata University of Rome, Italy. "

I noticed that there are an increasing number of centers using this therapy in the USA, Europe and Asia. I was the first "experiment" with corneal neuralgia to have received this therapy only months ago, and at the time that they tried this on me, I was so desperate that I would have tried it even if they had said there was less than a 1% chance of success and even if it had taken all my money. I started with a series of 5 treatments over 5 days, and saw no difference until after the 4th treatment, and that was only a very small difference. But I continued to improve until 2 months later I had improved dramaticly. After 2 months, I had another scrambler therapy, and more improvement. After 2 more months I had another scrambler therapy and some more improvement. Now my condition seems to be rather stable.

Concerning price, you would have to ask each center what the cost is, because it does vary with each place. Even when I was receiving the therapy as an experiment, I gladly paid a certain fee.

May you find the relief you need. That is why I wanted my story to be available for others, that all those who need it might find relief from pain and regain the ability to live and work.

Because God lead the way for me,
eyecansee
May God lead each of you also to the help each of you needs

[eyecansee]

By the way

By the way, each scrambler session is 30 -45 minutes.

[Minni]

In response to above questioner from India:

Several people got relief from using projectors to project their computer images onto the wall, since projected light is more tolerable to view than direct light.

But it's not just that, there's other factors in computer viewing:

Color (see Irlen Syndrome site)
UV radiation
RF radiation

See this EXCELLENT research article including graphs:
http://www.hese-project.org/hese-uk/..._scenihr08.pdf

[david2404]

Anyone else investigated or had treatment with the Scrambler mentioned below? I'm very curious to know any success stories or otherwise.

I exchanged some emails with BSF and submitted some doctors reports but haven't heard much back since. From the info they sent me you need to go through scleral fitting first. They told me "BFS does offer financial assistance to those who qualify" but unless you have health insurance which will cover you in US "The fitting for the Prose Treatment Model costs $8105.00"