Calling Hannah

Hi Hannah,

I posted a message on the board a few weeks ago and you were kind enough to answer in detail.
Like yourself, i suffer from mav with photophobia. We discussed the problem of photo phobia and it’s awful consequences, fortunately you seem to have some type of solution- a mixture of meds and contact lenses.

It’s the contact lenses i’m interested in asking you. You said they had been helpful and you, very kindly asked if i would like the contact number of the suppliers. At the time i declined because i had a forthcoming appointment at the opthalmologist and would ask him what he thought.

Anyway i have now had the appointment (yet another in a long list ) which basically confirmed nothing that i didn’t already know !But as far as management of the photophobia, he suggested the lenses could be worth a try. Apparantly it works for some and others it doesn’t.

So i haven’t anything to lose and will give them a go. I’ m quite positive that they will have some benefits, because lately i have been wearing sunglasses ,the wraparound type (trying to pretend i am sporty) which have helped.
Therefore i would really appreciate if you could give me the name of the suppliers or even better the contact number, any informatiom would be helpful.

Just a quick update (wont bore you too much) on my condition. I have now finished the ami. - awful. Dr Davies suggests i try propananol next so i will give that a go. I’ve perservered with the caw. cooksey ex. and now wear sunglasses most of the time, both have enabled me to get out a little more so things are a little better. I actually spent an hour in the sun yesterday ! Which i needed because i looked like a ghost.

I hope you are still doing well and your luck continues, it’s great to hear inspiring stories like yours
Again i would be grateful for any information.
ps. I have blue eyes, would this pose a problem regards colour matches.
Thanks,Joe

Hello there,

I am happy to get the information. I don’t have it to hand as I left everything in the hands of the optician. The firm that makes them won’t sell directly to the public, you have to go to an optician. I just get them through a local branch of specsavers. I explained my situation to an optician there and he very kindly looked in to it and helped me find a company that would do it. He then ordered them and I simply picked them up. They last a year and cost about £160 - not cheap but I was desperate and have bought then 2 yrs running they have helped so much. I’m sure if you went to an optician and provided the information there would be no problem. I live near the optician so will pop in and get the info for you in the next few days. I would phone him but have tried this before and he’s generally not available as he’s seeing clients and the people on the reception desk don’t have a clue what I’m talking about.

I don’t know about the blue eyes situation. I am brown eyed and simply went for the darkest tint possible in brown. You have probably done your research and seen this article, entitled - Red Lenses relieve Migraine (see below) but the reason I chose the darkest tint of brown was partly because it was near to red and also because of my eye colour. Although the below article states that the lens colour used was partly guess work and another colour could prove even more effective. Who knows, maybe very dark blue would be even better. Possibly one to discuss with the optician. Alternatively you could just use brown. My brown ones make my eyes look amber - they look a little strange but not unpleasant, but they help me so much I don’t care.

This is the article.

Thirty-three patients with a history of migraines associated with photophobia were given specially made red-tinted contact lenses to insert during acute attacks. Thirty-one patients experienced rapid pain relief, of whom 26 had complete relief. For most patients, improvement began within 5 minutes, and pain relief was maximal within 90 minutes. In 5 cases, complete relief of pain occurred within 10 seconds of inserting the lenses. The contact lenses used were dark red and blocked 90% of wavelengths of 600 nm or less, while admitting 90% of wavelengths of 700 nm or more.

Comment: The investigators who performed this study hypothesized that certain wavelengths of light may over-stimulate retinal receptors, resulting in the typical migraine pain that is exacerbated by light exposure. The choice of contact-lens color was based on their earlier discovery that patients with photophobia caused by cone-rod dystrophy benefited from that type of lens. Contact lenses were chosen over eyeglasses, because eyeglasses allow glare to reach the retina through the sides and from above.

There are three types of color-sensing cones in the retina that are sensitive to long, medium, and short wavelengths of light, respectively. The lenses used in this study blocked the medium and short wavelengths, allowing selective stimulation of the long-wavelength cones. It is possible that certain wavelengths stimulate migraine pain, whereas other wavelengths inhibit it. Being in total darkness is known to provide some degree of pain relief for migraine sufferers, but selectively blocking specific wavelengths appears to be even more effective.

The investigators, Dr. Richard L. Garrison and Kathleen Saathoff of San Jacinto Methodist Hospital in Baytown, Texas, acknowledge that the lens color chosen for this study may not be optimal; tints that filter different wavelengths may turn out to be even more effective.

Mahoney D. Red contact lenses help relieve acute migraine. Fam Pract News 2004 (December 1):59.

COPYRIGHT 2005 The Townsend Letter Group
COPYRIGHT 2005 Gale Group

I am fairly certain that if the wrap around shades help you then the contact lenses will help you even more. I usually wear both. I think I said before my shades are the darkest black possible and are also polarised to stop glare. Yesterday I had forgotten to wash my lenses in their special seven day solution, so had to go out in the sun without them. Having been in Thailand wearing them all the time and able to go in the sun with little problem, yesterday, in London, I suffered without them and got dizzy. It reminded me how much they help me.

H

Well that doesn’t sound too painful, it sounds a lot simpler than i thought. The cost doesn’t bother me,it’s small price to pay even if it only partially helps. Ironically, i have never been to an optician, my eyesight has always been ok .I 'll try and get into the opticians on Monday after ringing several beforehand.
I think that was the original article i read, it was that that alerted me to the possibilty of lenses. Great minds think alike. Thanks for the info. If you can speak to your optician that would be great but if it proves too much hassle ,i understand.
I will let you know what happens anyway later in the week.
Cheers Joe.

Hello Joe,

Good news. I have the info for you. I just tried phoning my optician which is open today but found out he isn’t in till Tuesday. Then realised I’m an idiot as someone asked me for the info on the lenses before and I asked him for it then. Looked through my old posts on here and found it.

The company that makes them is called Ultra Vision. Obviously many companies do those lenses that people use for aesthetic reasons to change eye colour, which are useless for photophobia as they don’t tint over the pupil. I remember my optician had to do some research to find this type that tint all the way across the pupil. I get my lenses in the darkest tint available, which is a 77% tint. The colour I chose is chestnut (that’s the name they use) for the reasons I mentioned. My optician didn’t have any specialist knowledge re the lenses, it was simply guesswork on my and his part that I should choose brown and the darkest tint possible. I’m guessing there will be no problem making them without a prescription if you don’t need contact lenses in general.

Bear in mind that they are totally bearable but not hugely comfortable as they are quite thick. Then again, if you have never worn contacts you won’t know the difference, but soft daily disposable lenses worn simply to correct vision are much more comfortable. My vision does sometimes feel a bit blurred in them, but frankly it makes the difference between going out in the sun or staying in so I am happy to put up with all of this. I think the huge difference they make for me is that shades, even wrap arounds, let light in at the sides, whereas this is like wearing sunglasses on your eyeballs.

Pretty much any optician should be able to measure you up for contact lenses and get these ordered in for you. I think they usually take three weeks, however I think I got mine in less time last time as I was going on holiday and i think they can ask them to do it more quickly if it’s urgent.

Let me know how it all goes,

H