Discussions By Condition: Medical Stories

Adie's pupil and headaches.....

Posted In: Medical Stories 1 Replies
  • Posted By: ross-syndrome.com
  • February 15, 2011
  • 07:00 PM


Since May 2009 I experience chronic headaches, most probably caused by the fact that I have Adie's pupil.

I already have (Holmes-) Adie's Syndrome (including the missing reflexes) more than 20 years. Since May 2009 I experience more problems caused by 'damage' to the autonomic nervous system. Total package is calles Ross Syndrome.

I have reason to belief that the chronic headaches are caused by Adie's pupil. The chronic headaches sometimes show exacerbations like migraine (which can last upto two weeks....).

Medical books suggest to use pilocarpine drops to get relief.
I prefer to find a way which gives more relief and less 'side-effects'.

That's why I have tried a filter lense (special contact lense) for my Adie's pupil. It seems to take away the photofobia (which I only experience during exacerbations), but the chronic headaches still continued....

Now I will start to try to cover the whole eye.
Reason: Perhaps the chronic headaches are caused by the fact that the Adie's pupil does not react fast enough (which makes the eye get 'tired').
If the eye-patch ('plaster') will take away the chronic headaches, I will get a special contact lense that doesn't allow any light to get through.....

I like to get in contact with other people with Adie's pupil who already tried special contact lenses. There is too little information about this subject online. I like to have more information about the experiences....

I hope there are people who can help me with information.

The Netherlands (Europe) :rolleyes:

(site about these syndromes : Ross, Harlequin, Holmes-Adie and Horner's)

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1 Replies:

  • Hi Your post is about 3 years old, so I am unsure if you will get this reply or not. I have the Adie's pupil too and am suffering from this head-aches. I did try pilocarpine for a while. You can get in touch with me on saanya.jain@gmail.com and we can discuss further. Anybody else suffering from this syndrome who would like to get in touch to discuss on possible cure/solutions, please get in touch too.
    Anonymous 1 Replies
    • February 1, 2014
    • 04:07 PM
    • 0
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