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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. quietjamboree

    Visual Focus Problem with extreme light sensitivity and eye flashing

    I'm reading more and more about people saying how benzos help with their symptoms. Unfortunately my husband is not on a "low dose". But it's the only thing that helps with the symptoms. He has been taking LDN for awhile now. He worked up to 4.5 mg, which he's been taking for 3 months now. Maybe...
  2. quietjamboree

    Visual Focus Problem with extreme light sensitivity and eye flashing

    Yes, exactly what he describes. An instant GI/intestinal reaction when he gets over-stimulated in any way, whether it's too much light when his eyes are sensitive, or trying to focus on something with his eyes, or even loud sounds, or talking on the phone when he's feeling sensitive. His stomach...
  3. quietjamboree

    Visual Focus Problem with extreme light sensitivity and eye flashing

    My husband's eye problems haven't really resolved. He saw an ophthalmologist and she couldn't find anything wrong with his eyes. Clonazepam/Klonopin keeps the flashing at a minimum but he's taking a pretty high dose right now in order to keep that in check. He still has photophobia and can't...
  4. quietjamboree

    Visual Focus Problem with extreme light sensitivity and eye flashing

    May I ask how much clonazepam/klonopin you took when you were taking it regularly (were you taking it every day and how much?) Some people seem to have no problem stopping and others have a terrible time. I know it's not a good idea to stop completely because of the risk of seizures so he...
  5. quietjamboree

    Visual Focus Problem with extreme light sensitivity and eye flashing

    That's really weird. A couple months after I asked if anyone had experienced anything like this, my husband started taking clonazepam and it's uncanny how much it helps his symptoms. He's still sick as hell but a lot of the eye symptoms go almost away when the clonazepam is in effect. The pain...
  6. quietjamboree

    Visual Focus Problem with extreme light sensitivity and eye flashing

    I'm posting this for my husband because he's been unable to use his eyes for the last 6 weeks. During that time he's worn a sleep mask over his eyes during the day (and sleeps in a light-proofed room at night) due to extreme light sensitivity. When he takes off his mask and tries to focus on...
  7. quietjamboree

    D-ribose and post-exertional malaise question

    CB2, the one I'm taking is from Jarrow but I haven't tried any other brands yet. It's definitely doing something but I can't compare with other brands 'cause this is the first I've tried.
  8. quietjamboree

    D-ribose and post-exertional malaise question

    Thanks Sherpa, makes sense!
  9. quietjamboree

    D-ribose and post-exertional malaise question

    I started taking d-ribose a couple days ago and have definitely noticed that I seem to have more energy, maybe similar to having extra coffee, but wondering if this will translate to being able to actually do more. In general I limit my coffee to 1 small cup in the morning, as coffee seems to...