Dan has now had 6 nocturnal seizures. We will see the neurologist soon so maybe we can get some answers. I just hope the neurologist understands UV.
We have noticed a pattern emerging. Dan often has a headache before the nocturnal seizure and we think they must happen when he is in a deep sleep as he says he has vivid dreams at the time. He is still semi conscious when they happen but unable to stop it.
He has felt itchy recently but I really do think the Imuran, Plaquenil and antihistamines help. Dan is still off of the steroids for now although he did have a quick taper down a week or so ago as the UV was causing reflux again. Barts Hospital, London, confirmed a while back that the swelling caused by UV happens to his internal organs as well, hence the reflux when the muscle involved is swollen and unable to work properly. A quick blast of steroids did seem to stop this from developing further. He is still having aching muscles. His lungs are also quite bad at the moment and he relies heavily on the steroid inhaler and the Ventolin inhaler.
My Father passed away this week so it has been a very stressful time for all of us. Dan has taken this badly but his UV has not changed so I am pretty sure it is not stress related.
Every time we think things are settling there is something new. I have heard of other UV sufferers having some kind of seizures but this illness seems to manifest itself in so many ways and we are all different.
I will update again once we have seen the neurologist.
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