Urticarial vasculitis and nocturnal epilepsy. Connected?

11/10/13

Well, the appointment at the hospital cannot come quick enough. Dan has now had 10 or 11 seizures during the night. A couple of nights ago he had 2 in the same night. This morning, he was tired and fell asleep at 11.am. He had only just drifted off and had a seizure. Yet again his neck was jerking to the right and he felt paralised from the neck down. He said he felt like he could control his breathing but is unable to call out. He is getting quite scared now. This is 4 seizures in 1 week. The only pattern he can come up with is that he is always dreaming when the seizure wakes him which suggests it is something that is happening when he is in REM sleep. I cant think of any new meds or anything else apart from the UV that would do this. Dan has been into hospital with TIA's and had a problem with the vein bulging on his temple so somehow I just think this is connected. I dont know if it is just because dan is getting paranoid but he still says he gets head pain in just one area. I just dont know what to think.
He takes all his meds as directed and we just cannot see any other pattern to all of this.

I dont believe this is stress related. My Dad passed away on 23rd September 2013. Dan was very upset but the seizures had started in May so again cannot be connected.

The night sweats seem to have stopped at the moment but Dan has been saying he feels generally itchy and is taking a high dose of anti-histamines. he is off of steroids at the moment and is very reluctant to go back on to them.

We still have a week and a half to go until the hospital appointment then I guess we will have to wait agin for tests to be done. Nothing happens in a hurry under the UK NHS.

Mast cell disorder?

03/10/13

I put a picture up showing the hives Dan had. The red line you can see is where he had light clothing against his waist. Our consultant did a scratch test that shows that Dan's body produces too many histamines while trying to defend itself. We could gently run a finger nail over his back and literally write his name! A red line would appear within seconds. We are not sure if this reaction is part of the UV or a mast cell disorder our consultant thinks Dan has.
I am not sure if any other UV sufferers have this too?

Hives!!!

Continuing Seizures 02/10/13

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.