A bit of good news. Dan's brain scan and ECG came back OK. They still have no idea what is causing the nocturnal seizures. But then, they don't seem to know much about Vasculitis in this department.
Anyway, he feels a lot happier now. He is still very thin so the next thing to do in the New Year is to re-test for the thyroid.
Hoping 2014 will be a better year for everybody.
Wednesday, 25 December 2013
Another huge nocturnal seizure!
So much for the neurologist saying all is ok. I know the scan and the EEG came back clear but Dan had a huge episode during the night (Christmas Eve 2013). Considering the neurologist did not seem to know much at all about Vasculitis I don't feel so reassured today. Something is causing this to happen. Dan was really scared as it lasted so long. He was semi-conscious again but unable to call out or do anything to stop the body jerking and neck twisting.
I do feel that even our immunologist is a little out of her depth. She has told us she is not an expert and she will seek help when needed so I think we will have to try and look into this further.
Maybe I am just over protective but I just have a niggling feeling this is more than "sleep disturbance".
Wishing everybody a Happy Christmas and healthy New Year.
I do feel that even our immunologist is a little out of her depth. She has told us she is not an expert and she will seek help when needed so I think we will have to try and look into this further.
Maybe I am just over protective but I just have a niggling feeling this is more than "sleep disturbance".
Wishing everybody a Happy Christmas and healthy New Year.
Thursday, 5 December 2013
Waiting for brain scan results.
Dan has now had an EEG and an MRI brain scan with dye.
For some unknown reason the seizures have, at the moment, stopped. This is good news but of course it means Dan has had the tests done at a time when things have settled. We go to the neurologist on Monday 16th December for results. In a way I hope they show something just so we know what we are dealing with. This cannot have happened for no reason?
Although the neurologist is based in the same hospital as Dan's Vasculitis doctor he did not even know what vasculitis was let alone the effect on the brain. His clinic was next door to the normal clinic but he did not even know what med's Dan is taking. We shall see.
In the meantime, Dan's GP called to say he has to go and have further blood tests in January as there is something not right with the thyroid results. Dan is losing weight at the moment and has patchy hair loss and is still generally unwell. I don't know how he will take it if he has to take even more medication.
he seems to be coping OK with the Imuran etc so I am hoping things settle. He has had some rashes break out but the night sweats have stopped and his lungs seem clearer. The immunologist has asked Dan to see a dentist as he should have regular hygienist appointments as apparently it is easy to get gum infections that can cause problems. Dan looks after his teeth well so it is just a precaution.
It will be good to get the results out of the way.
I will post again after the 16th.
For some unknown reason the seizures have, at the moment, stopped. This is good news but of course it means Dan has had the tests done at a time when things have settled. We go to the neurologist on Monday 16th December for results. In a way I hope they show something just so we know what we are dealing with. This cannot have happened for no reason?
Although the neurologist is based in the same hospital as Dan's Vasculitis doctor he did not even know what vasculitis was let alone the effect on the brain. His clinic was next door to the normal clinic but he did not even know what med's Dan is taking. We shall see.
In the meantime, Dan's GP called to say he has to go and have further blood tests in January as there is something not right with the thyroid results. Dan is losing weight at the moment and has patchy hair loss and is still generally unwell. I don't know how he will take it if he has to take even more medication.
he seems to be coping OK with the Imuran etc so I am hoping things settle. He has had some rashes break out but the night sweats have stopped and his lungs seem clearer. The immunologist has asked Dan to see a dentist as he should have regular hygienist appointments as apparently it is easy to get gum infections that can cause problems. Dan looks after his teeth well so it is just a precaution.
It will be good to get the results out of the way.
I will post again after the 16th.
Friday, 11 October 2013
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.
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.
Thursday, 3 October 2013
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?
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?
Wednesday, 2 October 2013
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.
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.
Monday, 2 September 2013
Nocturnal Focal Frontal Lobe Seizures.
2/09/13
Well, apart from night sweats and the odd incident of numb tongue I thought things were improving for Dan. He has managed to wean off of the steroids and compared to previous years doing well.
Over the last 3 months however, Dan has twice had what we believe to be some sort of nocturnal seizure. He remained semi-conscious (scary) and Hilary wanted to wait to see if this was a one off thing before this was taken further.
Last night, well, early this morning, Dan had a much more drastic seizure. As before his neck kept jerking to the right, he was paralised and had blurry vision. This time he felt it was affecting his breathing and he tried to shout for help about 8 times but the sound would not come out. As soon as it was over he felt sick.
We have just got back from the GP who has made an urgent referral to a neurologist as he believes this is Focal (partial) Frontal Lobe Epilepsy. Dan is really upset and still in shock after the incident. The GP believes Vasculitis could be the culprit.
This is now the third event and we have realized that each one was preceded by a headache. He has also been having the numb tongue again as well. Dan is now saying he is scared to sleep as he cannot cope with this happening again. I hope the neurologist will be able to do something.
Well, apart from night sweats and the odd incident of numb tongue I thought things were improving for Dan. He has managed to wean off of the steroids and compared to previous years doing well.
Over the last 3 months however, Dan has twice had what we believe to be some sort of nocturnal seizure. He remained semi-conscious (scary) and Hilary wanted to wait to see if this was a one off thing before this was taken further.
Last night, well, early this morning, Dan had a much more drastic seizure. As before his neck kept jerking to the right, he was paralised and had blurry vision. This time he felt it was affecting his breathing and he tried to shout for help about 8 times but the sound would not come out. As soon as it was over he felt sick.
We have just got back from the GP who has made an urgent referral to a neurologist as he believes this is Focal (partial) Frontal Lobe Epilepsy. Dan is really upset and still in shock after the incident. The GP believes Vasculitis could be the culprit.
This is now the third event and we have realized that each one was preceded by a headache. He has also been having the numb tongue again as well. Dan is now saying he is scared to sleep as he cannot cope with this happening again. I hope the neurologist will be able to do something.
Saturday, 29 June 2013
29th June 2013
Well, the pollen count has risen and Dan is not feeling too good. He has been complaining of strange sensations in his head and for the last few days he has felt nausea. He also has a chesty cough. He is still free from any rash which is a good sign. I am convinced the Imuran and the new hay fever spray, Avamys, is working well.
Wednesday, 26 June 2013
June 2013. Pollen Problems
Although Dan is using antihistamines daily, Avymays Spray for hayfever and steroid inhalers, he is now getting real breathing problems. He sounds like a person having an asthma attack but we know it is a severe reaction to pollen. Dan is having sharp pains in his right lung which are so painful they cause him to sweat. All we can do is use the Ventolin Spray and carry on as best we can.
Wednesday, 12 June 2013
12th June 2013
Well, the pollen is kicking off and so is Dan's condition. Hilary thinks the pollen issue is due to a mast cell disorder connected to the Urticarial Vasculitis. Dan was complaining of wheezing and chest pain during the evening of the 11th, although he is fully dosed up on anti-histamines and sprays etc. His left arm felt like he was getting electric shocks. The UK pollen count is due to remain at Moderate for the next few days so I will continue updating.
Tuesday, 11 June 2013
Monday, 10 June 2013
June 2013.
June 9th 2013
Here we go again. The pollen has arrived along with the problems.
Dan has started night sweats, swellings, numb tongue and an apparent night partial seizure. Dan was aware it was happening as his neck twisted and jerked to the right but he was unable to move. Earlier that evening he had a swelling over his left eyebrow.
Dan reported that although it sounds weird, when he went to bed he felt a sort of buzzing in his head. We will have to watch and wait to see how this progresses. Dan is on 2 steroids at the moment and has just started a new type of steroid inhaler to replace the Seratide.
Dan also has a swelling on his inner wrist again. The weather here is cold for June so at least I know the night sweats etc are connected to the pollen count rather than heat.
The Imuran and Plaquenil seem to have controlled everything over the winter but it seems we are about to enter a new phase.
Here we go again. The pollen has arrived along with the problems.
Dan has started night sweats, swellings, numb tongue and an apparent night partial seizure. Dan was aware it was happening as his neck twisted and jerked to the right but he was unable to move. Earlier that evening he had a swelling over his left eyebrow.
Dan reported that although it sounds weird, when he went to bed he felt a sort of buzzing in his head. We will have to watch and wait to see how this progresses. Dan is on 2 steroids at the moment and has just started a new type of steroid inhaler to replace the Seratide.
Dan also has a swelling on his inner wrist again. The weather here is cold for June so at least I know the night sweats etc are connected to the pollen count rather than heat.
The Imuran and Plaquenil seem to have controlled everything over the winter but it seems we are about to enter a new phase.
Sunday, 3 February 2013
February 2013
It seems at last we have turned a corner. The Imuran seems to be working well. The vomiting has stopped and although Dan does not have much appetite it seems like this flare is subsiding.
There have been no more TIA's and although Dan still gets occasional chest pains things have improved so much. He does not cry out in pain anymore so I believe the chest pains he does have are less severe.
I hope and pray this improvement remains. I am just dreading pollen season as in the past this tends to kick things off again. Hilary believes there is Mast Cell involvement in Dan's case which causes the overproduction of histamines. This in turn has usually flared the UV.
Dan is still booked to have monthly appointments with Hilary until June 2013. By then we would be into pollen season so we will see where we go from there.
For now, this phase seems to be over. I will write again with updates but hope an pray that we will never have to go through everything I have written about in this Blog again.
It seems at last we have turned a corner. The Imuran seems to be working well. The vomiting has stopped and although Dan does not have much appetite it seems like this flare is subsiding.
There have been no more TIA's and although Dan still gets occasional chest pains things have improved so much. He does not cry out in pain anymore so I believe the chest pains he does have are less severe.
I hope and pray this improvement remains. I am just dreading pollen season as in the past this tends to kick things off again. Hilary believes there is Mast Cell involvement in Dan's case which causes the overproduction of histamines. This in turn has usually flared the UV.
Dan is still booked to have monthly appointments with Hilary until June 2013. By then we would be into pollen season so we will see where we go from there.
For now, this phase seems to be over. I will write again with updates but hope an pray that we will never have to go through everything I have written about in this Blog again.
Sunday, 13 January 2013
13th January 2013
So far so good. Dan is now down to 3 steroids a day. This is brilliant as he has been on 4 (20mg) since last June.
The nausea and vomiting has subsided and he seems to be tolerating the Imuran now. His chest has cleared and apart from continuing stabbing chest pains and occasional sharp head pain he is doing well. He also still complains of feeling itchy all over since he dropped the steroids but not enough to be a huge problem.
I am hoping this is all due to the Imuran.
I may sound a little pessimistic but I need to know he will get through the pollen season without everything flaring up again. This time last year he was off steroids completely until pollen and Mozzie bites so I know how the seasons can make a big difference.
Overall, something seems to be working. Long may it continue.
So far so good. Dan is now down to 3 steroids a day. This is brilliant as he has been on 4 (20mg) since last June.
The nausea and vomiting has subsided and he seems to be tolerating the Imuran now. His chest has cleared and apart from continuing stabbing chest pains and occasional sharp head pain he is doing well. He also still complains of feeling itchy all over since he dropped the steroids but not enough to be a huge problem.
I am hoping this is all due to the Imuran.
I may sound a little pessimistic but I need to know he will get through the pollen season without everything flaring up again. This time last year he was off steroids completely until pollen and Mozzie bites so I know how the seasons can make a big difference.
Overall, something seems to be working. Long may it continue.
Wednesday, 2 January 2013
2nd January 2013
Well, we had a visit with Hilary today. Dan has finally got over the vomiting stage of the Imuran. His blood tests have come back OK too which is brilliant news.
Dan will now reduce the steroids to 3 a day instead of 4. I am a bit worried about this as in the past, if he has gone under 4 the immediately flares. I know we have to try, and that is the whole point of the Imuran, to try and reduce the steroids.
He has had severe stabbing pains around his heart tonight but maybe this would have happened on 4 steroids? He also said he felt itchy all over which usually happens if he goes below 4 steroids. Everything is trial and error and I will monitor him over the next few days. Hilary has asked for urine tests etc and will see Dan again in 4 weeks. He had a blood test today and will need another blood test in 2 weeks.
Finally he is able to eat a little bit more. He has got very thin due to the constant nausea.
I am worried about how things will go now. Last winter Dan did improve a little so I hope it is the meds helping him and not the fact that there is no pollen in the air. As usual, it is a waiting game. A very worrying one. He has not had a mini-stroke for a few weeks now so I hope that lowering the steroids does not kick things off again.
3rd January 2013
Down to 3 steroids and nothing major has flared.....yet. Dan still feels itchy and is getting the usual stabbing pains that he describes as pains in his heart. Palpitations too but this is nothing to what was happening a couple of months ago. We will just have to wait and see how tomorrow goes.
Well, we had a visit with Hilary today. Dan has finally got over the vomiting stage of the Imuran. His blood tests have come back OK too which is brilliant news.
Dan will now reduce the steroids to 3 a day instead of 4. I am a bit worried about this as in the past, if he has gone under 4 the immediately flares. I know we have to try, and that is the whole point of the Imuran, to try and reduce the steroids.
He has had severe stabbing pains around his heart tonight but maybe this would have happened on 4 steroids? He also said he felt itchy all over which usually happens if he goes below 4 steroids. Everything is trial and error and I will monitor him over the next few days. Hilary has asked for urine tests etc and will see Dan again in 4 weeks. He had a blood test today and will need another blood test in 2 weeks.
Finally he is able to eat a little bit more. He has got very thin due to the constant nausea.
I am worried about how things will go now. Last winter Dan did improve a little so I hope it is the meds helping him and not the fact that there is no pollen in the air. As usual, it is a waiting game. A very worrying one. He has not had a mini-stroke for a few weeks now so I hope that lowering the steroids does not kick things off again.
3rd January 2013
Down to 3 steroids and nothing major has flared.....yet. Dan still feels itchy and is getting the usual stabbing pains that he describes as pains in his heart. Palpitations too but this is nothing to what was happening a couple of months ago. We will just have to wait and see how tomorrow goes.
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