Seizures

[Simmonds797]

Hi my husband has Cerebral Vasculitis, diagnosed in 2013. He has experienced his second tonic clonic seizure in the last 8 months. He is still on azathioprine due to his seizures, so that will be nearly 5 years in September. Has anyone else experienced seizures who have cerebral vasculitis? Any information would be greatly received.

[Atkins2014]

Hi Simmonds797. I am a carer for my Sister who was diagnosed with cerebral vasculitis in February 2013. She started off with what I can only describe as the most extreme and horrific headaches. After admission to our local hospital where even morphine was having no effect on the pain, she was transferred to The Walton Centre in Liverpool. By this time she was having seizures and had also had multiple TIA or mini strokes. She was in hospital for 2 months and even had to learn to drink from a cup again as it had badly affected her left side. Lasting affects were personality changes, memory problems, confusion and issues with concentration. It has also affected her mobility, but gradually, and after a course of IV Cyclophosphamide plus multiple medications on a daily basis, she has recovered somewhat.

She had a flare up again about 8 months later and was given another course of Cyclophosphamide plus daily in tablet form. She was then put on Azathioprine as well as high dose steroids and Oxcarbazepine for the seizures also.

Thankfully, she seems to have levelled out with the Azathioprine and the remainder of the long list of medications she has now and the steroids, Prednisolone are being tapered down gradually. Azathioprine seems to have worked for her along with the combination of medications she takes now.

The whole family struggled with the diagnosis at first as well as finding out very quickly that it is very rare and little people have heard if it let alone know anything about it.

Addenbrookes Hospital in Cambridge have an excellent reputation for cerebral vasculitis but Liverpool's The Walton Centre have been amazing with my Sister as we live near Chester. Also, You May have already seen Viv Dunstan and her many posts concerning cerebral vasculitis. I have had a lot of information and advice from Viv.

Good Luck.

[Simmonds797 in reply to Atkins2014]

Thank you so much for your reply. I am sorry to hear about your sister. We are in Oxford, and we have received incredible care, I think my husband had very similar symptoms, with extremely high blood pressure when admitted. He was put straight into a coma for two weeks. They put him on high level steroids and a course of Cyclophosphamide straight away, and has been Azathioprine for 5 years in September. They are querying about taking him off those as he is now experiencing these seizures.

I haven't seen any of Viv's posts but will now look them out. I'm finding that seizures are quite hard to deal with in terms of what I should do and what my husband should and shouldn't be doing. We are waiting for an MRI which I think is in two weeks, which hopefully will clarify that the vasculitis is still in remission.

Good luck to you all.

[John_Mills Volunteer in reply to Simmonds797]

This is Viv’s personal Story from the VUK website if it helps vasculitis.org.uk/living-wi...

[Simmonds797]

Thanks John.