Cerebral Vasculitis to Vasculitis Dementia

[phil3]

I’ve had Cerebral Vasculitis which has now been in remission for 10yrs and still have memory problems but I’m becoming confused and it’s harder to organise anything things. I still have the occasional petit-mal seizure and I’m only going to out if I know I can get to a toilet quickly and that’s due to a few problems that’ve occurred.

When I went to an important event like my wife’s presentation for her Majors and I was just in the audience with many others and I became stressed which caused a seizure and that’s happened a few times when I become very stressed. I’ve become depressed and anxious so could the Cerebral Vasculitis now be Cerebral Dementia.

[Suzym2u Moderator Vasculitis UK]

This is such a difficult question to answer , I can do some digging to see if there has been research carried out on the subject, but CNSV is just so very rare, I am not sure if I will find anything. But I will try.

Try to keep strong, have you considered counselling or talking to someone about how you feel?

Susan

[vivdunstan Volunteer]

I think you need to speak to a medic about this. But the symptoms you describe could be the cerebral vasculitis itself. I'd question if it is still in remission. There are no definitive tests to prove cerebral vasculitis is in remission. Even if your bloods and MRI are fine the symptoms itself could suggest that you have an active disease process, and need stronger treatment.

I h ave lived with cerebral vasculitis for 25 years, since I was 22. For most of that time I have battled with severe urge/frequency bladder incontinence, and have had to wear pads permanently. It worsens when my disease is more active. It's my marker symptom, that shows up most starkly of all. But my blood tests are rarely a useful guide.

Also confusion is a typical symptom with cerebral vasculitis, and again something I have battled with for 25 years. Since a huge relapse in 2004 my disease has never gone back properly into remission. And dementia-like problems are something I deal with everyday.

Please see your medics about this. And I think your vasculitis consultant needs to look at your symptoms and investigate - even on symptoms alone - whether your disease is more active again, and might need increased treatment.

Good luck!

[asilanna in reply to vivdunstan]

I would try cannibis oil its brilliant for seizures. I'm so sorry you are going through this it must be very scary.

[asilanna in reply to asilanna]

Btw take up meditation so you feel more relaxed and learn how to deal when you feel stressed?

[Simmonds797]

Hi, my husband has had the same Vasculitis as you, 6 years ago. I have noticed more short term memory issues lately, along with him not being able to sleep and getting up several times in the night for the loo. He has had two tonic clonic seizures in the last two years, and is on medication. Likewise when he gets stressed which is quite often over small things, his memory gets a little worse. I think your's and my husbands symptoms are very similar, but I don't think he is getting any signs of dementia.

Might be worth seeing a psychologist, which my husband does a few times a year.

Hope this helps

[dianamarie]

Hi...always sorry to hear of others difficulties, and yet strangely reassuring that there are people out there with my very same struggles!

I was on cytoxan and high dose steroids for my collection of diagnoses, and after one year tapered off all, never to return. I constantly struggle with extreme fatigue and mental fog. Over the years I have found that certain foods perhaps are instigators. I suggest you Google foods to avoid for autoimmune diseases. I recently have discovered using protein powder drinks, they contain amino acids, vitamins and other nutrients that I think we all are lacking. After a few months of twice daily shakes,,plus I add a packet of emergenC (vitamin C drink powder mix), plus taking a multi vitamin and extra vit D,, this has helped my energy and strength levels, and general feeling of well being.

We need to constantly be aware of things we might eat or do that can cause an aggravation to our condition!... Yes, I don't like to say, 'flare up'

Good luck to all on your journey to well being! 🙂

And l also want to add, most people are dehydrated! You should drink half your body weight in ounces throughout the day. So if you weigh 100 pounds, you should drink at least 50 ounces of water, 150 pounds, 75 ounces of water! Try adding electrolytes for increasesd benefits.

And sadly, coffee dehydrates you and you need to compensate 2 cups of water for every one cup of coffee!

[phil3 in reply to dianamarie]

Its been 20yrs now and it’s symptoms but it’s only been awhile the other problems have arisen that hopefully no one else would have to go through so I shouldn’t have even made my post regarding the Dementia. You may be interested in having a look at these two sites and they have a list of systems and the problems I’m having which are on top of the symptoms of CNSVasculitis.

healthdirect.gov.au/vascula...

mayoclinic.org/diseases-con...

[PaulinemcC]

Hi , like you I suffered cerebral Vasculitis 10yrs ago & in remission, I have recently ask this question to my rheumatologist she said statistics say I am more likely to get vascular dementia how ever not proven & im a bit to young , I’m 58 , like you I’ve noticed words & spelling & one or two other things not as they were 🤷‍♀️ So on Facebook there are various adverts on dementia , I contacted one they asked a few questions would chat then keep going back to the same list I’d words then after around 10 minutes told me I scored to high to be a candidate for dementia.