Any of you with cerebral vasculitis have difficulty with your emotions? On a bad day-crying and agitated. On a good day I'm fine.

[cruznlcsw]

Also sleep a lot, and I am an early riser, but on a bad day I can't seem to wake up.

[vivdunstan Volunteer]

Yes I have a lot of trouble with emotions. It was particularly bad in the early years - I don't know how my husband coped! But this side of things did improve when I was diagnosed properly, and after I had started immunosuppressive treatment. Though I've in the decade+ since developed general anxiety disorder - my GP says living with what I do it would be a miracle if I didn't - but 1 SSRI pill a day keeps that well in check. So I'm a happier bunny

And re the sleeping, I seem to sleep more as my disease is more active. 12 hours a day is now typical for me, but I can sleep up to 18 hours, day after day after day. The hours increase when the brain inflammation is more out of control. I just go with the flow with this. I reckon my brain is making me sleep to protect itself, and I should let it do that. Also if I try to get up too quickly I'm a zombie. Also often as though heavily sedated - like had a horse tranquiliser - and reduced consciousness, which again I'm probably best sleeping through.

[cruznlcsw in reply to vivdunstan]

Thanks so much for your thoughtful reply. I, too, sleep a lot when I am not doing well or when I have done too much the day before. When I was working it was very difficult for me, and I didn't know what was wrong. Fearful I was coming down with Alzheimer's or something even worse, I kept it too myself just how bad it really was. My doctor put me on Provigil to help with the sleepiness, but now it doesn't work as well, because I am getting worse. It certainly is hard to get doctors to see the urgency of getting help. I suppose it is because they are not going through it or have not walked a mile in our shoes. I remember when my patients would tell me that people, including doctors, just didn't get it, and they felt alone. I was so happy that they at least had me. I sure wish I had someone like me now. Maybe when I improve I can get something started in this regard. Have a wonderful weekend!

[Simmonds797]

Hi my husband has cerebral vasculitis, but sadly doesn't want to look up anything to do with it. He isn't in denial just frightened as to what he may discover. So I look at this website and am in touch with Dorothy and John Mills etc., As Richard has only had this condition since September, its difficult to pin point things, but I would say definitely he sleeps more, he doesn't go to bed until around 11 ish, but would sleep in until 10 or so, which he never did before. He gets and feels exhausted during the day especially as he and all of us have just had a tummy bug. He hasn't returned to work yet and am not sure if he will for sometime. He still has memory difficulties, but otherwise is exercising, he cycles once sometimes twice a week. He is on Azathiaprine and prednisolone daily, blood pressure and warfarin, so with the cocktail of drugs also its hardly surprising. I think exercise could be the way to go, it certainly helps Richard clear his head a bit. Hope this helps.

[Simmonds797]

Hi me again, I forgot to say that Richard has not had any emotional problems, and we are currently seeing a series of Dr's at the JR in Oxford, and they all appear quite surprised when we say that he has not had any difficulty with depression as they seem to expect that he will, so who knows maybe its to come, we are still early days.

[Georgiana]

Hello. I have cerebral vasculitis, diagnosed in 2010 , I had the usual treatment of cyclophosphamide pulses, and prednisolone, followed by Methotrexate 15mgs and prednisolone . OK for 3yrs. But as my prednisolone reduced during 2013 I began to suffer increasing pains, mild depression, anxiety, and exhaustion, I thought I was sufferering from steroid withdrawal symptoms, but at my regular check up with the rheumatologist he said it was the vasculitis returning , and increased my Methotrexate to 20mgs and prednisilone to 15mgs on a reducing regime of 1mg a month, I felt much better after 48hours with the pains gradually reducing , I am now down to 9mgs, unfortunately I am also hypothyroid ,on125mcg thyroxine since 1992, with no problems,but my last T SH showed I was over medicated so I was advised to reduce the thyroxine to 100mcg, I have also just had some ? Virus which caused dreadful headaches,and neck pains plus slight temp rise and exhaustion, lasted two days, now seem to have recovered as feel more myself, I hope this continues, the trouble is you never know which disease is causing the problems ? Georgiana.

[Georgiana in reply to Georgiana]

I forgot to say ,I don't have trouble with excessive sleeping, in fact during the three years after diagnosis, I slept very little ,lucky if I had 2-3 hours a night , possibly because of the high dose of steroids I was on. I now sleep around 5-6 hours. I also forgot to say I suffered a pulmonary embolism at the beginning of 2011. I take 75mgs of aspirin as a preventative (I had Tinzeparin and Warfarin, for 6months after the embolism).

[ShortSarah]

I'll be honest, I'm feeling very low at the mo. I also have CNSV and found out over the last couple of weeks that I have brain damage and heart damage (my aorta is "over stretched") from the Vasculitis and this has hit me hard. This teemed with Pred (which can affect your moods too) and being told if I want children I would be 'high risk' it's just been a bit of a shitter and I find myself crying a lot!

On top of this, I also am a teacher and my anxiety and depressed feelings lead me to dwell on if I have time off I am letting my students down -letting my colleagues down - letting everyone down!

My husband is a great help but I find myself worrying and feeling down that he has to worry about me. And then I worry about the pain my illness has caused to my friends and family... I worry a lot!

Personally, I give counselling a lot of weight in helping me - when I was first diagnosed I went and I felt it helped me deal with the initial impact. Now I am waiting to go back so I can start to deal with the aftermath of being poorly and come to terms with the person I am now - which seems a million miles away from who I was.

These sites (incl. Facebook) help loads too - for help, advice or just to rant in a cathartic way (which I am currently doing!) When I'm feeling low it's a lot easier to write stuff down than say it or I'll just cry! This way I can pour my heart out without feeling judged or having to deal with the tilted head look of pity... you probably all know the look!

Anyway, my point is this: we've all had a lot to deal with -

We still all have a lot to deal with - and we should and will feel low sometimes. But we cannot let that feeling consume us and we should do whatever it is to try and have more positive days than negative. And remember that this site gives us a chance to help each other when needed. Rant away - as I have - if it will help.

As that has helped me. Thank you.

I might go clean something now - that cheers me up aswell (odd I know - maybe I'm OCD too!)

[jackrussell]

Hi there just a small addition to all that has been said, I always feel emotional when on Prednisolone, I cry for no reason at all , feel very agitated ,and very misserable. I then feel worse because I don,t know what I,m crying for,so cry some more. Tally Ho ,today is a good day so just waiting for the sun to come out, best wishes to everyone.And I must say this although I,ts nothing to do with Vasculitis ,My sons friend ( 52 yrs ) 4 weeks ago had a heart transplant and he,s now been told he will be going home very shortly,wonderful news, there is always that reason to hope,the light at the end of the tunnel.

[cruznlcsw]

Hi From California,

I found out there is something called bulbar, which can cause a person to cry or laugh when they aren even sad or overly happy. It happens to people such as someone with ALS, and other disorders that affect the brain such as a stroke. When I was working in healthcare I remember some of my patients had this problem. I am wondering if those of us with cerebral vasculitis also can get bulbar.

Also, I am at my happiest when I am helping others so I have decided to start speaking. My friends tell me that my road to success would be an inspiration to others. I realized a couple of days ago that I can still help others, which makes me happy. I just have to make sure I don't get too exhausted. I have been feeling blue, and this has certainly uplifted me.

I want to thank all of you for your insight, advice, and educating me on the ins and outs of vasculitis. I am still not on medication. I do take plaquenil for Sjogren's. I, am indeed, frustrated with our healthcare system here in Santa Cruz!! If I wasn't a social worker in healthcare I don't even think I would have gotten this far. My first test for P-ANCA that was positive was in 2008. Why they waited so long to help me is beyond me, but if I can get better I plan to address this huge problem.

[RareLily]

Yes, my emotions are all over the board lately..... been losing my temper which is unusual for me.... and while it's happening it's as if I'm listening to someone else rant and rave before I get a grip on myself. However, it's probably a combination of many factors, including prednisone dosage, pain levels, the affect a chronic disease has on personal relations and finances, feeling out of control... and of course the actual damage to the brain tissue itself.