CNSV

I was diagnosed with CNS ten years ago. My initial symptoms were severe headaches, neck pain, seizure and possible hemorrhage. While I was diagnosed in a relatively short time frame (2 1/2 months) and treated, my headaches continued for several years. For the last five years, I have been symptom free until two months ago. It started with smaller headaches and neck pain then a seizure, numbness on the right side of my face and now four weeks of constant headaches and nausea. Though there have been extensive white matter changes on the MRI since the previous one in 2008, there are no new lesions. There are no construction of blood vessel on angiogram as is initial. I feel just as I did the first time only less intense pain though am finding it more stressful dealing with this as an outpatient with long wait times. Does anyone have any experience of relapse or flares to share? I would be most grateful to hear your story

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  • There are a few members in the group who have been diagnosed with CNSV and have experienced relapses or flares , someone will hopefully make a reply very soon, if not I will make a few enquiries on your behalf Kat13

    best wishes

    Susan

  • Thank you Susan. I am so grateful for this site and wonder how it took me so long to find it. I have done so much research on CNS in the last few months but it is so amazing to hear first hand accounts. I think I had read every study I could have access to but what I really wanted to know was what it felt like to other people. You can read that 30% of people experienced cognitive deficits but what does that mean? I have been so longing for this kind of info. Thank you!! Katherine

  • Hi Kat13,

    I have a low grade form of CNSV which presents with similar systems to MS with headaches. (More specifically in me - pins and needles, numbness and pain in arms, legs and face, all sorts of headaches inc. migraine with aura, nausea etc., dizziness, confusion, anxiety (mostly as part of the onset of migraine ), some dyslexia type word/letter confusion and fatigue). I had a form of paralysis in my left leg after a procedure (which was probably due to stress) which recovered fairly quickly. I notice that, when I do get weakness, it tends to be on my left side.

    Personally, I have flares which build up over a period of about 6 months. It can be made worse by stress or infection. Hormonal changes also had an effect. When I need to I take Prednisolone which 'resets' me back to an even keel. Although during the last batch I took I had an extremely stressful set of events that occurred while taking them and didn't feel as good as I usually do after completing the course. (I would be interested if others have had a similar reaction).

    If you search CNSV in the search box in the top right of the screen you will see a lot of the different examples of CNSV and the people who are suffering/have suffered from it. There are a lot of very supportive people in this group on HealthUnlocked and I am sure you will soon get more feedback. If you want to ask me anything pls feel free. You can do so here or via a private message if you wish.

  • Oh and Reynaud's!

  • Hi there. Thank you for responding. The information you provided was very helpful. I have often thought that stress was in a trigger in my disease course and I got the impression that it had a big impact on your relapses. Did I understand that correctly? Also I was wondering whether ther term "low grade" was yours or whether it is used medically. I have never seen it. I guess I was just thinking that regardless of the symptoms that we may present with at any time, those symptoms change change at any time without proper treatment and the damage to our brains can be so serious. I was just wondering what the term meant. Nice to hear from you. Thank you!

  • Also is Predisolone the same as Predisone? Thanks!

  • I left out the n - Prednisolone. One is the name of the medication, one is the brand name, I believe.

  • Stress is definitely one of my triggers. 'Low grade' is the term my neurologist uses. Essentially it means mild. A term I am very grateful for! As long as the prednisolone works then I am a happy bunny. I did have to have the dose raised slightly last year but there have been no major changes on my MRI (shows T2 flares, inflammation and 'shrinkage above average for the age of the patient') so all good. :-)

  • Melon Raynaud's? In relation to CNSV? Thanks x

  • Seems so yes. My neurologist was unsurprised. As my symptoms have progressed I have developed the classic livedo pattern on my legs (and now my arms) at which point the Raynaud's got worse. My husband hates 'my dead things' (How he jokingly refers to my hands and feet.) It seems odd that they actually feel colder than the surrounding atmosphere! Weirdly my feet are often discoloured on waking (dark purple) although I don't move when I am asleep so that might explain it. When I was out in January I foolishly let myself get too cold and three of my toes tuned blue. The residual marks from that are still apparent on my feet so be warned people - keep warm!

  • Melon..Thank you. It makes total sense..and you are not wrong! Cold weather seems be generally bad to us. My hands are always cold.. yes, we need to keep warm!! :-)

  • Hi Kat,

    Sorry to hear you have not been as well lately. I was diagnosed with CNSV in 2006, i first started to be unwell at the end of 2005 with issues with sight, terrible headaches,numbness, dizziness and inability to fight off minor illnesses.For instance a basic cold would have the ability in a very short time to progress to chest infection, pneumonia, pleurisy . I was losing weight very quickly without changing diet. Major tests were called in when i had suffered 3 strokes in relative quick succession, these created cognitive issues, memory loss and i was unable follow complex instruction or prioritise. Throughout this i had constant pain in my head and would experience sudden muscle weakness.

    As i had always been very fit and ate sensibly etc i was told this had played a big part in me surviving my strokes caused by the CNSV. 18 months in i was back full time at work with the intention i was in control of the CNSV not the other way around. However i needed to factor sleep periods into my day to achieve this. I guess after a while of very little symptoms i became complacent and genuinely believed although the CNSV was always with me that it was a one off incident. For 4 years my life seen by the outside world was very much normal and i excelled at my very active job.

    Then suddenly in May 2011 i got up on a Sunday morning feeling just 'not right' i had planned to meet up with friends at our local village show , i set off to walk and reached the venue about a half mile from home. I sat down as soon as i got there, inexplicably tired,i had a cold drink. Apparently i had walked back home without staying, none of this i recall. Only immense pain in my head , neck and top of my spine, and a feeling of total confusion.

    I spent the next 3 weeks in hospital, initially with not a deal of medical direction, until my excellent GP with advice from dear 'John Mills' on this site put me in touch with Addenbrookes. I came out of my local hospital still in constant pain and returned 2 days later for another 3 weeks by then i was starting on my first structured medication regime advised by Addenbrookes.

    Looking back i realise about 1 month before my major flare despite rests i had been getting progressively more fatigued which i had naively ignored.

    Unfortunately i did not recover as quickly as in 2006 and retired on health grounds, this at least allowed me to have more control over my health and look after my fitness still my biggest ally .

    In July last year i started to notice changes again , small at first but too many to ignore. After being on a maintenance dose of Prednisolone for 4 years i reluctantly agreed to have my Pred increased again. Thank fully this was the right decision and although not well for a couple of weeks my health quickly again picked up and i avoided hospital and a major flare .

    I have noticed important triggers and this does not apply every time are, Stress... mental and physical, being overtired, general illness.

    Exercise is a must in the war against CNSV and works well for me provided i listen to my own body. Accept you will have good days and bad days.

    On a bad day i am overcome with fatigue very quickly with little warning and still get pain either in my head or spine or both. But it usual responds after several hours to a mixture of, Ibuprofen 600mg paracetamol and morphine and sleep.

    On a good day i only take my usual maintenance drugs, prednisolone etc and have on one of these occasions climbed a mountain over 3000ft. This i climbed , physically and more importantly mentally which gave me back ownership of the reins of my CNSV.

    Back on the effects of stress levels, i was bitten by a dog which made me very poorly with my CNSV for 5 weeks , trapped my hand in a car door again ill for a week.

    My son was made redundant , again impacted on my health.

    My mother sadly passed away after several weeks of very poor health, but her passing was expected and thank fully my CNSV did not raise its head. I think i had had time to come to terms with what was to happen.

    It seems stress levels you expect , your body understands but the unexpected is not so easy to deal with.

    I do know everyone is slightly different and is affected in different ways, but understanding how you personally are affected by CNSV will help a lot in your everyday well being.

    I hope this is not too long winded, and is of help to you , wishing you well.

    Jo

  • Hi Jo

    Thank you so much. Your story is actually very similar to mine (replace seizures and brain bleed) with strokes. This episode started for me (ten years later and CNSV done in my mind) with extreme fatigue. Everyday night I would be try to psych myself up for the next day of teaching. My neck and spinal pain excruciating especially at night and headaches were returning. It was not until seizure Easter weekend and the real headaches came back that the realization of CNSV returned. I had been told at that point that the further you had gone without relapse, the less likely it was. I had not seen my neurologist in 6 years and had not taken any maintenance drugs later than 2008. I have had headaches, nausea, dizziness, numbness on my right side. 3 trips to ER and a hospital stay for vascular work up and I am still not being treated. It s like I was never diagnosed or something and if they can t see active infarcts or constrictions, then I am not sick. It s not like we are cured of this illness and catch it again! I have been sick and off work for 9 weeks terrified of what s around the corner. They gave me Topiramate to control the head pain which had caused a whole new set is side effects some of which are similar to vasculitis so I am going off this scary med. I do have an appointment with probably the most knowledgeable rheumatologist in Canada for vasculitis in two weeks. it will be a long wait. Fitness for me too was huge in my recovery. I lost 40 pounds when I got sick and took my recovery very seriously. I started walking when I was able, then swimming, then rollerblading and pushed myself out even on cold winter days to walk even when I didn't feel like it. I also believe I had become more complacent about exercise, diet, rest and most importantly Stress in the last 4 years or so. My job was taking over my life and when I got home I was too tired for anything else.

  • Jo. Do you mind my asking what maintenance drugs you are on. It seems most people on this site who have had CNSV are on maintenance drugs permanently. Is that your experience? Can you tell me more about Addenbrook s structured meds? Thanks!

  • Hi Kat,

    How's things? Have you had your specialist appointment yet?

    I was not originally on maintenance drugs until my last flare in 2011. At that point i was originally put on 60mg Prednisolone, and trying to reduce , as the symptoms reduced and became more manageable.

    Over time and different attempts at reducing i finally managed to get to 5mg. Whenever i got below this it was not sustainable and unpredictable. Addenbrookes agreed 5mg was an acceptable maintenance dose. I had been successfully on this for two and half years when i noticed my fatigue increasing again , numbness and tingling in my fingers. Intermittent and severe head pain and stiffness in my spine and other problems. None major on their own but together suggestive of the CNSV raising it's head again.

    I was initially reticent at the suggestions to increase my prednisolone again after such a long time to achieve a maintenance dose.

    But the consultants call was the right one and the dose was raised short term to 20mg.

    Within 2 weeks the effects were remarkable and it was obvious then in my mind that this prompt action by the specialist had halted another flare and in doing so kept me out of hospital.

    Since that time i have been unable to get back down to 5mg, but have achieved 7.5mg which is working very well for me & again is agreeable to the specialists involved in my care.

    There is a possibility in the future that if the need arises to increase the maintenance dose above 7.5mg long term i may need to consider running mycophenolate along side of the prednisolone.

    My other meds include 600mg ibuprofen, codeine phosphate(morphine) , paracetamol. Used in a combination as and when required and dependent of level of pain.

    I also take aspirin since my strokes in 2006. This just makes the blood less sticky and hopefully means when the CNSV narrows the vessels because of the swelling the blood has more chance of continuing to flow and take the oxygen through the brain.

    I was on bi-phosphonates when i was on a high dose prednisolone, but as my last two dexa - scans (bone density) have been good. I am giving my body a rest from that. Just supplementing a healthy diet with calci-chew.

    I also take omeprazole long term to protect my stomach from the ibuprofen.

    I hope this information is helpful. Please bear in mind though that everyone is slightly different with CNSV and indeed how they react to different meds.

    The important thing is to make informed decisions with your specialist and both you and the professionals involved in your care should listen to your body and how it reacts.

    Take care

    Jo

  • Hi there. I can't tell you how helpful it is to hear your experience, your symptoms and your treatment. Thank you for responding. I am getting by some days better than others. My appointment is on Wednesday finally and I feel I am going in prepared. This doctors came to Canada from France only a few years ago so I am sure he is familiar with Addenbrooks. The numbness is getting worse and so is the weakness and pain in my legs. On Saturday night, I suddenly got Petechia on my thighs and also hives on my arms. Last night the numbness also spread to my throat which combined with the hives made me worried about an allergic response but I don t think so now. It passed. I think I was treated so early in original onset (2

  • That I didn't develop these other symptoms or perhaps that is just the nature of a flare that it does not present the same. I am hopeful that this appointment will go well and that I leave feeling secure in a treatment plan. I know that during my original treatment of predisone and cyclophosphamide, I was able to handle the side effects relatively well and I was just happy being alive with the pain under control. Thanks again for sharing your story with me. I am trying to stay calm and be positive!

  • I've been living with cerebral vasculitis for 21 years now (since age 22), though it took 3 of those years before I was diagnosed properly. I relapsed big style in 2004, and we have struggled to control it since, trying many many drugs. But I may have responded - very belatedly - to high dose Cyclophosphamide infusions in summer 2012, and am doing a bit better now. Mine is a very multiple sclerosis like case of the disease, day to day.

    My story is online at

    vasculitis.org.uk/living-wi...

    though as an update to that it's possible the Cyclophosphamide helped me more than it seemed when I wrote that piece.

  • Sorry, didn't quite give the full link to my story. It's

    vasculitis.org.uk/living-wi...

  • Also long-term extreme psychological stress was almost certainly my trigger for falling ill back in 1994. My parents, who I still lived with, were going through a very traumatic divorce, and I was living in a quite horrific situation emotional-wise, a warzone really, as I tried to complete my bachelors degree as well. I escaped from that in January 1995, but by then the damage had been done. My symptoms kicked in in September 1994. I now avoid stress like the plague. I gather research shows that stress increases immune system activity, and that may be why it can be a trigger for auto immune diseases to start or relapse.

  • I remember reading your story when I first started searching online 8 weeks and it was the first time I read a first hand account by a person with "my" disease. It was very moving and inspiring and I remember being so happy for you that you had such a wonderful husband! It has been so wonderful to me that I found this site a few days ago. I have been reading every study and medical journal but hearing from people who have actually experienced this has been an incredible support. It can be a very lonely disease. I have never spoken to anyone with it and I certainly knew that most (if not all) the doctors who have dealt wth me had never had a patient with the disease either. Thank you for responding. Your knowledge and experience is much appreciated. Katherine

  • I agree with Viv regarding extreme stress that was my trigger with cerebral vasculitis and I make sure I stay stress free as much as possible . I posted information about how I control it myself successfully . Please message me if you want anymore information . I hope you feel well soon it's a horrible condition to live with when its active . Diane x

  • Thank you Diane for your response. I have friends who also find Reike to be extremely effective at stress reduction. I had always thought that my initial onset was in some way related to stress though there was nothing mentioned about this in any of the literature in 2005. I was sleeping only about 4 hours a night (pre-menopausal), teaching full time in a high needs school and coming home to the second shift of mommy duty. I had no time to look after myself and I was constantly getting bronchitis and/or pneumonia. I don't know if others with CNS have found this but I have always thought that my capacity to deal with stress was greatly diminished after I got sick. I handled my illness well and had a positive outlook but once I went back to work, I felt stressed all the time about everything. Just having to stop at the grocery store after work created anxiety. I often felt nauseous just driving to work. I think my job became a lot harder for me. Paperwork was more challenging. I spent a lot of energy just trying to stay organized and on top of things. I internalize all my stress too. To the rest of the world I looked happy and confident but on the inside, I often felt overwhelmed. Often by the smallest thing. I have started meditation and I have to spend time outdoors walking at the beach or in the woods everyday. Photography has been a huge de stressor but I haven t been able to do that since I have been ill. Thank you for sharing what has helped you. I will do some research as I am always open to trying something new. Thanks!

  • I was diagnosed with generalized anxiety disorder 14 years after falling ill with cerebral vasculitis. I'd already figured out I had it, and was trying self management as a way of coping, but it wasn't working enough, I reached a crisis, and my husband dragged me to the GP! My GP offered me cognitive behavioural therapy, but said there was a waiting list, and would I like to try anti depressant SSRI pills in the meantime, in case they help. I was happy to try more pills - I already take loads each day ha for the vasculitis! Took us a little while to find one that didn't cause troublesome side effects, and whose dose was effective. But then I was a much happier, calmer person again. Still "me" - the pills don't change my personality - but not now anxious constantly, always on edge, worrying about everything. My GP said he thought it would have been a miracle if I hadn't developed this, living with the condition as I was. I think you should talk to your family doctor about your anxiety, because if it might be a full blown generalized anxiety order then you might need extra help to keep it manageable. I still have "moments", but my anxiety pill makes my life much easier, and that of my husband.

  • "It s like I was never diagnosed or something and if they can t see active infarcts or constrictions, then I am not sick. It s not like we are cured of this illness and catch it again! I have been sick and off work for 9 weeks terrified of what s around the corner."

    Thank you for your helpful thread, Kat13. May I just ask what you were initially diagnosed with when you had brain bleed / seizures? You say, "CNS" - sorry to be slow..you mean you were diagnosed with CNSV? If so, were you immediately classified as to which type of V if it's okay to ask this?

    I am not sure if there's a huge difference between strokes and brain bleed..in both, your brain is massively compromised - a major crisis if you like. I also had symptoms of strokes but it is lately considered to be brain bleed as I developed bleed elsewhere more recently as a result of V. Yes, I agree many of us seem to experience a similar set of symptoms!! Take care.

  • Hi there. I was in intensive care for a week an in hospital for another week. The admitting g diagnosis was subarachnoid kid hemorrhage with blood and xa thochromi in LP, the angiogram showed construction of vessels, and MRI showed multiple round foci in various part of the brain. All of the radiologist reports stated "very much in keeping with cerebral babu lotus". At this point every doctor was asked for their input. I now have records of all of this. Some said yea, some said no. So they sent me home with percocets and a working diagnosis of CV but no treatment. Two weeks later, after weeks of pain and nauseous, the neurologist on call seemed appalled that I had not been treated. They started predispose and then a new MRI showed new foci of restriction, recent areas of ischemia. They had ruled out any other cause for the vasculitis and determined it was not systemic and diagnosed Primary Central Nervous System Vasculitis and started me on 125 mg Cyclophosphamide.

  • Sorry about the crazy spelling. My fingers or this phone giving me trouble today!

  • Hi Kat13 Thank you so much. Not at all, it reads perfectly well. :-) Geeze, that's so complicated..Perhaps, John or Susan would be able to throw some sights as to what you have been experiencing more recently. You had a serious condition. It often amazes me how much some of you had gone through!! Wishing you well and take care.

  • All that I have learned on this site makes me more confident of my original belief that this new event is a flare/relapse of PCNSV (seizure, neck pain, constant headaches, nausea, facial numbness, brain fog, etc.) though the angiogram was negative and the MRI ( without contrast) did not show new lesions. (For my neurologist, a negative test means negative) My symptoms now are not as extreme i.e. headaches are more 7/10 vs 10/10 during original onset but have been constant and feel the same as my original "vasculitis headaches" So I am now approaching two months without treatment and have another two weeks before appointment with new rheumentologist. I feel like I am sitting around popping pain killers hoping that I get through the next two weeks without having a stroke, another more serious seizure etc. I am afraid and do not want to have regrets. I will contact the rheumentologist on Monday to update. Any other suggestions?

  • I PM-ed Susan for you. Hope John or Susan would be able to respond, shortly.

    All I could say is that I doubt you are not alone in this. Stay strong.

  • Thank you Ferntree.

  • HI,

    Just caught up on this thread and am fascinated by the similarity of the patterns related to CNSV, even in my low grade (mild) case. Initially triggered by stress? I was completing my degree with three children under 9 when mine started. so tick the box there. All the standard triggers mentioned above? - tick that box. Reaction to stress worse? Yep tick that box (I actually used to find stress exhilarating). Now when I am stressed all the symptoms start and I get really moody. When I have the headaches (or they are about to start) I feel anxious and confused. I don't want to go out or, if I am out, I get an overwhelming desire to return home. Exercise helps? Tick that box. I feel almost guilty that I am 'meant to be ill' (my words) yet get out on the bike to feel better. Although I agree with Kat (I think it was) there are sometimes when you just don't feel up to it.

    Couple of things that I notice haven't been mentioned is that if circumstances make me wake and get up before I would naturally do so I find my symptoms are worse that day. My body likes to work at it's own pace and timetable. Also my ability to spell seems to be all over the place. I just can't picture or form the words as I used to. This tends to relate to the headaches.

    Oh and if you want a laugh to cheer you all up, imagine this sight - I was out in the garden doing some planting the other day when I felt 'bee stings' on my foot. Having hopped around the garden (there may have been some cursing involved) and then whipped off my wellie and found no bee (my husband keeps bees so there was some logic in this) the other foot then also started to have 'stings'. A resigned smile spread across my face as I realised my body had found yet another way to make a fool of me! Oh well.

  • Hi Melon

    I really noticed that something was up when my Special Education students kept correcting my spelling on the blackboard! I lost the ability to multitask especially if there was too much noise. I could not listen to someone talk if the television was on. Driving in the city demanded my full attention and I wouldn't drive if I was too tired. I got lost in my neighbourhood last month and it took a while to figure out how to get home. After my initial treatment, several times, I would leave the grocery store and realize that not only did I leave the car unlocked but the keys were in the ignition and the car was running!! I became OCD about leaving the stove on

    (because I did) and frequently had to return home to check or call the kids and ask them to check. I was like the movie Momemto, with sticky notes of lists and reminders for everything. I also became pretty moody but mostly, I think, because I had no energy left at the end of the work day to cope with shift #2. I used to love to cook, entertain, go to plays, movies, the ballet and I stopped doing these things. Of course, when I was on prednisone I was so wired, I would decide to go to the movies at ten o'clock at night! The insurance company paying for my Long Term Disability were gently trying to push me back to work while I was still on cyclosphamide ( a school full of kids and their germs!) I resisted ( though always grateful for the coverage). Near the end of my leave they requested that I do a cognitive test. I think I did Ok on the assessment (I am trying to get a copy of that report done maybe 8 years ago) but there was one test I found so hard I cried all the way through it. I think it was a word recall test. He kept asking me why I was crying but I couldn't explain. I know that the most recent CT and MRI showed that I have had "extensive white matter changes" in the last five years of remission. Even accounting for my aging, I did not get an answer about why it would be so extensive. I thought I might have the same doctor reassess me using the older report as comparison but I'm not sure I really want to know. Maybe it's better just to learn another language and try to keep my brain (and my body!!!) active doing things I enjoy doing and not worry about the numbers. I am not normally so chatty but I really love that I am communicating with people who get my experience! Thank you all!

  • Thanks Kat,

    I agree - it is reassuring to speak to people with the same problem, particularly when it comes to issues that it is hard to provide 'proof' for. I have said to my neurologist, 'It feels like it is all in my head' and he replied (with a wry smile), 'It is!'

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