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Thread: Any Wegs Brain Attacks?

  1. #21
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    Hi.

    Back when my WG was most active and was on all the meds, if there was too much activity around me or was under any stress I sort of went into a shutdown mode. I would just phase out. Before this I noticed my hands would shake so badly that I couldn't write properly.

    Others around me were very aware of these episodes which happened frequently at work.

    These events lasted for probably 15 minutes or so. At their worst I also had trouble forming words. It was so distressing.

    Ive never reported these events to the doctors. There was so many other things happening with my health, it didn't really rate as a priority.

    Currently I'm in remission they say but these shaky blank moments are still with me. It seems when I'm stressed I feel very shaky and I loose concentration. A friend of mine whom has a very wide knowledge of illnesses in general feels it may be damage to the central nervous system caused by the wegener's.

    I think he is right. Does anyone else suffer this? Or maybe can someone shed some light on it?

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    It's possible that the WGs dog got your central nervous system...it is more likely you are stressed, have a low resistance to anxiety, and, perhaps, could look at that side of it. WGs is its own best perpetuator of the disease in that it presents in so many ways it becomes very difficult to tell anything without bloods and such. As it turned out, panic and anxiety were symptomatic warnings of my WG coming on...weird, but seems to be true in that tho I'm still on Lexapro I have not had one anxiety attack since the dx era. Best to you.
    Last edited by Dirty Don; 09-01-2014 at 09:42 AM.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  3. #23
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    Don, I understand what your saying. I also at the time was on Lexapro I'm sure I would have been stressed at the time. I'm not on meds now. It is possible I may be still under stress now.

    In the past I have had issues relating to stress, but I've never experienced these shakes or this phasing out stuff.

    The other thought I've had is, is this damage caused by Prednisolone? You may remember when I was on pred I suffered multiple episodes of psychosis and was hospitalised as a result.

    Ive heard some people that use speed or marihuana can experience psychosis and in some cases the psychotic symptoms are with them for life. Maybe the Prednisolone can have a similar affect? Maybe these events are minor psychotic events?

    Sorry for the questions that may never have an answer.

  4. #24
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    Quote Originally Posted by PJ2010 View Post
    Ive heard some people that use speed or marihuana can experience psychosis and in some cases the psychotic symptoms are with them for life. Maybe the Prednisolone can have a similar affect? Maybe these events are minor psychotic events?

    Sorry for the questions that may never have an answer.
    I have read that some of the concentration problems from Pred can persist long term and some times there are residual effects of psychotic episodes that persist. A good mental health expert like a clinical psychologist should be able to assess that for you and your apparent level of stress now, and then tell you more about what might be going on for you. Counseling for the stress of dealing with the Wegs diagnosis is also usually a good idea too as many of us found it helpful.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by lfu2 View Post

    Sorry for this long tirade. It's comforting knowing that the people that read this will understand what I am talking about.
    LFU2
    No need for the apology. Us Yorkshire folk are tough 'uns, but this illness really does try your patience!

    You'll have to stick a pin in the weggie forum members map (link near top of this page), you'll be my closest neighbour. Plus I'm in Leeds about every other week to watch the mighty (well not so mighty at the moment) Whites. Perhaps this forum should take on Leeds United's Marching On Together statement!
    Diagnosed April 1995

  6. #26
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    Hello Brain Club,
    I have something interesting to report. I saw my Rheumy a few weeks ago and was having problems with my 'brain' that are still not explained . I could tell he was not really understanding how serious my problem is so I took a chance and showed some emotion. I cried. So, he asked me if I was maybe just having 'emotional problems'.
    Inwardly I sighed.
    Like others here , I've heard this kind of thing before. But , I've come to trust this doctor so I patiently and calmly told him I did not think so. I told him that I know he was not my doctor when I originally had extreme symptoms and problems. I suggested he talk to the doctor who I was seeing at the time if he had some doubts that I had a physical problem. I told him to talk to the doctor who saw me when I returned from China in a wheel chair and was admitted to the hospital through the ER and ask him if he thinks it is emotional problems.

    Well, he took a few seconds to ponder that and I could see him mentally switch gears. He asked if I ever had a 'Black Blood MRI'. I said I was sure I had not because I had never even heard of one. I asked
    'Did they have this type of imaging 14 years ago when I got sick?'
    He said, 'No'
    I said, 'Well, that would explain why I have not had it'

    So, to try and make this story short- I am getting a Black Blood MRI on September 9. This test shows blood vessel walls in exceptional detail. Previous tests show the entire blood vessel but not the blood vessel wall. I think they call this 'black blood' because the image blanks out the blood and just shows the rest of the structures. I can't find any easy to read info on this imaging technique , I think it is relatively new.
    And, my insurance company called me and told me they will cover it.

    So, after all these years I may finally get an image that lets the doc see what is causing me such incredible misery at times. It might even be useful for treatment- I don't know.
    After I get the test I will report back here the findings.

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    Hey Brain Club! 10 month update, April 2015. Still alive and well! Perhaps not as active as I'd like but able to walk and get around and spend time with family and friends.

    TREATMENTS: Solu Medrol Pulse 1 g/d x 3. Prednisone, Rituxan (4 so far), imuran, meditation, rest, careful diet, tapered exercise regimen.
    CURRENT SYMPTOMS: Gut, Eyes, Nerves in Leg and Back, Lumbosacral, Ear, Sinus, Lung, Neurological Fatigue and wegs fatigue, Muscle Weakness.
    RESOLVED SYMPTOMS: Brain, Nodules, Joints,

    Brain recovery has been decent. Regained ability to walk but not total control. Have constant headache but its not a migraine. Pulse steroid therapy made me nearly psychotic and ruined my ability to take pred without getting sick with major anxiety and aggression. Had to taper off pred 1 mg at a time, very slowly, rebounding along the way until finally, today is 8 days off pred!!! So happy about that, but am on the verge of losing my hearing in the left ear and have wegs in the nerves causing burning that keeps me up at night. So, not a remission yet. Have been charting my symptoms daily which I learned here and is very helpful.

    In retrospect, the things that helped the most over the past 10 months have been, arghh, the steroids, rest, diet, exercise and charting. I'm not sure that rituxan has done anything. Imuran made me worse, guts bled, but they bled after rituxan too... Elliptical machine, light weights, stretching helps a lot. Have a great business but can't work. It'll definitely kill me if I get that train rolling. Hard to accept that one but it's important. Feel like God has been with me every step of this journey and so am trying to trust that financially. Hope you all are enjoying the spring! T

  8. #28
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    Sounds great that you are well on your way to our sub-par normal!

    Have constant headache but its not a migraine.
    I have those, too. Its what started me on my way to a regimen of daily pain meds. I really know when I forget to take my afternoon dose. Like you, in addition to the headaches, I have a lot of general pain, with my legs being the worst. Luckily, other than the secondary issues with my endocrine system, nothing else seems to be adversely affected.

    This winter has been "not so good", but I am coming up to my 5 year anniversary point. I had my brain surgery on 21.Apr.2010. According to the internet, I am supposed to be 80% dead. Ya, just gotta love the internet.... :-)
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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