User Tag List

Likes Likes:  0
Results 1 to 4 of 4

Thread: Headaches

  1. #1
    Join Date
    Jan 2011
    Posts
    2
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Headaches

    Hello to All:

    We are new to this site and we have some questions we would like to put out to other WG sufferers.

    My husband was diagnosised with Limited WG two years ago. As of last month he is in remission and we are both very thankful for that. Although we were excited to hear this news Rick has been suffering from extreme headaches that are 24/7. We have been to 2 top Neurologists and 1 of them that specialize in headaches and because Rick doesn't fit into a headache profile they have told us that there is nothing they can do. He has tried different drugs with no success and because they are constant and with no triggers they are not sure where to go with this problem.

    Is there anyone else out there that is dealing with this same debilitating pain day in and day out?
    Also we were checking out the Mayo Clinic in Rochester, Minneapolis. They have a clinical trial going on for WG. Has anyone else been involved with this particular study. We are from B.C. and so we were wanting to exhaust everything Canadian first if we can before heading south of the border because of the financial expense that can occur.

    We would appreciate any feed back.

    Toughfight

  2. #2
    Join Date
    Apr 2009
    Location
    South Carolina
    Posts
    4,273
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I would go to the Mayo Clinic to look to get a good second opinion. I have some questions did your husband stop taking any medicines recently, sometimes that can cause rebound headaches. Is he having any other symptoms besides headaches? I use to get severe headaches when my WG was very active and when my blood pressure was high.

  3. #3
    Join Date
    Jan 2010
    Location
    Hoboken, NJ
    Posts
    1,425
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    What were Rick's original symptoms (I'm guessing tracheal stenosis, since you are in that category) and what does his rheumy have to say about the headaches. I know that there is at least one other Canadian poster on this site with debilitating headaches also, but they are WG related.

    My WG specialist ENT always says that a WG patient should assume WG as the cause of most of problems, very little downside if you do that. If you're wrong, it's likely to be something less serious...but if you are right you may have saved yourself some very serious complications.

  4. #4
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Have they done a brain MRI? Wegs in the CNS is rare, but one symptom can be headaches like that. It's very important to have a Wegs specialist overseeing his care, even in remission. There are Canadian Wegs specialists available but you might have to travel. Mt Sinai in Toronto has at least one and one of our members PBerggen has one in Swift Current. You can call the VF to ask about others.

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •