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Convinced I’ve Been Misdiagnosed

I’ve had 4 concussions, all between the ages of 18-25. Over the 18 years following the last concussion, I’ve had 1-2 migraines per month. Over the last 3 years, I went from 2-3 migraines a month to 2-3 migraines a week and strong daily headaches that never go away. I have since noticed personality and other cognitive changes.


My neurologist put me on a variety of “preventative” medications that have had little or no effect. Since I’ve received no benefit from pain medications, I cannot even take anything to help relieve the daily headaches, but my migraine injections help slightly with migraines.

I was diagnosed 3 years ago with chronic migraines and last week with migraine, transformed. I’m convinced I have post-concussion syndrome or, God forbid, CTE.

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Comments

  • Bill K author
    5 years ago

    Thank you for the info. I’ll even ask my doctor about Mexiletine.

  • msruff
    5 years ago

    I’ve had numerous concussions over the years, and I had a single migraine for 15 1/2 years, which totally debilitated me. I finally went to the Jefferson Headache Center in Philadelphia, and now I only get a migraine about once every 3-4 week, which the medications help. I’m also on an amazing preventive called Mexiletine. I would strongly suggest you look the clinic up (http://www.jefferson.edu/jmc/departments/neurology/programs/headache.html) and see what they can do for you.

  • Katie M. Golden moderator
    5 years ago

    MsRuff,
    I too have been to Jefferson and am so grateful for the help they have given me. It’s always great to know someone else who has been helped by them!
    -Katie

  • Katie M. Golden moderator
    5 years ago

    Bill,
    I’m glad you found the info useful. I found a multi-part series on CTE from the Pittsburgh Gazette last year that discusses the many causes and current research for CTE. Unfortunately, this is a fairly new discovery and there is little funding for it. It doesn’t seem that there are any clear, standard treatment plans for those who could potentially be suffering from it.

    Of course, I am not a doctor and cannot diagnose you. I’m glad you have access to a Headache Specialist. Your doctor, however, may not have any better tools than the ones he is using now to combat your symptoms since CTE is still in the early phases of research and basic understanding. But on an overall level, if you feel like your doctor isn’t listening to you, it doesn’t hurt to get a second opinion.

    I’m glad you’re finding comfort in this website!
    -Katie

    http://www.post-gazette.com/news/health/2013/05/13/Scientists-hunt-for-ways-to-untangle-damage-of-chronic-traumatic-encephalopathy/stories/201305130194

  • Katie M. Golden moderator
    5 years ago

    Bill,
    I’m really sorry to hear that your headaches have progressed to this degree. Are you seeing a Headache Specialist? Any neurologist is capable of helping with Migraines, but a Headache Specialist can pinpoint which of the over 300 headache disorders you may be suffering from. To find one in your area, check out this link:
    http://www.ucns.org/globals/axon/assets/10300.pdf

    If you do have Chronic Migraines, it can take a while to figure out which medications are going to work for you. Unfortunately it’s a lot of trial and error, which can be really frustrating while you are in a lot of pain.

    I’ve done a lot of reading about athletes who have concussions, although I’ve only had one in my life. Sidney Crosby of the Penguins was benched for successive concussions a few seasons ago. He now suffers from bad Migraines as a result. Not easy when taking hits is your job.

    Chronic traumatic encephalopathy (CTE) as you mentioned, is something that currently cannot be diagnosed when the sufferer is alive. Only through multiple post-mortem donations have scientists and doctors been able to study athletes who have had constant concussions and find markers in the brain that characterize this disease. The symptoms of CTE are changes in mood, cognition, behavior, and possibly motor disturbances. Some of these symptoms overlap with Migraine. But it’s also possible that the two could be co-morbid, meaning that concussions could give someone Migraines and also separately cause CTE. Only a Headache Specialist could really tell you for sure.

    One thing that seems to be a common theme with those that had CTE was chemical dependancy, depression and often suicide, like Junior Seau of the Dolphins. Again, this are also symptoms that Migraine sufferers can struggle with. If this is something you are experiencing, I strongly urger you to talk to your doctor and get help. There are things that can be done to improve your quality of life.

    Since CTE is difficult to diagnose, I’m not exactly sure how it is treated. But I imagine the best way to approach it is to target the symptoms that you do have. So having a specialized doctor on your side is very important. And make sure to explain all your fears so he/she can properly diagnose and treat you.

    Thanks for sharing your story.
    -Katie

  • Bill K author
    5 years ago

    Hello Katie;

    I am seeing a headache specialist, who has tried nearly everything over the last 3 years. My regular day is a painful postdrome, sandwhiched between migraines. I never get out of it. I just had an MRI, which revealed inflamation, but nothing else. Along with the cognitive problems, I keep hoping it’s not CTE. I added Tizanidine this week, but it’s too early to tell.

    I’m a former athlete that cannot take a walk without my brain squeezing me to a stop. My “specialist” needs to acknowledge that my 4 concussions are behind this madness.

    I’m glad I found you. It is difficult for me to research this stuff because I don’t have good days. I have such poor focus and crazy pain when I read and it takes too long to think of the right words when I speak or type. I’m a college graduate who feels like a 2nd grader. I never knew there were so many of us out there. Thank you for being there and giving us all a place of refuge.

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