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1st post, Need Guidance Regarding TBI

I suffer from chronic severe “migraines”, from traumatic brain injury 19 years ago due to auto accident. Basically have had a headache for 18 years, 15 years ago pain increased to the point of inhibiting “normality”. Haven’t worked a normal job in that long because of it. I am in horrible pain 24/7. I’ve been deemed disabled for last 12 years because of my nonstop pain. I am middle age, I have done every type of treatment you can do in the states from Chinese medicine to Botox and everything in between.

Where would I find people with similar conditions as me? Is there a group or social network thingy???

My condition has worsened dramatically in the last 6 months(hard to imagine) for no apparent reason, or so it seems. so I’m wondering if there is anyone I can compare “notes” with?? Someone familiar with TBI and migraine treatments in USA.

Any direction or guidance would be greatly appreciated!!!
Thank you for the help in advance.

  1. Hi Dn2292,

    Thank you for reaching out and sharing your story with us. I can tell you from experience, and research, sustaining a TBI can make migraine attacks and headache disorders more prolonged and difficult to treat. My TBI occured in 1996 and changed my life, and not for the better. Here are articles on TBI I hope help;

    People with migraine disease have overly sensitive brains, and adding a TBI to that complicates things. I've found stress reduction, trigger avoidance, meditation, yoga, cannabis and Botox to be helpful.

    I see you mentioned Botox, were you able to give it a few rounds? For some of us, Botox can take three or four rounds before we see a reduction in migraine attack frequency and severity.

    Triggers - have you been able to identify any of them? Migraine attack triggers can include but are not limited to certain foods, changes in the barometric pressure, skipping meals, dehydration, odors, lights and many others. If we are able to avoid the triggers we can, this may help reduce migraine attack frequency and severity. Keeping a detailed migraine diary is helpful to do this which you can read more about here;

    Has anything changed in the last six months that may be attributed to this spike in attack frequency? It's not uncommon to have more than one type of headache disorder, I know I do. I know it can feel like you've tried everything out there, but that may not be the case. There are over 100 medications and supplements that can be used to treat migraine disease. When you get a chance, take a look at this information;

    I'll stop for now, let me know what you think,

    1. Thank you for response!! I do want to make one point clear, prior to my car accident I never experienced a headache, not once. So my headaches are from actual brain damage due to the car accident, we know this for certain. But anything beyond guessing??? LOL

      Yes I did Botox (started 15yr ago) for a total of... I don’t know how many years?(I can’t recall time frames) it all runs together... that’s where my wife steps in :>😉 It helped alleviate the pain for a handful of years(maybe 10?)

      I am a very aggressive patient, I have attacked my problem with the same passion/aggression that I used to apply to my secular work. Over the last 18 years I have reviewed food allergies with a fine tooth comb, my loving wife has endured several different food elimination/restriction campaigns to rule out allergies exacerbating my pain level. While each of these diets lasted for months at a time, my pain level was never infleuenced.

      My life is under a microscope, daily trying to figure out why....systematically really for the last 15 years.
      That’s why the last 6 months have been so messed up. Up til now everything had a reason, accidentally hit your head with the cabinet door?.... in bed unable to move for 2 weeks. Change to new medication and it ends up to be a freaking joke??? .......6 months of living hell to get over the new med.

      But the last 6 months, Seemingly no reason for my pain level.

      I am exhausted from writing this and my iPad screen is killing me, that’s all for now. I will look at your article link tmrw, again thank you for the help!!!

      1. First off, I'm so sorry you're going through this. I cannot speak with any knowledge of TBI, although you mentioned your iPad screen killing you. Unforunately as I'm sure you're aware, screen/light sensitivity is often a component of both migraine and TBI. They do make screens all along a spectrum to help with that. Filters that can attach to your current screen. Screens that turn down the blue. They even have a screen that doesn't emit any light, or flicker at all. So, I thought I'd offer that idea up, since I can't do more.

        1. I was also in a vehicle accident. My migraines run 5 - 10 days a month, so bad the roots of my hair hurt. I always have a headache, but just not as severe. My started me on Lamictal as a preventative, also for depression. I think it had helped, just not enough. I take butalbital - acetaminophen - caffeine tablet (50-325-40 mg) (can't remember bar name) which really helps - if catch the migraine early. Triptons didn't help at all. I haven't tried the new meds.
          I'm also taking 800 mg of gabapentin 3X a day for neuropathy, 100 mg Lamictal 3X a day, 50 mg of Elavil at bedtime.
          I bought a Headache Hat, has 3 rows of frozen 1 inch squares of water in a wrap that velcro"s in The back... It is Awesome! You wear it as a hat and walk around or pull out over eyes and lay down. The frozen squares can be moved to the areas that you want it at.
          My friend, who has migraines, said County Time lemonade mix helps her headaches... I haven't tried it yet.
          Hope you can get relief!
          😇 Angel

          1. Hi Angel,

            Thank you for sharing your journey with us. I also sustained a TBI from a fall over 20 years ago and my life hasn't been the same.

            I did want to mention to be careful when taking butabital too frequently. It may increase our risk of rebound headache and really is not a great option for migraine pain.

            I'm unable to take the pill/tablet form of triptans due to undesirable side effects. I am however, able to use triptans in the nasal spray form. Have you tried any other delivery system?

            I'm a bit skeptical about a lemonade mix helping a migraine attack! if it were that easy we'd all be drinking it!!!

            Keep us posted on how you are doing.
            Nancy Harris Bonk, Moderator/Patient Advocate

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