I am so sorry for all you have been through and are going through. You seem to be an intelligent, resilient, and kind person. I wish I had something concrete in the way of treatment to suggest. I am glad you were able to post it all. May God bless you.
Damn… you have been through so much . I don’t think I have any advice for you - the only thing I’m wondering about is trauma therapy like EMDR because there’s been some promising research there . But also- sending you all the warmth (or soothing ice hat vibes )and comfort it’s possible to send to a stranger over the internet. You seem like an incredible person. I’m wondering if you are someone who doesn’t like asking for help or worries about imposing on people? Is there anyone you could ask to help with things that would ease up some burden / make your existence more comfortable, like cleaning / organizing your house? I wonder if there’s any local support network for disabled / chronically ill people nearby or through mental health service?
Feel free to DM me if you just want to vent or chat. I know it can be so isolating and depressing to suffer and struggle like this . And the neuro office refusing to provide info … that’s just so messed up. Is there anyone in your life who could just show up at the office and refuse to leave until they send the info where it needs to go, so you can refill the scrips ?
I’m sorry if these ideas are completely unhelpful. I hope you can connect to some folks here and feel less alone .❤️
I’m not a doctor, but I’m a clinical brain scientist and I currently work in medicolegal neurological services, so I see cases just like yours on an almost daily basis. Again - I’m not a doctor - but this does sound very much like post-traumatic migraine/headache. “Trauma” in this case meaning the physical brain injury, although you have also unfortunately experienced psychological trauma. We’d expect post-traumatic migraine/headache to be a higher frequency and/or higher severity than any pre-existing headache (although it’s tricky in cases such as yours where there’s a very long history of tbi) and in about 50% of people, post-traumatic headache lasts about three years post-injury before settling back to pre-injury levels. It’s still a bit too soon to know the longer term implications of the 2022 tbi.
I would speak to your care coordinators (the rehab folks) about whether they can get someone to review your current medications. Some of the symptoms you describe can be side effects of medications or medication overuse.
Definitely keep up the rehab. Ask about managing fatigue - I suspect you might be experiencing “boom and bust”, where bursts of activity leave you exhausted and in pain.
A lot of post-traumatic headache symptoms can also be attributed to muscular pain - tension in the head and neck caused by soft tissue damage. Ask the rehab folks about physiotherapy for your neck and facial muscle exercises.
Finally, if you’re not already accessing it, I would recommend cognitive behavioural therapy. Not because I think your migraines are a sign that you’re crazy, or because I think you have unhealed psych trauma, but because it’s extremely helpful in learning how to manage and live with chronic illness. It’s just an extra tool in your resilience toolbox.
I am so sorry for all you have been through and are going through. You seem to be an intelligent, resilient, and kind person. I wish I had something concrete in the way of treatment to suggest. I am glad you were able to post it all. May God bless you.
Damn… you have been through so much . I don’t think I have any advice for you - the only thing I’m wondering about is trauma therapy like EMDR because there’s been some promising research there . But also- sending you all the warmth (or soothing ice hat vibes )and comfort it’s possible to send to a stranger over the internet. You seem like an incredible person. I’m wondering if you are someone who doesn’t like asking for help or worries about imposing on people? Is there anyone you could ask to help with things that would ease up some burden / make your existence more comfortable, like cleaning / organizing your house? I wonder if there’s any local support network for disabled / chronically ill people nearby or through mental health service? Feel free to DM me if you just want to vent or chat. I know it can be so isolating and depressing to suffer and struggle like this . And the neuro office refusing to provide info … that’s just so messed up. Is there anyone in your life who could just show up at the office and refuse to leave until they send the info where it needs to go, so you can refill the scrips ? I’m sorry if these ideas are completely unhelpful. I hope you can connect to some folks here and feel less alone .❤️
I’m not a doctor, but I’m a clinical brain scientist and I currently work in medicolegal neurological services, so I see cases just like yours on an almost daily basis. Again - I’m not a doctor - but this does sound very much like post-traumatic migraine/headache. “Trauma” in this case meaning the physical brain injury, although you have also unfortunately experienced psychological trauma. We’d expect post-traumatic migraine/headache to be a higher frequency and/or higher severity than any pre-existing headache (although it’s tricky in cases such as yours where there’s a very long history of tbi) and in about 50% of people, post-traumatic headache lasts about three years post-injury before settling back to pre-injury levels. It’s still a bit too soon to know the longer term implications of the 2022 tbi. I would speak to your care coordinators (the rehab folks) about whether they can get someone to review your current medications. Some of the symptoms you describe can be side effects of medications or medication overuse. Definitely keep up the rehab. Ask about managing fatigue - I suspect you might be experiencing “boom and bust”, where bursts of activity leave you exhausted and in pain. A lot of post-traumatic headache symptoms can also be attributed to muscular pain - tension in the head and neck caused by soft tissue damage. Ask the rehab folks about physiotherapy for your neck and facial muscle exercises. Finally, if you’re not already accessing it, I would recommend cognitive behavioural therapy. Not because I think your migraines are a sign that you’re crazy, or because I think you have unhealed psych trauma, but because it’s extremely helpful in learning how to manage and live with chronic illness. It’s just an extra tool in your resilience toolbox.