Breath work simply is inhaling for four seconds and exhaling for six seconds, nothing more than that. I believe that the clinical trial is using biofeedback to research different relaxation modalities (such as progressive muscle relaxation) to calm the nervous system.
Love this approach: “Ok what needs to be done. How can I improve quality of life and long-term outcomes.” What can I do to just get through it. How can I get out of this mess? Just tell me what I need to do, tell me what I need to understand, and I’ll do it, I’ll study it.”
I have a feeling that the more space you give to these questions, the more the answers will come to you. Whilst they may come to you from the voice of another, it may be an inner voice that guides you. It might come through more study too and reading different materials (it did with me) but it sounds like you have already done a hefty amount of that so it might come from the existing knowledge and wisdom you already have within.
Thank you for sharing your plight and gifting us much needed insight to your lived experience, research, study and understanding of this deeply complex and misunderstood disease. I wonder if MUMS will become like cluster attack, in that what was once thought to be rare is now starting to be realised as much more common - that it’s the knowledge and understanding around it that’s rare and not the actual type of attack?
that's exactly what it is. MUMS itself isn't rare but information about the subtype is. My friend who is a Jefferson headache specialist said that she has a good number of MUMS patients but that she never has seen a hemiplegic migraine patient, which should give us all an idea of how rare HM is. And HM rightfully gets a lot of attention because it is debilitating and genetic mutations are associated with it -- but, because HM has gotten so much attention, MUMS has completely fallen off the radar.
And, since many doctors don't fully process how cortical spreading depression works (they know it but they just don't put the pieces together), they see weakness and immediately associate it with hemiplegic migraine when they should be asking "is weakness presenting *with* numbness?" It was like me reminding the neuro PA the other night, "remember that with cortical spreading depression that weakness and numbness should not be occurring at the same time." He even interrupted to tell me that he knew how migraine auras worked but it took me reminding him of the difference for it even click. So that's why I'm trying to get as much information out there as I can so that those diagnosed with HM can discover the differences and then self-advocate if necessary, because MUMS does need more aggressive treatment or else it will spiral out of control.
Thank you for sharing this. What is 4-6 breathwork comprised of? What do they have people do in the clinical trial?
Breath work simply is inhaling for four seconds and exhaling for six seconds, nothing more than that. I believe that the clinical trial is using biofeedback to research different relaxation modalities (such as progressive muscle relaxation) to calm the nervous system.
Cool! what does the biofeedback measure? Stuff like heart rate beats per minute?
Love this approach: “Ok what needs to be done. How can I improve quality of life and long-term outcomes.” What can I do to just get through it. How can I get out of this mess? Just tell me what I need to do, tell me what I need to understand, and I’ll do it, I’ll study it.”
I have a feeling that the more space you give to these questions, the more the answers will come to you. Whilst they may come to you from the voice of another, it may be an inner voice that guides you. It might come through more study too and reading different materials (it did with me) but it sounds like you have already done a hefty amount of that so it might come from the existing knowledge and wisdom you already have within.
Thank you for sharing your plight and gifting us much needed insight to your lived experience, research, study and understanding of this deeply complex and misunderstood disease. I wonder if MUMS will become like cluster attack, in that what was once thought to be rare is now starting to be realised as much more common - that it’s the knowledge and understanding around it that’s rare and not the actual type of attack?
that's exactly what it is. MUMS itself isn't rare but information about the subtype is. My friend who is a Jefferson headache specialist said that she has a good number of MUMS patients but that she never has seen a hemiplegic migraine patient, which should give us all an idea of how rare HM is. And HM rightfully gets a lot of attention because it is debilitating and genetic mutations are associated with it -- but, because HM has gotten so much attention, MUMS has completely fallen off the radar.
And, since many doctors don't fully process how cortical spreading depression works (they know it but they just don't put the pieces together), they see weakness and immediately associate it with hemiplegic migraine when they should be asking "is weakness presenting *with* numbness?" It was like me reminding the neuro PA the other night, "remember that with cortical spreading depression that weakness and numbness should not be occurring at the same time." He even interrupted to tell me that he knew how migraine auras worked but it took me reminding him of the difference for it even click. So that's why I'm trying to get as much information out there as I can so that those diagnosed with HM can discover the differences and then self-advocate if necessary, because MUMS does need more aggressive treatment or else it will spiral out of control.