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Showing content with the highest reputation on 10/18/2024 in Posts

  1. I suppose blood pressure must have also been thoroughly checked? Me: Nothing even vaguely resembling a medical professional, but when I was having very near passing out episodes multiple times daily, I put 2+2 together and realized the CoQ10 component of the D3 regimen is a known blood pressure reducer, so I went off of it and haven't had another pass-out episode since (close to a year). I'm not aware of passing out episodes being an actual cluster related sign or symptom.
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  2. I have found that anything that disrupts my normal everyday life is a trigger. Interrupted sleep patterns is a huge trigger for me. For me the more I can keep things in the same pattern the better I can manage my attacks.
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  3. Thank you very much to all who have taken the time to help me!
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  4. I can't just reply to questions and be done with it (so you can skip my reply if you wish). I work in psychiatric ward and get sometimes called to help when there are patients who are suicidal and have CH. Very, very often when CH is managed to get under control, the suicide plans vanish and again, very, very often never return. But there are people who have more complex problems and conditions and need help beyond getting CH under control. Then you need to keep reaching for help - relentlessly as long as you need, or better yet - find a support person who helps you fight. And it's incredibly tough when the things that work for others do not work for you - these people would need a community of their own. People with torturous chronic pain - whatever the diagnosis or no diagnosis at all, who have not yet found help and those who have found something that helps mixed in one group. I hope you keep reaching out and find help.
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