Baby Moth Posted September 1, 2023 Author Share Posted September 1, 2023 Thank you - I still don't have the correct items, but hoping to soon (most likely Tuesday) and I am going to ask for a script for some smaller portable tanks. I had to get a new PCP b/c the one I was working with has been downright awful. She thinks I'm just having "headaches" and has messed up my request twice now. Question: Is it part of CHs to have headaches / head pain / pressure all day? I feel pressure behind my eye and in my eyebrow and sometimes below in by cheek bone area. I feel like I could almost handle the attack knowing it will end for a while, but this consistent pressure and pain (with spikes throughout the day), is really wearing me down. Thanks again for all your help. It really means so much Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 1, 2023 Share Posted September 1, 2023 49 minutes ago, Baby Moth said: Is it part of CHs to have headaches / head pain / pressure all day? I feel pressure behind my eye and in my eyebrow and sometimes below in by cheek bone area. I feel like I could almost handle the attack knowing it will end for a while, but this consistent pressure and pain (with spikes throughout the day), is really wearing me down. In your first post you mentioned that you have had all-day headaches, with spikes. We kind of ignored that, but as you raise this I think you might want to consider the possibility that you might have a CH "lookalike" condition, some form of hemicrania. Hemicranias typically do not respond well to oxygen or triptans, but I gather that you have not really tried either one yet. You don't really fit into any of the specific hemicrania categories, but you can see the symptoms of one type here: https://www.ninds.nih.gov/health-information/disorders/hemicrania-continua#:~:text=What is hemicrania continua%3F,both sides of the head. It could be/is most likely that you have CH and you are experiencing what are called "shadows," but what you describe seems like it might be more than shadows. In the document I keep urging you to read -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- there is a discussion of shadows and things you might do to alleviate them. 1 Quote Link to comment Share on other sites More sharing options...
Baby Moth Posted September 1, 2023 Author Share Posted September 1, 2023 1 hour ago, CHfather said: In your first post you mentioned that you have had all-day headaches, with spikes. We kind of ignored that, but as you raise this I think you might want to consider the possibility that you might have a CH "lookalike" condition, some form of hemicrania. Hemicranias typically do not respond well to oxygen or triptans, but I gather that you have not really tried either one yet. You don't really fit into any of the specific hemicrania categories, but you can see the symptoms of one type here: https://www.ninds.nih.gov/health-information/disorders/hemicrania-continua#:~:text=What is hemicrania continua%3F,both sides of the head. It could be/is most likely that you have CH and you are experiencing what are called "shadows," but what you describe seems like it might be more than shadows. In the document I keep urging you to read -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- there is a discussion of shadows and things you might do to alleviate them. Hi - Thank you. Yes, I've read that a few times. I tried ginger yesterday and today I'll try one of the other ones. I'm also getting together the D3 regimen and started taking most of them yesterday and all of the vitamins today (in some form, I don't have it exact yet). It's a very helpful article <3 1 Quote Link to comment Share on other sites More sharing options...
Baby Moth Posted September 1, 2023 Author Share Posted September 1, 2023 2 minutes ago, Baby Moth said: Hi - Thank you. Yes, I've read that a few times. I tried ginger yesterday and today I'll try one of the other ones. I'm also getting together the D3 regimen and started taking most of them yesterday and all of the vitamins today (in some form, I don't have it exact yet). It's a very helpful article <3 Hmm not great lol - I don't know if that's what it is either. I appreciate you sending. 1 Quote Link to comment Share on other sites More sharing options...
Baby Moth Posted September 2, 2023 Author Share Posted September 2, 2023 Small Victory!! I got my mask!! Not from the doctors / insurance but from Clusterbusters.com <3 Came 100xs faster then then Apria delivered. 5 Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 4, 2023 Share Posted September 4, 2023 Some people like using just the breathing tube, without the mask. This video shows how to assemble the thing, and then shows him using it with just the tube. https://youtu.be/eX76JrEvNxE 1 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 4, 2023 Share Posted September 4, 2023 From a ladies perspective not sure which you are but suppose it matters not. I use just the breathing tube at work. No messing up the makeup and what not. No mask outlines on the face etc.. when I'm home I use the over the nose and mouth mask as it seems to help me abort quicker although I am still at the hit and miss phase of the 02. .. I've tried lots of methods but have still yet to hone it in. Nothing wrong with that I suspect. Afterall it takes time and effort to get things rt. I'm really hoping you stick around a while because being here has helped me so much and I want that for others. You included.. 3 Quote Link to comment Share on other sites More sharing options...
Baby Moth Posted September 4, 2023 Author Share Posted September 4, 2023 18 hours ago, CHfather said: Some people like using just the breathing tube, without the mask. This video shows how to assemble the thing, and then shows him using it with just the tube. https://youtu.be/eX76JrEvNxE Yes, I have that as well 1 Quote Link to comment Share on other sites More sharing options...
Baby Moth Posted September 4, 2023 Author Share Posted September 4, 2023 15 hours ago, BoscoPiko said: From a ladies perspective not sure which you are but suppose it matters not. I use just the breathing tube at work. No messing up the makeup and what not. No mask outlines on the face etc.. when I'm home I use the over the nose and mouth mask as it seems to help me abort quicker although I am still at the hit and miss phase of the 02. .. I've tried lots of methods but have still yet to hone it in. Nothing wrong with that I suspect. Afterall it takes time and effort to get things rt. I'm really hoping you stick around a while because being here has helped me so much and I want that for others. You included.. Yes, I actually haven't used it for an attack yet (last one was on Thursday) but have practiced with it a few times. I hope that it helps as an abortive. Yes I plan to stick around : ) this forum is the most help I've received for this disorder yet. Do you all know how I find the support group? Quote Link to comment Share on other sites More sharing options...
Baby Moth Posted September 4, 2023 Author Share Posted September 4, 2023 27 minutes ago, Baby Moth said: Yes, I actually haven't used it for an attack yet (last one was on Thursday) but have practiced with it a few times. I hope that it helps as an abortive. Yes I plan to sick around : ) this forum is the most help I've received for this disorder yet. Do you all know how I find the support group? I found it <3 2 Quote Link to comment Share on other sites More sharing options...
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