Exigeous

When I saw a primary care today (to get in with a neurologist tomorrow) she mentioned that with clusters the pain starts behind one of your eyes on the left side of your head. My experience has been my entire head - but in some ways it comes on so fast I can't really recall where it starts. I'm at the end of a light attack (hit level 8 for 30 minutes, that was 2 hours ago and now I'm at a 5), this has been the lightest so far (started D3 3 days ago so maybe). She did give me sumtriptan, which I took when this started so it's also possible that's helping. The odd thing is this time I did feel it start to come on behind my left eye - but I'm enough of a skeptic to acknowledge that she could have put that in my mind and that's why. I didn't think about what she'd said until I was at level 8 already so not sure if placebo or real - and maybe I just haven't paid attention before. So for those of you with clusters is that true? Where does your pain start/end up? For me at full screaming it's my entire skull, like someone has reached inside my skull and is crushing my brain with every beat of my heart. What you guys experience or am I maybe dealing with something else? ~Ross

Once again your input is invaluable - but let me clarify, I haven't taken the indomethacin or sumitriptan yet - I just got the scripts a few hours ago. From what I just read it sounds like I do NOT want to take them anyway, gives me a headache??? WTF! That's WHY I would be taking them! I also don't have a weak gut at all, pretty strong actually, but (before this) would rather feel anything other than nausea!! I think at this point I'll try to sumitriptan if I have an attack - you say oral doesn't work for clusters at all - again WTF? Is that one persons opinion of consensus? I've said it before and I'll say it again, I think the scariest thing a doctor can tell you (in the face of something serious) is "I dunno". I was straight up disappointed when they couldn't find anything on the CT or MRI. Just give me something to fight, not a mystery condition! 23 hours to the neurologist. I just keep counting that time. ~Ross

Holy shit are you lucky - if only you were in north Georgia and I could go there too! I did see a primary care today who wouldn't give me oxygen (as I am seeing a neurologist tomorrow and she wanted to wait) but she did give me 8mg Zofram (for vomiting), and 100 mg sumitriptan (oral) and indomethacin 50 mg (wrote a new post about them). So we'll see if that can keep me from having an attack tonight (last attack was 48 hours and weaker than others, last screaming level 10 was 72 hours). I definitely am still having shadows, that range up to a level 5 for a few moments then usually come and go for a few minutes then nothing. Thanks again for all you guys are sharing, it's amazing how much information helps isn't it? -Ross

While I don't have an official diagnosis yet it seems very clear clusters have hit me - starting about 10 days ago. I'm so far lucky in that I have an appt with a neurologist tomorrow, today I saw a primary care (had to do that first). She was more helpful that expected, and while she wouldn't give me oxygen (wanted the neurologist to do that, oh goodie another night in terror/pain) but she did give me indomethacin 50mg. It says to take twice a day - but as I've never had this nor read much about it yet I wanted to see if others had thoughts on it. She also gave me 100mg sumitriptan (oral) that I only take as needed, then another 2 hours apart. I've see triptans in many posts but also don't know enough about them, side effects, etc. I tell ya, it's really frustrating, hell infuriating, that they'll give me drugs but I have to fight to get oxygen. I generally don't agree with conspiracy theories about docs wanting to prescribe this or that to help themselves but I gotta admit, this is definitely a WTF moment. Oh, and I fully realize that no one can give me "medical advice" online, I'm simply hoping others will share their experiences. Thanks,Insert other media -Ross

You guys amaze me - but don't surprise me at all. When this first hit me I'd truly never felt so alone and helpless against it's fury. I had what I'm sure are the same thoughts as everyone else here, no one has ever felt this level of pain. No one. No one will understand. They will look at me like the asshole doctor at the ER did, clearly thinking I was faking or exaggerating in some way to get pain meds, etc. (I could have absolutely decked him when he said "well you'll just have to deal with it I guess"). While I wouldn't wish this on anyone knowing there are others who do understand and WANT to help is amazing. Thanks for the links to the O2 study, already printed. I'll print everything CHFather posted so I don't forget any of it (seriously, amazing post). As for a quick update on me - I haven't had an attack in 3.5 days, the longest before was 2.5 - they've been getting further and further spaced since they started with the duration of "level 10" screaming pain shortening each time (last was right at an hour, first attack 10 days ago was 5+ hours of screaming). I did start the D3 regimen right after my last attack so I'm not sure if the D3 regimen is 'working' or if they are just naturally spacing apart. Is that common? Does it mean anything - or just is what it is? Tomorrow morning is the PA at the neurologist so I'm just hopeful I don't have an attack tonight and they give me O2 without a fight. Again thanks so much for all your time and wisdom, had to say what it means. ~Ross

I've found a few medical tanks on Craigslist but I'm guessing those won't do me much good as I won't be able to swap/fill them, yes? If I don't have a script and go the welding route I need to go with welding tanks so I can swap them, right?

Thank you to everyone for your thoughts here - I'm the type that needs to know as much as I can about something, for me the scariest thing a doctor can say is "I dunno", and that's certainly what I'm getting now. As for my first appt this week it's with a physician's assistant for a neurologist - not necessarily someone that deals with clusters but it's where I have to at least start. My immediate goal is to get O2 as fast as I possibly can. More questions will come soon I'm sure... ~X

I'm seeing a doctor in a few days so I'm gearing up for the oxygen fight. I may even go get a welding tank tomorrow as I can't handle another 2-4 hour screaming session when the next one hits (I've had 24 hours free so I know it's coming any hour now...) After telling my family about how hard it is to get a doctor to prescribe O2 they have it in their heads that there must be something wrong with it and don't want me to get a tank unless/until a doctor agrees. I find this beyond absurd, we're talking about fucking oxygen here not a narcotic I can get addicted to! So that's the question - is there any real risk or danger? I read about oxygen toxicity but that seems really rare and really easy to prevent. Seems as easy as setting a timer (hell I can even do that easily with Alexa/Echo when I'm screaming) to make sure you don't use it longer than 15 minutes or so (correct?) - so even if it did nothing to help how could it possibly hurt? How could it possibly do anything but save me hours of agony? (BTW I don't mean to be spamming the board, just figured this subject might make it easier for folks in the future)

Again you guys are amazing - thank you.

Rod right now you are my HERO. Should I order that regulator or can it be sourced locally? Any thoughts on tank cost? And if it's like propane will they sell me the first full tank then swap for just the O2 in it later (again like propane)?

New patient here, working to get in with a neurologist (have had CT and MRI, nothing) with one of the goals being an O2 script. I'm looking into masks, regulators, tanks, etc. but due to other issues that's going to take a couple days (and I'm having a 1-4 hour level 10 attack about every 24-36 hours). I saw the BOOOST o2 bottles you can get on Amazon, totally worthless or if you had nothing else would you use one? I've also started the D3 regimen. Thanks so much for any thoughts you have.

This horror hit me 9 days ago, with 6 attacks in that time lasting 6 hours (of level 10 agony) the first time with them getting shorter each time, the last was about 45 minutes. Then it's the 8-16 hour long burn come down to level 4-5 that I can at least tolerate. I've had MRI and CT scans and am working to get in with a neurologist soon (in 4 days). I've started the D3 regimen (last night) and am now working out what I need for oxygen. I've already ordered a non-rebreather mask from Amazon and am about to start calling local welding shops - but I don't wanna sound like I don't know what I'm talking about when I call, so I need advice on what to ask for. Also my biggest question is what's needed to connect the tank to the mask I ordered (said it was standard)? I assume the terminals are different between welding and medical and I'll need something. I looked to try to find some kind of guide but couldn't (if that doesn't exist I'll be creating when I know enough). Thanks for any help you can provide.