Exigeous Posted October 17, 2019 Share Posted October 17, 2019 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 Quote Link to comment Share on other sites More sharing options...
Trent Posted October 17, 2019 Share Posted October 17, 2019 My experience has been only one side of my head, typically in my temple, closer to ear than eye. A real good one will effect my top gum line, and sometimes bottom jaw as well. it can often migrate to above ear to behind ear, down and a bit down neck. Still through all, the temple area is the most painful, radiating out. Mine are always the same side given a cycle mostly right, but once or twice my cycle has been on left side. Some may consider it lucky, but my top gum line above teeth gets sore first, giving me a 5-10min warning that a cluster is coming, the lucky part being the warning time to get to O2. For the first two years my Nuro prescribed my the Zolmitriptan's, and by the time they kicked in, my attack was almost over. So I would take one if I even had the slightest sensation an attack was coming, this created a bunch of rebound's, and overall did more harm than good. It was a life changer to find this board and learn about O2, and busting. 1 Quote Link to comment Share on other sites More sharing options...
jon019 Posted October 17, 2019 Share Posted October 17, 2019 (edited) ...follow the trigeminal nerve pathway....folks have pain in all or some areas....it can and does occur on either side. cannot speak to the pain with pulse....mine and most report unilateral steady piercing/pointed/ burning/pressured... but we all be different.... Edited October 17, 2019 by jon019 Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 17, 2019 Share Posted October 17, 2019 1 hour ago, Exigeous said: She did give me sumtriptan, which I took when this started so it's also possible that's helping. I'm gathering (as Trent suggested) that you might have triptan pills. Those really don't help, unless maybe your attacks are predictable enough that you can take the pills an hour or so before your attack. Nasal spray might work, injections are pretty invariably effective. Side effects vary. As Trent is also indicating, oxygen is what you want. Quote Link to comment Share on other sites More sharing options...
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