Billie Bea Posted July 22 Share Posted July 22 Hello everyone! I am just in the process of being diagnosed, with my doctor believing me to be suffering from cluster headaches. I’m just waiting on the neurologist to confirm, my appointment is in 2 weeks. I have been reading everything I can and I do think this is what is happening to me, but this is my first time having an episode so it’s hard to say for sure. The best indication for me is that they wake me up every night, exactly 2 hours after I fall asleep. It’s so frustrating!! I haven’t slept in 2 months!! anyway, I have a million questions, but I will limited myself to one right now! most things that I’ve read say that the pain is “above and behind” the eye, but for me the worst of the worst pain is right underneath my eye, and beside it. Not the lower lid, but actually beneath it. It goes from my brow, to the corner of my eye and then underneath. Although I have pain in/behind it as well, it is not nearly as bad as those 2 spots. Do cluster headaches cause pain under the eye as well, or only in and above? thank you! Quote Link to comment Share on other sites More sharing options...
jon019 Posted July 22 Share Posted July 22 (edited) ....no particular place on head is definitive..... but anywhere the trigeminal nerve goes is a possible. my pain was a straight red hot poker from temple thru eye, into tooth..... ymmv Edited July 23 by jon019 4 1 Quote Link to comment Share on other sites More sharing options...
FunTimes Posted July 23 Share Posted July 23 I also get pain in the upper jaw below my eye like a tooth is being torn out. It will move around from my ear to upper and lower eye. Welcome to the club.. Read up and ask as many questions as you can think of, We are all here to help each other and no matter what your feeling someone here has most likly dealt with it and may have a trick for you to make it just a little better. 2 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 24 Share Posted July 24 This might help you prepare for your neurologist appointment (and some sections might help you cope while you are waiting). https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Do everything you can to get oxygen. Even though it is the #1 recommended abortive, many neurologists don't prescribe it (almost never for a good reason -- they just don't). And you probably should start the D3 regimen now (there's a link to it in the post I gave you in the first line up above). 1 Quote Link to comment Share on other sites More sharing options...
Billie Bea Posted July 25 Author Share Posted July 25 Thank you all so much for answering!! I’m so nervous waiting for the neurologist appointment, I’ve been reading everything I can and I have a list of a billion questions to ask. And I don’t even really know that this is what I have yet! Quote Link to comment Share on other sites More sharing options...
FunTimes Posted July 26 Share Posted July 26 22 hours ago, Billie Bea said: I have a list of a billion questions to ask Ask here and ask at your appointment. I bet you we will have a better explained answer than the doctor. 1 Quote Link to comment Share on other sites More sharing options...
Billie Bea Posted July 26 Author Share Posted July 26 1 hour ago, FunTimes said: Ask here and ask at your appointment. I bet you we will have a better explained answer than the doctor. You’re probably right! None of the ER doctors I saw at the beginning had any idea what was happening. Knowing what I know now, I’m surprised my family doctor did. I just feel like I shouldn’t ask here yet, until I’m “officially” diagnosed just in case it’s not clusters that I’m having. That way I don’t have to bother you all too much unnecessarily. But once I know for sure, I will definitely be asking a ton of stuff here, I don’t even know if I’ll bother asking the neurologist lol Quote Link to comment Share on other sites More sharing options...
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