Billie Bea

I’m still alive! I was warned repeatedly that day 3 would be the worst day and so far they were right!!! I feel so awful today. And my face is so swollen! But I’m told I’ll start to feel better tomorrow. I’m tired of yogurt, and desperately want a burger!!! I feel a little depressed today in addition to the pain, it just feels like I’ve been in pain for so long, and now I’ll be in this pain for a while, and who knows after that! It feels like I will never be ok again. All my friends are getting married and I’m just on pause, in pain, maybe forever. I’m just like, when will my life begin?? (I’ve also been watching a lot of Disney.) My mom assures me that I will get better but it’s hard to believe that right now! while I have nothing to do but lay in bed and feel sorry for myself I have been thinking about what the neurologist said, and everything I have researched, and everything everyone here has said, and I don’t think I like him after all. so I requested another referral to a different one while I wait a year for the headache clinic. I have that appointment in December. I don’t think it’s a “sinus headache” and while I fully accept that my teeth and the infection were probably causing many of my problems, I think there has to be something else going on as well. Maybe he is right and it isn’t cluster headaches, but I think it’s something. I guess with the tooth issue (hopefully) resolved, it will be easier to figure out. I do have a friend who was getting horrific migraines due to her wisdom teeth so maybe, and apparently tension headaches can also be triggered by jaw issues. But the way it came on in hours long “episodes” multiple times a day is really throwing me off. If it was the teeth wouldn’t it have been 24/7?? My jaw pain was 24/7 but not the face pain. but if it WAS cluster headaches, it seems like the cycle is finally done. I’m still getting some light burning sensations on my cheek/eyebrow, but the doctors are telling me that’s infection or anxiety. But none of that horrible pressure pain. So at least there’s that. annoyingly, when you do have a diagnosed anxiety disorder, everybody wants to blame everything on that! anyway. Thanks for checking in!! Sorry for rambling!! I’ve only had my cat to talk to lol. Hopefully I will be fully recovered soon.

They’re not impacted, or they were not. But the left one is so swollen now, they may have to dig a little for it! I have hope, but I also don’t fully believe it’s just the tooth! I could easily have a tooth problem and a headache problem. It was just so much pain. The dentist I saw was so sure it was just the teeth and infection irritating the nerve, and said that b12 deficiency can also cause nerve pain. but I don’t know… there’s so many coincidences!! I just keep thinking about the timings. Almost every day at 2pm. Seems too specific for a tooth problem. At least I’ll be prepared if it was CH, I’ll know what to do next time. And it won’t be so scary. But I think the teeth know they’re coming out tomorrow because my pain has flared way back up tonight

I will!!! Thanks for reminding me! I’m getting general anesthesia thankfully, there’s no way I could be awake for that.

Well, I went to the dentist and had the CBCT… it turns out I have not one, but 3 abscessed/infected wisdom teeth!!! It’s called pericoronitis, and apparently it’s rare to have it in more than one tooth at a time! So I guess I am special. The one on the bottom left has the abscess, which makes sense because it was my left side that had all the pain. And the upper left one is infected but not abscessed. The right one is just starting to be infected. I should’ve had those teeth out years ago! Anyway, apparently it’s considered an emergency so I am getting them out TOMORROW and I’m freaking out!!!!!!!!! I’m scared of the dentist anyway but to have all 4 wisdom teeth pulled at once!?!? I’m so scared of waking up with nerve damage!! Initially when I went to the er for my pain, they said it was trigeminal neuralgia, so I researched it and I know you can get it from wisdom tooth removal!! And I don’t want it!!! Especially after thinking I had it for a month!!!! It sounds horrific!!!!!!! my jaw has ached this whole time, but I thought it was from clenching due to the pain in my face. But i guess it’s the opposite, my teeth were causing the face pain. And I have had pain inside my ears and throat but I just thought it was all part of it, or maybe anxiety. And when I lay down it feels like all the blood is rushing into my lower jaw, which is why for the whole 3 months I’ve been sleeping sitting up. And my lymph nodes did swell up… and my gums did hurt like hell when I ate but again I thought that was from clenching so I ignored it. There was so much going on!! I had chills but I literally thought that was the cluster headaches! Because I read they can effect your body temperature!! But there was actual pus coming out of my tooth when the dentist showed me, so I can’t ignore that!! It was disgusting!! I couldn’t taste it because I lost my taste from being on carbamazepine for a month! And it’s still not back! Thanks to the er doctors for so badly misdiagnosing me! i kept waiting for the jaw ache to go away when the burning pain slowed down, but it never did.. What gets me is that I went to a dentist at the very beginning off all the pain, because it started with the ache in my lower left jaw, and he told me my teeth were fine! Well, he didn’t really look at them, he did an X-ray and only looked at that. I guess the infections were too small to be seen then. But he didn’t look in my mouth at all, and told me I had no infections. I could’ve prevented all these months of agony! anyway, I’m still not 100% convinced that this was all because of the teeth. I just find it hard to believe that they can cause all the pain I had, especially under my eye. I will be optimistic but keep cluster headaches in the back of my head, so if/when that pain comes back I’ll know what it was and how to deal with it. And I’ll do the d3 reg anyway, because why not! I’m also going to be doing b12 because apparently I am pretty badly deficient. Maybe that was causing some of the pain too. thanks again guys!!!! I don’t know if this is the end of the pain for me.. well, I know it isn’t because now I have to recover from wisdom tooth removal! That will hurt!!! But I may be back in a few months, saying “the jaw pain is finally gone, but the headaches are back!” By then you will be sick of my flip flopping.

I will definitely try to get a second opinion. I’m on a wait list for a headache specialist, hopefully they will give me more answers!

I also feel ready to give up on doctors!! It’s been so hard to get anyone to listen to me. The first time I went to the er for this they told me I could have a brain tumour! And then said I’d have to wait 6-8 months for an mri to find out! I was terrified for weeks until I was able to see my family doctor who suggested cluster headaches. Luckily she is great, just hard to get an appointment with. I swear that er doctor gave me ptsd!! Why would you just jump right to the worst case scenario!?

I do have a referral in for a headache clinic here, it’s an 18 month wait but they’re supposed to be the best! I asked my doctor for the referral even before I saw the neurologist just because of how good they’re supposed to be. 2 months down, 16 to go!! I don’t mind the wait, but I do hope the pain doesn’t come back until after I see them. Fingers crossed!

Yeah, although what he said made sense in a lot of ways, I’m even more confused than before. I just don’t see how I can have a sinus headache with no congestion. Isn’t that sinus headache 101!? Unfortunately it is very easy to manipulate me, maybe that’s what he was doing and I didn’t even realize because he was nice about it! no thankfully, the horrible pain has stopped. My lower jaw aches, and inside my ears for some reason, but that is it right now. I haven’t had any of the burning or pressure pain in about a week. There is a headache clinic here in my city that is connected to one of our “most prestigious” universities and I asked my doctor to refer me there even before I saw the neurologist. It has really good reviews, and is supposed to be amazing for both diagnosing and helping create a treatment plan. It’s an 18 month wait but that’s ok. If the pain comes back before that I’ll just go back to the neurologist and beg for help! I’ll still get the CBCT just because I am paranoid and want to rule out every possibility. I actually looked at my teeth for the first time through all of this and the gum around my left wisdom tooth is very swollen and red, so maybe he is right. I suppose that could be why my ears are hurting, maybe there’s an infection that I just haven’t noticed with everything else going on. But can the bottom tooth cause pain in the sinus area? I don’t know, I suppose everything is connected. The left side is the problem side, but I could just have both a bad tooth and cluster headaches at the same time. I just hope I get answers before the pain comes back (as I’m sure it will).

Hey guys, so I saw the neurologist this week, he was actually pretty thorough and listened to what I was saying. I was pleasantly surprised. but he doesn’t think I’m having cluster headaches, and thinks sinus headaches instead. He explained his reasoning and didn’t just dismiss me; What he said did make sense, the pain is primarily in my sinus area and I don’t get the stabbing pain in/behind my eye like is described. My pain is above and below it and feels like pressure not stabbing. But, it’s so extreme. Like never below an 8 but very often a 10. Unless I’m just like, really a baby about pain. Are sinus headaches that bad?? And can you get them multiple times a day for 3 months!? I’ve never had pain like this before in my life, it was even worse than my appendix bursting! It is true that I didn’t have the eye watering/nose running either, or my pupil going funny, at least not that I noticed. And my eye never drooped, even though it felt like it was, when I’d look at it it was fine. The only automatic symptom I got was that the pain made me feral. I had to pace around and yell and flap my arms during the episodes, like a compulsion. But he said that was probably my anxiety (I do have a diagnosed anxiety disorder but it has never manifested that way before) and the fear and pain making me do that. But I also didn’t have sinus congestion. So idk how I can have a sinus headache with no congestion? And they did a CT of my sinuses and said they looked fine. He said I could have a wisdom tooth on that side that is pressing on the sinuses, or the roots have grown into them, or even an infection or abscess. So I have to go to a dentist and get a CBCT to rule it out. But wouldn’t that show on the ct? It’s all very confusing to me. also, although most of my episodes happened at different times each day I almost always had one at 11am and 2pm and always right after I fell asleep. And they were always 2-3 hours… So I don’t know. I suppose that could be a coincidence. And the fact that they kind of slowed down and then stopped is weird to me too. he did say to keep monitoring it, writing everything down, and that he’d order an mri just to check there was nothing else. And that if the pain comes back to go to him again. He said we could reevaluate at that point to see for sure if it’s CH or sinus. At least he is open minded, and at least I have no pain for the moment. I like that he is investigating every avenue. I don’t know, he was very nice and like I said he did listen to my concerns and answer my questions. I felt heard. But I don’t know what to think! anyway, I might just be a huge wimp about pain I guess!! I’m sorry to all of you with true CH, I feel like I’ve been mocking you now! I haven’t, at least not on purpose! it really was the worst pain I’ve ever had. but I wanted to say thank you to everyone who took the time to read my posts and give advice and encouragement. You are all so helpful and caring, and I felt real hope for the first time during my ordeal when I found this board. The support that you offer here is so important for people who are scared and in pain and don’t understand what is happening to them. So thank you again and wishing you all cozy, pain free days ahead.

Thank you so much!! I definitely want to try the D3 regimen, I have read so many positive things here. It has been really terrible, and I hope I’m right that it is ending. I had a mild but long episode today, after 2 days of nothing so I’m a bit afraid it’s coming back. But at least it was mild, and just one!!

Thank you so much! Everyone here is so nice and helpful and although I wish no one ever had to go through this pain, it is nice to know that I am not alone in it. I do think I will feel better once I know for sure what’s going on. Right now it’s just a lot of anxiety and uncertainty. it’s nice to know that someone has a good doctor! I’ll keep my hopes up for mine, maybe he will surprise me. funnily enough I actually have a wisdom tooth removal scheduled for next month, because I thought that was where the pain was coming from and I haven’t cancelled the appointment yet!

Thank you so much!! I keep waiting for the pain to flare back up again, I guess I’ll eventually get over that Unfortunately this neurologist is not a headache specialist- but there is one in my city that’s supposed to be phenomenal. It’s a 2 year wait but I’m hoping my doctor can get me on the list. I don’t mind waiting. But I suppose I shouldn’t judge the one I’m seeing when I haven’t even spoken to him yet! thank you again for reading and answering!

Hello again, I wasn’t going to make another post until after I had my neurology appointment but I can’t sleep and I’m stressing out about it all. Now that the appointment is getting closer, I’m getting nervous about it and second guessing myself. and the neurologist I’ve been referred to has really bad reviews, so I’m guessing I won’t get any answers from him anyway! I’m ready for him to say that “only men can get clusters” and just dismiss me. basically, I’m desperate for relief from whatever has been happening to me! I don’t have a diagnosis yet, just a family doctor with a hunch and me having done a ton of research myself. I do think I’m having cluster headaches, but of course I could be wrong. This is the first time it’s ever happened to me, so it’s hard to say; I have no previous cycle to compare it to. it’s been almost 3 months now; it started May 10th. I woke up in the night from a dead sleep in excruciating agony and no idea why. It felt like someone had the bone under my eye in a death grip and was squeezing and twisting and pushing and pulling as hard as they could. And then just for fun they also set my eye/brow/under eye on fire. It was this intense, incredible squeezing pressure pain, with the burning as a bonus. I literally can’t even describe it. I actually thought maybe I was hallucinating. It passed in around an hour but I couldn’t get back to sleep. I kept having the same kind of episodes, every day and night. During the day I almost always had them at 11am and 2pm, give or take 30 minutes or so. To the point where I’ll have a panic attack around 10:50 and 1:50 still. It’s how I know the time now lol. There were a few days where they didn’t come at these times, and I would just be panicking and waiting but nothing happened. the pain is… there’s not a word strong enough. It’s so bad. I suppose everyone here knows what I mean. my mom thought it was a severe sinus thing, or maybe a tooth infection that had spread into the blood or bone. it’s just, there’s such a pattern to it. It always starts the same way, with a “buzzing” in my eye brow, that curves around my temple and to right under my eye. Then within minutes it’s the worst pain I’ve ever felt. It feels like a giant is trying to break all the bones in and around my eye, just squeezing as hard as they can, or like someone is inside trying to push their way out. Sometimes it feels like a knife in my eyeball, sometimes like tiny burning hot needles. But it’s that pressure directly underneath my eye that gets me. When it hits 10/10 pain, I think I also feel the burning in my cheekbone, gums and forehead too. But I don’t know if that real or not. They last around 2 hours pretty reliably too. and like I said, twice a day at the same time most days. Not everyday. But enough that I don’t think it can be a coincidence. I’ll get others too, I get 4-5 a day, but they come at random times in the day. And the ones that wake me up 1-2 hours after I fall asleep are the worst. Every single night! I became like a little kid, crying that I didn’t want to go to bed. I started sleeping in my mom’s room, even though I am way too old for that. Although, I say sleeping. There has been very little sleep!! during the attacks, I get super restless and crazy. Like I’m pounding up and down the hallway or around my backyard until it’s done. I try to sit still and stay calm because I’m sure that’s better for me, but I cannot. And I get really cold. I found that an extremely burning hot shower helped. I can’t say whether my nose or eye run, because I am usually just crying. I’ve never checked my pupil either. My eye definitely feels like it is swollen and droopy but whenever I look at it, it looks normal. If there is swelling, it’s minimal. but now, it’s been about 2.5 weeks that they’ve been far less severe and happening only 1-2 times a day. I didn’t even have any today or yesterday. That’s another thing that makes me think it is clusters, because it (fingers crossed) seems to be ending. also, about 2 weeks in I did notice a lump on the back of my neck! I’ve been reading here and have seen the “cluster knot” mentioned. I didn’t even think about that, I thought it was just a stress knot! It has now disappeared. when I first went to the ER for it, the doctor said it was TMJ. I just couldn’t understand why that would be causing pain around my eye, so I went to another ER and was told trigeminal neuralgia, and given carbamazepine and Gabapentin. Neither of which did anything for me, and in fact seemed to make it much worse. the doctor just told me to up the dose and it would work, but that didn’t help so I just stopped taking them after a month. Also, I read about TN and it doesn’t sound like what I’m dealing with at all. It doesn’t feel like electric shocks, and I can’t trigger it with touch or anything. And the attacks last 2 hours, not minutes. But again, I could be wrong. (I won’t ever forgive that doctor though, he told me that since I’m so young, I probably also have MS and that’s what caused the TN. So I have been having major panic attacks worrying over that too!!!!) so I guess what I’m asking is… does this sound like clusters or is it back to the drawing board? I got really depressed not knowing what it was, or whether I’d ever get relief. At one point I was begging for whatever it was to just kill me. I actually cried from happiness reading about cluster headaches for the first time, because it seemed so obvious, and I felt like I had an answer! But there are some things that make me unsure. I don’t get as much pain inside my eye for example, mostly under it and in the brow. I don’t want them, but I don’t want to have to start all over and go through the not knowing again. and does anyone know, can stress trigger a first time cluster cycle? Because I have been under the most extreme stress I’ve ever been in my life, for 2 years straight basically. But it really culminated in May, so it would make sense! also, have I described the pain well enough for a neurologist? I really don’t know how to prepare for that appointment. I’ve kept a “diary” of all the attacks since the beginning of June, with the times and a description of the pain. But idk what else I should be doing. I’m sure he won’t sit and read through my journal. And anyway I have a hard time describing the pain, as you can tell from my post! I don’t even really know what I am asking tbh. I’m just anxious and scared. ok, that’s my midnight rambling done. I’ll try to sleep now! Thank you to whoever reads all this! And wishing you all pain free days.

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

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!

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!