Billie Bea Posted July 29 Share Posted July 29 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. 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Bejeeber Posted July 29 Share Posted July 29 50 minutes ago, Billie Bea said: I’m ready for him to say that “only men can get clusters” and just dismiss me. Well at least you've braced for that in case it happens, but hey you never know, you might get a good diagnosis out of the deal. Especially if this neurologist is a headache specialist. It's unfortunately true that regular old garden variety neurologists are thought of us as often being ill informed regarding CH. 54 minutes ago, Billie Bea said: 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 bet you've seen that this is indeed some straight up classic CH behavior. 56 minutes ago, Billie Bea said: 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've known some diagnosed CH'ers that mainly get hit in the temple (upper trigeminal), as opposed to the behind the eyeball routine I got used to thinking of as the CH standard. 1 hour ago, Billie Bea said: 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. It sure sounds like how a cluster cycle often ends - CONGRATS ON MAKING IT THROUGH, and now hopefully you'll gain a nice long remission. 1 hour ago, Billie Bea said: have I described the pain well enough for a neurologist? Yep - all they can really go by is a description from the patient, and your descriptions seem fine. Best of luck and results with the upcoming appointment. I'd say don't make too big of a deal out of it - if the doctor isn't right, just set this as another appointment/doctor to ignore, and seek out a headache specialist while you're in remission. They can have long waiting times, but you don't have to be in an active cycle to go in and get a diagnosis. 3 1 Quote Link to comment Share on other sites More sharing options...
Billie Bea Posted July 29 Author Share Posted July 29 6 hours ago, Bejeeber said: It sure sounds like how a cluster cycle often ends - CONGRATS ON MAKING IT THROUGH, and now hopefully you'll gain a nice long remission. 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! 2 Quote Link to comment Share on other sites More sharing options...
FunTimes Posted July 29 Share Posted July 29 9 hours ago, Billie Bea said: thought it was a severe sinus thing, or maybe a tooth infection that had spread into the blood or bone. This is so common, I had a maxillofacial surgeon tell me I had clusters after a root canal did nothing to help me. You never know what type of doc your gonna get until you meet them for the first time. My doc not only knows clusters but also looks at and supports this site. You may luck out and get a clear diagnoses and find out its not clusters (that would be ideal) or you may end up having clusters(not so much fun) but at least you will know what path you will need to take. Your above description sounds like clusters to me for sure, you also seem to have a somewhat upbeat attitude about this knowing the type of pain your having. Keep your head up and just take it one step at a time and we are all here to help answer any questions you may have. 4 Quote Link to comment Share on other sites More sharing options...
Billie Bea Posted July 29 Author Share Posted July 29 5 hours ago, FunTimes said: Keep your head up and just take it one step at a time and we are all here to help answer any questions you may have. 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! Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted July 29 Share Posted July 29 Hi Billie, So sorry to hear that your going through what throughly sounds like a terrible cycle If it makes any difference it really does sound like CH to me. Anyhow I wanted to mention that you could always start the D3 reg in the meantime which has really worked well for many of us. The upside to the D3 reg is that all the supplements are easy to obtain and overall quite good for you and your immune system. I have attached the latest info on getting started for you. I hope you get some definitive information from your upcoming appointment. Hang in there!!! Quick Start Guide - Sept 2023 (1).pdf 1 1 Quote Link to comment Share on other sites More sharing options...
Billie Bea Posted July 30 Author Share Posted July 30 59 minutes ago, BoscoPiko said: Hi Billie, So sorry to hear that your going through what throughly sounds like a terrible cycle If it makes any difference it really does sound like CH to me. Anyhow I wanted to mention that you could always start the D3 reg in the meantime which has really worked well for many of us. The upside to the D3 reg is that all the supplements are easy to obtain and overall quite good for you and your immune system. I have attached the latest info on getting started for you. I hope you get some definitive information from your upcoming appointment. Hang in there!!! Quick Start Guide - Sept 2023 (1).pdf 442.18 kB · 1 download 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!! 1 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted July 30 Share Posted July 30 You stay strong! No matter what we are all here with you! 5 Quote Link to comment Share on other sites More sharing options...
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