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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.

Never hurts to get another opinion. I'm seeing a new Neuro myself - it's been ages because I had pretty much given up on doctors. He ordered two MRIs (says they're the best method vs PET scan, fMRI or CT - his opinion), but the soonest I can get them is September, so more waiting. My situation is complicated because I have chronic daily headaches and hormonal migraines since puberty that can still hit even though I'm well into menopause. The possible Cluster Headaches have been around for many years but no one would touch the diagnosis.

Agree with everything said, I was diagnosed with sinus problems first of all then wisdom tooth on right side removed, still in pain, I'd really go and see a headache specialist, best people to get diagnosed by

I think all of your doubts about the sinus headache diagnosis are justified. I agree with all that the others have said. Let us know what your CBCT shows. Sinus and teeth are such common misdiagnoses of CH. I looked at the Mayo Clinic page about sinus headache, and you don't seem to have had most of the symptoms. Under the heading "Treatment," this is the first thing it says: "Most people who assume they have sinus headaches actually have migraines or tension-type headaches." (https://www.mayoclinic.org/diseases-conditions/sinus-headaches/diagnosis-treatment/drc-20377584) They then go on to talk about treatment for migraine and tension headaches. The characteristics of yours, as we have said, suggest CH. If you DO wind up getting any kind of dental work done (which I think we all would advise against without a second opinion), be sure to tell the dentist not to use any anesthetic with epinephrine -- it's a wicked trigger for CH. I'm gathering that you are not having symptoms now? It's nice to know you can go back to this guy if you start getting them again, but I would also schedule an appointment, as the others suggest, with a neurologist from a headache center if that is feasible for you. Considerate as this doctor might have been, I do not trust him. You know pain. This was more painful for you than a burst appendix, and your restless reaction to the pain was typical CH reaction. In my opinion, you probably have CH. You are not a baby or a wuss. As Jeebs says, get things lined up now, just in case.

I probably have said this before, but there's no harm in starting the vitamin d3-based anti-inflammatory protocol now. Since you're looking just to build up your level over time (to help prevent or mitigate a next cycle, if there is one), you don't have to do anything "drastic" like the loading process. D3 regimen - ClusterBuster Files - ClusterBusters

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!

It's good to hear that this neurologist is nice, concerned, listens and is trying hard. One thing that doesn't help clarify things at all, but I would consider keeping in mind, is that he likely hasn't benefitted from the level of training or clinical experience that would more thoroughly familiarize him with all the ins and outs of headache type diagnosis, so visiting a headache specialist when one is available still seems a good idea. Since this was some incredible pain you experienced, I suppose you could also prepare with dual contingencies and have well researched versions of both CH and sinus preventives ready to deploy if there is any dreaded revisit (we all hope not!!!). FYI I would wager that most of us CH'ers have had teeth yanked, mistakenly believing that was the cause (for me the fruitless dental pursuit involved wisdom teeth removal).

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).

I have had clusters for 40 years. Just made this, going through a bad spell.