Apparently not CH. Am I just a baby?

[Billie Bea]

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.

[jasmine]

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.

[Bejeeber]

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).

[CHfather]

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.

 

[Shaun brearley]

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 

[Billie Bea]

6 hours ago, CHfather said:

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.

 

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). 

[Billie Bea]

8 hours ago, Bejeeber said:

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 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! 

[Billie Bea]

17 hours ago, jasmine said:

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.

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!?

[Billie Bea]

6 hours ago, Shaun brearley said:

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 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!

[CHfather]

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

 

[Billie Bea]

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. 

[CHfather]

Please remember to ask the dentist not to use anesthetic with epinephrine.  If you do have CH, it will almost certainly trigger attacks.

[Bejeeber]

3 hours ago, Billie Bea said:

now I have to recover from wisdom tooth removal! That will hurt!!!

I'm no expert by any stretch, but if they're not impacted, you can hope for recovery to not be a big deal (mine weren't impacted and weren't a big deal). Main thing I remember was hopping onto the LA roadways in my flimsy VW beetle immediately following extraction while getting hit with a CH attack. But even that was early CH days for me and could have been significantly worse.

 

3 hours ago, Billie Bea said:

By then you will be sick of my flip flopping.

No we won't! We're already sick of your flip flopping!! JUST KIDDING  - here's sincerely hoping the tooth deal could be the entire cause of your severe pain issues, that this will be the end of those issues, and you can end up bidding us all "so long, suckers!!"  Fingers crossed!

[Billie Bea]

51 minutes ago, CHfather said:

Please remember to ask the dentist not to use anesthetic with epinephrine.  If you do have CH, it will almost certainly trigger attacks.

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

[Billie Bea]

42 minutes ago, Bejeeber said:

I'm no expert by any stretch, but if they're not impacted, you can hope for recovery to not be a big deal (mine weren't impacted and weren't a big deal). Main thing I remember was hopping onto the LA roadways in my flimsy VW beetle immediately following extraction while getting hit with a CH attack. But even that was early CH days for me and could have been significantly worse.

 

No we won't! We're already sick of your flip flopping!! JUST KIDDING  - here's sincerely hoping the tooth deal could be the entire cause of your severe pain issues, that this will be the end of those issues, and you can end up bidding us all "so long, suckers!!"  Fingers crossed!

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 

[FunTimes]

Best of luck to you and hope that fixes the problem. If not we will still be hanging out here at the head bangin party for ya. Save your cup, we have free refills! 

[devonrex]

I went around the sinus thing, TMJ diagnosis and so on before arriving with the cluster diagnosis. As for teeth, the only pains I have had in my life to register on my cluster scale were an ear infection I had once where Demerol was pumped into me in hospital, kidney stones and when a molar broke and got infected/abscessed, the trigeminal nerve services the top jaw and teeth as well as in around the ear, so I assume that is why the pain was so intense. 

You could still be having ch as well as the teeth issues. But abscesses in teeth and jaw can be extremely painful.

[xBoss]

On 8/8/2024 at 8:49 PM, CHfather said:

Please remember to ask the dentist not to use anesthetic with epinephrine.  If you do have CH, it will almost certainly trigger attacks.

I guess it is to help with bleeding. My dentist refused to use zero epi but he did cut it way down. It sure does trigger them!

[Bejeeber]

WELL, @Billie Bea?

If you're still on here, hoping for a positive as can be (under the circumstances) report on how the tooth yanking went for you, whilst also adopting a traditional half cringing stance, in case results have been mixed. 

[Billie Bea]

1 hour ago, Bejeeber said:

WELL, @Billie Bea?

If you're still on here, hoping for a positive as can be (under the circumstances) report on how the tooth yanking went for you, whilst also adopting a traditional half cringing stance, in case results have been mixed. 

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. 

[Bejeeber]

59 minutes ago, Billie Bea said:

And my face is so swollen!

Oh not the dreaded swollen face routine - I've seen wisdom teeth extraction swelling aftermaths that included cheeks the size of cantaloupes (!!!), but didn't want to to mention that earlier, in order to avoid unnecessary scares. 

 

 

1 hour ago, Billie Bea said:

If it was the teeth wouldn’t it have been 24/7??

This does seem one of the best arguments that it in fact may not strictly be the teeth.