Hi!

First off, I am a life-long sufferer of migraines. They are by far not the worst, but the nausea, light sensitivity and the fact I'm unable to move without increasing all the baddies (pain, nausea) together with the frequency of them can sometimes be very debilitating. Although I practically grew up with them, I guess at some point in my life I was ready to make a pact with the devil to make them stop. Yeah, migraines are bad, tiresome, and weakened my joy in life.

But, you know, I was used of them and after my teenage years I learned to adapt to them. Still angry my migraines sometimes make me unable to do everything I want, when I want, but I've learned to say no to certain triggers.

When I was 23, just moved in with my boyfriend, however, a new pain just suddenly announced its way into my life. It didn't creep into my life, it just slammed a door open and stated, very clearly and not be missed, that it was there. I praise myself lucky I have the best boyfriend ever, because we had been living together for one month when it happened. The first time, in January, it woke me up, in the middle of the night, like "HEY! Remember that right jaw you have? I'll make it HURT!". It didn't tell me then why it wanted to hurt me, or how long the pain was going to last. I screamed and cried in agony. I had never had a tooth ache before (not saying I have the best dental hygiene or the healthiest teeth, but I only once had dental ache prior to this and that was with my wisdom teeth). I thought it was just dental issues, me needing to urgently see a dentist and that I was a whiny crybaby for not handling it like the average adult.

I sheduled an appointment with the dentist, but all throughout the day, my jaw region felt sore. I don't remember how quickly I was able to see my dentist, but I remember she filled up every little hole I had, while the pains at night continued and got worse, attack by attack. Every evening and night I'd cry, plead my life, hoping that my atheist lifestyle was all wrong and I could make a pact with the devil to stop this pain. I'd run around, hit everything on my way, hit my own jaw, time and time again. I'd rock back and forth like a mental patient, hoping I was a mental patient and none of this was real and that all I had to do was realize this wasn't real. If the pain feels out of this world, it can't be real and I had to have gone mental, right?

Although my dentist was already at this point at a loss (all my teeth on the right side were now perfectly A-ok again and she started on my left side), I kept on hoping it was just a tooth. Maybe she'd see it the next appointment? Who only knew?

Coming March-April, I had issues with my right ear, too much noise and I heard nothing at all from that ear. As I also had issues with my right nostril being clogged, I went to see my GP, who noticed I had an eardrum infection and one-sided sinusitis. I hoped I had finally found the pain: Must have been the sinusinfection, right? I mean, my nostril, come to think of it, had been clogged now for a while, but with all the headbanging and pleading for my life and boxes of ineffective painkillers, I just hadn't really take note of it. He prescribed me corticosteroids and eucalyptic steambaths. For the first time in nearly four months, the pain subsided. It was still there, but the pain attacks were less. After I'd run out of corticosteroids, the pain started again, so I obviously went back to my GP who, without hesitation, refilled my prescription and sent me to an ENT-doctor.

The ENT-doctor, because I mostly complained of jaw issues, instantly sent me off to the jaw surgeon. Apparently I had a misalignment as well of my jaw and lo' and behold, the jaw surgeon instantly found the "issue": The disk in my right jaw had moved and therefor, I had TMJ. He told me to continue with the hot/cold stuff I'd done the last 5 (!) months now, gave me a gel with diclofenac and told me to not overstrain my jaw. Well, it seemed reasonable it was of "overstraining my jaw". Remember, I had just moved in with my boyfriend? (It honestly became a running gag within my family and friends...)

Soon after, the pain went away. I felt relief. The surgeon was a Saint for telling me what the issue was and had sent me off to a way to fix and prevent further pains! This was June 2010...

I've had similar attacks happen to me again, though. But I ended always blaming myself, for straining my jaw, not having a good pillow, or thinking it was a sinusinfection (why oh why I started to wonder, do I ALWAYS have issues with my sinus if I have the pain?). The first six months was the longest period of attacks, but by far not the most painful. It's currently been over a year since I last had issues, but I had come to accept the TMJ-diagnosis and every recurrent attack as a fault I did. I had had a cold and it was my sinus (I was "clearly imagining that the pain was the same as with my jaw"), it was my pillow, I had eaten too large sandwiches, or stress, how I blamed stress and probably I grind my teeth at night, I mean, I must? Although my boyfriend has never heard me do it and my teeth show zero signs of grinding, I must really grind and clench and whatnot. Despite that I learned techniques not to clench, I must still clench! Whatever...

So, I was sure of the diagnosis, until yesterday, when I for the first time saw a video of a patient with cluster headache going through an attack. What can I say? I cried. I saw myself laying there, banging my head, moaning, groaning, giving up, hating life, hating my head, pleading and begging, kicking air and twisting in agony. It was not just a random guy there, on that bed. It became me, for so many evenings and nights.

Reading up on cluster headaches, the only difference, really, the only difference I can find is the fact my pain originates from my jaw. Now, if it is in fact TMJ, then it appears I have at least some control over my pain and I'd be so happy to hear that. But if the pain starts again, I don't want to waste my time on that again, I want to know if I'd do a good thing looking into cluster headaches first. Trust me, I don't want it if it means I'll go to through that pain -- you can't even call it pain, it's beyond the point of pain! -- again and again.

So, I've tried to look into sufferers of cluster headaches where the pain originates in the jaw, but I find it extremely hard to find information about it and, quite frankly, seeing that video yesterday was very tiresome, because it took me back to that darkness. Are there others here for whom it originates in their jaw? (It sometimes also feels to be originating from my ear as well)

Love,

Me

Obviously you cannot tell for sure, but you consider it might indeed be CH what is causing my pain?

Also, I'd find it weird to now go and see a neuro if I have been painfree now for a year. Or is there a way they'd easily be able to diagnose me, even when I'm not experiencing an episode right now?

Hi Whatever
I remember my first attack. I woke in the middle of the night and my very first thought was "Oh my God - my teeth!!!"  Mine didn't stay in the teeth, it soon radiated to the rest of my right side and settled in my temple and eye, but I do some times (not always) get excruciating pain in either or both jaws / teeth.

The trigeminal nerve is the culprit. In a nutshell it exits the scull at the temple, and splits 3 ways. One section goes across the forehead, one across the upper jaw and one across the lower jaw. It's entirely possible, as in my case, that only one section is affected.

No one here can tell you if you have CH, but there is a blue tab on the left of your screen titled "cluster quiz". Do the quiz and take the results to a neurologist, preferably one who specializes in headaches. There are many conditions which mimic CH but they all respond to different meds, so a correct diagnosis is vital. There are excellent meds available, but you need to know what you have first. Diagnosis relies on trial and error with the meds as there is no definative way of diagnosing, so be prepared to be given stuff that doesn't work to start with. As I said - trial and error.

Many of us were years ( 5 in my case) before we got the right meds. To be pain free for a year is typical of episodic CH. Remissions can last from a few weeks to several years, but you won't know if the meds work, and thus get a diagnosis until you have another attack. Thats why it often takes years to get the right help.

In the mean time here's something you could try. Get some redbull energy drinks. At the very first sign of pain ( don't wait till it ramps up) gulp it down really fast. It's the combination of caffiene and taurine in a sudden hit that does the trick, so any drink with those ingredients will do. Redbull, Monster, Rockstar, etc. It doesn't work for every one but many of us here find it helps enormously.

Please press for a neuro's appointment, it's vital. And let us know how you get on.
Good luck
Maz.

Hi and welcome

As Maz has pointed out there are multiple branches of the trigeminal nerve with one going to the lower jaw.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

And I've read lots of people who have posted about how they have had dental work including having teeth pulled before they get a CH diagnosis, so what you've said doesn't rule out CH but then it needs a headache specialist to really make the diagnosis.

I'm one of those lucky enough to get both CH and migraines, so I'm used to very carefully managing caffeine as it is a strong migraine trigger for me. But I've found that an energy drink taken when I feel the start of a migraine can chase it away, just as long as I don't do it too often. It's a real balancing act where the benefits of a headache diary can really help in identifying patterns and what works / doesn't.

With the neuro, it can often not be easy to get in to see one when you're having your headaches, especially if it is a few months wait to see them, so it isn't unusual for people to see them when they are not getting their headaches. The costs will very much vary depending on where you are in the world. If you tell us your general location then someone local might be able to guide you.

The standard diagnostic criteria for CH can be found at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or . Note that this includes ruling out other causes of the pain, so it is normal to get multiple other tests done including an MRI scan to look for things like cancer and head injuries.

the first doctor I saw, who gave me the prednisone course and booked me in for an m.r.i,  but that was after taking blood.
now he was checking all sorts of things, but I remember when he handed me the script for prednisone, and the m.r.i he actually made the comment, that he'd seen this before !
he actually tested me for inflammation, and from the blood test, it showed I was 3 times over the normal level. He gave me the name of a nuerologist that specialised in headaches. unfortunately there was a 12 month waiting time and I had to try else where.   when I got one of my last blood test in January, I started to shadow and I needed to know where my d3 levels were, I asked her to test for inflammation, same as before, in my bloods it was off the scale.   The only other test ive seen, was at my nuerologist, she has a few cheap bottles of red wine on her side table, I asked her why, and she said that she does try to induce an attack of a cluster sufferer, with a glass of wine, in the hope it will bring one on, so she can do one of two things, teach the patient how to use 02, which she has in her office, or to use imigran nasal or injection and teach the patient how to use.
I found that quite interesting........
colin

Did you take the "clusterquiz" (tab on the left of your screen). I really hope it's not CH, but whatever the outcome, come back and let us know.
Maz.

Sorry, but it does sound like CH. Not every one has all the symptoms, so the fact that you don't have the eye symptoms doesn't rule out CH.  Myself, I get the droopy eyelid but my pupil remains normal. If these things did occur for you , it would only be on the effected side, so would be distinguishable from the swollen eyes which are due to crying.

I urge you to get that neuro appointment ASAP.
Maz.

@Mike:

I am fully aware you are not doctors and even if you were, without examining me physically, there obviously is no telling. But I do value your opinions, you are living it, you research it,... I mean, as a migraineur, I know more about migraines than the average person in this world. Still can't diagnose it, but could definitely recognize its patterns. Let's just say it like this: I could tell a lot of people claiming they have migraines, what they have is probably a combination of tension headaches and egocentrism. 


And I know CH is probably more endurable once properly treated, but so far I only know the pain I went through back then. I also know I lost two jobs because of it (and after that, I just decided to go back to school).

@maz: I will in fact schedule an appointment very soon now. Just waiting to know my class schedule so I wouldn't miss too many classes.

Oh, I'm not letting it take me down. I'm still smiling and living life to the fullest. I am, above all, an optimist.

I had come to terms with a TMJ-diagnosis, despite it not feeling completely right. After the diagnosis, I've had two or three times a few weeks of excrutiating pain that felt like it originated from the sinus (also right side).

For now, I'll just try to write it all down, because I tend to block negative memories and I guess the neurologist will need all the information possible to be able to diagnose me correctly.

Have you made the appointment yet?