(this photo is not mine; I found it on the Internet and it comes close to portraying the pain I’m about to describe here)
(me ❤ )
I have tmjd “cluster headaches.”
And I have been having them for three days now. They are excruciating beyond belief.
They are unbearable.
It is a nightmare but it’s real.
I keep feeling a kind of dread knowing another one is probably going to hit me any moment.
I had one at work last night and it’s the first one I ever had at work. It lasted less than an hour and luckily work was slow and I was alone so no one had to witness it. And while it was severe, unbearable even, it wasn’t the most painful one I ever had.
I wrote about them a while ago but never posted it yet.
Here it is. It may be filled with spelling/grammatical/punctuation errors, I wrote some of it while I was in severe pain and I edited some of it also while I was in pain.
It’s long, somewhat disorganized, and so exhausting.
But it’s my story with a lot of detail and I want to bring awareness to the horror of this rare kind of pain. And bring a sense of hope or comfort to those in need.
I don’t know if anyone will ever read it but it doesn’t matter, it will always be here in case anyone ever wants to.
It’s an agonizing story and it takes courage and strength to put into words.
I have found that courage and strength within me.
About these headaches…..
They, themselves, are not life threatening but they are so physically painful they can drive someone to contemplate or think of suicide, even attempt suicide, even when the person isn’t depressed. They are not common in people with my disorder, TMJD, but not unheard of. I can have them any season of the year but in Fall & Winter they’re more frequent.
Tis the season!
“TMJD cluster headache” Isn’t the diagnosis. Tmjd is and “cluster headache” is another disorder that tmjd can occasionally mimic.
As soon as the end of Summer is giving way to Fall, I’m bound to get those recurring “headaches” which are head attacks not mere aches. I don’t have them really frequently. Sometimes they’re frequent and sometimes they’re not. Usually not.
Tmjd or TMD stands for temporomandibular joint dysfunction. A temporomandibular joint (TMJ) is a joint in our faces. We all have one as long as our body developed properly. TMJ is not a disorder. It’s a joint in the body. TMJD or TMD is the disorder. The D is for dysfunction. So many people call TMJD just TMJ as if that’s the disorder when really it’s just the facial/jaw joint most of us have. I have TMJD or TMD. My jaw joint doesn’t function properly and some nerve is struck or affected by it causing me severe, sometimes unbearable pain that can literally knock me to the ground. Literally.
TMJD, It’s not rare but thankfully it’s not real common that people have the severe pain and complications that I have with it.
It’s not exactly known what the cause is of tmjd but it can be hereditary or brought on by an accident or a blow to the jaw and there’s a nerve involved called the trigeminal nerve. I don’t know what the cause/s of mine is but there is someone with it on both my mom’s side and dad’s side of the family. I have never been in an accident or had a jaw injury. I had it since I was little but not nearly as bad or as frequently as now and wasn’t diagnosed until some years ago and as a young child, I did not have the horrific tmjd “cluster headaches” like now. TMJD is often under-diagnosed because it can be confused with migraine headache disorder and sinus and other problems, and for years I thought it was my sinuses acting up but worse than ever. I was at doctors offices and emergency rooms quite frequently in excruciating ear, head, and facial pain but when I grew up, it was fairly easy to diagnose because I have so many symptoms even when I don’t have any ear/sinus infection/cold.
Sinus problems can trigger a “cluster” flare up.
It can get better and worse. Symptoms can come and go or remain constantly in more seldom cases. Mine are almost constant but not always severe or cause me trouble. Symptoms can fluctuate mild to severe, back and forth. It causes temporary deafness, temporary voice loss, pain(which is my most difficult symptom to cope with) in the head, ears, shoulders, neck, back, teeth, jaw, face, it causes the jaw to temporarily lock open or closed, my jaw doesn’t line up properly and my teeth shatter easily, especially when I’m falling asleep and my jaw clamps closed, it causes a full feeling and other sensations in the ears, a popping, clicking, grating sound/feeling in the jaw, dizziness, ringing in the ears, it can make the roof of the mouth feel strange, and many, many more symptoms.
Tmjd can also feel like Trigeminal Neuralgia(TN), another excruciating disorder, one of the most painful disorders in the world. It’s even called “the suicide disease” because people sometimes kill themselves over the physical pain.
It causes sharp, shock-like bolts of pain through the face because the trigeminal nerve is aggravated. It is sometimes confused with my disorder because they can feel very similar if someone has tmjd very bad like I do. However, Trigeminal Neuralgia (TN) has no other symptoms that tmjd has and TN tends to be more serious.
It can be awkward when I’m physically close to people I don’t know like on a bus and I get one of these horrific shock bolts going through my face, I can’t help but jump and gasp and no one knows why I would do that. Thankfully though, it’s not very frequent.
There’s a rare disorder called Cluster Headache (CH) which is one of the most painful conditions known to medical science. It’s actually said by some researchers to be THE most physically painful disorder in the world. It’s one of the four basic categories of headaches which are sinus, tension, migraine, and cluster. Cluster headaches are said to be the most devastating of all the headaches. It’s said to be more painful than amputation of part of the body without anesthesia, natural childbirth with no drugs, kidney stones, broken bones, and just about anything else you can think of. Women who have experienced both cluster headaches and painful childbirth say they would give birth every single day over having a cluster headache if they could.
I don’t have this exact disorder,(CH), but I have those kinds of headaches and three other(less severe and more frequent) kinds because of my jaw dysfunction which affects a nerve in the head, the trigeminal nerve and affects other parts of the head.
My tmjd “cluster headaches” don’t necessarily come in clusters like for people who have Cluster Headache (CH) where they have a cluster of headaches for weeks or months then can go into remission til the next cluster.
Mine can do that but they don’t necessarily.
Especially in Spring and Summer, I can just have one and not again for months.
There’s no known cure for my condition or for Cluster Headache (CH). And not all treatments are effective for everyone. Some people struggle finding treatment that works even just a little bit.
Cluster “headaches” are very different than migraine headaches and any other kind of headache. Cluster headaches are most common in Fall & Spring. Most people cannot be still or lay down with a cluster headache like with migraine or other pain. There’s no sleeping or resting with cluster headaches. Laying down tends to worsen the pain.
There are cluster headache sufferers who say they would take a whole month of severe migraine headaches every single day, all day over just ONE, fifteen minute, cluster headache that month. A whole month of severe migraine headaches over just one fifteen minute cluster headache!
That’s how bad it is. When someone would choose one whole month of excruciating pain over just a couple hours or even minutes of another kind of pain, you know the other kind of pain is to a ridiculous, unimaginable level.
Cluster Headache sufferers can have less severe pain, called “shadow pain”, in remission intervals. It can still be quite painful.
I don’t know if my condition, TMJD, causes/triggers literal/actual “cluster” headaches, like cause the exact headaches even though I don’t have the actual disorder, or if the headaches just feel the same.
But they are fucking EXCRUCIATING.
Like you just can’t believe.
The nature of tmjd is different than the nature of CH so it’s possible that treatment for ch would not work for me if I tried it.
Someone can have both disorders and they can trigger each other.
I don’t have migraine headache disorder but can have similar headaches as people who have it. They are painful hassles. I usually have to lay down when I have them. They can be debilitating too. In a different way.
Cluster headaches are much more devastating but I can still get up and do things when I’m not collapsing and screaming. I have to get up and do things; I just can’t be still. But with migraine-like headaches I have to lay down.
Sometimes I can probably physically work better with a cluster headache than a migraine one. Because with cluster-like headaches I’m always on the go. And I have to try to distract myself which seems near impossible to do.
People ask sometimes what’s the difference with a migraine and cluster headache. The symptoms and pain level are the difference. And I occasionally see photos and statuses posted by people who are currently experiencing a migraine headache telling everyone about their pain. “This is me laying in bed with a migraine headache!” Not everyone with them can do this but some do. When I’m having one of those dreadful cluster-like headaches I can never even think about posting a status or picture just for fun or to notify everyone, of “me having a tmjd cluster headache.” Totally not happening.
There’s absolutely no desire and social media doesn’t even exist anymore to me when I have one. All I can focus on is surviving one minute to the next. Holding on for my life and my sanity. It’s an urgent feeling. Some people do post videos of themselves having a cluster headache or a photo so people can see what it looks like for educational purposes and to help deepen the empathy of people who aren’t aware of the immensity of the pain. But no one does this for fun or just for the hell of it. One side of the face gets messed up. Whichever side the pain is on. My face sometimes swells up and the eyeball waters and nose runs or gets stuffed.
Nothing I ever felt comes close to the level of pain as the tmjd “cluster headaches.” Nothing.
It’s not completely understood how my condition works. But like I stated earlier, a nerve is involved, the trigeminal nerve, which innervates the TMJ.
These disorders, migraine, tmjd, cluster headache, and TN are all excruciating, devastating disorders that wreak havoc on people’s lives.
People with Cluster Headache (CH) sometimes say they get frustrated when they say they have cluster headaches and someone responds with “I have/had those” when really the person has no idea. If you ever have a cluster headache because of CH or a tmjd “cluster headache” because of tmjd, you won’t EVER forget that experience as long as you live. It will forever be etched upon your brain, scarring you for life. Even if you only ever had one of those headaches in your whole life for fifteen minutes and never again. You would be changed forever.
It’s like nothing else I have ever felt.
Like nothing you can even imagine.
Even some people with my condition, tmjd, who tell me they know what it’s like really don’t because they don’t have the cluster-like headaches. Severe tmjd related pain is not the same as the unbearable tmjd “cluster headaches.” Most with tmjd don’t get them. No matter how severe it gets, it’s not that. Tmjd can cause someone bone deep, soul shattering pain, unbearable pain, I know, I have that too now and again and it’s devastating but it is NOT anywhere near as bad as cluster headaches and tmjd “cluster headaches.”
I have pain that makes me want to escape my body, crawl out of my flesh it hurts so bad and as bad as it is, it’s not to the level of pain that cluster headaches and tmjd “cluster headaches” are.
These headaches can come on suddenly without warning. Last for hours then end just as abruptly as they began. In an instant.
Imagine someone slicing the back of your head open and ripping your eyeball out of its socket.
These kinds of headaches themselves won’t kill us as if our heads were really sliced but they are said to feel like that, like someone gauging our eyeball out through the back of the head.
When one of those headaches attacks me, I can’t see how I ever cared about anything else in this life. I can’t see how I ever cared that someone made a rude remark or looked at me the wrong way. I can’t believe I ever cared what people thought or said about me or what grades I got in school or what job I will have. I can’t believe I was ever disappointed over what now seem to be trivial things. I can’t believe I ever wondered what someone thinks of me. I can’t believe I ever cared about any concerns I once had. I can’t believe I ever thought anything else I experienced, physically, was really pain. Because next to this pain, everything else I felt is nothing. Just nothing.
When one of those is attacking I don’t care if I lose my job or become homeless. I have just about no fear other than fear of that pain. And this pain scares me. When one of these attacks begin I am frightened to the point my mouth dries up and my heart pumps quickly and my body feels the urge to run as fast as I can as if a murderer is chasing me with a pickaxe. And it feels like the murderer is hitting me over and over in the head and eye with that pickaxe, splitting my head, slicing through my brain, but I just can’t die. Like a woodpecker pecking away at my temple non stop, pecking away at the last tattered shred of my sanity.
The pain is so bad it’s like being trapped in a box with nowhere to go, it’s a feeling of panic and there’s no way to escape. That feeling itself is scary. I can’t lay down or sleep or sit or do anything but scream and run. Sometimes I cannot even do that.
When those “headaches” attack, nothing else exists in this world. It’s just the pain and me. The pain is all consuming. It consumes my body, my mind, my very essence. It consumes every square inch of my existence. It’s blinding and terrifying. Blinding waves of despair washing over me. Everything else around me suddenly disappears as if it never was.
They come out of nowhere. Usually waking me out of sleep. There have been flare ups where I screamed through the night for hours ’til my throat was raw and I lost my voice and the sun came up. It’s pure torture and my heart speeds up just writing this. My body wants to crumble to the floor and shake just thinking about it. This pain threatens my sanity.
A few weeks ago, I woke up at 4:54 am with one. Luckily it did not last long, even a minute of this pain is too long, but this lasted less than usual, about 20 minutes, and it wasn’t the worst one I ever felt. But it was bad. Really, really bad. There are no words for how bad it was. But it wasn’t the worst.
None of these attacks are mild or moderate. They are all severe, unbearably severe, but some are more severe. They are all unbearable. All of them.
A few weeks ago when the one hit me, I wanted to run out into the street and crawl under a parked car and curl my body into a ball and hold myself. It’s a bizarre thought, it’s true, but pain to this level can make someone think bizarre things. And do bizarre things. This pain destroys me. It feels as if it can literally drive me to insanity. Not as an expression or figure of speech, the pain is at a level where I seriously wonder if I will lose my sanity. I don’t know if it’s possible to literally go insane over physical pain but I fear that it is.
These headaches shatter me, completely. They shatter every part of my being in every way possible. They shatter me physically, emotionally, every way there is to be shattered. I’m not saying this in a negative way at the moment, even though it is negative. I’m saying it as a matter of fact. They shatter every part of me. Every part of me. All I can think when I’m having one and even when I’m not is that it just makes no sense how such pain can possibly exist. I can’t make sense of it. How can someone’s body experience this kind of pain to this level and how can we keep surviving it? I don’t even know how I do.
To try to put into perspective how severe the pain is I ask someone to imagine the intensity level of having brain freeze. It’s the closest thing I can think of to use as a reference but cluster headaches are worse, still. You know the headache you get for like three seconds if you consume something cold too quickly? Imagine pain to that level and worse for HOURS, not merely a few seconds or even minutes. HOURS! Can you imagine brain freeze and worse for hours non stop?! Or even fifteen minutes?
Imagine how it must feel to have a hot poker stabbed into your eye socket and held there for hours.
Most people probably don’t know what it’s like to be literally stabbed through the eye socket with a hot poker and if they do they are probably dead so it may be hard to imagine. It’s somewhat unrealistic but many of us know what brain freeze is so it may be easier to draw on that.
Sharp, burning bolts of agony along with an agonizing ache, not a regular headache but an ache beyond any headache you ever felt, like a toothache and earache and sinus ache but much, much worse. Like my skull under pressure, more and more pressure like it is about to split. Like it’s about to explode.
It’s just building up as each second goes by.
Like someone poking something through my ear closer and closer to my eardrum until it touches and presses and it’s about to burst. Like my temple being drilled.
Like an explosion in my head.
Like my teeth being pulled with no anesthesia and all the nerves exposed are being pinched constantly with tweezers.
How can anyone handle pain to that level for so long and recurring? I don’t know how I do or how anyone does. And there are people who experience this every day. Instead of having episodes and then remission for a while, they have the chronic kind. Every single day. No remission.
Imagine the pain of your eyeball being scalded with something scorching hot. And someone pouring boiling water over your head and face on the one side. For hours. And then it finally ends. Then before you know it, it’s back.
Imagine a toothache or dental surgery with no pain meds and earache like your eardrum about to burst, multiplied by infinity. Like someone taking a long, sharp, pointed metal object and stabbing your eardrum over and over, relentlessly. For hours.
The pain seems worse than this.
It’s HELL! It’s beyond Hell. Immense sharp burning and throbbing ache. Non stop.
I’m not comparing this to a toothache saying it’s similar, it’s nothing at all like a toothache, that’s just part of it, “toothache” pain.
And it can end then begin again right away! Over and over for days/weeks/months.
Mine usually only last for days but even that is too much. Just one is way too much.
It’s worst than a kidney stone. I know because I had kidney stones. And kidney stones are excruciating. I would take a kidney stone every single day of my life over these headaches any day. It’s worse than post-surgical pain. I know because I had emergency surgery on my kidney/bladder when my kidney was enlarged and almost ruptured and the pain pills wore off way too quickly and the post surgical pain felt unbearable until I was able to take the pills again. It felt like the stent in my kidney and my bladder was made of barbed wire and cutting my kidney and bladder to shreds. Whenever I would move and sometimes even just lay, I felt my kidney and urinary bladder being sliced. And cluster headaches and tmjd cluster headaches hurt worse than that!
Also, even with the severe kidney and bladder pain I did not feel I would go literally insane if it wouldn’t go away. It was hard to handle but I wasn’t bordering on literal insanity. No other pain I ever felt, even the most severe ever made me believe I would go insane if it wouldn’t end.
My headaches used to be more of the severe ache than they tend to be now. The burning/sharp/stabbing gets worse now.
When I am struck with this pain, I am consumed in despair. The entirety of my being is consumed by this monstrous pain.
It’s like I want to run, run, literally run and crawl out of my body to escape the madd horror.
It is the worst physical pain I have ever felt in the history of me. The worst physical pain I will ever feel.
Someone can physically torture me any way imaginable for hours, stick pins under my fingernails, rip my fingernails out with nothing to numb the pain, rip my teeth out, and it won’t feel worse than these “headaches.”
They are the ones that wake me in the middle of the night where I jump up screaming hysterically. My mom gets frustrated and angry saying I have to stop because it sounds like I’m being murdered.
They are debilitating and occur on the one side of my face and head. There are no words to describe it. The word “ache” doesn’t quite cut it.
Sharp, burning/squeezing/throbbing/aching/stabbing throughout my face, eye, head, ear, and temple, sometimes radiating down my neck into my shoulder blade, I can have it on either side on different occasions but it’s usually the left. Almost always the left side. But in the last couple years, I now can experience it on the right. It never comes on both sides at once.
Lately it has been occurring on the right side. For these last three days, it’s the right.
People with Cluster Headache (CH) describe it as feeling like a hot poker being driven through the eye stabbing over and over and over or being held in the eye socket for hours on end. It can also be described as an “ice pick” headache. Those descriptions sound about right, to me.
It’s so traumatic and immense and even when they end, I am traumatized. Just thinking about them later can traumatize someone even when there’s currently no pain. It’s frightening. It’s horrifying to know someone can hurt so much.
For as long as they remain there’s no break in the middle. It doesn’t let up for even a few seconds. It goes on and on and on(even escalating) with no relief til it finally ends until the next flare up which may be right after it ends or not until months/weeks later.
I usually have pain in the middle of the severe attacks(usually mild to moderate), sometimes unbearably severe(usually not though) but less severe than the tmjd cluster head attacks.
Cluster headaches can last up to three hours then end and another can begin right away.
Cluster headaches are also known as “suicide headaches” and for good reason! They drive people to contemplate and even attempt/complete suicide because the physical pain is literally unbearable in the moments they occur. Imagine physical pain that is to a level that can make an otherwise healthy, non mentally ill person consider suicide not because of mental illness, depression, or necessarily because the physical pain is frequent but because just minutes of a kind of pain to that level is just unimaginable, unbearable.
The tmjd cluster headaches I have sometimes drive me to consider suicide just to end the physical pain right then. Not every little thing makes me want to kill myself, this is just so bad. I don’t seriously think about killing myself when I have them as much as I used to though, when they’re occurring. I know better now that killing myself is not the way to go. I will endure the pain until it ends. I will be strong and keep going. I know I can. In my head when it’s occurring I just keep thinking or saying out loud, “I can’t take this anymore” or “I can’t go on, I just can’t…” but now more I often keep telling myself “I CAN go on, I CAN conquer this, I am stronger than this pain…”
I am stronger. I really am. This is what I have been telling myself yesterday, the day before, and today to cope with this. I’m not having one right this minute but I’m still in excruciating pain. I wrote most of this a while ago and just fixing it up to post. The feeling that I feel this moment is brokenness.
When I think about killing myself over this, it’s not like a depressed kind of suicidal when I have those thoughts like “my life is so horrible, I’m so worthless…” It’s like “I literally cannot take another second of this throbbing, stabbing, pounding, squeezing, aching, burning through my face, head, eye, temple, ear….”
It’s like my head being in some sort of torture chamber.
Like invisible bullets one after the other, blasting through my temple.
I’m telling you it’s cruel and relentless. It is callous and no one deserves it.
When I have them I think maybe the pain itself will kill me or knock me out. To be knocked out would be a blessing.
But it never happens.
Instead I am forced to endure it while remaining conscious and fully aware of what is happening to me. When we have these, we cannot possibly sleep or lay still. Almost no one with these can remain still.
Unlike some migraine headaches, they usually come on without warning and unlike migraine headaches, we can’t stay in bed with cluster or tmjd “cluster headaches.” It’s impossible to be still. And laying down worsens the pain. They’re not just an achy, sickly, headache; they’re like sharp and stabbing. Blasting. And for almost everyone who experiences them, they are not accompanied by nausea and vomiting like with migraine headaches for many people. I don’t know what to do with myself when I have them. I keep thinking over and over “How much more can my body endure? How much more am I expected to take? HOW MUCH MORE?!?!?!?!?”
I become furious and devastated. And I literally just don’t know what to do or how much more I can take when I’m having one. I want to run to one end of the Earth and back again, I have thoughts like this that just make no sense when I have these headaches. I feel trapped and I don’t know if I should run outside or run into the street or bang my head against a wall or collapse to the ground or floor and scream. I just don’t know. I have done all of this at one point.
I want to scream and sob and hit things and break anything I can get my hands on. I am in complete and utter despair when I am struck.
Despair. And I can’t sink any lower.
Sometimes when I think about it later, it’s so unfathomable I almost want to laugh out of disbelief. It’s just like how can this be?
Sometimes all I can do is hold on physically. Hold on to a railing, a sink, the bars on my bed or on a bus…anything. Just hold on, literally. It’s all I have sometimes.
If you ever saw me having one, it would probably look like I’m having some kind of convulsions at some points and going completely insane at other points. And you would probably be petrified. Some poor strangers have already witnessed it and probably thought I was insane. And I kind of was. This pain will drive even the most mentally stable person to near insanity.
I sometimes run up and down stairs and pace, slamming doors, screaming, drop to the floor, collapse with my face in my hands, and shake violently, clawing at my face and eye. Smacking things with my hands, throwing my body against things, slapping myself hard all over my body.
I twist my body in ways it’s not meant to be twisted, like one possessed.
And it is a kind of possession. Not a demonic one but we are possessed by this cruel, unrelenting force just stabbing and pounding at our brains non stop, unforgiving. There are much better ways to handle the pain than this. I’m still learning.
I used to intentionally inflict pain upon other parts of my body to try to take the focus off my face and head. It never worked.
Sometimes I was afraid to touch my face for fear of making it worse and I would hit myself in other places or hit other things and sometimes the pain was so bad I would be in a panic just hitting my head and face over and over with my hands or a soda bottle or anything I could reach.
These “headaches” seem to reduce me to half the woman I am. They take away all of my knowledge and awareness of just about everything. All I can think of is how to survive and not lose every ounce of sanity I still posses.
I become some sort of feral being, something uncivilized, a sort of barbarian when they hit.
I become crazed and mad.
They push me to do things I never thought I could do and be something I never thought I could be, think things I never thought I could think, they unleash in me some kind of maniac. I can’t always scream or cry or sob but I feel like it. I want to watch things break and shatter, I want to throw and destroy objects, I want to scream until my throat is raw, I want to break through walls with just my body. I want scream and scream until I collapse into the ruin that was once me, until there’s nothing left of me. I did used to scream through the night until my voice became non existent and my throat hurt and my mouth tasted like blood and I had to gasp for air. But sometimes I can’t scream. I can’t scream or cry or sob. All I can do is sink into my despair and writhe and keep going until it ends. Keep going and going and going. Keep going. I am greater than this pain.
It is unfathomable, incomprehensible. Unspeakable. And it makes no sense. I couldn’t dream up this kind of torment in my wildest nightmare. But somehow my reality has found a way.
This screaming, this pacing and hitting, kicking, slapping, collapsing and taking violent fits, pawing at my head is not uncommon in people with these kind of headaches. This kind of pain and to this level is not at all common but like I said, not completely unheard of. Some people may be tempted to say acting like this is an exaggeration but there’s no exaggerating with this kind of pain. It’s never an exaggeration. It can never be an exaggeration.
And if you have ever felt it, you know.
I can learn to handle the pain better than this, be more calm, and I’m working on it. Some people with CH have learned how to remain calm and find that it helps them.
People say if you’re in so much pain you want to stay in bed. This is true for migraine headaches(and some other pain). They are sickly headaches and staying in bed is required, moving can make them even worse and increase/provoke nausea and vomiting for some people. But cluster and tmjd “cluster headaches” are something else.
The word “headache” is deceiving. There may be an ache involved but it’s not an ache that most people have felt. It’s worse than a backache and pulled muscle, worse than a pinched nerve. It’s not the ache you may be thinking of.
It’s like being in another dimension. Like an unearthly kind of pain. Something that can’t possibly exist in our world but it does. It’s like I want to claw at some walls of pain confining me to another world where nothing exists but an aching, throbbing, stabbing, burning kind of agony, I want to claw and break through to the world I knew the second before the pain hit, the second before my entire world crumbled and came crashing down on top of me. But all I can do is writhe, shake….and desperately hope it will soon end. They are mind blasting, out of this world headaches. They are so bad that if they were dramatically reduced, mitigated to just half the pain they are now, they would still be utterly, hopelessly unbearable. I know this because I have experienced ones which are way less intense, way less agonizing but still quite agonizing and still extremely difficult to handle. It is impossible to be still. It’s just anguish.
Years ago, during one, I came close to killing myself one early morning before the sun came up. I wasn’t depressed. Not depressed at all. I was actually happy before the pain hit. I recently went shopping for new clothes, hats, and stuff and couldn’t wait to try them all on again. Then it came out of nowhere, this cruel, callous, torturous pain that made no sense. I felt it before and assumed it was a sinus complication although it’s much worse. I woke up early in the morning in anguish. I screamed and screamed for hours. I held my head in my hands and held the bars on my bed and I screamed and paced and ran up and down the stairs and thought I was dying.
I fell to the floor screaming and pounded the floor with my hands endlessly until I felt I literally could take not a second more and I decided I had to end my life. Like I said, this is not a depressed kind of suicidal. But it’s still dangerous. I was recently at a doctor’s office for it, back then. But it got worse. I am someone who hardly ever goes to doctors offices or hospitals, especially if I know what is wrong with me or think I know and think nothing can really be done.
I have been to doctors for this pain on various occasions and was told I probably have sensitive sinuses and given nasal treatments which did nothing for me.
I have to be near death or in agony, usually, to go get medical treatment and believe I can be helped. Not because I’m afraid of medical things, I just think it’s a hassle all the waiting and stuff and I don’t always have money or health insurance.
That morning, I looked around at all the stuff that made me happy just a short while earlier, new clothes I bought, makeup, my phone…and it hurt me that I felt I had to die. Especially because it wasn’t a depressed suicidal pain and I wasn’t empty or experiencing lack of pleasure in things. Depressed suicidal is so different. I was happy and hopeful before the physical anguish and despair hit. I truly felt and believed that it would never end and that I just could not endure anymore. I slipped into dark, desperate despair I thought I couldn’t get out of. I got ready to go, my hands shaking, desperate. But I just couldn’t. I couldn’t bring myself to go through with it. So I stopped.
And I woke my mom and told her. Then, I was recently at a doctor’s office for the severe pain and treated for a sinus problem. But the severe pain I suffered wasn’t caused by a sinus condition, I believe it may have been triggered by a sinus cold/infection though. Sometimes they seem to be. Eventually the severe pain ended and I was thrilled. But it soon came right back and I slipped back into the darkest despair of my life other than the despair of depression. My mom called my doctor back and I went in for an emergency appointment. My ear felt like it was about to burst. My head and face felt like they were being crushed and split. My eye felt as if it was being ripped out of its socket. My jaw was locked. I couldn’t scream. I could hardly talk. It took all I had in me not to crumble while she was talking to me. But her voice was distant. It was just me and the pain. Nothing else could get through.
Her conversation with me seemed fractured. I was able to pick up on and understand some things but mostly I squeezed the bed thing I was standing against and tried so desperately not to scream or begin sobbing hysterically or collapse to the floor. A girl in a room next to the room I was in, close to my age back then(about twenty-four/five years old), was in some kind of pain and she was crying and sobbing loudly. She kept saying she was so sorry for crying but it hurt so much. Her crying and sobbing was the only thing I could really understand then. It spoke to me in ways nothing else could. It was the only thing that made sense. I felt her, I felt her crying, her sobbing, her despair. She was describing something to the doctor, in her quivering voice, I can’t remember now but I felt myself in her words, in her voice, in her sobs. I felt sad for her and a strange, small, sense of comfort as well. Like someone understood me, deeply.
Also, there was a small child there that day who one of the medical assistants brought with her to work because she couldn’t find a baby sitter for her child. The little boy was giggling loudly and running around through the office, nothing but pure joy. A sharp contrast to my pure anguish and despair. It brought me a sense of joy even in my agony and I wished she would always bring kids to cheer people up but it’s kind of dangerous exposing a kid to germs and stuff. I found it in me to smile at him. Another small sense of comfort, a faint sliver of hope.
The doctor said there was no ear or sinus problem, no cold, no infection. That my pain and locked jaw was being caused by tmjd. Since I was having a severe episode right there, she got to see for herself, see it in action along with my history.
She told me about the categories of headaches and that it can feel like them all. She told me there’s no cure, no truly effective medical treatment, just home remedies to keep it under control. She said there was nothing she can do but explain things I can do to help myself. I thought the pain itself was going to kill me. I had no idea how I would live with this the rest of my days. I wanted to run out of there and collapse somewhere. I wanted to die. It ended again. Then began again.
Over and over for weeks. I struggled so hard to think about how I would survive.
I had my first very severe attack when I was twenty-four years old(although I had much less intense but still very bad ones before then, I remember waking up screaming in the middle of the night when I was fifteen years old with sharp stabbing, burning/achy pain on the left side of my face/head/eye and I cracked my head against the wall in my room near the doorway, because the pain was unbearable, I laid across the steps in my house with my legs and hands flailing into the night, moaning and writhing, and wanted to wake my mom, the next night I went to an emergency room and embarrassingly freaked out in there, throwing myself on the chairs, screaming, shaking chairs screaming about my sinuses while a few people watched in horror and disgust, clearly believing I was exaggerating. The doctors thought I had sinusitis and gave me antibiotics even though there was no sinus pressure or anything they could see like that. I had a runny nose and pain, watering eye on the left side, symptoms which are common in cluster headache, (CH) and sinus colds)
When people hear “sinus pain” it probably doesn’t seem real bad but this is unbearable and has some things in common with sinus pain. I never heard of it back then so I assumed it was my sinuses.
Four years ago, at age twenty-four years, I had no clue what hit me. It was a life-changing experience. I thought it was some complication of a sinus condition because I had no idea what else to think.
I never heard of cluster headaches back then or Temporomandibular Joint Dysfunction /TMJD. And I had sinus colds since I was little and I know certain sinuses are in the face and can affect the head so I assumed it was something to do with that and that the burning in my eye and stuffy/runny nose was an infection. I remember writing on Facebook after the first very severe attack, that my life has changed and I never knew sinuses can hurt so much and that I truly never knew what pain is until this, that it completely obliterates anything else I ever thought of as physical pain.
I remember thinking that about post surgical kidney pain before I came to know the true horror of cluster/tmjd head pain.
I tried everything I could think of for sinuses, nasal spray, saline solution, all kinds of prescription and non prescription meds. During tmjd cluster attacks I would spray bottles and bottles and more bottles up my nose all night long hours upon hours, before I was diagnosed. Sometimes the burning seemed to get worse. I took handfuls of Tylenol, over the counter analgesic stuff, prescription pain killing pills that someone gave me, sleep medicine, oragel for my teeth, sore throat spray to try to numb everything, icy hot all over my head, neck, face, , vicks vapor rub, everything. I rubbed neosporin with pain relieving properties all over my teeth because they were aching so badly.
Nothing worked. Nothing touched the pain. Nothing kills that pain.
Pain like that doesn’t sleep.
Doctors often don’t like to prescribe pain medication for chronic pain conditions and I understand why, because many people struggling with addiction try to get them. This isn’t anyone’s fault in particular, it’s just how it is. Doctors usually want to do the best they can and people with addiction experience a heartbreaking struggle and they’re desperate. I know what it is to be desperate. Pain pills don’t work for this anyway. Except maybe to take a bit of the edge off sometimes. But I would take that over nothing during these attacks. I feel shattered by this pain.
I am so desperate and in complete despair when a headache like this or even ones not quite as severe but still unbelievably painful attack me. It’s so unbelievable and so mind blowing that something like this can exist.
I don’t understand it. And my insides shake at the knowledge. I have thoughts about and triggered by this pain that make little or no sense.
I never knew someone can hurt so much. I never knew pain to that magnitude can exist in someone. It doesn’t make sense to me how it’s even possible. I don’t know how anyone can experience pain like that and come out of it still standing. It makes me realize even more how fierce the human spirit really is, how fierce our will is. How truly fierce and strong we can be.
Even if I only ever experienced just one of those “headaches” and never again, my life would still be changed. Not in some tangible way, not necessarily in an inspiring way or in a positive or negative way or any way that can be explained in words, not a way I’m always conscious of, necessarily, those things come along with it but those aren’t the only aspects. It’s just that knowing this kind of pain exists in this life and especially knowing it directly and intimately, changes someone forever.
It shifts something inside me.
In some kind of quiet way, it changed me.
It’s heartbreaking to think how much suffering some people are forced to endure and there are those who have this pain frequently with very little or nothing to help because nothing works to stop it.
You may or may not know pain to such a level as this but maybe you can use your imagination to try to get some kind of idea if you never felt this. There’s no way to come close to really knowing though unless you felt it. It’s truly, literally unimaginable to those who have no clue.
It’s not as much the sensation or kind of pain you won’t understand but the magnitude or level of it. That is what no one will ever truly understand without feeling this. The pain level is indescribable. That’s why it’s extremely difficult to draw on your own experiences to empathize. No matter how many agonizing toothaches, surgeries, migraine headaches, kidney stones, pulled muscles in the neck and back someone has experienced, nothing can be used as a reference point for the level, extent of this pain. I don’t know how pain to this level doesn’t knock us out but it doesn’t. But you may get a fraction of an idea of what some aspects are like. Think of the worst physical pain you have ever felt. Maybe a backache, a toothache, post surgical pain, being burned on your skin by coffee spilling on it or soup…..imagine that pain coming out of nowhere throbbing for hours on your head and face and nothing takes it away.
And it’s not over an injury right then or an illness. It just is.
Your entire life comes to a sudden halt, everything you knew just a second before is gone and you are left chained to a world of unspeakable horror. Imagine.
And your basic empathy that most of us are gifted with can allow you to understand in certain ways that we can all understand each other when we tune into it.
I think we can all relate to one another even if we don’t all experience the same thing, most of us have pain that is less and worse than someone else’s but less or worse doesn’t matter. What matters is underneath we’re the same. We are capable of empathizing and imagining. We can’t literally know each other’s pain because we are our own selves and we each have experiences that are unique to us even if we experience the same situation as each other.
I never cared, negatively, when someone who has no clue what my pain is like for me says to me “I know how you feel” as long as the person is saying it in a genuine comfort -intentioned way, a way to identify with, to connect. The person is trying to bridge a distance and have our experiences become one. And I feel beauty in that.
I don’t like when they say they know how it feels in an abrupt, careless way, just to say something or if they say it to act like they know and handle it better.
People say you can’t know how someone else feels if you have never experienced it and while there’s some truth to that, for sure there is, people often exaggerate that notion, in my opinion. There are different ways, degrees, and depths of knowing or understanding someone else’s pain or pleasure. It’s a little something called Empathy which is an ability, unless we’re a true psycho or sociopath or whatever(which most of us aren’t), that we all have to connect with and relate to each other.
Some have a deeper and a more developed ability to empathize but we can all tune into it to some degree.
While I would never say “I know how you feel” to someone or believe that I know exactly how someone else feels, I am not hurt by a truly well intentioned person saying it to me.
The first most severe tmjd cluster headache I experienced (and all the ones after)had me reeling.
I ran out of the house at 5:30 in the morning on a cool November day, after a sleepless night being ripped out of my sleep by something pounding and stabbing the side of my face, screaming all the way to cvs, not caring what anyone thought when they looked at me. It was super early so most people were in cars, probably on their way to work. I remember wearing a light pink, sleeveless shirt. My long, waist length hair flowing in the gentle breeze. I ran screaming for pain pills in the back of the store, knowing they can’t just hand over pain pills but desperate enough to implore for them. I had to hold onto things to keep me standing. I shook things on shelves, banging my hands on the counter, wringing my hands. I couldn’t remain composed.
The immensity of the pain then was unlike anything I have ever felt.
I keeled over in the middle of the pain reliever aisle.
I told the people in there I’m having some kind of bad sinus complication so they gave me a box of things for sinus pressure that they just pulled off the shelf right there like it was that easy.
I hysterically told them that that won’t work. That my pain is indescribable and it needs to end now.
I yelled to please, please give me something to make it stop right then and there. I pleaded so hard. I fantasized about jumping over the counter and ransacking the shelves for prescription pain killing pills. I was desperate. But there wasn’t much they were able to do. A couple of workers came over trying to talk to me but I couldn’t stand there and talk. I paced up and down aisles. I ran in circles around the aisles. I hit myself in the head. I pinched myself all over. I wrapped my shirt around my hands and collapsed at the knees.
I wanted to turn myself inside out.
I don’t think they have ever seen anyone act that way before. And that wasn’t even the worst of it.
When I think back now it reminds me of that scene in the movie “Liar Liar” where he kicked the shit out of himself in the men’s restroom.
“I’m kicking my ass!”
That scene is funny, hilarious. And I’m even laughing at it now. 😀
But as easily amused as I am, as much as I laugh at everything and myself even over things that were very painful before but later seem amusing, I cannot laugh at this memory of me.
There’s not an ounce of amusement when I think back to that day or any other day experiencing that pain. There is no laughter there. There’s no amusement thinking of all the others who suffer similarly, everyday or in episodes that come and go.
I did not want to scare the piss out of anyone but my pain was immense. Cluster headaches and tmjd ones can look like a serious medical emergency but they are not life threatening as long as the person isn’t about to attempt suicide because of the pain or driving or in any other situation that can make them dangerous.
I wanted to scream through the store that this isn’t mere pressure in my sinuses, that no one understands, this is pure anguish, an agony I never knew can possibly exist in this life.
This is what Hell is. If Hell were a real place, this would be it. It was destroying my life, destroying me completely because of the violent, vicious intensity of it. I was in a full blown panic. People were staring, I did not care. All that existed then was the throbbing, stabbing, aching pain in the side of my face/ear/eye/head/temple. I couldn’t see, hear, feel anything but pain and panic. I was blinded by the violent pain. Deafened by it. Throttled by it.
I had no idea what exactly was happening to me and I feared it would never end. I wondered if it was an infection spreading throughout my head and face.
And all of this is an understatement. There are no words to properly convey the agony to the degree it really is. And no words can ever be an exaggeration. No word that I can think of bears enough weight to convey the true extent of the pain. Not even the word “agony” is adequate. The word “torture” does no justice.
And none of this is over-reacting. Different people handle things in different ways. Some things that make some people collapse and yell out may not have that effect on others. And some people do over-react to some things. But there’s no over-reacting with this. Pacing and hitting and self-aggression and screaming are the result of the unbearable pain and panic. Even strong people with cluster headaches and ones that are related to tmjd often have no choice but to act out in some way like pacing, rocking…
Some people pace, some thrash and kick and punch, some throw things and attack themselves. Some find better ways to cope like trying to hum or run in place, anything instead of the screaming and hitting.
But for people who handle it worse, it’s not over-reacting. This pain is bad.
Some people collapse with their head in their hands and scream and sob. Some can’t scream, sob, and cry till it’s over. The aggression is self-aggression, not violence against anyone else.
They don’t make me want to attack any living thing, in fact, when I’m experiencing them, I often think of the others who know my pain too well and my heart breaks and I want to take it all away.
The pain is immense and the agitation and restlessness is overwhelming. If I think of the strongest people I have ever met, both physically and emotionally, there is no doubt in me that they would react similarly or have similar thoughts if they were forced to feel this pain to this extreme. There is no laying down or resting. I read that over ninety percent of people with cluster headache syndrome are restless and agitated during an attack like I am with my tmjd “cluster headaches.” Being still, laying down often exacerbates the pain. It’s just not possible. We can learn to remain more calm but when people do not stay put and remain composed, it’s not over-reacting.
Whoever says that, clearly has never experienced something as horrific as this. Experience it first, then see if you can tell someone like me to stop exaggerating.
Experiencing something like this then telling me I’m over-reacting, is somewhat more acceptable than someone who has never felt anything even remotely as painful and having the gall to say I’m over-reacting. I’m sorry but no. It’s bullshit.
I lose weight like crazy when I have these headaches. I am naturally a very thin girl but I consume a lot of junk food and while I don’t put on much weight, I’m still not as thin as when I don’t eat as much junk food. I don’t eat for days when I have them and in just two days I lose a noticeable amount of weight. I lose weight very easily but I don’t put on much weight no matter how much I eat day and night. And people ask me why I am losing weight like this and I try to explain but of course no one understands because who understands this? I don’t even understand it! I seriously have had people tell me they would love to have tmjd or cluster headaches!!!!!! So they can be motivated to not eat and lose weight!!! People have told me they are envious of me for having a good way to get thinner! I don’t know if I want to laugh or cry when I hear this.
When I have these headaches there’s really nothing to help me reduce the pain so I have to find ways to cope. Sometimes I try icy hot cream or patches or unisom sleep pain reliever desperately hoping to touch the pain somehow mitigating it even just by a fraction or help me focus on another sensation somehow. It’s often futile. Nothing touches it. I have a stress ball I squeeze to try to focus on that sensation a bit. I have a plastic massage thing I press into my face and head. I also found that walking and other physical movement helps, not to lessen the pain but to help me endure it better.
There are better ways to handle these head attacks than freaking out, destroying stuff, screaming….It may take some practice and a lot of strength and courage but there are better ways, some people are able to remain more calm and find that it’s better that way. I’m scared to remain calm and always think it will make it worse or that I will go insane and not find my way back. It’s frightening. It’s possible to move physically but not get hysterical. I’m getting better with it. The last three days I think I did very well. But even though they were unbearable and devastating these last three days, they weren’t as bad as others I have felt. Very, very excruciating though. I wanted to scream. I really did. I tried to consciously think, how can this teach me, what can I learn, how can this strengthen me and help me be more mindful in general….it’s not easy and it’s so terrifying but I managed. I am managing.
I have no choice but to endure these. They are thrown at me without my consent. What else can I do? I can break down and scream and sob hysterically and I can also be strong and know I can go on. It’s ok to collapse but I will always get back up.
I read one suggestion to help people cope with cluster headaches is to get a basket filled with different kinds of material strips like velvet, satin, wool…and just mindfully feel each one til each headache ends. I think this seems like a good idea.
I have an aversion to touching soft material. I find it disgusting rubbing on it so it’s out of the question for me to fill a basket with soft material strips but I can find another object to feel the textures of. If rubbing that material would take the pain away or lessen it, I would be rubbing it day and night.
I also have Buddhist Mala beads to recite positive, life affirming affirmations or quotes for each bead to help me cope. The point is to touch each bead and think/say a positive thought and meditate upon that quote or affirmation. This helps me focus on that and not just the headache. It’s so difficult though. But it helps to instill hope in me. It’s something positive to engage in. It’s a way to cope.
For other kinds of pain related to my condition, I practice guided imagery and mindfulness meditations for pain relief and gratitude but for these tmjd cluster headaches, I can’t, since I can’t hold myself still.
I thought my first attack was bad. And it was. But since then I have experienced even worse ones. But now I know what they are and that the way I handle and have handled them is actually commonplace in people who have similar headaches. Some of them break their own bones while hitting things because of the anguish. Like me, they wake up screaming, they have strong urges to bang their head against walls and rip their eyeball out of its socket. They scream and sob and cry and pace and shake on the floor, hitting their head over and over. They shake their hands and want to turn themselves inside out as this hand-wringing pain throttles their entire existence. I know.
When it finally ends, the physical and emotional exhaustion kicks in and I can sleep for days if I let myself. I am wrung and shocked and dazed.
But so thankful that it’s over.
Sometimes I feel especially elated for days when they end. And sometimes I’m just in a state of shock or a fog for a week.
It’s frightening and the most physically painful experience of this life of mine. Nothing can hurt me more.
Sometimes I wake up thinking about those head attacks even when I’m not having one right then, even when I haven’t experienced one in a while. Or I lay in bed at night wondering how have I survived each one and how will I survive the next one. And the next one. And the one after that one….but I know I can.
It usually, (almost always), happens at night after I’m already in bed/asleep but it can and does happen anywhere, any hour. It feels like my eardrum is about to explode. And I feel so broken just thinking about it.
I remember having an attack some years ago in Pizza Hut one afternoon, standing in line. I had one the night before. I was waiting for food with my mom when it struck the left side of my face. I ran out before I could make a scene. I ran around to the side of the building and collapsed onto the ground. I was so overwhelmed in despair. I had no clue how I was going to survive what was coming to me. I knew it would soon escalate as these headaches tend to do. And I held my face in my hands laying in a ball on the ground in front of the big glass window. I got up and ran around in circles, back and forth, hitting walls and the ground, trying not to scream and become too hysterical, I kept thinking how am I going to survive this for as long as I live when it keeps coming back.
This was back when I feared I may actually kill myself during one, shortly after I was diagnosed, not because of depression.
This is when my depression started to get generally much better and I was so happy, finally happy to be alive.
I wasn’t depressed. My suicidal inclination was only because of the unbearable physical agony and only when the physical torture was currently happening. It’s torture. I don’t want to kill myself when I have them because they will keep coming back; it’s because the moment they are occurring is so unbearable. It feels like it will never, like it can never end. And like I just cannot take another second of it.
I know I won’t kill myself now. I wasn’t depressed when I seriously considered killing myself while experiencing the headaches but I wasn’t as strong as I am now. I realized this more last night at work during an attack.
It’s moments like this, being attacked, where I truly cannot care what people think of me at all or care about anything at all. Under any other circumstances I would have been embarrassed acting that way but as I have previously stated, pain like this unleashes something in me, something that knows no bounds, something that can go days and days without sleep day or night, something that roams the night restless and agitated, something that wants to break down walls, someone who freaks out in front of people without an ounce of embarrassment about what they must think of it. Anyone and every single person who has ever known me knows how calm, quiet, laid back, easy going I am, how I handle things more smoothly and calmly than most people, how nothing much gets to me, how I remain composed, especially physically, and patient in all kinds of stressful and distressing situations, how I never lose my temper too much, like ever, even people who just meet me can often automatically sense my calm, shy and quiet and gentle nature, my warmth and light. Every teacher in school would tell my mom that, all the kids who took the school bus with me would tell my mom, all the people at work were shocked how calm I was after I had a gun held to my chest and my life threatened by a criminal who wanted to steal money.
So for me to act like this? You know it’s something. Something indescribable, something horrifying, something devastating.
After the incident in Pizza Hut, I went home and took prescription pain pills that weren’t mine that someone gave me. Nothing happened. The throb remained.
(this is not my photo but it’s cute isn’t it?! :-D)
Later I took them again and they took the edge off but it quickly returned. I sat in my bed alone in my house, feeling as if my life was over. My face swelled up on the left side because my condition can cause that. I was afraid to touch my face so I kept pinching my legs and squeezing the bars on my bed. I hit my head over and over as quickly as I could with my hand. I screamed hysterically. Hitting myself again and again and again.
It was better then because I lived in a different and bigger house where it was easier to scream without people hearing well.
I stayed awake for four days straight with it, not one second of sleep til the worst of it finally ended after four days. But I stayed in severe pain for twelve days straight. I stayed positive for the most part. As positive as someone can in a situation like this. I did not let it depress me.
I knew that I was able to handle it because of all the years of depression that strengthened me. It turns out depression is good for something! 😀
I found beauty and joy in every day, anything I was able to grasp onto. And I continue to even when it’s incredibly painful.
There is an incredible and terrifying loneliness that stalks me sometimes when I’m up at night battling a tmjd cluster headache. Knowing all the world around me is fast asleep while I’m up pacing through rooms trying hard not to scream and kick walls so I don’t wake my family or the neighbors. It’s just me. And my hellish nightmare while I’m wide awake.
(this photo is not mine – it’s Edvard Munch’s The Scream)
Pain disorders are horrifying and so devastating and I would never want one for me or for anyone else ever. But when we have them, we can’t change it. All we can do is let them strengthen and teach us and just hold on. It’s difficult to allow that but it can be done. While there will be moments of dark despair, we can learn to live in light and love in general. And that’s what I do. Life can be loved even through the pain. And it’s important to make a conscious decision to go all out looking for everything to love when pain is taking over. It’s nearly impossible to do that with a cluster/tmjd cluster headache going but it’s important to remain positive in general.
We can choose not to let pain conquer us. And to get back up when it does conquer us some moments. It can ravage our body but we don’t have to let it ravage our spirit.
It’s so difficult and scary but even with all of this pain, I am generally a very happy girl. It does get the best of me occasionally and I am so broken. But I still find strength and joy and courage and happiness in me.
I don’t believe that it usually matters whose pain is worse. What matters is awareness, empathy, compassion, education, understanding, caring.
I don’t like pissing contests, like my pain is worse than your pain and this kind of pain is worse than another kind pain and this painful experience is nothing next to this one and….I can’t stand that. I see/hear it around and it’s uncalled for. There’s usually no need for comparisons except sometimes to explain things and to educate, to get people to understand, to put things into perspective like I’m doing here, not to have frivolous contests to see who is more of a victim or has it worse or to see who deserves more sympathy.
While those head attacks lead me to think of every other painful experience I ever had as “nothing” next to that, I wouldn’t think that someone else’s painful experience is nothing. It’s just that for me and others who know this pain, once we know it exists, nothing outside of it we ever felt comes even close to being to that level. Someone can hurt less and still suffer.
Everyone deserves compassion and empathy and even if you have never been in serious pain, you very likely have felt some kind of pain and it’s still pain. No one’s experiences should be invalidated, in my opinion.
Some things, like cluster attacks are way beyond excruciating to everyone who experiences them. But there are other things that may be very painful to one person and not another and something that appears to be less painful than something else, may not be. We can’t always judge correctly for how something looks or sounds or how something is to us.
And we can draw on our own experiences no matter how different or similar they are to someone else’s, to empathize with each other to some degree.
When I am experiencing a tmjd cluster headache or even less severe but still unbelievably excruciating pain, almost nothing else in the world matters to me anymore. Other problems are no longer problems, I have almost no other desires but for the pain to be dramatically reduced or end, my pain and everyone else’s. I know when I’m having one of those that if I could I would take away everyone else’s head/facial pain even if it means I have to endure even more of it and bear the burden for all of us. I would. I don’t want to imagine the terrible pain the others feel who have this. All the trivial little things I once thought were something are now nothing. Sometimes when my tmjd pain becomes nearly unbearable, I manage to notice even more how very beautiful the world around me really is, how blessed I was/am, how much beauty I was overlooking before the massive pain hit and consumed all of me, before it became unbearable. Before the pain reaches the point of utter, ridiculous madness to where I can’t notice much of anything else, I notice even more than usual, little things, like the moisture on soda and water bottles and cans, the city lights and sounds in the streets, cars and trucks, and people laughing, the sounds of fans swirling…beautiful things I sometimes overlook and am desperately sorry for it when the severe pain hits me hard. I can’t take pleasure in them to the depth that I can when I’m not in that kind of pain. But the pain triggers me to notice them. I am able to tap into these thoughts and feelings even when a headache isn’t attacking but the attacks remind me even more. It teaches me to be more thankful. Each one is another reminder. Not that I want these reminders but since they’re there, I will use them to my advantage.
And when I experience something unpleasant, I sometimes remember to stop and think but at least I’m not having a cluster/tmjd-cluster attack. It doesn’t always cure my problem I’m having but it helps me have a better attitude/perspective.
I noticed that after I have these headaches, for about a week after they end I seem to not care as much about things and especially what people think. I don’t obsess over what people think anyway but to some extent I care, but right after a “cluster” flare up it’s like I can’t even bring myself to care at all. For example, I don’t always pay attention when I’m walking outside and sometimes I don’t see someone I know and don’t say hello then realize after the person walks by and I always care thinking the person probably thinks I’m rude. But after the headaches it’s like whatever. Let that person think that. I develop a kind of “take no shit” attitude towards life like “fuck it or don’t give a fuck” attitude for a while.
And when I get physically hurt no matter how much it hurts it’s almost nothing to me. One day my finger got slit open and slammed when a milkshake machine fell on it at work and was bleeding and bruised and swelled and I couldn’t even care because a headache like that just ended days before.
If I never experienced those head attacks, I would still care about stuff like that.
And more recently, scalding hot soup spilled on me and burned the skin on my leg and it hurt so badly, a somewhat similar pain to the tmjd cluster attacks, but nowhere near as bad, it burned worse than hell, then it blistered my skin a bit and the pain was bad and was just going and going but one of those headaches ended a few days before and the burn pain on my skin was just nothing even though it really hurt. It hurt but I had not as much of an emotional reaction to it as I would if not for those head attacks. It was like a kind of emotional detachment to the physical sensation. It’s like I can handle anything now.
Anything. And it’s not a completely good thing.
I’m not even writing that to be inspiring or to be positive.
It is good in a way but it comes at a great price. A price that’s not worth it but since I had no choice in the matter, I will look at the bright side. That, I do have a choice in. And that is inspiring.
I’m still kind and caring after that but just not as caring in some ways about certain situations. I start to have a slightly altered perspective and become more forgetful because of the psychological consequences of experiencing such wretched pain.
And an interesting thing is just imagining those headache attacks even when I haven’t experienced one for a while can lead me to adopt that “fuck it” attitude again like everything in life is just so trivial compared to those headaches. And it’s like just about everything else comes second to that pain.
And it’s interesting to see the world going on as usual with everyone just going about their lives like nothing but I’m stuck frozen in the knowledge that some kind of monstrous and hideous pain exists that most no one else in this world knows about, at least not in an intimate, direct way. Way too many people do know this pain I speak of. A very small percentage but just one person is one too many. But the fact that it’s so uncommon that most people probably haven’t even heard of it and that it’s so bad no one can even imagine really, it makes it feel like a secret pain. A secret world only very few people have access to. Access that no one wants.
Less than one percent of people in the general population have CH. Many go undiagnosed or misdiagnosed for years. It’s often mistaken for a sinus problem though it’s infinitely worse.
Many more people have tmjd but almost never have these headaches I get and usually have no other serious complications.
Almost everyone knows physical pain, even severe pain, probably. Breaking a bone, pulling a muscle, banging your toe on a table leg, stepping on a thumbtack or nail with no shoes….but this head pain I write of is like another world, a world most people have never entered and I desperately hope never will.
I so desperately want no one to ever feel this that I would take on more of these headaches just so someone else can be spared if that’s what it would take. I don’t want to imagine someone else ever feeling this. Ever. It makes my skin crawl to think of.
Sometimes when I’m outside I look at all the people on the streets around me and I think of cluster headaches and I wonder “does he know what they are?” “does she knows this pain?” “would they ever understand?” And I’m sure they don’t and never will and I feel a sense of protectiveness and a sense of heartbreak knowing that any one of those innocent people can be struck at any moment with this horror.
Just like me.
It’s not likely but I just think it. And I want to stop it and shield anyone I can against this agony.
I feel it tugging on my heart in my chest as I write this. Just knowing this pain exists just stirs something in me I can’t explain, something I can’t get over. I feel my heart sink.
I’m not a victim of this pain or a victim of my body. I am blessed with a life and this beautiful body and I wouldn’t give my beautiful life or my beautiful body up to have a different one instead, this is just something that comes along with me being given life. I choose this life over no life. If I had a choice to be someone else and not have these headaches I would not. I choose me. I choose this life, the beautiful one I have been given. I get angry, devastated, I feel that no one should ever have to endure this. It feels so cruel. But I see beauty and love and hope and joy glimmering through my darkness.
I see light. Light through the blinding pain.
I want this pain to never come back to me.
And I definitely complain about this and there are moments I definitely feel sorry for myself. I won’t even pretend like I don’t. I piss and moan about it, I get angry, devastated, furious.
And that’s really ok.
But I don’t make a habit of dwelling on the negative or bitching too much. I don’t usually feel sorry for myself and wallow in it.
Suicide is not the answer to these headaches or anything else and it will never be the answer. We are strong enough to endure it even when it doesn’t feel like it. We can empower ourselves and each other.
If you are in pain of any kind, whatever the nature, severity, or frequency, I wish you much hope, love, strength, consolation, courage, and healing. It can be so difficult and lonely and agonizing but we can prevail and go on.
“You can be greater than anything that can happen to you.” ~ Norman Vincent Peale
“When you come close to sellin’ out, reconsider.” ~ LeeAnn Womack