Head Pain from Hell

May 13th, 2008 at 4:13 pm by Mark
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     If you’ve never experienced a migraine or cluster headache, you probably think those who suffer through them are crybabies.  If you’ve ever had a minor migraine, you probably think they’re a piece of cake.  However, when people tell me they have them, I expect them to be like mine, or at least somewhat close.

     I’ve said before that I’ve suffered from them — doctors have told me different things about whether or not they’re migraines, cluster headaches or cluster migraines, or maybe a mixture of things — for over 30 years, but thinking back a little more, I wonder if I didn’t have them from birth.  I can remember a few instances of lying in the floor of a trailer we moved out of when I was four years old, in pain, unable to move, being blinded by the sunlight coming in the bedroom window.  Where most mothers would have taken their children to a doctor and showed some concern, mine simply decided that I had no tolerance for pain.
     As a matter of fact, save for a single trip to the emergency room where I was paralyzed — my father drove me — I never received any actual “treatment” until I was eighteen and able to get my own medical advice.

     I described the pain a few months ago.  It’s constant, persistent, asymmetrical, and becomes more intense as time drags on.  Left unchecked, it will develop into something very akin to having a large portion of your skull removed with a jagged ripsaw while someone else digs into the open bone with a high-speed drill.
     If you can’t imagine that, try this: cover a piece of ice in aluminium foil and bite down on it as hard as you can with your most sensitive tooth.  While taking a baseball bat to the back of the head and have a red-hot fire poker jabbed into your eyes repeatedly.
     And now, that you’ve imagined that, imagine that it’s constant.

     It’s a threshhold-of-pain incident where you can’t make it any worse and pass out, and you can’t do anything else to make it tolerable.  Often, you’ll lose control of your bodily functions, causing you to defecate, urinate and vomit all over yourself.  Sometimes, you’ll end up paralyzed — not from fear that movement will cause pain, but because your legs simply won’t work.
     It’s a sort of pain that makes you pray to God to end your life.  Forsaken and alone, it makes you wonder what kind of “loving Father” would allow children to experience that kind of Hell.  Suicide seems logical — if not necessary — to make the pain stop, as you know for certain that Hell will not be as excruciating.  Torture is for pansies!  You curse yourself for not having the ability to die by your own hand, and then curse God for not taking your life for you.  Finally, you have no choice but to relent that there is no God.  You curse your body.  You curse your Life.  You curse everyone around you.  You curse the Universe.
     When it finally ends, you’re so fragile and exhausted you can’t even appreciate the fact that it’s over.  Your memory is cloudy, and if you’re lucky enough to remember everything you did, it’s often hard to understand why.  You probably have a lot of apologizing to do, and have a hard time trying to superimpose “normal” over all of your mania.
     And, more than anything, you’re terrified, knowing that one day, it’ll happen again.

     According to a report I read this morning, I’m not alone.

The nationwide study of 1,007 migraine sufferers was conducted by The Gallup Organization for Cerenex Pharmaceuticals. It found that the pain of migraine is so excruciating that 35% of sufferers indicate that they have wished they were dead during an attack. In addition, a significant number rated migraine as being more painful than childbirth (19%), a broken bone (28%), arthritis (33%), athletic injuries (42%), and a bad burn (42%).

Ninety-three percent of migraine sufferers have used over-the-counter (OTC) or nonprescription pain relievers to treat their headache. Forty-nine percent of those who take OTC medications noted that these nonprescription pain relievers are not successful in alleviating the pain. A similar number admitted that they take more of these OTC pain relievers than recommended.

Approximately 57% said that migraine makes them feel “out of control,” while 73% stated that their daily activities are limited or impaired, including leisure pursuits (49%), socializing (50%), and driving (45%).

While not a psychological disorder, migraine can have a psychological impact on the sufferer. Fifty-eight percent felt that it has reduced their ability to enjoy life; approximately half have feelings of anxiety (54%) and helplessness (48%); and 41% experience depression.

Migraine affects more than the sufferer. Seventy-two percent noted that it has hurt their ability to take care of family and personal responsibilities, and 64% believe it has a negative effect on family or others around them. “Migraine often impacts the entire family,” explains Margaret Abernathy, director, Headache Treatment Center, Georgetown University Medical Center. “If sufferers are not seeking proper help to manage migraine, they often find themselves retreating to a dark room for the duration of the attack. This obviously has an effect on the sufferers’ ability to function normally in family and social situations.”

     From 7AM last Tuesday morning until around midnight on Friday, I went through one of the worst episodes in years, although the severity changed dramatically from hour to hour.  The last time I can remember one being “Emergency Room” bad was nearly six years ago. The last time I can remember it paralyzing me was maybe ten years ago.  Then again, my memory’s still a bit foggy…
     Regardless, absolutely nothing would help.  Wednesday, I cried the entire day.  Thursday, my legs ceased to work.  I got stuck in the floor in an upright fetal position, unable to move myself onto the bed.  Some time later, I drug myself — by my arms — into the bathroom and over the edge of the tub into hot-only water where I laid on my left side for God knows how long.
     I couldn’t feel the burn until Friday afternoon.  I incorrectly assumed all my itching was an allergic reaction from the massive amount of Advil I was eating.

     The truth is, there’s a reason I never want to go to the hospital.  When you’re blind, half-paralyzed and manic, they make it more difficult with all their paperwork and waiting and stupidity, and it’s easier to just lie there wanting to die.
     Most of the time, even if you a get there, they treat you like a drug addict or a criminal, even though you clearly need pain medication.  After a point, there isn’t a lot they can do but shoot you up and wait it out.  And they’re so antsy at that point, they rarely give you enough to stop the attack… it just makes things a little more manageable, while still being in intense pain…

     On Friday, I finally relented and saw a doctor.  I was immediately referred to the ER, thus skipping a lot of the usual BS.  Sure, I still ended up with the “addict” stigma from the ER doc, but he was righteously chastised by the staff for it.
     Later that day, another regular doctor actually listened, and prescribed me something useful.  He chastised me for waiting so long, and warned me that as I’m getting older, an established headache will be more intense and harder to get rid of.  “Take your medication as soon as you feel it coming on!  Do not wait like this again!  Next time you may not come out of it so well!”

     It was an altogether different experience.  ER doc aside, they all took really good care of me.  There was concern.  They helped.  They checked up on me.  Very different than the usual McHealthcare fare…

     Do you want fries with that?  Thank you.  Drive through.

     To top it all … I’m certain that there are people who have it even worse.


8 Responses to “Head Pain from Hell”

  1. Mushy Says:

    I’m lost for words…the only thing I’ve had that would come anywhere close is a full-blown gout attack. My wife had to hide the guns, knives, and axes so I would not chop my big toe off! It is absolutely excruciating, so I can at least empathize somewhat with you.

    Hope the next one is long in coming.

  2. Zacque Says:

    Just glad to know you are feeling better. I was worried.

  3. Catscratch Says:

    I’m glad you finally got the doctors to listen. I hope you’re feeling better, Mark.

  4. Mark Says:

    I had one six months ago who listened, and came up with “weird” stuff. What he did helped, but there were other problems. Almost two years ago, same thing — too many other problems.

    It’s obvious now that Prevention ain’t gonna work. I either need a Treatment at the time or a Cure. For the cure, I’m gonna submit to one more round of testing by a neurologist on the condition that there are *no* Nerve Conduction studies. Even with my pain tolerance, those things hurt…

  5. Evan Davis Says:

    Hi. What you’ve described is what my wife routinely goes through. If it were merely sheer torture, it wouldn’t be so bad. That sounds insane, I know. Evidently you know, as well. What you have described is what my wife in so many words has also tried to convey to me. My question to you is what pain management strategies have you found helpful? What medications have brought relief? We have tried and continue to explore every possible recourse that we can find. She has been to the Diamond Headache Clinic, which was useless (perhaps worse than useless if that’s possible). I would be grateful for any specific advice you may be able to offer. Please feel free to respond to the email address associate with this blog post.

  6. Mark Says:

    Quite honestly, Cymbalta worked — but destroyed me. The side effects were so severe (tingling skin and diminished manual dexterity) that I couldn’t do anything that required tactile function, and sex was all but impossible … or, rather, the place you’re trying to get to, anyway … Arg …

    What did work to alleviate the pain was Hydrocodone, if taken early, when I first noticed the onset — the tingling up the back of my neck as the skin starts to thicken, a symptom which ALWAYS precludes the problem.

    I also noticed, as I mentioned in the first post, that normal Hydrocodone, cut with Acetaminophen/APAP is something that gives me a hangover for days after an attack.

    An Indian doctor in a most unlikely place (the one I mentioned in the post) actually recognized the problem and prescribed 7.5mg Vicoprofen — Hydrocodone with Ibuprofen, and chastised me for not taking it… And ya know, for the most part, as long as I take one prior to it becoming an “established” headache, it works! So I plan on keeping them on-hand.

    At that dosage, it’s the bomb. Two (at 5mg each) were too much, but the 7.5mg’s are *perfect!* It’s now October … I still have them, less the ones taken to stave off an attack (which, truth be known, have been pretty frequent over the last few months, but not so much as to be intolerable).

    One thing that’d be interesting to note for her … Have her blood pressure checked before, during and after the initial manifestation of pain. Ten to one, I’ll bet her BP drops considerably just before she feels it coming… Which is why “hot coffee” “sex” and “excercise” help so many people — and why the Cymbalta (as an anxiety/bp stabilizer) helps. Of course, during the pain, your BP is through the roof — DO NOT allow them to put her on heart medication. High BP is an OBVIOUS indicator of pain…

  7. Evan Davis Says:

    Thank you very much for taking the time to give such a detailed reply. Fortunately, she is not on heart medication. Interestingly, she is taking cymbalta, though not specifically for headpain. Unfortunately, hydrocodone and other narcotics are, or at least have been, of minimal help. Even fentynal, which was an exception, seems to have diminished. However, we can look into vicoprofen, that’s one we haven’t heard of. I’ve recently begun wondering if her pain might not be related in someway to trigeminal neuralgia or some interference with the trigeminal nerve. Thank you again for your reply.

  8. Mark Says:

    Yep, went that direction myself, but the CT said “No trigeminal neuralgia.” Besides, looking at the symptoms of TN, it couldn’t’ve caused that amount of pain — most of those nerves appear on the face as burning sensations.

    Tylenol/Acetaminophen/APAP are extremely hard on the body (yeah, yeah, I said “hard on,” huh, huhuh). Most people become sensitive to it over time to the point where it makes the pain worse … a switch to Vicoprofen and a more timely dosage tends to fix quite a lot — being an NSAID + Pain Reliever, which is the recommendation over a Blood Thinner + Pain Reliever, thus lowering the BP and making it worse — so it’s definitely something to look into.

    When I was taking the Cymbalta (a low 30mg) I only had one migraine. A few months after I was taken off of it, they got really bad… And with a lot of added stress, they became absolutely unbearable.

    There’s nothing like living with your thumbs embedded in your eye sockets… or walking around with a rock in your shoe… just so you can add some “different” pain to focus on… Noticing how your eyeballs feel freezing cold as the pain starts to subside… And it’s often in an instant…

    She’s been with me through quite a few. Ann jokes, “There are two things: One will make it worse, and one will make it better.” And when I asked her what that was, she replied, “A Wildcat.” 😉