A Eureka! Moment?

I’ve been dealing with a migraine all week and it has varied from tolerable to making me worship the porcelain god.  Any time I have one like this, I start going through my migraine journal and I may have had a eureka moment…

Let me start by saying, I was born with my hips out of socket, both of them.  They discovered it and put them back in when I was six weeks old.  This hasn’t been a huge thing in my life.  I have arthritis in both hip joints, but it’s not bad enough for me to really notice it unless something out of the ordinary happens and then it’s just a hitch in my step.

Two year ago, when I started having problems with pain in my legs and went through the whole what the hell is wrong with me ordeal, I still didn’t think much about my hips as a baby.  Even when it turned out to be an issue with my SI joints and the nerves that run through them, I just sort of chalked it up to one of those things.  The doctor told me that my SI joints were mildly deformed, probably the result of having been born with my hips out of socket and that this was stressing the nerves running into my lower legs.

We put in nerve-blockers in November.  They wore off in the middle of March.  Not as long as we would have liked for them to last, but not surprising either.  I was told I would probably have to build up to getting a year or so of pain management out of the injections.

Now, back to the possible eureka moment.  Since getting the nerve-blockers, my migraines have seriously decreased… Far more than they did with the Botox.  And the few I had were easily manageable with a medication called Butalbital/Acetaminophen.  Butalbital is a barbiturate, barbiturates depress the central nervous system, meaning the nerves and neurons that make up the central nervous system fire fewer signals.

Which got me wondering… Is it possible that the deformation of my SI Joints, which is the area where my pelvis meets my spine, is putting pressure not just on the nerves that run into my lower legs, but possibly nerves that run up my spine or my spine itself?  If so, is it then also possible that this is the source of the majority of my migraines?

Could nerve blockers in my lower back really be the best treatment for my migraines?  It’s nearly unthinkable!  It’s just so… mind-boggling.  The deformity is very minor, a tilt of the pelvis that pushes my SI joints into a slightly different position and made them narrower than what they should be… something so insignificant that it has never been mentioned on any of the numerous X-Rays, CT Scans, or MRIs that I’ve had done.  I mean, I’ve been told my pelvis is tilted as a result of my hips being out of socket, but lots of people have a tilted pelvis for no reason at all and don’t have migraines.

And if so, what does that mean for my triggers?  Perhaps the pressure on the nerves or spine that causes my migraines somehow make my central nervous system more sensitive to normal migraine triggers – light, smells, noise, these have always been my biggest three triggers.  Is it because my central nervous system is already in overload because my SI joints and pelvis are somehow irritating it?

It is something I will have to discuss with a doctor, possibly my pain management doctor as well as my primary care physician and when/if I get a new neurologist them too… Then maybe it’s time to see a rheumotologist about it.  I have arthritis in my SI Joints as well as my hips.  Again, it’s mild and doesn’t seem to bother me, but it could be another factor that would explain why my migraines have gotten so much worse as I have gotten older.

Wow… Just wow…

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Migraine Day

I awoke feeling fine and then suddenly, crash, there it was… Migraine Day!  I’m on 100mg sumatriptan at the moment and they scare the shit out of me (heart attacks and strokes really do happen because of vasoconstrictors and I have chest pains when I take a half of one), so I broke a tablet and now, I’m waiting it out.  Which essentially means, I’m waiting to see if the chest pain is going to require a hospital visit.  In the mean time, I thought I would do a little writing about “But you don’t look sick syndrome”.  This is the belief that because a person doesn’t look like ill, they aren’t ill.

It applies to soooo many things; lupus, Crohn’s, migraines, epilepsy, arthritis, fibromyalgia, chronic fatigue syndrome, Sjogren’s, Celiac’s, chronic pain syndrome, and so many more.  People who have never experienced an illness that couldn’t be “seen”, really don’t understand.  However, for the millions of us that do, let me try to explain how we deal with it every day.

I love movies.  I love going to live music concerts.  I love going to the theatre.  I don’t do any of these things hardly at all any more.  My friends seem to think it’s disinterest, because I have a really hard time explaining that my biggest migraine trigger is light.

Take a moment and think about that.  I have a condition where lights can make me physically ill.  Not just flourescent lights, but all lights under in the right situations.  This includes sunlight and light play.  For those that don’t know, light play is how light and darkness work together to create patterns of light and dark.

So, going outside without my sunglasses, which are actually amber tinted and prescription based, can trigger a migraine during the day.  That’s all it takes.  Fifteen minutes outside without sunglasses and I’m done.  Now, let that sink in for a moment, I’ll wait… … … …  How do you explain to someone you were late because you couldn’t find your sunglasses?  That doesn’t seem like a logical reason to be late to work or to meet a friend.  But for me, it’s a necessity, because even on overcast days, sunlight can trigger a migraine.

Move that to a theater with the latest blockbuster on the big screen.  I’m sitting in a dark room watching an illuminated screen with lights that are constantly changing.  And what people can’t detect with the human eye is the frame by frame change of how the lights are being projected.  But my brain notices and suddenly, the pounding starts.  I’m fine if I can watch a movie in a lighted room, the light changes don’t impact me as much, but in the dark, nope, not happening.

It’s worse at a concert.  Rock concerts are full of strobing, dancing, color changing lights that move all over the place.  And I could sorta handle them in my twenties, but in my thirties?  No way.  A few minutes is all it takes to start the migraine.

Plays are tamer.  However, that unfortunate light play is still there.  Sitting in a semi-darkened audience, staring at a brightly lit stage where the intensity of the lights change.  Yep, that’s another problem.

Ok, so it gives you a headache, pop a Tylenol and come anyway.  That’s what I hear most often.  Yet a headache and a migraine are not the same thing.  I know because I get both.

A headache makes your head hurt.  It’s an achy dullness in your skull, usually all over, unless it is sinus or hormone related.  It hurts, but it isn’t a game changer.

A migraine is like having your heart in your brain and there isn’t enough room for both.  It’s an intense pounding sensation.  It isn’t dull and achy, it’s sharp and stabbing.  And it really is connected to your heart beat.  Every time your heart contracts, pushing blood through your body, it’s like having something slam against your brain.  That sensation of pounding is caused by the blood being pushed into your brain.  Oxygenated blood that is vitally essential to life being forced into your brain to keep it alive is being perceived as painful stimulation by the very organ that needs it.  Your brain responds by making neurons fire faster, overloading your system, trying to shut it down.  So, essentially your brain is trying to make your heart stop beating to alleviate the pain it is perceiving… Eventually, this system will work, and you will “fall asleep.”  But every migraine sufferer knows the truth, they don’t fall asleep, they pass out because the brain can’t handle the pain of the heart beat any longer while the sufferer is conscious.

And the cause is … a mystery.  Why does sunlight trigger a migraine?  Why does sodium nitrates trigger a migraine?  Why does loud noises trigger a migraine?  Why does a headache trigger a migraine?  We have no real answers.  There are lots of theories, but clinically studying a migraine is problematic.  The only real way to “see” a migraine in a clinical setting is by monitoring brain waves, which drastically change when a person has one.  Even an MRI is not full proof in seeing a migraine in action.  Hard to study something you can’t really see.

Like all the other invisible illnesses, just because we look fine, doesn’t mean we are fine.  And the chances that we can explain it to you in a way you will understand are limited, at best.  Plus, there is so much more to an invisible illness than just the main symptom.  The migraine pain is awful, but the other symptoms (blurred vision, vertigo, ringing in the ears, hallucinations – auditory or visual, in ability to focus, feeling of malaise, feeling of fatigue, vomiting, etc), suck just as much.

I Didn’t Need A Study To Tell Me That

Recently, I read a study about chronic pain sufferers, including migraine sufferers, overusing over-the-counter medications like acetaminophen, ibuprofen, aspirin, and naproxen.  I didn’t need a three year long study to tell me that.

Society thinks most chronic pain sufferers are drug seekers.  So, most of us do not get prescribed medications that might actually relieve our pain.  I know at least one clinic in my hometown has a notation in my chart that I’m a drug seeking patient.

The problem with that is, I’m not.  I actually do not like the effects of narcotics.  It reminds me of having vertigo.  I take meds to stop vertigo, why would I willingly abuse medications that cause similar effects?

Unfortunately, when I have a migraine, I’d shoot heroin if someone told me it would help (and it was safe).  Triptans work best for me, but I have trouble taking triptans anymore.  I’ve over used them through the years because of chronic migraines (which is a form of chronic pain) and have developed some heart problems as a result.  Preventive treatment has yet to work for my migraines, but I’m still searching for the right one.

I have trouble taking ibuprofen and naproxen.  I’m starting to have trouble with aspirin too.  It all makes my stomach hurt.  I can still take acetaminophen, but I take a lot of it and eventually, it’s going to become a problem as well.  What will I do when I reach that point?  I don’t really know.  I try to think that far ahead, but then my head starts to pound and I start popping pills and all those thoughts about my future become a blur.

However, I know I’m guilty of overusing over-the-counter drugs simply because I don’t always have enough migraine meds to last a month.  Or sometimes, I just get tired of popping the tablets for migraines because I feel like they aren’t going to work any better than an Excedrin, so why waste the prescription.  Worse, my migraine meds right now are Fioricet (non-codeine, non-caffeine – my blood pressure actually lowers with certain types of migraines which is why the vaso-constrictors worked so well) which means I’m taking a barbiturate and acetaminophen.  I do try not to exceed the daily dosage restrictions, but there are times I just lose count of how many I’ve taken or how long I’ve been taking them or how long it has been since my last dose.

When I have a migraine, time is not my friend.  Clocks might as well be in Aramaic.  I can’t add or subtract time even with a digital clock (this is how I overdosed on codeine as a teenager when my former doctor was convinced that migraines were just a result of puberty and would only prescribe Tylenol 3 for them).  So, I know that once in a while, I have to fail miserably at following the dosing instructions.

It is terribly unlikely I’m alone in that overuse of OTC meds and I didn’t need a study to point it out to me.  Maybe the problem isn’t really us though, maybe it’s the thinking of the medical community.  Once or twice a month, I have a migraine that just will not go away.  There is nothing I can do for it to make it better (for the record; things like exercise, pushing through it, and physical exertion make migraines worse… Not sure you have a migraine?  Do some jumping jacks.  If it didn’t get worse, it’s a headache, not a migraine).  But now one of the urgent care centers considers me a drug seeker, so they will not do anything but give me anti-nausea medicine and tell me to take a nap.  I get insomnia with migraines.  Forget the narcotics, give me a sedative and make me sleep for the next 18 hours or so. That would probably help.  The last time I went, they gave me Phenergan and 800mg ibuprofen tablets after I told them that ibuprofen makes my stomach hurt so badly, I cry and curl up in the fetal position.  Yeah, that’s exactly what I want with a migraine.  I filled the Phenergan, I didn’t bother with the ibuprofen.

I guess I really need to work on becoming a Jedi so I can control my brain with my brain (meditation also does not help a migraine and can make it much worse, because the focus becomes consumed by the head throbbing, which creates anxiety, which increases the heart rate, which worsens the migraine, which causes a migraine sufferer to focus even more on the pain, etc, etc, etc)

Migraines – An Invisible Illness

Since, I’m still recovering from my last migraine, it is still on my brain; both literally and figuratively.  The necessary aggressive treatment has caused a minor rebound migraine.  However, I managed to get Mutilated Dreams mostly sorted out, meaning I got all the stuff from the betas that had contacted me into the story, or not, depending on the case.

I’m kind of amazed by my productivity and I realize, it is part of the problem.  I can do things with a migraine.  Years ago I became tolerant to the pain.  I no longer require dark rooms without noise to keep myself from vomiting until I pass out.

Most migraines are defined as intense, throbbing pain, located in a portion of your brain, that disrupts your daily life for four or more hours.  Technically, they no longer disrupt my daily life, not in the way most people think they do.  Primarily because I am no longer throwing up until I pass out.

Here’s what it does do to disrupt my life:

  • My brain slows down.  I can actually feel myself thinking slower.  I can feel myself reacting slower.  I don’t dare drive a car in this condition.  Driving with this foggy sense of self could be deadly.
  • My vision is impacted.  I see spots; both bursts of light or dark patches.  I get tunnel vision, where the sides of my vision disappear in a blackened haze.  My newest migraine experience has made it so that I was almost completely blind in my right eye while it was happening!  And it lasted for a week.
  • I hear things.  Some of my migraines actually come with auditory hallucinations.  I hear fake conversations between people that probably don’t exist.  What’s really trippy is when this happens and I’m home alone.  One day, I came into the living room convinced my mother was talking to my grandmother.  A feat, since my grandmother died in the 1990s.
  • I do have nausea, I just don’t vomit anymore.  So, I don’t eat much when I have a migraine.  I also tend to crave things that I know are migraine triggers.
  • My personality changes.  I’m basically Dr. Jekyll and migraines turn me into Mr. Hyde.  Migraine Me swears more, is irritated easier, gets angry over little things to the point of rage, and stews over shit that normally wouldn’t bother me until I want to go boil that person’s head in oil… Like changing the channel.

I’ve had other migraine sufferers tell me that my migraines must not be that bad, since I don’t vomit and pass out.  I want to strangle them.  One spot of head feels like it is on fire.  It is throbbing in time to my heart beat.  I want to strangle someone anyway while eating a bacon sandwich and sucking down a bottle of red wine.  I’m hearing people that don’t exist and my language skills have gone to 10-year-old pirate.  God forbid I have to do anything that requires concentration or coordination.  But yes, I must not have them that bad.

I’ve also heard this: So-and-So has them and she can’t get out of bed with hers.  Are you sure you don’t just have a headache?  I would love to have a headache.  Seriously, that would be an improvement.  I made it out of bed, happy happy joy joy.  We should go celebrate, I’ll bring the knives.

Migraines aren’t imaginary.  They certainly aren’t headaches.  And everyone experiences them differently.  I can do things other migraine sufferers can’t, but I’ve met people with more tolerance than me and all I could think was “wow!”  I worked with a woman who had chronic migraines.  When I met her, she’d been in a pain cycle for just over 5 years (and we worked together for a further 3 years in which it was never broken).  Every day at lunch, she closed her office door, put on a mask and napped.  She didn’t eat lunch, it would make her sick.  Yet, she still made it to work every day.  She still managed to do her work every day.  She also ate migraine meds like candy and suffered liver and heart damage, but she did it.  I don’t know that I could have.  Aside from my Jekyll/Hyde personality, I have problems focusing on words, letters, numbers, sentences, language doesn’t always make sense to me and I definitely cannot pay attention to small details.

Just something to think about when someone says they have a migraine.

Um, Try That When You Aren’t Stoned

So, my migraine from last week required an extra special dose of insane treatment.  I was given a whole lot of drugs and sent home.  Some were injected into my hip, others were given to me in prescription bottles.

And I started taking them.  I’m not even sure I know what all of them are at this point.  Mobic, Percocet (that one I know!), Tramadol (know that one too!), and something with a weird long name that I can’t read in the dark.

Now, I’ve taken Percocet and Tramadol in the past without any problems.  However, I started taking this batch and my brain fizzled out.  Whatever was supposed to come out of my mouth was a jumbled mess and I wasn’t doing much better with my fingers.  Actually, my texting skills went away completely, as if I had texting aphasia.

Of course this did not stop me from texting or from talking.  Quite the opposite.  I talk a lot more and feel the need to text more when I’m on narcotics.  I don’t know why, but I do.  Normally, there’s some disconnect between my brain and the implements of communication, but not enough for it to be an issue.

This time though… Wow, even I was reading my text messages and wondering if I knew what I was talking about.  Some of it was in German.  Some of it in English.  Some of it might have been in an imaginary language.  So, I got to looking Friday evening as I popped down another Percocet and there was the problem.

I’m a lightweight when it comes to narcotics.  I’ve never had more than 5mg Percocet tablets prescribed before and here I was popping 10mg tablets.  Holy crap!  Mixed with the blah-blah-blah-blah (it might have hydrochlorate at the end of it) and the Tramadol, not only did I not have a filter between my mouth and brain (or brain and fingers), but I didn’t have the mental competency to form coherent thoughts.

Saturday, I started cutting those puppies in half.  I’m still working on getting rid of the migraine, but it’s much better.  My problem seems to be that they go on for so long that it takes a few days worth of meds to get rid of them and then I have to hope I don’t get slammed by a rebound migraine.

Somehow, I was still able to write Friday.  I even went back through it to make sure I hadn’t scribbled gibberish and it was actual, logical, coherent thoughts.

Yes, I have a migraine, so I might kill you

All sorts of migraines exist.  Mine are centered in the left hemisphere in my frontal lobe (right side, in the front).  I have developed two different types of migraines now in that area.

One, which I’ve had since I was 8, is a burning, throbbing pain that expands over a wide portion of my frontal lobe and into other parts of my brain on the right side.  Symptoms of these include personality changes, depression, agitation, trouble speaking, difficulty finding words, impaired motor function, and vision issues.  I also go color blind when it happens.

The second is new.  It’s a stabbing throbbing pain that goes from my skull down to my eye ball.  Even my eyeball throbs with my heart beat.  Symptoms for it are slightly different.  I have trouble seeing out of my right eye when it happens.  My motor skills become impaired and I have personality changes.  No depression, but I become extremely agitated.  I do not become color blind, I do not have trouble speaking or difficulty finding words and it doesn’t burn.  I also have zero warning.

The first is an aura migraine.  Most of the time, I have 20 hours or so to start treating it before the actual migraine hits.  The second just hits.  One minute I’m fine, the next it feels like I have a very long, very wide knife sticking out of my head and the tip is trying to make my eyeball explode from its socket.  Even my hair seems to hurt with this migraine.  I have no idea what kind of migraine it is.  It is very responsive to migraine medicine, in the sense that when I take the meds, it goes away.  As they wear off, it comes back.  And for the record, the migraine meds do not last until the next dose.  So I spend a lot of time just counting the minutes (or hours) until I can take another pill.

Now, when I was younger, the migraine would hit, I’d spend some time throwing up and then I’d pass out.  I no longer do that, although, most of the time, I wish I did.  I had a neurologist once explain that it was tolerance.  I had migraines so frequently, that I was becoming tolerant of the pain.  He also told me it was a very bad sign, since I was in my late teens when it happened.

Eighteen years later, I agree.  I become tolerant of migraine meds very quickly.  My migraines last much longer because I no longer pass out and instead have insomnia with them.  And the only sure-fire way to knock them are all controlled substances.

DHE works incredibly well on my migraines.  I used to get self inject, but they are no longer allowed to distribute DHE in that form.  Now, they require hospitalization and that is about as much fun as putting your head in a blender.  I’ll suffer at home for months before I agree to that ever again.

The other is narcotics.  I miss Darvocet.  It worked well for my migraines and since it was very low on the list of narcotics, doctors were more likely to prescribe it.  Tylenol 3 is a joke.  Codeine absolutely doesn’t help.  Vicodin does help, but not a lot.  I have to start moving into the realm of serious narcotics; Percocet, Demerol, oxymorphine, morphine, and oxycontin all work well, to varying degrees.  Unfortunately, I have enough of these hard to knock migraines that I look like a drug seeking patient.  I know because they have started trying to find alternative meds to put in the migraine cocktail at the ER.  It used to be they filled it with Demerol, Toradol, and Phenergan.  Now, they want to give me just Toradol and Phenergan.  By itself, Toradol doesn’t work.  I wish like hell it did.  I’d ask for a script for it and just pop the pills at home as need be.  Since it’s a nerve medication and not a narcotic, a doctor would be more likely to give me a home prescription of Toradol or even Tramadol.

As a chronic migraine sufferer, you’d think the medical community would be a little more understanding of my condition.  I’m not a drug seeker, I actually hate the way narcotics make me feel (I don’t ever get drunk for the same reason).  I get that we don’t actually understand migraines very well, but I also know that a lot of chronic migraine sufferers have seriously considered suicide as an alternative to the pain.  I’m one of them.  When you enter week three or four or six of a migraine and nothing is helping and no one wants to help you, unless you are admitted to the hospital, it becomes a situation of hopelessness.  You feel like the pain is never going to leave.  You feel as if no one cares.  You feel as if you are losing a part of yourself.

The problem with admission to the hospital for a migraine is that it is at least 72 hours.  That’s 72 hours where you mostly have a migraine, despite the narcotic drip and DHE.  They don’t let you sleep.  They require you to notify them if you need to get up and go to the bathroom, for a woman with Sjogren’s, this means I have to hit that buzzer a lot because I’m always thirsty, so I pee often.  They feed you a liquid diet; so cream of celery soup, cream of wheat cereal, etc,; which does provide you with nutrients, but since I’m no longer throwing my guts up or nauseated with my migraines, I want actual food.  They wake you up during the day and night, if you can manage to fall asleep at all.  The IV drip is horrendous, I usually blow veins.  I have Sjogren’s, I’m plenty hydrated, pushing fluids causes me to swell up, my fingers become vienna sausages and me feet look clubbed.  Not to mention the 22 pounds I gained last time just from fluid retention because they were pushing fluids and I was still drinking my 150 ounces of fluid a day.  And most hospitals do not give migraine patients a private room.

My last roommate was an elderly woman with emphysema and was partially deaf.  She didn’t understand migraines and kept telling me that a headache should not require hsopitalization.  She kept the TV volume really loud and every time she coughed, I wanted to slit her throat because it made my head feel like it was exploding.  The time before that, my roommate was a woman in her 40s who was in there for a broken leg.  I began to keep track of her visitors because there was always people there.  From seven in the morning until nine at night, there was at least two people on her side.  At one point, she had six visitors on her side.  That curtain does not block out sound, especially when the roommate cackled like a crow.  After the visitors left, she wanted to talk to me.  When the nurse came in and explained I had a migraine and probably didn’t want to talk, she turned on the TV to infomercials and then fell asleep with it on.  When I turned it off, she woke up and yelled at me because she was watching it.  However, nothing tops my first roommate.  I’m sure she told me why she was there.  She told me everything else about herself, including her fucking shoe size.  The woman would not shut up.  When my parents or best friend would stop to check up on me, she would talk to them.  At one point, she began singing!  They moved me into a different room on day 2 because I told the nurse if they didn’t drug her, I was going to remove her vocal cords.  The roommate after her was much quieter, a cancer patient that spent most of the next two days throwing up.  How do they expect migraine patients to get better when they are being bombarded by stimuli they can’t control because of a roommate?  How is a hospital a better environment for migraine relief than being at home, where the sufferer does have some control over the stimuli?

Thanks, but no thanks.  That kind of treatment is liable to make me a murderer.  Especially since I do become hostile and aggressive anyway because of a migraine.  (We believe that my personality is deeply affected, because my migraines are centered in the frontal lobe which controls a large part of personality.)  I’d rather suffer at home than be tortured at a hospital.

Never Read the Comments!

#MigrainesSuck

At the ripe age of 8, I was diagnosed with “hormone headaches.”  This diagnosis was incorrect and in my early 20’s, I was diagnosed with three types of migraines: migraines with auras, cluster migraines, and migraines with pain.  Once I hit my thirties, we added chronic migraines.

Having 4 types of migraines is… well, painful.  I have migraines 25 out of 30 days of each month.  And I have to determine, using the symptoms, exactly what type of migraine it is to correctly treat it.  I have checklists for them to help.

To complicate matters, I suffer from Migraine Tolerance.  My body has gotten used to life with migraines, so I no longer have some symptoms that would help narrow down the exact type.  It also means that when I say my migraine is a 5, most people would categorize it as a 10.  This makes treatment even more difficult.

In the last 12 months, I have visited my doctor or the ER 17 times to treat migraines that did not respond to medications (these are normally cluster migraines).  Preventive meds have never proven useful for me and in an twist of universal irony, some of the meds to prevent certain types of migraines can create other types of migraines.  As I get older, they get worse, but I think about them less.

However, tonight, I got linked to a website talking about migraines and types.  I made the mistake of reading the comments.  By the time I finished, I had a headache, because I have no doubt that my blood pressure had gotten a little high.

The comments section appeared to be a pissing contest between users on who had it worse.  This is a lot like breaking out rulers to compare penis sizes.  I understand my pain and my pain only.  I can sympathize with others, but I can’t experience their exact pain, so I can’t tell you if my cluster migraine is better or worse than your retinal migraine.

Here’s the basis behind that:

  1.  My migraines with auras are treatable, sometimes really easily, as long as I catch it during the aura.  My aura includes a burning sensation in my head, a personality change (I hate everyone and everything and would prefer to kill people than talk to them), and vertigo.  These migraines are bad, but they aren’t debilitating anymore. Once upon a time, I would find myself puking my guts up and passing out on bathroom floors.  I was photophobic and audiophobic.  However, as I’ve developed tolerance, I rarely throw up and while I am still photophobic, I’m not audiophobic.
  2. Migraines without pain are also treatable, but harder to diagnosis.  I know something’s wrong, but I don’t always realize I’m experiencing the aura (no burning sensation with these) of a migraine and therefore, don’t always realize that I have a painless migraine.  Vertigo is also not a guarantee.  I still suffer from personality changes and with these, I get diarrhea, which I don’t get with any other migraine.
  3. Cluster Migraines are hard to treat in me.  My first migraine was a cluster migraine.  It hit every day for three months at the same time.  As I said before, I was 8.  I didn’t understand why my head was trying to explode.  I just knew that it was.  I have no aura, often finding it is there when I wake up (that pesky tolerance again), and I have nightmares when a cluster migraine hits.  Afterwards, regardless of how I’ve gotten rid of it (via meds or on its own), I’m exhausted.  Not tired, but literally exhausted.  Getting up to pee takes an act of congress signed by God and passed down the chain of command to my body.  Also, I can’t sleep with one.  Insomnia is the most evil part of a cluster migraine.  Sleep helps migraines, not being able to sleep when you have one is sort of like removing your fingernails with pliers because you jammed your knuckle.  And while most of them hit when I’m sleeping, that isn’t a hard and fast rule.  I may get one every afternoon for five hours (after which it disappears), but I will get the pain back at the same time the next day and then the next and then the next and it can last for weeks.
  4. Chronic Migraines are awful, but I prefer them to clusters (most people prefer clusters).  Chronic migraines are why I have migraines 25 days out of 30.  Before the chronic migraines kicked in, I had migraines 15 days or so a month of different types.  I’m not sure why I got diagnosed with chronic migraines, except the frequency and duration of my migraines increased.  My chronic migraines are similar to cluster migraines, but last a little longer.

On top of the “migraines,” I get tension headaches and hormone headaches, because I need a few more days of head pain.  However, it’s a different type of pain.  When I have a migraine, my head feels like it is trying to implode.  My own pulse is my worst enemy and I try to meditate to slow my heart rate and therefore, slow the pounding in my skull.

Everyone who has migraines of any type have one thing in common, when they have one, they will take anything to get rid of it… Literally.  Recently, I learned LSD has shown some promise at assisting with cluster migraines.  My first thought, how do I get into that study?  Someone could hand me heroine and tell me it would help and I’d heat up the spoon and inject it.  Some of the meds I take have warnings that side effects include death, heart attacks, strokes, and brain damage.  I still take them.

Ok, so back to the comments.  There were a lot of comments about migraines being an overblown condition and that it was just a headache, the sufferer should pop some Advil and get back into the world.  It isn’t and Advil doesn’t help.  During my worst cluster ever, while I was hospitalized getting Demerol and DHE without my migraine going away, I honestly considered suicide, because death would end the pain (by the way, DHE is one of the drugs where death is a side effect).  It didn’t come to that.  My doctor, realizing that the DHE and Demerol were taking too long, upped the DHE dosage and switched me from Demerol to something else that gave me a little more relief.  I’ve talked to others with migraines and they have all said that “yeah, they have considered death as a viable alternative to a migraine.”  I’ve never heard of anyone with a headache thinking that death was a perfectly acceptable alternative form of treatment for their migraine pain.

The other ones that pissed me off were “Mine are worse than yours, so suck it.”  My neurologist once told me I was the most migraine tolerant patient he’d ever seen.  He also told me I had some of the worst migraines he treated.  So does that mean that my migraine is worse than yours?  Not really.  Mine’s a migraine.  Your’s is a migraine.  They both suck a whole lot.  If you have hemiplegic migraines, I would say yours are worse than mine, even if mine lasts for three very long months.  At least I don’t have paralysis with mine.  However, I’ve now had two people with hemiplegic migraines tell me that they feel sorry for me, because my migraines are worse than there’s, in their opinion.  I’ve had dozens of people give me sympathy because I’ve developed migraine tolerance, because when they get a migraine, everyone knows it, but when I get one that makes me think about ways to stop my heart beat, no one realizes I’m having a migraine.

And that’s why you should never read the comments on something like that.  It just makes you sick, mentally and physically.  Also, you can’t compare pains, because until you have experienced that exact pain, it’s hard to understand it.  My migraines are not like your migraines or Joe’s for BFE, so I cannot judge my migraine to be better or worse.  Just as you can’t judge that your migraine is better or worse than mine or Joe’s.  Migraines have symptoms, but they are generic symptoms.  I don’t get tunnel vision with my aura, I see explosions of colors.  I don’t know if that’s better or worse than tunnel vision.  However, “explosions of colors” (not spots in my vision, but actual explosions of colors), are not a “listed” symptom.  Meaning, it’s rare enough for it not to get mentioned in the “symptoms checklist” on WebMD.

And a migraine is not a headache.  They are MILES apart.  I’ve had headaches.  I’ve never wanted my heart to stop beating so that my head would stop pounding with a headache.  I do that with almost every migraine I experience.

Migraines

The interesting contradiction about migraines:

They go away with sleep.

Sometimes, you find yourself watching dog videos at 2 a.m. because your head hurts too much to fall asleep.

That is all.

Migraine of the Year Award

Thanksgiving day, I came down with a terrible migraine.  Since then, it has faded and returned irregularly, but never actually gone away.  It doesn’t change and the source seems impossible to find.

If it was food related, it would have gone away by now.

A muscle in my back has bothered me off and on, but stretching and exercise doesn’t help the migraine (exercise makes it worse).  Massaging the muscles do not seem to help either.  I’ve done everything from the balls of my feet, to the ridges that develop on my scalp when I have a migraine to no avail.

I’m due for my next Depo-Provera shot, but I only came due for the hormone boost this week.  Besides, hormone migraines are in a different area of my head than this migraine and I don’t develop the scalp ridges with hormone migraines.

My sinuses have bothered me some during this time, but it isn’t constant and it isn’t centered in a normal sinus area… it’s centered in my “migraine center,” a specific spot in my brain that hurts when I have a “real migraine.”

My stress levels are a little high, but tension and stress headaches happen in my neck, not the front of my head.  Also, they don’t cause the burning sensation that I get when I have a migraine.

It’s very weird.  I don’t know what to do for it at this point.  I’ve stopped taking drugs thinking it was the medications to treat it that were keeping it fueled, but that didn’t help.  Now, I’m back to taking them and getting only minor relief.  My scans are as normal as ever.  There’s no reason for me to have a migraine for over a month… but I do and I can’t break the pain cycle or figure out the source.  Very irritating.

The Consequences of Life Choices

My SO is a huge into dirt track racing.  He is sort of the pit crew for a driver.  He spends a great deal of time working on the car with Scotty and I think it’s great.  We all need hobbies and racing is his.

Until last night, I had been to one dirt track race.  They were mini-sprints on a small track.  There were a handful of problems.  It was dirty.  I’m not a fan of dirt.  It was loud – millions of bumblebees screeching through the air loud.  And I sat in the pits, but the pits were in a corner, not the center of the track.  It made me slightly nauseated.  Meaning, it set off a touch of vertigo.  It wasn’t bad, I learned to stare at one spot on the track and I did ok once I walked away from the cars and into the shelter of not being able to see.

Last night, I agreed to try again.  Bigger race track, bigger cars, what could go wrong?  Everything!  

It was noisier.  Who would have thought?  It smelled really bad – alcohol fumes, gas fumes, generator fumes, body sweat, etc.  And the cars moving faster… wow!  There wasn’t a spot where I could just stare and watch them go past.  It made me sick.  But I had a solution!  I had my Kindle.  So I set in my chair, turned sideways and began reading a book.  Then I got sicker.

A lot sicker.  It became so bad, I had to pop a bunch of medicine and put my head down.  After about two hours, I was feeling better and I discovered why the vertigo was getting worse.  The way my chair was set, I could see the cars move just inside my periphery vision… on both sides of the straight away.

I made it through the night, but I still don’t feel great today.  As a matter of fact, it’s back to bed for me.  I will not go racing again.  But at least I tried to support my SO and his buddy as they did what they love.

C Patt

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