Chronic Migraine and Suicide Awareness Day~ CM&SADay

When I hear about someone, especially a friend, trying to - or, worse, succeeding in the effort to - commit suicide, I try so hard to put myself in their shoes. It is so hard to understand what someone must have been going through to cause them to attempt suicide.  Why didn't they talk to someone? Why didn't they talk to me?? What didn't we understand?? How could things have been that bad?? How could I not have known...?

  It's so hard to understand...for most people. For some of us, though, it's so easy. Too easy... Way too easy... For many chronic migraine sufferers, especially for those of us who have been labeled "intractable," the "why" is very easily answered.  We live at the maximum range of any pain scale you might imagine (and then some!)...day after day...week after week...with very little respite.

Add to that the idea that we have been to multiple doctors...in multiple disciplines...and each of them, after trying multiple things, has passed us on to another doctor, effectively washing their hands of us (why, I've even been told by a doctor that he was washing his hands of me!)

  From there, understand that doctors, if their "on our side," are fighting a system that says that pain medication is bad. And it is, in so many ways, but...

  What the system doesn't realize, or at least, doesn't acknowledge, is limiting pain medication because we might become addicted sounds very much, to us, like limiting breathing for the same reason.

We don't ask for pain medication without first being in pain. We are often (usually) on preventatives of one kind or another. Often of several kinds. We also take "abortives" - medication that is supposed to stop the migraine. All too often, it doesn't.

For us, chronic pain means that we always have some degree of pain. Always. And, as any normal person would, we will always want to be rid of it. Heck, we would often be more than satisfied just to get the pain somewhere in the realm of a normal level.  The pain in our heads is like being stabbed in the head with the sharpest knife, over and over again. Our brains feel like they have expanded to at least twice the size and ought to explode from the pressure.  Sometimes this pressure goes behind our eyes, making us wish they could pop out...and making us pretty darned sure that it's quite possible that could happen.  All of this is just one aspect or layer of the things our bodies go through.  

With each migraine there are symptoms that will alert us that the pain is coming, like the clouds rolling in. Often weather is a trigger so that storm that you see is what we are feeling.  With every lightning strike there is that echo of pain in our head.  When the storm has passed there is the damage left in its wake.  Again this effects us physically.  We are worn out, exhausted, spent, feeling like we've been hit by a Mac truck...feeling that the driver backed up and did it over and over again... But we can feel that next storm coming, and we have no time to recover from the onslaught of pain before it is here again. This is your life, day after day when you are an intractable migraine sufferer.  No one listens.  You are a prisoner of your own body.  You are called names like lazy for not making more of an effort.  If there were any way to not suffer without having to take meds, believe me, we would do it.  We want nothing more than to be part of life, society, and our families rather than crying, in bed and isolated. Again.

There is no light at the end of the tunnel; there's just more tunnel.  There is no relief, just a break, sometimes, before the next one hits.  This is what drives people to end their lives, not because they want to die, they just want an end to their white-hot, searing pain.  To know that they have some control in their lives, because it is regularly taken away from us by the very people we look to for help - uncaring, under-educated medical professionals.  This isn't a paper cut, and it certainly isn't just a headache!!  These are chronic, agonizing migraines, happening one on top of the other, lasting days and sometimes weeks long.  Sleep doesn't relieve it, if it can be achieved at all.  You are faced, day after day, with this bleakness.  Here is the stupid thing... It really doesn't have to be this way!!!!!!!!

 We need more education for the medical world, more understanding from the medical world.  

There are some in the medical field that believe they are doing us a favor by not prescribing narcotics because of fear of addiction.  There is a physical component to addiction...but there's an even bigger physical component to pain.

Doctor, heal thyself...then, please...heal us, too!

Give us some credit......

Have you tried, rubbing lemons on your head?? It worked for my cousin's sister's mother.   Garlic!!!!That is what you need.   What about Sudafed??.  It is probably allergies.  You just need to get out and get some sun, you need vitamin D. This is just some of the stuff we hear from well meaning non sufferers.

We are chronic!!!  For us the best hope is that we can manage our pain.  We aren't going to get better unless there is a cure or better management. So far there are NO MEDICATIONS PRIMARILY FOR CHRONIC MIGRAINE. There have been no new migraine-specific medications produced since Imitrex in 1992. Botox is a cosmetic treatment that has had positive results in chronic migrainuers.  It was not created as a medical treatment, we just got lucky with that one.  I have an nerve stimulator, it isn't approved by the FDA yet.  It is also not a drug.  There needs to be more research, but that is another blog.


We have tried everything out there that seemed reasonably possible and even those that weren't so reasonable out of shear desperation. We've seen allergists, dentists, chiropractors, acupuncturists, neurologist, cardiologist, ear/nose/throat specialists even reiki practioner.  We have changed out diet, excluded items and added new things.  We've had tests EEG, MRI, MRA, blood tests, some have had spinal taps just to rule out some other condition.  There has been a laundry list of medications month after month with little or no relief.  We have rubbed our bellies and patted our heads while singing the star spangled banner and jumping on one foot.  We would wear an antenna on our head if it would help.  We have done everything we can to not be prisoners of this disease.

If you see someone with this ribbon, they live in agony most of their days.  They aren't lazy, they are suffering.  They aren't drug seekers, they are looking for a reprieve to their pain.


We are  tattered, pain ridden version of our former lives where we are expected to behave as if nothing has changed.  We have to rely on raising awareness to expect to be treated humanely.  If an animal were in the amount of pain that we have to live with, it would be put down, but, because we can function and have opposing thumbs we have to suck it up.  For the record, those of us in agonizing amounts of pain becoming addicted to pain meds is like saying that a healthy person is addicted to breathing.  The pain meds rarely even take the edge of of some of the migraines that we suffer from.  If you had any clue at all, you would never say have you tried........

Prisoner of War

In the news a few years ago, there was a big debate on whether or not torture was an effective way to gain information from prisoners.  

Once, during some of my worst pain, I had to fill out paperwork for a new headache specialist.  I realized the next day that, when I was filling it out, I wrote things that weren't even true.  It wasn't intentional, I just couldn't think through the pain.

This thought comes back to me often.  It makes me think of the Spanish Inquisition and the torture those people had to endure, all to "save their souls".  I can tell you that it wouldn't have taken all that long to make me a convert.  If they want to make people talk, give them chronic migraines, at a "10" day after day, and they will tell you whatever you want, just to make the pain stop.   I don't make light of the pain of others when I say that the only difference between then and now is that we are being tortured daily for no reason at all...

Imagine what it must be like to be a prisoner of war.  Day after day you are held in a cell without light, without contact of other people, and knowing that at some point the pain will come.  You will be suffering the agony of the torture.  How bad will it be today???  When will it happen???   Is there a chance that a day could go by and you could actually feel "good".  Good, in this case, is just a day with out being tortured.  You still bear all the scars from the last session and the one before that; the scars haven't quite healed so everything is still fresh and raw. It is hard to live in the moment because even if there isn't any new pain, there is the anxiety that pain just around the corner, ready to start up once again...that knowledge just won't let you forget.  With any sound or light change, it makes you flinch because it could be a sign of something coming.  Will we get away without pain today???  If I make myself small, maybe it will forget me.  

This isn't the story of someone in a prison camp.  This is what a someone with chronic migraine disease faces day after day, every day.  A day out of the "hole" doesn't mean we are feeling better, just less hellish.  We don't know what it is like to be able to just wake up and go about our day.  We wake up and the first thing we do is assess the damage and pain level.  Everything we do has a consequence. Existing sometimes is all we can manage.  

Being a victim of long term abuse from our own bodies takes a toll on us physically, emotionally, and mentally. We look to those around us to help us, to liberate us from our pain.  Often we are treated as though we haven't been suffering at all. Often this treatment comes from those closest to us. Often, it comes from doctors.  We are not easily treated; we are the exception to the rules.  We want nothing more than to be freed of our prison and return to the life we had before this disease captured us.  Many of us can't. But we'd give anything, if we could.

For Non-Sufferers

Have you ever had the flu?? Have you ever been so sick that when you move you can feel your blood pressure in your head and have the sudden urge to throw up??  Have you ever whacked your shin on a coffee table or been kicked and saw stars??  If you add those two feelings together, then magnify them by 100 and place the pain from your shin in your head.  The pain from a migraine can feel like a knife in your head.  Sometimes it feels like there is so much pressure our heads are going to explode, or we wish they would to feel better.  This isn't a headache!!!

For someone that has Chronic Migraine as a diagnosis, it means 15 or more migraines a month.   They can last for hours or weeks at a time. One can end and another will start.  There is no break.   It isn't something that will just go away or is easily worked through.  In order to get this diagnosis we have seen a specialist and have had MRI's, EEG's and have tried multiple kinds of medications, acupuncture, food eliminations and anything else that sounded like it had any merit.   Things that you can buy in the store or this magical cure that worked for so-and-so's mother or cousin, isn't going to work for us.  We are exceptional people!! We seem to be the exceptions to the rule. Our pain is not typical. We are desperate for a cure!!


There are different types of migraines.  An average person can have a migraine induced by dehydration or starvation and never suffer another. Some people have them more frequently, several times a month.  They are usually lucky enough to be able to take a medicine like Excedrin and go about their lives.  Then there are those that suffer from one or more the list below.

• Abdominal migraine
• Basilar artery migraine
• Carotidynia
• Silent (auro without migraine)
• Ocular migraine
• Hemiplegic 
• Chronic Daily Headache, often the precursor to Chronic Migraine
• Menstrual or Ovulation induced 

http://www.healthcommunities.com/migraine/overview-of-migraine-headache.shtml

http://hemiplegicmigraine.org/learn/what-is-hm/

Some researchers say that once pain has found a route it is more easily transmitted each time after.  Like water flowing, once the path as set it flows easily.  So as time goes on our pain becomes more efficient.  

The migraine is not just only an agonizing pain in the head, it effects many parts of our body.  We have visual disturbances such as blurriness, sensitivity to lights and sounds, confusion, dizziness, loss of words, aches and pains in our muscles  and joints that create stress and tension.  Being in constant pain and then hearing negative comments from the people closest to us, just makes us feel worse.  We already have so much guilt at not being able to accomplish things as we used to.  We mourn our old lives and who we used to be.  We know we aren't as much fun anymore and don't enjoy doing the things we used to.  It bothers us when we have to cancel and let those around us down.  This just compounds the depression we already feel.  Some sufferers have become experts at putting on a good face and may  look great on the outside, but on the inside they are dying.  We would like nothing more than to be a functioning part of society and to be able to hold down a job.  Most of the time we are alone in a dark room, quiet, away from all, in isolation.  In prisons this kind of isolation is considered an intensive punishment, your psyche is effected by being alone for all that time.  We crave human contact.  Most of all we need you to know that this isn't our fault. We are victims, held hostage by this disease.  We look to our family and friends to reach out to us and pull us out from our desperation.  Too often tho, it is slapped away but words such as lazy or accusations about being a drug addict.  We need empathy and understanding. This isn't a hangover, the worst hangover ever still wouldn't touch what it feels like.  We didn't cause this.

Doctors and researchers are doing their best. Chronic migraine is not easily treated. There are hospitals and clinics specifically for head pain treatment and even they have had limited success.  Please know that we are doing everything we can to get back to the life we once had.  We are doing our best to raise awareness, thank you for doing your part and reading this.  Your attempt to understand the sufferer in your life will not go unnoticed.