Wednesday, May 30, 2012

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!) after day...week after week...with very little respite.
Add to that the idea that we have been to multiple 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!

Tuesday, May 1, 2012

Mindsplitters and other Migraine Fun: Give us some credit......

Mindsplitters and other Migraine Fun: 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 Sud...

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........