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........

Denial isn't a river in Egypt

Denial is something that chronic migraine sufferers live with daily.  We pretend that we don't feel as badly as we do in order to get through the day.  We fake feeling good so we can attend parties or other gatherings, or we have to miss them altogether.  

We are living a lie and this takes a toll on us physically.  We push through our pain so that we can be the spouse, caretaker, sibling and/or mom.  There are responsibilities that have to be met and the fact that we are suffering doesn't stop them from having to be met.  So we pretend that we are okay and go about our day.  People see us and think that we must be feeling good if we are out and maybe even look like part of the human race.  They leave us not knowing that inside we are crying and can't wait to be back in the comfort of our dark room.  

We get very good at this.  So good in fact that when we say we are sick people don't believe us or think it couldn't really be that bad.  Just because we are upright and breathing doesn't mean that we are feeling good.  People tend to project their own feelings onto the people they are with.  If you are angry you might snap at someone around you for instance.  When we meet up with someone and they are feeling good they think we must be feeling the same.  Even if we are asked "how are you", we play that question over in our heads before answering.  Do we tell the truth and explain all the things going on in our life, or do we give the short answer because we don't think the person we are talking to really cares to know.  More often than not, we lie and give the short answer "fine".

Worse than the denial we feed ourselves is the the denial from our family and friends.  They can't comprehend that we could be THAT sick EVERY day.  They have never experienced the level or duration or pain that we do, so we might as well be speaking a different language.  They think "how bad can it be, I've had headaches and went on with my life".  This isn't a headache; according to the World Health Organization and the Migraine Trust, "Severe migraine attacks are classified by the World Health Organization as among the most disabling illnesses, comparable to dementia, quadriplegia, and active psychosis  (Shapiro & Goadsby, Cephalalgia, September 2007)."  Imagine dental work with out pain medications or being numbed first.  That is crazy, right????....Yet we are told every day that our pain can't be that bad, and we are just seeking drugs.  Well, we are, but it's to end our pain.  It is real!!!...It is AGONY!!!!  

http://www.migrainetrust.org/key-statistics

Please, we beg you to try to understand things from our point of view.  The pain, day after day, with little or no relief.  It is like being a prisoner being tortured day after day.  Not only does the pain wear on our bodies, it weighs on our minds and spirits.  We need those around us to leave this state of denial that things aren't that bad and join us in reality.