Tuesday, May 1, 2012

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........


  1. How about banana peels on your neck! Seriously, it was recommended in the Ann Landers column a long time ago! lol. The sad thing is that I tried it, too! Because, as you know, no one takes your pain seriously if you haven't tried everything.

    Thanks for all you do, Cat, to raise awareness!


    1. LOL...of course!!!...banana peels why didn't I try that one...that surely must be the one!!

      Thanks Sandy!!!!!....I'm thrilled that I'm able to do something to help out!!

  2. That's GREAT Cat :-) thx for putting stuff like this out there!

  3. Wow- you are so right. I tried everything you mentioned. I even paid this guy $120 to put a staple in each ear to reduce my pain! Even family members who has seen me suffer so still suggest simple things such as allergies.

    1. I'm a participant in a nerve stimulator took 4 surgeries to get it right, and my brother told me I looked like Frankenstein (gee thanks for that) and then still asked after all that if I had tried Sudafed (an allergy med).......I know they mean well but.....

  4. You hit the nail on the head with this one girl. Wish each and every person out there could/would read this!!

  5. I think the one thing I tried that seemed a bit crazy was rubbing a green apple on my forehead. Nope. Didn't work. Ended up in the ER that night bc I'd waited too long to take my Imitrex and pain meds to follow. This is no game, but we will play any idea put out there. No matter how crazy it may seem.
    Has anyone ever heard of drinking ginger tea? I was told to try adding real ginger to a cup of hot water. Keep the rest of the ginger in the freezer so I could use it again and again. Nope. Didn't work.
    I'm sure people mean well, but it truly gets annoying sometimes. I just want to yell and tell them that unless they have a TRUE CURE, don't ask me if I've tried this or that.

  6. I just stumbled on this blog through your invitation Catherine the other day, so I'm slowly catching up. GinTucker is right on the mark by saying, don't ask me unless it's a TRUE CURE. How many times can we listen to so many useless remedies. I find myself now just rolling my eyes and thanking them for their concern. Just the other day on my facebook page a friend posted, 'Ease headache pain by rubbing a drop of Rosemary or Lavender oil onto the back of your neck. From a friend! Hugs!'. Oh, if it were only that easy we would all be singing and dancing with our ears flopping in the breeze like Snoopy.

    If all these simple suggested remedies like bananas, cranberry juice, ginger and every spice known to man worked than why are we poisoning our bodies with man-made-drugs that don't work for us half the time.

    I've been a long time Maxalt user with somewhat great results until last year when the drug just pooped-out for me. My new neurologist started me on 'Rizatriptan 10MG Tab.' which is A Gen Eq: Maxalt. Been working great 97% of the time. My insurance company, UHC suddenly stopped me from using it. They only wanted me to use Maxalt. The reason was $$$. My doctor fought with them for over nine months and finally we won. Now for a good laugh, I received a letter stating they will accept my use of Rizatriptan until the year 2036.

    Tomorrow i will go for my third treatment of Botox. Every 3 months i get 31needles in my forehead and back of neck. It's very painful and i shake the whole time until it's over. My doctor says I'm very sensitive to the injections. I was wondering if other Botox users find these needles painful too.? So far my migraines are easing off gradually every month.

    My neurologist at University of MD (Maryland) has been a blessing to me. I've always had most of my pain in the back of my head and in my eyes. This doctor thinks she found why i'm getting so many headaches a week...around 3-4 times. Three weeks ago i went through again a MRI/MRA. They found i have an infection in both eyes and on the right side in the back of my head there's a small patch which indicated it was leaking blood into my brain. Tomorrow they will schedule me to have me go under some more intensive MRI's to see exactly what's going on. I'm mentioning this only because I've been a chronic migrainuer since the early 80's and NO ONE has ever looked closely inside my head as this doctor has.

    Hopefully no one has these kinds of findings but this might just be a TRUE CURE for me and one that you might question your doctor to look into for you.

    Take care and hope your all living painless days_rick.