Migraine

Okay Droolie, the letter to the ambulance company is done and when I have more energy, I WILL write the letter to the hospital. I don't want it to be poorly written because I don't have the energy to put into it.

I am thankful to be held accountable. So often I talk about writing letters and even write the most fantastic ones in my head but never actually put them on paper. Knowing I had a whole forum of migraineurs counting on me to speak up for them, for us, was the motivation I needed to get 'our' voice out there and protest the appalling treatment that I received. The more medical providers hear, the more they'll know and we have a big world to cover between us.

It's amazing that I am always on top of writing letters to providers who show excellence and compassion, which I know is helpful as well, but I need to speak up more when I am angry as well. Otherwise these (so called) professionals will continue in their ignorance and poor practices.

I guess in retrospect, sadly, I write the letters for the good care because that so often surprises me, and I don't the other letters because from experience, and from reading here, subpar treatment for migraine seems more expected and "normal". How skewed and disgusting is that?? Fortunately, the doctor's office I have settled into has been consistently wonderful, but emergency care still remains detestable. (with FHM strangers often call 911 on me) No wonder I have developed anxiety when I here an ambulance.

Boy do we have a lot of work ahead of us. Imagine a day, maybe for our grandchildren, where superior care is the norm, and assumptions aren't made just because providers can't see the illness.

Count me in!!

Good for you!

A seven smilie salute for you...

Hey Hope,

You have a great point. It would be great for our grandchildren to receive superior care. Another plus would be when health care providers don't make judgements during the first twenty seconds of our appointment.

AMEN TO THAT!!

I will never forget getting my medical reports from my current neuro and on the first visit he wrote, "She tells a convincing story of..." Fortunately we have come a long we since then, so I just laughed and shook my head when I read it. Frankly I think the actual convincing came when he did an Occipital Nerve Block and got to see a HM live and in person. There again it took seeing for trusting and believing. Scared him pretty good too, and HE called 911 on me. We have had a different relationship ever since. Too bad it took that.

Hello Vertical!

Excuse my ignorance, but what is an Occipital Nerve Block and an HM?

I admire you for having the courage to write a not-so-pleasant letter. I will be interested to hear how things work out for you. Perhaps you could share your letter with us, so we could learn from your example? I don't currently have a migraine or headache specialist, because I can't afford one. I am already drowning in debt from medical bills and a lawyer recently came to my place of employment and served me with a warning to acknowledge the debt. The letter I got was for a bill that my deceased husband had incurred right before he died. They are trying to make me pay for it, even though I wasn't livng with my husband at the time and hadn't been living with him for seven years.

Anyway, that is an entirely different subject. Let me know how things work out for you. It sounds like you and your current neuro are doing much better these days. I was also wondering why they have to call 911 for you. Did you have stroke-like symptoms? That must have been so scary for you!

Take good care and stay in touch,

Kay

HM is for Hemiplegic Migraine, and yes it comes with stroke-like symptoms and sometimes unconsciousness, hence the 911 calls. THey used to be scary for me, but I am pretty used to them now. I only get scared now when something new or extra severe happens. Also, if I am in a public place some 'in charge' person will site liability issues when my friends try to tell them not to call. We've learned it is easier to go with the flow than to stress and argue. I have also been drug tested several times which used to make me really angry until I learned to see it from their point of view.

Occipital Nerve Blocks are shots that are given in the back of your head, usually with cortisone and lidocaine in it. It is intended to kill acute pain and/or hopefully prevent it from recurring for awhile. The reason it triggered me was that the amount of liquid that went in put a lot of pressure in my head and then they had me lay down on ice packs which added to the pressure and voila...migraine.

In regards to your off comment remarks, I heard on a financial show that a current wife isn't even responsible for her husbands medical bills after his death, they can only sue his estate. I would seriously check into some legal advice, sometimes you can at least get a consultation, and a cheap letter from a lawyer to the biller might go a long way.