Category Archives: Mygraine

The collapsing star…

Hatchet told me I am a collapsing star.  When I feel well I expand out into the universe, reaching out to everyone in my life and pulling them to me with energy and excitement, questions and concern.

When I am hurting and scared I pull inward, hide inside myself.  I don’t reach out to anyone, and I find myself lonely and afraid in a dark pool of my own making.

When I am hurting, I don’t want to reach out and ask for help. I know I can’t expect my friends and loved ones to know I am hurting. They have lives going on, things that demand their attention with the loud energetic voices used by stars who aren’t collapsing in upon themselves. They are also likely quiet tired of me being in this state. It has been years since I could answer the question “How are you?” with “I am great.”

My voice has grown quiet. Literally. It actually hurts for me to speak up. I noticed this last night at coffee as I tried to join in the conversation of my friends. I lack the ability to do so. My voice cannot be made loud enough to break into the bustle of lively conversation without causing me significant discomfort. That realization has driven me deeper within myself today. Even when I am included, even when they reach out, I am isolated.

Today I am in my sanctuary. As Dan is still mid process of moving in things are scattered about and it is not the calm cave of peace it normally it. However, it is mine, it is whole, it is quiet. It has my cat and the dog. There is warmth and subtle light.

I have set my healing schedule. I will walk once a day, long walks. Far distances with or without people and pets. I will walk to improve my health. I will study and read to improve my mind. I will wait for the medication to improve my head. I will make all my doctor’s appointments. Cardiologists, Neurologists, Anesthesiologists, etc. I will call the clinics and insurance people. I will keep up with my laundry and chores. I will cook and eat healthy meals.

When my children are home I will read with them or play games with them. I will spend time each day focused on each of them. I will carve that out.

I will save the dark hours of the night for despair. The hours when the pain wakes me up or prevents me from sleeping. The hours when I become certain my life will not improve beyond these small accomplishments. Despair best suits the night time. The darkness helps it settle into your bones. The morning always brings with it a little hope and a renewed dedication of purpose.

As scared as I am to attend this pain clinic, I hope it gives me back my voice. I hope I come home with the tools I need to manage this lifelong disability so I can stop being a collapsing star and once again reach out to the people I love with excitement, exuberance, and joy.

Not the ride I was looking for…

The day began as they often do, with a migraine and a moan.  Today I grabbed my D.H.E. injection and headed downstairs to shoot away the pain and get started with my morning so I could walk into work and enjoy the sunshine.

By 11:30 it became clear walking wasn’t going to happen.  The headache was gone but I was feeling weak and shaky from the shot.  Still, headache gone, time to go to work.  Dad dropped me off at noon and I said hello to the office for the first time in several days.

Then about half an hour later I began to experience chest pains.

Not again, I thought.

You see last week I missed work because I spent Monday in the E.R. with chest pains which started 12 hours after taking my D.H.E.

Calmly I wrote down the time they started and when I took the medication and began trying to work again.  Then I began to feel a sensation of pain move down my left arm and into my hand, and my arm went numb.  I marked the time and the sensation and called my doctor.  No answer.  I went back to work.  About fifteen minutes later I started feeling hot and clammy and my hands began to perspire.  Shit.  I called my doctor, marked the time, made notes.  No answer.  I went back to work.  A bit later I began to feel nauseated.  I called my mother.

Which is how I ended up in the back of an ambulance on my way to the ER for the second time in one week.  My mother wisely suggested, and then ordered me to call 911 for an ambulance.  I called and they were there fast.  I was impressed.  I barely had time to alert my co-workers to the fact that I would be leaving for the day, much less that four paramedics and two EMT’s were about to swarm the building and cart me off on a gurney.

I was rather embarrassed, honestly.  I prefer my illness to be more private than that.

Once in the ambulance I got aspirin and Nitro, and off we went to St. Joe’s for the tender mercies of the day staff.  They were wonderful.  They took every possible test and precaution and sent me home with the admonishment to never again take D.H.E.

Apparently it caused vascular spasms in me, resulting in decreased blood flow to my heart that was painful, but not damaging in the same way a heart attack was.  However, there were clear that there was no good to be had in continuing to take it.  I have to agree as the triponin test I took last week at the E.R. was 0.00 and this week’s was 0.015, it seems there is a slight increase in enzymes associated with heart attack.  I want to stop this ride while my numbers are in the “still negative” for heart attack range instead of waiting to see if I can raise them any further.

So tonight it’s cookies, tea, and sleep.  And OK, a little weep.  After years of not finding a solution to my migraines I am upset that the one drug that seemed the most promising tried to kill me in other ways.  I was so hopeful for this one.  (Damn homicidal medications!)

A holistic approach to migraine treatment

I’m reeling.

Photo on 1-15-15 at 2.41 PM #2
This is me, reeling.

I met with my new doctor this week.  Dan took me to see her and when we got to the door I thought they were closed.  You know, because the lights were muted, there were no fluorescent lights at all, it was quiet.  There was no loud music, just a super low classical playing. The walls were painted a dark brown, with a matching carpet. All the decorations were dark in color. It was like a cave.  A lovely muted cave.

The doctor’s assistant is named Novella. I’m taking it as a sign.  The doctor herself bears my godmother’s name.  Another sign. That and her last name is Lane, as in path, as in a new path.

She is a whirlwind.  My hour-plus appointment with her was spent learning I do have migraines “Just migraines, I don’t know what all this other crap they have been going on about is, cluster and tension headaches go away, you present with persistent migraine”, that I do have trigeminal neuralgia, that I will need surgery, and that I struggle with feeling happy not simply because I am in pain but because the migraines literally sap my brain of the chemicals it needs to keep me happy.  In other words, she took me completely seriously, had done her homework in advance, didn’t rush me, and developed a plan.

A PLAN PEOPLE!! I have a PLAN!!!

I left overwhelmed, reeling, happy, and in tears.  I am not sure why the tears, except that having someone validate me instead of throwing meds at me was wonderful.

Treatment is going to be a full time job. I try to remind myself that my headaches were a full time job, but my brain is currently trying to rabbit.

I am happy, however, that I will be treating this headache with a doctor who believes in approaching migraine from all aspects of life, instead of just medication.

So, headache diary, check.  Food diary, check. Exercise diary, check. Medications, check. Therapist, check.

Oh, and the other thing? She asked Dan in with me so he would know what he was dealing with too. So, supportive and knowledgable boyfriend, check.

The brain surgery is out-patient, which is so futuristic to contemplate that my mind wants to rabbit whenever I think about someone rooting around in my head with a steel crochet hook and then sending me home.

The scary part is that I am back on the Topomax.  This is a big trust thing for me.  She swears she has a medication to counter any cognitive disfunction resulting from the drug, but I am terrified.  Last time I was on it I lost 40 pounds in three months and forgot words like “table” and “glass”.  Dan has offered to conduct daily word game tests to track any potential side effects.

The other scary part is knowing that the future holds a week or two or more at this ultra intense migraine clinic in Michigan if we can’t get it under control here.  She kept telling me that the clinic used I.V. meds to find a solution in this really excited voice, like I should respond as though she were telling me the clinic used 8 hours of massage a day.  I do not find I.V. meds nearly as enticing as massage.  However, it’s good to know there is an end game here, you know, that isn’t MY end game.

She spoke 8 million miles a minute and made notes for me that look a lot like pidgeon feet on sand so I am still trying to remember the entire picture, but those are the high points. (And low points. And silly points.)