Category Archives: health

AAAAHHHHHHH, Chronic Pain, Collapsing Star, Migraine, Trigeminal neuralgia

It’s all in the presentation…

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When I was in college I took a marketing class. In this class I learned that during the 1950’s a man invented a closed plastic mousetrap that would capture the mouse and kill it as effectively as the open wooden mousetrap, all without the mousekiller having to see or touch the mouse. This new and improved mousetrap was only a few cents more than the wooden trap.

He went out of business.

You see, despite being designed to be disposed of, the trap looked fancy enough that housewives across the U.S. were cleaning out the traps and reusing them, they looked to expensive to throw out. As cleaning out a dead mouse is revolting, they quickly went back to the wooden mouse trap we all pretty much use today.

It’s all in the presentation. If the marketers of that mousetrap had made it look less attractive, we could be using their trap today.

I have had a paradigm shift this week in the way I view my illness.

I have had migraines since I was 12. My family has felt sorry for me, my friends have commiserated. I have dealt. Then my trigeminal nueralgia came along and for the most part, we all treated it like a different version of the migraines. Something really unfortunate that I just have to cope with. Something without any real cause that needs medicating.

Until yesterday. A ha ha ha until yesterday.

Yesterday I met with a neurosurgeon. First of all he made it clear that I have a condition that is different from the migraines. It’s an operable condition. There is something physically wrong with my trigeminal nerve.

Then he explained my options. I can either have gamma radiation rays aimed at my brain to permanently disrupt the connection between my nerve receptor and my face, or I can have inpatient brain surgery where they cut a hole in my head and insert a pad between the blood vessel and my nerve. Both have a chance of causing permanent numbness ranging from occasional tingling to complete “I just had a root canal” numbness. Neither is a permanent fix. Apparently my TN will always come back. There is a third option but I am too young, I can burn the nerve off completely. There is a 100% chance of complete face numbness with that one.

Suddenly I wasn’t dealing with migraines any more. I wasn’t facing just migraine management and pain control. I was facing brain surgery and a physical nerve condition that has been treated for over 50 years but is still largely not understood. No one has any idea why the trigeminal nerve suddenly decides to fire randomly throughout the day and send shooting pain through my face. Some think it can be caused by age, some think head trauma, some are trying to link it to a specific virus, but as of now, they do not know.

All they do know is they can stop the shooting for a while by cutting open my head or shooting me full of gamma rays.

Okay. Gamma rays. It’s an 85% effectiveness rate versus a 95% effectiveness rate. There is a small chance I could be permanently numb, but I like to believe there is a small chance I become the incredible hulk. (Though Dan says I would be the credible hulk because I would back my claims up with citations.) Two days of feeling not so great and then I see if there is any improvement.

I can do the GammaKnife twice and the surgery once.  If those don’t work, I can burn the nerve.

Honestly, I am freaking out. Now I am crying and scared.

In 18 days I ship off to Michigan to be hospitalized for 24 hour in-patient treatment. I am looking at brain surgery. My cardiologist is testing for PFO ( a condition where a small hole in the heart is the cause of migraines.).

The presentation has changed. I can no longer believe I am simply managing a worsening condition. I now really feel as though I am falling apart.

Collapsing Star, Healing, health, Just me, Mygraine

The collapsing star…

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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.

Chronic pain, Do not taunt happy fun ball, Migraine, Mygraine

Not the ride I was looking for…

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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!)