Suspended in Animation

It's been a few weeks since I've posted anything.  I have had a difficult time this month.  Not only has my migraines not gotten any better but I was diagnosed with having myofascial pain syndrome as well.  Isn't that great?!  I was devastated when I got the diagnosis.  How much more pain am I supposed to endure?  I can't even get the migraines under control.  How am I going to deal with this on top of it?  For a brief moment I thought that I found a doctor that would finally help me.  He was a pain management specialist and he offered treatments that my neurologist would never give me.  The first was a C2 stellate ganglion block where he would numb the nerve itself and inject steroids.  The procedure is somewhat invasive where it's done in a treatment room under flouroscopic guidance (x-ray).  I had a migraine that was an 8/10 that day.  After the nerve block my neck was stiff and I couldn't turn it very well.  I still had the migraine.  In fact, it grew worse over the course of the day into the next.  I was in so much pain I swore the it was off the charts.  Over the following three weeks until my next follow-up, I still had daily migraines.  Nothing really changed. 

Video of Stellate Ganglion Block 


Now, he said on my very first visit that if that didn't work that the next thing would be to do RF Degeneration and if that didn't work then getting a neurostimulator would be the next step.  So when I went back to his office last week and I told him that nothing has changed since the procedure.  He basically said that he's not a headache specialist and that there's nothing else he can do.  That I need more aggressive treatment.  He mentioned the neurostimulator again but this time he made me feel as though he didn't want to touch that subject with a ten foot pole.  He gave me an orbital nerve block above my left eye and sent me home.  I went to my car and cried.  Why?  Why does it always end like this?  He said he could refer me to Dr. Ducic at Georgetown University Hospital but I told him that he doesn't accept my insurance.  He said that's too bad.  You think?!

Now I was back to square one.  I had to find a headache specialist.  None are in my immediate area and all but one accept my insurance.  So, I submitted the information to my primary for the referral and of course, Kaiser denied it.  As soon as I get the denial letter in the mail I'll be appealing it.  It shouldn't be this hard to see a specialist.  It just makes dealing with all my conditions that much harder.  As far as the myofascial pain syndrome (MPS) goes, I'm still getting used to having it.  I'm taking Cymbalta now to help treat the pain and to help better manage my depression and anxiety.  I was originally taking Wellbutrin SR and Celexa but after dealing with such disappointment it was getting harder for me to pull out of the very depressed states I was falling into.  I can't do the things I'm used to without something hurting.  Driving makes my ankles and wrists hurt.  Typing this blog post is killing my wrists and fingers.  I can't even hold my cell phone without my fingers and wrists hurting.  My left elbow is constantly in pain and I just love it when I get shooting pains up and down my legs and across my chest.  I'm also trying to get Kaiser to pay for a cranial stimulator.  That's another story for another day.

I'm in day four of a migraine attack and today brings severe ear pain to the party.  I'm very tired and feeling stuck in the same situation over and over again.  It's like my life is being drawn onto a cel and pain is dictating each scene.  I truly feel as if I'm suspended in animation.  Trapped in a world of pain with no way of finding the way out.  Every day is Groundhog Day for me.  It's pretty difficult to stay positive when each day feels just like the one before.  Disappointment is the shadow that follows me everywhere.  For once, I would like some good news.  I hope I get it sooner than later because I don't know how much longer I can hang on to hope.

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Headache & Migraine Disease Blog Carnival - My Scary Migraine Episode Moment

The scariest migraine attack that I have ever suffered was last summer.  I have been going through a tough time emotionally and my depression was getting the best of me.  I was tired of having all the responsibilities of taking care of the house, kids, and my husband all while being in pain daily.  On that particular Thursday, my husband decided that it was a good day to give a reprieve.  He put me up in a nice hotel for the night.  He was off for the next two days so the kids were covered.  I already had a migraine that was a 7/10 from crying most of the morning.  But I was looking forward to the peace and quiet I was soon to enjoy.


After picking up my rescue medications, I checked into my room.  I had all that I needed for food and drink thanks to the pantry in the lobby (and to hubby for getting it for me).  After everyone left I settled in and began to de-stress, or at least try to.  By that evening, however, my migraine had reached a 10 and my meds weren't working.  I had a horrible night and couldn't enjoy my one free night.  So I decided to stay another night hoping that the attack would cease so that I could finally enjoy my freedom.


As the day wore on, the migraine became more and more severe.  My husband and kids were coming with dinner so that we could eat together.  By the time they got to the hotel with the food, I was in so much pain that death seemed like welcome relief.  I most certainly surpassed 10/10 on the pain scale and was nearing 15.  Slowly, my left arm began to go numb followed by my hand, fingers, leg and foot.  I was getting very scared.  I've never experienced numbness during an attack before.  Was I having a stroke?  It isn't far fetched to think so since migraineurs are at a higher risk for stroke.


My husband and kids were all worried for me so he called the advice nurse and got me an appointment with urgent care.  It's at least thirty minutes from us so that was the longest car ride ever.  The numbness was getting worse and I was getting more scared.  It was really freaking me out.  All I could do was cry.  My sweet daughter rubbed my head the whole way to try and ease my pain.  When we arrived I could barely walk the pain was so unbearable and I couldn't really feel my left side.  As we waited to be called, a woman with a screaming toddler sat across from us.  As if the fluorescent lighting weren't enough, the loud cries from that kid made it feel like grenades were going off in my head.  We were finally called back after what felt like an eternity, which was only five minutes.  I was taken to the triage room and was helped onto the bed.  The nurse began asking me questions that I don't remember.  I was eventually wheeled to an exam room and seen by the doctor.  We went through the usual 'what do you take and when', blah, blah, blah.  She went through my extensive medication history and decided that since I've been on everything for me to have an MRI done and see a new neurologist.  I was given a cocktail of Toradol, Demerol, and Phenergan.  After ten or fifteen minutes, the numbness was wearing off and the pain began subsiding. I was finally getting relief.


After about twenty minutes I was cleared to go home.  I was groggy and hungry from the narcotics and also in a state of shock from the craziness of the night.  Of all the 25 years of having migraine, this attack was the most severe and the scariest.  I was dumbfounded by the numbness I was feeling.  What kind of migraine was this and what else could be going on?  It all felt surreal to me.  We finally got back to the hotel after midnight.  My husband left my daughter to stay with me to keep an eye on me during the night.  He and the boys left and I ate a little and went straight to sleep.  I woke up the next morning a little groggy and my pain was at a 2-3/10.  My two days of freedom and no stress turned into two days of horrific pain.  Needless to say the goal of de-stressing wasn't accomplished.


A few weeks later I had the MRI which came back clean as I expected.  The neurologist recommended alternative treatments such as acupuncture, chronic pain management, and Botox injections.  Out of the three, only the chronic pain management classes has helped.  I'm still trying to find a treatment plan that will work.  Thankfully, I haven't had an attack like that one since but I did have one that landed me in the hospital for three days.  I still have daily chronic migraine and I'm still trying to push through.  I experience many days of excruciating pain, all of which feel worse that the one before.  But I soldier on trying to stay as positive as humanly possible for someone in my position.  I never want to experience that night again and through the grace of God nothing serious was wrong.  I'm grateful for that and for each day thereafter, even if they bring me pain.







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