lmfclcls's Journal

I'm surviving, but not living.  I feel as though I’m in my own personal hell and nobody can relate.  Yes, I know, I am one of millions and millions who are suffering, that is why I call this MY personal hell, we all have our own.  Please don’t say "I understand".  It's my belief that no one can understand anyone else’s pain.  It’s just not possible. 

My back pain worsens.  The pro-disc artificial disc replacement surgery I had last August was a complete failure. I’m in more pain now than I’ve ever imagined in my life.  I've learned that because of the arthritis and degeneration on the vertebrae it was installed between, the surgery should have never been done on me - I was not a candidate.  Yes, I know - I know - sue the doctor.  Well, that's not going to do a damn thing for the pain I’m in, nor is it going to pay the mortgage this month. Not only did the surgery worsen my back pain, but it re-aggravated my spinal cord injury and I’m in constant nerve pain.  The best way I can describe it is that it feels like there are thousands of pieces of broken glass being crushed into my legs and the bottoms of my feet at all times.  I've tried ALL the nerve pain medications.  Yes, its official - my neurologist declared there are "NO" meds I haven't tried.  None have worked to relieve the pain and there is nothing, even experimental, left for me to try.  And yes, I’ve used all the unconventional eastern world treatments as well.  I cut my spinal cord and there are broken bone pieces still in it, we are not talking mild nerve damage. My doctor considered a spinal cord stimulator, but given the extensive family history of heart disease and the fact that I already have beginning signs of it, I cannot have one put in, because you CANNOT be defibrillated during a heart attack if you have a spinal cord stimulator. 

I've developed a resistance to pain meds in that each and every type of them now triggers a migraine.  I have to decide which I want, horrible back pain or a migraine.  If I dont take my pain medication, my back pain is beyond anything that can be described and if I take it, I have a migraine within an hour.  I've tried every narcotic, opiate, patch, nerve block, root block, pain clinic, chiropractor out there.  Nothing helps with my back pain except narcotics and narcotics trigger migraines.

Worse yet is that my "chronic” migraines have evolved to "daily intractable migraines".  Daily - yes, I get a migraine headache each and every day.  I vomit, lie on the floor holding my head and at times hide in the closet to get away from light and sound.  Intractable means they are not responding to any type of treatment.  Like my nerve pain, I've reached the end of the list on migraine meds.  I've tried every prescription, every herb, supplement, meditation, relaxation, acupuncture, diet changes, hypnosis, prescriptions, opiates, morphine - my headaches do not respond. 

The latest attempt to reduce the number of migraines was another try at Topamax, not only did it have disastrous side effects, but it triggered flash back memories of sexual abuse that took place when I was a child.  Memories I buried years ago and now its as if I’m there again, so my PTSD is at an all time high. As a result of all this, I’ve become very depressed.  I've been diagnosed with major depressive disorder.  I cant take any anti depressants because anti depressants cannot be taken with triptans, the class of drug one of my migraine meds are in, or it can cause a potentially fatal condition known as serotonin syndrome. My neurologist referred me to a headache center in New York, one of three in the world of its kind that deal with patients who have headaches as severe as mine and after reviewing my records, history and previously tried treatments, they decided my case is too severe for them, so they referred me to an inpatient hospital in Michigan that my insurance does not cover.

I used to tell people that I go to my neurologist’s office in tears, well I still do but now he's in tears with me because he feels so bad about not being able to help me. The increased nerve pain has aggravated the reflex sympathetic dystrophy of my foot and its getting very hard to put any pressure at all on it.  I cant take much more than a few steps without being in tears.  I'm having more panic attacks than I’ve ever had in my life and my insomnia has worsened.  I used to be able to sleep 2 to 3 hours a night and was thrilled with that.  Now its only 1 to 1.5 hours a night.  I'm in far too much pain to get to sleep and yes, I've tried multiple sleep medications and alternative remedies.  If I take narcotics to calm my back pain, it triggers a migraine.  So I either have to stay awake with a migraine or indescribable back pain. I want to say I lie awake and cry, but I don’t.  And that scares me.  I've become numb to emotions. I don’t cry, I don’t laugh, and I don’t feel anything but physical pain.  I love my children and for them, I will survive. And in final I will say – that our *&^%$@! Government has decided that all this does NOT make me disabled and they expect me to work!