The Sprial Down

    After linking with Barby Ingle and the Power of Pain Foundation, I began an new journey.  Barby was a supporter and advocate for Ketamine Infusion Therapy.  I learned that the medications I had been on had contraindications from each other and were all fighting against each other.  There was also a huge debate of the Naltrexone and the use of it in CRPS/RSD patients.   Barby pointed me in the direction of well know RSD physician and diagnostician Dr. Phillip Getson.  Dr. Getson is in my hometown of Marlton, New Jersey, and after all I had been through, it was a last hope for help.  Head to ketamine and see Dr. Getson.  November 05, 2013 I was on a plane headed to New Jersey to see Dr. Getson.  My dad was there with me and despite the pain and all the failed attempts at treatment I was keeping hopeful that he could help.   On November 07, 2013 Dr. Getson confirmed the RSD diagnosis and did my pre-ketamine evaluation.  It gave me new hope, the only issue now was financially figuring out how to get me the treatment.  Being another off label use, treatment is expensive and to do it in New Jersey as the protocol required would cost a lot of money and time.  We had an answer and a treatment path, it was just getting there.
      When I returned home, I began doing more volunteer work with the Power of Pain Foundation, talking about my journey with Thoracic Outlet to RSD.  During this time I was really struggling with the depression, anxiety and suicidal ideation.  I continued to be open with Barby and she became a big sister and a best friend.  She expressed her extreme concern for me having been on Naltrexone.  She knew of other patients who had had issues and even committed suicide as a result of taking the drug.   I began doing my research.
       Naltrexone in its approved FDA form is a drug used as a last resort for alcoholics and narcotic and opiate abusers who have tried rehab and have not been successful.  The drug alters the brain chemistry and makes the patient unable to drink or use opiates and narcotics without making them violently ill.  It is being used in low-dose 4 mg or less in patients with RSD/CRSP, Fibromyalgia, MS, ALS, and several other neurologically based diseases.  I was on 15mg a day and went off without titrating down correctly because I could not get treatment.  We knew at the point I was at that this was the cause of my mental and emotionally spiral down.  Naltrexone in its prescribed form is rarely used because of its high rate of suicide and inability to be effective.  There is also no extent of medical research showing in such low doses, its a successful treatment or part of treatment protocol for neurological disorders.   I knew I had chosen to be a research guinea pig, I lead to believe CRPS/RSD was so rare that there was little choice but to try what I could.  Being in the pain I was in, I was desperate.  Looking back, as hindsight is, I wish I had really done my research before trying the drug protocol.  But we cannot live with regret.  We can only learn and teach others not to make the same mistakes.
     As I learned more, I continued to struggle with emotional and mental spirals.  There was more than one occasion in which I wanted to die.  I did not know what else to do, between the pain and the lack of access to treatment and care I was not coping.   To make it worse, I did not have support my from my now ex-boyfriend or his family.  They did not believe the diagnosis or the issues I faced.  It was suck it up and get back to life and they also never recognized my previous mental illness of depression.  I was fighting a vicious circle.  
     Working with the foundation and with Barby gave me hope and kept me moving forward.  There was hope, there was ketamine, it was getting to it that had to happen.  But, it was going to happen.  By March 07, 2014 the spiral had hit an all time low.  After being desperate for Ketamine, and everything else in the past, the come down off the list of medications, I hit rock bottom.  That night after drinking non-stop trying to numb everything.  I tried to swallow a handful of medications that I did have left from California along with using a lot of the nasal ketamine.   I wanted to die.