Monday, September 26, 2016

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 2


  • I was/am still curious if IVIG treatment would be something beneficial to a GBS patient after they are 7 years out from the initial onset. The challenge here is that it would be VERY expensive and insurance may not cover it.
  • It felt like I was just swapping one drug for another. If I was going to try that, I would be considering other routes like medical marijuana and CBD oil. My goals were to find long term solutions and not band-aids that would just cover up my symptoms.
  • One of the main effects of Ketamine is paralysis. HOWEVER, and this is a HUGE difference to GBS patients, it is NOT TRUE PARALYSIS. You feel paralyzed but throughout the process, if you need to move, you can, albeit you will be moving like you are drunk. This is a big thing to me. GBS peeps already did the paralysis song and dance. We are so over that. It is a feeling of paralysis, not true paralysis. I had several panic attacks about this and it is a core reason why I delayed scheduling the treatment.
  • I had been warned by my doctors that since I had GBS, anesthesia can cause a toll on my body and recovery as it is processed through my system. When a healthy person receives anesthesia they might feel like they ran a marathon for the next day. GBS peeps might be looking at having it hit them 2-5 times harder when it comes to the fatigue and  exhaustion during recovery. (This came up when I had my gall bladder removed a few years back.)
  • This was a lot of money for something I had never heard ANYONE in the GBS/CIDP community consider trying or having tried it.
  • Finding out that this was going to be a 6 session treatment over the course of two weeks for around $1,080~ total was physically and financially intimidating. My doctor did not mention this was to be 6 sessions. When we talked, it sounded like it was a one-shot treatment. This curve ball was pretty panic inducing when I called the center to set up my treatment date and that turned into dates. I had prepared myself to say yes to a single four hour treatment, not 6 treatments for a total of 24 hours of paralysis! At that point, I was still under the impression I was going to be fully paralyzed and fully conscious throughout the treatment.
  • It wasn't just about the money for the treatment but the money that I would then not be making as I took nearly 3 solid weeks off from work. (I still worked a few hours here and there as I was able, but nothing near my normal hours I fought so hard to train up to.)
  • This could all be a bust and not even put a dent in my pain.
  • I have heard of extreme exhaustion triggering a relapse of GBS. After 7 years, did I really want to risk relapse for something we didn't even know would work? And that is more rumor/fear but that fear still lingers.
  • I remember how I felt when I had morphine in the hospital during my initial onset of GBS. It felt fantastic and held nothing beneficial for me and I never wanted that feeling of artificial happiness again. It felt great but how it made me feel mentally turns my stomach.
  • Ketamine is known to amplify your emotions. Go in calm, and you ride a steady wave of calm. Go in anxious and the anxiety just spirals. If you are a high anxiety person, they can help calm you down with Versed, given in intervals throughout your treatment.
  • If I started to have a panic attack and I was truly paralyzed, how was I going to be able to ask for help from a nurse? I've been trapped in my body before with no way to communicate, I'm not doing that again. (All I can think of is when the nurse gave me Darvocet and then left the room. I was pretty well paralyzed at that point and couldn't reach a call button when I was about to vomit. I couldn't even yell for help. Once I started, I couldn't do anything but lean my head to the side as I started to choke on it while fighting to try and breathe. A few minutes later a doctor walking in the hall spotted me and called for nurses to help me as he cleared my airway.)
  • There was not much solid material out there relating to using Ketamine as a treatment for nerve pain like this. It is relatively new and basically the only big source of information I could find was a video on YouTube by Discovery Channel about illegal Ketamine Culture. So I got to learn all about how people abuse it (aside from one snippet of a video from The Doctors about it being used for depression.) It was nearly impossible to dig up any videos about its use for nerve damage pain management. 

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