My First Ketamine & Versed Infusion
Update: first a quick update on how I am doing. I have been getting sicker the last couple of months. I am so exhausted and haven’t had the energy to post or reply. I have been crying in pain everyday as usual. Can barely walk most days but still I am thankful I can walk again. I am told they think I have intra-cellular dehydration. Just having a rough time like I know many of you are too. We will get through this.
After my last visit to UCSF my pain management doctor said I have already tried pretty much every pain killer on the market so as a last resort for those with severe chronic pain he recommended Ketamine infusions. My long-acting pain killer, morphine (150mg per day) barely takes the edge off and for me my Norco is the only break-through pain killer that has helped with taking the edge off also. But they barely drop my pain from a 10+ down to a 8-9 for a couple hours if that.
I have a high tolerance for pain so my 10+ is probably a 20 on most sufferers pain scale. I’m the type who cuts my head open bleeding all over and doesn’t even feel it that much. But after having RSD/CRPS , herniated discs that felt like hot lava in my neck and a bad kidney stone attack and passing it then I knew what bad pain was. I know people who cut their finger and think they are dying a say it’s a 10 on the pain scale so I know everyone’s scale is different.
For my infusion they wanted to start me on a low dose to see if I can tolerate the med and didn’t have a bad reaction so next dose is 175mg then up to 200-500mg as we progress and the knock out dose. I had zero hours of sleep the night before the infusion. I went into my own private infusion room and laid down for my IV. The nurse had to give me 3 pushes (3-4mg) of Versed hoping that would calm me and put me to sleep along with the 50mg of Ketmine but it didn’t and I kept squirming around. I have twitches with my neuro lyme so I can’t sit still too long especially during MRI’s or CT scans. It gave me the nitrous oxide feeling like when you used to get the gas at the dentist during a tooth pull. Ketmine and versed are basically meds used to sedate you during surgery. The room look “fuzzy” but that was about all I felt.
After the infusion was done I stood right up and we went back to our hotel room. Now I am not sure if it was due to a lack of sleep and being heavily sedated and having versed but I did feel less pain like maybe a 6 on the pain scale for about 2 hours. The pain slowly came back and hit me hard the next day. Today I was avoiding going to the ER the best I could. It gets scary when you feel so horrible and afraid something may go wrong but you are afraid to go to the ER because they treat me like crap. I will get my next infusion soon. But I am back to a 10 plus but it was so great to not feel as much pan for those 2 hours. Ketamine is not for everyone you usually need to have RSD/CRPS or chronic severe pain for many years to be considered for it. The Ketamine IV cost me $700 out-of-pocket.
I am taking a one month break from my IVIG infusions for my PIDD. My immune subclass numbers only went up a few points in 7-8 months but that means they are slowly doing something. So I will most likely be on them for 3 more years for now. Each infusion is $500 out-of-pocket but I am hoping to get them covered 100% soon. So that is a good to see they are doing something even if it is baby steps.
- Stay strong my friends and never give up.