I must add one more disclaimer. Although my outcome wasn't what I hoped for, I know that others have had wonderful outcomes with this treatment and from the clinic I went to. I sincerely hope that if you're considering this treatment, you won't base your decision about whether to receive the treatment on my writing in this blog.
One of the things with which I contended as I contemplated treatment was uncertainty about what to expect. I'm the kind of person who needs lots of reassurance and to know what's going to happen to her. But since my doctors had never given Ketamine to a blind person, they could only give me information based on other patients. Everyone who goes through medical treatment feels some uncertainty about medications, treatments, side effects and the effectiveness of the treatment they choose. But one of Ketamine's well-known properties is that it causes visual hallucinations and, no one really knew what would happen if I underwent a therapeutic Ketamine infusion. I tortured myself with thoughts of not being able to stop hallucinating or becoming completely unglued and unable to function. Looking back on those thoughts now that the treatment is about a month behind me, I realize that that wouldn't happen with a treatment which doesn't actually put one into a coma, but with my anxiety issues, I was very good at inventing frightening scinarios.
We had a few other concerns, specifically my blood pressure and my anxiety during the treatments. My primary care physician suggested a protocol I could follow with my blood pressure medication, but fortunately I never needed it. My anxiety was more of a challenge, however.
The Ketamine Experience
I know you're curious about what the treatments were like. It's important to understand that the doctor giving the infusions is very safety conscious (which I prefer). So before they hooked me up to the Ketamine, we had several tasks.
The first is something I can't believe I'm discussing openly. Once I'd signed paperwork and my parents had signed insurance information and a form stating that if I couldn't make decisions, they would, I headed for the rest room. One of the things they have all patients do was to wear Depends because people react differently on Ketamine. To be honest, I never had that kind of trouble, but wearing the Depends made me worry about the potential for relieving myself inappropriately for the next three days.
Once that was over, I was taken back to my little treatment room. The rooms were nice but small and they had small gurneys which were pretty short for me and my long legs. They used some kind of wedge to elevate my legs since laying down with my legs elevated is the only position I find remotely comfortable. The first day I had an IV put in. The doctor tested my pain thresholds and then gave a small amount of medication to manage anxiety and Ketamine's side effects . Once I began to feel the medication working, the infusion was started.
One of the things which surprised me was that I didn't feel the Ketamine right away. As I've said, I didn't know what to expect, but the doctor explained that it would be about fifteen minutes before I'd be able to feel it. It's hard to describe the feelings I experienced while on Ketamine. I think the most important thing was that the sensations and hallucinations I experienced were mostly body based. I frequently felt as though I were wrapped in tin foil or foam, depending on the minute. I sometimes saw colors, but I'm not as convinced that these were hallucinations so much as sunlight hitting my eyes and other objects at various angles and my expecting to have a visual hallucination.
Another sensation I often experienced is pretty tough to describe. Mainly, I found that I experienced energy and vibration. People talk about auras or "being in touch with the vibrations of the universe". As a Christian, I struggled to understand that concept but I started to understand it better while I was drugged up. I don't wish to go into the theology of this right now, however it was quite an experience.
One other problem I had was anxiety and disorientation. It was easy to feel scared, lost and disoriented, especially when sensations were different. At higher doses of medications, even my hearing became affected. Music, speech and other sounds sounded like they were coming through tin foil or wax paper. Finally, my sense of touch was affected, for example, Julio (my guide dog) is a yellow lab with soft furr, but he felt more like a coarse haired German Shepherd. Needless to say, all of these things were quite alarming for me.
You're probably wondering how I handled these three infusions. I found that little things made a huge difference. Here is my list of things I found helpful and would recommend to anyone going through these infusions, but especially someone with a visual impairment.
- Touch: One of the most comforting things for me was to have someone touch or hold my hand. I don't have RSDS/CRPS there so it caused no pain. I wouldn't normally ask for that kind of thing, but Ketamine decreased my inhibitions. A touch on the hand helped me feel more grounded and safe.
- Knowing I was safe and that people understood my disease. This is helpful in any part of life, but having medical professionals who spent three days with me allowed me to learn more about my pain and other challenges. Many things I thought were odd are actually part of my disease and it was helpful to understand this. I also found that I learned so much from other patients and I feel a bit less alone now. That sense of knowing that other people are going through similar things and I'm not alone was therapeutic in itself. This gave me hope during the infusions.
- Mouth swabs: Since Ketamine is an anesthetic drug, it isn't safe to eat or drink before or during the infusions. The clinic hadd lemon flavored mouth swabs to help with the dry mouth.
- Chap Stick: Again, this was something I never would have thought of but it did help my dry lips during the infusion..
- Eye drops: For some reason, Ketamine seemed to keep my eyes open which is something I don't do because of my tear ducts which are underdeveloped. I needed my eye drops more than usual.
- Lavender essential Oil: I get it in a Roll on and use it to help with sleep problems and anxiety. Since I could not take meds for panic attacks, the Lavender really helped if I got freaked out.
For some reason Ketamine made my spasticity worse. These heat packs are extremely comforting for me.
- A prayer, a friend and a kind word: Need I say more? I am so grateful that both of my parents were so supportive during the whole week, but especially during the infusions. They frequently acted as my hands and feet when mine were too unsteady.
- Julio: I am so glad Julio was with me the whole time. His presence was healing and comforting.
I'm planning to write more about Ketamine's effects in further posts, but I hope this helps patients and doctors understand Ketamine and blindness. I also hope these writings are useful to the larger RSDS/CRPS community.
RSDS/CRPS Treatment Center
Where I received my treatment. I can't thank them enough for their kindness and caring.
Reflex Sympathetic Dystrophy Syndrome Assocation