Has anyone tried ketamine infusion therapy? there is a lot of promising work being done with ketamine and TN. I have three doctors all recommending it. It is not covered by insurance and can run into thousands and thousands of dollars. Just curious. Thank you.
Please look on here for ketamine infusion in search tab. .
I Would also read up on studies for neuropathic pain
Side effects
How long does it help the pain
Etc…
Let us know
Have you tried Lidocaine Infusions? I have been having them done in Michigan by Dr. Ken Casey. They have helped me get my life back. I cannot believe how much this has been helping me. He also does the Ketamine infusions but he said its trickier with the insurance and as long as lidocaine works for me, that’s what will will continue. You can look him up under “dr. Kenneth Casey” and he is very good at getting back to you - best of luck and hope you find something that works for you. By the way, Lidocaine is covered by insurance but I also have bilateral facial pain with occasional one sides break thru pain so TN2 mixed with some TN1
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thank you all for the great suggestions and support. My apologies for not checking back sooner. I am toying with the ketamine infusion therapy at USC. Although I have all my doctors and support at UCLA and Cedars, I wound up at USC Pain Center. They are the only hospital that offers ketamine infusion therapy. The Program is hard core. First I met with the Director of the Pain Center after being referred in by Cedars. He repeatedly warned me that I needed to commit to the Program his way and the accepted me as a potential candidate. Next, I met with their Pain Psychologist for a very thorough meeting. I liked the fact that when we met she acknowledged I was in pain and disabled and said we did not need to talk about that. In the end she was worried about my normal anxiety levels as the ketamine causes anxiety as a side effect. She also was concerned if I had the right support at home but in the end she talked with my long-time psychologist and psychiatrist. Next week I meet with their Cardiologist to see if my heart and body can handle the treatment. Pending that all the neurologists get together to give the final approval. During all of this we are jumping through hoops to have my insurance pay for it. When I saw a very expensive Specialist earlier this year she said I would need three days of treatment for $5,000 out-of-pocket. The USC Program is up to a MONTH. Monday through Friday, four hours of IV of ketamine for the first TWO WEEKS. Then they reassess and decide how many days for the next two weeks. It is very intense. I cannot drive, take care of myself or be alone for four weeks. I may have to hire a private nurse. I am a single dad with two teenage sons and two dogs that can't offer the support I need. On Monday I am supposed to get the 32 Botox shots for migraines and a few in the mouth. It is so overwhelming. I am iffy on the Botox and willing for the ketamine. I am still in the middle of a Social Security Appeal. I need to move my family somewhere cheaper. It's just insane.
I would quicly learn about lidocaine infusin first
Try before ketermine!.?
I had one infusion on Dec.15, 2014. It was a 300 mg dose. I was also given something, maybe valium, to sedate me during the infusion. This kept me from experiencing any hallucinations.
Prior to the infusion I had suffered with pain in the top branch of the trigeminal nerve,on the right side of my face, for 23 years. It started after a major surgery in my mid 30's. In 1995 I had 2 Microvascular Decompression surgeries within 6 months of each other. I got no relief from either surgery. It only aggravated the nerve, and made the pain unbelievably bad and constant for 3 months. Then it went right back to the level I had before surgery.
Since the infusion I have not had any trigeminal pain at all. Not ever a twinge. So I'm closing in on two months of relief. I don't know how long it will last, but I will update as time goes by (hopefully a lot of time.)
merigold said:
I had one infusion on Dec.15, 2014. It was a 300 mg dose. I was also given something, maybe valium, to sedate me during the infusion. This kept me from experiencing any hallucinations.
Prior to the infusion I had suffered with pain in the top branch of the trigeminal nerve,on the right side of my face, for 23 years. It started after a major surgery in my mid 30's. In 1995 I had 2 Microvascular Decompression surgeries within 6 months of each other. I got no relief from either surgery. It only aggravated the nerve, and made the pain unbelievably bad and constant for 3 months. Then it went right back to the level I had before surgery.
Since the infusion I have not had any trigeminal pain at all. Not ever a twinge. So I'm closing in on two months of relief. I don't know how long it will last, but I will update as time goes by (hopefully a lot of time.)
So happy for you that the ketamine worked! Where did you have it done. How did you tolerate the infusion, any side effects? Covered by insurance?
Hi Merigold,
I saw your post about the Ketamine infusion. My doctor wants to try it on me. It is great that it helped you. What was the duration of your infusion treatment? How long did you have relief?
merigold said:
I had one infusion on Dec.15, 2014. It was a 300 mg dose. I was also given something, maybe valium, to sedate me during the infusion. This kept me from experiencing any hallucinations.
Prior to the infusion I had suffered with pain in the top branch of the trigeminal nerve,on the right side of my face, for 23 years. It started after a major surgery in my mid 30’s. In 1995 I had 2 Microvascular Decompression surgeries within 6 months of each other. I got no relief from either surgery. It only aggravated the nerve, and made the pain unbelievably bad and constant for 3 months. Then it went right back to the level I had before surgery.
Since the infusion I have not had any trigeminal pain at all. Not ever a twinge. So I’m closing in on two months of relief. I don’t know how long it will last, but I will update as time goes by (hopefully a lot of time.)
Hi Merigold. I am considering ketamine. Can you please tell us how you are doing and where you had yours done? Thank you and I hope your pain is still gone!
How often do you get infusions and how long does the relief last. Do you take any other meds? Thanks.
Here is a bit of my story if you are considering a ketamine infusion and worried about anxiety/hallucinations.
I also had a ketamine infusion but for my OCD in a clinical trial. I had horrific anxiety that goes way before my TN started and i enroll in this university program to see if this could help with my anxiety.
Having anxiety i was really worried about hallucinations, my anxiety is so bad that i avoid even alcohol. Add on top of that the fact that i would be inside an MRI machine during the infusion. Given my anxiety and claustrophobia i knew this was going to be a disaster. The MRI is also not a regular MRI, it was an fMRI and it takes about two hours! i was having anxiety just thinking about this.
Anyways, I was in the MRI machine and the infusion started and i started hallucinating. But it was not disturbing at all! i felt so at peace and one with the universe. At some point it felt like my ego had dissolved (a sensation similar to what i used to experience in long meditation sessions in my younger days when i was into meditating).
Afterwards i felt great and i was free of anxiety for a few days but it all came back. Also it didnt help with the pain (it is a much lower dose i think than the when it is used for pain).
Anyhoo, people’s experiences are different, but i am as anxious as it gets and i had a terrific experience.
H