[Sophie0513]

The small fiber neuropathy that the doctor believes I have is suggesting Ketamine infusions.

To anyone who is familiar with SFN and ketamine, is this something that may be able to calm my feet down?? The pain is to the point that I can't wear shoes or walk or stand for very short periods of time?

Any thoughts would be appreciated

[Littlepaw]

Hi Soph,

I can only report on CRPS and ketamine but owing to similarities between that and SFN I'm chiming in.

Ketamine is hopefully going to calm things down for you. Keep in mind it doesn't always work immediately for everyone. Some users on the CRPS forum have reported immediate relief. In others the pain relief was gradual. Mine falls more in that category, it wasn't earth shattering at first but the results seemed to build over time. This is what my doctor expected so I wasn't worried. I feel relief during the infusion but also things in my foot change for several days after. The cumulative effects took a while, it was several infusions down the line that I really started to improve.

Ketamine has a cascade of effects in that some of the "nerve talk" is altered at the spinal level a few days out according to studies. There are immediate and late effects as far as inflammation and cell signaling from what I've read. As long as you are tolerating the infusions, try to stick with them at least the first full week. If you tend towards nausea ask for the max amount of zofran added in. Take peaceful music with you and a soft blankie. If you are uncomfortable or things are too weird during your infusion they can slow down the drip for you.

I posted some time ago about my ketamine infusions on the CRPS board. Maybe it is time for an update. Hang in there ok? And if you aren't getting in a pool, see about access to one either through ordered aqua therapy or a local YMCA, community center or gym. I learned how to walk again in the pool because it was the only place I could comfortably do so. The buoyancy allowed me the motion of walking without the strain and being in the water has all kinds of circulation boosting effects. You'll be surprised what you can do in there that you can't do on land with hurting feet.

[Cliffman]

Originally Posted by Littlepaw

Hi Soph,

I can only report on CRPS and ketamine but owing to similarities between that and SFN I'm chiming in.

Ketamine is hopefully going to calm things down for you. Keep in mind it doesn't always work immediately for everyone. Some users on the CRPS forum have reported immediate relief. In others the pain relief was gradual. Mine falls more in that category, it wasn't earth shattering at first but the results seemed to build over time. This is what my doctor expected so I wasn't worried. I feel relief during the infusion but also things in my foot change for several days after. The cumulative effects took a while, it was several infusions down the line that I really started to improve.

Ketamine has a cascade of effects in that some of the "nerve talk" is altered at the spinal level a few days out according to studies. There are immediate and late effects as far as inflammation and cell signaling from what I've read. As long as you are tolerating the infusions, try to stick with them at least the first full week. If you tend towards nausea ask for the max amount of zofran added in. Take peaceful music with you and a soft blankie. If you are uncomfortable or things are too weird during your infusion they can slow down the drip for you.

I posted some time ago about my ketamine infusions on the CRPS board. Maybe it is time for an update. Hang in there ok? And if you aren't getting in a pool, see about access to one either through ordered aqua therapy or a local YMCA, community center or gym. I learned how to walk again in the pool because it was the only place I could comfortably do so. The buoyancy allowed me the motion of walking without the strain and being in the water has all kinds of circulation boosting effects. You'll be surprised what you can do in there that you can't do on land with hurting feet.

Littlepaw the aqua therapy sounds like an excellent suggestion. Thanks for sharing.

Ketamine was suggested to me as well but not sure how much it helps with SFN. Since everyone is so different I suppose the only way to know is to try it.

Cliffman

[Sophie0513]

Originally Posted by Littlepaw

Hi Soph,

I can only report on CRPS and ketamine but owing to similarities between that and SFN I'm chiming in.

Ketamine is hopefully going to calm things down for you. Keep in mind it doesn't always work immediately for everyone. Some users on the CRPS forum have reported immediate relief. In others the pain relief was gradual. Mine falls more in that category, it wasn't earth shattering at first but the results seemed to build over time. This is what my doctor expected so I wasn't worried. I feel relief during the infusion but also things in my foot change for several days after. The cumulative effects took a while, it was several infusions down the line that I really started to improve.

Ketamine has a cascade of effects in that some of the "nerve talk" is altered at the spinal level a few days out according to studies. There are immediate and late effects as far as inflammation and cell signaling from what I've read. As long as you are tolerating the infusions, try to stick with them at least the first full week. If you tend towards nausea ask for the max amount of zofran added in. Take peaceful music with you and a soft blankie. If you are uncomfortable or things are too weird during your infusion they can slow down the drip for you.

I posted some time ago about my ketamine infusions on the CRPS board. Maybe it is time for an update. Hang in there ok? And if you aren't getting in a pool, see about access to one either through ordered aqua therapy or a local YMCA, community center or gym. I learned how to walk again in the pool because it was the only place I could comfortably do so. The buoyancy allowed me the motion of walking without the strain and being in the water has all kinds of circulation boosting effects. You'll be surprised what you can do in there that you can't do on land with hurting feet.

I actually read your posts about your experiences with Ketamine infusions!! Thanks again for your insight into this!!!

[StevenD]

I should be having Ketamine treatments for SFN in the next 2 to 4 weeks. I will post my results as a thread.

One user said he uses it for CRPS and is happy with the results. If the literature on Ketamine infusions is to be believed, it can have long term affects on reducing pain for any type of nerve pain. Since it is systemic, it should help CRPS, Fibromyalgia and even those poor sufferers who have said they have full body neuropathy.

Of course it is rarely, if ever, covered by insurance. From what I have seen, the cost per treatment (IV Infusion) varies from $400 to $2000 each, and you will probably need 5 treatments to start followed at least one booster every 3 months or. To that you have to add the cost of travel, unless you are lucky enough to live near a clinic.

The clinic will probably be Ketamine only, but msu also use it to treat other conditions, most often PTSD or depression which has not been successfully treated by any of the standard anti-depressants. Supposedly, it can have a very quick and long lasting effect, not just the euphoria of the drug itself while you take it. (Abusers on the street called it Special K).

[Sophie0513]

Dear Stephen

Did you have to go thru any pretreatment testing (Psych eval;cardio workup)?
Are your treatments covered by insurance?
What treatment protocol are you having done?? 5!day vs 10 day etc

I wish you the best with your treatments and I hope they bring unsome relief. Will you be posting your progress in the PN threads?? Looking forward to hearing your experiences!!!

[StevenD]

Originally Posted by Sophie0513

Dear Stephen

Did you have to go thru any pretreatment testing (Psych eval;cardio workup)?
Are your treatments covered by insurance?
What treatment protocol are you having done?? 5!day vs 10 day etc

I wish you the best with your treatments and I hope they bring unsome relief. Will you be posting your progress in the PN threads?? Looking forward to hearing your experiences!!!

I have already answered some of this. No, it is not covered by my insurance. Yours may be different but I doubt it. What I have done so far is filled out some forms on their web site and sent them a copy of my diagnosis, in my case, from a pain clinic.

After reviewing my documents they had me fill out an online psych evaluation. It seemed like 200 or more multiple choice questions, often asking the same thing several times: Do I hear voices telling me to do things, do my friends tell me I have problems with drugs or alcohol, are people out to get me, etc. I have also paid $100 for a final evaluation and consultation prior to treatment. That should be on Monday via Skype so I don't have to drive up for it.

I should know a lot more on Monday, including when I might start the infusions. The place I am using is the Ketamine Wellness Clinic in Mesa, AZ. It is the closest to me (a 2 hour drive) and far cheaper than a similar clinic in LA I contacted first. The number of treatments can vary by the person and progression of the disease, but at this clinic, I believe their standard protocol is to give 3 initial treatments over 3 days. If successful, I think they will follow up with 2 more treatments 2 weeks later. After that, it is on an as needed basis with the length between treatments hopefully growing to 3 months or more. The clinic charges a fee of $750 per treatment for pain. $750 per 3 months is far less than the cost of Lyrica but, of course, most insurance would pay part of the cost for the Lyrica.

But, as I said in the earlier, note, I should know more on Monday and I will post my results, whether good or bad, once I complete treatments.

[Sophie0513]

Originally Posted by StevenD

I have already answered some of this. No, it is not covered by my insurance. Yours may be different but I doubt it. What I have done so far is filled out some forms on their web site and sent them a copy of my diagnosis, in my case, from a pain clinic.

After reviewing my documents they had me fill out an online psych evaluation. It seemed like 200 or more multiple choice questions, often asking the same thing several times: Do I hear voices telling me to do things, do my friends tell me I have problems with drugs or alcohol, are people out to get me, etc. I have also paid $100 for a final evaluation and consultation prior to treatment. That should be on Monday via Skype so I don't have to drive up for it.

I should know a lot more on Monday, including when I might start the infusions. The place I am using is the Ketamine Wellness Clinic in Mesa, AZ. It is the closest to me (a 2 hour drive) and far cheaper than a similar clinic in LA I contacted first. The number of treatments can vary by the person and progression of the disease, but at this clinic, I believe their standard protocol is to give 3 initial treatments over 3 days. If successful, I think they will follow up with 2 more treatments 2 weeks later. After that, it is on an as needed basis with the length between treatments hopefully growing to 3 months or more. The clinic charges a fee of $750 per treatment for pain. $750 per 3 months is far less than the cost of Lyrica but, of course, most insurance would pay part of the cost for the Lyrica.

But, as I said in the earlier, note, I should know more on Monday and I will post my results, whether good or bad, once I complete treatments.

Thank you Steven! Keep us posted!! I just started the required cardio requirements..I had an EKG and a halter monitor..next will be an echo cardiogram of my heart and a tilt tablet test. Also I have to get a psych evaluation. My treatments most likely won't start until March!! I will probably post my experiences as well.

[StevenD]

I am sorry to report 6 days after having a 5 hour treatment, I am seeing no long lasting benefits from the ketamine and do not plan to continue them. I might have temporarily gained a little less pain and a little less sensitivity to cold, the increase in tingling out weighed any benefit. 6 days later and I think I am back to where I was before I started them.

While the treatments do not appear to help me, I can understand why anyone else may want to try. As we know, different treatments can work for different people. But I would say, don't do this treatment without trying more traditional treatments first. If not emotionally stable or you don't have a trusting person to sit with you during the treatment, I think she should avoid this type of treatment.

As I said, each day's treatment lasted about 5 hours. Very quickly after starting the Ketamine in the IV, I began noticing strange feelings. It is feels like an out of body experience. In some ways you feel more like an observer than a participant. I could still control most things but very slowly. If I wanted to scratch my ear, I would first have to think "which hand will I use"? One was more constrained by the wires and tubes they had me connected to. After deciding on a hand, I would slowly move my hand and scratch the ear. It wasn't that I couldn't do things faster, I just felt that I should do things slower so I don't screw anything up. This is especially true when I wanted to be aided to the bathroom. I felt like Tim Conway's "little old man" on the Carol Burnett Show.

They offered to dim the lights, but I kept my eyes closed most of the time anyway. At times I would open them and look at my wife to bring myself back to earth. A nurse is there at all times checking your vitals or any body reactions that indicated you were in distress. Despite occasional of getting a little disoriented, I always felt that all I would have to say is "Please STOP" and everything would have been unhooked immediately.

I got a little nauseous and they gave me meds for that. I never got so distressed that they gave me a benzo or anything like that. All in all, it was a quite unpleasant experience. It was worth a try, but I will not be going back.

[Sophie0513]

just saw this today...I was sorry to read that you did not get any relief from the treatments! I was sincerely hoping that you did! Thank you for posting an update like you promised...l was sincerely disappointed to read this...please take care

Originally Posted by StevenD

I am sorry to report 6 days after having a 5 hour treatment, I am seeing no long lasting benefits from the ketamine and do not plan to continue them. I might have temporarily gained a little less pain and a little less sensitivity to cold, the increase in tingling out weighed any benefit. 6 days later and I think I am back to where I was before I started them.

While the treatments do not appear to help me, I can understand why anyone else may want to try. As we know, different treatments can work for different people. But I would say, don't do this treatment without trying more traditional treatments first. If not emotionally stable or you don't have a trusting person to sit with you during the treatment, I think she should avoid this type of treatment.

As I said, each day's treatment lasted about 5 hours. Very quickly after starting the Ketamine in the IV, I began noticing strange feelings. It is feels like an out of body experience. In some ways you feel more like an observer than a participant. I could still control most things but very slowly. If I wanted to scratch my ear, I would first have to think "which hand will I use"? One was more constrained by the wires and tubes they had me connected to. After deciding on a hand, I would slowly move my hand and scratch the ear. It wasn't that I couldn't do things faster, I just felt that I should do things slower so I don't screw anything up. This is especially true when I wanted to be aided to the bathroom. I felt like Tim Conway's "little old man" on the Carol Burnett Show.

They offered to dim the lights, but I kept my eyes closed most of the time anyway. At times I would open them and look at my wife to bring myself back to earth. A nurse is there at all times checking your vitals or any body reactions that indicated you were in distress. Despite occasional of getting a little disoriented, I always felt that all I would have to say is "Please STOP" and everything would have been unhooked immediately.

I got a little nauseous and they gave me meds for that. I never got so distressed that they gave me a benzo or anything like that. All in all, it was a quite unpleasant experience. It was worth a try, but I will not be going back.