elsa (@elsa)

Is your doctor Dr. Linda Bluestein? I visited the WI Integrative Pain Specialists web site. I may consider visiting there to see what they might offer me.

I have an appointment this Wednesday at Mayo's Pain Clinic. I plan to ask them about the combination of oxytocin & ketamine troches. I will also ask them about a "high dose steroid pulse". A 3-day steroid treatment was offered me by my MS doctor. I've postponed it for the time being because I hate steroids (I take 40mg prednisone occasionally when I have an upper respiratory infection or when my asthma flares up.)

I am very sorry to hear about your Tarlov cysts. I can only imagine your frustration and worry over getting the treatment or surgery you need. I wish you all the best in getting an appointment with Dr. Feigenbaum. I hope the surgery is successful and provides you with relief.

Where in WI do you live (if I may ask. If not, I understand!)? I am in Madison.

All Best,

Elsa

qball2019: Thanks very much for your reply. It was illuminating.

I had never heard of an oxytocin or ketamine troche. I imagine the oxytocin hormone helps a person to relax and imparts a feeling of well-being. How do you feel taking a combo of an oxytocin troche & ketamine troche? Does it make you sleepy or does it affect your memory/cognition?

I've been living with severe neuro pain for 9 years. Early in the progression of the pain, I would occasionally go to the ER seeking relief. A time or two I was given a ketamine injection which relieved my pain for 12-18 hours. I was grateful for even that small window of relief.

I am going to be seen at Mayo's Pain Clinic next week. I hope that they will take a fresh look at my symptoms and try to understand, with more precision, what is causing the pain to have spread and gotten more worse. Of course, I also hope they can offer me a treatment to lower the pain. I will ask them about the treatment you now follow.

This week I received a 2nd lidocaine infusion. I had the first one, 350mg, a couple weeks ago and it did nothing. This week they increased the dose to 500mg. It hasn't helped either and unfortunately, 500mg is the maximum dose they'll do.

Are you seen at the Mayo Clinic? If so, which one?

Thanks again for your message. I'll let you know what happens at Mayo. I wish you all the best, and hope your pain will be better controlled.

–Elsa

Thanks very much for your response; it was enlightening.

I used to get steroid injections at L5-L6 but they stopped working. I do take 1800 mg/day of gabapentin. I also take CBD oil and low-dose naltrexone. I'm sure the gabapentin helps a little but I'm less sure about the efficacy of CBD oil and low-dose naltrexone. For 8+ years I also took morphine and hydrocodone but it's now been almost a year since I've taken any opiates.

I gather that lidocaine infusions are a pretty new pain therapy. Here's a 2017 article about them:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5323245/

I haven't tried massage but hope to do so. I've also tried dry needling which has been helpful for the neuromuscular part of my pain.

I wish you all the best with managing your pain.

Oops. There's a typo in my previous reply. I meant to write that lidocaine, NOT ketamine, infusions last 1 – 2 weeks. I don't know anything about ketamine infusions. Sorry for the confusion.

Lori Renee, Thanks for sharing what you know. You might want to inquire about ketamine infusions. I'm told they last 1 – 2 weeks and take about 1 hour to do. Depending on the type of insurance you have and the level of pain care you can get through your local provider, infusions might be preferable to using lidocaine patches. I imagine patches aren't all that easy to keep solidly attached to your feet.

Yesterday I had an appointment at my local pain clinic (UW Health in Madison, WI). Each time I visit, they have me color code a diagram of where my pain is and what kind of pain it is (e.g, yellow = aching, blue = burning, red = stabbing, green = tingling, etc.) I colored in the entire back of my buttocks and hamstrings on both sides as both aching and burning. That kind of diagram is new for me because in the past my pain was much more localized. The pain PA who I saw said that that type of diagram, i.e., broad, expansive areas of burning pain, along with a description of the pain being in the skin, was what she typically sees from her pain patients who have MS. I have MS and I also have had chronic neuro-skeletal-muscular pain due to a disc injury and subsequent microdiscectomy in which the surgeon tore the dura.

The PA at my Pain Clinic ordered a lidocaine infusion which I will be scheduling. That said, I came home and did a bit of research online and found a brief article titled “4 Infusions that can help relieve chronic pain” https://www.painnewsnetwork.org/stories/2017/10/22/4-infusions-that-can-help-relieve-chronic-pain.

The 4 possible infusions are: 1) ketamine 2) Immunoglobulin 3) lidocaine and 4) stem cells

I subsequently sent a message to my pain doctor as well as my MS doctor and PCP. The MS doctor and PCP said that was a question for the Pain Clinic. The Pain Clinic wrote back and said: “the UW Pain clinic doesn’t offer ketamine, immunoglobulin or stem cell treatments. You are welcome to explore those options.”. This is so TYPICAL of healthcare at places other than Mayo. No real coordination between departments. Neurology refers me back to the Pain Clinic. The Pain Clinic only does lidocaine infusions so they don’t try to answer the question or try to call Neurology and find out exactly what types of infusions are actually possible between the Pain Clinic and UW Hospital which serves neurology patients. Ugh! I requested an appointment with Mayo Neurology but was turned down (even though I’ve been a patient in the past and have graduated from Mayo’s Pain Rehab program). I plan to persist and see if my PCP can call Dr. Keegan (the MS doctor who’d seen me in Mayo Neurology) and explain to him the kind of wall I’m running into locally.

Anyway, I’m writing to ask if any of you have been any experience being treated for severe neuropathic pain in the skin with ketamine, lidocaine, IVIg or stem cells? I have MS which, of course, is an autoimmune disease so I suspect IgIV might be appropriate but I really don’t know.

I'm a 64 year old woman who had been taking morphine (anywhere from 60-120mg/day) and hydrocodone (up to [3] 5/325/day) for 8 years. In March of 2018 I went through Mayo's Pain Rehabilitation 3-week program. It was the best thing I ever did for my pain! I was able to get off the opiates as well as 2 benzodiazepines (for anxiety) and methylphenidate (an ADD drug). My pain is fairly severe, ranging from a "2" on a very good morning, to an "8/9" on bad days. I now manage my pain through exercise, mindfulness, diaphragmatic breathing, and distraction. Also I still take 1800mg of gabapentin/day.
Recently I tried CBD oil for 10 days and feel that it's marginally helpful in pain reduction. I know that marijuana (THC & CBD) is much more effective for me but alas, medical marijuana is not yet legal in WI.
If I can recommend anything, it would be that you try to be seen at Mayo with the intention of qualifying for their 3-week pain rehab program. They will help you come off the morphine. Actually, I titrated down and off my morphine under the supervision of my pain MD prior to going to Mayo. I did not find it difficult to get off the morphine because I did it slowly under the advisement of my doctor. Even if you don't do Mayo's Pain Rehab program, I would advise you not to stop the morphine on your own. Do it under a doctor's supervision and it will go much smoother!
I was, and still am, amazed that I no longer use any opiates! I do not feel any worse for it, in fact, it has given me my life back! If you can wean yourself off the morphine first, before trying CBD oil, that would be the best course, I think.
Here is the link to Mayo's Pain Rehab Center as well as a link to stories from patients who completed pain rehab at Mayo:

https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/services

https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/patient-stories

I wish you all the best!

Jennifer, thank you VERY much for this additional information. I know that my SI joint is often out of alignment because I see an excellent chiropractor who often puts the SI back in place. It's very helpful to learn about Dr. Bartleson and about Mayo's SI joint clinic. I think I'll call Mayo's Neurology Clinic back tomorrow and offer to send them my most recent spine MRIs which were done in September, 2018. I'm very glad your surgery fixed your pain and that you're regaining muscle & core strength. I work out 3 to 4x weekly, using machines and free weights to strengthen my upper body and my core. I also go to the warm water pool where I do exercises to strengthen my legs and core. I really appreciate your remarks. I'll let you know if I get my Mayo appointment and how it goes (assuming I get in). Warm Regards!
–Elsa