Has anyone tried Scrambler Therapy for neuropathy or for pain?

Hey @rwinney, thank you so much for your kind thoughts. I apologize for the delay in response, I saw your post earlier today and have been literally trying to find the words. I met with two new neurologists at a local research hospital here. They were extraordinarily thorough, almost caught me off guard honestly. For starters, they are suggesting things like topical creams (I've tried before and told them I'm not up for that - tried before, not my thing), medication addition/switch (I also told them I'm not interested here either bc of previous experiences), CBT (I'm leary of, but not totally dismissing), mindfulness (I already do daily) and they want to do a new set of EMG/NCS on all my limbs. I'm meeting with my regular neurologist on Wednesday and my PCP soon after to discuss all this and more. The dystonia is increasing and all my symptoms are exaggerated lately. Not sleeping well at all, pain is still high, I'm highly fatigued 24/7, slurring & stumbling over my speech, nausea is on 'n' off, lots of new sensations etc etc. I need to call the genetic company who did my testing to find out if they tested for HTT, these new guys are really expanding their thinking; considering Huntington's etc. I finally broke down at work the other week bc I just got overwhelmed and couldn't keep it in anymore. It hurt, but felt good to cry and just "get it out". I've really been struggling lately, tbh. I was so glad that my pastor reassured me today that it's ok to be authentic and not ok at times. I needed to hear and receive that. The mental battle is worse than the physical, I think. A lot on my plate....keeping really really busy with school, which I love, but is a huge commitment. Today, I found out a very close friend of mine who's been going thru radiation treatments for liver cancer now has stage 4 colon cancer. My Mom had stage 4 cancer and is 8 yrs in remission now, so I know the outcome is potentially very positive still. But, it's still a shocker and another sword to my heart. Not to mention, I'm not doing good with eating and drinking; it's never been a priority, unfortunately. *sigh*. Thankfully, all the children involved in my life keep me going. ........ To answer your questions, my symptom management feels nonexistent and I have not introduced anything new into my life. I guess you could say that even the encourager sometimes has "down days" and needs a break. My deep desire is still to remain positive and help others in this, but I have also realized that I am incapable of doing so if I am neglecting to take care of my own self. I am deeply hurting and wrestling with some things 🙁

@rivermaya34 Hey, girl. These battles are a package deal, not only physical, but behavioral and emotional. You perfectly found the words to acknowledge your feelings. While you work with doctors and continue ruling possible causes, how have you been handling your mental health? What tools have you found to help yourself navigate rough patches? I feel your stress coming through and I really want you to know how important stress management is to your condition.

As much as talking on Connect is helpful, I caution you to be mindful of pain behaviors. Pain behaviors are anything you do, say, or think that remind you of pain. Pain behaviors access our pain pathways which is not in our best interest. Symptons don't need to be fed more fuel to their fire, especially when they are exaggerated, as you describe.

Unfortunately life happens, right? We can't help what occurs, but we can work on changing our response to it. Your poor friend with stage 4 cancer (I'm so sorry), your quest for health answers, school, pain management. Please give yourself grace, find happy distractions, journal your feelings, find gratitude and journal that too. Have you learned diaphragmatic breathing yet? I find it very helpful along with mindfulness and meditation. Learning to calm the mind and body is one of the best medicines you can provide yourself. These are things that work for me and believe me I have trained myself out of necessity.

I'm proud of you for giving it your all and being invested in all you do. Stay strong, you can get through this. Will you please keep me posted on your last test results and if there were findings?

You got this, my friend.

Hi John,

Need TO KNOW IF I CAN START THE PROTOCOL 525 and continue with my MEDS AND
VITAMINS I HAVE BEEN ON
FOR YEARS ?

Need to know today if all possible.

I RECEIVED PACK SATURDAY PASS.

Whom can I call ?

You be safe and be careful.

I remain
Carlos Sierra

Hi Carlos, I would run the Protocol 525 by your doctor before starting just to be sure there are no concerns with taking it along with your current medications and vitamins. My Mayo doctor wasn't knowledgeable but did run them by a pharmacist who had no real concerns with conflicts with the 2 medications I'm taking for blood pressure. I think I've read about possible problems if you are on a blood thinner due to one of the vitamins in the protocol - Acetyl L Carnitine I think.

I'm not sure what you mean by received pack Saturday pass?

Dear friend .
Thought to have replied. Am following your directions I promise.

Tomorrow am seeing a specialist with medications and it’s , if any effects.side effects.
Taking the bottles and all ok .

blessings blessings…

I remain

@rwinney Well, looks like for the first time in my 32 years of life, I finally gave myself a little grace, as you said. Last night, I had an assignment due for school - after a long, busy day already - and, my body hit a wall. I just couldn't do it, no matter how much I tried to force it. So, I accepted defeat and went to bed. I decided to accept the late penalty for it - which I've been guilt tripping myself about all day btw - and do it when I get home from work shortly. I'm disappointed, but I had no choice but to relent. I guess sometimes you "have" to put your own health and wellbeing first, no matter the consequences for yourself or others. I've tried journaling multiple times in the past, and it's always left me feeling really angry, so I gave up finally. It usually ends in a bonfire lol 😉 Yes, I am very familiar with diaphragmatic breathing, meditation and mindfulness. Unfortunately, I don't do them often enough, only when I "need" to in the moment. So, yesterday I met with my regular neurologist and we had a really good chat about everything. More testing in my future, but I'm glad he's always so proactive and truly my advocate. Yes, I will keep you posted on all that. As always, thank you for the encouragement 🙂 Hope YOU are doing well too! Keep fighting the good fight!

@rivermaya34 Good for you on the grace thing! You'll hopefully find the reward in doing so in order to preserve and manage symptoms better. You know, it actually makes you stronger and more in control than you think. At first it may feel like defeat, because it's something you're not used to doing, but in time, with practice and repetition, you will develop a more powerful self-awareness that benefits you physically, emotionally, and cognitively. Atta girl! 💪 I know it's hard and frustrating, but keep up the good work, one step at a time

I used to be very angry when journaling. It shifts all those harbored angry thoughts from your brain to paper as a form of release. Maybe try limiting your journal time to 5-10 minutes each day and counter the angry thoughts with positive gratitude. These practices don't happen overnight, it takes time, patience and belief like anything else. Here's some info I learned and follow from pain rehab that might be helpful for you:
https://connect.mayoclinic.org/comment/689809/
Onward and upward with more testing. It sounds like you have good doctors in your corner who are committed to the search and communicate well with you. Excellent! You know where to find me if you need me...until then I will wait to hear on any new findings or revelations.

The good fight is worth fighting! 😊

Does anyone have a list of facilities in the US that provide Scrambler Therapy? I just had a trial treatment. I saw no doctor and the operators didn't seem to have a medical background. Mostly good @ sales.

What is scrambler therapy

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