Quantcast

Ataxia Support Network

tDCS surprise


#1

Hi All,

I never thought it even vaguely possible that I would get alot better from one treatment But today I drove into town (40 mins) in traffic when I haven’t been confident to drive more than 10 mins for years, let alone in traffic. And it was raining.

See the pubmed study Cerebello-spinal tDCS in ataxia: A randomized, double-blind, sham-controlled, crossover trial. https://www.ncbi.nlm.nih.gov/pubmed/30135258

It was for my Day 2 treatment of 10. I hope this post is OK and I hope others might find it helps them.


#2

Not only is it OK to post this but the possibility of a door opening is extremely exciting. I love the fact that a research facility is possibly making some headway. I’ll be honest, I’m not medically knowledgeable, so I really didn’t understand the descriptions much. But just to see that a possible progress is being made, well…

I didn’t see any contact information. How do we contact the people in charge? Thanks again.

EDIT: I see that they are not recruiting any new test subjects any more. Please keep us informed.


#3

Anything thats a rare disease they wont do reasearch on it. Thats the problem


#4

I just grovelled to my local brain center to replicate the parameters in the original study. Anywhere that performs tDCS should be OK. I’m in Perth, Australia and the original study was in Italy I think. It was pretty well documented so it has been OK to follow. Best of luck.


#5

I hear what you’re saying Bobby. However, sometimes when a treatment or something is developed for one illness, it works as well on our rare illness. That’s what happened with Viagra. It was created for one thing but worked on something else. :grinning:


#6

Agree. Often drugs developed for one thing work better for another. I think thalidomide was developed as a mild sleeping pill that was safe during pregnancy and of course it had terrible effects on developing babies. I remember reading recently it is used for leporacy and multiple myeloma with good success. I have also heard good things about tDCS…


#7

Sounds hopeful. Thanks for sharing and keep us posted!


#8

https://clinicaltrials.gov/ct2/results?cond=&term=tDCS&cntry=&state=&city=&dist=

There seems to be a lot of hype/studies on this at the moment.
Keeps us hoping!


#9

Yesterday was my 10th and last treatment. Still solid and can still drive. Much more resilient. Don’t know how long this will last but fingers crossed.


#10

Sounds promising.If I may ask some questions?

  1. Which unit/model are you using?
  2. how long is each session?
  3. What settings/ voltage?
  4. Where are you positioning the leads?

There are no known short term or long term side effects, and there appears to be many (800 or so) trials for tDCS. So I might give it a try.


#11

Hi Kylee_anne,
I too am in Perth - Kingsley to be precise.

I understand the Perth Brain Centre tDCS device - is that where you went?


#12

TAKE-HOME MESSAGE

  • Noninvasive stimulation of cerebellar and spinal cord structures has shown promise in the treatment of ataxic symptoms, and this is interesting particularly in the field of neurodegenerative ataxias, which lack effective therapies. The authors of this randomized, double-blind, sham-controlled, crossover trial combined cerebellar anodal transcranial direct current stimulation (tDCS) and spinal cathodal tDCS in patients with ataxia (including spinocerebellar ataxia type 2, cerebellar variant of multiple system atrophy type C, and other syndromes). The mean score on the Scale for the Assessment and Rating of Ataxia changed from 20.1 at baseline to 15.8 at the end of the 2-week stimulation period, with benefit sustained at 1 month (15.1) and 3 months (16.1). A similar pattern was seen for the International Cooperative Ataxia Rating Scale score and secondary measures. The greatest improvement was seen in patients who were less affected clinically and functionally.
  • The results suggest a promising potential role for this therapeutic approach in treatment of neurodegenerative ataxia, with further research warranted.

– Codrin I. Lungu, MD


#13

Unit/model I don’t know. All your other questions are documented in the referenced study.


#14

Yep I went to the Attadale clinic.


#15

Has anyone used tDCS device that’s available through Amazon?


#16

I would have to say here I’d be very sceptical about such a device from Amazon. Any such treatments should be conducted under medical supervision IMO. A TENS machine for muscular tension is one thing, but tDCS is something altogether different and not something I’d be suggesting under any circumstances without a knowledgeable practitioner.

Merl from the Moderator Support Team


#17

Agreed. I was just asking if anyone had any experience.


#18

Yes, Shoaib I do have some experience with tDCS. I purchased my unit from “The Brain Stimulator” https://thebrainstimulator.net/. They were very nice and I got all information on where to position the electrodes, voltage, etc. by going to my current favorite site https://clinicaltrials.gov/ct2/home. There is also a bunch of information on the web by using google. Checking my diary, I used the device twice for 3 weeks with no luck. I gave up on using the device but will look into starting up again.


#19

Thank you for sharing your experience. Sometimes, hearing about true experiences are necessary then being politically correct.


#20

Your welcome! I’ve tried them all! If you have any additional questions, please post to me.