Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 03-10-2012, 11:22 AM #171
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Hello Ballerina
you cannot imagine how grateful I am for all your hard work and dedication to this community, I'm sure I speak for everybody, empathy is a gift like none other. I'll try whatever protocols I can and post my results.

Thanks for reassurance about the machine, it's a godsend (some published online trials have referred to tDCS units like NeuroConn's Eldith, very expensive). The only other tDCS device I saw that might fit the bill, affordability wise, could be Mindalive's Oasis ***, but the Ativa looks like a robust professional device, my instinctive first choice too.

If I get well, I'll follow your lead and help others.

Nick
Hi Nick,

Just another suggestion. If you try tDCS I suggest you reverse the protocol and do both sides. Don't know if this applies to tinnitus but since there seems to be a link with chronic pain it is worth a try,

Hope this helps.
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Old 03-10-2012, 11:53 AM #172
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Default cathodal dlpfc

"Bifrontal transcranial direct current stimulation (tDCS), with the anodal electrode overlying the right and the cathodal electrode overlying the left dorsolateral prefrontal cortex, has been shown to suppress tinnitus significantly in 30% of patients"

It not very good idea to use this protocol its may work with trinnius bud have side effect turning down DLPFC may couse depresion and sleapines.

I try it 2 times with 1mA 30mins (current density 55uA/cm) to determine a effect if some one use my devece with switched contacts.I ged very sleapy
and hard fousing this last about half a day.
*the setting is little different - cathode on L-DLPFC and anode on right supraorbital area (above right eye)
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Old 03-10-2012, 01:25 PM #173
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Wink Wow

The success is amazing. I just read an article in my newspaper today about using the tDCS for depression. I have to look into this device for pain. I have already had ACDF C5-6 C6-7, have additional issues above the fusion and issues in my lumber region besides RSD in both hands and feet. I may have missed this response but where did you get the device and can it be put through any durable medical or regular medical insurance. Looking forward to the research.
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Old 03-10-2012, 02:31 PM #174
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The success is amazing. I just read an article in my newspaper today about using the tDCS for depression. I have to look into this device for pain. I have already had ACDF C5-6 C6-7, have additional issues above the fusion and issues in my lumber region besides RSD in both hands and feet. I may have missed this response but where did you get the device and can it be put through any durable medical or regular medical insurance. Looking forward to the research.
My secondary insurance covered the device but many insurances do not. Please read through this thread for specifics on where to purchase the device. You might want to select a website that does not require a script to save yourself a visit to a doctor who may or may not agree to write one.

Best to you and hope you find relief.
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Old 03-10-2012, 03:14 PM #175
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Exclamation Almost ready for take-off

Hi Ballerina, thanks for the advice but forgive my technical naivety. Could you help me understand 'both sides'..the cathodal/anodal layout, located where on head for your chronic pain protocol.

Whatever ideas you've got sound good to me and will probably be superior to any pubmed literature.



+ thanks Orlin1, looks like the good people on this forum are the real experts!
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Old 03-10-2012, 03:41 PM #176
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Originally Posted by nick allen View Post
Hi Ballerina, thanks for the advice but forgive my technical naivety. Could you help me understand 'both sides'..the cathodal/anodal layout, located where on head for your chronic pain protocol.

Whatever ideas you've got sound good to me and will probably be superior to any pubmed literature.



+ thanks Orlin1, looks like the good people on this forum are the real experts!
Hi Nick,

I found this in my files.

http://www.uclouvain.be/cps/ucl/doc/...in_JNeurol.pdf

With neuropathic pain the problem with brain plasticity effects both sides of the brain even though the pain may be present on one side only. To treat both sides just use the same electrode placement but change the electrodes to the opposite side.

Hope this helps!
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Old 03-10-2012, 04:22 PM #177
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Just wanted to update on how things have been going since I started tDCS treatments. I have seen slight improvements in the pain in my ankle since I started treatments 2 weeks ago. The relief goes down to about a 4/10 on the pain scale but several hours after treatment sneaks back up that 9/10 level...quicker if I am being more active which I admit that I am trying to be more and more. I'm encouraged but I will be trying a different placement for the electrodes starting tomorrow to see if I can get a more longer lasting effect.

I know it probably sounds crazy but there's a part of me that almost prefers the constant pain at a higher level to the short term relief followed by it worsening. I guess because I can cope and function with the high pain level but I find it harder to function when it goes up like that. Does that make sense? Probably not...but I am encouraged by the relief and hopeful that there will be a better placement that will work to provide a more constant level of relief.

I haven't noticed any other effects...my balance is about the same (still wobbly) and sleep is still not very good. I also haven't noticed any change to the pain in my other RSD areas...though it is most severe in my ankle where I seem to be getting some relief. But I'm not expecting instant miracles (even though the pain being below a 6 at ANY point is close enough to a miracle as I have seen in quite a while with my RSD) and really feel like this is going to be the right treatment for me.

Hope everyone else is doing well.
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Old 03-10-2012, 05:25 PM #178
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Thumbs up Great link

Thanks for the link Ballerina, it's the most informative I've read so far.
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Old 03-10-2012, 07:03 PM #179
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Originally Posted by catra121 View Post
Just wanted to update on how things have been going since I started tDCS treatments. I have seen slight improvements in the pain in my ankle since I started treatments 2 weeks ago. The relief goes down to about a 4/10 on the pain scale but several hours after treatment sneaks back up that 9/10 level...quicker if I am being more active which I admit that I am trying to be more and more. I'm encouraged but I will be trying a different placement for the electrodes starting tomorrow to see if I can get a more longer lasting effect.

I know it probably sounds crazy but there's a part of me that almost prefers the constant pain at a higher level to the short term relief followed by it worsening. I guess because I can cope and function with the high pain level but I find it harder to function when it goes up like that. Does that make sense? Probably not...but I am encouraged by the relief and hopeful that there will be a better placement that will work to provide a more constant level of relief.

I haven't noticed any other effects...my balance is about the same (still wobbly) and sleep is still not very good. I also haven't noticed any change to the pain in my other RSD areas...though it is most severe in my ankle where I seem to be getting some relief. But I'm not expecting instant miracles (even though the pain being below a 6 at ANY point is close enough to a miracle as I have seen in quite a while with my RSD) and really feel like this is going to be the right treatment for me.

Hope everyone else is doing well.
Having been there and done that I can certainly understand the effects of short term pain relief. Your progress is still remarkable!!! Very frustrating that it is short lived.

To prolong my pain relief I did mirror therapy, sometimes as much as every hour, and was in and out of epsom salts baths, as well many other strategies. If that does not work for you how about kicking up all of your pain relief strategies for the time you are treating with tDCS?

I am shooting in the dark here but what I concentrated on was pain reduction 24/7 when I began treating back in November. I would switch out strategies all day long, day after day. After a while my body developed a "new normal" base pain level.

I wonder would happen if you targeted some of your other CRPS areas with the tDCS, rather than you ankle?

Regarding sleep, some people sleep better if they limit their second treatment to prior to 4:00 pm, (that is assuming you are doing two treatments per day)

What protocol did you use and what protocol will you try next?

What are all of the other areas of CRPS pain?

I am so happy that you are not giving up. The first protocol I tried worked but the second one worked better. The good thing is that it sounds like you are a responder!!!!! That is huge!!!!!!

P.S. A helpful strategy might be to keep a notebook handy and jot down symptoms at least twice a day. When I did this I turned the page each day so I could not see what I had written, and did not review my comments for twelve days.

Hope something I have offered helps!!!!!!!!!
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Old 03-10-2012, 08:18 PM #180
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I will try to do as you suggest and be really aggressive with the other therapies, etc, that I do to help bring the pain levels down. I've been just doing them as I did before but maybe if I focus on doing them more then that will make the effects last longer. I've also been trying to spend some time getting out of the house to continue to work on building up my endurance for "when" I am able to return to work (whenever that may be).

I'm not really clear on what the best option would be for trying to target a specific area other than you want the anode on the opposite side. I've tried to read through some of the articles but honestly my reading comprehension has gotten pretty rough since the RSD got so bad last year. I used to love to read and I just can't seem to focus enough. I read a few lines...then have to reread them because my mind wanders or I can't remember what I just read. It's very frustrating and reading up on tDCS beyond what has been posted here has been rough going and frustrating to say the least. At any rate...I would be willing and happy to try any other placements if anyone can give me more specific direction on how to target a specific area.

I have RSD in my left ankle and also everywhere between my waist and neck (inlcuding both arms and hands). Thankfully I started doing therapy and desensitization in those areas before they had a chance to get as bad/far along as my ankle. I also didn't make the mistakes that I did with the ankle (or that my doctors made with my ankle) like immobilizing and using ice. So even though I still have the constant burning pain, allydonia, and swelling in my upper body...the bone crushing make you want to cry flares and freezing only happen every few days as compared to the constantness of the pain in my ankle. Lord...how warped is that to think the awful pain in my upper body isn't "that bad" when it would probably make most people want to curl up and die. I'm affected on both sides equally up there with my back, neck, and hands being the worst generally outside of those awful flares that can attack anything in that region (or several at once). I try to stay positive and not think too hard about these things...but when you write it out like that you really realize what a warped sense of "normal" you get when you live with this. And I know I've lived with it not nearly as long as many.

I do keep a notebook though of what times I do treatment and the effects, etc. I've been doing the treatments at 10am and 5pm every day...mostly because of my boyfriend's work schedule so I can do them when he is not home and I can be completely relaxed and not have any distractions. I could try moving the second one up. Haven't noticed my sleep being any worse than before though...just not better.

I won't give up and will keep trying. Some relief is better than none afterall but I hope that I can find something that works a little bit better for me. So far this has been one of the few things that actually helps with the PAIN though. Physical therapy has been great for the function and all...but other than the TENS I haven't had anything that could make a significant impact on the actual pain in a very long time...especially since I went off of all my meds for the pain last year. I don't really want to have to go back on them because I am worried about the long term effects (and that seratonin syndrome was nasty business...don't want to deal with anything like THAT again). So I really think tDCS will be my best option once I find a protocol that works best for me.
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