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 01-04-2013, 12:43 PM #471
Hampster63 Hampster63 is offline
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Thumbs up daylil,

Your neuro may be able to get info from Dr Fugedy of Atlanta pain doctors.com Brain Stim Clinic in Atlanta Ga. He's the go to doc if you want to buy unit and treat at home. He charges a fee because he's the oncall doc to follow your progress and make changes when something doesn't work. He may be willing to talk to your doc to avoid you having to go to him. My friend and I went to Atlanta and went thru the process of treatment with tDCS and it did nothing for us. That's not to say it won't work for you. There are people on here that it does help so do all you can to get whatever works for you. I have a unit for sale if anyone wants it. You'll need new pads but that's the easy part. Good luck in your search and by all means have your doc call Dr Fugedy. You could also write to him at (Dr.Fugedy@Gmail.com) see if he'll write back.
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Old 02-08-2013, 02:16 AM #472
*pamela* *pamela* is offline
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To those who have been active in this thread, I'm just arriving. Lots of info to digest.

I think I remember reading somewhere that you could make your own tCDS unit. Is this true? I feel like someone posted instructions on how to do this on a thread I read in the past. I think it was this one, but of course I have the RSD brain fog so I can't remember. Maybe it was a whole different therapy and you can't build your own?!

Anyway, if anyone can point me in the direction of where in the thead there are instructions (or links to them), that'd be immensely helpful. I started reading through all the posts, but with 48 pages of them... well, thought I might ask for a bit of direction from y'all

I'm curious to try tCDS because I've had amazing luck with Frequency Specific Microcurrent. After my first session I was able to be on my feet for 6 hours at a party without pain -- unheard of, because I can't even stand long enough to brush my teeth without pain usually. It gives me amazing relief, but sessions are $165 and not covered by my insurance (there are providers who charge less, but not in my area).
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Old 02-08-2013, 02:27 AM #473
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I'm also curious: can someone explain to me how tCDS has helped them? Is it mainly for helping cognitive improvement, or does it also reduce your pain level/ability to function in day-to-day life?

(sorry to be that annoying person who is overwhelmed by 48 pages and so I'm asking questions that have probably already been answered)
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Old 02-08-2013, 07:36 PM #474
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I'm very sorry, and personally disappointed, that it has not helped you. I'd like to suggest that you not give up entirely, but keep your unit and try later... that seems to have be beneficial for some folks. If you really want to sell your unit, I might be interested in buying it. Can you tell me about it?
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Old 02-08-2013, 09:26 PM #475
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Sorry, my messsage was for Hampster63. Please keep trying! (And keep me in mind if you really decide to sell your device.)
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Old 02-08-2013, 09:34 PM #476
Joydee Joydee is offline
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Quote:
Originally Posted by *pamela* View Post
To those who have been active in this thread, I'm just arriving. Lots of info to digest.

I think I remember reading somewhere that you could make your own tCDS unit. Is this true? I feel like someone posted instructions on how to do this on a thread I read in the past. I think it was this one, but of course I have the RSD brain fog so I can't remember. Maybe it was a whole different therapy and you can't build your own?!

Anyway, if anyone can point me in the direction of where in the thead there are instructions (or links to them), that'd be immensely helpful. I started reading through all the posts, but with 48 pages of them... well, thought I might ask for a bit of direction from y'all

I'm curious to try tCDS because I've had amazing luck with Frequency Specific Microcurrent. After my first session I was able to be on my feet for 6 hours at a party without pain -- unheard of, because I can't even stand long enough to brush my teeth without pain usually. It gives me amazing relief, but sessions are $165 and not covered by my insurance (there are providers who charge less, but not in my area).
Hi,

If memory serves me I recall there was a post from an undividual who had attempted to build his own TDCS unit. I do not know the background of
this individual, his training, how the unit worked for him but one thing can be
said. One would have to have an extensive techinical background. Please
understand the units on the market have been created by individuals with
this kind of background working with the medical profession. The units on
the market have built in safety checks. Keep in mind with TDCS you are
dealing with electricity and the brain and without that knowledge it can
be dangerous to attempt to create your own TDCS unit. Just some
thoughts. I will also respond to your additional post in another posting. Blessings
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Old 02-09-2013, 12:15 AM #477
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Quote:
Originally Posted by *pamela* View Post
I'm also curious: can someone explain to me how tCDS has helped them? Is it mainly for helping cognitive improvement, or does it also reduce your pain level/ability to function in day-to-day life?

(sorry to be that annoying person who is overwhelmed by 48 pages and so I'm asking questions that have probably already been answered)
Hi,

The short answer is no, while TDCS does help to restore executive functioning,
that particlar electrode placement is not excusive to that function, applications to
the prefontal cortex F3 ( left) F4 Right is also used to treat emotional pain as
well as physical pain. There are several protocols used in TDCS. It is rare for any
one individual to respond to all protocals. In fact you may not be a responder at
all. You may only respond to one or two protocols as well.

TDCS is not a one size fits all, each TDCS's users body is different and because
they are different there are varying experiences depending upon what protocol
a response is had. Likewise the time line or length of time involved before one
does experience a benefit varies with each individual. It is time consuming but
only in reading through the entire thread can you gain insights. Just read a little
at a time. Hope this helps. Blessings
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Old 02-09-2013, 08:29 AM #478
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Quote:
Originally Posted by *pamela* View Post
I'm also curious: can someone explain to me how tCDS has helped them? Is it mainly for helping cognitive improvement, or does it also reduce your pain level/ability to function in day-to-day life?

(sorry to be that annoying person who is overwhelmed by 48 pages and so I'm asking questions that have probably already been answered)
For me...tDCS has helped with some things and not with others. Things that have improved for me with use of tDCS:

1. Pain flares less often.
2. Pain flares last a shorter amount of time (one day vs. days or weeks).
3. Sleep went from only getting 3 hours a night with meds to now 6-8 without meds (HUGE).

I did not rely ONLY on tDCS as a treatment but since beginning it's use my balance has also improved a little (which I think is mostly due to the physical therapy and increased activity since returning to work but tDCS may have played a part as well).

Things that have not improved with use of tDCS:

1. Pain levels (flares are less often but the daily pain is the same and rises at the same triggers).
2. Hypersensitivity to touch and cold.
3. Ability to concentrate (never tried a protocol for this specifically though...may try in future).

Overall I would say that tDCS has been HUGE for me in taking back a more normal life. The increased amount of sleep and fewer flare and flares that last only a day are big deals to me for increasing my ability to function. That, however, has been my primary focus with ALL of my treatment plans for tDCS in the past 2 years...to target symptoms and the things that were preventing me from FUNCTIONING as a normal person. I still need a walker and have limitations...but I am back to work and living a "normal" life again. Prior to starting tDCS I was just beginning to get back on my feet after being in a wheelchair for almost a year.

Take care and good luck.
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Old 03-01-2013, 06:34 PM #479
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Smile She was stumped?

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Originally Posted by ballerina View Post
My physical therapist is finally warming up to my tDCS home treatments. She recently commented that she guessed "it would be OK for me to use the device because I "have a doctorate, after all, it's not like you are a bricklayer." In total astonishment I asked her if she felt comfortable providing a bricklayer with a TENS unit to use at home. She replied, "Of course I would." When I asked her to define for me how the technology of tDCS is substantially different from that of a TENS unit she was stumped. Finally she stated that TENS units are not experimental and tDCS is. I then suggested that perhaps she should let Blue Cross/Blue shield know that because even though TENS units have been around for 40 years, I was required to purchase my TENS unit out of pocket because it was considered to be experimental. I reminded her of her skepticism when I suggested that graded motor imagery and mirror therapy might help me. Now she uses both of these treatment modalities with other patients.

Maybe she should be paying me.

Please do not be intimidated by this treatment. It is not rocket science. I am still seeing improvements each day. Probably the best thing about my treatment is the decrease in the numerous sensations that can make us nuts, i.e. dizziness, tingling, freezing cold one minute and sweating the next, joint aches and pains, headaches, weird vision issues, a general overwhelming feeling of overall feelings of being unwell, extreme reaction to minor aches and pains like bumps, paper cuts, burning, stiffness, reactions to loud noises and vibrations, and sensitivity to touch and temperature changes. This treatment will not cure me but it is making it easier to manage the degree to which I suffer.

I hope my journey can help others.

Wishing everyone a Happy Thanksgiving!
She should be paying you! The difference between TENs and direct current stim. is direct current. TENs is intermittent current. You could burn your skin with it and it is the continuous current for twenty minutes that stimulates the frontal lobe. My little machine ramps up then times your session. It turns off automatically after twenty minutes and aborts immediately if you are getting too much current (because of too much pressure on the electrode). I am still getting use to the device. TMS is $7,000; insurance does not pay for it, and you may have to repeat it. Only offered in a clinic. Plus, it is unpleasant (sounds like an MRI) and each session lasts an hour.
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Old 06-15-2013, 11:15 PM #480
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Default Unit from foc.us - any opinions?

I discovered this thread while looking for help with my chronic depression - I do not have RSD or CRPS.

However I am very interested in TDCS as a treatment for my depression.

I subscribed to the mailing list of a company called GoFlow who were working on a direct-to-consumer TDCS device, but in the last week or so received an email from them saying they were winding up - and referring interested parties to another company,*edit*

It's marketed as a video game performance enhancing device, but I am hoping that by using the optional extension kit, I can use it to direct current to the relevant parts of my brain.

It has received some criticism, but I'm still optimistic. Has anyone here come across it? I'd be interested to hear others' opinions, but in any case, if TDCS does help RSD then maybe this might be of interest to others to investigate ...

looks like it won't even START shipping until next month, so don't know when I'll get my unit. I intend to do some regular cognitive tests to make sure that at the least I am not harming any cognitive abilities I can readily test, although as I mentioned, I'm primarily interested in this device for its possible mood enhancing properties.

Last edited by Jomar; 06-16-2013 at 01:08 AM. Reason: No linking or partial links for new members
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