SleeplessinDc
 

I gotta respond to sleepless before I tune out for the nite. I want that headband you see on the EXTREMETECH website. It would solve all my hair, hands and dripping problems. You gotta go look everyone. Have a great nite. More tomorrow.:wink:

Joydee
 

Wishing you and your family lots of luck with the trip to Atlanta. I hope your husband and daughter have a safe trip. I never got to talk about the trip since we're back. I can tell you this it takes a strong person and a lot of planning to make a trip like this. Is your daughter ambulatory? Getting around atlanta airport is the most trying of the whole trip. I have some insight and be forwarned of the expanse of the place. I'd swear it is JFK and Laguardia rolled into one and spread out over 10 acres. Anyway, this is not the place to talk about it. If you'd like info send me private note and I'll be happy to help. To bad you aren't traveling with them. I know since you do all the talking on here you would get great insight into Dr Fugedy if you were there. You'd get to see what it is we talk about him. Since you're not going rest assured they are in good hands. He'll do whatever he can to make her life better if that's in the cards. Wishing you all the best.:)

Hi,

Before I begin I hope you received my private message, I am still getting the
hang of it and always wonder if they went through. If you don't mind
I will share some of what I said in the private message with the rest of the
group interested in TDCS. We had reset the date of the consult with Doc
Fugedy but I called today to set the hour and Doc and I spoke for a bit.
I shared with him some were not having a response as hoped and he says
in essense it is very important to just keep repeating the procedure. My
understanding of what he was saying is that some in other countries are
doing it as long as six weeks. He also mentioned another protocal but
I am uncertain of the details and for this reason do not want to say much
about it, but did understand it involved placing one of the electrodes
directly on the spine. Cathodal I think he said but do more research etc
before any expermination takes place since I know very little.

When it comes to continued treatments in the face of seemingly not getting
a response I think we have but to look to our friend ballernia. Doc Fugedy
pointed out her term use and the improvement she has had from that long
term use.

I think he has a strong point. Playing devils advocate lets just say when
ballerina began treatments she experiences remarkable process but say
she decided that improvement was good enough so cut down on her
methods. The question then arises had she ceased those repeated
treatments day after day would she have continued to experience
improvement. What I am saying is although there might appear to be
no response we can not always tell what changes are taking place and
how much help one is giving the brain a chance to change direction.

Also just in case you did not get my private message Doc suggested wrapping the ace bandage around the head first, not to tight then
insert the electrodes. Doing it that way provides a better cushion and
more support and lessens the risk of the electrode from slipping from
its correct postion.

:hug:Joydee

Tdcs: Keep at it
 

If I had given up after the first few weeks, even after a month I would still be in the wheelchair and have a useless hand and arm.

My CRPS led me to a Boston Scientific Spinal Cord Stimulator, which required "revisions" which caused spreads and left me in the wheelchair. One of the spreads went to my wrist and hand. The pain was so intense that the doctor had the nerve to suggest that I get a second stimulator to treat the pain caused by the first.

tDCS gave me a second chance that most people with CRPS who experience the typical failure rate of spinal cord stimulators don't get.

I followed Ballerina's advice and keep a daily log-nothing special, just things like sleep, pain level, activity level, headaches, and what I call sweat flashes.
I also did not look at the log but one time a week as Ballerina suggested. Improvement was slow at first, in fact I was not even sure if it was just wishful thinking. My emotions were all over the place. I was so distraught that I had suggested that others have Spinal Cord Stimulators (prior to mine failing after less than two years and learning that what I experienced with the SCS was quite common)

What I finally did was to just make the treatments part of my daily routine, like brushing my teeth. I tried not to attach any more emotions to the treatments than I would to brushing my teeth. I tried not to look back and forgave myself for sending others down the same path with the SCS.

I still do the daily log. I want to be able to remember the date that I give up the cane for good.

By the way. That useless hand compliments the failed spinal cord stimulator? I am pitching ball to all the neighborhood kids, using a glove and no cane.

Where would I be if I gave up. Still in the wheelchair.

I never thought the atrophy would resolve-it was so bad. (use it or loose it) But the muscles woke up as soon as I started using them again.

I take breaks from treatments now, although I do not know what the booster schedule should be. I don't wait for symptoms to return. In fact I truly believe that many of the symptoms are gone for good. I treat three times a week twice a day for twenty minutes for a couple of weeks. Then I return to a full week then back to three times a week. I am still making progress even on this booster schedule.

Sure beats recharging a stimulator and always having to have the remote handy. Also beats doing a treatment (stimulator) that does not stop the progression of CRPS, can cause dangerous spreads, revisions, battery replacement surgeries and is invasive.

Please keep at it. You can always change protocols, which are emerging all the time. You are also fortunate to have a doc who obviously is at the top of his game!

Hope this helps!

Sould I be going this twice a day?
 

Hi,
So still not getting anywhere with the tx, Doc fugedy said to only do it once a day but it seems like the people having success are doing it twice a day..And if I do do it twice a day how many hours in between ...I have to run it for 40 min at 1.0......would 7 hrs be ok?

Thanks for any info

Debbie

That should be fine Debbie. I usually do mine at 8 and 4...but sometimes at 10 and 5. I try to do my treatments around my boyfriend's schedule so that he's not distracting me while I'm doing a treatment. I like it nice and peaceful with nothing going on while I do the treatments. I would guess that you would likely still get results at once a day...but it might take longer to get them (total assumption on my part no based on anything I have read). But if you are able to do treatments twice a day then that might work better so it might be worth a shot. Unless there was some particular reason that Fugedy only wanted you to do once a day...that I wouldn't know. But you could always call him up and ask him, right?

Hi Deb,

The rust is falling from the brain gears here but didn't you mention that Dr. Fugedy started you out at 1.0 because of irritation???? I would give him a call and ask if it is ok to go up to 2.0 twice a day for twenty minutes each.
The current research is suggesting better results with treating for more weeks than was done in early clinical trials.

I have been treating fairly regularly since November and I am still seeing improvements. I might go for several weeks with no change and then it kicks in. How many weeks did he suggest you treat before you might see improvement?

Don' get discouraged. Even if the current electrode placement does not work there are other ones to try.

Put in that call the Fugedy-yes even on a Saturday.

Hi
 

When I try and go up in strength I stil get irritation so I need to leave it at 1.0. I am in so much pain when I sleep. My neck gets really stiff and hard to move. I can't take this!!1

Deb

Then definitely leave it at 1.0 but I would still try doing it twice a day. It may take a while to get results but they are worth the wait. I liked James's suggestion about just making it part of the daily routine and not EXPECTING any specific result. Much of the progress is slow and gradual...hardly noticeable at first. It was like that for me with the sleep and also with the differences in the number and length of the pain flares. If I hadn't been keeping track of that stuff in my journal I don't know that I would have noticed the changes right away. Well...I may have noticed the sleep changes but even that was gradual. You've had this for a while so it may take some time.

I've only had RSD for 2.5 years and my spread only started last year (only...god it feels like a lifetime). My hands and arms were the last affected by the spread and that's where my greatest relief has been. So don't be discouraged. Keep at it...wish it worked faster but we have to take this all as it comes.

All you guys totally amaze me. You all so complement each other, what one leaves out the other picks up on. We newbies are so greatful for the support and help in accomplishing this towering of obstacles. Joybee, thank you I got the message. I do exactly that, put on an ace bandage first then tuck in the "pods" (my word) then as the fluid runs down my face and neck I tie on a tighter one so that the whole pod is pressed against my head. All while my hair is getting pulled or tucked. I only hope and wonder do I have it in the right location. So I muttle thru and hope it's wet enough because I don't want to take it off and start all over. I think I'll shave my head lol. James thank you so much I needed that encouragement. It really got my blood boiling on myself. I did want to keep a journal but when I was not seeing any decrease in pain I assumed it meant nothing changed. Then I read about all the other aspects of this disease that you have all had improvement in and realized then, the other things I have besides pain may be affected first. It's very possible that could happen to Deb also. She too has so many things affected she may not notice any changes unless she kept a journal. GET TO IT DEB. I promise I'll keep a stiff upper lip and go on as if I was doing my hair for the nite. Great idea james, making it a regular routine. I love to hear how far you have all come. You make this procedure bearable. Thanks so much.