SCS & Pain Pumps For spinal cord stimulator (SCS) and pain pump discussions.


advertisement
Reply
 
Thread Tools Display Modes
Old 08-10-2013, 04:38 AM #11
schwej01 schwej01 is offline
New Member
 
Join Date: Aug 2013
Posts: 2
10 yr Member
schwej01 schwej01 is offline
New Member
 
Join Date: Aug 2013
Posts: 2
10 yr Member
Default Hi All

I am very glad to have found this thread. I had my first p-stim treatment started at 3pm yesterday. It is now 5am (I should be sleeping.) On the drive home from the center, I immediately began getting a headache. I came home and took a nap, although I have no idea how I slept then with this thing poking me. I am currently in my third "on cycle" and it woke me up from a dead sleep. I was not able to fall asleep until after 12am, when my last "on cycle" ended. Through the on cycles, I have had a significant increase in my anxiety and I begin sweating profusely. The pulsing on my ear is painful and annoying to the point of desperation. There's really no point in trying to sleep anymore as I would have to get up at 6am anyway (go figure- just as it will turn off.)
I have read many many health related sites, reading threads of people dealing with medical and pain issues such as mine, however, I was never moved to actually join the site and respond in a thread. The reason I joined this one is to try to add to the above mentioned lack of helpful info regarding the p-stim treatment. I was also frustrated by the lack of unbiased information since I am alarmed at this inability to sleep plus the anxiety is almost unbearable. I finally found a site *admin edit* which seem to suggest that I may be overstimulated. I am not yet in enough despair to throw in the towel on this procedure. I may, however, cut this one bothersome lead off if it continues to agitate me so. I am- as I'm sure are the rest of you- willing to try just about anything to be out of my chronic back pain- including a second back surgery, which at 33, I am trying to put off as long as possible. I do also have the same concern as the person who started this thread. I am afraid of this working too well that I will injure my spine further with no pain sensors. I will continue to post here if I have anything new to share. Thank You

Last edited by Chemar; 08-10-2013 at 07:17 AM. Reason: sorry but newly joined members are not allowed any type of links/website redirects
schwej01 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eva5667faliure (04-23-2014)

advertisement
Old 08-16-2013, 08:24 AM #12
Azzabar2003 Azzabar2003 is offline
Junior Member
 
Join Date: Jul 2013
Posts: 12
10 yr Member
Azzabar2003 Azzabar2003 is offline
Junior Member
 
Join Date: Jul 2013
Posts: 12
10 yr Member
Default

Thanks for posting Schwej01.
I understand how you feel, the P stim is something thats has to be endured.
By now yours should be removed, where you able to make it through the entire cycle? Where you able to sleep better the next night? Did you notice a decrease in pain levels?
I hope you will post a follow up.

I have started my 2nd cycle with P Stim and am finding it to be as EARitating as the first. That is to say that I am not "Getting used to it." as some claim they do. If I can get absorbed in a project, I don't seem to notice the stinging as much.

No change in pain levels, just increased anxiety after Day 1 of cycle 2.

The stories at the Pain Clinic are changing. I did not hear that "EVERYONE LOVED THE P STIM". "BEST THING EVER". It was more realistic this time. Some said that it was helping. ALL said they had trouble sleeping.

Day 2 zapping is about to start.

Good luck to everyone in their Pain management,
Azzabar2003
Azzabar2003 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eva5667faliure (04-23-2014)
Old 08-16-2013, 08:40 AM #13
Azzabar2003 Azzabar2003 is offline
Junior Member
 
Join Date: Jul 2013
Posts: 12
10 yr Member
Azzabar2003 Azzabar2003 is offline
Junior Member
 
Join Date: Jul 2013
Posts: 12
10 yr Member
Default

I ment to ask, of those posting, where are your electrodes connected?
Are they at the Top of your ear or at the bottom, on the lobe?
Mine are on top. Mostly cartilage.

I am wondering if this makes a difference in whether people are tolerating the Stimulation or not.
I know that it is installed based on pain location but can't help wondering if those that tolerate it better have it connected to their Lobes.
Azzabar2003 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eva5667faliure (04-23-2014)
Old 08-17-2013, 03:04 PM #14
Tye1on Tye1on is offline
Newly Joined
 
Join Date: Aug 2013
Posts: 2
10 yr Member
Tye1on Tye1on is offline
Newly Joined
 
Join Date: Aug 2013
Posts: 2
10 yr Member
Default P stim trial

I am currently on day 2 with the device. I have hopes it will work but so far it has not been very pleasant. The first night I developed a horrible headache, it felt like I had been hit in the head near the device and it was giving me an intermittent earache. The headache seems to vary in intensity but definitely increases with talking, jaw movement and even walking at times causes increase in throbbing. Night 2 brought even worse headaches and I seriously considered waking up my dr. At 3am. I will say once I got to sleep the quality seems to be improved. I also am having an incessant itching sensation behind the ear. While I don't think this is the miracle I hoped for I am trying my best to ride it out and give it the full trial period but at this point I really don't know if I would have the procedure repeated. It's kind of like well my back doesn't hurt so bad but that's only because of the pain of the nasty headache I have. Also I saw someone mention agitation and being short tempered and I have definitely noticed an big decrease in my patience level these past few days. Has anyone out there had a better time with subsequent implant?
Tye1on is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eva5667faliure (04-23-2014)
Old 08-19-2013, 04:35 PM #15
Tye1on Tye1on is offline
Newly Joined
 
Join Date: Aug 2013
Posts: 2
10 yr Member
Tye1on Tye1on is offline
Newly Joined
 
Join Date: Aug 2013
Posts: 2
10 yr Member
Default Pstim and dentist

Today is day 4 of p stim and I'm due to have it removed tomorrow. Today I had a dental appointment for some fillings and it could not have gone worse, the novacaine did not have its normal effect and the nitrous oxide had absolutely no effect on me. We had to stop mid procedure and reschedule. I have never had any problems before with either novacaine or nitrous oxide so my dentist and I can only wonder if this pstim device is having some sort of unexpected side effect that is affecting me. If you have a pstim I would recommend telling your dentist about it well before hand or just waiting until you are in between device cycles. I don't like going to the dentist but i have always been able to get through it, today was tantamount to torture and I hope no one else has this horrible experience. Also as mentioned in my previous post my patience level is near zero and I'm snipping at everyone which is not normal for me.
Tye1on is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eva5667faliure (06-23-2014)
Old 08-23-2013, 03:38 PM #16
gfknitter gfknitter is offline
Newly Joined
 
Join Date: Aug 2013
Posts: 2
10 yr Member
gfknitter gfknitter is offline
Newly Joined
 
Join Date: Aug 2013
Posts: 2
10 yr Member
Default Considering P-stim

I am so thankful for this thread, that is it recent and that it involves REAL people. I am seriously considering this for my fibromyalgia pain. I'm to the point of needing narcotics so we are trying to increase other meds first...Lyrica and Tramadol specifically. But after reading here, I can go into it with my eyes open and better questions.

I seriously plan to video document this if I do it. It seems like it will be helpful to others coming along behind me.

I'm still waiting to hear if my insurance will cover it/how expensive it is. That will obviously make a difference.

AGain, thanks for your transparency.
gfknitter is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eva5667faliure (06-23-2014)
Old 08-27-2013, 09:46 AM #17
Azzabar2003 Azzabar2003 is offline
Junior Member
 
Join Date: Jul 2013
Posts: 12
10 yr Member
Azzabar2003 Azzabar2003 is offline
Junior Member
 
Join Date: Jul 2013
Posts: 12
10 yr Member
Default

Tuesday August 27, 2013. Started day two of cycle three of P Stim. The zapping is just as anoying as the first two cycles. I guess I am not going to get used to it.

While at the Clinic on Monday I was talking with another Patient who had this installed. She told me that she barely notices the tingle in her ear. We got to thinking that maybe one of my electrodes is on a sensitive part of my ear. I decided to talk to the Dr., when I went in, about this. He moved one of the electrodes but it did not lessen the effect.
Monday was a bad day. The zapping seemed so intense. I had a headache and an upset stomach all day. Last night I barely got any sleep.

I did have two days, between cycles two and three, that were almost pain free. These were Tuesday and Wednesday after the device was removed on Monday. It was nice but ,as of now, I am not sure that two in ten is worth the torture.

If anyone has been following this, from the begining, you will notice that I have changed my schedule so that I am having the installation on Monday and removal on Thursday, so as to free up my weedends, instead of the other way around. This is so that I am able to enjoy my friends and partner without being so grumpy. Through the week I am alone with the dogs and they don't seem to mind the grumpy so much.

I posted, in the begining, that the zapping becomes more of a tingle after the second day. I think now that this has more to do with the batteries dying than getting used to the device.

Well, day two cycle three, I still have a headache and am drained from no sleep.
I don't believe that I will post again unless there is something different to report.

Have a nice day.
Azzabar2003 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eva5667faliure (06-23-2014)
Old 08-28-2013, 03:21 AM #18
schwej01 schwej01 is offline
New Member
 
Join Date: Aug 2013
Posts: 2
10 yr Member
schwej01 schwej01 is offline
New Member
 
Join Date: Aug 2013
Posts: 2
10 yr Member
Default

My second cycle of the p-stim treatment went better than the first. I did tolerate it better overall, but the first day was again very annoying and irritating. Both times the points were situated where one was on a part of the bottom of my earlobe then the other two were toward the top in the cartilage. I had a tough time getting the battery pack to stay on bc it was taped mostly in my hair. I noticed that if it does not have good contact, the zaps aren't as strong. And yes I agree that day 3 and 4 are more tolerable bc of the battery dying rather than becoming used to it. I have had no pain relief whatsoever from this treatment. My pain level stays at a constant 6-8 and has been there for months. I hardly get any relief from the pain medications I take, and my pm doctor will not consider an increase or change right now bc my liver enzyme levels are elevated. I have one more round with the pstim scheduled- and I'm still willing to give it a good shot at working. The research I was able to find, some info said it could take up to 6-10 treatments for it to become effective. I'm not sure I will go that far, but we'll see how it goes after the next one. Thanks everyone for continuing to share your experiences with such a new treatment program. Good night
schwej01 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eva5667faliure (06-23-2014)
Old 08-29-2013, 10:30 AM #19
MicheleN MicheleN is offline
Newly Joined
 
Join Date: Aug 2013
Posts: 4
10 yr Member
MicheleN MicheleN is offline
Newly Joined
 
Join Date: Aug 2013
Posts: 4
10 yr Member
Default

Quote:
Originally Posted by gfknitter View Post
I am so thankful for this thread, that is it recent and that it involves REAL people. I am seriously considering this for my fibromyalgia pain. I'm to the point of needing narcotics so we are trying to increase other meds first...Lyrica and Tramadol specifically. But after reading here, I can go into it with my eyes open and better questions.

I seriously plan to video document this if I do it. It seems like it will be helpful to others coming along behind me.

I'm still waiting to hear if my insurance will cover it/how expensive it is. That will obviously make a difference.

AGain, thanks for your transparency.
Transparency: I found this thread while trying to figure out how people were finding my blog using only the keywords "pstim" or "p-stim"... While I still haven't solved that mystery, I figured I'd contribute with my experience RE: p-stim and fibromyalgia.

I was the first person in my former pain management practice (at NYU Langone) to try the p-stim in June of last year; it still remains the most miserable experience of my life. The electrodes were placed on my earlobe, the top of my ear on the cartilage, and on the cartilage right outside of my ear canal. Installation was horrendously painful, even though I had preemptively taken Vicodin (this is coming from someone who didn't wince when she got her tongue pierced). The second it was turned on, I sobbed. The company representative was there teaching the doctors to do the placement/installation, and he kept assuring me that I would get used to it. I did not.

The only relief I got during those three days were when the p-stim cycled off. I cried when it cycled back on because I knew the painful, stinging, zap-zap-zapping wasn't going to stop for the next however many hours. (Sorry, can't recall the cycle length anymore.) I could only sleep when it cycled off, as it woke me every time it cycled back on. I was exhausted, in pain, and noticed absolutely no benefits. I almost cried out of sheer joy when I got to remove it!

My then-pain doctor decided I was, apparently, a terrible candidate and that those were not results representative of "most patients". Though a second go had been mentioned at my first appointment, my doctor opted not to prescribe the second round.

All of that being said, my current pain doctor is not convinced in the efficacy of p-stim for chronic pain and likened the representatives to snake oil salesmen. Gout? P-stim! Depression? P-stim! Lazy eye? P-stim! Arthritis, ADHD, bipolar disorder, runny nose? P-stim! (Making up those ailments, but you get my drift.)

Hope this post helps someone! And let me know if anyone wants a picture of the p-stim "in action". I have several close up pictures that I'm willing to share, assuming that's allowed.
MicheleN is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Azzabar2003 (08-30-2013), eva5667faliure (06-23-2014)
Old 09-11-2013, 03:47 PM #20
Azzabar2003 Azzabar2003 is offline
Junior Member
 
Join Date: Jul 2013
Posts: 12
10 yr Member
Azzabar2003 Azzabar2003 is offline
Junior Member
 
Join Date: Jul 2013
Posts: 12
10 yr Member
Default

September 11, 2013. Fourth and final. In an earlier post, I wrote that I would be going through six cycles of P Stim.
After talking with my Dr ,on Monday, we decided that this would be my last cycle. I have not had enough of a change to justify the amount stress this device has caused. Although the frequency of stabbing pain in my back has lessened, I can't say whether it is from the P Stim or because I have not done much of anything strenuous in the past few weeks.
The pain in my legs is about the same. I know that I wrote that I was having some good days but at this point I can not say that it is because of the P Stim or that it would have happened anyway.

Now He wants to implant a Medtronic Neurostimulation device. Did I say 'IMPLANT', not sure about that. (time to do some research; again)

Met an 83 year old retired Nurse who has been dealing with back pain for 50 years. She said none of the Gizmos have worked for Her, "Stick with the Meds".

The people I have met in the waiting room at the doctors office have all had the same issues as me. There was one Woman who claimed that she barely noticed the device but then I found that she is taking multiple drugs AND having injections. Hmmm.

For now, I guess, I will be going back to trying different meds. :-(

Good luck with your searches for relief,
Troy
Azzabar2003 is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Alpha-Stim 100 Device for Pain beachedsiren Reflex Sympathetic Dystrophy (RSD and CRPS) 0 11-26-2008 01:37 PM
not a TENS but some sort of electric stim device fern Thoracic Outlet Syndrome 6 12-18-2007 06:22 PM


All times are GMT -5. The time now is 09:37 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.