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Old 08-16-2011, 01:37 AM   #1
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TMS ( Transcranial Magnetic Stimulation )

Hi, please forgive my long post but I was wondering if anyone has experience with or knowledge on TMS ( Transcranial Magnetic Stimulation ) for treating chronic pain.

I'm only 26 years old and I suffer from chronic pain that started about 10 years ago when I was 16 and slowly got worse and worse over the years.

There is nothing wrong with my spine or my discs. My condition is complex and does not fall neatly into any one category or diagnosis. Rather, it shows signs of several different conditions: Sciatica, Piriformis Syndrome, Fibromyalgia, Ehlers-Danlos Syndrome, Myofascial Pain Syndrome, and more.

Based on an MR Neurography and clinical findings, one of my doctors determined that I had nerve irritation at several sites: sciatic notch, ischial tunnel, super gluteal, piriformis, impar ganglion, and possibly more. It was his opinion that the source of the irritation must first be addressed before any other treatment will be able to get rid of the pain. However, my doctors told me that there would be a chance that the surgery alone would not get rid of the pain because even if the painful stimuli have been removed from the Peripheral Nervous System ( PNS ), the years of chronic pain may have "rewired" the "circuitry" in my Central Nervous System ( CNS ) or more specifically, my brain, and therefore my brain may still be registering pain signals even though a part of my body is not sending the signals anymore. Sort of like Phantom Limb Pain. So if this were the case, then after the painful stimuli in the PNS is removed via surgery, I would need to "reset the circuit-breaker" in my brain by undergoing treatment with Transcranial Magnetic Stimulation ( TMS ).

In the USA, TMS is currently FDA approved for treating depression. However, according to my doctors and some research I've done, depression is often comorbid with chronic pain and patients often have TMS targeted to treat not only their depression but also their chronic pain. TMS seems to have a high success rate and has virtually no side effects. The downside? Cost. It's really expensive and few insurance companies cover it.

So I recently underwent surgery. The neurosurgeon performed the following on each side of my body: through an incision in the buttock, he located the irritated areas mentioned above, separated them from the offending tissue (such as scar tissue and/or connective tissue), coated everything in anti-scarring agents, and closed me back up.

Two months after the surgery I have had no decrease in the pain, but there is still more treatment to undergo so I'm still optimistic. Before I do the TMS, my doctor (who performed the surgery) wants me to try Enbrel ( etanercept ) for 4 weeks b/c he thinks I might have auto-immune neuritis which would respond to the Enbrel. If I don't respond to the Enbrel, then my next step is TMS.

So, again I apologize for my long post, but my question is if anyone has experience with or knowledge on TMS ( Transcranial Magnetic Stimulation ) for treating chronic pain.

Thanks

 
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Old 06-20-2012, 12:34 AM   #2
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Re: TMS ( Transcranial Magnetic Stimulation )

Quote:
Originally Posted by OverUnderThrew View Post
Hi, please forgive my long post but I was wondering if anyone has experience with or knowledge on TMS ( Transcranial Magnetic Stimulation ) for treating chronic pain.

I'm only 26 years old and I suffer from chronic pain that started about 10 years ago when I was 16 and slowly got worse and worse over the years.

There is nothing wrong with my spine or my discs. My condition is complex and does not fall neatly into any one category or diagnosis. Rather, it shows signs of several different conditions: Sciatica, Piriformis Syndrome, Fibromyalgia, Ehlers-Danlos Syndrome, Myofascial Pain Syndrome, and more.

Based on an MR Neurography and clinical findings, one of my doctors determined that I had nerve irritation at several sites: sciatic notch, ischial tunnel, super gluteal, piriformis, impar ganglion, and possibly more. It was his opinion that the source of the irritation must first be addressed before any other treatment will be able to get rid of the pain. However, my doctors told me that there would be a chance that the surgery alone would not get rid of the pain because even if the painful stimuli have been removed from the Peripheral Nervous System ( PNS ), the years of chronic pain may have "rewired" the "circuitry" in my Central Nervous System ( CNS ) or more specifically, my brain, and therefore my brain may still be registering pain signals even though a part of my body is not sending the signals anymore. Sort of like Phantom Limb Pain. So if this were the case, then after the painful stimuli in the PNS is removed via surgery, I would need to "reset the circuit-breaker" in my brain by undergoing treatment with Transcranial Magnetic Stimulation ( TMS ).

In the USA, TMS is currently FDA approved for treating depression. However, according to my doctors and some research I've done, depression is often comorbid with chronic pain and patients often have TMS targeted to treat not only their depression but also their chronic pain. TMS seems to have a high success rate and has virtually no side effects. The downside? Cost. It's really expensive and few insurance companies cover it.

So I recently underwent surgery. The neurosurgeon performed the following on each side of my body: through an incision in the buttock, he located the irritated areas mentioned above, separated them from the offending tissue (such as scar tissue and/or connective tissue), coated everything in anti-scarring agents, and closed me back up.

Two months after the surgery I have had no decrease in the pain, but there is still more treatment to undergo so I'm still optimistic. Before I do the TMS, my doctor (who performed the surgery) wants me to try Enbrel ( etanercept ) for 4 weeks b/c he thinks I might have auto-immune neuritis which would respond to the Enbrel. If I don't respond to the Enbrel, then my next step is TMS.

So, again I apologize for my long post, but my question is if anyone has experience with or knowledge on TMS ( Transcranial Magnetic Stimulation ) for treating chronic pain.

Thanks
are you maded the TMS ?

 
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Old 06-20-2012, 09:34 PM   #3
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Re: TMS ( Transcranial Magnetic Stimulation )

Just to update. First of all, in my original post, I listed several diagnoses and I meant to include Complex Regional Pain Syndrome.

I ended up not trying the Enbrel (long story), but instead went ahead with the TMS treatment. Although it has almost an 85% success rate with pain patients in my scenario, I was one of the unlucky 15% and the TMS did not decrease my pain at all. I'm not saying it's a bad treatment, it just happened to not work in my particular case. Also, since my last post, I'm not sure but I think the FDA has approved TMS for pain and it's only a matter of time before health insurance companies start covering it.

Anyway, I know my original post was a while ago but I thought I'd share that in case anyone comes across this.

 
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Old 11-28-2012, 05:20 AM   #4
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Lightbulb Re: TMS ( Transcranial Magnetic Stimulation ) OverUnderThrew

Hi OverUnderThrew

I found your post very interesting as I have pretty much exactly the same problem as you. I am looking for something to try and TMS has always sounded interesting, mainly because there is nothing else out there to try that seems to work. I think my story will be like yours, I won't go on with all the details but I would be really keen to chat to you here, it would be interesting for us both. I am pretty desperate for a fix like you are, I see this post is a bit over a year old so it will be interesting to see how you are now, I have been suffering from Chronic Pain/CRPS for about 4 years and it's totally brought my entire life to a grinding halt. I would really like to know more about the TMS and what you did and where, how much it cost etc.. I am sorry to hear it didn't help you, that's the last thing you needed, I can sympathize, it's very frustrating. Had trouble explaining it to friends? I bet!!! That's a tough thing to do as nobody really gets the drift. One interesting thing that I found was that Zopiclone sleeping tablets (maybe called something else where you are) take away my pain, I was taking them during the day but stopped that habit as it was a horrible thing to depend on but very interesting that when you take that particular sleeping pill (only that type works) my pain just calms down by about 80% for about 3-4 hours. So that proves the pain is coming from a problem in my nervous system/brain as you mentioned. I only take Oxy Contin and Oxy Norm now. Both are Oxy Codone. I have never had depression in my life but I now have horrible depression, I know that it would go away if my pain went away as it's directly related to the pain and all the things in my life that have been destroyed like my work, social life, sport... everything!


I hope you get this message and I hear back from you.

Cheers.

 
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Old 12-18-2012, 01:29 PM   #5
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Re: TMS ( Transcranial Magnetic Stimulation )

UPDATE 2012-12-18: Although I will probably always have to be dealing with my chronic pain condition, through a combination of treatments and lifestyle changes I have been able to decrease the pain to the point where I can get on with my life. This is as much success as I can expect.

There was no single thing that helped me, rather it was a combination of the following:

1. Surgery
2. Physical therapy
3. Psychotherapy
4. Medication
5. Possible residual effects of TMS
6. Lifestyle changes

1. Surgery: (see above post for detailed description). Additionally I had several guided injection procedures.

2. Physical therapy: it was important to stretch the muscles that were tight and strengthen the muscles that were weak.

3. Psychotherapy: chronic pain wreaks havoc on one's life and it was extremely important to see a therapist who specializes in dealing with chronic pain.

4. Medication: I've been on the med-merry-go-round and tried a ton of different meds. I was able to stop the opioids completely (after a doctor-supervised gradual taper-down) and I'm on a tiny dose of a benzodiazapine (clonazepam to be specific) but I'm planning on getting off that as well. The meds which seem to be safe and feasible in the long term as well as effective at reducing my nerve pain (which is a tricky kind of pain to address) are as follows:
-milnacipram, although a different SNRI might work for someone else
-bupropion, an NDRI
-mirtazapine, a NaSSA
-memantine, an NMDA receptor antagonist
-dextromethorphan (DXM), an NDMA receptor antagonist
All my meds are managed by an extremely well-qualified neurologist who is an expert in the area of chronic pain.

5. Possible residual effects of TMS: As I discussed in my above post, I underwent treatment with TMS (Transcranial Magnetic Stimulation). It was a painless and noninvasive procedure, however it was very costly. I didn't see any improvement and I thought that I got no benefit from it. However, a couple months later my pain and associated depression decreased, and my neurologist said that he has seen cases where residual effects from the TMS took months to manifest. However, since there are multiple factors in my overall treatment, it is impossible to say whether or not the TMS did in fact contribute to my decrease in pain.

6. Lifestyle changes: This was and continues to be very important. I had to completely reevaluate my life, my capabilities, and my limitations. For example, I have found that driving, even for five minutes, aggravates my nerve pain. So I have taken a job that is bicycling distance from where I live, and I only use my car when absolutely necessary. I also avoid any other constant body positions or activities that cause my nerve pain to flare up.



I hope this helps someone. If anyone out there is suffering from chronic pain and is having trouble treating it, feel free to ask me any questions about it. I have over 12 years of experience in dealing with it.

 
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Old 12-18-2012, 02:48 PM   #6
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Re: TMS ( Transcranial Magnetic Stimulation )

Thanks for your reply. I dont need surgery and get very sick on SNRI's or SSRI's so cant take them.

I did a 3 week pain management course, that helps as you say, lifestyle changes.

You have done really well by the sounds. Not what you want but better than extreme pain all day every day, I know all about that. I found when I finally accepted I was not well and my 20 yr flying carear may be over I started to calm down, as soon as I stopped flipping out when my pain ramped up and I also felt angry and annoyed about all the destruction it had caused in my life, I started to have reduced pain, no anxiety and little depression. It's helped heaps to not get emotionally wound up and stop dwelling on all the things I have lost.

I am still really interested in TMS, can give me a ball park figure of cost? Did you get insurance to pay? I plan to get a referral to a neurosurgeon and go from there, I don't even know if TMS is available in New Zealand?

Thanks for your reply, cheers.

 
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Old 12-18-2012, 07:23 PM   #7
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Re: TMS ( Transcranial Magnetic Stimulation )

Yes, I can relate to the psychological effects of chronic pain. It is literally a process of going through stages of grief. This may seem like a false comparison, but think about someone who is in a car accident one day and suddenly loses a leg. You're going to think about your situation and the things that you can no longer do and you're going to have thoughts of anger, depression, frustration, "why me?", etc. Once you accept your situation then you can get on with your life in a constructive manner. But believe me, I know how much it sucks. There's no getting around the awfulness of it.

Regarding meds, if you can't take SSRI's or SNRI's, I highly recommend trying NMDA receptor antagonists. My neurologist is very cutting edge and keeps up on the latest research and clinical findings. NMDA receptor antagonists are a class of drugs that, as their name suggests, have an antagonist affect on the NMDA receptors in the CNS (Central Nervous System), and they have been recently shown to treat chronic pain, especially nerve pain which is notoriously difficult to address. The two drugs that I take in that class (memantine and dextromethorphan aka DXM) have definitely helped significantly in reducing my pain and neither one gives me any side effects. I highly recommend looking into it as part of your overall strategy for combating the pain.

Regarding the TMS: it is a legitimate option with real research and clinical findings to back it's use in reducing pain and depression. It is FDA approved in the US (not that that automatically means it's good), and more and more insurance companies are starting to cover it. For me at the time the total cost (including the diagnostic fMRI's which are required first) was approximately $14,000 USD. I had to set up a payment plan because I couldn't afford that much up front. But as I said, other than the cost, there are no downsides. It has a high rate of success (about 85% last I checked), especially in patients who have not responded well to anything else.

Good luck and feel free to ask me anything else.

 
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Old 12-19-2012, 01:29 PM   #8
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Re: TMS ( Transcranial Magnetic Stimulation )

Thanks for all your help, I will get a referral to a Neurosurgeon from my doc and start the process of suggesting the drugs you mentioned and seeing where I can get TMS. I do have health insurance that I pay for myself and they have already paid for me and my wife to go from New Zealand to Australia twice to have nerve block injections in my back to see if it was worth doing neurotomy procedures into each area effected but at that stage I didn't know I had CPS. So when I finally worked out it was a pain issue not a back issue (when the penny dropped) I stopped seeking help for each individual ailment. Sure you will understand and prob did the same to a degree.

I appreciate your help and will keep in touch from time to time and let you know how I get on, it's a bit of a lonely world having CPS when everyone goes off to work and you are left at home wondering what the hell to do with your day. I make things mainly to stop getting bored.

Thanks again.


 
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Old 12-24-2012, 04:22 AM   #9
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Re: TMS ( Transcranial Magnetic Stimulation )

Is dxm also a NMDA receptor antagonist?
also, you said you take memantine and DXM - How much mg are you on? and are those pain killers? I mean, can you take memantine and DXM instead of taking any pain killers?

How were you able to stop taking narcotic pain killers? is it because those NMDA receptor antagonists you are taking?

Also, can you take those with oxycontin?

I am so sorry you have to deal with chronic pain. So sorry.
I hope one day they will find a cure for this rediculous thing called chronic pain.

Last edited by nochange; 12-24-2012 at 05:35 AM.

 
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Old 12-24-2012, 06:45 PM   #10
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Smile Re: TMS ( Transcranial Magnetic Stimulation )

Hi, I also wanted to ask the dosage for the DXM? My doctor asked me to ask you the dosage? Also he said I can have the memantine which I have a script for now but it is not subsidized by our govt. so is $250 a month just for memantine. He also said the DXM (in New Zealand) is only available in "cough mixture", if it's a decent dose he doesn't want to give me a bunch of cough meds really.

I inquired about TMS and it is not yet available in NZ for chronic pain or anything for that matter but I found the people at the university testing it, they have a big research program running now with TMS for Stroke and Chronic Pain and they will try get me into the research prog and get the TMS free! That would be great. Failing that I need to find what other countries like Australia that might be using TMS as I have med insurance and they would pay for me to go overseas to get treatment "IF" approved for Chronic Pain.

If you can let me know the DXM dose OverUnderThrew, that would be great, cheers mate.

 
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Old 12-24-2012, 06:47 PM   #11
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Re: TMS ( Transcranial Magnetic Stimulation )

nochange

TMS is meant to be amazing, 85% success rate. That may become "the" cure. Lets hope. I take it you have CPS? It's no fun that's for sure.

Last edited by HaywirePain; 12-24-2012 at 06:48 PM.

 
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Old 12-26-2012, 05:05 AM   #12
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Re: TMS ( Transcranial Magnetic Stimulation )

Hello Haywirepain, it's mainly chronic neck pain caused by a car accident.
How much mg of memantine should I ask my doctor to prescribe me?

Also, haywirepain, how do you know you have cps? did they check you for fibromyalgia?

 
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Old 12-26-2012, 03:27 PM   #13
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Re: TMS ( Transcranial Magnetic Stimulation )

Hi, 20mg a day but start at 5mg week 1, 10mg week 2, 15mg week 3 and finally 20 mg a day week 4.

I know I have chronic pain because I have pain all over, all my old injuries produce rediculous amounts of pain, really my problem is that my pain is normal, my body is normal but my brain is confused and all pain (incl normal pain, aches and pains) is amplified, it varies depending on how active i've been etc... but the real core of the problem is "central sensitization", poor tolerance to pain. Only oxy codone really seems to help, not ideal.

Do you have any other bad pain or is it just your neck? You can have what I have but only your worst problem is an issue, ie your neck. Do you have any other old injuries that are behaving or do they produce pain that seems unusual?

 
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Old 01-19-2013, 12:13 PM   #14
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Re: TMS ( Transcranial Magnetic Stimulation )

Hi again, I tried the tDCS Transcranial Direct Current Stimulation, after 5 days 20 mins a day I feel in more pain? Hopefully it will kick in later?? I also had a play with the TMS, I got it all free at the University where they are researching the device.

Anyway, can (OverUnderThrough) you please tell me about the following:

-memantine, an NMDA receptor antagonist (GOT THIS YET TO TRY)

-dextromethorphan (DXM), an NDMA receptor antagonist (MY DOC NEEDS TO KNOW THE DOSE? HE SAYS HE CAN ONLY FIND IT IN COUGH MEDICINE HERE IN NEW ZEALAND)?

Hope you can help with the dose, cheers.

 
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Old 02-19-2013, 09:36 PM   #15
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Re: TMS ( Transcranial Magnetic Stimulation )

Hi OverUnderThrew. How are you? I just learned alot from this thread that you started. I appreciate the way you seem to easily break things down so that they're easily understood. I was wondering if you would please go to the thread/post I put up a few hours ago, and let me know if you understand, and could maybe share with me, what my MRI results mean. The thread's called "MRI results. I have no clue what it means" Anything at all that you could help me with, I would really be grateful for! It's pretty scary to read "Scoliosis" and be told you've always had it. Also, "Degenerative Disc Disease" and "bulged discs" too. As far as I remember, that's about it, but, I'm not sure. Lol. I did type out the "findings" and "discussion" Thank you so much for anything you're able to do, I really appreciate it!

 
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