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Heather Mills - Amputee Forum
Ally

A curious observation.....

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Hey all. I suffered for the longest time from the most wicked phantoms. When I had my accident, medical staff were more concerned with my internal injuries and blood loss, than the damage to my right leg. It was the middle of the night, and a GP cut off my leg.

I believe that because of this, I suffered with phantoms much more than I should have. He amputated without a thought to how an artificial limb might fit, or any nerve damage.

Anyway......for years I was totally crippled with pain, and after being given all the conventional pain meds that doctors chuck at amputees, was told to live with it.

Let's bear in mind that when the phantoms hit me, I was down typically 6 out of 7 days, with "zappers" hitting me every 20 seconds non-stop through this time.

So I did some research (actually hours and hours and months and months of research) and I hit on something. A med that nobody had offered me. I went to my doctor and she looked at me with one eye........and so I hauled out MOUNDS of paperwork showing why she should not give me anything less strong, and why she SHOULD let me try this new med. Thank the good Lord she trusted me, and we decided to give these meds a trial.

Long story short........after 2 years of using these meds, only when desperately required, my phantom pains became less and less, and with every bout of phantom attacks, they also became less severe.

As of today, I have had 3 phantom attacks over the last 2 to 3 years and was able to control them. This year, I have had NONE.

Food for thought......have I changed the pain "mapping"? By effectively controlling phantom attacks, has my clever brain decided that it no longer has to send electric shocks down to a phantom limb? Has my brain finally realised that the nerves END where the stump ENDS?

I'd like to think so. The pain started to get less when I took meds that actually worked for this neuro-phantom pain. And let's face it, most of the standard pain medication they make us try just doesn't touch sides with most of us.

I honestly think that after 16 years, my brain is finally behaving! :happy:

Oh hang on. Maybe not completely.....LOL....that would be 17 years.....

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Ally, I do believe u have forgotten to name the drug....is it illegial.

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LOL Ann!!

No actually, it's not illegal, but highly controlled.

To be fair, the first drug I asked for after all my research was Methadone. Methadone is a potent neurological pain killer. After spending much time with my doctor, she said "let's first try TEMGESIC (Buprenorphine SP?), if that doesn't work, we will go the Methadone route". Temgesic is only slightly less harsh than Methadone.

Temgesic and Methadone these days are primarily used to treat heroin and crystal meth addicts during their rehab. Addicts have to report to their clinic to collect one pill every day. They are never given more than one at a time. I don't know of anyone else who uses these drugs for pain. Maybe cancer patients? Not sure.

If I did not have a solid relationship with my doctor, and she did not know my history, and if I had not gone in with tons of backing documents and a long list of why ANY other drug would not work for me (including other morphine based pain killers, epilepsy drugs etc), she would not have allowed me to try this. If there was ANY possibility and I would have abused these meds, she ran a very real risk of losing her licence to practice medicine.

The first time I used a .2mg sublingual Temgesic pill, it made me very sick and I was a literal zombie for 2 days. BUT IT WORKED!

The trick is to know when to take a pain killer. If you wait too long, the pain killer is ineffective. With Temgesic and the horrid side effects, I ran a very fine line for a long time.....not wanting to take one in case the phantoms were just a random "couple of hours" pain run, or the phantoms would be the start of days of pain.

I am NOT advocating that this drug is good for everyone. It is a harsh drug. But I used it with care, and I am very happy to say that today, I think I have my phantom pain very well under control.

The first time I walked into a chemist with a script for Temgesic, the chemist looked at me like I had crawled out from under a rock and had horns on my head. He really did give me a shifty look. And I have to admit, I felt uncomfortable taking them and walking lop-sided out of his pharmacy!

Ann!!! Eish........... LOLLLLLLLLLLLLLL!

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PS to the mods.....not sure if naming the meds is out of line. If it is, please forgive me and delete my last comment. Ta.

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We've had other "named meds" threads, Ally...you're not advising others on "how to get the med," so I don't think it's a problem. Plenty of others have posted their experiences with drugs that are, acutally, less-than-legal...you had a prescription from a legit doctor and filled it through a legit chemist. If it worked for you, I think that's a success! :biggrin:

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Glad it worked for you Ally....and the reason I thought it might be illegal was due to the fact u kept dancing around the name. Yes, Cherylm is correct. We had others tell us of some that were the only drug that would stop those nasty pains. BUT like u they did not condone everyone to use them. They were just explaining to use that was the only drug that would help them.

Have a good day. Been out of electricity for 5 days...hate it.....and yes { LOL} I did keep my bills paid. Had a bad storm decide to go through Ohio and lay down a huge amount of timber. Bought a generator today and when we got home, the electric fairy had come to visit. Guess I am not much of a camper {no power, stove, AC and heat hovering @ 102. :rolleyes:

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I am glad that you have found some relief Ally........

Ann, I saw the storm damage on the news... Hope you get your power back soon.........

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Ally, I do believe u have forgotten to name the drug....is it illegial.

arnt those what we want lmao

i had the same issues you were having with phantom pains and i loved the response youll just have to live with it. i lived on muscle relaxers, percosets, morphine patches, pain meds i cant pronounce. they never truly helped i just stayed stoned alot, i can tell you not the best thing to be.

i tried therepys and even acupuncture which let me inform you acupuncture involves being stuck with needle, which at the time i was unaware of and im not a fan of needles at all so lets just say we didnt get along well.

finaly they did a ladicain drip which works i go in at 1-2 times a year to get a drip done and its not that bad. i still get my spells but no were near as bad or frequent

Glad it worked for you Ally....and the reason I thought it might be illegal was due to the fact u kept dancing around the name. Yes, Cherylm is correct. We had others tell us of some that were the only drug that would stop those nasty pains. BUT like u they did not condone everyone to use them. They were just explaining to use that was the only drug that would help them.

Have a good day. Been out of electricity for 5 days...hate it.....and yes { LOL} I did keep my bills paid. Had a bad storm decide to go through Ohio and lay down a huge amount of timber. Bought a generator today and when we got home, the electric fairy had come to visit. Guess I am not much of a camper {no power, stove, AC and heat hovering @ 102. :rolleyes:

we got hit by the same storm what part of ohio you from i live in camden which is 15-20 min from richmond

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@Mr Gimp - do you think that since you started using the Lidocain drip, your pain is less frequent? What I am trying to find out, is......since I started my own horrific pain meds, I can see that my phantoms are really taking a back seat. Maybe my body is just terrified of the stupid side effects, but maybe, just maybe, once you get to control the attacks.....they come less often...and less often.....etc ad nauseum. You know? Have your pain attacks been less severe since you started Lidocain, and do you think there is a connection there?

@Ann - I am SO not a camper. And if I was prior to our move to this broke-down farm, I would most certainly NOT be a camper now. If someone mentions "candles and romantic" in the same sentence, I am likely to collapse in a jibbering heap! :laugh:

On a more serious note, because I started this thread, and I do completely believe that my choice of treatment "cured" me.....I would be remiss not to steer everyone to this Methadone link.....

http://www.drugs.com/news/methadone-pain-relief-leading-cause-fatal-overdoses-cdc-39086.html

Nobody should have to live with this kind of neurological pain. Unfortunately, treatment for phantom pain varies from patient to patient. Do your research. Find your drug of choice. Cause sure as God made little green apples, nobody is going to do it for you!

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hey ally i believe they have because it was a living hell till i started the drip then after that the difference between night and day. and i can tell when its time for another drip cause it gets worst, but once i get it again...oww sweet relief. i dont know if it works for everyone but it did for me and ive talked to several others who have had the same result. the best part is getting off those meds

my amputation was due to trauma so i dont know if that makes a difference but id say talk to your pain doc and talk to him about it. here in america they due that procedure but i dont know if they do it were your from but with as strict as the fda is id say they would do it to

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Ally, I do believe u have forgotten to name the drug....is it illegial.

arnt those what we want lmao

i had the same issues you were having with phantom pains and i loved the response youll just have to live with it. i lived on muscle relaxers, percosets, morphine patches, pain meds i cant pronounce. they never truly helped i just stayed stoned alot, i can tell you not the best thing to be.

i tried therepys and even acupuncture which let me inform you acupuncture involves being stuck with needle, which at the time i was unaware of and im not a fan of needles at all so lets just say we didnt get along well.

finaly they did a ladicain drip which works i go in at 1-2 times a year to get a drip done and its not that bad. i still get my spells but no were near as bad or frequent

Glad it worked for you Ally....and the reason I thought it might be illegal was due to the fact u kept dancing around the name. Yes, Cherylm is correct. We had others tell us of some that were the only drug that would stop those nasty pains. BUT like u they did not condone everyone to use them. They were just explaining to use that was the only drug that would help them.

Have a good day. Been out of electricity for 5 days...hate it.....and yes { LOL} I did keep my bills paid. Had a bad storm decide to go through Ohio and lay down a huge amount of timber. Bought a generator today and when we got home, the electric fairy had come to visit. Guess I am not much of a camper {no power, stove, AC and heat hovering @ 102. :rolleyes:

we got hit by the same storm what part of ohio you from i live in camden which is 15-20 min from richmond

I don't believe we have had one that bad for a long time...pain in the a$$ isn't it. I think I love your sense of humor BTW :blink: . I live about 20 miles from Athens, Ohio {OHIO UNIVERSITY} in a small {don't blink or u will miss us} town of "coolville". Glad to meet another buckeye. Isn't richmond where they have the childrens amputee camp every year?

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i dont think so i believe its in eastern ohio

but i know were athens is ive done gunshow and some friends up there

i ment to say richmond indian

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Hi i only had my below knee 7 weeks ago and around a week after the phantoms kicked in and wow did they kick in!!! I tryed meds and am now slowly stopping them,, the cure for me was mirror therapy wow it works,, i have no phantoms now but if i do get any i will right back to my mirror, :biggrin:

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