Re: Help with methadone question

[Guest guest]

>

> " rumblefish7194 " wrote:

>

> i have always had a fear of methadone. my new pain

> management person wants to take it. i agreed. but maybe this

> sounds dumb but i don't want to reach a point where i'm

> taking sixty mg up a day.

I have been taking methadone for several years now, and it

works very well for me. It is also very cheap.

If you don't like it, have your doctor switch you to something

different.

Kaylene

[Guest guest]

thank you for writing back and sorry for replying so late. i've been taking it

only for two months. i was so afraid of taking it that i started at 5 mg a day -

three times a day

but of course i am now on ten and next month i am sure it will be 15 3 x a day

and up. i know myself and i have a very strong tolerance. and i don't want to go

this route

i got hit by a car three years ago and have a brain injury that caused dystonia.

the doc really wanted me on methadone because of this. this being a chronic

condition. there was no talk of other drugs that she felt were appropriate.

i see her today. i am a nervous. thank you. sorry if this writing is hard to

follow

i just don't know what to ask for - besides methadone

> Carol wrote:

> Methadone could be right for you but I would try other things out there before

trying that. What are you taking now?

[Guest guest]

what other things?

oxycontin

ms contin

have tried all non narcotic medication and schedule 3's

my knowledge is limited to this area. if i had my way i would love to be in a

situation where i was taking something once or twice at most a day. with if

needed something for breakthrough.

> Carol wrote:

> Methadone could be right for you but I would try other things out there before

trying that. What are you taking now?

[Guest guest]

thank you. but it's very hard to get the images out of ones head of all the

people they known directly or indirectly who have gone through methadone

" programs " which are totally different but still leave it difficult not to see

it like this. the image of liquid handcuffs is hard to get rid of. even if i

have never been in a program before

> Cheryl wrote:

> So don't be scared of methadone. It's a very effective pain reliever that

just happens to have some bad associations because of its off-label use in

treating drug addiction. It was originally intended and still is simply another

opiate pain reliever, just like any other opiate.

[Guest guest]

as stupid as this might sound -sorry for what you've had to go through. i'm

pretty green to all of this. even though it feels like it's been forever and

i've been dealing with physical condition for i guess close to 4 years.

i have to say it does seem like you have been able to stay on a very, decent

level dosage wise, over that period of time.

i go back today. i appreciate what you said. hope ... well that's the word one

is supposed to know understand and believe

thanks

> Andria wrote:

> I hope you are able to find something that works, I had gone

> through many narcotics with little to no relief over 10 years but once I

changed pain docs, for comp paperwork reasons only, and my new doc immediately

dc'd the vicodin I have had nothing but pain relief.

[Guest guest]

Hi Andria,

Thank you for sharing your experience with methadone. It's such a controversial

drug that many pain patients, as well as docs for DEA reasons, are hesitant

about it. It sounds like you've gotten the pain relief you need with it like my

hubby! That's great. I really wish it had not given me such side effects because

it did provide great pain relief for my foot.

I, too, have DDD in my lumbar spine along with the RSD. I've seen a spine

surgeon about a spinal fusion but he won't touch me because of the RSD and its

nasty tendency to spread. The DDD is much less painful in day-to-day life than

my foot so I focus on getting relief for the RSD and my back benefits from the

meds for my foot.

Talking to myself is something I've become quite good at doing . Especially

negative remarks and arguing which isn't exactly a helpful thing to do for my

mental health. Glad I'm not alone there!

Keep doing what works to give you better quality of life and try to change what

doesn't!! I think that's the message we all need to hear when living with severe

chronic pain. It's a challenging journey that I never imagined before.

Take care,

Carol

> Andria wrote:

> I've been on Methadone since the end of August 2007 a few weeks before my

first artificial disc replacement and have been on it since without issues.

[Guest guest]

Well said, Cheryl. Just one thing to add is that even if you titrate slowly as

recommended by your doctor there is no guarantee that you will avoid going

through withdrawal when changing meds. My PM doc was really surprised at how

intense my withdrawal symptoms were after titrating very slowly off of

methadone. Every person is different just like every drug is different.

Hugs,

Carol

> Cheryl wrote:

> That doesn't mean you're addicted, it just means you have to titrate slowly

down off the drug instead of stopping cold turkey.

[Guest guest]

Cheryl,

That's a very good question. I wasn't left without any pain control for my RSD

because I was taking hydrocodone while ramping down with methadone. With every

decrease in dosage of methadone we increased the hydrocodone thinking that I

would avoid withdrawal. By the time I got off of methadone the thinking was that

the hydrocodone dosage would be high enough to counter withdrawal and give me

adequate pain relief at the same time. It just didn't work out that way for me.

Hydrocodone (Norco) didn't put much of a dent in managing my pain. Not sure if I

just didn't get good pain relief from that particular med or what. We were both

surprised by what happened. I immediately saw my PM doc about the withdrawal

symptoms and he prescribed a couple of things to help with it. However, the

withdrawal was incredibly intense.

In addition to working with my PM doc when the withdrawal symptoms hit me so

hard, I searched for, and found, a wonderful holistic medical doctor who works

with people going through withdrawal. Everything from oxycodone to crack

cocaine. His advice was extremely helpful during that two week period of time.

Carol

> Cheryl wrote:

> Was there a medical reason they chose to take you completely off one drug,

leaving you with no pain control, rather than switching you over all at once?

[Guest guest]

> Carol wrote:

> Getting off methadone so I could switch to other pain meds in search of the

right combo for me was a nightmare!

Carol,

Realize all narcotics will produce a withdrawl and I am surprised that you

Doctor did not give you valium to help with withdrawl but you are on it now.

There are so many combinations and rotating medication to prevent tolerance is

an effective practice for pain patients. I am so sorry you had such withdrawls

and there are effective medications to assist that.

It is something each of is concerned with and many patients take " drug holidays "

and don't know how they do it. Good Luck Bennie

[Guest guest]

> Carol -

>

> Why oh why did you have to titrate down at all?

> Was there a medical reason they chose to take you completely off one drug,

leaving you with no pain control, rather than switching you over all at once?

>

> Cheryl in AZ

Cheryl,

My point exactly and Most pain mangement doctors that titrate will give you

medications for the symptoms of withdrawl, nausea and vomiting, cramping.

This Doctor should have least done this and Carol states they gave her valium

later. I don't understand. Thats like Doctors given suboxene for addiction

problems for opiates supposedly when it is a pain medication itself. You have

to really ask the questions and no one deserves to experience withdrawl. Bennie

[Guest guest]

> Carol wrote:

>

> July 2009 I had another artificial disc replacement but this time in my neck

and even with that pain I never had to modify my dosages, or increase, and I

continued with my flexural for the muscle spasms. I have been able to decrease

my dosages from the prescribed 10 mg every 5 hours to 5 mg every 6-8 and

flexural 10 mg at night.

Carol,

Just to add that surgery brings with itself, its own problems and Degenerative

Disc Disease does not go away if you have surgery. Stenosis can occur causing

different pain so sometimes surgery does not allow for pain medication to be

reduced or taken away. Most of the time, fusions and disc replacement are done

for functional reasons. Just wanted to add what I tell and answer my self.

It is common and expected to rotate medication due to tolerance. Again, " The

Survival Guide for Intractable Pain Patients " by Dr Forest Tenent, has

equivalents and a list of common medication and practices and explanations. It

can be downloaded through PainTopics.org or an internet search.

This is a common challenge and if you pain management doctor is not familiar

with it, I would ask. Bennie

[Guest guest]

How did the doc appt go today? I understand being nervous only too well! Yes, my

PM doc decided to try me on methadone because RSD is also a chronic pain

condition and we hoped to be able to find one dose and just stay on that.

Some people are able to find that right dose for many years. I just haven't been

that lucky...so far. Still trying to remain hopeful that we'll find the right

mix and be able to stay on it for awhile.

If you've been taking pain meds for very long you typically build up a tolerance

to them.

Good luck and please keep us posted on what's going on!!

Carol

>rumblefish wrote:

>i got hit by a car three years ago and have a brain injury that caused

dystonia.

>the doc really wanted me on methadone because of this. being a chronic

condition. there was no talk of other drugs that she felt were appropriate.

>i see her today. i am a nervous. thank you. sorry if this writing is hard to

follow i just don't know what to ask for - besides methadone

[Guest guest]

Moderator's note:

Andria, I removed your address and phone number. There is no true expectation of

privacy in an internet support group.

Hi Andria

Thank you. I first hurt my back Saturday, January 28, 1994 at

6:50pm just 10 days before my 24th birthday. Funny how I remember that one

maybe it's because I hurt my back because of someone else's " helping " .

I had my first surgery April 95, I had an anatomical lumbar fusion at L3-L5,

right side. Anatomical because I refused the instrumentation literally minutes

before I went in.

I Injured my left lumbar and cervical spine Oct. 2001 but my neck went untreated

until the summer of 2008.

I had my first Synthes Pro-Disc (L)umbar artificial dis replacement at L5-S1

Sept. 2007 only 2 weeks after I started methadone. July 2009

I finally had my neck surgery with the Synthes Pro-Disc C(ervical)

at C6-C7. Three weeks after my first lumbar implant in 2007 I was back to work

in a group home with individuals diagnosed with MR/DD and dual diagnosis

(MR/MI).

I am thrilled with the result I had with methadone and even more thrilled with

my implants, so much so, I did a commercial spot for

my orthopedic surgeon. I've been with him since March 1994 and will never

change.

I don't typically respond to many of these posts, unless the topic is something

of interest or, unfortunately, I feel the need to squash a troll, obviously this

time it's for what these groups are supposed to be about, being there for others

who live with chronic pain. I am always open for questions so feel free to

contact me.

Andria M. Simpson

> " rumblefish7194 " wrote:

> i have to say it does seem like you have been able to stay on a very, decent

level dosage wise, over that period of time.

>

> i go back today. i appreciate what you said. hope ... well that's the word one

is supposed to know understand and believe

[Guest guest]

well i went to my appt - said i was still terrified about taking methadone.

reason for this is even though i have a chronic disease - doesn't mean i want to

be on pain medication 24/7. anyway i mentioned this and again she said methadone

is the only drug that works for this type of pain. " this type of pain " seems to

stretch over to all pain. I have dystonia.

all other drugs, ms cotin, duragisc patches, oxycontin are utterly different she

said and don't help with pain but only basically get you high.

one thing she said which i differ on is her believe that methadone is easy to

get off of. much easier than other pain medications. i couldn't agree with

that.

so i guess i will see her one more time and do what i should have done last time

which is to say i don't want to take and are you willing to continue to help

me:

if not i will have to return to the horror book of finding a pain medicine

doctor again.

THANK YOU ALL FOR EVERYTHING SAID

someone asked me what i did want?

i said anything long duration with possible breakthrough and even though most

people don't do this. with those medications you can take them 3x in a row then

stop for a day or two. and it keeps you more balanced. my opinion only

and even if i'm wrong, arrogant, even idiotic it's just the feeling i have in my

gut

> Carol wrote:

> How did the doc appt go today?

[Guest guest]

Find A new doctor!!!!!! I can not agree with that statement that all other pain

medication just gets you high! I take offense with that statement. big time!

I have been on oxycodene for 3 years. I do not get high. It gives me 90% pain

relief.

Everyone reacts differently to medication. They tried me on morphine which did

not work as well.

I would be cautious about methadone. I have heard that it really works for

people. but it must be titrated up and down. It is not a medication that

starts works right away nor can be stopped suddenly.

this doctor sounds really narrowed minded.

I hope you find a helpful solution.

Gentle hugs,

Tami

--- rumblefish7194 wrote:

>

> well i went to my appt - said i was still terrified about taking methadone.

reason for this is even though i have a chronic disease - doesn't mean i want to

be on pain medication 24/7. anyway i mentioned this and again she said methadone

is the only drug that works for this type of pain. " this type of pain " seems to

stretch over to all pain. I have dystonia.

>

> all other drugs, ms contin, duragesic patches, Oxycontin are utterly different

she said and don't help with pain but only basically get you high.

[Guest guest]

Kind of a sticky situation...I disagree with your doctor's comment that " all

other drugs, ms cotin, duragisc patches, oxycontin are utterly different she

said and don't help with pain but only basically get you high " . When you're a

chronic pain patient and have been on medication to treat the pain for awhile

there no longer is a feeling of being " high " . I would love to quit taking the

meds that I take to cope with the pain! But the simple fact is that as long as

my RSD is " ongoing and aggressive " as described by my team of doctors then I'll

need something to help me manage the pain.

I think you're right to ask her if she's willing to continue to help you even if

you won't take methadone. I'm curious about her statement regarding how

difficult it is to get off of methadone compared to other pain meds.

How's your level of pain overall? Is it fairly consistent or do you have certain

triggers that cause it to worsen?

Best of luck to you and please keep us posted on how things are going.

Carol

> rumblefish7194 wrote:

> all other drugs, ms cotin, duragisc patches, oxycontin are utterly different

she said and don't help with pain but only basically get you high.