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Posted 2/1/2008 3:22 PM (GMT 0)
Hi,

I'm 43 yrs old and injured L4/L5 1998.  Had 3 unsuccessful surgeries which led to pain management doc prescribing Oxycontin.  After 7 yrs I'm on 240mg/day.  Just found out that my insurance will only approve 90 pills per month (120mg/day).  My doc has mentioned a drug holiday in the past and I'm terrified that he will use this situation to do this now.  I already cut out 40 mg/day.  The effects aren't too bad right now.  The pain is rising.  I had a really bad experience 6 years ago.  When the original doc prescribed Oxy's, he really said nothing more than it would help better than acetaminaphen.  I, like an idiot, didn't lock it up.  To make a long story short, my son was stealing them (didn't know) and eventually he stole 50 of my pills and I ran out.  The doc wouldn't give me anymore..nothing to help with withdrawal.  I was treated like I had taken the pills and he was going to penalize me.  After 10 days I ended up in the ER and the doc told me that if I hadn't been on such a high dose of Neurontin (3600mg/day); I would've died.  The doc ended up putting me back on the Oxy's and after switching doc's here I am.  THe memory of that event has left fear in me.  I'm so scared of going cold turkey off this drug.  I've been researching and would like to know if ANYONE knows which drugs would help with the withdrawal symptoms AND what I can do to help with the pain I'm going to experience (which initially led them to put me on this drug in the first place!!!).  I think that doc's should have to go through the withdrawal symptoms themselves before they do it to their patients.  If they did...they would handle it differently!!

Please get back to me...ANYONE!

Thank you so much.

Mabakhrts

herman604 at zoominternet dot net

(I rewrote your email address so the web 'spiders' can't harvest it and start spamming you like mad)

 

Post Edited By Moderator (Chutz) : 2/1/2008 10:15:28 AM (GMT-7)

Posted 2/1/2008 5:21 PM (GMT 0)
Hi Mabakhrts,

I'm sorry for the situation you're in right now. It's very frustrating when insurance companies start prescribing your med's. It happened to me this January when we had to change insurance companies. If you need help withdrawing you can ask your doc for something called Suboxone. It's a medication to help relieve the misery of withdrawal. Also, consider something like Gramps suggested...I had to switch to morphine cause they wouldn't pay for oxy. It's called MS Contin. So far it's doing pretty good. A few headaches but otherwise OK. And it's cheap. you may be able to cover the extras yourself or the insurance company will likely pay for it all. Please take care of yourself and keep in touch. If you want to email just click on the little envelope under may name over there <---.

Chutzie
Posted 2/1/2008 7:06 PM (GMT 0)
Methadone is a good option, it has a much longer half-life than oxycodone (even in the oxycontin form the effects of methadone as supposed to be much longer lasting). If you have to go off opiates all together your doctor can prescribe you a medicine called clonidine. I just went off oxy myself and the clonidine really did help with the withdrawal. I was on a much smaller dose though, so I'm not sure how much clonidine would help. I was off it for about 3 or 4 days and I started to feel better (meaning very few withdrawal symptoms) and I really think the clonidine was the reason. I ended up back on it.... But thats a whole other can of worms. Buprenorphine (http://en.wikipedia.org/wiki/Buprenorphine)can also be used as Chutz mentioned, but it has very strict regulations and you would have to find a doctor who is allowed to prescribe it. One issue that I see with Suboxone is that it's often used to treat addicts so you could have a "red flag" on your record if they see Buprenorphine on it. My sister in-law is a pharmacist and she brought up another good point about suboxone, most often it's used as I said to treat addicts, so the doctors who prescribe it are usually addictions specialists and not pain management doctors so they won't really know as much about how to deal with your pain. Sorry if my post seems garbled, I have to many thoughts running through my head about this subject (and I just started taking Lyrica so I'm a bit fuzzy). Good luck.. And keep in touch here! This is a great group of people!!
Posted 2/2/2008 12:15 AM (GMT 0)
If you find yourself experiencing withdrawls, Defenitly request clonidine if you become very uncomfortable. It what they use in a medical detox setting to keep people comfortable coming off opioids. Of course Hot baths are excellent at relieving sore joints that can happen with withdrawls especially with epsom salts. Chamamile tea..a couple cups is good for relaxing. Ginger is amazing for an upset stomach. But try to get real ginger. Ginger ale and ginger tea dont work quite as well as the real thing. Immodium is good if you start getting stomach cramps...dont qoute me on this, but I believe there is a small(very small)amount pf an opiot type subtance in it that really helps your intestines. Of course not enough to ease actual withdrawl symptoms...but defenitly helps your intestines which start working over time during withdrawls.
If anything else comes to mind I'll jot it down
I hope your feeling okay. If you start feeling very bad please seek medical help...a majority of the time opioid withdrawls are not as dangerous as alcohol or sedative withdrawl, but they can increase your blood pressure and cause big problems.
Posted 2/2/2008 4:48 AM (GMT 0)
I second the chamomile tea, and hot baths! Loperamide (immodium) is an opioid receptor antagonist, so hazelB is correct about that. Some people say that immodium helps to ease WD symptoms but to my knowledge there hasn't been any real clinical study (I could be wrong). I know that long term users of Loperamide can suffer the same WD symptoms as other opiates. I never heard of useing ginger, I'll have to keep that in my arsenal. There is also a herbal type thing called Calms Forte that helps ease some of the anxiety (if you don't have a rx for some type of benzo).
Posted 2/2/2008 9:23 AM (GMT 0)
Oh yeah..03march, you reminded me of the other ones...
Velarin Root and belladonna...very similiar to the effects of valum? but over the counter herbs in any health food store. You would defenitly want to mention it to your doc though if your taking any more meds cause they work on your CNS as a depressant. There safe in small amounts and I'm pretty sure you can get Valarian Root in a tea..I dont know about belladonna, you may only be able to get that from an hebalist. But they can sometimes have the oppposite effect and make you speedy. But thats pretty rare(happend to me bt with me everything seems to work backwards...except for opiots..thank god for small favors!!) Alot od people find them helpful. But if anyone wants to give em a whirl for withdrwals and your on any other meds...check with a doc first!!!
Posted 2/2/2008 9:29 PM (GMT 0)
Uh forget my sug about the belladonna...I had no idea it had to be measured out by a trained proffessional...my friend has taken it in the past and reminded me today...I guess its poisonous if not the perfect amount...no point in messing with something like that!!
But valarian safe and very effective, availible in tea form from any natural foods store...S
Posted 2/9/2008 5:01 PM (GMT 0)

Wow,

What a great group of people you are.  Thanks for all of the suggestions.  First, 3Mach..you mentioned you started taking Lyrica.  I just went off it cold turkey 2 months ago.  I didn't have any problems when I went off it..until now.  I started having random dizzy spells, actually, it's like a wave of dizziness from the left side of my head to the right.  It was so bad once that I actually threw up.  Be careful, you shouldn't do as I did, if you're going off of it.  My doc prescribed it for nerve pain, but, I'm on 3600 mg Neurontin and that's fogged me up enough, the Lyrica was enhancing my fuzziness and really damaging my short term memory. Just be careful.  For an update...my doc wrote a letter of medical necessity to my ins. co. and haven't heard back yet.  I'm paying for 15 days of Oxy (ouch!) for now.  This won't be a long term solution, it's just until we see which way the decision will go.  He was quite upset that someone sitting on a panel at the insurance co would make a decision for me, without ever examining me or knowing my circumstances.  I noticed, when I was there, that he advertises Suboxone.  Yes, you're all right...it's specifically for drug addiction.  I think it's horrible that we all end up being the victims in the end.  None of us asked to be injured or in pain...none of us wrote out the prescription for these drugs.  All we are guilty of is following doc's orders, taking everything as prescribed and in the end...we end up with the label when things go south with the insurance.  I've read so many forums where people can't believe our doc's didn't warn us when they prescribed some of these narcotics.  Well, I can attest that they don't.  When I was given this, it was pitched as a better medication than Vicoden with better pain coverage.  Never was anything mentioned that it can ruin your life.  Or your body and mind!  I think something has to change and the doc's need to take some responsibility in these situations.  No one should have to worry about being labeled a drug abuser for needing Suboxone to help in getting off a narcotic.  But it happens all the time.  Someone mentioned that the withdrawal isn't as bad as alcohol, etc...I can attest that I almost died from sudden withdrawal of the drug on day #9.  If I hadn't gone to the ER, I wouldn't be writing on this forum.  Thanks again, for all the advice..if anyone has any suggestions, please keep them coming!

Mabakhrts

Posted 2/9/2008 7:35 PM (GMT 0)
I find that so interesting that opioid withdrawl became that dangerous for you. I only ask for personal interest. Do you have high blood pressure or past or present heart problems? you dont have to answere that...just thinking out loud really.  Its not ususally that dangerous. I worked on a detox for 5 years and saw only one person come close to fatal withdrawls because of a seizure condition they had.  Thats why the insurance companies...****ers...

are trying to faze out medical detox settings for opioid users. Before I left they had started denying covered time.  People had no choice but to either leave with active withdrawls or pay out of pocket. I dont think they should faze it out as you never know just who is going to have a medical emergency.  And although they are rarely fatal they will make you want to die.  I hope you made your doc well aware of how dangerous they got for you. I'm hoping that people will speak up to there docs and insurance companies so they stop turning people away from treatment.  It makes me sick to think about. but now there is that suboxone.  I think its both good and bad for us.  If they can change the stigma of it, then we will be much more comfortable coming off our meds. Why should we have to suffer through withdrawls? I think when you use recreationally then withdrawls are an important part of that process, you can see then what it does to you and helps remind you what you dont want to do again. But for us that is not tha case.  For us to be labeled addicts because we dont want to suffer is rediculous.  We are the ones who it should be used for. We are doing everything right...

I'm hoping everyone who fights to educated the public and medical profession will help to change stigmas attached to the use of suboxone. 

For the dizziness and such it sounds like your withdrawls lasted quite a while.  Withdrawls can last for months. dizziness, nasusia, stomach cramps...some people find that after they stop long term pain meds there body is never the same.  Yet another draw back...but well worth it if you can function better with the meds.

Posted 2/10/2008 5:01 AM (GMT 0)
Hello HazelB,

Well, as far as my withdrawal in 2002, it was horrible.  I stayed in bed for the most part. It was 4th of July, 90 degrees and I was laying in bed under a heating blanket on high.  One minute sweating, the next drenched and freezing.  I remember going downstairs and my sister had come up to visit and take care of me.  Well, we decided to play a game (to take my mind off of it) and as I was sitting there, it felt like all of the blood drained out of my head and face.  I layed down on the couch and started having chest pains.  The pains started out mild but within 10 minutes it felt like someone was sitting on my chest and I couldn't breathe.  My sister and husband scooped me up and took me to the ER.  I don't remember alot past that point, I DO remember the doc telling me that if I hadn't come in, I probably would've died at my house.  Everyone's body reacts differently to things.  I was never diagnosed with any heart disease or such in the past.  I was generally healthy my whole life.  I think the dose I was on and coming off so quickly just threw my system in to SOS mode.  The saddest part of this story (and I hope people would read this carefully), when I was given this drug, it was becoming popular among teenagers and addicts.  Well, my short term memory is horrible and I remember putting all of my meds in the cabinet (not locked up, as they should've been from the beginning) and I would notice a few pills missing here and there.  I chalked them up to my taking too many (perhaps)..NEVER did I imagine it was my own son experimenting with this drug.  Well, about 2 years into taking the Oxy, I came up 50 pills short.  Of course, too soon to get a refill from the pharmacy.  I was screwed.  I knew I didn't make that big of a mistake!  To make a long story short...I pressed charges against my 18yr old son and made him move out of my house immediately.  The doc wouldn't give me anymore Oxy, even though my son admitted to him that he stole it, etc.  I don't blame the doc for that.  He tried putting me on morphine, duragesic patches, etc.  Nothing worked.  Finally, the doc did end up putting me back on Oxy.  (3 months later)  My son went through rehab, and I'm happy to say, he's been clean since 2002, is married, happy and we've got a better relationship now.  I just had to pay for a 15 day prescript of Oxy ($399); the pharmacist cut me a break...should've been $499.  The price went up today.  That's steep.  I'm hoping the insurance company will grant me the medical necessity and pay for the full prescription, otherwise, I'll have to wean down and go on something else.  my pain level is horrendous (spelled wrong??).  I'm a mess.  Thanks for all of your advice/support. It's appreciated!

Mabakhrts

Posted 2/10/2008 6:50 AM (GMT 0)
I just wanted to say kudos on doing the right thing for your son. Alot of parents try to protect there kids and end up making the situation worse for the future. It must have been very difficult for you to do but paid off in his health and happiness!
I hope the insurance company does cut you a break. When I used to have to work with them and they were refusing to do the right thing. I would ask them if they were dying whoever I was working with the help they need. They would quicky change there stance as they never want to be seen as the responsible party when peopledont get help. It doesnt always work, but if they back you against a wall you might want to put it back on them before taking higher action with there patient advocates.
I'll cross my fingers for you.
Posted 2/10/2008 5:54 PM (GMT 0)

Gramps,

I guess the focus of my topic is the "withdrawal" symptoms...I, just like you, live everyday with pain.  My pain level is never any better than a 6.  I had a butcher operate on my back 3 times within 6 months and left me with more nerve damage than anyone could imagine.  The withdrawal symptoms make the pain worse, of course.  I'm not sure where you're going with your comments, I'm sure they weren't meant to put me down for focusing on the withdrawal symptoms instead of the pain associated with going off your meds...but, some things in life have become a "given" for me.  I haven't slept in bed with my husband for 10 yrs.  I can't lay down at all.  I sleep in a recliner downstairs.  I have developed many secondary problems as a result of the mistakes the dr's made initially.   IF I'm going to have to comee down on the Oxy's, the doc can find another way to control my pain through a different type of medication.  I have faith in that.  BUT, if he doesn't help me in coming down off of 240mg of Oxy's/day and I have to cope with the withdrawal on top of the pain..that's unbearable to me, physically and emotionally.  We all have different ways of coping with our situation  We all have fears due to our experiences.  No one is wrong or right.  All we can do is share and try and get each other through the day.  For me..I KNOW I will never be pain free.  That's not an option.  I wish I could change that, but I can't.  I try to change the things I can and accept what I can't change and HOPEFULLy I'll be able to recognize the difference.  God Bless to all.  Have a pain free day!

Mabakhrts

Posted 2/10/2008 11:01 PM (GMT 0)
I can understnad what your saying Gramps. I think, at least for me when or if I go off the pain meds(I always like to think "when") I will know as much as possible what to expect in the area of pain becuase I've experienced an unhuman amount when no one would treat me. And although it may be worse than I remember, its familiar. If I ever have to experience withdrawls for whatever reason, I have no idea what those feel like. Will it be so bad that on top of my pain I have to go to detox or what not. What I take out of all these posts is that people are really nervous on top of what there used to. Lord help me because if I have to go off my pain meds before I'm ready I dont think I'll actaually make it.
It also depends where the pain is. I was actually thinking this past week when I had the stomach flu, which is almost identical to withdrawls, that throwing up made everything so much worse. But in my case my pain is in my abdomen and having to tense my muscles like that caused me to have spasms, so for me withdrawls would actually cause more pain than just being off the meds. But thats just me. Hopefully I'll be in a remission when I go off and the withdrawls will be my only issue.
Posted 2/11/2008 1:43 AM (GMT 0)

HazelB,

What do you have that can go into remission?  I read your diagnoses underneath your post, the endometriosis, I've heard of (don't know alot about it though).  I'm curious.  I can relate to what everyone has said so far.  I got suicidal 2 days ago.  My pain shot up the roof.  I'm so worried that I'll have to decrease my pain med and God only knows what's hiding behind 240mg of Oxy's.  That's frightening to me.  I guess as you all said..it's the unknown.  I feel for each and everyone of you.  I'm in your positions and have been in the past.  Why do you have to go off your pain meds before surgery??!!  Gramps, are you the one who had back surgery recently?  What did they do?  I'm new here so I'd love to hear your stories.  If they're posted somewhere, let me know so I can have a better understanding of your journeys.  It's so weird.  10 yrs ago, I had a worker's comp nurse working with me to try and get help when 2 back surgeries failed miserably and no one would touch me.  I remember asking her what the difference between post op pain and chronic pain was...she said "time"...I lost everything back then...it was a bitter sweet situation and has forced me to look at myself.  I'm stronger than I ever thought I was.  The pain I accept each and every day shouldn't be acceptable.  It shouldn't have become a way of life for me.  There's no quality of life for me now.  My good days are very mediocre, at best.  I'm sure you all know where I'm coming from.  Please let me know your journeys.  I want to know your stories.  God Bless each and everyone of you.  Have a pain free evening.

Mabakhrts

Posted 2/11/2008 11:07 AM (GMT 0)
Sounds like youve been through alot gramps...well that goes for all of us too. I think we should all equally be proud of ourselves everday we dont give into our pain. Gramps I think you would like some of the info in my blog...I have written a small article on Narcotic Pain management. Although I focus alot on Interstitial Cystitis because it is still so commonly under treated with narcotics, its still for chronic pain sufferes in general. I believe the article is under "some common treatmenys"(really I should post it "some uncommon treatments") anyhow check it out
its www.icangel.wordpress.com
Mabakhrts...alot of people dont know much about interstitial cystitis(IC), I had never even heard of it before it hit me like a ton of bricks! But somehow you can go into a sponanious remission for a day, week, year or for those lucky enough...many years. They dont know why or how. In IC there are rips and tears in the protective bladder lining, so the acidity and toxins in the urine are constantly brurning the underliying bladder wall. it comes in all sizes mild, moderate and severe. I have a severe case. So for me it feels like someone constantly rubbing salt or vinegar into an open wound. Except its deep and internal so it fels that much worse. I'd say my daily pain level is at a constant 6 0r 7. 8 on my bad days and 5 on my good ones. Rarely does it get below a 5, although it has and I love those times!! When my endo puts its 2 cents in every month my pain is at a 9 and has closely reached a 10 althugh I go to the ER usually before I hit a 10...I cant even describe that kind of pain. The endo just makes it worse for me. Unfortunitly endo is pogressive and wont stop until menapause. Supposibly IC is not progresive, although thats still debated as EVERYTHNG with IC still is.
I was going to tell you yesterday that I can completely relate to you about not being able to sleep in bed with your husband. I have ben married for 2 1/2 years and havent slept in bed with my huband once since my diagnosis. I know how it can feel and what CP can do to a marriage. I feel for my husband, I truely do. But I also feel for myself and have to be as comfortable as I possibly can. The old saying is true even if you have no kids(aklthough I do consider my cats my children) If the wife is unhappy everyone is unhappy. Just wanted to let you know your not alone.
I have my whole story and some info on my web blog at www.icangel.wordpress.com you are more than welcome to check it out.
Be well
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