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PostPosted: Thu Nov 29, 2012 6:18 pm 
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I have been on suboxone/buprenorphine for approx. six years now. Initially suboxone (pill) was a miracle, but over time they started making me nauseous and I developed terrible headaches. Finally I was put on subutex and everything changed. No sickness and no headaches. Life was so much better, with absolutely no desire to touch any drugs, and I finally bad become a functional person again. The problem is that for the last three weeks I have been taking suboxone films and the headaches have returned with a vengeance. My doctor is retiring, and because of a miscommunication with another provider, he did me the huge favor of helping me through while looking for another doctor, but would do so only with films and not generics.

I've tried everything I could think of and every reasonable method I could find online, but nothing helps. I've tried taking larger doses and smaller, taking one tiny piece at a time over longer periods, spitting saliva after the film has dissolved, with caffeine and without, on empty and full stomach full, placing on gums instead of sublingual, and there are other methods I cannot think of at this moment, but nothing has helped in the least. I've also tried taking with (before and/or after) ibuprophen, naproxen, diphenhydramine, aspirin, Excedrin migraine, and even Tylenol (which makes me severely sick to my stomach). I had originally hoped that because 18-24 months (est) had passed since being placed on subutex, maybe the headaches would not happen this time. I’ve also hoped that maybe they would go away or at least become bearable over time, but if anything they have only become worse.

I feel as if I am constantly in a cloud… I cannot think straight and have become overly sensitive to light. I am afraid to drive because my ability to concentrate is shot. I have great trouble falling asleep, and often cannot do so until near complete exhaustion, and even then have great difficulty staying asleep for more than an hour or two tops. My appetite has greatly diminished. At first the headaches felt as if they started behind my left eye, but now my entire head hurts so badly that I do not know what to do anymore. At best they are severe, and at worst unbearable. The only real relief I have had since starting the films was when I found one and a half subutex from a previous prescription, and stopped the films for two days, so I don’t know what else could be causing this other than the naloxone.

As mentioned earlier, my doctor for the past six years is retiring, and no other local doctors will prescribe subutex, so this is not an option. Even the one who had been giving it to me never liked doing so and was always paranoid because he believes only subutex be abused. He did not seem to understand that either form can be abused, nor does he seem to believe what suboxone does to me. I have to find a way to lessen the headaches and get my life back. I do not even want to consider what the other options would be, so please… any help and or advice will be forever appreciated. I really do not know what else to do anymore. Thank you.


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PostPosted: Thu Nov 29, 2012 8:37 pm 
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Wow... sorry you have been getting those kinds of effects from having to take the film. All of these doctors just automatically assume that because one may want buprenorphine by itself with no naloxone that they are looking to abuse their pills. Doctors don't know what it is like to be in our shoes and because of the 100 patient cap they can simply turn a patient down and get someone to fill the empty spot immediately.

It sounds like you have tried everything possible when it comes to taking the films so I don't have any advice for you in that sense because I’ve never experienced anything from suboxone that made me feel nearly as bad as you describe. The naloxone isn't supposed to be digested when taken sublingually but it's obviously that that's not the case and is very powerful in low doses.

Do you still have any contact with your old doctor? If he hasn't stopped his practice completely then you still may be able to get in contact and see if he could write you another prescription for the subutex. Otherwise, I’m not sure what else you can really do if you can’t find another doctor to write a prescription for them. The side effects are clearly so bad you can't really function. Did you plan on staying on buprenorphine indefinitely? If not how long?


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PostPosted: Thu Nov 29, 2012 11:25 pm 
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Fireman wrote:
Do you still have any contact with your old doctor? If he hasn't stopped his practice completely then you still may be able to get in contact and see if he could write you another prescription for the subutex. Otherwise, I’m not sure what else you can really do if you can’t find another doctor to write a prescription for them. The side effects are clearly so bad you can't really function. Did you plan on staying on buprenorphine indefinitely? If not how long?


My old provider is the one who gave me the strips. Actually, he is not totally retiring, but is taking time off from seeing patients. He really did me a huge favor by giving me anything after the other doctor fell through, and even though I've told him many times about the past headaches, I don't think he believes it and instead thinks subutex just a preference. While I understand his position and it was tough staying on what worked, the life change was worth it. Trust may also be an issue, and even though I had not been dirty or used in a very long time, he never did any pill counts or anything else that would have proven my prescriptions were used only as prescribed. Sometimes I think he did/does trust me, and other times I don't.

As far as I know, no other local doctor will write for subutex other than for pregnant women. I really cannot blame doctors for this considering the BS they must deal with, but it seriously sucks for someone like me with a real reason for needing it.

As for staying on indefinitely, my old doctor has the belief that it is a long-term maintenance medication, and after getting my life straightened out, I agreed. Now I really wish I had done more to taper off, but had been working on tapering xanax instead. It was just to the point that I had a routine that worked, so I didn't stray from it. I would much prefer to not be tied to anything, but with the headaches, I do not see how I can comfortably come off using the films unless there is some way to control the side effects. Once my subutex ran out, there was a week or so until I was given the films. During that week I went back to using other things to maintain myself and it really scared me. Not a life I ever want to go back to.

Thanks for the kind words.


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PostPosted: Thu Nov 29, 2012 11:52 pm 
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sevenfive,

I hate that you are having such difficult times with the suboxone.

From the description of you symptoms, it sounds like a reaction to the naloxone to me.

The manufacturers of suboxone have a hotline you could try and ask them if they have any suggesstions:

1.877.782.6966

The FDA has a great website about the side effects of suboxone, maybe you could google that up for starters and follow links and maybe find a blog about suboxone where others have the similar symptoms, and hopefully soemone will give you some ideas on things to try?

You mentioned that your appetite has diminished, could this change in your diet possibly be causing some of this?

I take a multivitamin, since I have little appetite on suboxone too.

I used to be on xanax, I tried weaning myself off, and had similar experiences you decribed.
Did you start having these symptoms all at once or did they occur when you started weaning off of the xanax?

I had my eyes examined and they were casuing some of my headaches abouT a year ago.

I wonder if you could get a referral to a pain clinic where they would prescribe you the subutek?

Caffeine, either none or too much can also cause the symptoms you describe, do you use drinks with caffeine.

Perhaps make a chart from back when the symptoms started, and maybe a change in your lifestyle could have triggered these symptoms?

Some people I know prefer methadone since they were not able to handle the suboxone side effects.

Hang in there, I know you will find the answer to what is causing your problems with your health.

_________________
BUPRENORPHINE



Synonyms:

UM-952;Lepetan;rx6029m;Subutex;Temgesi;Buprenex;NIH-8805;Temgesic;CL-112302;Buprenorfin


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 Post subject: Re: side effects
PostPosted: Fri Nov 30, 2012 4:14 pm 
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boxer wrote:
sevenfive,

I hate that you are having such difficult times with the suboxone.

From the description of you symptoms, it sounds like a reaction to the naloxone to me.

The manufacturers of suboxone have a hotline you could try and ask them if they have any suggesstions:

1.877.782.6966

The FDA has a great website about the side effects of suboxone, maybe you could google that up for starters and follow links and maybe find a blog about suboxone where others have the similar symptoms, and hopefully soemone will give you some ideas on things to try?


Thank you. I will give this a try and hope for the best.



boxer wrote:
You mentioned that your appetite has diminished, could this change in your diet possibly be causing some of this?

I take a multivitamin, since I have little appetite on suboxone too.

I used to be on xanax, I tried weaning myself off, and had similar experiences you decribed.
Did you start having these symptoms all at once or did they occur when you started weaning off of the xanax?

I had my eyes examined and they were casuing some of my headaches abouT a year ago.

I wonder if you could get a referral to a pain clinic where they would prescribe you the subutek?

Caffeine, either none or too much can also cause the symptoms you describe, do you use drinks with caffeine.

Perhaps make a chart from back when the symptoms started, and maybe a change in your lifestyle could have triggered these symptoms?

Some people I know prefer methadone since they were not able to handle the suboxone side effects.

Hang in there, I know you will find the answer to what is causing your problems with your health.


My appetite has changed only since the switch to films, and only after the headaches began, so unfortunately I believe it is safe to assume diet is not the cause. That said, and since I am at the point of trying anything, I will make myself eat regularly and properly from now on instead of the rather unhealthy one meal a day I've been having lately. The vitamins are a good idea regardless (headaches or not). Thank you.

I had been on xanax for many years, but started weaning myself off a year or so ago. This was my choice and was not pushed by my doctor. I really had no issues with weaning off as I did so at my own pace, but lately I've been taking more since it is the only thing I've found that helps me relax. This is not good since even if I could find a doctor who understands what I am going through with the headaches, locally it is very rare for xanax to be prescribed with suboxone/subutex. Just another worry I do not need right now.

While my vision is not perfect, I did not have any issues until starting on the films. Lately, I have avoided driving as much as possible not only because of the concentration issues, but also because of my sensitivity to light, which also only started after switching to films. During the day, it is almost always too bright for comfort, and at night, the headlights on oncoming cars cause a lot of pain. I probably should have an eye test anyways, but again, all this started after the films so I can only think it an effect and not a cause.

I normally do drink caffeine (coffee, etc) and since the headaches started have tried keeping my intake the same, drinking more, and cutting it out entirely, but nothing has helped. As for a pain clinic, I will look into this (thank you). The biggest reason I am on this medication is because of when I was prescribed methadone for pain (back injury from car accident 15 years ago). All was fine until the PA I saw took an unscheduled week off of work and I was made to go without my prescription for eight days. When she returned, instead of seeing her I was given a drug test and handed my prescription. A month later when I went in for my appointment, I was told by a nurse(?) they were kicking me off because of a dirty and refused to let me speak to any of the doctors. My records from that office are a mess, make no sense, and the dates do not match up, but total blame for the dirty is placed on me and I was labeled a "drug seeker". No mention is made about the week they refused to see me, so it is my word against theirs. Most pain clinics in my area are very hesitant to see anyone labeled a drug seeker, but I am not sure if it would be the same for subutex. I will look into this, thank you.

As mentioned earlier, in the past I was on methadone for pain, but the only two clinics in my area are about a three-hour (round trip) drive or a 6.5 hour bus trip away from me. While I have considered taking this route, I simply have too many responsibilities here so there is no way I could make the trip 6-7 days a week. Beyond this and even if I could, going to a methadone clinic would cause many family problems.

Please understand that I am not trying to give excuses, but only explaining why this whole situation is very difficult. I would like nothing more than to find a way to be able to handle the films. If I could get the headache pain down to a bearable point, I would deal with it. I've learned the hard way how to live with pain, but this is just too much. It is unbelievably stressful to every day have to make the decision of either taking something that makes life a living hell, or not taking it and going through an entirely different hell. Thank you for the suggestions and kind words... they are greatly appreciated.


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PostPosted: Sat Dec 01, 2012 12:04 pm 
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Hi sevenfive. You're in a predicament...that's for sure. I feel bad for what you've been through with doctors before & now. Sometimes, the medical establishment just really goes overboard. It's so unnecessary for you to continue to suffer when simple common sense tells you that you've obviously got a problem with some component that is present in Suboxone and not present in Subutex.
Which got me thinking...that may be the key. Beyond the obvious (naloxone) have you investigated the exact differences between the two drugs? You should be able to get ahold of a package insert for the Suboxone tabs and films, and for the Subutex. I would compare the ingredients, down to any additives, dyes, etc and see if anything stands out at you.
If you come up with any possibilities, then I'd recommend doing some research on those. From that point, if you come up with anything that even looks remotely like it could be the culprit, I'd try to determine if what you're experiencing is just some remote side effect versus a true allergy. If there is a possibility that you have true allergy to something, I'd get in touch with an allergist and see if there is any way to be tested. This way you'd have documentation that you are indeed entitled to be prescribed Subutex for medical reasons.
Anyway, I think it's probably a long shot, to be quite honest. But you sound pretty desperate to get this thing figured out and that's all i could come up with, as you've already done a good job of ruling everything out.
Best of luck. Sorry you're having a rough time.


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PostPosted: Fri Dec 28, 2012 12:41 pm 
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I just wanted to share my experience / if it helps just one person I have done my job. Anyone who gets headaches or migraines due to the bup (taken in any form) I have a tail that might help you. I never get headaches! I am 44 years old and I have probably got 20-25 headaches my entire life!! I don't know why, I am not a health nut, I DO have a lot of daily stress (which I feel in my back) but I NEVER get a headache. I have taken maybe 10 tylenol my whole life. AND NO, it's not the drugs I was taking that prevented headaches (long story, but trust me it wasn't the drugs). I am just one of those people that don't get them (even when I tried w/d cold turkey - Every single other symptom expect a headache.... NOW!! WIth that said, I am by far not a person of healthy means. I am obviously a recovering drug addict. Believe me I get my aches and pains elsewhere, but my head is not one of them.

NOW: Hopefully this will help all that get headaches from the bup. When I first started taking bub- ALL of a sudden, out or nowhere, I got a crushing headache. It felt like my skull was shrinking and crushing my brain. It hurt really bad. It was 10 times as horrible because I didn't don't know how to deal with it. I didn't know if it was the bup or a side effect from w/d.
LONG STORY SHORT!!! It was too much bup for my system.

TRY this : anyone who gets headaches.... you might be taking too much! You should lower your dosage by half! It took me forever to learn this lesson, but taking too much gives me a headache. I know you my FEEL you need more or a higher dose... but please give it a try. I think a high dose is our body's way of telling us "TOO MUCH"

I see so many headache stories and it breaks my heart. PLEASE try this (cut your dose in half) and see if you get a headache.

BEST and GOOD LUCK!!!


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PostPosted: Tue Jan 15, 2013 3:16 am 
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I have had horrible migrains for 2 years on suboxone. They would be so bad I would have to lay down and try to go to sleep. Horrible horrible migrains!
Recently my Dr. lowered my dose from 2films to 1 1/2 films.....The headaches went AWAY!!! I would have never asked to be cut down on my own and when he did it I was scared,mad,and I paniced. But it was a blessing in disguise because again, the headaches are GONE! Mybe lower your dose just a little bit. I know it isnt what most want including myself but it worked like a miracle. Hope you find relife.


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PostPosted: Wed Jan 16, 2013 2:53 pm 
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If suboxone is bothering you and not Subutex, I'd have to say the pretty obvious culprit is probably naloxone.
Your body probably doesn't mesh well with it.

The best thing I could suggest is try to find a doctor that would put you back on what worked -Subutex-. Or try lowering your dose substantially.

Hope everything works out, that sounds quite awful!

-WTBF


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PostPosted: Thu Jan 17, 2013 10:39 am 
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Last post from OP was Nov 30.


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