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Avatar universal

~Methadone 6+yrs for Migraines - I WANT OFF~

I have been on Methadone 2 * 10mg every night at bedtime. I started taking on my doc's recommendation. I wish I would have listened to myself. This medicine scared me. I started it & I was thanking GOD & my doc because my Migraines were 100% gone. For the first time in years I had no pain!

After being on it for so long I want off. I stepped down to 1 pill in 1/2 pill doses. I did fine with most of the symptoms. When I got to 1 pill I started waking up in the morning & my brain was going 90 mph about stupid things - Like: lint, where does it come from, how does it get trapped in the lint trap, why do you only find it after your clothes go in the dryer??? = tooth picks - I wonder how many toothpicks you get out of one tree... Just stupid things that came at me so fast & made no sense. I could not get my brain to shut up!!! I would lay in bed for 45 minutes & I could not will myself up & out of bed to get ready for work.

I went back up to 1.5 pills. I have been here for 3 months. I am scared to go back down. I have no mental history or issues. I have a clean bill of health other than the Methadone. I do take Flexeril to sleep at night. I want off this medicine so bad. I am a Kaiser member. Kaiser wanted to give me Prozac... NO THANK YOU! They also wanted me to go to Group Therapy to help me deal with getting off this medicine. I have a very supportive family & friends. I don't need to talk to anyone> I just need to get this drug out of my system. I have tried to quit cold turkey in the past. I do good for about 3 hours & then I start with the mind games I play with myself. It *****! I don't like the way the lack of Methadone forces me to play mind games.

I want help getting off. Kaiser seems unable to help unless I see a Psych doc. I don't want any of that in my file! I have heard horrible things about what happens at Kaiser once that stuff gets written in your file. Every time you are seen or you call for advice they ask you " Are you thinking of harming yourself or others?" At least that is what I have heard... I could be wrong. I am just scared & want off desperately!

35 Responses
199177 tn?1490502134
I dont blame you I can not believe they used methadone for migraines with all of the non opiates choices these days .Getting off of methadone is SO hard luckly you are on a small dose but as you have already found out even at a low dose it H ell to come of off .I would go back to one you most likely will have to deal with WD then I would stay at 1 for a while until you have gotten where all the WD and a few more weeks before you drop again .I am sorry you are going threw this but you can get off it but is not going to be painless .hang in there pick a day to go down and stick with it we will be there to help you threw.
Avatar universal
I can deal with the shaking & sweating & even the cramps. It's the mind stuff I can't deal with. I feel like I am going crazy.
199177 tn?1490502134
I think you are going to have to go threw it unless you are going to spend the rest of your life on it .I dont think theres any way around it otherwise
Avatar universal
I feel so bad for you.  I can't believe they'd put you on Methadone for Migraines.  Like Avis said, all the other meds they have now.  And you are so young.  It's such a hard drug to get off of.  You will find lots of support on this site.  By the way, all that weird head/brain activity is what drives me insane also.  It will get me so freaky sometimes I just want to bang my head on the wall.
Avatar universal
We tried about 10 medicines before putting me on Methadone. It's been so long that I can't remember all the names like I use to. I know we tried, Maxalt, Neurontin, Topomax, Immitrex, Morpheine and a blood pressure medicine. I use to go get shots of Morphine or Demorahl. They would add an anti inflamatory & an anti nausea to my shot too.

I tried so many drugs. Some worked & some didn't. The ones that worked gave me horrible side effects. The Neorontin & Topopax did great but they turned me into a zombie. I forgot how to go pee. I would sit on the toilet for 20 minutes & nothing would come out. So - My doc took me off them because I had Kidney/liver issues! Whatever that means.

I know she meant well when she put me on Methadone. She saved my life. I was so far out in left field when I was going from medicine to medicine. I saw a neurologist. I was getting shots of BOTOX in my neck & back. I got steroid injections in the back of my head & shoulders. Nothing worked. I saw a chiropractor & an accupuncturist - I WAS DESPERATE !!!

I have a 7 year old daughter. She & my husband are my world. I just want to be me again. Back to the person I was when Ashleigh was 2. I miss that person. I feel like she is lost forever. I feel like hate is all I am full of. I know this is not me!
890982 tn?1259094785
I'm confused.  From your two posts, this sounds like a legitimate use of methadone for pain.  You haven't increased the dosage for over six years, you tried other things first, and it brought you relief.  Are there other side effects that you haven't mentioned, that keep you from being yourself?  On such a relatively low dose, I am sure you will be able to get off it if you give it enough time and put up with the mental and physical discomforts.  If the migraines return, would you go back on it again?  

I support your effort entirely, especially as you are so young.  I'm just being the devil's advocate because I am curious what levels of opiate use can be considered legitimate.  I have a relative who suffers from pancreatic cancer, among other serious conditions, and he was given 3-6 months over two years ago, and has been in and out of hospice several times.  His morphine dosage by this time is around 300 mg/day, and although he is presently ambulatory and reasonably alert, he will be on morphine for the rest of his life, which at 74 is probably not too long.  If he should make a miraculous recovery, he would have a serious addiction problem, but as it is, that is the least of his problems.
Avatar universal
Hi~ Yes...I'm wondering some things,also.  First,you poor thing. I do understand completely how you ended up here. But,here's my question: Do you think the migraines are gone now?  What will you do when you get one,after being off the methadone? Can you go back to the doctor who prescribes for you?
I think there are some non addictive meds that can help you so you don't suffer so much.

Avatar universal
HI I was also prescribed methadone for pain and was on it 6 1/2yrs I had a fallout with my pain management dr and wound up at the local methadone clinic my use spiraled up to 150ml at the clinic...but ive been clean 188days now...coming off methadone has its own can of worms to deal with....it is doable but difficult a lot of people 1/4 the pills when tapering but it sounds like the physical symptoms haven't been your problem your experiencing the" mental mind screw "part of the withdrawal methadone my not get you high per/say but it defiantly makes the world a smoother place to live...once your at a low dose or off completely life comes at you at 100 miles an hour and in tec/na/color it seams impossible to quite ones mind...makes getting to sleep hard to...this is all very normal coming off methadone try not to get discouraged it dose get better with time but in the beginning it can be pritty ruff getting use to your mind coming back on line ...AFTERCARE helps a lot weather it be N/A or a substance abuse conslor but you need to proses your thoughts...without aftercare I wouldn't have made it ....it will teach you tools you can use to help with the racing thoughts and the rest of the mind screw you go thew.....it also gives you someone to talk thats been thew it and understand what your going thew...even the most supportive family member cant relate to what your feeling you need someone that can....I hope this helps you good luck and God bless....Gnarly      
Avatar universal
Again, I just feel so bad for you.....Methadone is such a severe opiate just for migraines.  Your must have been debilitating.  I agree with a lot of what gnarly says.  And I too along with vicky wonder what will you do when the migraines return..  

My mother and I suffer from migraines.  Midrin is a great one.  And I found Isollyl to be a great one as well.  But, Isolly contains barbituates, so if you have an addictive personality, I would try the Midrin first.  But, as long as the Isollyl are not abused and taken prn (as needed) then you should be ok with them.  It doesn't sound like you are an addict per say, just put on a very drastic medication..   I am glad you want to get off of it, the longer you are on the worse the long term effects are and the harder it is to stop.  

The industry is always coming out with new medications all the time so I am sure there is one out there for you.  I am just flabbergasted that they went right to Methadone and didn't try an ordinary pain pill first....or maybe they did?  I am just a bit confused about this.  I really feel for you and wish you lots of luck!
Avatar universal
We did try lots of different medicines for a little over 2 years. After trying the usual items I was given Methadone. I know my doctor saved my sanity. I am just hoping to get off so I can go back to the "me" I was before Methadone. My daughter was 2 when I went on it. I can't remember half of her life after 2. This sickens me. I can't get those memories back. I don't want to loose any more memories of her. This is one reason I want off. The other reason I want off is - What happens if I loose my medical coverage or I am unable to get my Methadone for some reason - I start to go through withdrawl... I won't be able to deal with it. I have tried. I make it a few hours before the mind games start taking their toll on me. I was very concerned before I went on the meth... I just wish I would have been told more about the adverse effects when you try to get off. And Kaiser does not do Detox like I want/need. For them it is all a mental health issue. SO you go to group & talk while you are going through withdrawl... That just won't work for me. I need much more help.. Not talking but teaching & helping. Almost like an overnight place. Like St. Helena in Calistoga. I spoke with them & the program sounds perfect for me. I just need to come up with the $3,000.00 to pay to get off this stupid drug. I don't have that kind of money lying around. I am starting to think that Methadone will always be a part of me & I will never get off it.
Avatar universal
well if methadone is the only thing that works for you, why are you wanting off it? i mean i would be scared to take the drug also...but if it is still working and you aren't abusing it, why get off it? i mean if your migraines are stable and you want to try reducing your dose slowly and see what happens, that's probably not a bad idea.

i would just be affraid that the migraines would return.
Avatar universal
I just don't see the point in continually taking it if I am no longer suffering from the Migraines. I saw a chiropractor a while back & he was able to fix my neck. Since then I have been wonderful & have not suffered at all!!!  I just want off
Avatar universal
You need to get off that crap ASAP.  It has caused me severe emotional and psychological problems.  It's worse than Heroin and should only be used short - term.  

I know exactly how you feel and again, I just feel so badly for you.  I don't remember my life for the 6 years I was on it.  In fact I had to have my gallbladder removed (not b/c of methadone) and at the time was on 160mg I was in severe pain and they kept injecting me with morphine, the anethesiologist said that the amt of methadone I was on was equal to 80mg of morphine I had been taking every day!  I got so scared, I mean what if I was in a terrible accident, nothing would help my pain.  He finally just sedated me, and after surgery I had a dilaudin pain box. :)  But, it was very scary to say the least and that's what prompted me to want off.

Slopez, please don't give up, I also found chiropractic medicine helped with many of my migraine prob as well.  Keep on looking into detox programs and I am sure you will find one, you should be able to even have the clinic you are at put you on a very safe and pain free taper.

Avatar universal
Thank you for your support! Sometimes I feel like I am stupid for wanting off and for trying to get off. My biggest issue is that I don't see why I should be stuck on this medicine when I no longer need it. That is like taking Birth Control (not for hormone therapy) after you have a hysterectomy. Pointless!

I have very few headaches & they are never as bad as they once were. I am in a much better place in my life and the stress I was under when I was put on Methadone is gone. I have a very supportive family & my two (2) bosses are willing to help me in any way that they can. They see how much I am struggling with this. They know I want off & can see why.

I do not have an addictive personality at all... Except to chocolate & music.. lol

I use to be a smoker but quit several years ago because I woke up one day & decided I was not enjoying cigarettes like I thought I was. I was simply smoking because I was use to it. So I woke up & stopped smoking. I have not touched a cigarette since.

I had Gastric Bypass surgery on 5/5/2008 & had problems after wards. I had to have a second surgery to correct the issues caused by the first. I had horrible issues with pain meds. I could not get out of pain because "Vicodin" is not strong enough to trump the Methadone. I was put on Dilaudid after I proved to the staff I really did need it.

I would like the chance to possibly have another child. Right now that is out of the question because I am on Methadone. I want off for so many reasons. The main one is so I can be part of my daughters life & actually keep the memories I build with her.

It's horrible to watch so much time go by & wonder "Where did it all go? It seems like it was just the other day... Oh, wait - 6 years have passed. WTF?"
Avatar universal
You have got some amazing will power...I envy you for that...I have always had an addictive personality.

The thing with Methadone is it will cure anything....depression, headaches, it will even give you self-esteem and let you think you can sing great too.  LOL  But, that doesn't mean it is for every body.

I think they keep people on it way too long.  I was on it for too long and the fact is it did help me get my together, but when I got my own apartment and had to pay rent.....I couldn't afford it anymore and they put me on a very fast taper.  Too fast!  They think you should be on methadone forever until you can't pay them any more.  
But, don't get me wrong Methadone and suboxone do have their places.  But, they should be used for short-term detox or for people in extreme pain.

Maybe your migraines were often and debilitating and the dr. got frustrated and just threw you on methadone....she prob thought she was helping you, but I just feel she could have tried codeine or even vicodin or percocet before methadone.  Methadone is long acting and has a longer shelf life, which means it's one of the hardest drugs to detox from.  Like I always say, Methadone screwed me up worse than HEroin, the only difference being, I knew what I was getting with Methadone and didn't worry about getting caught with it (legal).  Unlike Heroin, you could get rat poison and die or Fentanyl and OD.

Methadone may be great for some people, and I will not ever take that from them.  Heck, when I was on it I thought it was great.  I never had the urge to use.  But, looking back I now know that it caused more damage than it was worse.  And to be honest my life wasn't happy on it, I was merely content....Sort of like a security blanket.  It made me gain a huge amt of weight and I isolated myself.  

But, I was just thinking have you heard of the Naltrexone implant.  It may be called something else there.  You don't need the implant b/c you are not an addict, but they do a detox before the implant, that may be very beneficial for you, if they consider you a candidate.  I would think it's at least looking into.  It was done by Dr. Gooberman in MErchantville, NJ.  It's out of office, he gave you the meds to take home and for a few days you took them then got naltrexone implant that blocked opiates for 30 days.  But, like I said, you really don't sound like you need to the implant, but maybe by googling Gooberman you could find a similar detox.

Let me know.
Avatar universal
I sent a message to my doc @ Kaiser. I am hoping to hear back from her today. I need to make her understand that I want off. She tried to give me Prozac to help with the morning head crap.. Uh - No thank you! I don't want anything that can be used for depression. Once that gets written in your Kaiser file it haunts you forever. I told her I would not take it & she said she wrote the RX for Anxiety & that is all it is for... Then give me Ativan or something that can be used for an immediate result & short term. Not something that takes weeks to get use to.

The doctor I spoke with at the St. Helena Detox center knew exactly how to help me.

I would go this Friday if I had the $3K to spend. I would go Friday & get off Methadone for 48 hrs- After going through 48 hrs of Detoxing I would get on a medicine called Buprenorphine - I had never heard of this. It seemed to me like he could fix me in 4 days. Go in on Friday come home Sunday or Monday.. I think I am ready to do this! But - I need the $ to go in and get it done... And I need to convince myself I will survive 48 hours without Methadone. After 4 hours I feel like I am loosing my mind. I had suicide thoughts. Something that is soooo unlike me. I would never hurt myself but for some reason when I am off the Methadone it's the only thought I keep having... Its so hard to explain. I started questioning my sanity & then decided to take my Methadone. 45 minutes later I was fine again. What the heck... I knew right then that it was the Methadone that was causing me to go all mental.
199177 tn?1490502134
what they are doing is taking you off methadone and putting you on subboxone even doing that you will have tobe drug free for a few days .You can find sub doctors in your area that wont cost you three grand .How long did they want u to take the sub
Avatar universal
ok, if I am not mistaken, the beprenorphine is pretty much suboxone, (I could be wrong, look it up)  That is better than Methadone, but still dangerous and can be hard to get off of.  I don't think you will have much of a prob.  You are not on a high dose of Methadone, and shouldn't be on buprenorphine for long so it shouldn't be an issue, but there is no quick fixes, so look into.  All these places are usually only interested in one thing....

I am going to look up the med real quick.  But, be careful....you don't want to exchange one thing for another and be sure that they know you are not an addicted by choice, that you werent' on Methadone b/c of addiction.  IT does make a difference!
199177 tn?1490502134
krissy no it is it the generic name for sub
Avatar universal
Yes, just as I thought, it's suboxone, do some research and decided if that's what you really want....there is no quick fix....it takes work and if you do it right, there will be some discomfort....look into the detox like the one gooberman uses where you are only on a Opiate-like substance for a few days.  Just to get you through the worst of it....you may be uncomfortable for a few days after that, but at least you won't just be trading Methadone for suboxone.  They usually try to keep people on suboxone for at least 30 days, but then you have to taper off of that.  Just do some research and check it out.  $3 grand is a lot of money!  Especially when you can get suboxone from a licensed Dr. for cheaper.
Avatar universal
sorry, I was posted and never even got a chance to read yours....thanx, i thought it was but wanted to look it up before I gave her the wrong info.
Avatar universal
Feel free to send me a note or a message.  I sometimes take a break from this computer.  (it tends to give me migraines).  and I don't want to miss your post....so feel free to send to me directly if you get no response on this thread....although I try not to forget threads, I am an addict and do tend to forget. LOL  

Avatar universal
You guys are wonderful! I am researching everything as much as I can. I am on the phone with Kaiser member services to see if this is something that Kaiser does do. And if they don't if it is something that will reimburse me for. I doubt that they will, but I have to try.  I really think that this Suboxone stuff could do the trick for me. It seems like it will be hard but not unbearable. With you guys cheering me along I know I could get through it

Thanks again for everything!!!
Avatar universal
Good for you.  Good luck and like I said, please keep me (us) informed...Please feel free to message me.  I am very interested in Suboxone, but b/c I am broke it's just not an option for me yet.  
199177 tn?1490502134
it not just up to your ins lots of sub doctors dont take ins they want they money .So you will also have to find a sub doctor that will let u use your ins if it does pay for it .also I would go at least 72 hours before changing from methadone to sub if they give it to u to early you will go into precipitated WDs which I hear is horrible .You have to make sure u have to get all of the methadone out of your system .
890982 tn?1259094785
My son was on suboxone for methadone addiction.  He took it for 11 months, and after tapering off it (too quickly, I'm convinced) he went back on the meth because he couldn't stand the sub withdrawals.  It's just as addictive as methadone: it is to methadone what methadone was to heroin (and, I believe, as heroin was to opium long ago).

It disturbs me to hear that prescription of an anti-depressant would cause trouble for you (with your employment or your insurance? or both?).  This is medical fascism, there is no other word for it.  It's a violation of doctor-patient confidentiality.
Avatar universal
To make a long story short - When I went in for my Gastric Bypass surgery I had to pass a Psych exam. I passed no problem. However, because I appeared anxious I had to attend group therapy for 9 months... I swore from that day forward that anything having to do with Anxiety or depression or anything mental illness wise   - I would keep away from my Kaiser file.  I was only anxious the day of my appointment because I was scared I would be told I would not be able to get the surgery because I take Methadone. I basically scared myself & made myself anxious. I really wanted the surgery. I managed to cause myself enough anxiety leading up to the date of the appointment that I got my period that morning for the first time in over 2 years... That in and of itself could cause my emotions to go all over the place. So  - The Psych doctor deemed I was sane enough to have surgery but I needed to work through my "anxiety" issues. That was written in my Kaiser chart. Now I am asked "Do you suffer from anxiety" No I don't - I did the day of that appointment & I do when I forget to take my methadone but normally - NO!

I am just scared that I am going to find out that I am psycho or something. I am going to be told that the last 6 years I was on Methadone kept me sane. When I get off I am going to be an emotional & psychological mess.. I know that this is a real possibility... I don't want Kaiser any where near this part of me.  It's hard to explain if you have never been a Kaiser patient. Your file follows you everywhere. Not just the paper file but now they have an electronic file that they can send back & forth to each other. It's a great way to help treat people in the ER... I think it can save lives having a patients entire file at your fingertips. Instantly when you type in their Medical Record Number.

I am hopeful that some how, some way I will overcome this medicine.
Avatar universal
Hi~  I've read this whole thread and your pain and frustration come through loud and clear.    I'm familiar with Kaiser,also.   In my opinion,you shouldn't go on another drug.
It comes with it's own problems. The situation you're in is almost a travesty.Actually,it is a travesty.
Knowing what I know now, I think you should do a nice,long,slow taper. What else is there?  You may find a doctor to help but the doctors generally feel like they have to treat,medicate etc..hang a diagnosis on you (like drug addiction...)

Gnarly_1 has a great bit of experience with a particular way to taper. Send him a personal message and ask him for it.  You'll need support during the taper and I see you have that.  A slow taper,I think,will work for you. You are physically dependant but not an addict,in my opinion.  You want your freedom back and you want new memories.
I can understand...
Please keep posting with your decision/progress. There are so many here to support you.

All the best~
Avatar universal
Thank you all! I went to Kaiser yesterday & spoke with a doc in the Chemical Dependency Department. I have an appointment on 5/24/2010 to see how I can get off the Methadone. I am still hoping for some help getting off. Supporting me helps but not enough to keep me from going insane when I go off. I tried tapering I got down to 1 pill & I could not take the withdrawal symptoms after 2 days. I went back up to 1.5 pills and I have been here for the past 3 months. I can't do that again. I had some of the darkest thoughts come across my mind. Things I know I would never even imagine let alone consider.  Because of this, I feel that Suboxone can help me get off the Methadone.

I am at a point where I am borderline Desperate! I don't want to cross to full blown desperation... Then only God knows what I would be able to handle & or do to get off.

Thank you all again for your words of wisdom. I agree that I am not an addict. However, My body & mind are. I can take alot of pain. The suicide thoughts & the self hate I feel when I am coming off the Methadone are more than I can bare.  I think that I deserve to give myself better care & not allow my mind to hurt me. I am afraid that without Suboxone or something like it I will end up worse off & on a higher dose than I am on now. I want to move forwards not backwards. I hope Kaiser can help
Avatar universal
I hope they can help,as well.  I appreciate your decision.  I understansd.
Let us know how it goes after the appt. (or before!)

Best of luck~
Avatar universal
I will do!!! & Thanks again!
890982 tn?1259094785
I think you are making the  best of a difficult situation, and wish you the best of luck.  I think your fears about insanity (if that is how I can interpret your remarks about the mental side effects of withdrawal) are understandable, but probably not as much of a threat as they seem to you at this point.  Without knowing more about it, I can't be more reassuring than this, but I think someone with a little professional training could be of some help.  

I speak with some experience on this.  Many years ago, in the throes of divorce and other looming disasters, I was afraid I was losing my mental balance entirely, and entered a voluntary ward in a psychiatric hospital.  After two weeks, the head physician told me she thought I was just having "butterflies" and, basically, scaring myself, so they sent me on my way.  After that, being low on funds and living in a college town, I got some counseling from graduate students in clinical psychology, which was also helpful.  It has always seemed to me that I had "hit bottom" during this period, and it was a great relief to discover that there was a way out, and that it was very unlikely that my mind would take me anywhere I couldn't get back from.
228936 tn?1249097848
I think you could get off methadone easier than a lot of other people. First, you sound like your pain issues are under control. Also, you were never a true addict before right? This makes a big difference in craving during withdrawals. And the last thing would be the fact that you quit smoking and haven't looked back. That also speaks to your not being a super addictive type. There are new cutting edge detoxs and protocols that make getting off of drugs like methadone easier and many of them have you on sub for a month or so and using other meds. I think it's mostly a mistake to put methadone people on sub for too long becuae they can get stuck there too. all the best
Avatar universal
never heard of them giving methadone for migraines..im on 2.5 mgs was on 160 mgs 3 yrsa ago long *** tapper..i will be dropping rest soon..i never had thinking issues as you..i had issues from not sleping 4 days..was seeing things and hearing voices in twilight so to speak..

alot of us tapper..but 1 time i thought wtf 20 mgs isint much..i went C,T,..and yes i went threw hell..couldnt sleep more than 3 hrs aday..cold sweats hot cold shaky couldn't eat..if i was you i would be prepared..the dope sick is intense..but you won't die not from opiate wd,s..benzos yes you could..methadone can make u  wished you were dead..but the 1st 9 days 4 me was bad..i was alone witch helped that way..i lost 25 pounds in 30 days also was in deep depression,.,not from the meth.,.im bipolar 1,ocd..the mental part of wd,s is the worst..on my detox from 20 mgs it lasted about 6 monthes..u dont freak out..ur just not all there wile your mind heals..i REMEMBER MY TAPPER IN DEC 09..I WAS TALKING TO SOMEONE ON HERE..IT FEELS AT TIMES LIKE ITS NEVER GOING AWAY BUT EACH DAY IS CLOSER..IF UR SERIOUS ABOUT DROPPING..BEINGS UR ON THIS FOR MIGRAINES YOU MITE HAVE TO TAPPER..ME CT IS THE ONLY WAY..ANYTHING UNDER 5 MGS IS HELL!!!!!!!!!!!!!!!!!!  ANYTHING ABOVE IS DOABLE!!!!!!!!!!!!!  MAIL ME IF U WANT   IM JAMES
13840391 tn?1431710879
I just started methadone.  I suffered a TBI 4 years ago during an assault and developed a brain scar.  I don't respond to any pain meds including morphine and dilahded.  I've spent 3 years in abject misery.  I haven't had a day off from pain in over a year.  I had quit being able to function.  I managed to eat and shower through sheer force of effort.

I've been through every western and eastern treatment up to and including spiritual healers.  I left no stone unturned, even at times even if the effect might have been placebo.

With Torridol off the market, my option became spending a week or so in the hospital for DHE treatment is its own hell.

Nerve blocks, botox, auromatherapy, reflexology, after everything my best friend was oxygen (in case it was a true closer headache--which was rare) and aspirin which could alleviate up to 10 percent of my pain, but could be used only rarely due to bounce back headaches.

I don't know if you can die of unremitting pain, but if you could...it had gotten to be too much.  The pain was starting to drive me mad.

I've only been on methadone for a few weeks.  I don't like the drug.  I never responded to other narcotics at all, might as well have taken a water pill.  This makes me feel a bit weird, but I've had a worse effect from a 2 glasses of wine (years ago when I could drink).

I'm hoping the high effect goes away; however, I haven't spend 24 hours pain free in years.  I was lucky to get a few hours a day with decreased pain from the cefaly device.  Methadone or experimental surgery.  These were my options.

My quality of life has improved greatly.  I went to a store and shopped.  I had lunch with a friend.  It's been years since I have done anything except do everything I can to make a doctors appointment.

Am I a fan of methadone?  Not necessarily.  I am a fan of living.  It wasn't a question of whether or not I was going to spend the day in pain, but if maybe I could function for a few hours a day.

Methadone does not take away the pain, but it controls it.  I'm only 10mg a day.  My doctor says I can stay there.  He would prefer me on 30mgs a day, but says if I can gain any function with 10 he won't argue.

How functional were you?  If you weren't functional at all, perhaps you should solicit some medical opinions, a bunch of them.  I didn't give in to this treatment till I ran through all the world renown headache neuros.  I function 10x better than I did before, this still doesn't mean I'm not in pain, but it is tolerable and I am perpendicular to the ground.

Find a hospital with headache fellows in it and a neauro that only does just the one thing.

If the drug is making you rash, don't be rash.  Your going to have to have something to mediate the pain when you go off the drug.  Cefaly, TENS, and therapy with electrodes are proving worthwhile for many patients who have been untreatable.  FDA has approved only one treatment.  It could give me up to 3 hours a day of functionality, but the treatment itself was painful.  The technology will be there in the next few years.  It is there now, but FDA hasn't approved it and I can't afford 10-20k for the surgical implant of electrodes.  Current clinical study has the 95 percent effective against pain (not just headaches)...you really need a university library to pour through the medical journals.  One that looks promising is one being done by Dr. Bulgar (It's a current one not a past one), and usually the surgery is done by a plastic surgeon.

I don't know if you live in a place where marijuana is rxable.  Marinol (synthetic THC) didn't help me.  One of my neurologists had me try marijuana.  I couldn't stand the high; however, they now have a version that they give children that has almost no THC content, but it works very well.  That drug made me feel like I was going mad, but it wasn't legal in my state so I couldn't get the low THC stuff.  It's off the beaten path, but it works for some.  Aroma therapy would give me 10-20 percent of relief occasionally.  

Just remember, no doctor that is competent would have put you on this as a first choice.  This is usually a last ditch measure.  You need to have a plan in place for treatment when you shift from this to something else.  Even reflexology worked for 3 months before it starting making me violently ill.

This drug may not pan out either after a few months.

Your dose is quite high.  I am sorry.  Try to get the doctors to give you a backup plan besides just going off the medication.  Going back into that much pain...you may not remember how debilitating it was.
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