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Methadone for intractabe CDH

Question:

Maybe I am just confused. Please explain, are these MAO-i meds not to be used with Demerol? In that case, you couldn’t be on these and have to get an emergency Demerol injection either.

True.  However, you can use any other narcotic such as morphine, etc.  Also, some of us realize – Hide quoted text — Show quoted text – that Demerol isn’t a prophylaxis. For some of us however, it is better than no relief at all. If they would try something like Oxycontin or Fentanyl patches, I would be a happy camper, they might work. As it is the only help that I get is Demerol tabs when absolutely necessary and an injecion when that doesn’t work. Believe me if anything else worked, I would be doing that. I have been through at least 30 different meds for prophylaxis including the anti siezure meds. Also, I don’t take it (Demerol) daily and sometimes not even weekly if I can stand it even though I do suffer from Chronic Daily Headaches. I am absolutely positive that they are not rebound ha. I also don’t take OTC meds as they don’t do anything. I use oxygen (I also have clusterlike pain) ice, deep breathing, Tiger balm and an oil from China. I also believe that addiction is not a problem if you are truly in pain. I have no euphoria or high from meds, just relief (sometimes) from pain. Please tell me why I should not use something that (sometimes) works for me.

There is nothing wrong with using something that works for you. Narcotics can be used at the time of acute attacks.  As for the chronic daily headache syndrome – the majority of research supports that these are rebound from pain meds (tylenol, non-steroidals, etc.).  It you are convinced that this is not the case, then additional exploration into the diagnosis needs to be made.  There are reports of people suffering from almost daily headaches related to things from postural problems to undiagnosed anxiety and depression to increased intracranial pressure. A good diagnosis is the key! Donna – Hide quoted text — Show quoted text – Ellen ! EVERYBODY has the monoamine oxidase enzyme – it is the way neurotransmitters are broken down in the body (such as seratonin, norepinephrine, amine precursers, etc.). Antidepressants called monomamine oxidase inhibitors (MAO-i) such as Nardil, Parnate, Marplan, are OFTEN utilized in prophylaxis against migraines.  Just as they work in depression to "re-balance chemicals" they do the same in migraine sufferers to prevent the headaches.  They actually work quite well. — EllenP Headache Free Is My Fantasy

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Where do you find these MAO Inhibitors. I am confused. Are they in foods, other meds? why don’t they ask when they give you a shot? Many doctors now require patients taking MAOI’S wear a medic-alert or ID bracelet indicating current use of Nardil, Parnate, etc.  While

   I recently tried Nardil, and after all the things people (especially Karen) told me on this NG, I did have a MedAlert bracelet made for myself and wore it the whole time I took it. It didn’t help me; my blood pressure was elevated while I took it, even though I was careful about the diet and everything else.  It does help some people, though. Dennis

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KE Are you by chance hitting the wrong button when you post your messages?? This is twice now that 8 identical messages showed up!! Is this happening to anyone else, or maybe an AOL quirk?? Only happens with KE messages Hawki

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Where do you find these MAO Inhibitors. I am confused. Are they in foods, other meds? why don’t they ask when they give you a shot?

Not only should the ER personnel ask you, but patients on mao-inhibitors NEED to TELL them as well!!!!  It is the patients responsibility to inform the healthcare personel of all their meds.  I actually advise my patients to carry an ID card next to their driver’s license informing others that they are on mao-inhibitors, just in case they are unable to communicate. Donna

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Many doctors now require patients taking MAOI’S wear a medic-alert or ID bracelet indicating current use of Nardil, Parnate, etc.  While MAOI’S do provide relief for some people with chronic headaches, they are not without serious side-effects, and should be reserved for patients who have not responded to other drug therapies. I took Nardil for 3 1/2 years, so I am speaking from experience. My 2 cents, Mary

More MAOI experience….. On August 1, 1987 (I remember the date cuase I was due with Josh in three days) my sister arrived from Salt lake not only with her Nardil and some thorazine in case of some strange food reaction and a list of things that were okay for m to feed her, but also bronchitis.  It wasn’t a soxial visit she was there to take care of my other kids for me while I was in the hospital. I listened to her cough for a whole day and night before I decided to play mother hen and take her up and find something to help her with it. We went and asked the pahrmacist who didn’t even bother to check the PDR (boy did I learn a lesson there) waht she could take for her cough. He said without hesitiation Robitussin.  So without questioning his advice we grabbed up the robitussin and headed home.  she took it almost immediately and then started looking super tired not too long after that. She did say it didn’t hurt to breath anymore…. but when me and Marty went to bed we had just got comfortable and I began hearing this thump…thump thumping sound coming out of her room. I got up and went and checked on the kids and when they were fine quietly knocked on her door.  She didn’t answer but the thumping sound was getting worse so I just went in.  She was on the floor in seizures.  I will never forget the way she looked now will Marty (he had to help me remember I was feeling liked a beached whale at that point).  Somebody called 911 I really don’t remember who things started moving so fast. They took her to the trauma center were she remained in critical condition for several hours.  They had a really hard time just stabalizing her, they wouldn’t let me see her (I was pretty freaked out and there is noting the hospital wants to see less than a lady ready to pop freaking out). They finally got her stabalized, I finally convinced the police that she wasn’t trying to kill herself, and they got her into ICU where she stayed for two days. After she got out of ICU she spent another 4 days in the hospital and and it probably should have been more. MAOI’s are dangerous…. I dont’ think I will ever allow anyone to prescribe it for me…but that’s beecause of that one experience.  It worked wonderful for her.. although when she got back home the first thing she did was tellher dr to take her off it she didn’t want to go through that again. Please, if you take them, tell anyone who is going to treat you or advise you on your medications.  And make sure that they check and makke sure it is okay and do your own checking. Karen boy have I learned a lot since then

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Where do you find these MAO Inhibitors. I am confused. Are they in foods, other meds? why don’t they ask when they give you a shot? Not only should the ER personnel ask you, but patients on mao-inhibitors NEED to TELL them as well!!!!  It is the patients responsibility to inform the healthcare personel of all their meds.  I actually advise my patients to carry an ID card next to their driver’s license informing others that they are on mao-inhibitors, just in case they are unable to communicate. Donna

Many doctors now require patients taking MAOI’S wear a medic-alert or ID bracelet indicating current use of Nardil, Parnate, etc.  While MAOI’S do provide relief for some people with chronic headaches, they are not without serious side-effects, and should be reserved for patients who have not responded to other drug therapies. I took Nardil for 3 1/2 years, so I am speaking from experience. My 2 cents, Mary

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MAO inhibitors are a type of antidepressant – i.e. nardil, marplan, parnate. They are prescription drugs.  Not only do they interact with other meds, such as antihistamines,  and foods like alchohol, ther are an "old school" form of antidpressants and I would probably question anyone who prescribed it to me unless I had tried everything else.  Side effects are  hard to get through also (most do pass after a while); like if you are lying down and sit up, you have to do it REALLY slowly or you feel like you are going to pass out!   I am not a pharmacist – I am quoting a 1993 PDR and my first experience with an anti-depressant.

Actually, the information above is outdated.  These medications are very safe if one is educated on how they work and how to use them. Antihistamines are not contraindicated, but ephedrine cold medicines are.  These are extremely effective medications and highly underutlized – for some migraine sufferers, they are a life saver; and for certain forms of depression, they’re the only medications that work!  The side-effects are almost zilch – for the first 24 hours your body adjust to the change in blood pressure (these medications were first invented as antihypertensives).  After that, you don’t even notice your are taking anything.  If you are experiencing negative reactions, it is because the dose is generally too high! Donna

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… Opiods are NOT a prophylaxic (preventative) treatment of migraine.   They are only used in certain chronic pain syndromes.  

How do you distinguish between those who have migraine and those who have "certain chronic pain syndromes"? The doctors who said I had migraines gave me the usual list of med’s, and none of them worked; only opioids give me some amount of relief. Also, using opioids "around the clock" is MUCH better for most chronic pain patients than "as needed" (PRN). All of the latest research shows this to be true, and my experience of over twenty years of using opioids agrees with the latest findings. Once tolerance develops, "around the clock" dosing avoids the roller coaster effect. In episodic pain (such as migraine), they lead to tolerance, irritability, chronic daily headache syndrome, and can actually make one more susceptible to migraine by lowering natural endorphin levels.  

How can you assert that migraine is always "episodic pain"? Many people who read this group have "episodes" that last weeks, months, years! And many people who use opioids would not be alive without them. NOONE suffering from migraines should use opiods daily.  They are a great adjunctive treatment AT THE TIME of the migraine, but doesn’t abort it, just "numbs it".

It’s best not to use opioids if you can find another form of relief, I will agree with that. But once you’ve spent years trying everything else, perhaps wasted tens of thousands of dollars on tests, possibly even had surgery to attempt to relieve the pain, only to find it has just gotten worse, then opioids are a godsend. This is the story of my past twenty-five years: I’ve used opioids daily for over two decades now, and they make an otherwise miserable life somewhat worth living. Do you suggest that I abandon the only thing that works? For those who do benefit from opiods at the time of a migraine, long acting opiods have much less risk for developing dependence.  Short acting agents such as vicodin, lorcet, percodan or percocet, tylenol #3, etc. and barbituates (fiorinal, etc.), have a very high risk of precipitating dependence since they do cause withdrawal and can trigger headaches.   Methadone is a good choice.  So is long acting morphine (MS contin).  You need to find a doctor who knows how to use pain medication and knows how to treat pain patients. …

It has been estimated that over 7000 people take their own lives each year due to untreated or undertreated pain. How many people each year die from opioid dependence? I know of none. I am sorry to see such fear of opioids being spread in a newsgroup read by so many people who get relief from them. How deep can your knowledge of opioids be if you cannot even spell the word correctly?                                                        __ john quill taylor                                     / / writer at large                                      / /   Hewlett-Packard, Storage Systems Division    __     /_/ / Boise, Idaho U.S.A.                         /_/  __ _ Telephone: (208) 396-2328 (MST = GMT – 7)     /    / Snail Mail: Hewlett-Packard                    /             11413 Chinden Blvd                             Boise, Idaho 83714                   _/             Mailstop 852                            _/                                                   _/       "When in doubt, do as doubters do." – jqt –                   china, haiti, rwanda, cuba, bosnia, … we have a list,              where is our schindler?

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Maybe I am just confused. Please explain, are these MAO-i meds not to be used with Demerol? In that case, you couldn’t be on these and have to get an emergency Demerol injection either. Also, some of us realize that Demerol isn’t a prophylaxis. For some of us however, it is better than no relief at all. If they would try something like Oxycontin or Fentanyl patches, I would be a happy camper, they might work. As it is the only help that I get is Demerol tabs when absolutely necessary and an injecion when that doesn’t work. Believe me if anything else worked, I would be doing that. I have been through at least 30 different meds for prophylaxis including the anti siezure meds. Also, I don’t take it (Demerol) daily and sometimes not even weekly if I can stand it even though I do suffer from Chronic Daily Headaches. I am absolutely positive that they are not rebound ha. I also don’t take OTC meds as they don’t do anything. I use oxygen (I also have clusterlike pain) ice, deep breathing, Tiger balm and an oil from China. I also believe that addiction is not a problem if you are truly in pain. I have no euphoria or high from meds, just relief (sometimes) from pain. Please tell me why I should not use something that (sometimes) works for me. Ellen ! EVERYBODY has the monoamine oxidase enzyme – it is the way neurotransmitters are broken down in the body (such as seratonin, norepinephrine, amine precursers, etc.).   Antidepressants called monomamine oxidase inhibitors (MAO-i) such as Nardil, Parnate, Marplan, are OFTEN utilized in prophylaxis against migraines.  Just as they work in depression to "re-balance chemicals" they do the same in migraine sufferers to prevent the headaches.  They actually work quite well.

– EllenP Headache Free Is My Fantasy

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MAO inhibitors are a type of antidepressant – i.e. nardil, marplan, parnate.   They are prescription drugs.  Not only do they interact with other meds, such as antihistamines,  and foods like alchohol, ther are an "old school" form of antidpressants and I would probably question anyone who prescribed it to me unless I had tried everything else.  Side effects are  hard to get through also (most do pass after a while); like if you are lying down and sit up, you have to do it REALLY slowly or you feel like you are going to pass out!   I am not a pharmacist – I am quoting a 1993 PDR and my first experience with an anti-depressant. Good luck. KE – Hide quoted text — Show quoted text – Where do you find these MAO Inhibitors. I am confused. Are they in foods, other meds? why don’t they ask when they give you a shot? Ellen Additional warning.  Demerol + MAO Inhibitors can result in DEATH.  Witness the wrongful death case (can’t remember the girl’s name) that took place in NY state not too very long ago.  I believe her family won the case.  And they only gave her 25 mg of demerol. — Doug Jackson — EllenP Headache Free Is My Fantasy

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Where do you find these MAO Inhibitors. I am confused. Are they in foods, other meds? why don’t they ask when they give you a shot? Ellen Additional warning.  Demerol + MAO Inhibitors can result in DEATH.  Witness the wrongful death case (can’t remember the girl’s name) that took place in NY state not too very long ago.  I believe her family won the case.  And they only gave her 25 mg of demerol. — Doug Jackson

– EllenP Headache Free Is My Fantasy

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can result in DEATH.  Witness the wrongful death case (can’t remember the girl’s name) that took place in NY state not too very long ago.  I believe her family won the case.  And they only gave her 25 mg of demerol. — Doug Jackson

Hi- That was Libby Zion who was given 25 mg. of Demerol while she was taking Nardil (an MAO inhibitor).  NY State subequently limited the number of hours an intern can work because of this case.  Her father was a journalist. Big mistake! Jack Sandweiss Research Associate California Medical Clinic for Headache Encino, CA

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Additional warning.  Demerol + MAO Inhibitors can result in DEATH.  Witness the wrongful death case (can’t remember the girl’s name) that took place in NY state not too very long ago.  I believe her family won the case.  And they only gave her 25 mg of demerol. — Doug Jackson

I can attest to the dangers of taking MAOI (Nardil) and Demerol at the same time.  Fortunately, I am still here to talk about it, but that is only due to my stomach "rejecting" the Demerol pills I took. My doctor at the time, failed to mention it’s not a good idea to combine the two.  Live and learn. Mary

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Additional warning.  Demerol + MAO Inhibitors can result in DEATH.  Witness the wrongful death case (can’t remember the girl’s name) that took place in NY state not too very long ago.  I believe her family won the case.  And they only gave her 25 mg of demerol. — Doug Jackson

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I read a report about Demorol (meperidine) being used for migraine, as well as fentanyl.  Both of these drugs require monoamine oxidase to be cleared from the body;  MAO is an enzyme that many migraineurs cannot manufacture or utilize for some reason.  Be wary of using any drug that would interfere with a monoamine oxidase inhibitor (MAOI)–for SOME people, these can create a migraine instead of temper the pain!  As a reference for yourself, read the general statements about MAOIs in the AHFS manual (like the PDR, only better).  If the listed foods and drugs give you problems (caffeine, red wine, strong cheeses, stimulants, decongestants, etc.), talk seriously with your doctor about using Demerol.  I agree with the author of the original post about opioids being useful for headaches, but not a good way to live;  if you have to get  off them for some reason, withdrawl sucks, and you still have headaches.  I’ve been there, and I can’t get methadone, even though I almost died from such severe chronic pain that I couldn’t eat anything, and doctors in the hospital thought I was just trying to get drugs–how many of us have been there?   In my state (NC), you have to be a registered drug abuser to get methadone, you have to go to the clinic every day for the dose until you can prove that you aren’t going to sell it, and then you only get enough for 2 or 3 days.  For the most part, they try to taper you off methadone over a month or two–it is very, very hard to get methadone for ongoing treatment here.  Perhaps other states are more liberal;  I would like to hear some feedback on this from other people.  I took Lorcet 10/650 for 1 1/2 years, and had more energy and was at least free from pain for a few hours every day–my doctor just won’t prescribe it any more, as she fears that she will get her license taken away for dope peddling.  That drug made me feel like I was "normal";  I have had severe hemiplegic migraines for 3 1/2 years now after being bitten by a brown recluse spider and have had to go on disability because of it.  I’m only 35.  If anyone knows of some way to get the drugs that can help us (opioids), please share that info.  I live in constant pain with no hope of relief.  I can’t tolerate Imitrex, TCAs, SSRIs, or any of the regular migraine treatments.  Beta blockers have done the most for me, but I can’t even tolerate aspirin anymore (tartrazine).  If anyone has suggestions, I am open to hearing them. April

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than most of the other opioids.  I’m surprised dilaudid didn’t work for you; it’s more potent than demerol.  

My experience is that the 2mg dilaudid was fairly worthless, no more effective than Percocet and certainly no longer lasting which is what I was trying for.  Methadone seems to be working (better) for me gives reasonable relief for all but the worst headaches, and, generally, doesn’t seem to knock me out. Jack – Hide quoted text — Show quoted text -John Draeger

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Embarassedly, I must ask what does cdh stand for?

No need to be embarassed about anything.  CDH=Chronic Daily Headache. This category is one described by various headache experts, referring to any type of headache that occurs on a daily basis.  These are usually continuous, but need not be.  For example, chronic cluster headaches can be included in the CDH category.  Some people also have tension-type or migraine headaches at certain times every day. Your post interested me as i hadn’t heard of the medicine OxyContin, nor heard of methadone being used for h/a pain. Is it easily prescribed? In my search for a decent neurologist wh didn’t think I was a drug addict faking pain,& I’ve encountered some real bastards in ER’s particularly. … I’ve had all the drugs standardly used-ergots in all forms,DHE(SP?something like that given by IV),sansert(even while on sumitriptan-can I trust my

doctor?),tylenol#3,fiorinal,fiorocet,dilaudid,etc.They’d fill a page & never helped. Nor did P.tx,nerve blocks-nothing!!!I’m extremely thin-fight nausea to keep my wt. up to 85lbs(5′) & HATE the nausea-so many fun times are awful because of the headches. Any comments would be appreciated. i’ve tried to get a dr. to prescribe demerol injections to no avail,of course……

First you should try the inpatient IV DHE treatment that I’m about to undergo.  If that is ineffective or last for only a short period of time, you might think about finding a doctor who will prescribe opioids on a long-term basis.  It’s not a great way too live–being on opioids for the rest of your life–but, for some it’s the only way.  You absolutely do NOT want to take a lot of Demerol.  It’s notorious for only lasting a short period of time and you need a lot of mg. to do the job.  If opioids are the only thing which works and your headache pain is continuous, you need a controlled release strong opioid.  The current choices are fentanyl patches, MS-Contin, methadone, OxyContin, or perhaps levorphanol. OxyContin and methadone are the most current choices I believe.  Methadone is only prescibed for people who cannot live without it and everything else makes them sick, I think.  Methadone has a lower potential for emesis than most of the other opioids.  I’m surprised dilaudid didn’t work for you; it’s more potent than demerol.  But for some reason meperidine (Demerol) works especially good for headaches.  Maybe it’s the calming effect it produces.  Vistaril, which is injectied along with the Demerol potentiates the effects of Demerol–this could also account for some the Demerol’s effectiveness with headaches. It’s not uncommon to use both Sansert and Imitrex at the same time. John Draeger

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On second reading of your post I realized that what I wrote wasn’t too responsive to your post-I’m new to the group & jumped to post when I read of a person having found some relief from pain & nausea,longterm,I hope, What helped? Perhaps the Stadol might help you-it’s also horrendous in cost-between 59 &88$ depending on the pharmacy. My ins. covers it with an affordable co-payment.I’ve thought that switching from the Stadol(butorphanol) to something like Oxycontin might help with the problem of tolerance, I do hope some kind,smart doc who knows severe h/a’s firsthand responds to your post-good luck!

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Dear John, I’ll be introducing myself to the newsgroup in another post. Embarassedly I must ask what does cdh stand for?I’ve read a great deal about all kinds of h/a’s,mainly because I seem to have every variant,not an uncommon situation,nevertheless,one which seems to be the worst factor of my existence. I thought "Chronic debilitating h/a" or" cluster h/a". Anyway, I’m writing to you because in my 45 yrs.,43 of which have included severe h/a’s,the only relief I’ve had has been from demerol,combined with an anti-emetic(usually vistaril)…excepting a recent phase of success with sumitriptan injections,which aren’t working as well as they did the first 2 yrs. Also, I’ve read a lot of bad press about their increasing stroke & heart attack proclivity,both of which run in my family on both sides. I won’t go into my longterm h/a history-suffice it to say that I was put in a psych ward as a result of going to the ER too often,given no meds during that time during which I was indeed dysfunctional from the severity of the pain & nausea. I am now taking an inhalant called Stadol(a synthetic narcotic)which,unfortunately I’ve become tolerant to-if  stop it for a while it helps again by putting me to sleep-sleep seems to me to be what breaks my pain-,sumitriptan shots 2x/day,& Midrin. This combo worked for a while but isn’t any longer, & the unpredictable attacks plus the accompanying nausea are making me feel very worried about what I,a trained professional, can do to function well enough to make a living & enjoy some of my h/a- free time. Your post interested me as i hadn’t heard of the medicine OxyContin, nor heard of methadone being used for h/a pain. Is it easily prescribed? In my search for a decent neurologist wh didn’t think I was a drug addict faking pain,& I’ve encountered some real bastards in ER’s particularly. I’ve had all the drugs standardly used-ergots in all forms,DHE(SP?something like that given by IV),sansert(even while on sumitriptan-can I trust my doctor?),tylenol#3,fiorinal,fiorocet,dilaudid,etc.They’d fill a page & never helped. Nor did P.tx,nerve blocks-nothing!!!I’m extremely thin-fight nausea to keep my wt. up to 85lbs(5′) & HATE the nausea-so many fun times are awful because of the headches. Any comments would be appreciated. i’ve tried to get a dr. to prescribe demerol injections to no avail,of course……

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I’ve been posting about long-term opioid use for the treatment of symptoms of CDH.  I’m posting so much because I finally have the energy due to adequate pain and nausea relief. I’ve mentioned OxyContin, MS-Contin, fentanyl patches (Duragesic) and methadone as possible options.  I don’t here of too many people havint success with fentanyl, and it didn’t work for me because it made me nauseated and dizzy at a less than therapeutic dosage.  This problem seems to be common with headache sufferers, who also often have a predisposition for motion sickness.  Also, since headache pain tends to wax and wane, patches do not allow for an increase in pain control with an exacerbation of pain–one has to wait hours and by that time the pain may have gone down and then you’d be receiving too much analgesic.  I also had problems with skin irritation under the patch, which could lead to too much fentanyl being released into the bloodstream through inflammed vessels near the surface under the patch. Also, for those of you considering which option to choose, you might not have success with Oxycontin if your headaches are especially severe all the time.  Though oxycodone is not as strong an opioid agonist as morphine (I think), it has the same comparative pharmacology as morphine in terms of analgesia, constipation, sedation, emesis, and physical dependence. Methadone is just a strong an opioid receptor agonist as morphine, and yet it has less sedation, emesis, and physical dependence associated with it. This makes methadone probably the best choice for long-term opioid therapy for CDH.  I’m getting this data from a book called Drug Facts I think. It’s a big book in the referance section of medical libraries.  I’m interested in anyone’s comments, especially doctors who might be treating CDH patients with methadone.  Have you seen better results than with MS-Contin?  One thing I do know is that almost knowone is getting OxyContin where I live because of it’s cost.  What are the comparative costs of these drugs?  Is this in the PDR?  I’ve never looked. John Draeger

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