People trapped inside of medication bottles

Stop Telling Me I Have Medication Overuse Headache

Here’s a confession many people with migraine won’t make publicly: I took two Amerge (naratriptan) and four Midrin every day for 16 months. My headache specialist was aware that I was doing this. Although he prefers I not take acute medication so frequently, he recognized that it was the only way I could function. We monitored my symptoms closely and about a year into my increased frequency of medication use, he noted that my symptoms were worsening in a way that’s consistent with medication overuse headache (MOH). But he didn’t push me to stop the medication.

Being shamed by my new headache specialist

Then an insurance change required that I see a different headache specialist. She zeroed in on MOH immediately. She wouldn’t listen to my explanation and didn’t seem to believe that my other headache specialist was supervising my treatment. I felt blamed and shamed. I left the appointment frustrated and angry.

Of course I knew that taking acute meds as frequently as I did can lead to MOH. But what else was I supposed to do? I have a migraine attack every time I eat or drink anything other than water. I can’t not eat (though I have considered it).

Could acute migraine medication be making things worse?

Despite my anger and defensiveness, the “what ifs” began creeping in after I saw the new headache specialist. A ketogenic diet and the gammaCore, which I’d just begun using, were both somewhat effective. Yet both seemed to become less effective over time. What if I was losing ground with the treatments because I was sinking deeper and deeper into MOH? Would detoxing make the treatments more effective? Was my acute medication use making migraine harder to treat?

I couldn’t stand not knowing the answers to those questions. Since detoxing from my acute meds was the only way to get the information, I did it. Within two days, I noticed progress. After a week off the meds, the improvement was so remarkable that I danced around the kitchen with tears of joy streaming down my face. I felt free.

I had answers to my questions.

Detoxing helped my medication overuse headache

Yes, I lost ground with my other treatments because I was in MOH.

Yes, my treatments became more effective after detoxing from the acute meds.

Yes, my acute medication was making migraine harder to treat and, quite possibly, causing the preventives I tried to be ineffective.

Before I detoxed, I was sure that I didn’t have MOH. I was sure that I was using my medications responsibly. I was sure I would notice if I developed MOH. I was wrong on all three counts.

I was wrong, I am suceptible to MOH

I had medication overuse headache.

I thought I needed my acute meds. And I did, but only because my overuse made physically dependent on them.

My year of vehement denial that I had MOH left me more than a little embarrassed. Having fewer, less severe migraine attacks is such a reward that I’m able to swallow my pride and admit it: I am susceptible to MOH. I know because I developed it.

It’s a good thing my doctors didn’t stop telling me I have medication overuse headache.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (52)
  • LJSF
    2 weeks ago

    Hi Kerrie,
    Your story is similar to mine, however, I was overusing Meds since back in the 80’s when options were few and far between. I will now admit, that I would wake up and swallow a handful of Fioricet before I could start my day. And I took more during the day. Then came tryptans, oh and yes, I was on every preventive known to man.
    Now, in my early 60’s, the suffering became even worse as did my medical problems. I added fibromyalgia, arthritis and other pain issues.
    It wasn’t until I went to a particularly nasty specialist that I was told I would not get better if I didn’t stop the tryptans as well as any otcs and coffee!
    I did succeed in stopping the tryptans ( for a while) with good results. Unfortunately, he put me on Trokendi at a high dose, which nearly cost me my life. I ended up in the hospital for 3 days. Bye nasty doc!
    Now, I do my best to minimize my use of tryptans.
    As far as makeup, I love it too! But hate the big stores. I do buy online from Clinique. I know it won’t hurt my sensitive skin. And once you sign up there are some good perks. There are some things I grab at the pharmacy too.
    I think we change over the years, that is why we could tolerate things like malls when we were young.
    Take care and good luck. Do your best.
    Sincerely, Linda

  • LJSF
    2 weeks ago

    I don’t know how I forgot to mention, I am also now on one of the new migraine medicine, Ajovy. It is quite helpful. Headaches that might have lasted all day, go away instead. I may go to my dark place
    but I don’t spend the whole day there. Great improvement!

  • EKW712
    3 weeks ago

    Very interesting article, thanks! I wonder about those of us in the middle ground between the official recommendation of 2 times per week and daily use. During an episode, I easily overuse my rescue meds, but then can go a week without any meds. So could this be MOH?

  • Selena Marie Wilson
    3 weeks ago

    Preventives are not among any of the lists I’ve found of medications that can cause MOH. But that doesn’t mean headache can’t be a side effect or adverse reaction.

    Here are some links for more info on MOH and the meds that may cause it:

    http://practicalneurology.com/2018/02/medication-overuse-headache/

    https://americanmigrainefoundation.org/resource-library/medication-overuse-headache-2/

    Also bear in mind that many OTCs (such as cold medications and pain relievers) have ingredients that are also in prescription meds, and that taking them together can bump you into MOH territory even if you aren’t taking your migraine meds excessively, and they can also interact in a lot of potentially nasty ways, and so can vitamins/supplements.

  • Selena Marie Wilson
    3 weeks ago

    In response to @josephinestar

  • ba06
    3 weeks ago

    We need an article on the studies that created the rebound / MOH standards. The ‘no more than two doses per week’ were done initially using drugs like aspirin or Tylenol – not the current generation of migraine medications. The results also distributed over a standard bell curve: the majority of participants got more headaches if they took more than two doses per week; some got less if they took more than two doses; and, some had no increase in headaches no matter how many doses they took.

    The community, and more importantly, the insurance companies seized on the two doses per week limit. Even with some back of the envelope math, given the millions of migraine sufferers world-wide, there are hundreds of thousands of us who fall into the category of ‘had no increase in headaches no matter how many doses they took’.

    I participated in one of these early MOH studies; I was an outlier whose headaches did not change. I’ve also had an individualized trial where I took Frova as a daily preventative and it was the only time in 33-years I was migraine free. Unfortunately, once the trail ended, my insurance company would not pay for more than two doses per week based on the MOH studies.

    We need to examine the science behind the restraints put on us by the insurance and medical communities since we’re the ones who ultimately benefit or suffer from them.

  • Darwin's Knickers
    3 weeks ago

    Am I the only one who can tell the difference between migraine and rebound headache? My acute medication is opioid so that may make a difference. My rebound has a specific pain that is way less than Migraine and way different. When I have rebound headache it eases the transition to take half the opioid dose. This makes the rebound headache less and also decreases the risk of triggering a migraine. When questioned about the rebound the doctors take a bit of convincing but they eventually get it. Also my method of taking a 1/2 dose is frowned upon by medical personnel who have no personal experience with successfully beating the rebound affect but they come around if they are any good.

  • Delilah
    3 weeks ago

    I have been a sufferer of migraines for more years than I’d like to admit. I guess that’s because in my younger years I went along with the guilt that it was either female or psycho somatic I should’ve known better my mother was a head nurse in a major cancer hospital of three floors and she did not poo poo migraines. In any case after the doctors got their marching orders from the federal government and they stopped all opioids and benzodiazepanes out right which is a no-no but it put me through a spiral where I learned a hell of a lot my first reaction was my teeth started cracking and my mouth was all misaligned and I could not understand where that came from then I found out I had burning mouth syndrome which caused everything I ate to be distasteful ulcerations on my tongue cheeks in your cheeks a lot of pain what could this possibly have to do with migraines well nothing according to some of these doctors but in short let me tell you how this all ties together if you are a migraine sufferer and especially female you could be living in Victorian England you have vapors but In all seriousness migraines tied into several things neuropathy autoimmune problems hormonal problems And last but certainly not least GERD that’s what caused the problem of my mouth was the constant acidic gas mixture. Because they’re so scared of the government and losing their licenses they don’t practice medicine they practice attrition in any case through my 35+ years of developing migraines and having horrendous ones Other results came out insomnia complete total insomnia. Being pulled off the benzo’s created such a tremor in my body I could not drive I could not write I could not do anything. This is a background to put into context this Guilt we have for using drugs! I know that I don’t want to spend the rest of my life in pain or incapacitated if there are drugs out there that work and the older ones work much better for me than the new ones they don’t work at all then I want to take them I need to sleep I don’t function without sleep and I don’t feel guilty about this anymore I’m not playing doctors off each other it’s impossible in this day and age they all get the same information and I won’t buy from the streets cause I don’t wish to be poisoned. I literally had a doctor for 15 years or so who I thought was also a friend divorce me over this issue he was so paranoid I was really taken aback in any case they want me to be treated by specialist in different fields ear nose and throat dermatology thyroid specialists etc. I hope you’re getting the picture of a GP or internist should handle the whole deal and he should have freedom in what medications he prescribes. We need once and for all to get over our guilt for taking drugs because most people don’t get the kind of pain we do with these migraines. If we are abnormal it’s because of this disease not our affinity for drugs I know personally that I never get high from any of them I’m fortunate if I get some sort of relief.

  • deedeevee1
    3 weeks ago

    That’s great that it helped. But just because you detoxed off all your meds does not mean it definitely was moh. Maybe it was a combination of the meds or an allergy to a medication. Either way I’m glad you’re doing better. Anything that gets results right??

  • Kerrie Smyres moderator author
    3 weeks ago

    Good point, deedeevee1. It was definitely MOH for me. I have taken those meds alone and in combination for years with no problem. And my reaction to taking the acute meds again six weeks after I detoxed erased any doubt—I did fine with the first two doses, then much worse after the third dose I took in a 10-day period.

    Take care,
    Kerrie

  • drewski
    3 weeks ago

    When people start taking medications any way they want,they can have negative effects. This is why medications like this are prescribed, because people have to learn how to take them.

  • Kerrie Smyres moderator author
    3 weeks ago

    Hi drewskik, I did have my doctor’s consent and support when I was using the medications so often. He knew how frequently I was taking them and supported my decision. Until I clearly started to get worse from them.

    Take care,
    Kerrie

  • Darwin's Knickers
    3 weeks ago

    After 40 years of this I am more of an expert on my medications ant their affect on my body than anyone. However I have a great doctor who balances my brain fog with slow steady changes. Your comment put a fear into me. Your suggestion was that a doctor knows the interaction between medication and your body. Rest assured the doctor only knows the very basics. This basic knowledge is based on the subjective study done by the drug company to maximize profit. it is called a “baseline”. it is the formula every doctor makes their dosage decision on. This baseline is made at the beginning of the drug’s creation and is based on average (white middle aged men and women with no other health issues usually homogeneous). Once a drug has reached it’s financial peak the drug companies begin a smear campaign (because the pills go from $100.00 a pill to maybe $5.00). They would rather you take their NEW DRUG (for pain it is currently psychiatric medication). At this point the FDA (prompted by “citizen groups”) begins to talk about addiction. The news picks it up, TV shows are made about the dangers of taking a 5mg hydrocodone and the rest is history. Doctors begin to pick up opioid addiction on their radar from conferences and papers. Our consciousness actually shift from helping people with pain to demonizing them. Meanwhile out of fear and FDA compliance the doctors begin to second guess all opioid treatment and insert weak and noneffective
    “alternatives”. There is so many factors to what a doctor is told to prescribe. To trust your doctor blindly is as bad a mistake as trusting yourself blindly. This is a marathon not a sprint. Oversimplification and shaming are spokes int he wheel.

  • mjva
    3 weeks ago

    Just shows were are all different, and react differently. 8 years ago I finally heeded the call and went in for Codeine detox. Supposed to take 5 days in hospital, they kept me in for 9 … I have not touched Codeine since, but saw absolutely no improvement. Lats year I again gave into the sirens of MOH and gave up on acetaminophen (paracetamol) … guess what : zero improvement. I am now seriously considering Codeine again. I have 2 migraine attacks per day and am gobbling down 2 to 4 sumatriptans (Imitrex) every day.

  • squeak62
    3 weeks ago

    glad it worked out for you. xoxo

  • Thiarnain
    3 weeks ago

    Hi Kerrie,
    congrats on your success! I’m in the same boat although I haven’t reached the aspired destination you have. As a patient in a special migraine clinic about 18 months ago, the first step was to detox for about a week while doing PT, meditations and other fitness activities. My presumed medication overuse was reduced from 28 migraine attacks a month (sometimes 2 a day) to about 15-18 during a 3 weeks stay. I also suffered from rebound headaches and I believed it and went thru the program.
    The first week without meds was pure torture. I left hopeful and somewhat better. However, the attacks increased again after 6 months in spite of me trying to keep with the program at home.
    Now I’m back to square one. The new meds, Aimovig and Ajovy, are not working for me and leave me somewhat frustrated. I’m now having an attack each day again in spite of the new wonder drugs.
    I don’t want to rain on your or anybody’s parade, I’m just exhausted. I had sooo hoped to get relief from the new drugs but I have to soldier on with one or sometimes two triptans a day.
    After all, as one of the clinic’s doctors told me, I have survived the world’s average life expectancy that is 28 years. So what am I complaining about? Quality of life? one may ask. Yes, I’m way older but I had this for the past 12 years on an almost daily basis and since I was 16. I had to give up work because of pain, yet I soldier on in hope.
    To quote a famous German philosopher: Hope dies last. Or …we all live in hope.
    Wishing you ongoing success!

  • laurianne729
    1 week ago

    Hi Thiarnian, I just wanted to say that if the average life expectancy is 28 years someone needs to recheck their stats. So many of the people on this site have been migraineurs longer than that. I, myself, have had classic migraines since early childhood and developed severe chronic basilar artery migraines at 45. I’m now 68 and have no intention of dying anytime soon. I’ve been to a special migraine clinic where I learned the importance of diet, rest etc. I also have done much research on my own and always take magnesium oxide and Riboflavin supplements in addition to the prophylaxis medications prescribed by neurologist and the pain medications as needed as prescribed by my pain specialist. It’s a tough road to follow but I’m alive and plan on staying that way.
    Good luck and God bless you.

  • sootymay
    3 weeks ago

    I am having the medication overuse pushed on me at the moment for the codeine.

    doing sums with scripts and how many I take about 160 tablets (that’s the high ball figure because I don’t take 40 mersyndol forte tablets in a 2 month period, more like. 8-10 a month).

    I go through 120 30mg codeine in 2 months, that’s an average of about 2 a day. . . the mersyndol pushes me near 3 a day.

    so every 2 days I am hitting the maximum dose for one day…. i go daaaays between not taking any to then getting a doozy and needing to reach for it. I hold off on the mersyndol until weekends if I can, at all. because it knocks me out.

    Now I am being told that codeine doesn’t help headaches at all “according to the research” – but it’s more because of rebound headaches. which, my headaches don’t appear to rebound, they just continue on and on and on from the migraine.

    I am SOOO glad this all worked out for you though, and that you can eat the humble pie. I am simply exhausted because after 8 years of trying this that and the other, nothing alleviates me without giving horrible side affects for minimal relief.

  • Selena Marie Wilson
    3 weeks ago

    I sometimes feel as if it’s harder for advocates to admit that we fell prey to something that we advise others to avoid – we know the potential pitfalls, we research and write about them, after all.

    And then if we stumble into one, we feel so stupid.
    How could we not see it? How did we not recognize what was happening sooner?

    Does this make me a hypocrite or just an idiot?

    No. It makes you human.
    And that human was operating under a great deal of pain, and likely fuzzy thinking and desperation.
    When all we can think of is “stop the pain,” we are not going to be objective about it. We may believe that we are being rational, but it’s not even possible to be objective about it when pain is a storm raging in your brain.

    I’m sorry you went through this – I had MOH about 6 years ago, and it was unbelievably brutal. I had to refrain from my rescue meds and any OTC pain meds for two months, partly because the pain meds had also been eating away at my stomach lining.

    Kudos to you for being able to share this publicly. You are definitely badass.

  • aliceann54
    3 weeks ago

    Question – was your detox inpatient? Did you receive any treatments besides the anti-nausea and GammaCore? How often can you use the gammacore?

    How long did the detox take?

    Thanks!

  • Vickstir
    3 weeks ago

    I agree about everybody’s so different. I tried to pre-empt my headache by taking 400 mg ibuprofen twice a day. Yeah, that actually was really helping until the end of the 3d day, I’d just taken it and laid down to take a nap. I got up after an hour and almost fell over. Very lightheaded. After looking it up, mayo clinic lists that as being indicative of overdose of it. I hate that my body is so weird – botox made everything worse and took over a year to wear off, for instance. Not the ‘normal’ – which makes me very hesitant to try the aimovig.

  • ix3jvy
    3 weeks ago

    Can MOH be caused by preventatives, and what do we do when preventatives are plainly making them more severe and frequent. I’ve struggled with this, as I’ve been told the body needs to get used to the preventatives drug. Do you listen to your body and not assume the risk, or do you ignore your body and take the risk of further harm? I’ve definitely had sensitivities to vitamin b2 making them more frequent and severe. Topamax at the lowest dose had me bedridden for days. Propananlol had me wanting to end it all because pain was so bad. What do we do? How do we handle it, how do we balance and when is to much medication enough. The fear of MOH IS ON OUR MINDS ALWAYS. What is the guideline how do we balance? What is to much, what is not enough?

  • josephinestar
    3 weeks ago

    I hear you sister…. I am about to start my second detox next week. My first was 5 years ago and was a revelation to me after 30 years of migraine suffering… but I have had some other physical issues load up on me and I have slipped into over use and here I am again so I discussed with my Neuro who is a goddess, to undergo this one at home (last one was in hospital on a drip, yuck) and reboot the system. I am actually looking forward to it even though the ride will be rough I am sure. there is absolutely no doubt these wonder drugs cause MOH … they give us our life back but they are very sneaky. We get warned off Codeine and codeine based painkillers so we know not to touch them because of rebound headaches but really our meds do the same thing just more slowly and subtly. Well done you and enjoy your life.

  • libra71
    3 weeks ago

    I’m due to start those amivog injections soon and to be totally honest I’m very scared. I’m a 47 yr old woman who has migraines for over 20 years now and for me this could me final chance for some normal life. I have tried every drug you imagine and have been unable to work for over eight years now. Spend half life in bed due to pain thats so bad at times I can pass out. I have no quality of life to speak of and my migraine and neurologist both want me to try is injection. Having said that I live in Ireland and I there are only two hospitals that have just started this trial so very little i is known here so everything I have read is all on American websites or forums etc.. But a lot of people are saying that there are all awfull side effects so I am wary but want to give it a try at the same time. The main hospital is Dublin but I go Cork in Ireland and am only one of a select few starting this trial. I have to loads of blood work and tests first but am due to start soon… Any advice or anybody living in Ireland who actually did the trial??

  • DonnaMLM
    3 weeks ago

    I understand your fear at starting a new drug. However, I have taken. aimovig for 4 months without any side effects. My migraines have decreased from every day/ every other day down to every 4 or 5 days. It’s definitely worth a try.

  • Susie
    3 weeks ago

    I tried Aimovig for 4 months straight. No side effects and no change in my chronic migraines. I tried Ajovy and I have had a slight decrease in the number of migraines I have. It’s worth a try!

  • chronic
    3 weeks ago

    I had same journey. My migraines still get intractable but it happens less & pain is less intense. So that in turn helps other Rx work better.

  • Ruth
    3 weeks ago

    Shaggy78–I feel so badly for you, partly because I could have written your words myself! I think you had a couple more procedures than I did, but everything else, except our ages is almost identical. I can honestly say I tried everything before I was resigned to pain management with opioids, which was the only thing that worked.

    Until there is serious research devoted to the effective treatment of pain, things won’t change much. And unless there is a payoff for big pharma, there probably won’t be any research. So I really hope this gets published. People need to know the truth, and the truth is 1-there is nothing else for managing severe chronic pain for millions of people, 2-we didn’t do this to ourselves, and 3-people deserve effective pain management (with respect!) We don’t deserve to have our lives ripped away from us because some criminals in some other countries are banking on the despair of the world.

  • rlc25e
    3 weeks ago

    I am do super careful not to over take any of my rescue meds because the moh is so bad. And honestly all my rescue meds really knock me out so unless I’m ready to be non-functional it doesn’t do much good. It’s not like a can take a torodal injection and drive my kids to their practices. My pharmacy is always trying to refill my meds before I’m ready

  • bluesguy
    3 weeks ago

    Thank you for writing such an open and vulnerable article. My migraines began after multiple eye surgeries (8). A retinal surgery (in 2005) brought on non stop migraines. I have tried TCAs, Beta Blockers, anti seizure meds, and none worked. I have had multiple botox injections, nerve blocks, and steroid injections. I finally had to give up my career in 2009. If I did not have access to Triptans, Opioids, muscle relaxers, and the like, I would completely unable to function, due to debilitating chronic pain. I think every patient should be treated as an individual. What may work for one, will likely not work for many.

  • carolelynn
    3 weeks ago

    I had a different experience. I had been concerned about MOH years ago because I (sometimes) was taking Fioricet several times a week and heard that could cause rebound headaches. My main doctor at that time (a renowned rheumatologist) told me that he didn’t think I had that and not to worry about it at all. That was years ago.

    Well, in the last year, up to around July when I started Aimovig, I was taking Fioricet almost every day, sometimes 2 or 3.

    With my first dose of Aimovig my headaches disappeared and I didn’t take another Fioricet – not even a Tylenol that whole month. My headaches were gone.

    Unfortunately the Aimovig caused major, acute GI issues problems so I had to stop. (AARRGH)

    Aaaand, I’m back on the Fioricet.

    So I don’t think I have MOH because when I first injected the Aimovig – my migraines disappeared without any other meds. I have also had periods when I don’t need Fiorinal for weeks at a time but that’s admittedly rare.

    I don’t know if that necessarily means that MOH was a factor for me but I wanted to share my experience.

  • nece
    3 weeks ago

    Thanks for writing this. I, too have been taking fioricet for migraine and have had the primary doctor say it was MOH. I find it hard to believe as I use 1 month worth of the meds in a 2 to 2.5 month period of time. But I went to the neurologist for review and we are going to try botox soon. Wish me luck. I was on topiramate for a couple of years and they were heaven as I realized I wasn’t in pain! Then the visual disturbances started so it was back to fioricet. Hopefully the injections will help and not hinder.

  • carolelynn
    2 weeks ago

    Best of luck nece! I have been on the Botox protocol for around 5 years and it helped me a lot, especially at the beginning.

    My only word of caution is that first time you get the shots, ask your neurologist if he/she thinks it’s a good idea to go light on the shots by your lower neck and shoulders – the first time I got mine I was a bobble-head for a few weeks. Everyone is different but I know it takes a few treatments to figure out what dosage works best for you.

    Again, good luck.

  • carolelynn
    3 weeks ago

    Meant to say, I don’t know if that necessarily means the MOH was NOT a factor.

  • Colleen Meegan
    3 weeks ago

    Sadly, there are way too many healthcare providers that play the shame game. I just had a total hip replacement and the provider said, “Our goal is to get you off pain meds. ” I said, “and my goal is to have adequate post-op pain management.” She won, which means my post-operative course was heinous. Then again, I suspect she believes she saved someone down the street from a heroin overdose.

  • Kim DH
    4 weeks ago

    I just went through this myself.
    I’d started Aimovig in early December but it was having absolutely no impact. I’ve been taking Almotriptan and two Tylenol Ultra pretty much every day for many, many months.
    After moving back to Canada after years in Europe, I got a new neurologist who didn’t immediately ask about my drug use even when I told him I was having upwards of 25 migraines per month. When I told him my pharmacist was on my case for buying too many Almotriptan, he finally addressed the issue. First he told me I’d have to cut back, but–really–how do you do that and function? Then, he suggested I go cold turkey; done that once and will never do that again. Then, he prescribed Prednisone once a day for five days and–HALLELUIA!–my life was transformed.
    Those five days were heavenly and in the month since, I’ve had a few hours of very minor pain every day, but most of the time I can ignore it and it goes away. If it doesn’t, a couple of Tylenol do the trick!
    My MOH was preventing Aimovig from doing its thing!
    The moral of the story: address your MOH first, before giving up on other treatments.

  • josephinestar
    3 weeks ago

    Hi … I have done the Aimovig trial and of course it didnt work but for the reasons you have stated I believe. We (my neuro and I ) should have waited til I had done the voluntary detox I am going to do next week at home… bit like what you describe but she has got me sorted with some buffers. I hope I will get through ok but need to get off 25 plus rescue doses a month I take. Nothing else can work when one lives like that. So glad you are travelling well now.

  • Shaggy78
    4 weeks ago

    My experience has been the COMPLETE opposite. Opioids are the only treatment that has provided me any relief from my chronic migraines. I have been off and on opiod treatment for a decade now at the ripe age of 50. I am always told that opioids don’t help chronic pain but for me Opana has been the only medication that allows me to be 100% pain free for 4-6 hours at a time and has given me freedom in the past to go to church, family gatherings and to hang out with friends in brief snatches although I still cannot work.

    However, every time I start opioid treatment I immediately start hearing comments that the opioids are causing the pain and that I am suffering from MOH. This is the third time I have detoxed off opioids and it has been 3 years since my last dose. I now have NOTHING that helps and I am home bound except for the 2-3 days per month I have a “good” day. I have agreed to detox off of opioids two times before because doctors promised I would get better and both times I suffered 2 years before resuming treatment out of desperation.

    I agreed to stop opioid treatment this time, knowing MOH was not the problem, simply because I was tired of being treated like a criminal by doctors (or when I visit the ER once or twice a year when things get REALLY bad) but now they treat me like a criminal because I USED to strong opioids to manage my pain. Now that I have Medicare I can’t find a pain doctor willing to accept new Medicare patients and even if I could, doctors are scared to death to prescribe something as innocuous as Tylenol #3. The “Opioid Crisis” is mentioned EVERY day, ad nauseum, in television but chronic pain patients who have become victims of this “War on Drugs” are invisible and never mentioned.

    Aimovig, the first new migraine drug in several millennia, offered hope but Medicare refuses to pay and I don’t qualify for discounts because Medicare isn’t “real” insurance.

    There really is just no way to win.

    I truly wish I could try medicinal marijuana but because of where I was born I am denied the right to try it (I live in Dallas). In fact, the Fort Worth District Attorney has gone as far as arresting people for simple possessing THC-free CBD Oil!

    I am glad that some have gotten better but after 13 years of countless nerve blocks, ablation, trigger point injections, nerve decompression surgery, a spinal cord stimulator, a peripheral nerve stimulator, acupuncture, chiropractic treatment and trying every medication known to man – only one thing has helped and I’m afraid it will never be an option again.

  • laurianne729
    1 week ago

    Please may I ask a question? Are you seeing a pain management specialist? If not, it sounds as if you should be; I have been I nearly complete chronic migraine pain for 25 years. I was fortunate that my neurologist realized it was beyond his scope of practice. I have been seeing a pain specialist for the past 18 years and they have always been the one to prescribe my pain (opioid) medication, not my neurologist or my primary care physicians. My neurologist prescribes my prophylaxis and abortive medications but leaves the rest to the expert. Good luck and God bless you

  • josephinestar
    3 weeks ago

    so you haven’t been able to try any of the sumatriptans? (imigran/ relpax etc)
    or they haven’t worked for you? I found they worked a treat for me but that is what I am now getting off… they too build up to MOH if not careful but are much easier to get off my neuro says… so sorry you deal with such shitty people mine as I said is an angel and just tries to find the way to help her patients the best while staying aware of the dangers.

  • Newdancerco
    3 weeks ago

    You aren’t the only one. I have the exact same problem and no idea how to address it. In the last decade I’ve done at least 6 rounds of at least 2 months without any opiate or even OTC meds, for at least 5 different doctors.
    Now my neurologist has flat out told me he will never agree to opiate treatment, and while Aimovig has made a huge difference, I still have at least 1 day per week where I simply cannot function, even to the point of getting my kid from school.

    It disturbs me that an effective option is simply dismissed. It pushes chronic pain patients toward the black market and very serious dangers. It is a short-sighted, knee jerk response guaranteed to make things worse, not better.

  • Michelle Rudder
    3 weeks ago

    The “Opioid Crisis” reminds me of when alcohol was illegal .. the Prohibition, and then marijuana was turned into a demon drug, now opioids. It almost sounds as though the DEA is working with the FDA to keep their jobs. In my country I can get Tramadol OTC, and still I control how much I take because I hate the brain zaps and anxiety attacks I get after taking them just 3 days, and then stopping.

  • Kim DH
    4 weeks ago

    I tried CBD while I had MOH, and it had no effect…

  • Shaggy78
    4 weeks ago

    I am 40 not 50. Could not figure out how to edit my previous post!

  • anaa7geee
    4 weeks ago

    What medication did you take while detoxing? How did you deal with the headaches while doing so?

  • Kerrie Smyres moderator author
    4 weeks ago

    My doctor prescribed Compazine, which I only took for a couple days. I was also using the gammaCore, which I’m guessing is what is what made detox relatively short and easy for me.

    Different doctors recommend different medications to bridge coming off medications you may have trouble with. It largely depends on a patient’s experience and what treatments they have responded to in the past.

    Take care,
    Kerrie

  • Kerrie Smyres moderator author
    2 weeks ago

    Hi Karen,

    I’m sorry to make you wait! I somehow missed your message.

    I did my withdrawal as an outpatient. I hadn’t had MOH for very long and the gammaCore was somewhat effective by then, so I thought it would probably be a decent bridge. Medication withdrawal turned out to be surprisingly easy for me. I’ve had caffeine withdrawal before that was considerably worse. I think it depends on the person, the medication, and the duration of MOH.

    Midrin is no longer available from a regular pharmacy and probably never will be again. You can get it from a compounding pharmacy. You may have to call around to find one that will compound it for you (Google “midrin compounding pharmacy” to find some places to check). It may not be local, but many places will ship. The prices I’ve been quoted range from $1-$2 per pill. I’m not sure if insurance will cover it.

    Take care,
    Kerrie

  • darnapar
    3 weeks ago

    The use of compazine makes me laugh. This medication has so very many potentially dangerous interactions with other medications. Many that chronic migraine sufferes take as preventives.

    The use of Tramadol in place of Vicodin or Fiorcet is another huge flash point for me. Tramadol has been shown to be even more addicting than Vicodin. Yet most drs consider it a better alternative.

  • Karen
    3 weeks ago

    Hi Kerrie,
    I have 2 questions.

    1) Did you do your withdrawal from acute meds as an outpatient? Or did you do it in a headache clinic/hospital as in-patient? I’d assume lots of supervision and treatmentsfor withdrawal distress/pain was necessary.

    2) Are you still able to get Midrin-one of your acute meds that works (like it has for me 100% for 21 years!)-as I have been told it is no longer being manufactured. Shut down by FDA for not doing the proper updated testing.

    I’m DESPERATE to find a way to get Midrin again. I have no other options-having tried everything else possible.
    Can you provide some hope for me that it’s available again?

  • Kim DH
    4 weeks ago

    Prednisone did the trick for me. Not a single headache while on it.

  • devgurl00
    4 weeks ago

    i’d be interested as well. i’ve been taking tylenol 1000 mg for over a month every 6 hours, along with excedrin and now i just started on tramadol. nothing seems to help the headaches, they just get worse, so i’m worried about MOH

  • darnapar
    3 weeks ago

    Personally Tramadol gives me headaches, but it is also no better and is more addictive than Vicodin or Percocet. Just look at some of the European studies on it. With that much Tylenol make sure your dr is doing frequent bloodwork to monitor liver enzymes and alkaline phosphate levels. My body was not able to handle even 1/2 that dosage. Everyone’s bodies are different but it is necessary to monitor how your body reacts.

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