Patient Perspective: Opioids

Use of opioids in general is a widely researched and much debated topic. The Migraine community is often split on this issue as well. Many doctors will say that opioids cause medication overuse headache while others are willing to subscribe it to responsible patients in chronic pain. I personally have been on long-term opioid therapy for the past 5 years. I use it as part of an extensive treatment plan that I have with my doctor. I’m on a low-dose and I’m a responsible user.

I’ve recently written about the proposed CDC Guidelines for Opioid Usage. To get another perspective, I reached out to fellow Migraineur, Don Vanderpool. Don previously worked an architect in San Diego with a large residential firm. In 2005, his Migraines turned from episodic to chronic. While his firm was understanding, it became too much to handle. He opened up his own firm in 2012. Sadly, the Migraines escalated further and he is no longer working. However, Don connects with other Migraineurs through his Facebook page “My Broken Brain.” Don supported my efforts in commenting on the CDC guidelines and I asked if he would share his story in this Patient Perspective.

How old where you when your Migraines started? 

I had terrible headaches as a little boy and I can vividly remember thinking that if only I could cut a hole in my head and pour ice water inside, it would feel better. Luckily I didn’t try that. In high school, I had two relatively severe concussions in my junior and senior years. I don’t know what, if any, role these head traumas played in my eventual migraine life. It was in college that I first experienced what I know as a migraine.

How often do you currently get them and how long do they last? 

Currently I am in a migraine state at least 25 days each month. It is virtually impossible to gauge duration as they flow into each other. I also experience chronic daily headache, so I have some degree of head pain 24/7/365.

Have you tried any of these treatments and have they helped you? Please describe. 

  • Triptans – Treximet, Maxalt, Imitrix, Migranal, Axert, Relpax, Zomig, Sumavel, etc. When I was episodic I had some success with triptans. Maxalt worked well for a while. Also Sumavel Dose Pro (needleless injections) worked for a bit even after I went chronic.
  • Preventatives-  Lisinipril, Amitriptyline, Depakote, Metroprolol, Propanolol, Topamax. Not much success. There may have been a small relief with Topamax, but the fact is, it made me stupid. I couldn’t recall simple words during important meetings.
  • Botox & Nerve Blocks-  Botox did not work. I have nerve blocks done biweekly. Alternating between standard occipital / peripheral nerve block and the sphenopalatine ganglion nerve block.
  • DHE- No
  • What about alternative methods? I do massage therapy once a week. It is the single greatest source of relief I have ever found. It is one hour I can look forward to knowing I won’t be in pain. Huge psychological advantage. I also do Meditation.
  • Acupuncture/Acupressure – Yes, acupuncture several years ago. I look to return and let acupuncture and massage work in concert.
  • Surgery – Was denied by insurance for occipital nerve stimulator.
  • Allergy Doctor/Diet/Foods – Have done some elimination work, but not exhaustively.

 When did you start using Opioids to help with your Migraines?   

I went to urgent care in college and they gave me Vicodin. Subsequently it was much the same. The occasional visit to the ER would stop the migraine and they would give me a script for Vicodin or Percocet, etc. Currently I have Toradol and Hydromorphone available via my pain management Doctor.

Why did you start using it for your Migraines? 

No preventative works for me and abortives rarely so. This leaves me to suffer or seek rescue. I tend to stretch out my prescription, as I prefer to avoid them. On average, I use opioids less than once per week. Given that I have stopped working, I am trying to focus on quality of life, which currently is not great. Toward that end, I believe in pain management and therefore opioids will be a larger percentage of my care.

Describe what happens when you use an opioid during a Migraine. How long does it take before you notice a change in the pain? 

IF it is going to help, I’ll notice a change in pain within half an hour. The pain relief extends only one to two hours. I do not experience any side effects or loss of consciousness. It simply feels like – this is hard to describe – a sheet is draped over the pain and is held down. The pain is still very much recognizable to me. I can feel its presence, but it is held down.

The opioid will rarely ever eliminate the pain and once it has worn off, the pain will rise in scale again. While the pain may continue behind the scenes, and likely come back, the cycle of the migraine will hopefully be disrupted. Perhaps the pain will return at a lower level. The psychological impact of having an opioid in the drawer is huge.

Have any of your prescribing doctors talked to you about the dangers of using opioids?

My pain management Doctor prescribes the opioids, but I thoroughly discuss any treatment with my neurologist first. My neurologist is my lead and, I have tremendous trust in him and give him final say in treatment decisions. A second neurologist is on my team as well who has tremendous input on drug therapies.

Do you ever experience medication overuse headaches or side effects?

No.

Do your family and/or friends know that you use opioids and are they supportive?

Yes and yes.

Are opioids more or less helpful than any of the other treatments you have tried? 

More helpful than most everything else I have tried, but my use is too infrequent and some of the drawbacks have to be balanced.

How functional are you when you use opioids?

At most, I’ll get drowsy. I can be as functional as I am with a migraine.

Is there any part of using opioids that you don’t like? 

Potential addictive qualities. Stigma. The idea that this thing can help me, but I can only have so much of it. Which is to say that the medical community has determined that regardless of your pain disability, you must endure a certain amount of time in agonizing pain.

Do you feel opioid users are judged differently?

Yes we are judged differently. My most recent trip to the ER was a good example of this. I explained that a cocktail of Dilaudid, Benadryl, Toradol, and Zofran is usually what ends up helping me. Upon seeing that I have Dilaudid and Toradol at home, I was interrogated as to why that didn’t work at home and why did I need to go to the ER. Apparently she wasn’t aware of how differently a drug works via IV as opposed to tablet, and on and on.

I think it must first be recognized by our care providers as a valid treatment option for some patients. If and when opioid therapies become more available to the patients, I think we’ll see more acceptance throughout the medical community.

______________________________________________________________________________________

In closing, I want to share with you an eloquent post that Don wrote about opioid usage.

“As someone with chronic intransigent status migraine with daily headache, I know well how this sort of constant pain devastates one’s life. We have drawers full of medications we are chained to, which in the end may or may not even be helping. As such, when the pain gets so bad that we want to claw our way out of our skulls, we often have no option other than the ER.

Doctors need to maintain professional discretion to treat their patients with every tool available. Binding their hands quite simply leaves those of us in chronic pain without any option far too often. The risks of this, including suicide, should be taken to account in future studies. I suppose it falls on us to gather together and form a voice. We are not just participants in studies. We are a rare, but real, subset of chronic pain patients and we will have to self-advocate.”

Many thanks to Don for sharing his story. How do you feel about opioid usage for Chronic Migraines?

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 (14)
  • Macbeck
    3 years ago

    A couple of points here:

    1) I have suffered from MOH, it was severe enough that more than 15 years later I still have to limit myself to only 3 doses of ANY analgesic (OTC and Rx) per week. Thus my opioid is most decidedly a drug of last resort. And absolutely once you’ve had MOH you know what it is!!

    2) Because I have to limit my analgesics I have told my Dr.s for years that I only wanted 10 pills in my narcotic Rx’s, yet they continued to order #30. Finally (!) my doc listened to me this year and ordered #10!!

    3) My neuro has ordered a shot combo of toradol, dexamethasone and phenergan for my prn rescue. Knowing that this will not work for a lot of people, it really helps when I go to Urgent Care or ER and ask for something NON-narcotic. Just tossing this one out there in the hopes it helps someone!

    4) As a nurse for over 20 years as well as a chronic pain patient I can see both sides of the issue. I had one patient who had been labeled a “drug seeker”. Then came the day she described MOH. When I started to explain it to her she thought I was accusing her of intentional action, but when I told her that I also suffered from them she stopped and listened to me. The takeaway? SOME medical people are willing to be educated by our patients (granted, many more are not, but hey, we can but try).

    5) The pendulum on narcotic prescribing used to swing to the liberal side. It has now swung to the conservative and I believe it has not completed that swing. As Karen Rudd said, being honest with your prescriber is vital – we medical people know when you’re lying, and strict honesty builds trust with your prescriber, which is invaluable.

    Thank you for another great post!

  • Katie M. Golden moderator author
    3 years ago

    @MacBeck,
    Thanks for your input. You have a very unique perspective. I think that sometimes patients are so desperate to get relief that it can come off as drug seeking.

    I can’t believe it took your doctor that long to limit your opioids! You know yourself and your body more than anyone else.

    Clearly there has been a shift in the way of thinking. In a positive way, I see that patients who are beginning to have trouble handling their meds, especially opioids, are being referred to pain clinics or given other resources to help deal with the pain and not rely solely on pills. Don’t punish the patient, help them cope.

    Again, thanks for your viewpoint!
    -Katie
    Migranie.com Moderator

  • Chronic migraineur
    3 years ago

    Like Leynal, I also take opioids and have felt totally judged for doing so. I’ve had other doctors tell me that my recurring migraines are just medication overuse headaches. I always have to say that there is a very strong difference between a Migraine and a MOH. The symptoms are completely different with a Migraine than with a MOH. My story is so similar to Don’s as well. I’m 46 years old now. I got a concussion when I was hit by a car just before I started high school, and soon after I started having really bad headaches. I had my first ER visit (of many) due to a migraine when I was a freshman in college. I stopped working about two years ago, due to the severity and frequency of my migraines, and am now in the process of applying for disability, which I would recommend that Don do, if he hasn’t already. I have been taking opioid for well over 20 years now (percocet and the Fentanyl patch) with little to no side effects. I come from a family that is against taking any kind of medication, so it hasn’t been easy for me as I haven’t gotten much support from my family, though my husband has been wonderful. I love the community here at Migraine.com. Everyone here is so supportive and caring. Thanks, everyone, for listening to my story.

  • Katie M. Golden moderator author
    3 years ago

    Chronic Migraineur,
    Thank you for being part of our community!
    I absolutely understand what you mean about there being a significant different between MOH and a Migraine. Having this condition for so long, you understand and can listen to your body about what it needs.

    We all know opioids only mask the pain, but for some of us that’s the only reprieve we get from the constant pain. Sadly, it comes with a stigma. I think only 8% of people who use opioids become heroin addicts. It takes a long time to educate people who don’t have chronic pain.

    Again thanks for sharing!

    -Katie
    Migraine.com
    Moderator

  • Leynal
    3 years ago

    Wow thank you for this. I take opioids as well and have felt totally judged in the migraine community, including this website, where the majority of people say “the research say opioids cause MOH”. Well my story is almost exactly like Don’s. I no longer work, it’s all one big migraine, and getting a little relief here and there is a God send.

  • Karen Rudd
    3 years ago

    I have had chronic intractable migraine since 1973′ so 43 years now. I have tried every preventative (and try every new one that comes to market). I a, one of the unlucky people that has an adverse reaction to ‘triptans, they cause a blood pressure spike and result in a minimum of doubling the head pain, if not more. I have been in pain management for over 15 years, where medications and procedures are performed, unblushing Botox, nerve blocks, facet inejections and cervical epidural steroid injections. None provide relief, but I keep allowing them in the hope that the right nerve will be found. Honestly, the only thing that works consistently are opioid meds, supplemented with mild nighttime sedatives that ensure a minimum of 8 hours of uninterrupted slee. To complicate matters, I have suffered three strokes since December 17, all from unknown causes, but seemingly tied to the extreme pain that is a byproduct of my migraines and cause extreme neuro local symptoms. Was I afraid of addiction? Certainly, but the ability to partipate in my children’s lives, be a wife, work full time and be a semi-normal human outweighed that concern. As one of my doctors explained to me, there is a world of difference between additction and dependence, the first is a mental issue, the second your body’s response to the presence of daily meds. Do I depend on my meds? Certainly am I addicted to them? No. I do NOT get high, get a buzz, of overuse the medications prescribed to me. As a matter of fact, as a rule, I take less than what is prescribed, as long as my pain is relatively controlled. In addition, my primary meds are time released, giving me a consistent dosage around the clock. My doctor and I work diligently to find the most effective meds at the lowest possible doses that work. I also have ‘instant’ release meds (Percocet) to control breakthrough pain. Are there doctors (and patients) that misuse the ability to prescribe, and use, these medications. Certainly. I, on the other hand, take less than what I am prescribed, take mandatory monthly drug tests, which I have NEVER failed, submit my meds monthly for pill counts.have signed narcotic contracts, use 1, and only 1 pharmacy, and submit to any new (or old) procedures that my doctors recommend. I use one doctor for pain managemention, and he coordinates his treatment with my PCP. Is it a hassle? Sure, but I would love to find a procedure or medication that would help. I carry a list of all meds that I take at all times, including pharmacy and doctor information. I have recently relocated to Florida, and am here to tell you that finding someone to prescribe equivalent meds is nearly impossible. I am told that this is because Florida had a huge problem with ‘pill mills’ and over-prescribing of opiates to patients that did not need them over the past several years. I understand the perception of chronic pain patients seeking drugs, but I am here to tell you that that. assumption is absolutely incorrect in the case of many responsible patients who have never crossed the line. I was involved in a traffic accident just over two years ago, and was charged with DUI only because I told the officers what medications were prescribed to me. Needless to say, I was found not guilty when I fought it. My blood levels were substantially lower than what my prescriptions allowed and I was not impaired in the least. I would never have gotten behind the wheel if I had been, period.
    Patients, fight for your right to not be in pain, to partipate in your lives. Be certain to comply with every one of the rules your doctor gives you, compliance works in your favor and shows your doctor thatnyoumare trustworthy. If you can get by with lower dosages, or can take less than prescribed, do it. You do not want to become tolerant of strong narcotics, they are your last line of defense in an emergency, after surgery, or while you are hospitalized. Above all, do not be ashamed to be taking opioids, they are out there for a reason and have been in use for thousands of years as a primary line of defense in the fight against chronic pain. Use common sense, be honest with your doctors, and do not downplay the pain you are in, or the effect on your life.

  • Michelle Rudder
    3 years ago

    “standing order for 15 Tylenol with Codeine / month”. Wow. In my country, we get Panadeine (acetaminophonine/codeine) over the counter. I always have some on me. Proble is, it doesnt work for me.

    I cannot tolerate triptans or ergotamines as I am prone to vasospasms and they give me angina. Depakote, Topamax and the like make my hair fall out, my eyes stop producing tears, reduces me to skin and bones, and gives me bad brain fog BUT they stop the migraine completely.

    I am not on any preventives right now, and I have one or tow migraines a week lasting 3 – 5 days. I take dimenhydrinate for the nausea and bear the pain. If the pain gets unbearable, I take an 100mg Trabalin (Tramadol). If that doesn’t work, (and I usually know within 45 minutes), and the pain escalates, I go to the ER.

    The ER doctors there know me well. They know I come in when oral painkillers dont work, and they understand with migraines, absorption of the drug may be compromised, so they give 100mg Tramadol IV first. If after an hour that doesnt work, then they give my 50 – 100mg Demerol, and keep me a couple hours more for observation.

    If the migraines returns severe, I usually return and they will administer the Tramadol/ Demerol again. If it returns severe the third day, they admit me until they break the migraine cycle. Sometime it takes about 5 days, during which they do MRI and CT scan to make sure no ischemia.

    So right now, Opoids are my rescue. Other than that, I bear the discomfort and work from home a lot.

  • Michelle Rudder
    3 years ago

    acetaminophonine = acetaminophen. Don’t know what happened there. Blame it in my migraine.

  • DadOhio
    3 years ago

    My headache is 30 years old. It began with a head injury and has continued 24/7/365 since. Don has hit my predicament squarely. My docs are being rated on their quality of care and prescribing Opoids reduces their scores.
    I’ve had a standing order for 15 Tylenol with Codeine / month for 20 years. I parse them out over the month selecting the moments in which I want to participate most fully.
    The T4’s have been a constant as I have moved through a mix of preventatives and herbs and vitamins.
    I dread the movement to curtail availability. It will reduce my quality of life by removing 15 three hour periods of functionality each month.

  • Kate
    3 years ago

    Opioids (Methadone) have literally been the only treatment to significantly and consistently help my ten year long constant headache (NDPH). Methadone is quite different from other opioids. It definitely has a stigma as its used for addiction, but it helps a lot of folks who don’t respond to other pain meds (or who like me, would require much higher doses of other pain meds). It also seems to have patients build tolerance much slower. There are more risks, but with some testing (a sleep study to check for central sleep apnea and an ECG to check for prolonged qt), and an experienced doctor who knows to start at a low dose and increase it very slowly, they can be well managed.

    In the current climate I’m lucky to get them at all, especially at my age (30ish) and with headache as my chronic pain condition. Many folks are being taken off opioids for chronic pain, as the climate is moving away from using them for noncancer pain. I had my dose reduced by 2/3 awhile back (after lots of withdrawal and a Suboxone trial, which was a miserable failure). Thankfully I did ok and my pain levels aren’t too much worse. My doctor wasn’t willing to continue to prescribe the dose I was on (even though he put me on it). I’m curious to try to get off them and see where my pain levels are, but I’m just not ready. Currently I’m quite functional. Somehow I’ve continued to work full time.

    I do think hyperalgesia is real, but at the same time, if there aren’t any better options, responsible appropriate use of opioids could be a good idea. Yet at the same time I have regrets about starting on them in the first place. I tried and failed treatments for years before being started on them daily, and have continued to try and fail treatments while on them. Sometimes other things do help, but its very short lived and/or the side effects are unbearable.

    Its too bad that opioids and medical marijuana usually has to be an either/or thing, as I am under an opioid contract that disallows the use of anything such as marijuana (and they do a UA about every 6 months). When I’m no longer able to get opioids (and I definitely think its when, not if), then I’ll give it a try. Unfortunately its also much more expensive to use marijuana than opioids, as insurance doesn’t cover it. Although I pay a couple hundred dollars a month for all my meds, the opioids are only $10 (vs. I’ve read up to $1,000 for medical marijuana). Best wishes.

  • RobertCan
    3 years ago

    Hi Kate – I was also under an opiod contract with my pain management doctors. After multiple nerve procedures and countless prescriptions, they actually suggested I give medical marijuana a try. This month, I’ve spent less than $100 on medical marijuana and haven’t used a single opiod. The amazing part to me is how much better I’m feeling after getting past the withdraw of opioids. I still think they have a place in our treatment, but as last resort, rescue meds. I wish you the best and hope some day you have an opportunity to see if medical marijuana has a place in your treatment. Be well 🙂 – robert

  • RobertCan
    3 years ago

    I’m fortunate to have fewer pain days than Don, but last year I had one month with 24 migraine days and many more months with just a few days less. After almost a year of nerve treatments with limited success, I needed to try something different. My insurance was refusing to pay for on-going procedures that offered limited relief. For once, I agreed with them.

    Two weeks ago, I removed opioids from my daily treatment plan. The goal was to cleanse my body of these daily medications and determine my real baseline pain levels. It’s difficult to know what your true pain levels are when your body is filled with medication on a daily basis. It’s an artificial state, supported or influenced by opioids.

    Initially, my pain levels increased causing me to question my detox decision. But soon, I was able to learn that my baseline pain levels were not as severe as they were when opioids were first added to my treatment plan. That’s not to say I don’t still have frequent migraines. They’re just less severe and less frequent after removing opioids from daily use.

    There’s an important piece to my story that I’m considering sharing in more detail in a separate article. Cannabis. Medical marijuana. After 4 days of use, it’s making a difference and improving my quality of life, naturally. You can manage pain without getting high.

    Opioids have a place in pain management of chronic migraines.They remain an important tool in my treatment plan, as a last resort rescue medication. It’s too early to declare victory over chronic migraine, but I may have discovered my own silver bullet. Time will tell. Be well everyone!

  • JodieE
    3 years ago

    I have had a very similar experience to Robertcan, both with opioids and medical marijuana. There are many times that the medical marijuana has prevented me from reaching for the pill bottle. It is so tempting to reach for those pills… but I have to remember that I didn’t know I was in rebound until I was out of it.

    That said, I am relieved to still have access to opioids, because there are times where nothing else will work. I am glad this author is speaking out on the stigma we have all experienced at some point.

  • Katie M. Golden moderator author
    3 years ago

    Robert Can,
    Thank you so much for your feedback and sharing your journey with us.

    If you want to share more on your marijuana experience, here are 3 great places to post you story on that topic.

    https://migraine.com/blog/patient-perspectives-medical-marijuana/

    https://migraine.com/blog/patient-perspectives-medical/

    https://migraine.com/topic/marijuana/#post-55441

    Best Wishes,
    -Katie
    Migraine.com Moderator

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