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?
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?
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