Take a deep breath. This is going to be one of the most polarizing issues that we discuss here. It’s also going to be a long post. However, no matter how long the column is it won’t be long or detailed enough. Pain and pain management is a very complicated discussion. It is intensely personal and biased, even when science is discussed.
My position is different from most people. The way I think about pain has changed over time. It can probably be split into three categories: before illness, start of illness, and chronic sufferer.
BEFORE: I was anti-pain medication. From over the counter analgesics to intravenous medicines, I could not fathom the reason for pain management. Of course, I believed in acute relief. There are terrible things that happen to the human body which call for interventions. Beyond that, I had no experience with chronic, abstract, or intractable pain.
START: Give me any and all medications that will provide a momentary respite from my intense suffering. I couldn’t articulate the level of pain I was feeling. There was no guideline or numerical scale that accurately described my agony. Doctors couldn’t see my pain. Therefore, they didn’t understand (and sometime didn’t believe) my pain.
At first they were liberal with pain medicine. Oxycodone pills, morphine drips, and fentanyl patches were used as stopgap treatments. Every intense pain and subsequent trip to the doctor or hospital resulted in less interest of my condition and less pain medications. I learned about rebound pain and opioid tolerance. As doctors began assuming my pain was psychological, and not their problem to treat, I was handed more materials about anxiety than tools for pain relief.
Throughout the first years, I just took what the doctors said as law. I thought that they knew best. But they didn’t. Their directions and pills were not working. I began experimenting with my medications. Changing dosages, doing research about their chemical compositions, reading medical reports about addiction, and diving deep into journals to find out why so many opioid and other pain medications were not stopping my pain. I checked up on the mind-body connection and alternative therapies. I read everything.
Because of that research and experimentation, I gained a new feeling of authority over my health. Doctors became a part of the equation. They were no longer the answer. I weaned myself off most of my medications and added some of them back slowly, at the lowest dosages that still made a difference in how I felt. Still, couldn’t figure out why my pain was out of control. I needed too many and too much medicine to feel any relief.
CHRONIC: It took five years before I found a way to control my pain at home. When I say “control”, I mean it broadly. My pain still strikes everyday. It still puts me on the floor and leaves me sobbing. Eventually, I found a doctor at a pain management clinic who listened to my woes. He understood my distaste for medications and wasn’t enthusiastic about prescription opioids. But, he wasn’t an all or nothing prescriber. A good doctor is a diamond in a field of glitter.
It took some time, but I found that Tramadol was the best pain reliever for my body pain. While it never helped my headaches, it made my days more bearable. It took the sharpness out of many electric shocks, strength out of the clamps surrounding my body, and weight off my tender joints and skin. The body pain wasn’t gone, it was just quieter for longer.
Even with that relief, I was still ending up in the hospital multiple times a month for migraines. I had finally learned the intravenous drug combination that proved most effective. For me, it was a combination of anti-nausea meds, Benadryl, and Dilaudid. No other combination or medications seemed to have the effect of actually stopping my head from exploding. Yes, I’ve tried everything you could think of both in and out of the hospital. Even things that shouldn’t be tried.
Having found a small amount of relief from body pain with low dose Tramadol, I wondered if there was any way to find an at-home migraine stopper that I hadn’t tried. I went back and retried a few things over again: over the counter pain killers, antidepressants, antipsychotics, migraine aborting pills, fibromyalgia meds, antihistamines, morphine and oxycodone pills, a electric stimulator for the forehead, high-flow oxygen, a bunch of different herbs, acupuncture, tapping, meditating, and hitting my head really really hard with my hand until it hurt more on the outside than the inside. They didn’t work, again.
I explained to my primary care doctor that I was desperate not to go to the hospital for my migraines. Each time I went, I was vomiting, often unable to speak, hyperventilating, and in increased agony because of the hospital environment. The doctors treated me like a drug addict and it took hours to get my relief. He offered to prescribe me a pill form of Dilaudid. I was weary. No other opioids had helped. On the crest of my next attack, I took my typical anti-nausea medications and added a tiny milligram of the opioid. Nothing happened and I threw up the pills. I ended up increasing the amount of Dilaudid. It still wasn’t much and I knew that it had to make it into my system in order to be effective. So I took it before my next migraine got out of control. This time, I fell asleep.
Anyone with pain knows, sleep is the ultimate painkiller. Truly, no medication is equivalent to sleeping. Most of us take a pain reliever so we can sleep because sleep is the only magic pill. On a side note, being woken from sleep with pain is extra shitty because you can’t rely on the bliss and magic of zzzzzs. So, that one opioid, out of all the medications, worked for me. It put me to sleep so that my body could stop the attack. Unfortunately, it didn’t prevent migraines. The frequency continued and I couldn’t take those pills every day. They would stop being effective but I was desperate to have a weapon on hand to put me in healing mode.
Then came the “experimental” procedure. It wasn’t a new drug or heavy dose opioid. It was called a Bilateral Sphenopalatine Ganglia Block and the drug was simple lidocaine. Lidocaine is a local anesthetic. It numbs a specific area for a short amount of time; most people have it at the dental office or applied topically for skin procedures. There can be minimal side effects but tolerance and addiction are very uncommon. Having Ehlers-Danlos Syndrome can decreases the efficacy of lidocaine. I knew from past surgeries that, yes indeed, my body did not numb easily. It was important that I shared this information with my doctor so he could adjust the medication dosage. It isn’t a difficult procedure, but it is uncomfortable. Lying on your back, hollow tubes are stuck up both nostrils. Over the course of 15-20 minutes, a solution of mostly lidocaine is slowly dripped down the tubes to coat the sphenopalitine ganglion. After an hour, it’s all over and you head home. There isn’t any recovery time except for a bit of an upset stomach and not exerting yourself for 24 hours.
Some doctors use less invasive methods with a simple nasal spray. I have found that the full tube directed drip is the most effective. I get four treatments over the course of a month and need to repeat the procedure every 8-13 months depending on my migraine uptick. The reason for the procedure is to numb that over stimulated collection of nerves in order to interrupt pain signals the brain is interpreting. So far, this has been a life altering treatment. It doesn’t change the intensity of my migraines but it has lowered the frequency. Even though it’s a small change (about 10% less) it makes a huge difference in my life. While I still get headaches everyday and have to take precautions not to trigger terrible migraines, the slightly lower frequency means that I’m able to handle attacks with my at home opioid.
There are still occasions where my pain isn’t managed at home and I need to get intravenous treatment. I am ALWAYS treated like an addict and as though my pain isn’t extreme, Because of this, I won’t seek help for body or skin pain. I only relent to an emergency visit if I can’t stop vomiting or am passing out from a migraine. I use little tricks to alleviate my pain and constantly update my metal file of triggers. I have found a balance of opioid use in my pain management routine. I look forward to the day when I no longer need pharmaceutical interventions. My medical journey is still full of trying new and alternative/experimental/unproven therapies. Until I find peace elsewhere, I won’t be shamed or embarrassed to use every available resource that I need to make my days survivable.
Pain is real.
An obvious note: All of the medications and techniques mentioned are based on my personal experience. They are NOT recommendations. Do NOT take any prescriptions or drugs without medical supervision. Addiction and dramatic side effects, even death, are very real possibilities with any substance. Do NOT ignore cautions and warnings. If you think you are becoming addicted or dependent on an unintended medication, consult a medical professional. Addiction is NOT weakness and there is NO shame in needing help.