The Meds of Medusa

As my neck is still horribly stiff and painful in a way that feels connected to the 9 day old migraine that was finally obliterated on the second floor of Wood County Hospital Friday morning at 10 am, I am sitting here thinking of the amount of medication it took to truly break it. In a way, this isn’t the most accurate way to think of it – 1 headache, 29 doses of medicine. Many with chronic pain will never feel a “0” on the pain scale again in their lives, but I do, and often. My migraine attacks are still able to be identified as individual episodes. The seven days prior to my first ER visit Wednesday, I was able to keep the pain low enough most of the time with Imitrex or Fioricet and Zofran tablets and over the counter helpers like Dramamine and Benadryl and Sudafed to function, just not happily or well. But then Tuesday I went down hard. I used the last of my imitrex injections. I used phenergan suppositories. But my pain shot up and up in a way it has only once or twice since the beginning of my first clinical trial in 2014.

img_9854

My hospital room with its gorgeous photo of Conkles Hollow (Hocking Hills)

Total meds given to me in the hospital / ER for severe pain and vomiting from Wednesday at 5 pm until Friday at 1 pm:

– 5 liters of saline solution

– 7 individual doses of IV Zofran

– 10 individual doses (mostly 1 mg) of IV Dilaudid

– 1000 mg of IV Tylenol (to boost Dilaudid, like my own hydromorphocet cocktail)

– 3 subcutaneous injections of generic imitrex (6 mg each)

– 3 individual doses of IV steroid Decadron, with 5 days of tablets given for home.

Guys. That is a lot of medicine.

It would be insane to recount everything I took in the week leading up to the ER visit. You would think I wasn’t safe or reasonable but I assure you, I was both. A lot of physicians and others in the migraine community, patients included, might think that I am continuously only making myself worse by getting through the day, each day I can, by taking varying sorts of medications for migraine and pain. “What is this rebound effect I’ve heard of?” You might muse.  Or: “If the medications don’t work, why take them?”

I honestly think that this is what makes it more fucked up: they DO work.

This disease, MY migraine disease, WILL OUT. Medusa finds a way. When my family doctor went off on me last February for too many ER visits, I composed a history here of every single treatment, acute and preventive, that I have tried (it might be called Dear Emergency Room). Everything ever available or suggested for migraine from the early 80s until now is on there. If I had been told to try trepanning or leeches, I would have. 30 injections of botulism toxin into the skin OF MY FACE AND NECK!!!!  6 SEPARATE TIMES!!!! You think a single hole in the skull sounds bad or weird? Or bleeding the humours? What is the difference? Acupuncture, hypnosis, chiropractic, electrostim, hysterectomy.

Yeah, I take a lot of medicine. I am very happy to do so. For the last three years, when not in the midst of CGRP treatment and sometimes when I was, every 4-6 weeks everything stops working. No matter what. I go to the ER to break the ones I can’t. And start over again. Now, the medication part of my second trial finished, I am in even newer territory.

I am almost 44 years old. I took “safe” NSAIDs constantly my entire life until I gave myself an ulcer in 2012 and even then I didn’t stop, I took the Protonix that was prescribed for it and kept on keeping on, because I had migraine attacks or in-between-attack headaches every single day. I had a job to do, and / or school to finish, and / or kids to raise, but certainly a life to live, and it was the only medicine I felt I could safely take more than 3 days per week. But then my iron dropped so low I literally couldn’t do any of those things anyway, so no more NSAIDs. I got a month of iron infusions and still take Protonix for the damage. That was from the “safe,” often OTC med that was least likely to cause “rebound.” The most dangerous medicines to me have been those bought while grocery shopping. I had to detox from Excedrin in the hospital soon after John and I got married.

When I lost all of my harder to get medications in an unfortunate doctor switch in 2013, I had to do the work of trying to use fewer because I didn’t have a choice. With just imitrex on hand, I saw my old hard driving expert neurologist who said that was all I should need. Magnesium supplements, any type. Imitrex injections, use before tablets. I went to physical therapy. I went to biofeedback and talk therapy. I took a chronic pain class. And I ended up getting a migraine that rocked my 1-10 pain scale and scared me so much that I swore off the swearing off, but my neurologist’s assistant said, hmm, maybe a weird reaction to something. Maybe cluster headaches. Try oxygen. Oxygen, Magnesium, imitrex, outpatient DHE  infusions. I agreed to try. It didn’t work.

Oh, and she also said this: “Your treatment is in God’s hands.” Which isn’t a belief system I prescribe* to.

I found my own way. I found a pain management specialist. I continued doing the therapy and biofeedback. I was recruited into a clinical trial. After the family doctor debacle mentioned above I found a local neurologist who would  treat me with respect and understand I was not looking for a cure or even expecting to no longer be chronic. But I did get my life back.

I may lose it again yet. I regain and I lose every five years or so, it seems. But I have been down every road, and I know what it takes for me to live and be happy and not be forced to spend 75% of my life in bed. So yeah, I take some medicine or another every day. It’s definitely not recommended for most with migraine, and I wouldn’t recommend it myself, to someone else, but we all take our own circuitous route to treatment that works.

The hospitalist said Thursday he had never met anyone with such severe “migraines” (migraine disease). I know so many people like me, with their own types of extremely severe migraine, some of them personally now. They fought their own battles to live, to get where they are, and now most are advocates like me. The hospitalist said, “We do not have DHE but we will use our entire arsenal if we have to, to get your pain reduced.” At that moment I was sitting there with purple and silver hair standing straight up, tear streaks down my face and heating pad burns on my forehead, in a green #UnionStreetStrong (Athens) t-shirt undoubtedly splattered with vomit, an IV poking out of my inner elbow right next to a Darth Vader tattoo, and this doctor looked at me with real respect.

Thank you, sir.

This was a very expensive migraine attack, though, you see? And my NECK STILL HURTS. That isn’t good. It either means that I shouldn’t get too comfortable… or that I just literally can’t get too comfortable. It could be part of postdrome, still. Or a combination of steroids (though the tablets help the neck pain so probably not), constant dry heaving and vomiting up bile for 8 hours, and a hospital pillow. And holding my puffy IV arm in a bizarre manner to avoid setting off the occlusion alarm.

Or I could wake up in the morning with that boomerang of fucking burning-ass pain slapped back into place over my right eye.

Which is it?

What will happen?

What?

Selective amnesia. I live.

I win.

img_9855

The surprisingly tight mesh weave to hold my IV in place. The IV is the same color as Vader’s lightsaber, which is on the other side.

 
*channeled Carrie Fisher with that one.  🙏🏼

Advertisements

3 thoughts on “The Meds of Medusa

  1. Reblogged this on The Migraine Chronicles and commented:
    This is a wonderful post from a friend of mine who also writes for Migraine.com. Like my friend, I have walked an arduous path with my migraine disease. Like she has, I have tried nearly everything ever recommended to me. Like my friend, my disease still cycles through periods of near hell. Those of us who have been walking with migraine for a long time do what we can to survive – and thrive – through those toughest times. Thank you for sharing your story, Lady Migraine! I applaud your bravery.

  2. You poor, poor dear. I am 64 and suffered with migraines my entire life from childhood. I have never met or even heard of anyone who suffered as badly as I did. As I started bearing my children, they got worse. I called them “my sick headaches” until I found out they were migraines. I got to the point where I had one almost daily, and they were horrid. The pain was excruciating, and the projectile vomiting severe. I couldnt even cry because it made them worse. I also, to this day, use Benadryl and Sudafed to assist in most migraines. I used Cafergot in the early days. Sometimes it worked. I was cursed. Finally came the day when I had a migraine that wouldnt stop. It was named Status Migrainus, and I had it non stop for a year. Every minute of every day. I had to stop working. I was hospitalized for 10 days. They fed me pretty much what they gave you but the Triptan drugs such as Imitrex were not legal in the states yet. So I had DHE 45 injected into my IV and it made me so sick, but what could I do? I had to contonue to give myself DHE injections three times a day for that year. Then one day, after suffering status migrainus for a year, i had a day with no headache. It wax patadise, but of course my previous pattern of migraines returned, but i at least had short periods of respite. I worked as a RN in hospital so I was on my feet, would get the inevitable migraine, go in the ladies room for 20 minutes, inject my DHE, lie down, then force myself to get up a d go to work after throwing up in reactio. To thd DHE. I thought life couldnt be worse. Finally the triptan drugs came to the states. They were legal in Europe and Canada, but had not been approved here yet. I kept asking my neurologist, “are they here yet?”, meaning in the states. I had better
    Results with the triptans, but they also made me sick. The good news is that they do decrease as you go through menopause, and the severity lessens. I still get them 3-4 times a week, but they are much milder, of shorter duration, and the vomiting is rare. I still use Imitrex. I wish you better luck than U had with mine. My heart goes out to yoh.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s