Monday, March 17, 2008

My Confession: Part II--History of Migraines

I really can't remember when my migraines first began. It seems like I can't remember having a migraine before 1996, but I think they began earlier than that. I didn't have them in high school, but I sometimes had nausea and a weird onset of drooling before menstruation, which may have been slightly seizure-like in nature. This happened a few times after I had migraines too.

By 1996, which is when I took a nanny job in Oregon, I remember having to tell my employers that I suffered from migraines and how would we work around it if I had to stay home.

I've had roommates who are witness to the severity of my migraines. Monica Allen and Shirina Edwin lived with me for a few years, and then I lived with Halea Meyers, Catherine Meyers, and Terri _____ (forgot your last name Terri!). They all witnessed my migraine episodes and knew how severe they were. While others doubted I couldn't go to their party or on that date because of a "migraine", my roommates knew I wasn't making it up. I was prostrate, usually on my bed with blinds drawn, for 3 days. (At first they seemed to be shorter but the periods lengthened, it seems, over the years, and in the last several years, they go on for about 3 days without intervention). They usually came over my left eye and I usually saw a droopy eye syndrome too, with my left eye being more droopy and shut than the right.

I found minimal relief by applying pressure to the nerve under my left eye (my migraines are almost always on the left side) and rocking the base of my head back and forth into a rock which I would bring in from outside. I took handfuls of exederin, advil, aspirin, and caffeine, but had to suffer through them. I would sometimes take scalding hot baths to try to draw pressure/blood from my head to the rest of my body instead.

Often, I would wake from sound sleep at 3 a.m. with the migraine, so there was no forewarning or way to call in the day before, for work. I quickly discovered I was suspect because my migraines often occured on Fridays or lasted through Monday, the days other people sometimes took off for "partying reasons". Unless someone knew a family member or friend that had migraines, I often faced doubters.

Finally, I was diagnosed. I tried triptans, but Immitrex didn't work. I would take it and my heart would race, but it didn't alleviate the migraine. I would try another dose and it was still ineffective. I was completely debilitated by these migraines and out of commission. I missed work because of them and couldn't always be reliable, which forced me to look for jobs that offered flexibility, solely to accomodate my migraines.

I had 2 migraine episodes per month, pretty much guaranteed. I would have a 1-3 day episode before my period, and a 1-3 day episode afterwards. If I was under a lot of stress, I'd sometimes have more. The longest I ever went without one was one month, in over 10 years. They were bad enough to send me to the ER and eventually I saw 2 different neurologists. Until I was prescribed Vicodin and muscle relaxants, I had zero pain relief. When I first had the prescription narcotics, I could take just one of each and fall asleep for the entire day and not worry about the next 2 days. But it took up my whole day to "sleep it off". Nothing ever prevented them from occuring.

I tried eliminating suspect foods, and other trials, and nothing worked. More exercise or less exercise made no difference. I tried aromotherapy and went online to find treatments. I read a combination of lavendar and peppermint oil helped a little with nausea and was calmative, so I added large doses to scalding bath water. My roommate once found me in the bathroom, with the door closed, in the dark (no windows), sitting on the edge of the bathtub with my feet in scalding water, and my head in my hands. She had smelled the oils at 3 a.m. and wondered what was going on. I would pray when I had these migraines. It hurt to even think, and I sometimes couldn't speak very well, but I would pray God helped me through that migraine. I sometimes thought I couldn't make it, and wished to die rather than live like that. I wasn't suicidal, I was just in extreme pain. When I had more than two migraines (one month I had 15 days of migraine and thought I was going to die, or wanted to), I prayed to God to please help me. I begged, begged, for help and strength to make it. Honestly, narcotics were a godsend. But they didn't last. It took more and more, and with such regular migraines at regular intervals, I had to go to ER. I started going to ER after I realized they COULD do something to abort the pain. When my narcotics didn't work, I went in and got Demerol (in Oregon) and had relief.

I also once had a trigger point injection that paralyzed muscles in the back of my head, and it worked that time, though later in Wenatchee when it was tried, it never worked.

I had some control over the pain of migraines until I moved to Wenatchee. When I ended up at their ER, they assumed from the start that I was not a migraine sufferer, but "drug-seeking" and they wrote me up as such. I continued to go in for treatment, and they refused to help me each time. I knew what worked for me, through trial and error, and I told them Demerol, but they thought that if I knew what it was, and was "asking for narcotics" I didn't have migraines. Which was ridiculous and sent me into an extremely horrific period of unremittant pain with zero migraine control. It affected my work in college and led me to think perhaps death would be better. No more suffering.

They tried these "cocktails" of anti-inflammatories which they thought were on the cutting edge, and they didn't work. They tried injections of Toradol which killed my liver, and didn't help my migraines. They would just send me home. Finally, I got a PCP who prescribed narcotics and muscle relaxants again. Which helped with the pain. He also had a contract with the hospital to give me an injection of morphine if I presented because my home narcotics didn't work. The morphine was very effective for the pain and sometimes it completely aborted the pain enough so I could sleep and the migraine would go away. The main problem with narcotics though, was that they were sedating, and over time, you had to use more, which led suspicious persons to claim I really WAS drug-seeking and fax my "flagged" records all over town, in violation of HIPPA, because they thought I was not only drug-seeking, but possibly mentally ill for my persistence in going to ER and asking for help. After I had a problem with my PCP and told him I was leaving his clinic, he retaliated and told everyone HE had kicked me out and he withdrew my only known remedies for migraine pain: he told the ER to cancel the contract for morphine. In the 7 months of having the contract in place there, I had only had to take advantage of it 3 times, but they started feeling free to defame me as drug-seeking again.

I suddenly had no home remedy and no doctor in town would prescribe what I needed for pain control, so I had to use the ER even more, and I felt, even if they weren't treating me, at least I was documenting how many times they refused standard of care.

They started writing my migraines up as "tension headaches". Dr. Jobe yelled at me, right before the hospital filed for an injunction against me (to not use their ER), when I presented with migraine, "You don't have migraines! I'll give you some Tylenol for your TENSION headaches!" After that, I decided to get copies of 2 neurology reports from Oregon, from 2 different neurologists, who concurred I had migraines. I asked the hospital ER to file these in my chart, and reminded them how they had been slandering me and refusing to treat me. Now I had given them proof. Their response was to file the legal injunction against me, to make ME look bad, and they won, because they convinced the Judge that I didn't get a court appointed attorney for an action that asked for non-monetary remedy. I was railroaded, and then of course, the medical community in Wenatchee made sure to call CPS and let them know they'd won an action against me.

I suffered tremendously because of arrogance and ignorance, number 1., and then malicious cover up. Even AFTER I had given the hospital proof that I had migraines, they told me I didn't HAVE migraines and refused to treat me, and said I had to have an evaluation by THEIR neurologist. Of course I knew they're only objective was to get someone on their side to agree I didn't have migraines so they'd get a pass. I told them I would see another neurologist, but that we'd have to agree on someone from out of the area. They refused.

Next, they slandered me to every clinic and doctor in town. I couldn't get migraine treatment anywhere. Finally, they began to try "other alternatives" at the ER after I got a PCP from out of the area. They tried trigger point injections, oxygen, and other things but nothing really worked. There was only one doctor who was willing to give me Demerol and that was Dr. Shipman, who was the first ER doctor to stand up to the rest of the group and acknowledge I did have migraines and document them as such.

Eventually, a doctor from the Wenatchee Valley Medical Center, wrote a letter to my out of town PCP, telling him I was drug-seeking because I'd asked for narcotics when my PCP was out of town and hadn't filled my prescription. My out of town PCP decided to go with the flow and concurred. Then I was stuck with the medical director there, who tried to control everything and instructed his doctors not to treat me or do diagnostics for a variety of things, who said he could only try major anti-seizure drugs for my migraines. He wanted me to take Topamax. I took it for 3 days or so and quit. It was the worst, most god-awful stuff and there is NO way anyone besides the worst epileptic, should be using that stuff. It main action is to significantly slow down the brain, which affects everything.

Things only got worse with the medical community in Wenatchee. They were always right, and I was always wrong. They knew everything, and I knew nothing, even when I presented them with my description of symptoms, and diagnostics from Oregon and Seattle. They had to be right, period. They started claiming I didn't have migraines again, and that ALL my problems were psycho-somatic. Which caused an incredible amount of pain, suffering, distress, and helplessness. In the meantime, I let them know I was planning to sue them for defamation, and medical malpractice (my son and I were horribly injured in childbirth), and submit a complaint to the Office of Civil Rights over their HIPPA violations and attempts to blackball me. They were the only parties to begin making complaints to CPS, and all complaints were dismissed as unfounded until the last one, which is when I left for Canada with my son, tired of harassment and the inability to find medical care for me and my son.

When I was in Canada, I had my regular migraine onset. Someone claimed I had gone to the Canadian ER after "taking too many pills" but it was not true. I called Canadian ambulance or 911 and specifically told them it was for migraine and that I didn't have a way (ride) to get to the hospital. So I went and they gave me an intravenous mix of gravel, DHE, and something else. The main active ingredient was DHE, which is an ergotamine.

I had never heard of it before, in all my years in the U.S. Not once had anyone tried this. And I was shocked to find it worked. It immediately got rid of my migraine and the migraine didn't return (to last 2 more days). It also wasn't sedating in the least and I didn't have to "sleep it off". It was just gone. In my mind, this proved I had migraines and that they responded to a traditional treatment that had been overlooked or deemed too expensive to use in the U.S.

However, it was intravenous. I wanted to find something I didn't have to go to ER for. I found out a form of it was available through an intranasal spray called Migranol. It was expensive. It was also not supposed to be as good as the IV of DHE. But I had it with me, just in case. Three sprays, which I haven't even had to use because I found out something else works even better, and as a preventative as well.

I also tried a newer triptan, Axert, while in Canada, and they worked after a half hour, but the side effect was nausea and some dizziness, and the migraine was present full-force the next morning.

I'm sure not every migraine sufferer experiences the prejudice and refusal of care, and suspicion that I've faced, at least not the degree of having legal injunctions filed against them, defamatory charts made up, or complaints called in to CPS that "Ms. Garrett keeps coming to our ER looking for drugs--we are concerned about the welfare of her son."... but I know other migraine sufferers experience loss of productivity and have very severe and real pain. And I want all of them to know there is hope. In this post, I wrote out my history of migraines and how they've affected my life. In the next post, I'm going to write about how the marijuana was used, and with what results.

This post is dedicated to the lawyer I've been working with lately, Mr. Robert Beaty, and his daughter, who is a migraine sufferer who has not found a cause or good treatment. I thought about his daughter and how I know how painful migraines are, in making the decision to tell the world that marijuana is working to prevent my migraines at minimal amounts, and how it others should know about this and be free to try it themselves. How could I, in good conscience, keep this to myself? These are people's lives, and friends, family, and employers, that are affected.

Keep an open mind!

2 comments:

Anonymous said...

Have you ever considered acupuncture for your migraines? I have helped a lot of patients become migraine-free without the side effects of medication. You should look for a good acupuncturist in your area.

Mama said...

hello!

I've had people suggest acupuncture. I would be completely open to it, except for the fact that in general, marijuana is cheaper--in fact, the cheapest solution for me. It's economical.

but I'd love to try acupuncture just for the hell of it. as long as i'm not getting someone who also happens to have voodoo dolls in their closet.