Natural One

I have never been a big believer in natural remedies and therapies for my migraine disease. I’ve tried acupuncture, biofeedback (with and without electronic machines), talk therapy, hypnosis, physical therapy, massage, and chiropractic care; as well as magnesium, B2, feverfew, and ginger. I believe some of the therapies would work in conjunction with medicines to reduce stress and therefore the number of headache triggers; and the vitamins and herbs might help a little if I were patient enough; but it’s always so hard to get all the factors in control at the same time. I’d wind up in the hospital again after spending more of my (or my parents’) money and effort and belief and time and think, “Well, that obviously wasn’t working.”

Talk therapy is the longest treatment I’ve stuck with – most recently I tried “pain therapists,” social workers or psychologists who specialize in counseling patients with chronic pain. Those were pretty much dismal failures. The most successful therapy I ever had was in the late nineties with a nurse psychologist named Virginia, a mind/body tough love practitioner. She introduced me to the book “Women’s Bodies, Women’s Wisdom” and gave me homework.

The most horrible experience I had was with a near-elderly hypnotist who “practiced” in his home basement office and was recommended to me by the woman who taught my Tension Management course in college, which I subsequently failed for missing more than 3 classes. This guy claimed to have cured anyone who ever came to him with migraines. After a few sessions with me, he told me in my weakened post-hypnotized state that I didn’t want to shed my illness because I still wanted to be taken care of by my parents. Even in my early twenties I knew there might be some truth to what he was saying (I had almost lost my parents due to a car accident when I was 12 and had been traumatized which is something I worked on later with Virginia) but also knew that a) he had brought that to my attention in completely the wrong way and that b) nothing was ever that simple. I sobbed hysterically in that basement room, stared down upon by a huge poster-sized photo of the hypnotist/therapist/charlatan on a mountaintop with skis, ran out of there and never went back.

More failures – three completely different chiropractors, ten years apart, found three completely different things wrong with me and promised to make me feel better after lots and lots of sessions. I stayed with each of them for a while until it was clear I wasn’t improving and was perhaps getting worse. The acupuncture was extremely painful, oddly, not at the needles’ points of entry, but all over, like my muscles were being poisoned. The tension in my body while it was happening *gave* me headaches. Then the guy left a needle in my head, which I discovered because of a strange tingling sensation around my hairline on my drive home. I never went back there either.

As far as vitamins and herbs, I don’t know what it is about B2 that seems to make up something that migraineurs need desperately, but our recommended daily dose is 400 mg, which is 23520% of the RDA. I stopped taking it at one point and then when I wanted to start again, it was no longer carried in any local grocery / drug stores. Magnesium is tough – generally it is agreed that those with frequent migraine have low magnesium – but how to replace it in the body is tricky. Studies are inconclusive, and nowhere online can I find any agreement regarding how much to take, what type, when, and with what. Generally it is agreed that Citrate is absorbed best.

Since my hysterectomy, when I didn’t see quite the decrease in headaches I’d hoped for, I realized it was ridiculous that I was not taking these harmless, mostly side-effect free vitamins and minerals which are supposed to be so good for me. Dr. “Gotohell” who has become much less the devil to me now (after lecturing and yelling at me and john for hours one night in the ER and essentially refusing to treat me) and can be almost kind, now, post-hysterectomy, told me his fabled migraineur wife had recently begun taking a mixture of ginger and feverfew which was working for her. I thought, since it couldn’t hurt, it would be nice to tell him I was at least trying feverfew again too, next time. When I went to the store, I located feverfew but couldn’t even find magnesium citrate, it was all oxide. And I thought, the thing that has changed the most since the last time I was taking these things is how much is available to purchase online now.

So I typed “magnesium citrate” into Amazon, and lo, there it was. And cheap. And because I’d searched for that item, tons of other migraine products came up. My mind reeled. Vitamin B, Feverfew, Butterbur, Coenzyme Q10, ginger. Hyland’s natural migraine relief tabs, which have the controversial belladonna in them, so after their teething tablets problem you could no longer get them in stores. Some pepper (capsicum) nose spray called “Headache Buster.” Something called “Migrelief” which contained the right amounts of magnesium citrate, vitamin B2, and feverfew. I promptly added that to my cart.

4 months later I feel like I can tell a real difference, especially now that I’m off the Lamictal. I have since bought and started taking CoQ10 and Butterbur (both of which I’d read a lot of encouraging things about lately, and again, no side effects); the Hyland’s tablets; the pepper nose spray (provides a good kind of temporary relief, like an internal ice pack); a peppermint balm stick to apply directly to the head (not as effective because my forehead is so immune to all that kind of stuff now, but it smells good); and discovered on a separate website something called “Migraine Support Formula.”

http://migrainetreatmentgroup.com/ingredients

I was SO skeptical, because of the separate website and all the glowing,”I’m CURED!!!” testimonials. The story of the husband who had made a lot of money, quit his lucrative business searched and searched the world and finally discovered the right ingredients and founded “The Migraine Support Group” and developed this formula. But I thoroughly read the whole website, and it was every vitamin, mineral, or herb I’d ever heard of being beneficial for migraine ALL IN ONE. Some ingredients, like 5-HTP, I’d heard of and tried years ago, but like all the other naturals, I hadn’t stuck with it long enough. The obvious magnesium, B2, and feverfew in the right amounts. But also B6 and B3, Butterbur, ginger, CoQ10, valerian, ginkgo, white willow bark. Amazing. I did a search of the company and failed to learn anything bad about it. All the scientific studies are linked, there’s a money back guarantee, and it’s certified. And it’s not that expensive. About the same as I am currently be spending on Migrelief, CoQ10 and Butterbur per month, which is just 5 of the 12 ingredients.

So, I am super excited. I have about a month and a half of Migrelief left and don’t want to waste it, but as soon as I’m down to about 2 weeks left I’m going to order the shit out of some all natural, 100% satisfaction guaranteed, Migraine Support Formula. The worst that can happen is that it won’t work, but I’ve had all of those ingredients before and know I can tolerate them. It will be interesting…

And… this is the first week in a month and a half that I haven’t had to use sick leave!  Appointment with Dr. “Manhands” tomorrow.

Wash Away The Rain: update

I wanted to write a brief post just to let people know that yesterday, Mother’s Day, went really well. I was able to get up and have a wonderful day with both immediate and extended family, and was also able to go shopping with X and go in to work late to make sure Online Non-Resident Registration went okay. The presents from my family were super fun (a white Hello Kitty watch and Lego Friends set were highlights) and while shopping I bought good gifts for Mom and SIL but also a few great things for myself and the girls too. A double labradorite cabochon ring; a t-shirt with Ohio on it and the phrase “OH How I Love You.”

Dinner with the extended family. I held my new niece Sophia longer than ever before; did not have to leave early; even went to the playground across the alley and kicked the sky, swinging, at my old elementary school. For that moment, for that day, just me.

Black Hole Sun

My latest preventative medication attempt was Lamictal. It is an anti-seizure medication used very successfully for bipolar disorder. It has also been used for migraine prevention, off-label of course. I have taken it before, but couldn’t remember any specific side effects or why I stopped taking it. The usual problem for me from this type of medication is extreme, can’t-get-out-of-bed type depression. Taking Topamax, I’d have been a suicide risk (this was pre-children) but for the fact that there would have been no way to summon the will or motivation to plan or even move. This time, I obliged to appease my new doctor, the cold and distant, hot and young, terrible at listening Dr. S “Manhands”.

And when I got home from my appointment that day, I did some research and found that Lamictal really did sound very different from Depakote, Neurontin, Topamax, and many others I’d tried with disastrous results. Lamictal is used sometimes to treat depression which is unresponsive to SSRIs; depression was listed as only a very uncommon side effect. So it seemed different. No weight gain, no lethargy, no sexual issues. In fact some people reported energy and sex drive boosts. The one bad possibility was a potentially deadly rash, so yeah, I was watching out for that.

John said he noticed an immediate difference, that I seemed distant, like under a veil. I shied away from affection. He’s always the first to pick up on those things. Because of the potential of Deadly Rash you start at a very low dose and slowly increase, every 2 weeks. The depression and anger, noticeable even to me, started the second week, while still on only 25 mg.

The blog entry entitled “anger”…? That was Lamictal. It should have been entitled “What Anti-Seizure Meds Do To Me.” Rip pictures of my family, art my children created, artsy black&whites of Marilyn Monroe off my walls? Not me. Feeling that sorry for myself because of my illness isn’t me. I’m very accepting of it, normally, because it’s all I’ve ever known, and I wouldn’t be the me I know and understand without the fucking migraine. So I live with it, day in and day out, only feeling sad when I miss an important event or let down my co-workers too often. And, obviously other times too. When I have lots of ER visits. Doctors not taking me seriously. A med I had high hopes for not working or making me worse. Lamictal: a double edged sword. Not only did I get worse headaches while taking it, it also took me to the deep rock bottom valley of depression, so much so that even after deciding to give up and taper off of it, I physically could not get out of bed yesterday and lay with the covers pulled up to my chin, falling in and out of nightmares, tears streaming down my cheeks. I received some much needed support from Facebook and my friend Leah at work, who said the glass palace was blissfully slow and to just take care of myself.

When J came home from teaching he coaxed me out of bed. He talked to me for a long time as I prepared to go to work 4 hours late about how it was the drug making me feel that way. The research HE did produced stories of people planning suicides and then realizing it might be the Lamictal. I wrote a post on Facebook thanking friends and family for supporting me through everything. I thought I might be able to go to the show John and my brother were playing at our favorite Local Dive Bar that night. I flushed the rest of my Lamictal down the toilet and weaved a small braid into my hair. Work, the sunny, friendly, beautiful glass palace, would make me feel more myself.

Except it didn’t. Immediately upon arrival I got two messages: a text that the friend I’d hoped to see at Dive Bar couldn’t go; and an email from a person close to me saying I hadn’t thanked them personally in that Facebook post and how hurt they felt. Those two things would upset me a lot on my best day, for various reasons. Why do I care who’s at the show, my partner is performing, go anyway! but it seemed impossible. And why would I, why DO I, reveal so much on Facebook when even though it is sort of my migraine support group, it often leads to problems? These thoughts resulted in self-blame, sadness, feeling unloved. I decided I couldn’t go to the bar and that I had to quit Facebook for a while. All I wanted was to be back under my covers. I was barely able to sit in my chair and do a minimum of work, counting down the few hours of my shortened day. Jess bought me a milkshake with whipped cream, which helped. I left early enough for john to make it to his show. And back to bed, “hang my head / drown my fear / till you all just disappear,” girls sleeping, me fervently hoping that the fucking Lamictal would be flushed out of my system as soon as possible. Get up? Try to live? Why?

Today, my family is allowing me another cocooning day, avoiding the things I had planned, which would involve the impossibility of People and Small Talk. Good things: my middle of the night headache I’ve had every night this week was not as bad last night. Earlier this week I looked into Zanaflex, the muscle relaxant Dr. H put me on right before leaving the practice, and there are studies showing it effective in chronic migraine prevention at much higher doses than what I was prescribed. I called the office, and Dr. Manhands trusted my instincts and increased the dose 6x (still half the target dose in the study). I can’t tolerate any standard preventative so this might be good as long as I can stay awake during the day. And the support I receive from my family and friends, particularly from my amazing and nearly other-worldly partner J, is still nothing short of miraculous to me. In that way, I am the luckiest girl alive.

But for now… more Xanax, more Zanaflex, more restorative sleep. Hoping for the rain in my heart to be washed away, so that the winged real me can emerge.

**photo credit: Rebecca Midden

anger

Nothing makes someone with a migraine angrier than not being able to get the pill out of the fucking foil.

I just ripped down the collage I put on the wall by my bed because I’m sick of lying here and staring at it all the fucking time. I’m sick of this room, this bed, the smell of this house. My rotten skull.

Sir made me a beautiful double-sided playlist (like a tape). Peace Of Mind by Boston was on it. Nightswimming by REM. I realized how long i’ve been doing this. “‘I’m alive,’ she cried, ‘but I don’t know what it means.'” He had to turn it off because I curled into a ball and started wailing. Now he’s asleep.

And I’m awake at exactly midnight, the humidity hanging in the air and the moon almost full. And I’ve had this same headache for about 5 days, never getting severe enough to go to the hospital, but I am on my fourth Imitrex in 24 hours and I’ve taken 8 Zanaflex since 10 pm. It is like an agonizing fog with sharp edges. I just want to sleep. For a long, long time. And maybe I can hang out there, in sleep land, and be free of the shackles that pierce my stupid brain, my veins, pointy and jagged and always, always reminding me: we are here. And we will make you hurt in outwardly undetectable ways nearly every day for the rest of your life.

I sort of can’t believe I haven’t gone totally insane.