This entry is pretty long and apologies for that. But I wanted to get the whole story out there because during my migraine saga, reading other people's experiences has been incredibly valuable. So I put this out there in the hopes that some other poor migraineur may someday stumble on and find something of value. Or at least feel like he or she isn't all alone in the crazy pain of living with migraines.
Some important disclaimers at the outset:
Now, with that out of the way, let’s get going.
I have had migraines at least since high school. I didn’t know they were migraines back then – I used to just refer to them as “those headaches that make your stomach hurt.” Fortunately, they were rare enough occurrences that I didn’t need to find out more about them than that. Seriously, I think I got them maybe every 10 years or so. Infrequently enough that I can remember most of the early ones. As I got older, they started happening a little more often, but I was also working office jobs by then, so spending a lot of time under fluorescent lights staring at computer screens. Easy triggers. Still, it was never anything that drinking a coke or maybe taking some Excedrin couldn’t cure. Even the really awful one I got back in 2003 that started as I was driving home from a rehearsal. The lights on the highway were total agony and by the time I reached my apartment, I had to climb up the stairs on my hands and knees because I couldn’t stand. I crawled into the bathroom and threw up, then took some Excedrin and went to sleep. I still felt pretty lousy the next day, but went to my internship with a pharmaceutical company anyway, having taken two Excedrin before leaving the house and drinking at least two Cokes during the day. To say I had the shakes would be an understatement! But it was tech week, so off to rehearsal I went and everything was fine by the next day.
Such simpler times.
My daughter was born in 2006 and that’s when things started to get a little trickier. The migraines started to become a pretty standard part of my monthly cycle – usually hitting about a week before my period was due. Still generally nothing that the drugs or the caffeine couldn’t take care of, even the one when she was about three that was much like the 2003 one. She watched a lot of Dora that day and I remember crawling to the kitchen to cook her a frozen pizza. My husband was traveling. Real parenting win for both of us!
Still – severe ones very rare.
I’d say they really started ramping up about five years ago. I was quite sure it was tied to my hormones and the fun of perimenopause. But they were no longer just once a month. They were still somewhat tied to my cycle but there were also a lot more rogue headaches happening. And I couldn’t find a consistent trigger. They would happen when I got my period, when I was ovulating, when someone sneezed in the next town over. When I ate chocolate, when I didn’t eat chocolate. When the weather was good, when the weather was bad. When I hadn’t gotten enough sleep, when I’d gotten plenty of sleep. I kept food journals galore. I was introduced to Imitrex around this time and also started seeing a neurologist. She was not a believer in food triggers or in the value of the food journal (the entire internet would beg to differ, it seems), so I stopped doing that. She was, however, a big proponent of preventive meds, so we started that.
(anecdote is not data)
So I made an appointment there. I also started seeing a chiropractor. This was all very hard for me to do, to put aside my skepticism and suspend my disbelief, but at that point I was willing to do just about anything. I even started reading about ayurveda. Apparently, I am mainly pitta (heat) or maybe pitta vata. Because, you know, pseudoscience. I also eventually ended up doing acupuncture and cupping. Cupping, for crying out loud! And I went through a phase of being afraid of histamines in food.
Sigh…
The functional medicine place was an adventure in things like testosterone cream, digestive enzymes, adrenal fatigue, and some food sensitivity tests that I am STILL fighting with my insurance company over. They were lovely people in the office, but...not my style and it didn’t work anyway.
However, as the weeks went on, there was no change in the migraines. I got used to being on medication, but I started to feel like I was watching everything in my life from something of a remove. Like I wasn’t fully engaged in life. Plus I would have these flares of temper that were yucky. And still the headaches. And night sweats.
(this is MY personal experience. Lots of people have great experiences - life changing experiences on anti-depressants - and that is wonderful. They are a great tool. Just not for me)
So when we got back, I gave up all grains. Not just gluten, not just oatmeal. All of them. The rice, the corn, the quinoa (which is actually a seed, so I’d figured out a long time ago I couldn’t eat it). And when I went back through my journal, I saw various times of suspecting all of those things and complaining of things like how popcorn made me feel so bloated. I told myself it would be 30 days. And it was. And for 30 days, I had no headaches. None. It was amazing.
Some important disclaimers at the outset:
- I am not, nor have I ever been, a medical professional of any sort. I did play Nurse Flinn in a production of “One Flew Over the Cuckoo’s Nest,” but I wouldn’t trust her medical advice any more than mine.
- This is only MY experience. I do not presume to speak for anyone else’s migraine experience.
- Anecdote is not data. Let me repeat that, ANECDOTE IS NOT DATA. I am not proof of anything.
Now, with that out of the way, let’s get going.
I have had migraines at least since high school. I didn’t know they were migraines back then – I used to just refer to them as “those headaches that make your stomach hurt.” Fortunately, they were rare enough occurrences that I didn’t need to find out more about them than that. Seriously, I think I got them maybe every 10 years or so. Infrequently enough that I can remember most of the early ones. As I got older, they started happening a little more often, but I was also working office jobs by then, so spending a lot of time under fluorescent lights staring at computer screens. Easy triggers. Still, it was never anything that drinking a coke or maybe taking some Excedrin couldn’t cure. Even the really awful one I got back in 2003 that started as I was driving home from a rehearsal. The lights on the highway were total agony and by the time I reached my apartment, I had to climb up the stairs on my hands and knees because I couldn’t stand. I crawled into the bathroom and threw up, then took some Excedrin and went to sleep. I still felt pretty lousy the next day, but went to my internship with a pharmaceutical company anyway, having taken two Excedrin before leaving the house and drinking at least two Cokes during the day. To say I had the shakes would be an understatement! But it was tech week, so off to rehearsal I went and everything was fine by the next day.
Such simpler times.
My daughter was born in 2006 and that’s when things started to get a little trickier. The migraines started to become a pretty standard part of my monthly cycle – usually hitting about a week before my period was due. Still generally nothing that the drugs or the caffeine couldn’t take care of, even the one when she was about three that was much like the 2003 one. She watched a lot of Dora that day and I remember crawling to the kitchen to cook her a frozen pizza. My husband was traveling. Real parenting win for both of us!
Still – severe ones very rare.
I’d say they really started ramping up about five years ago. I was quite sure it was tied to my hormones and the fun of perimenopause. But they were no longer just once a month. They were still somewhat tied to my cycle but there were also a lot more rogue headaches happening. And I couldn’t find a consistent trigger. They would happen when I got my period, when I was ovulating, when someone sneezed in the next town over. When I ate chocolate, when I didn’t eat chocolate. When the weather was good, when the weather was bad. When I hadn’t gotten enough sleep, when I’d gotten plenty of sleep. I kept food journals galore. I was introduced to Imitrex around this time and also started seeing a neurologist. She was not a believer in food triggers or in the value of the food journal (the entire internet would beg to differ, it seems), so I stopped doing that. She was, however, a big proponent of preventive meds, so we started that.
(anecdote is not data)
First up was plain old magnesium, which I had tried before, but to no success. We added vitamin B2 as well as butterbur and feverfew. It didn’t work and those last two were hell on my stomach. Next up was the blood pressure meds, propranolol (brand name Inderal). That didn’t work either and I already have pretty low blood pressure. There was only so high she could go on the dosage before, as she said, I wouldn’t be able to stand up. Then came the Topamax. That’s a drug for seizures, but also approved for migraines. Some of the listed side effects for Topamax are confusion, or trouble talking, concentrating, or remembering. I’ll say! I was so spacey on this drug. I couldn't remember the words for anything and one day I drove right past our own neighborhood. My daughter gently informed me what I had done and I immediately started weaning myself off the drug. It wasn’t preventing the headaches anyway.
(anecdote is not data)
(anecdote is not data)
(this is MY personal experience – Topamax works great for lots of people. I even know some of them. I am glad it works for them)
After Topamax came Namenda. This is a drug meant to treat Alzheimer’s. I don’t remember much about it except that, like all the others, it didn’t work. I think it was at that point that the neurologist said she had nothing else for me (it was three month trials on each attempt, so we'd been doing this for a while!) other than anti-depressants. I had heard about Botox, but we didn’t go there. So I was on my own to figure things out. Which meant back to trying to figure out food triggers.
Oh, the food triggers.
I read a book called “Heal Your Headache – the 1-2-3 Approach for Taking Charge of Your Pain” by David Bucholz where he outlines something called the Migraine Diet. I tried to follow it. I cut out the bananas and the avocados. I obsessed about tyramine and nitrates and MSG. I carried around lists of food and drove my family nuts. It didn’t work.
(this is MY personal experience – judging from the internet, this plan works for lots of people and I am happy for them)
Oh, the food triggers.
I read a book called “Heal Your Headache – the 1-2-3 Approach for Taking Charge of Your Pain” by David Bucholz where he outlines something called the Migraine Diet. I tried to follow it. I cut out the bananas and the avocados. I obsessed about tyramine and nitrates and MSG. I carried around lists of food and drove my family nuts. It didn’t work.
(this is MY personal experience – judging from the internet, this plan works for lots of people and I am happy for them)
I tried FODMAPS. I tried gluten free. I tried dairy free. I gave up sugar for a month. Various foods became suspect at different times: eggs, turkey, chocolate, apples, pears, strawberries, seafood, nightshades. And none of it worked and it mostly just drove me insane to the point where I would just say “fuck it” and have a chocolate chip cookie.
Or twenty.
I attempted to go completely vegan for a month in January 2016. I only lasted nine days, sad to say. I can’t eat nuts, so that left beans as my only source of protein…and let’s face it, sometimes you just don’t want to eat any more beans! Plus I felt absolutely miserable the entire time. Headaches, no energy, unhappy. My journal entries from those nine days are just day after day of misery. Day 10 we went to Red Robin and I had a turkey burger that was like heaven.
(this is MY personal experience – I have lots of vegan friends. They are very happy eating this way and I am happy for them)
Or twenty.
I attempted to go completely vegan for a month in January 2016. I only lasted nine days, sad to say. I can’t eat nuts, so that left beans as my only source of protein…and let’s face it, sometimes you just don’t want to eat any more beans! Plus I felt absolutely miserable the entire time. Headaches, no energy, unhappy. My journal entries from those nine days are just day after day of misery. Day 10 we went to Red Robin and I had a turkey burger that was like heaven.
(this is MY personal experience – I have lots of vegan friends. They are very happy eating this way and I am happy for them)
Somewhere during that time, I also read a book called “Why We Get Fat” by Gary Taubes. I heard about it from Gretchen Rubin on her Happiness podcast. He basically advocates a low carb, high protein diet (pretty Paleo) that Gretchen follows. I wasn’t ready to fully embrace a carb-less lifestyle, so I tried cutting down on refined carbs and white bread/rice/pasta, focusing on whole wheat versions instead. Nothing.
By February I was suspicious of everything that went in my mouth – again. So instead I turned my focus on my hormones. I tried to resign myself to the fact that none of this was in my control. As I wrote in my journal:
I talked to my gynecologist and she recommended Estroven. Or an antidepressant. I chose the former, but it did – say it with me! – nothing. So I tried a different medical practice, one with more focus on older women and less on babies. I met with a nurse practitioner and she spent a long time with me talking about perimenopause and various options for treatment. I liked her because she validated my experiences and actually listened to me, unlike my gyno. Her solution to the problem was a nuvaring and estrogen patches to use on the off week.
Nightmare.
By February I was suspicious of everything that went in my mouth – again. So instead I turned my focus on my hormones. I tried to resign myself to the fact that none of this was in my control. As I wrote in my journal:
No matter what I eat or don’t eat, no matter how hard I agonize, no matter how much time I spend documenting every twinge of a headache and every morsel that goes into my mouth – I am going to get headaches. I am going to get them right before my period. I am going to get them around when I ovulate. I am going to get them randomly at other times of the month depending on what my hormones are doing. And I can’t control any of that. So I should stop trying.
This is not an easy decision to come to. Or one that I am certain I can abide by. What about the fact that I drank some red wine on Saturday night and then had horrible night sweats and a migraine on Sunday? Surely they must be connected. Sure – it seems reasonable. Until I remember all the other times I have had night sweats and migraines that I DIDN’T have wine. Or eggs. Or potatoes. Or chocolate. Or avocado. Or whatever my demon of choice is that day. Because none of that is the answer. The answer is that I am 46 years old and in perimenopause. That’s it. I am sure there are some simple steps I can take to try to control some of the basic symptoms, but they aren’t going to go away just because I eat more veggies or start drinking soy milk (which WILL bring on the acne, so no thank you). They are part of what my body is doing right now and it sucks (intelligent design, my ass, as I have said many times).
I talked to my gynecologist and she recommended Estroven. Or an antidepressant. I chose the former, but it did – say it with me! – nothing. So I tried a different medical practice, one with more focus on older women and less on babies. I met with a nurse practitioner and she spent a long time with me talking about perimenopause and various options for treatment. I liked her because she validated my experiences and actually listened to me, unlike my gyno. Her solution to the problem was a nuvaring and estrogen patches to use on the off week.
Nightmare.
Mood swings, intense night sweats, migraines, spotting. I gave it three cycles and then stopped (just curious here - does anyone know WHY three months is the standard time for everything? Is there soe data that backs this up or did the medical community just collectively agree it sounded good?). During that time, according to my journal anyway, I subsisted on massive doses of Advil and lots of Coke and/or Pepsi (for the record, I prefer Coke. Pepsi sucks). All that estrogen was bad, bad, bad. And even in the midst of that, I continued to obsess about what I had eaten and what the trigger might be. The nurse practitioner, like the neurologist, had nothing else for me at that point and suggested I start going the more alternative route. She recommended a more “holistic” practice, one of those functional medicine places.
So I made an appointment there. I also started seeing a chiropractor. This was all very hard for me to do, to put aside my skepticism and suspend my disbelief, but at that point I was willing to do just about anything. I even started reading about ayurveda. Apparently, I am mainly pitta (heat) or maybe pitta vata. Because, you know, pseudoscience. I also eventually ended up doing acupuncture and cupping. Cupping, for crying out loud! And I went through a phase of being afraid of histamines in food.
Sigh…
The functional medicine place was an adventure in things like testosterone cream, digestive enzymes, adrenal fatigue, and some food sensitivity tests that I am STILL fighting with my insurance company over. They were lovely people in the office, but...not my style and it didn’t work anyway.
(this is MY personal experience. Functional medicine has been wonderful for some people. Good on them.)
This all ended around fall of 2016 and I stopped writing in my journal until now, which is unfortunate. I do know the next step I took was to call the neurologist in January of 2017 and ask for the antidepressants. It was the only thing out there that I hadn’t tried that she was still recommending.
This all ended around fall of 2016 and I stopped writing in my journal until now, which is unfortunate. I do know the next step I took was to call the neurologist in January of 2017 and ask for the antidepressants. It was the only thing out there that I hadn’t tried that she was still recommending.
Ah, Effexor.
Getting adjusted to the drug was rough, as I recall. It made me very nauseous at the outset. I remember meditating one morning (as I was working through my January challenge of getting up early to meditate every morning, eventually working up to an hour each day – it was great) and suddenly having this massive wave of nausea. I was proud of myself for being able to focus on the sensation and breathe my way through it. But it doesn’t mean it was fun.
Getting adjusted to the drug was rough, as I recall. It made me very nauseous at the outset. I remember meditating one morning (as I was working through my January challenge of getting up early to meditate every morning, eventually working up to an hour each day – it was great) and suddenly having this massive wave of nausea. I was proud of myself for being able to focus on the sensation and breathe my way through it. But it doesn’t mean it was fun.
However, as the weeks went on, there was no change in the migraines. I got used to being on medication, but I started to feel like I was watching everything in my life from something of a remove. Like I wasn’t fully engaged in life. Plus I would have these flares of temper that were yucky. And still the headaches. And night sweats.
(this is MY personal experience. Lots of people have great experiences - life changing experiences on anti-depressants - and that is wonderful. They are a great tool. Just not for me)
Then we went to Hawaii for spring break. Hawaii was awesome. We stayed on the Big Island and I would go back in a heartbeat. Live there if I could. The resort we were at was very expensive, so we couldn’t eat at the restaurants there all the time and therefore bought some breakfast food to have in our room. One morning, I was about halfway through my usual oatmeal and suddenly I just didn’t want it. My taste for it was gone. Just gone. It was weird. And it got me thinking about the other times on the trip that I hadn’t felt great or had even gotten a migraine and they were all mornings when I had had oatmeal.
So when we got back, I gave up all grains. Not just gluten, not just oatmeal. All of them. The rice, the corn, the quinoa (which is actually a seed, so I’d figured out a long time ago I couldn’t eat it). And when I went back through my journal, I saw various times of suspecting all of those things and complaining of things like how popcorn made me feel so bloated. I told myself it would be 30 days. And it was. And for 30 days, I had no headaches. None. It was amazing.
(anecdote is not data)
On day 31, we went to a museum and had lunch at the restaurant on site. My salad came with a biscuit. I ate the biscuit, curious to see what would happen. Within about 15 minutes, my tongue felt a bit fuzzy and the back of my throat felt scratchy. Within an hour, I could feel that heaviness at the base of my skull that usually heralds a migraine for me. I also got the yawns, which is another of my prodrome symptoms. I avoided grains for the rest of the day and the headache never materialized. The next morning, I decided to continue the experiment and had my old friend oatmeal for breakfast. And by afternoon, I had a full on throbbing migraine. It was crazy.
I had been wondering during that delightful 30 days whether it was truly the grains being out of my life or if the Effexor had suddenly finally kicked it. That seemed like too big of a coincidence and my little grain test proved me right. So I emailed my neurologist and asked her how to get off it. She said to take it every other day for 10 days (so five more doses) and then stop. Which I did. And it was 10 days of pure hell.
(anecdote is not data)
If you google Effexor withdrawal (and I highly recommend that you do), you can read scads of horror stories about people trying to come off this drug. Stories I wish I’d read before ever going on it. Compared to these people, my withdrawal was mild as I hadn’t been on it that long and my dose was fairly low (75mg). Some people had been on it for years at doses up to 300 mg per day. Yikes! Still, even my little experience was not something I would like to repeat every. I was dizzy, crazy dizzy, so dizzy I started taking Dramamine. I would have incredibly scary dreams that would go on ALL NIGHT. 8 hours or so of terrifying dreams. When I would finally wake up, I would be drenched in sweat. Just dripping. It was disgusting. I would go through this every other day as the symptoms would abate on the days I took my dose. People online recommended high doses of fish oil and vitamin B, so I did that. I don’t know if it helped or not. The worst came at the end when I finished the 10 days and had to go two days in a row with no meds. I could barely stand up. We went to an event at our daughter’s school and when it was over, I had to lie down and just sleep for another couple of hours. I debated taking another Effexor, but realized that would only delay the inevitable. At some point, I would have to just white knuckle my way through this, so I did.
Since then, I have felt much better. About a month after the first grain experiment, I had another one, this time inadvertently. We had gone to a basketball game downtown and if you think living grain free in regular life is challenging, try going to a professional sporting event and finding something to eat! You can’t bring in your own food and pretty much everything is fried or on a bun. I opted for a grilled chicken sandwich and I just took the chicken, lettuce, and tomato off the bun. This involved a little bit of scraping mushy bread bits off the chicken, but it wasn’t too bad and the chicken was actually pretty tasty. It also came with fries, which I figured would be fine. Yeah, no. Many fries are actually coated in some kind of gluten/breading to give them extra texture and flavor and this delicious batch was one of them (way to let people know that, Banker’s Life Fieldhouse!). It was the exact same sequence as that biscuit – the fuzzy tongue, slightly scratchy throat, yawns, heaviness in the back of the head. Again, it didn’t develop into anything, but I also didn’t have any other grains after that mistake. So I take it as additional confirmation that grains are not my friend.
And that is where things stand now.
And that is where things stand now.
Almost.
During that second month, I also started cutting back on my dairy consumption and noticed that my sugar intake had gone way down (take out the grains, it's a lot harder to eat a lot of sugar. Unless it's ice cream. I love ice cream). So I have decided to go ahead and do a Whole30 and cut out lots of other things and see how I feel. I started the program on Monday and am now on Day Five. I will blog about it all at some future date, but I think this is good for now.
No comments:
Post a Comment