Friday, February 27, 2009

Objective Perspectives and Labels

This pain in my head is different than any other pain I've ever had. I don't know if all chronic pain sufferers feel like this, or if it's just a common theme with migraine/headache people, but there is a nagging voice that is constantly telling me that I might be faking, or blowing this all out of proportion. It's not like my knee pain, that comes and goes and has a valid origin (youthful exuberance can be damaging to your joints), or my back pain, which is almost chronic but at such a low level I can ignore it 90% of the time. I have a headache every day, but when it's not totally debilitating I find myself wondering if it ever was. I can remember having days in which I just can't get off the couch, but maybe I was just being lazy. I can also recall having crying fits because my head hurt so bad and regretting it because any emotion makes it pound like a bass drum. But, I could have been PMSy.

It enrages me when someone else tries to minimize my pain or emotions or opinions or whatever. So, why do I do it to myself?

I just mocked up a calendar on a notepad, referenced my headache journal I've been keeping and filled in about 30 days of my pain ranges, highs and lows. Nothing too complicated, just a visual aid to give me an objective perspective on what's going on up there.

I've had a headache every day. I broke down the statistics, cause that's what I do, and I had no days when my pain level stayed down to a 0 or 1. I only had one day that stayed down to a 2. I had 11 days at a 3, 15 days at a 4 and 4 days at 5.

Pain level = # of days

0 = none
1 = none
2 = 1 day
3 = 11 days
4 = 15 days
5 = 4 days

I'm not sure how much sense this all makes, since I am typing through a 3-4 right now. But hey, migrainous blogging could be helpful in it's own right. Unfortunately there is no way to convey how many times I have to rewrite a sentence to make sure it is intelligible. (At least once.)

I don't consider myself diagnosed. My neurologist told me on various separate occasions that I had atypical migraines, tension headaches, chronic daily headache and that he had no idea what was wrong with me. I hesitate to call myself a migraineur. I feel like I may be labeling myself incorrectly and that's unacceptable. If someone asks me what's wrong with my head, I usually say I have a chronic headache. If they ask if it's migraines I, until recently, would say no or maybe. This generally led to a lot of pointless conversations in which I tried to explain what was going on with me and ended up with a headache for my trouble. I now usually just say that it's chronic migraines. Most people know what that is and don't ask too many more questions.

What it's called is becoming less important. I'm still researching obsessively to find treatments and therapies, but I'm focusing more on the symptoms.

Wednesday, February 25, 2009


Some quotes from my personal journal that I deem relevant to the migraine/chronic pain experience:

"I feel guilty and embarrassed every day. I can't clean my house. I can't find a job. Laundry, feeding myself (as minimal effort as possible. maybe a couple slices of cheese for dinner?), and washing the dog are all I can handle sometimes. For weeks at a time.

"When I see friends and family, I feel like they are regarding me warily, as if they are looking for evidence of my illness, some kind of proof. They ask me how I'm doing and I usually respond: good, fine or I'm alright, with as much cheer in my voice as I can force. "How are you" are my three most hated words right now. I just don't want to get into it most of the time. It's depressing. And if I'm out, being social, I don't want to be reminded of the big bad thing in my head that will send me back to my prison of a house sooner rather than later. Cause either it's already here and making me miserable behind the fake smile, or it's on its way and I can hear the hoofbeats in the distance."

"I cope as well as I can. I turn down as few invitations as possible. Which is kind of self-defeating cause I save up all of my spoons for a week just so I can be social for a few hours."

"Just getting dressed and taking a shower is too much for some days. I don't want to tell anyone that. Embarrassed. ashamed. guilty."


"I understand how this could be frustrating to have to just take someone's word for it that they are sick, with no visual manifestations to prove it. But why??? Why would I fake it? Disassociating from reality is not at all what I had in mind for my life. I want to be out there, going to the beach, taking a class, working, being productive. I want to be active. All this weight I've put on? Not my favorite. Having a disgusting house I can't show anyone? Humiliating. Amount of control I have over these things? None. At. All."

"I forget day-to-day how bad it gets. Maybe it's a survival thing the brain does to keep you from getting too depressed about the horror that is your life. If I didn't keep a headache diary I might not believe myself. Actually, sometimes, I don't anyway."


"The sun is coming up and starting to shine through the bedroom window. abandon bed! abandon bed! heh."


I think it's very important to have a life separate from my headaches. They may always be there, and they may hinder most of my life, but I am determined to have some parts remain as unaffected as I can. Besides, if don't distract myself, I'll lose my mind sitting at home all day.

I have a small plant window, filled with green. Watering my plants, checking them for unhealthy spots, speculating which needs a bigger pot and which could use a good trimming. Even if I ignore them for a few days, they remain lush and alive, cleaning the air and giving me a sense of accomplishment in even my bleakest hours. I've kept them alive. Their soil is damp and rich, their leaves are the loveliest shades of green. I have purposely purchased the heartiest of the indoor plants (a ficus, some spider plants, a cactus) to avoid the disappointment of death. I am not always reliable, so I make sure my plants can survive a little neglect. Also, I purchase them at Orchard Supply Hardware because they exchange dead plants, no questions.

My dog is a constant source of entertainment and comfort. She cuddles with me when I don't feel well and walks with me when I do. She can get me to play with her even when my head is awful, a few minutes of smiling and being silly is worth the pounding punishment that follows. I've enjoyed training her from the first moment she came into our lives, and continue to, just less adamantly since my headaches started. She knows her basic commands, and we have a general rapport. She obeys. I am the pack leader, despite my disability. Cesar Milan would be proud. It makes me proud of myself, which can sometimes be difficult. I'm grateful and lucky to have her.

I want to start doing more home crafty things, like knitting and quilting. I've been hesitant for a few reasons, financial investments and general intimidation being the two biggest. Cooking has always been fun for me, but it can be physically tiring which will, of course, trigger a migraine.

I read when my head allows it. Books have always provided an escape from painful realities, emotional and physical. I can get absorbed by a good story, completely swallowed up and I have little awareness of anything else but the written word and where it is taking my imagination. However, sometimes reading triggers a headache, so I can't always escape into a book.

I watch a lot of television. I try to watch shows with substance, education based documentaries and intellectually charged dramas. I do indulge in some serious mind-melting frivolity, though. I love America's Next Top Model and Top Chef, I keep watching Ugly Betty, even though half the characters irritate me (possible trigger!), and I occasionally zone out on whatever happens to be on, infomercial or foreign language soap opera, it matters not. All that matters sometimes is getting my mind off the pain in my head. If I am having an earplug day I turn on the captions.

I have a few good friends and family that I see regularly. I make sure I leave the house once a week, whether I feel good or not, otherwise I start feeling like a crazy hermit. The warmth of the sun and the tickle of a breeze feel foreign and surreal when you don't leave the house for a while.

I surf the internet. I am constantly googling a number of headache related buzzwords and phrases, I have several blogs and medical websites I frequent that address migraine and headache issues, and of course, I blog about it here and in my private journal. I also check out possible employment opportunities (part time, telecommuting? Anyone?) on craigslist and read about the news and entertainment gossip, to keep myself connected with the outside world. I email. It happens to be my favorite form of communication. Like letters, but more instant.

I'm really wanting to take classes, for college credit or fun, but I don't feel ready to commit. Just getting all of my disability situation straightened out is taking most of my focus, and I'm not even moving that fast on it. It makes me sad to think about how limited I am, so I try not to. Maybe not the best way of coping, but it's all I've got for now. Ignoring what is too horrible and dealing with what I can.


Triggers are the most frustrating part of this whole experience. They're worse than the pain, the neurological symptoms and the loss of IQ points. They suggest that I could, if I really wanted to, control my pain. If I avoid bananas and chocolate and MSG, I'll be fine. Or maybe it's gluten and citrus. I'm painfully aware of a few triggers that are somewhat unavoidable; sound, light, scent and activity. The only way I can control these is by not leaving my house. It works, but it gets lonely.

If I go out to dinner with a friend and someone sits behind me wearing cologne, I'm done for the night within an hour. If the television is competing with music from the next room, I am being tortured, my ears ringing as if the space shuttle had just launched, headache immediate. I get a little warning before an activity induced headache sets in. When I perform an offensive action, whether it be laughing too loud or jumping up and down, I get a sudden burst of pain in my head that subsides within seconds, then slowly comes back on over the course of an hour or so. The worst, however, is going to my doctor's office and twitching in pain under the fluorescent lights. You'd think a neurologist would know better.

To cope with these known triggers I bring earplugs with me everywhere and use them as often as possible, and I wear sunglasses as much as I can without feeling like a freak. I try to control my responses, not cackling like a mad person or dancing wildly. It makes me sad to dampen down my personality. Less pain, though, I would do anything for less pain.

On the bright side of the bleak situation, I am learning to control and anticipate my environment more. I am becoming quieter and more reflective, more introspective and appreciative of subtle moments. I'm not suppressing my enthusiasm for life, just how much I show it. One day, I'll be able to let it out again, with my old child-like abandon.

The System

The American Government is equipped to assist those with disabilities. They offer a monthly stipend, which may or may not actually be enough to survive. They provide medical care, limited but positively better than nothing. I can even get a placard to make public parking easier. Unfortunately the system doesn't have much in place to assist those whose disability impairs them from using the system. That is, reading and understanding fine print, making my way out of the house to sit in the bright, loud local office for a few hours, even just sitting on hold with a condescending and occasionally loud-as-hell automated representative tends to end with me crying and frustrated.

I'm learning, though. I now have a list anytime I need to have a conversation with a worker so i don't forget anything. I also write down any important information to make sure I remember it all and that it makes sense to me. If I get emotional, I apologize and ask for a minute to compose myself. They are really understanding, usually. If all else fails, I leave/call back/ask for help without feeling shame. I refuse to let myself feel shame for having this weakness. Shame is self-destructive and a waste of time. I still feel it, but my logical side is relentless, even in the face of irrational and pain-driven emotions.

It's taking me a lot longer to get all of my benefits than it would have if I was healthy, but if I was healthy... Yeah. So, I continue on, feeling like the hare burdened by the tortoise's shell, or like Charlie in Flowers for Algernon towards the end, painfully aware of his disabilities. I'll get it right eventually, it just takes time, patience and perseverance.

Tuesday, February 24, 2009

Symptoms and Treatments

I am back at the beginning, doctor wise. I have to start all over and I am really dreading it. I am not the ideal patient, with my chronic illness that doesn't respond to traditional treatments and my aversion to pharmaceuticals. I want to explore using alternative therapies. I am open to pills as long as there is a basis for trying it out and the possible side effects are understood by all. I have a list of treatments and therapies I want to try and it's very important to me that I have a doctor who is more knowledgeable than I am.

I am thinking of writing a proposal, summarizing my health and my needs, and faxing it to every doctor in the south bay. It could open the perfect door or it could slam them all closed. Maybe an e-mail would be better? With a link to this blog. Faxing is so 1985.

The symptoms that worry me the most are the stroke-like ones. I don't have any paralysis so I am not actually afraid that I am having a stroke, but the slow-thinking, memory loss, confusion, trouble speaking clearly and motor sloppiness make me very nervous. I feel like I am drunk, or on some heavy duty narcotics. It can precede or coincide with a migraine. When this happens, I sit or lay down. Avoid stress, noise, harsh lights. Maybe talk quietly or watch a movie. There is nothing I can do but ride it out. It always disappears after a few hours, maximum.

Less frightening, but still annoying, symptoms include head tenderness, aura, and nausea. The head tenderness is very strange. There are myofascial pressure points on the face and head and whenever I touch mine, and often when I don't, they ache. Massaging the most sensitive areas of my head can give me some temporary relief, like a back massage will for a pulled muscle. An ice pack on my head can be soothing, too.

The aura I see before and sometimes during a migraine varies. Sometimes I see floaters in my peripheral vision or blind spots. I've lost a whole section of vision during a migraine. Lights will have halos. Sometimes everything has a halo. If I close my eyes during a migraine I see shapes and colors flowing like oil and water and fireworks throwing sparks, like an acid trip. I see movement just out of my direct line of sight quite frequently, regardless of head pain.

The nausea has never actually resulted in vomiting. I just feel carsick. Since the headaches started, I have suddenly started having trouble with motion sickness in general, not just when I have or am getting a headache, which I have never had. The carsick feeling can be triggered by the television, too. I treat the nausea with ginger tea and water. Saltines if necessary.

I have a horrible urge to binge eat when my head gets bad and no matter how much I eat, I never feel full. I don't usually feel hunger at all when I have a headache, but the munchies are irresistible. I kind of zone out sometimes and end up eating on autopilot and I'll find myself eating a sandwich or cookies without paying attention to what I'm doing. I haven't noticed that eating makes the headache worse, and may actually make it somewhat better.

I have been experiencing phantom sensations of heat and moisture, and I frequently smell poo when no one else does.

The memory loss is pretty disturbing. Usually it's just a problem with recalling words or repeating myself, but I have forgotten entire conversations.

I am doing my best to improve my quality of life. It's frustrating that my best weapon is an icepack, but it's more effective than nothing. It could be worse.


I've been keeping the daily. detailed diary (alliteration!) that is suggestion by so many chronic pain sufferers, particularly those with migraine. I was reluctant. My last headache journal stopped after two weeks. I didn't like thinking about my headaches so much. I invented a code of abbreviations and symbols to try and control the process as much a possible, to make the writing of it as succinct as possible. But I made it harder on myself. When had a headache, it was hard to articulate what was happening. I couldn't remember any of my codes and would get myself confused trying to remember everything and package it in this complicated little box of explanation I had created for myself. It was frustrating and self-defeating, so I gave it up.

I've started a new one. This one is more freeform. I just write what seems important at the time and try to fill in any blanks as i go along. Sometimes it's a page long (in a small notebook) and sometimes it's just a number. I do at least one entry per day. It's been successful so far. I don't feel like I'm dwelling but I have something I can coherently reference. I've kept the pain chart I made for myself. Doctors always ask what pain level I'm experiencing but I have a hard time assigning my pain a number, until I saw a chart that was made for children, with faces that express the emotion that the pain causes. 0 was smiling, and 10 was screaming. Then, it clicked in my head and I created my own version, which is easy for me to reference even when my aura has me feeling like a stroke victim.

0: no pain
1: background pain
2: ignorable pain
3: distracting pain
4: disorienting pain
5: incapacitating pain

This has been the key, making the pain and its analysis my own. It gives me that feeling of control without me getting frustrated if I don't have the ability to write for five minutes about whether my headache is sh/st leye or ach ao (shooting/stabbing in my left eye or aching all over). Also, I am making notes on everything I am exposed to that could be a trigger, hoping for a common theme I haven't caught on to yet.

So far, I haven't found any connections between food and my head. The major connections seem to be between activity and sleep. The sleep I've got down, I just get as much as possible. Too much sleep can cause a headache, but I rarely sleep too much. Activity has been the most frequent and obvious trigger. I can't talk, listen, laugh, run, jump, or even walk briskly without ending up disoriented and in pain within hours. It's worth it for a good conversation or for a little fun. But not every day. So reclusiveness is where I've ended up. Neglecting my loved ones and holing up in my messy little house.

I'm maintaining positivity, no matter how depressing it all can seem. I am making plans and having ideas. Having a headache all the time has really forced me to stand still for a minute and evaluate myself, my life, all life, and the point of it all, or what i want the point of it all to be. Silver linings.

Sunday, February 15, 2009

My headaches; a biography

They are ever-changing, however subtly. Though sometimes it was hard to tell the difference between a symptom and a side effect from all of the medication I've tried.

When they first started, during the shingles, it was a tension-type headache that wouldn't go away. The OTC meds I tried really didn't do anything other than give me the illusion of control. My headache ranged from mild to moderate in the early days. Over the course of those first six months the headache got worse and worse, either a natural progression or a consequence of the OTCs, I don't know for sure. There is a small part of me that feels responsible for ending up a non-productive member of society. Maybe I gave myself rebound headaches and that was the catalyst for how bad it would get. Or maybe my head was already on a natural progression and nothing I have done or will do can change anything. Either way, not reassuring.

So, my head got worse. I was distracted and in pain at work. I pushed through, but talking on the phone all day and staring at a computer screen were probably the two worst things I could have done for my head. I started making mistakes, small ones, but eventually big enough that management noticed. Realizing that mistakes were being made as a result of my headaches, I started calling in sick more frequently. I was afraid of making more mistakes that could compromise the business and that they would let me go.

Calling in sick all the time was another issue, however. Even with a doctor's note to verify I had been out legitimately, I ended up getting written up. This straw broke my back and I decided to take some time off.

Two weeks was the plan. I would take two weeks off, sleep and see a neurologist. Hopefully this would reset my head somehow and I could go back to normal. I went off the OTCs and my head freaked out. The rebound headache. It was torture. I cried all the time. I was dizzy, disoriented, my head hurt more than I thought it could and I felt hopeless. Then I saw the neurologist, he gave me the advice to take care of myself and that clicked something in me.

I hadn't been taking care of myself at all. I'd been ignoring my head, making it worse. I'd go to work for 10-12 hours a day, pop the max dosages of ibuprofen and tylenol and naproxen, with a garnish of excedrin and a gallon of coffee, come home exhausted and strung out from trying so hard to act normal with chronic pain. I'd sleep, get up the next day and start it again.

So, when I finally started paying attention, it kicked me in the head. Kinda literally. I could hardly move for weeks, months, I'm not sure.

The rebound headache faded but my head is still angry and hardly lets me out of the house.

My headaches, from what I've read on the interweb (since my last doctor never committed to a diagnosis, I have self-diagnosed as revenge), are tension-type chronic headaches with a weekly-ish migraine, with or without aura! Exciting!

My most recent symptoms may have been overlooked previously because I was on so many medications for so long. I now have these stroke-like symptoms, which terrify me. My words are slurry, I'm confused and disoriented, my memory is spotty, and I can't remember words or understand what people are saying. It's only temporary and usually precedes a migraine, though sometimes it just pops up for no reason. Just for kicks.

I get dizzy really easily, and motion sick, which was NEVER an issue before the shingles. Phono-, osmo- and photo-sensitivity are daily problems. My head hurts pretty constantly, but infinitely and explosively more so with any exertion, outside triggers or emotional excitement (good or bad).

And that's where I'm at now. 24-7 head aching (and stabbing and throbbing), with 1-2 spikes (through my eyeball(s)/temple(s)) a week.

(I like parentheses.(Is it obvious?))


Friday, February 13, 2009

Other People

I have a lot of people in my life, to varying degrees. My significant other would be the most prominent. He has experience with chronic pain himself, so he understands all too well what I'm going through. He listens and gets me ice packs and tries his best not to get impatient with me when I can't leave the house for days. He takes me to doctor appointments, fetches my prescriptions and makes sure I take meds on time. He talks to the Disability Machine when I don't have the strength. He is completely taken for granted and I am really lucky to have someone with me who cares and tries to make it easier for me.

The rest of the world is harder to deal with. Friends and family all tend to expect a certain person to arrive at their door, but I'm not sure that she is me anymore. She was loud and rambunctious and silly and clever and mouthy. Now my headaches dominate my personality, making me quiet and withdrawn. I hardly ever go out anymore. I see my good friends rarely more than once a week, my parents once a week and the rest of my rather large family once a month or two. And this social life is killing me.

It reminds me of spoon theory. Click if you want the exact version, otherwise here is my paraphrase. A woman with a chronic illness is trying to explain to a friend what it's like to be sick and disabled. They happened to be at a diner, so she gave her a handful of spoons. She told her, "Imagine these spoons each represent one activity you can do any given day. Most people have an unlimited amount of spoons for each day, but with chronic pain, illness and disability, you have limitations. You are holding twelve spoons, what are you going to use them for today?" Then she goes on to explain how just making breakfast costs a spoon and showering is another one. The friend is amazed and sympathetic by the end of the story when she has no spoons and she hasn't made it to dinner yet. It's a little trite and simplified, but the point is valid.

I go to a family function and that takes up all my spoons. I spend a few hours with a friend, just talking, and I end up going home exhausted and in pain. It's not that I don't want to be with people, I do and that's why I put myself through the pain. I think the main problem is me. I don't know how to ask for what I need without feeling like I am weak, sad and pitiful. Asking other people to change their behavior for my comfort seems so assuming to me, but on the other hand, if someone really wants to spend time with me, I suppose they should respect my limitations.

An example of this problem: I'm still trying to figure out how to ask someone to turn down their own TV, repeatedly, without feeling like a jerk. I shouldn't feel that way, I know. As I type this, the logic fairies in my head are going, "Wtf? Just ask nicely." But the looks I get, and the sighs. My instinct at that point is usually to stand up and walk out, but then I'm considered moody or bitchy and someone follows me around asking, "Are you ok?" until I cry. I hate being a complainer, especially a repetitive complainer, so I usually get to the point, mentally, where I feel like if someone knows that noise or smells or whatever trigger headaches for me, that if they are disregarding that and bringing triggers into my environment, well they must not care. Which isn't fair to anyone, but...

Pain + Constant Triggers - Understanding from Others = Suck

I'm lucky that I have so many people around me who care, regardless of how suddenly I leave a room or how many times I cancel on them. But, you know those people I am so lucky to have? Those people who are able-bodied and minded, who can listen to music at any level without repercussions, the people who think its funny to grab me by the waist and tickle me in good fun, or who splash on their aftershave generously without a second thought of seeing me later in the day? I could throttle them.


I've had a headache for almost two years. I don't talk to my friends and family about it much. It's too technical and depressing and complicated and dramatic and painful. And I'm not much of a shrink person. I just prefer to work things out on my own if I can. So, I thought I would start blogging the stories behind this. My adventures in Migraine Town. Then I decided I wanted to make it public, because reading other people's blogs about their own chronic headache issues has been very helpful. So, here is my attempt to pay it forward. I hope I help someone.

On to it.

One night in March or April of 2007, I got out of a hot shower to discover a mild flare-up of hives on my back, butt, thighs and hands. I hadn't had hives in years. I examined them worriedly for a minute, then went to bed, as there was nothing I could ever really do about them, but develop the willpower not to scratch. So, I didn't scratch, went to bed and by morning they were gone, except for one spot on my back and one under my right breast. "Huh," I thought to myself, "Hives have never done this before, maybe they are bug bites." I was unnerved to think of a spider chowing down on me repeatedly while I slept, but when I put on my bra in getting ready for work, I realized that both of the itchy, inflamed spots were directly under the band. Was I wearing dirty bras? Gross! But I had never had a pimple that hurt and itched like these did. I put a couple of bandaids on them, adjusted the bra as best as I could and went to work.

I shifted and squirmed in my seat all morning, not wanting to publicly scratch myself. By lunch, I had given up that facade of decorum and was apologizing to my coworkers for my dramatics of groaning and roaring as I alternately refused to scratch and gave into the urge by wiggling against my chair. Like I said, I had some experience with hives, so I knew never to scratch anything that itched, but this was a super itch. This was the mother of all itches. This itch was so itchy, it was stabbing. It was like a hot, itchy knife was twisting and thrusting into my torso, not enough to kill me, but more than enough to drive me crazy.

It continued for a few days. I live smack dab in the middle of SuckItUp Town, so it didn't occur to me to see a doctor. Even when I was way more tired than usual, and developed a headache that wouldn't go away, I thought it was probably anemia, since I'd had low iron before, and started taking my oft neglected multi-vitamins again. It wasn't until I showed my mom the rash that it occurred to me that it might be something worth addressing. She took one look and immediately diagnosed me with shingles, having had a run-in herself a few years before. I was aghast, but after a little googling, agreed that it was likely, and made an appointment with my doctor.

I went in and they said it was "a probable mild case of shingles". They couldn't make a definite diagnosis because the blisters had already burst and scabbed over and even partially healed. But, they gave me the anti-virals anyway.

The rash was gone after a month or so, but I still felt tired and achy, my head still hurt, and I still had moderate to severe pain on the rash itself. It was the standard shingles experience, but mild. The symptoms faded totally after a few months, except for the headaches. I had a steady supply of ibuprofen, excedrin, naproxen and acetaminophen, per recommendations by my doctor at the time, to cope with the constant throbbing in my head. They said it was perhaps some kind of post-herpatic neuralgia (a residual headache from the shingles). They said if that was the case, it would fade quickly, be patient, and take OTC painkillers at the maximum dosage until it does. It didn't. I went back and they said it was a tension headache. I needed to relax. Here's more ibuprofen.

I plugged on this way for 6 months. The headaches got worse and worse. I had no idea what a rebound headache was. My doctor evidently did not, either.

I started missing a lot of work. I made some mistakes that were critical to the security nature of my job. I was written up. I was afraid I was going to get fired and I was afraid of what was going on in my head. In September of 2007, I told my boss I needed to take a leave of absence. They were surprisingly understanding about it, and supportive. I thought that maybe if I decompressed and slept for a week or two, maybe I could shake off these headaches and start feeling normal again.

I slept. I continued to get worse. I went to a neurologist. He wasn't able to help me with my headaches at all, but he did tell me something that changed my thinking dramatically. I don't remember his exact words, so, paraphrasing: "You need to take care of yourself. Sometimes you have to push through pain, but not all the time. Sometimes you have to be easy on yourself. Work, friends, family... none of it matters if you aren't healthy."

It was then that I went on disability.

I don't remember a lot of that first year. The combination of debilitating pain and drugs have made it all foggy. After I decided that the first neurologist wasn't aggressive enough, we called every other neurologist in the bay area trying to get me in with someone. The first available was Dr. P.

His office was cluttered and dusty. His staff was inefficient, but friendly. Dr. P did seem to have a deep understanding of headaches, (at least, more than I did) and he seemed to have a path of treatment in mind, which was very reassuring to me at the time.

First, he got me off the OTC drugs, recognizing immediately that they weren't helping and were probably making it worse. He prescribed me narcotics to get me over that initial rebound headache. The drugs made me dopey and useless, but when I was awake and coherent, I was crying and in pain, so I welcomed the drug fog when it descended. After a while, (I have no idea how long it took, months?), the pain during consciousness became livable, so I went off the narcotics. But I was back where I started, with a chronic headache that was at best distracting and at worst debilitating.

Dr. P then started prescribing preventatives and abortives of all sorts. He speculated that my headache was an Atypical Migraine. None of the drugs worked. Some of them made me fat. Some made me break out. Some made my headache so much worse I thought I would die. He put me on anti-psychotics, anti-depressants, and anti-seizure meds. I'm not psychotic, depressed or having seizures, but an Atypical Migraine needs Atypical Treatment. Nothing worked. Not even a dent. Dr. P joked that he was a drug dealer. It's not really all that funny looking back.

After about a year of spending all of our money on copays, my body took a stand and informed me I was no longer allowed to put so many pharmaceuticals in it. I became impacted. No one talks about it, but it happens to a lot of people and it's awful. I won't go into detail because a person's relationship with their digestive system is a personal one.

I'd been researching more natural methods of dealing with chronic headache, and pain in general. But when I brought up things like biofeedback or magnesium to Dr. P, he would dismiss my suggestions as folklore or placebo. I assumed he was right, being the doctor and all, and backed down every time. However, I never stopped making suggestions and researching on my own, and it became increasingly obvious that he did not appreciate it and found it to be a waste of time.

At home, I was becoming increasingly obsessed with finding a name for my headache, a category I fit into. I googled all day and night. I found a lot of information about headaches and migraines that my doctor had never mentioned. I started asking more questions about all the drugs he prescribed, their side effects and how they worked. I asked him whether he had heard of new daily chronic headache or would consider giving me a recommendation for medicinal marijuana, since I had read over and over how it was extremely helpful for people in my position. He didn't miss a beat before refusing to recommend pot, and was very condescending about these "new categories" of headache.

With me refusing to be his guinea pig, Dr. P wasn't really doing anything for me anymore, except keeping me stocked in muscle relaxers. So, I started treating myself as much as western medicine allows. I've been smoking marijuana as needed and it's the ONLY thing that makes a headache bearable. It's by no means a cure, because I have the headache no matter what I do, but pot puts me in a better mood and helps postpone migraines the same way the muscle relaxers do.

So, I broke up with Dr. P over the summer. It wasn't going anywhere. I needed to move on. Haha.

I am now taking charge of my headaches. I am currently between insurance carriers, so finding a new doctor will happen soon. But this break in outside treatment has forced me to really get in touch with my triggers, and myself.

I have found that light, noise, smells and stress are triggers. I suppose that should have been fairly obvious from the get go, but I didn't really know anything about migraines before all of this started. I had noticed that these things made my headaches worse, but I didn't really understand the meaning of the word trigger. I suspect there may be food triggers, but I haven't been able to narrow anything down yet, besides caffeine, alcohol and too much sugar.

My current preventative regimen is:

-Sleep 8-10 hours a night, straight through if possible
-Avoid bad lights (bright, blinking, etc), noise (earplugs!), and stress (deep breathing and meditation help)
-Drink water, lots.
-Rest up

My current postponing/dealing regimen is:

-Ice pack on head
-Myofascial, trigger point massage
-Heating pad on back or neck
-Muscle Relaxers
-Tea (Chamomile, lemon, ginger, peppermint)
-Being quiet
-Painkillers (very rare, only when unavoidable)
-Hot shower

I've got more. Lots more. But, I've blogged myself right into a nasty headache. So now I'm done.

Sunday, February 1, 2009


I'm not a doctor. I've seen doctors and will continue to, but so far, the bulk of my knowledge of headache and migraine disorders has come from the internet and books. For better or for worse. This is a compilation of: 1. my own research, the information I've found and the conclusions I've made, 2. my experiences, as subjective as they are and 3. the advice, information and treatments I have received from doctors and non-doctors. I reserve the right to change my mind, add/or retract information (and generally flop about confused as to what the hell is happening to me) about any factor of my illness, it's meaning and relevance at any time. It's all subject to change, isn't it? I've got a headache. Did that make sense?

I am constantly searching. I happen across a wealth of information every day. Sometimes I retain information and regurgitate it here. If I have quoted someone else's work inappropriately or a citation is needed to clarify anything on here, I will fix it and thank you for bringing it to my attention.

I sometimes try out products and services and write about them here. (These posts can be found under the reviews tag.) If I receive compensation or a freebie in relation to a review I write, it will always be stated clearly, and will not affect how I write about the product. My opinion can not be bought.

My comments policy is this: Don't be mean, to me or anyone else (though politely conflicting opinions are always welcome), and don't be spam. Comments within these rules make me happy, I love feedback! Mean or spammy comments are deleted and we think of them no more.

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