Wednesday, September 30, 2009

More Stuff That Happens in my Head

*** This head-related blog post is being interrupted for a few blog-related announcements. *** I have figured out why blogger wouldn't let me comment on my own blog and others and the problem has something to do with embedding the comment form. I've fixed mine, so, now I will stop ignoring you guys, but I still can't comment on other people's embedded comments through blogger. Any suggestions? *** Also, I have added a blogroll to the bottom of my sidebar! Seriously, scroll down a little and check it out. I read some amazing people. Most of them are pain-related, but not all, because it doesn't have to be all about the ouch all the time. Even though it usually is. If you want to be on or off my blogroll, just let me know!*** Now, back to your regularly scheduled head-related blog post. ***

My latest reflections on all the weird symptoms I've experienced:

I've had months-long bouts of nausea, sometimes from motion (Oh! No looking to the left today? Got it.) but usually unprovoked. I haven't vomited at all, I just generally feeling kind of sick. The sea bands I got are about 50/50. Ginger ale has been my best friend. I just hate drinking all that sugar. I'm working on alternatives. Dried ginger? Can I extract my own ginger juice? Do I want to?

The brain skips/twitches/zaps have been happening off and on. I'm googling it as much as I can, and so far, I got squat. It's similar to the feeling of "shooting rockets", or just drifting off to sleep and jerking awake suddenly, except it's only in my head (my body doesn't jerk at all (well, it does, but in unrelated situations, and we'll get to that later)) and I am fully awake and not sleep deprived or tired in any way. Similar reports come from people going through withdrawal from some drugs. I don't even drink caffeine right now. I take a soma about three times a month. I am smoking a fair amount of marijuana, so that could be it. But, when I used to smoke it recreationally, I never had any twitches in my brain. So, maybe not.

I've had a touch of night-time anxiety every now and then. Nothing too bad, but if I don't have my usual items in place (cup of water, phone, fan, etc.), I get a little nervous. I'm not sure where it's coming from, maybe just a little fear that I'll have trouble sleeping. Which is silly, because however unhappy not sleeping makes me, it's really not a frequent problem and I need not worry every night for something that only happens every few weeks or so.

Infrequently, and only with severe and sustained head pain, I have been totally unable to focus my eyes without covering one of them. I can see plainly with one eye, but with two, it's like they are hopelessly crossed.

I've developed a twitch. It seems to correspond with either a high pain level or a sustained, unchanging headache. So, if my pain has been at a steady 8/10 for a few hours, my right shoulder jumps. It's almost always my right shoulder, unless it is restrained in some way, then it jumps to any available body part. I'm pretty sure it's just a weird reaction to the pain, but I'm not sure. Anyone else get this?

I've been reading up on allodynia and central sensitization. I haven't been able to wear my hair in a ponytail since the headaches started. I often feel very physically sensitive otherwise: like a hard chair will be more than just mildly uncomfortable, or fitted clothes feel constricting and suffocating, or I can't stand the feel of movement against my skin, (so, no, you may not stroke my arm, you may only hold it completely still, and if you move I will shove you away involuntarily) because while it's not exactly painful, it does hurt. It's like chinese water torture. Is this allodynia? I'm still not sure.

I'm also unsure if my body's reactions to stimulus (noises being cacophonous, lights causing pain and nausea) are central sensitization, or a natural part of chronic migraines or both. For example, if I am exposed to an irritating noise, like gunfire on a WWII documentary (to pick a totally random example), I can pinpoint the moment it goes from an "irritating noise" to a "trigger". Something changes in my head and don't just hear it anymore as much as feel it, too. It can become a sort of brain overwhelm and if I can't block it out, I descend into pain and tears. It doesn't have to be noise, though, it could be lights, or smell, (Oh god, especially smell!) any stimulus, really. I can't escape it and I'm sure it's getting worse. Evolving migraine? Central sensitization? Part of me worries that it's psychosis. (Part of me worries that everything is psychosis and I'm in my own twisted version of the Matrix. (I have an active, and idle, imagination.))

The pain has been pretty constant. It is persistently gnawing on the back of my head and/or ripping at the sides, and/or throbbing behind my eyes and/or stabbing in my forehead. It often travels down my neck, stiffening my joints and tensing my muscles, making my shoulders rock hard and impervious to massage, and my back tighten up into knots, aching the length of my spine. I respond with ice on my head, heat on my back, muscle relaxers, marijuana and only in times of grave panic, narcotics. Zoning out on television helps, but nothing too sad or violent, because my emotions can go CRAZAZAZY when my head hurts, and any expression of emotion seems to be a trigger lately, so we keep it light.

My MIDAS score is depressing. I recently took it again, for a potential new neuro, and I didn't bother to add it. I know it's 21+, Grade IV, Severe Disability. I don't like to think about it.

My most frustrating trigger right now is exertion. Bending over, climbing stairs, walking at any speed above a dawdle, and even thinking about going outside for a walk result in a horizontal-making headache. I have better days than others, especially since I've been getting my greens in bulk, but my activity level is too low, even on my best days.

I'm starting to become more in tune with my head, my triggers, and my reactions. The experience hasn't been fun, but with the experience comes the knowledge, and my past pain contributes to my present ability to cope.

If only the learning curve wasn't so steep.


Friday, September 25, 2009

Cindy McCain's Migraines and Me

She has given some great interviews. And she says, and I quote, "I’m going to go to Congress... and tell them that it’s time. If you can give five million dollars to study flatulence in cows and its effects on the ozone layer, you can give me some money for migraine research.”

She's turning me on.

It's a glimmer of hope, having a new and powerful advocate. If nothing else, she is educating the masses in a way most of us could never dream. Even if Congress ignores her, she'll still be a hero to me. She's standing up, she's defying the "suck it up" attitude that many migraineurs have been taught/told is the appropriate response and she's making me feel like less of a freak.

You'll probably never read this, but thank you, Cindy, for doing this. It can't be easy. My heart aches with how much it means to me, and for the rest of the migrainous world. Thank you.


Sunday, September 20, 2009

Invisible Illness Week - A Few Thoughts

I wasn't really feeling Invisible Illness Week, you know? Why, exactly, do I need a week to focus even more on what it is to be abnormal. I don't get a present or flowers, like my mom does on Mother's Day. It's more like Black History Month, I guess. *They* set aside a little time annually to basically give an acknowledging nod to a group of people who are repressed, suffering, or otherwise in need of attention that go largely unnoticed for the rest of the year. Yes?

But, I get it, of course. I'm here. I've got the virtual badge and the invisible illness to go with it. My prize is disability payments and occasional scorn from those who have less than a clue about what it is to be less than perfectly functioning.

I have a grandmother-type person in my life who is well aware of my issues. We've talked at length about my migraines, how I treat them and the effect they have on my life. She, herself, has suffered from ailments of mysterious origins, so she had always been sweet and empathetic towards me. Or, so I thought. I learned otherwise when I overheard her telling someone that she doesn't care who has sensitivities to scent, she's going to wear her perfume because she feels prettier with it. She realized a little too late that I was within earshot, and hasn't looked me in the eye or spoken to me since. Is it embarrassment, or a unwillingness to face the consequences of her selfishness? We've never been close, but her intentionally avoiding even saying hello and goodbye at family events is becoming a little obvious. I'm not rushing to reassure her either, because if she's still laying on the cologne like she does (and she DOES) I don't really want to be around her anyway.

Now that I think about it, my migraines have given me a small gift in that way: I no longer have to deal with anyone I don't want to. People who are too loud or rude, people who smell, people who have personal space or boundaries issues, people who interrogate me about my illness as if that's the only thing I have to talk about, I can avoid them all with one simple phrase, "I'm sorry, but you are giving me a headache." I just throw the "I'm sorry" in there to be polite, but I'm really not sorry. Get the hell away from me all of you insensitive jerks.

I've mentioned this before, but I am nervous about getting my disabled placard from the DMV. Oh, the happy dream it'll be when I can park close enough to stores to still be functional by the time I get in the door. I don't imagine that I'll use it every time I go out, but if I need it, I have no shame. What I do have is a fear of the crazy judger people out there who think that they are the disabled police. If my head hurts, and I need to use a disabled spot to make it in and out of my destination with *less* exertion icing being lathered onto my migrainous cake, I really doubt I'm going to be able to defend myself adequately. Or, maybe I'll just rage out, which happens when the wrong buttons are pushed on my head. What I need is something like a cane or a wheelchair, something that sends the message that something is wrong with me and there is no need to bother me with my parking choices. Something to make my disability a little more visible. **Lightbulb** I bet if I wear my bright yellow industrial-looking earmuffs while I park my car in the blue spot, no one will bother me. They'll all stare, but I doubt I'll get any conversation. Unless I see someone I know. I am NOT pretty in those earmuffs.

What was I talking about again? Oh yeah, sorry.

The nice thing about my illness being invisible it that I can fake it. (This can also be a bad thing, but we'll touch on that in another post.) When I am just meeting someone for the first time, or I'm at a birthday party, I can smile and be quietly cheerful, and no one is the wiser to the demolition that is going on inside my head. I can't keep it up for long, though. Faking it is exhausting.

I do sometimes wish my illness was more visible. It would be easier in some respects. Then again, my invisible burdens weigh me down so much I can barely move some days, so how I can assume that someone else's would be easier, just because they can be seen?

I am what I am, I have what I have, and all I can do is my best with it. So, I do.

Monday, September 14, 2009

30 things for Invisible Illness Week

In honor of Invisible Illness Week, 30 things about my invisible illness you may not know:

1. The illness I live with is: atypical irretractable migraines. Or something along these lines. My doctors have commitment issues.

2. I was diagnosed with it in the year: 09/2007

3. But I had symptoms since: 04/2007

4. The biggest adjustment I’ve had to make is: Being a quiet person, when formerly, I was always the loudest in the room.

5. Most people assume: that if I say I am fine, I mean it. I rarely do.

6. The hardest part about mornings is: waking too early or too harshly. If I wake up wrong, I can suffer for days.

7. My favorite medical TV show is: I would like Nurses Jackie and Hawthorne to join the cast of House please.

8. A gadget I couldn’t live without is: laptop or dvr. both keep me sane and distracted when I'm low, and entertained and educated when I'm better.

9. The hardest part about nights are: I want to go nocturnal and enjoy life without the evil, triggering sun. But my body won't let me. :(

10. Each day I take about 5 pills & vitamins, lately.

11. Regarding alternative treatments I: will try everything once, within reason.

12. If I had to choose between an invisible illness or visible I would choose: This is like a trick question. If it was visible, it would make my bad days easier, maybe people would cut me more slack. But it would make my better days worse, because it would still, theoretically, be visible and I would still get that "special treatment". Or am I reading too much into it?

13. Regarding working and career: I am severely disabled and totally and completely unsure of my future.

14. People would be surprised to know: my internet friends would be surprised to know how shy I am about my illness in real life, and my real-life friends would be shocked by my candor in my blog. Interesting contradiction.

15. The hardest thing to accept about my new reality has been: that I need help. And that I shouldn't be ashamed of it.

16. Something I never thought I could do with my illness that I did was: Coherently blog about it, and have people read what I write, willingly.

17. The commercials about my illness: Are not about me. I am atypical. yay me.

18. Something I really miss doing since I was diagnosed is: being busy. I feel so sedentary.

19. It was really hard to have to give up: laughing with abandon.

20. A new hobby I have taken up since my diagnosis is: gardening.

21. If I could have one day of feeling normal again I would: have a huge party and invite everyone I know. I'd spend all 24 hours talking and dancing and laughing and climbing trees and frolicking wildly.

22. My illness has taught me: humility, accountability, empathy, inner peace.

23. One thing people say that gets under my skin is: when are you going to get over the whole headache thing?

24. But I love it when people: don't judge. and ask intelligent questions. "Have you tried excedrin?" is not one.

25. My favorite motto, scripture, quote that gets me through tough times is: Actually, Michael J. Fox has been a huge inspiration to me, lately. Can't pick a quote, but his whole mentality about disability is amazing.

26. When someone is diagnosed I’d like to tell them: Stay strong for yourself and be easy with yourself. But keep moving, even slowly. And don't lose perspective.

27. Something that has surprised me about living with an illness is: My own strength. I am woman! RAWR!

28. The nicest thing someone did for me when I wasn’t feeling well was: told me to sit down and asked if there was anything I needed. Unsolicited, unconditional, nonjudgmental, unassuming help is sadly rare and heartbreakingly beautiful.

29. I’m involved with Invisible Illness Week because: I need to feel proactive to feel like I am alive.

30. The fact that you read this list makes me feel: visible. Jasmine said it first, and her answer resounded with me deeply.


Saturday, September 12, 2009

I Got a Shot in My Head!

It hurt.

It was another new doc, and this one was a occupational therapist. He gave me an occipital nerve block. I had NO IDEA what that was going to be like. I've decided to write it out, for my own self-indulgent reasons AND for the noble cause of preparing my readers for their own head shots. Because when fifteen thousand unexpected things happen in the space of twelve seconds, you don't want to cry, then giggle wildly and scare the doctor.

Let's start with the actual appointment: By the time we got there, I was already nauseous and hurty. Besides the obligatory overhead fluorescent lighting, they had a radio on. And then there were some insurance shenanigans. So, I sat outside, against the cool stucco wall, and filled out paperwork. Then the tile floor started making me nauseous. Seriously, can I get a break from the triggers already?

It took a half an hour to get into the exam room and another ten to fifteen for the doctor to make his way in. We turned off the lights in the room and closed the blinds on the window, so when he finally walked in, he stopped for a moment, startled by the dark. I grinned at him and said, "Welcome to my world." He grinned back and started singing a song I've never heard that contains that phrase. I was instantly at ease. Even if we got nowhere with the appointment, at least he wasn't going to be a big jerk. Big jerks don't burst into song before introducing themselves. Weirdos do, and I like weirdos, generally.

We established my problems quickly, and he checked my reflexes. After a lot of discussion about my symptoms, he suggested another MRI, one including my neck, and a nerve test. He recommended I see someone with whom I already have an appointment next month. That was cool. Then HE SHOT ME IN MY HEAD!

So, this is how it went down: He asked where I thought I might benefit from being shot. I suggested my temples and he demurred, he'd never stabbed anyone there before. Not wanting to be his first, I suggested the back of my head. He agreed, an occipital nerve block might just help me out. He told me to pick a side, I went with right. I laid on my stomach, with a pillow under my chest and my head dropped forward. He froze my right occipital... area?... by spraying it with some freezy stuff. Unfortunately, the freezy stuff dripped past my ear, down my cheek, and off the end of my nose. It was all alcohol fumes, so I was holding my breath desperately, hoping it would dry before he started the injection. I didn't want to cough with a needle in my head. Then he poked me. I kind of felt it at first, but my skin was good and numb. I was still holding my breath. The smell wasn't gone, but my lungs were concerned about the lack of air, so I started taking short shallow breaths. The nausea from the smell set in almost immediately and a second later, the freezy stuff started to wear off. I could feel it, and it felt really odd. It slowly started to hurt more and more, and I made a weird noise. It was a kind of whiny moan. Then he pulled it out and I had the craziest head rush I've had since I was 22, at a party and not having an occipital nerve block. I started crying without noticing and slurred, "I feel weird." The doctor asked me to clarify and I started giggling, "I've got the wah-wah's." (Which means, for those not in on the lingo, that I was feeling EXTREMELY intoxicated, and my head was buzzing in rhythm with my pulse, which can result in hearing a sound not unlike Charlie Brown's teacher in slo-mo, WAH..WAH..WAH), I kept giggling until I started to creep myself out and then abruptly stopped. I was still facedown. The doctor said, "Ok, well.... hang around for fifteen minutes if you want, take it slow, let us know if you need anything." Then he was OUT of there. I don't know, maybe his lunch was waiting for him, but I imagine that my reaction freaked him out and he went somewhere to drink.

The head rush faded slowly, and I felt sober after a few minutes. I could sit up after five, and stand after ten. I practiced walking before I left the room. The right side of my head felt numb, and for the first time, my headache was solidly only on one side of my head. I walked slowly and carefully out to the car, and by the time I got there, the numbness had worn off and my head went back to an even distribution of pain, no better or worse, though.

By the time we got home, another twenty minutes, I just wanted some ice and my couch. A few hours later, the injection site was sore and my neck was stiff. I kept stretching it gently, and icing. It gradually got worse, and I wished I had asked for narcotics. I medicated as well as I could with that I had; one super ibuprofen, half a vicodin and a couple valium. I went to bed with an icepack and fell asleep quickly.

I woke up the next morning and the worst of the swelling had gone down but it was still sore, and a little stiff. I had a family gathering to attend, and I was feeling optimistic. My head hurt slightly less than usual upon waking, and didn't protest nearly as loudly as usual as I went through my morning routine. I showered, dressed and loaded the dishwasher. My head was all, "Excuse me, darling, you may want to sit for a minute, as this level of activity is a little aggravating." instead of the usual, "OMFG WTF NOOOOOOO LAY DOWN NOW OWOWOW!" This was encouraging.

At the party, I was careful, at first. I had one earplug in at all times, my water bottle filled, I was sitting in the shade and I was feeling pretty good. I was talking and laughing, acting closer to normal than I have in months. Maybe a little too normal. I only made it two hours before I suddenly realized I may have overestimated my capabilities for the day. A migraine was coming.

I was starting to feel irritable and confused. My eyes were aching. I couldn't sit comfortably. It was time to go. I said my goodbyes, and hugged everyone, got in the car and waited. It took us about fifteen minutes to get home. By the time we did, I was having trouble climbing the stairs. It's all a little blurry from there.

It was about 30 hours before it finally broke, and there are no numbers to describe how bad it got.

I don't blame this migraine on the nerve block, since I get them at least once a week no matter what I do. However, I am positive that the severity of this last migraine is directly related to the temporary lessening of pain, which led to me triggering myself being all laughy and chatty. Not the block's fault, just my own for enjoying the reprieve a little too much.

I'm not going to be rushing to get another occipital block, at this point. Any relief it gave me was too minor to be any real relevance. I hear that there are docs who will shoot you in the temple, though, which might give me more dramatic results, for better or worse.

Also, there's the botox. But that's another post.


Monday, September 7, 2009

The Interviews Have Begun, II

When we left me in the neurologists office, here, the doctor was questioning me about my emotional health and had just shooed my protesting significant other, and advocate, out of the room. Let's see what happened next:

The door closed and he paused for a moment. He said I need to get out more. Make my world bigger. Overcoming my triggers? Mind over matter. He went on about it for about five minutes. It was all proactive steps and going outside. Then he recommended I pick up some self-help books and talk to a shrink. I stared at him. I cleared my throat and asked if he had a recommendations of someone I should talk to, "Might as well get a referral, if you know of someone..?" "No. Just call the (generic number of the database of shrinks)." He did not write down the number, and I have no idea what he was talking about. His manner at this point had become very dismissive and a little condescending. I ignored it, determined to reap something positive from the appointment. I asked about the self-help books. Was there one in particular? He said no, just to go browsing and see if something speaks to me. He offhandedly mentioned the book, "Sick and Tired of Being Sick and Tired", which I will probably take a look at. He told me that if I have fulfilled these prerequisites, I should call to make another appointment with him, but without the shrink and book, I shouldn't bother. I didn't find this off-putting at all at this point, however snarky it may come off in my writing, but appreciated his candor. I smiled and shook his hand, said, "I completely understand, no one wants to waste their time." His faced changed a little when I said that, and he knew exactly what I meant. I won't be.

I do plan on seeing a psychologist, but it's not my very first priority. My pain definitely causes me psychological distress, and I want to address that. But it's the order of things that I think is important and the order is: (1.) Pain causes (2.) psychological distress. If we reduce my pain, I'll be happier and more active. This neurologist and I disagreed plainly on this point.

I am not adverse to the self-help section, and plan on leafing through a few, including the one he recommended, next time I'm in the neighborhood. However, I honestly don't think I'm going to find much better information on how to reclaim my life from pain and/or cope with migraines there than I can find on one of my frequented migraine blogs or websites that he so quickly dismissed.

I feel like he sized me up, and he sized me up wrong.

It's frustrating, but I'm trying to look at it like a learning experience. We've learned that we need to go into the doctor's office with the goal in mind. We are a united front. My man is going to work on his communication style and I am going to never allow him to be dismissed from a room again. He is my advocate and even if I do not agree with his choice of words or posture, I have to agree wholeheartedly that he has my best interests at heart.

We have more appointments lined up in the near future with other doctors; a few neurologists and two general practitioners. Hopefully one of them will be a good fit.

This doctor may not have been the right one for me, but he did validate some of my recent life choices and gave me a few things to think about. He encouraged me to keep gardening and to take up other positive activities and to continue self-medicating like I've been, as he seemed impressed by my solo efforts since being doctorless. (But he disapproved of my methods of self-educating, the internet, which directly led to my good* judgment in treatment options. (*Good being subjective, of course.) So, whatev, doc.)



Wednesday, September 2, 2009

The Interviews Have Begun

Had my first appointment in six months with a new neurologist yesterday. I doubt I'll be seeing him again.

Very soon after he walked into the room he made it clear that he would not fill out any paperwork for disability, school, the dmv, et al, on my behalf. Ever. I didn't bring anything for him to sign to this appointment, and he was the one who brought it up (lest you get the wrong idea about me). Since he stated this policy early on in the conversation, I knew pretty quickly that we wouldn't be seeing each other again. A doctor's written opinion and recommendations are going to be very important to me in the next few months, so this was pretty much a dealbreaker for me. Besides, his outright and pre-emptive refusal sent up some red flags for me, as I have never met a doctor who had this attitude. It made me uneasy.

Despite my first impressions, I still wanted to hear what he had to say, and hopefully get a new perspective. He and I seemed to share similar ideas on improving one's quality of life and choosing treatment options carefully and with thought behind it, instead of prescribing willy-nilly, hoping one of the darts will land on the bull's eye. I figured that he may not end up being my doctor, but he was still a doctor and any professional opinion has value, right? (Spoiler alert: Maybe not.)

I told him my story, as well as I could. I was careful about my words while discussing my head's history. I didn't want to forget anything. Then we talked about ways I keep myself active. I talked about how I think gardening saved my life a little, and teared up. He was supportive of this activity and explained to us for a minute about how a sense of accomplishment can effect the brain positively and can reduce pain. I'm familiar with the idea, and I'm, of course, paraphrasing his explanation. We talked some more about how my life has changed, I welled up a few times, too, when explaining how hard it is to socialize and how frustrating it is to not be able to go out. I told him about trying homeopathy, bettering my diet, avoiding my triggers and trying to keep up with daily life.

He asked about the origins of my head pain. I told him about getting shingles, having to leave a job I enjoyed, and my previous doctor experiences.

Then things went south. He was uninterested in my individual symptoms, changing the subject when I start to explain my experiences. He told me I didn't have migraines, because migraines have a clear beginning, middle and end. I opened my mouth to explain the difference between my daily headache and my migraines, but then shut it firmly once he told me that my online resources, communities, blogs and forums were unreliable and an unhealthy use of my time. This frustrated me very much. Just because he doesn't do anything online but download porn and google himself, doesn't mean the rest of us aren't crazy-wicked researching geniuses. (Note: This last sentence may have been composed in a fit of irritation. I'm sure he at least knows how to use his email.) Bitter digressions aside, I can do anything online, including educating myself enough to survive the past two years without a doctor who is truly working with me. And I should have told him as much. But, I didn't. He had proved himself to be untrustworthy, closed-minded and ignorant. When I closed my mouth, I thought it was going to stay closed for the rest of the appointment.

Then he told me I was wearing a hat and earplugs to cut myself off from the world, that I was retreating and using the headaches to avoid reality. I corrected his assumption and let him know that I was wearing the hat because his overhead fluorescents (THE BLINKY KIND!) were making me nauseous and that I always wear at least one earplug out of the house, in case of sudden noise emergencies. And that I only withdrew from the world when my head decided it was too harsh, and I dearly miss my friends and family and working and my LIFE.

Without missing a beat, he asked me if I had ever been diagnosed with an anxiety disorder, or found going outside difficult. I joked, "Not before the pain started." He made a speech about placebos working in people because they have faith. He asked about my relationships with my family. At this point, my boyfriend started to dominate the conversation, as is his defense mechanism when he feels attacked. He told me later that he saw the doctor playing the crazy card a mile away and was trying to head him off. I was already irritated with the doctor, feeling like he wasn't quite understanding my situation, and things got even more frustrating when my usually-polite boyfriend started talking over me to drive a point home with the doctor. (That I'm not unhinged.) The talking and noise were making me confused and cranky, as it happens. So, when the doctor asked my recently-noisy boyfriend to leave the room, I didn't protest. I figured he was going to ask me about our relationship, or some other personal questions.

But he didn't.

Because the joy that was this appointment can not be contained in just one post, I'm cutting the story off here. I'll continue it next week. Stay tuned.