returning to the complementary medicine fold

I posted earlier this month about the options that Dr E gave me regarding my treatment, mainly to try another Migraine preventive, or to go see an herbalist. I decided to take the referral to the herbalist, Dr P. I did not feel mentally ready to trial another preventive med, and I wanted to make sure I was getting the most out of my supplements before I add on prescription meds.

My appointment with Dr P went very well. She spent about an hour with me and gave me a lot of information and ideas.

She thinks that a lot of what's complicating things (and contributing to the strange med reactions) is emotional overload. She did not mean that Migraines are purely an emotional problem; more, she recognized the complex relationship between Migraines, Depression and Anxiety. She thinks a big issue for me is that I don't just allow myself to feel without analyzing - the curse of being a therapist's daughter. I'm very good at figuring out why I'm feeling the way I'm feeling, but not so good at just letting myself feel it. Instead I think about why I'm sad and figure out the reasons for it, but don't let myself just feel sad without the "why". I don't like showing emotions in public, especially at work, so I tend to keep that lid on all the time.

Her main recommendations are that I do some "bodywork" to help put myself more back in touch with my body. She also thinks I need some space to just express emotion without analyzing it. Specifically, she wants me to retry acupuncture, and add massage therapy and dance therapy. I tried acupuncture last year, and while I had some success with it, I felt dissatisfied. She mentioned that the success of acupuncture depends not only on the techniques, but also how the patient "clicks" with the practitioner. This makes a lot of sense, as it holds true for any doctor-patient relationship. Complementary medicine practitioners are no exception.

Dr P had specific referrals for both the acupuncture and dance therapy, and I have a place very close to my office that does medical massage therapy and takes my insurance. While the dance therapy idea seemed a bit strange to me at first, after thinking it over I'm willing to give it a try. When I was younger, I took dance classes (age 4-16) and it was a big part of my life. Dance was my main form of stress relief, and it was very effective. So getting back into dance makes sense, and why not try a more freeform kind. Dr P recommended I try Nia dance, so I'm working on finding a class nearby that works with my schedule. I love the whole philosophy of Nia, and it draws from several movement forms I've practiced in the past, including modern dance, yoga and tai chi, among others.

On top of that, she also changed up my supplements. She had a specific brand she wanted me to change to for my multi, C and B2, and replaced my chelated magnesium with calcium-magnesium. She also added CoQ10 and Petadolex, as well as a live culture form of acidophilus (Primadophilus Optima) for my IBS. She wrote down specific brands and dosages for all of them.

This sounds like a lot of changes at once, and it is, but she thinks I may be better served by doing this at once rather than one thing at a time. She explained that with the holistic therapies, often one thing won't work, or even a combination of five things won't work, but adding a sixth or seventh thing is what allows everything to work together. So by changing my supplements, and adding acupuncture, massage therapy and dance therapy, we're hoping to see some improvement. She (like me) doesn't expect a miracle cure, but hopes this will at least start improving things for me.

It was a lot to think about and absorb. I like Dr P a lot. She seems to have a good balance between western and eastern medicine, recognizing the benefits and flaws of both. I feel good about her recommendations, and like the idea of trying a more holistic approach before I go back to medications. I don't expect this treatment plan to be a magic fix, but I am optimistic that it will help. I see Dr P for a follow-up appointment in 2 months, right at the beginning of January.

I have started both the acupuncture and massage therapy and hope to try a Nia class on Saturday; I will post about all of these in the near future. I've only been following my new treatment plan for a few days, but I can already tell a slight difference in my energy level. I feel more optimistic about this than I have about anything health-related in a long time.

Be well,
MJ

a long-overdue update

I'm ba-ack!

It's been a truly difficult few weeks for me and I hadn't felt up to posting. But it feels like maybe things have leveled out a bit, so here I am.

I posted a few weeks ago about needing to recover after a combination of Botox and family visiting. I thought I was in the clear, but the past few weeks brought worse.

The Botox reaction lasted longer than a week, and combined with a bit of withdrawal from the Lyrica to make me pretty miserable. I started having some weird symptoms, namely irregular heartbeat and tremors, which prompted my headache specialist to send me back to my PCP. I saw the NP at my PCP's office, who ran a full panel of bloodwork and had me wear a 24-hour holter heart monitor to see if we could discover anything. The bloodwork came back normal, and the holter didn't find any "documentable correlation" between my symptoms and my (very regular) heartbeat.

All of the testing and results took about 2 weeks. During those 2 weeks, the Depression and Anxiety that have been creeping up on me started to take over my life. I hardly posted on the MMC forums. I withdrew from DBF. I became very moody and irritable. And I felt horribly sick the whole time.

This past week it all came to a head. My insomnia came back full force. I left work early on Monday to come home and rest. We've had company staying with us this week, friends from college, who don't know much about what's been going on with my health. DBF has been unusually stressed at work. I asked for accommodations at work when a better desk opened up on my team, and my boss gave the desk to someone else. I felt like no matter what I tried to do, nothing was helping me to get or even feel better. I did have an appointment with my new therapist on Wednesday, but having to go through my family history was painful and only made me feel worse. (Though, in the long run, talking about some past issues will undoubtedly help me.)

Once I got the results from the holter on Thursday, I gave my headache specialist a phone call yesterday to let him know everything turned out normal, and my irregular heartbeat had disappeared. The tremors seem to be a holdover from the Lyrica and come on when I've overexerted myself. He returned my call yesterday but I missed it; fortunately he was on-call this weekend and called me first thing this morning.

What a difference a 20-minute phone call can make!

A big part of my Anxiety was my contradictory feelings that one, I am not ready to try any new preventive medications because of my awful side effects with them; but two, I couldn't face sitting around and doing nothing. So therefore (I thought) I had to try a new preventive. Faulty logic, I know. Medication isn't the only treatment available for Migraine Disease.

When I called my doctor on Friday and spoke with his NP, I told her that I'm not ready to try the propranolol he prescribed for me, and wanted to talk about alternatives. When Dr E called me this morning, we went over the symptoms I had been having - irregular heartbeat and tremors - and he saw from my call in yesterday that they've cleared up. Well, the heartbeat has. I told him the tremors only seem to come on at night after I've overexerted myself.

I explained to him my reluctance to try any new preventive meds, because of all of the awful side effects I've been having. He seemed to understand that and we discussed it for a bit. He also asked about my stress at work (somewhat stressful but I don't take it home with me) and my general emotional state (not so good). He asked straight out about any Anxiety/Depression issues, both of which have been worsening as my Migraines continue. I was relieved he brought it up without making my Migraines/CDH into an emotional problem. He recognizes that they feed each other, a sort of chicken-and-egg problem.

I asked him about supplements as preventives (in particular, CoQ10) and any alternative treatments I could try (I've tried acupuncture and biofeedback/relaxation in the past). He's not convinced that any supplements will be enough for a complex chronic case like mine. He thinks I need the more aggressive meds, but recognizes that I then run into trouble because of my sensitivity to side effects. But he is willing to go that path if that's my preference.

He gave me the option of a referral to an internist in the area who also has a degree in herbology. He trusts her, and I like that she has a background in both eastern and western medicine and uses them together.

So, I have a few options. I can try the propranolol that he prescribed for me last month (very low dose). He's a bit hesitant about this because of the potential side effect of depression. He also suggested I try an SSRI (Celexa) at a low dose, instead of the propranolol, to help ease the Depression/Anxiety and hopefully work as a preventive as well. I have the option of taking a med holiday until I feel ready to try something new. I can also get the referral to the internist and try the supplementation route. If I decide to try acupuncture or biofeedback again, I'm sure he will help out with a referral for that as well.

What I'm going to do is sit on these options and think about them over the weekend. I feel much better after talking to him. He really seems to understand my reluctance about meds and didn't at all push any drugs on me. And I appreciate that he understands my need to think over all of these options before I decide what to do next.

I still have a long way to go treatment-wise. My Migraines are less severe with the Botox, but I still have Migraine/CDH pain constantly. I know it will take time to find a way to break the pain and get the frequency down. But I have confidence that Dr E can work with me to find a successful treatment regimen. When I got the call back from his NP telling me to see my PCP for the irregular heartbeat, I was worried I had been brushed off and he was giving up on me. I feel very relieved after my conversation with him this morning. It's obvious he genuinely wants to help me and is willing to work with a difficult case.

I hope to be posting more frequently again. Over the next few days I'll be catching up on everyone's posts. Hope all are AWAP!


Be well,
MJ

recovery

Much like National Headache Awareness Week back in June, I've been extra aware of my head pain this week, which happens to be both Invisible Chronic Illness Awareness Week and Migraine Awareness Week (in the UK). And I've spent this noteworthy week being rather ill, between a rather tall stack of Migraine triggers and some medical issues.

First, my family (Mom and sister) came to visit me. They live in Massachusetts, so it's an all-too-rare treat to have them come visit. Like me, they are both Migraineurs, so they "get it" about being sick and in pain, though neither of them have suffered with the severity of Migraine that I have.

My sister, mom and I went to Port Townsend for the long Labor Day weekend, to visit a pretty Victorian town none of us have seen, and to drive up to Hurricane Ridge at Olympic National Park. We drove up on Friday afternoon, returning on Monday. While it was a very laid-back trip and we cooked in the kitchen in our hotel room, it was still traveling, which always stresses out my body.

Tuesday through Friday, I was back at work, dealing with the typical stack of work triggers: fluorescent lighting, computer screen, food smells and noise. Being tired from the long weekend away made me more susceptible to my triggers, though I had a few days of recuperation before another long weekend. My mom spent the week traveling again, while my sister left on Monday night. In addition, the Lyrica I had been trialing as preventive #7 began giving me increasingly intolerable side effects, so with Dr E's okay I discontinued it on Friday, after several weeks of side effects.

Friday afternoon, DBF, my mom and I looked at a house before driving to Lake Chelan. This was more of a rush trip involving a lot of driving. By the time I got home Sunday night, I was completely worn out and dreading another week of work.

During my family's visit and our various trips around Washington state, the effectiveness of the Botox treatment I had back in June had been wearing off, meaning more pain and more Migraine symptoms. Luckily, Monday afternoon was my second round of Botox injections, and I was hoping for relief similar to my first treatment.

Wrong! This time, the injections hurt much more. Monday night, I felt awful. Bad enough that I called my doctor on Tuesday morning to report in about my side effects. Dr E called back quickly, and after asking me a few questions determined that I may be having a mild allergic reaction to the Botox. Great! He had prescribed a new preventive for me to try, Inderal, but suggested I hold off on it until I felt completely back to normal.

As if that stack of triggers and side effects wasn't high enough, I had a stressful week at work. My company laid off 20 employees on Tuesday, which amounts to about 5% of our firm. While we were very fortunate that my company was (and still is) financially stable, these employees were not laid off for performance issues. Our senior partners handled it well, holding four separate open discussions with the various teams and entire firm, inviting questions from everyone. They recognized how stressful the layoffs would be for all of us, but the shock of losing good employees (and friends) was difficult on everyone.

And because this stack wasn't quite tall enough yet, I worked 9-hour days on Tuesday, Wednesday and Thursday to try to make up for the work time I missed on Friday and Monday. So now, I'm in recovery mode.

What I need to remember in facing these types of life situations is that, first and foremost, I need to take care of myself. In my healthier years, I could handle the sort of stress that travel and work would put on my body without much trouble. But now that my Migraines are out of control again and I spend all of my time being sick, I need to take extra good care of myself during stressful periods. I've really done a number on myself, and I'm hoping that this weekend is enough to recover (though it may well not be).

I have been very frustrated and upset this week. Dealing with another failed preventive and an allergic reaction are difficult enough in my day-to-day life, but adding all this stress on top of it just threw my body for a loop. I had to leave work early today, after spending much of the day in a painful haze, to come home and nap. DBF woke me up for dinner, and after eating, I'm starting to feel less like road kill. I still feel incredibly dizzy, nauseous, achy (both Migraine- and Botox-related) and exhausted.

I had some plans this weekend, to go look at houses and run some errands. In all likelihood, I will have to postpone these plans and spend the weekend on the couch, trying to catch up on sleep and renew my energy reserves.

Megan over at Free My Brain wrote this week about her Migraines being invisible to herself. After these two weeks of overstressing my body and not taking enough recovery time, I find myself in the same boat. Acceptance of illness is a difficult path, and I find myself repeatedly learning the same lessons.

So, for the final few days of Invisible Chronic Illness Awareness Week, I plan to be much more aware of my own illness, and treat myself with the patience and compassion I deserve.

Be well,
MJ

national invisible illness awareness week

Those of us with Migraines certainly understand the frustrations of living with an invisible chronic illness, one that brings us incredibly debilitating pain and other symptoms. Many of these frustrations we share with other members of the invisible illness community, specifically that Migraines are invisible, and those around us can't tell we're sick just by looking at us. Hence the word, invisible.

You may have noticed in reading my blog that I capitalize the words Migraine and Migraineur. I adopted this for many of the same reasons as my fellow Migraineur bloggers: advocacy and awareness of Migraine as a disease, and more than just a bad headache. Teri Robert of MyMigraineConnection explains her reasoning for the capital "M" in her excellent blog post, Migraine With a Capital "M".

Ellen Schnakenberg over at WEGO Health has recently run into trouble with the WEGO editors. Per AP style guidelines, diseases are not capitalized unless they are named after a person (Parkinsons, for example). Because WEGO follows AP style, they will not allow Ellen to capitalize Migraine in the WEGO newsletters. After some pressure, they have allowed her to capitalize Migraine in her own blog posts and articles. Teri Robert fought a similar battle with About.com before she moved over to MMC.

This may not seem like a big deal. Follow the style guidelines and stop making a fuss about it already! But for those of us living with Migraine, recognition of our disease as what it is - neurological in basis with a genetic component, and incurable - is crucial. Public perception of Migraine is that it's just "a bad headache". How many of us have heard and been hurt by those insensitive comments? Can't you just take some Advil? You always have a headache. I used to suffer from headaches too, until I found ___ cure. Sound familiar?

Clearly I do not follow AP guidelines on my blog when it comes to this issue. And from now on, instead of capitalizing just Migraine, I will be capitalizing the names of all diseases - Arthritis, Multiple Sclerosis, Epilepsy, Lupus, all of them. Those of us with invisible illnesses not named after a person shouldn't have to be reduced to a lowercase letter, especially when these illnesses have such a large impact on our lives.

In the spirit of National Invisible Illness Awareness Week (September 8-14), I ask all of my readers to consider doing just one thing to raise awareness. That could be as simple as talking to your significant other about the details of your illness that you normally try to hide. It could be writing a blog post or a letter to a friend. It could be capitalizing the name of your illness, or all illnesses. It could be any of these things or others, whatever may be your personal comfort level.

For further reading about II Week, I encourage you to visit the II website and see what other bloggers are doing. If you have any ideas about raising awareness, I would love to hear them in the comments.


Find more videos like this on Illness-Disability-Healthcare-Caregiver Ministry Network


Be well,
MJ

rain, pain, no brain

Just briefly: my Botox is starting to wear off and I only just started Lyrica (preventive #7) last week, so that means very limited computer time for the next two weeks. I go in for my next Botox treatment on September 8, so I hope to be posting more regularly after that.

In the meantime, please check out the wonderful blogs in my blogroll. I'll try to pop in here as my Migraine brain allows.

Be well,
MJ

guest post

If you haven't seen it already, I was featured as one of the guest bloggers on the Invisible Illness Week Blog: should I claim the label to my illness as part of my identity?

Be sure to check out the other guest bloggers featured there.

Be well,
MJ

a bullet-point update

I'm a bit behind on posting, so let's see if I can summarize in a concise way.

• The July Pain Blog Carnival, over at How To Cope With Pain. I didn't submit an entry this month, but it's still got some great reads.

• On a related note, How To Cope With Pain is accepting entries for the August Pain Blog Carnival. No theme, just your favorite post. The deadline is August 22, so submit your entry here.
  

• The August Headache and Migraine Blog Carnival at Diana Lee's Somebody Heal Me. This month's theme is "when people don't 'get' Migraine disease". Some great reads here as well (I'm still working through it). Once again, yours truly missed the submission deadline, so you'll have to wait for next month to see me included.

• Diana Lee is now accepting entries for September's Headache and Migraine Blog Carnival. September's theme is "your best tips on improving communication between patients and their doctors". Entries are due by September 5, and you can submit them here.

• Marijke Durning over at Help My Hurt has a new feature, the Topic of the Month. This month's is "how can you find help for your pain?" Check it out and comment with your ideas here.

• Another plug for Help My Hurt. Marijke posted about the closing of the midwifery program at Miami Dade College in Florida. Read her full post here, including what you can do to help protect a woman's right to choose her method of delivery.

• If you're a blogger on chronic illness, be sure to check out Invisible Illness Blog's call for submissions. National Invisible Illness week is coming up next month, and it's up to us to publicize it! Any CI sufferer, or their loved ones, will find great information at their website, here.
  

Okay, I think that's it for now. I hope to update again soon on a more personal level.

Be well,
MJ

overcommitted and overwhelmed

I've been having a tough time lately. I feel like I say that a lot, but it's the truth. Dealing with my Migraine is difficult enough; add in the normal life stuff and it gets to be too much.

It is all I can do right now to go to work for 40 hours a week, and keep up basic maintenance of my health: sleep, diet, drugs. Add to that, the supplementary health stuff: doctor's appointments, phone calls to my doctors, managing my mental health, support group (MMC forums). Then all the "normal" stuff: relationships with DBF and my family, errands, bills, money, social obligations, email, reading blogs.

It's enough to make anyone tear their hair out, especially when it seems like tearing my hair out may temporarily distract from the pain of my Migraine.

I haven't even added into that list the things I want to do: vacations, trips, dinners out with friends, volunteering. Anything that will get me off the couch and out of the apartment.

Over and over, my body tells me: NO. You cannot do this or you will pay.

Back in February, the president-elect of our local chapter of AIA (American Institute of Architects) called me up and offered me the nomination as Associate Director of the Board. This is a very prestigious position, rarely offered to someone as young as me. My responsibilities include helping to steer the direction of our local AIA for my one-year term, participating in monthly meetings as well as meetings on hot-button issues, attending frequent AIA events, representing the young contingent of the AIA, and coming up with a project to work on during my one-year term. I accepted this position without hesitation, as it offers me an opportunity I've been dreaming of. Uncontested, I was officially recognized as one of the new Directors in June, and my term starts in September.

But how on earth will I be able to do this?

I had hoped, prayed, expected, assumed that by September my health will be better. But it won't be. It isn't. I can barely squeeze out a 40-hour week most weeks. How can I work as much as I'm supposed to and put in all this volunteer time? I don't think that I can.

When I was in college, pursuing my degree in architecture, I pushed myself beyond all reasonable limits to finish studio projects, finish research papers, finish courses. I graduated on time (5 years) with a double-minor, a year abroad, and enough credits for 7 years' worth of schooling. I look at that, I look at all I achieved, and I look at now. I should be able to just push through this, I think to myself. Look at all those all-nighters in school. Look at the impossible things I accomplished. Why can't I just do that now?

Because I'm sick. Even though my health first spiraled out of control in college (third year), the Topamax my first neuro prescribed worked within 2 weeks. And it worked for me the whole time I took it in college.

The obvious answer here is that when I'm healthy, I can just push through and accomplish anything I need to. When I'm sick, I can't. I need to lower my expectations and stop holding myself to such impossibly high standards. But it feels like I'm giving up.

I'm really torn about this AIA thing. I desperately want the chance to make a difference in the architectural community in my city. I would love the experience of working one-on-one with some of the (local) tops in the field. I already know what project I want to work on. But is it fair to myself, to AIA, if I don't have energy to dedicate to what I need to do? Will giving up on this feel too much like giving up? So many questions, and not enough answers.

I've already streamlined a lot of my life, gotten rid of many extraneous stresses. I've gradually withdrawn other committments, postponed my licensing exam schedule so I have more time to find a good treatment plan. I've given up so much and still my body says, not enough.

The one thing I want more than anything else, is a return to some bit of normalcy in my life. Everything feels chaotic, subject to the whims of my head. Will today be a good day or bad day? Will the Migraine control everything, or can I ignore it for a while. And the underlying question: when will I break this Migraine? When will the pain stop? Will I have to live with this screwdriver in my eye socket for the rest of my life?

If I don't do this now, when will it ever happen? What if I never get better?


(Much more to write, but my head is telling me it's time to get off the computer. The story of my life.)

Be well,
MJ

choices, decisions and resentment

Having such chronic migraines means, at this point in my life, I'm living with a lot of resentment.

I've talked before about the resentment I feel for my disease itself. Migraines have stolen much from me, and I resent that this disease has taken up so much space in my life. Usually I can use this resentment and anger to keep me going on my path toward getting better.

But I find other resentment in my life as well, which I don't talk about much. In the spirit of honesty and sharing with my readers, however, I'll talk about it now. And that is the resentment I feel toward other people. Before you close your browser window in disgust, please do read on.

It's not that I resent specific people. It's more that I resent (and envy) the carelessness of good health. I see it all the time, the ease with which many others live their lives, blissfully ignorant of the continual attentiveness that is chronic illness.

Most of my energy during the day goes to thinking about and coping with the little challenges I come across. I'll reference here the Spoon Theory, written by Christine Miserandino, the founder of But You Don't Look Sick?, a wonderful site for anyone with invisible illness. Anyone with chronic illness knows the very real challenge of living within your limitations, learning to conserve and use your energy (spoons) wisely. I've found that just to conserve my spoons, or to prevent spending them too quickly, in itself takes a lot of spoons.

This is something that is very difficult for people without chronic illness to understand. I don't (usually) resent them for it, but I do envy the decisions they don't have to make.

A friend of mine once described it like this:

On choice:

Most people simply make their choices and leave the momentous decisions for things like buying a house. It sounds to me like the difference is that simple choices become decisions for you. So in that sense you don't get choices. You're forced to make decisions, and the weight of each decision carries with it a stress load quite unlike that of mere choices. And since other folks don't have that load, they really aren't likely to get how the process affects every other aspect of life. "Well, why can't you just...?" You can never "just..." anything.

And that is the essence of this second type of resentment. I can never "just" anything.

A perfect example: my team is having a BBQ tomorrow after work. Deciding whether or not DBF and I will go has been putting a lot of stress on me. Do I have enough spoons left from the week to do this extra activity on Friday? Will I have the energy to socialize? What will I do about food? I can't eat any of the food being served (hamburger, hot dog, veggie burger) because of my strict diet. Will I have a good time if I go? What won't I be able to do this weekend if I decide to go to the BBQ? How will this affect my work next week - will I have enough energy to make it through the full 40 hours? Questions like this have been buzzing in my head all week. There's no easy answer. I want to go, but I don't know if the cost to me will be worth it. (And I'm not even talking about the $10/person contribution to the food/beer budget.)

Most of the people on my team have not had to face these questions. If I was healthy, it would "just" be a matter of, is my schedule clear? Do I want to go? Yes + yes = go to BBQ.

.::.

Next Wednesday is my 25th birthday, the third birthday I'll have during this current bad migraine cycle. Never did I think I would be sick for so long. I'm trying not to be depressed about it. I will get to spend it with DBF, a wonderful, caring man who has been through so much with me on this confusing and difficult journey. And he's buying me ice cream cake. It's completely against my diet, but I'm not willing to skip it completely. I've had to give up so much already that I just need a slice of normalcy.

Have a good weekend, everyone.


Be well,
MJ

July's headache carnival is posted!

The July Headache Blog Carnival - How Spirituality Helps Us Cope with Migraine Disease - has been posted over at Diana Lee's Somebody Heal Me. Yours truly has submitted an entry, along with many other worthwhile entries I'm still working through.

Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month's carnival for a collection of informative entries on how spirituality helps us cope with migraines and headaches.

Be well,
MJ