learning to ask for help

DF and I recently went on vacation to Charleston SC for a week, which marked the official start of our wedding planning. We had a great trip. The first half we spent with my mom and sister; after they left, we had three days to ourselves to play tourist. I actually felt fairly good during vacation. I still had the daily head pain from my Migraines and IIH, but I paced myself and practiced good self-care, and was able to enjoy our vacation - even if a lot of it was spent in the condo we stayed at.

When we came home last week, the real world seemed to crash back into place around us. All the stress we had been ignoring about unemployment, finances and everything else hit hard. I realized - on the plane ride home, in fact - how much my Anxiety has gotten out of control over the summer.

Like many Migraineurs, I struggle with a number of comorbid conditions: Migraines, IBS and mood disorders (namely Anxiety and Depression). I've struggled with bouts of Depression in the past, particularly during my third year of college when I first got sick. Even after my Migraines and IIH were successfully treated, the Depression stuck around for a long time.

It's no secret to me that this has been a difficult summer. DF and I have not been able to land "real" jobs after being laid off last November. Between our paychecks and unemployment checks, we're making ends meet and aren't in any immediate danger, but everything feels very precarious. My health has only just started to improve from the very low point of last year. I've been dealing with a triple whammy, in a sense, of my unemployment, DF's unemployment and my crummy health.

This summer has marked a vicious cycle of Anxiety-pain-Depression-Anxiety that I just cannot get out of. The Anxiety about all the life stresses feeds my pain, and the pain in turn feeds my Anxiety. While I'm having less pain overall (thanks to the acetazolamide for my IIH), I still have not had any break in my pain in several years, and I still have a long way to go to find an effective treatment regimen.

I saw Dr E for a follow-up appointment on October 1, the day after DF and I got home from vacation. As I sat in the waiting room writing down last minute questions, I wrote a note about my Anxiety. It was serendipitous that my appointment with Dr E was right after vacation, when I realized how much I've been struggling, so I was willing to bring up my concerns. Anxiety and Depression are hard things to talk about, even with a doctor whom I trust.

In fact, I have spoken with Dr E about this same issue in the past, which made it easier to bring up this time. When I saw him in February, we discussed my Anxiety as related to unemployment; at that point neither DF nor I had any job prospects on the horizon. Dr E prescribed a low dose of citalopram (Celexa), though I never started taking it since I did find a job not long after my appointment.

But now I find myself stuck in the same position. And it's just tiring to feel all this emotional upheaval on top of my regular physical symptoms. I feel so frustrated by the constant pain, the daily dizziness and nausea, that I often just want to scream. The longer all of this stretches on, the harder it becomes to cope.

Dr E wrote me a new scrip for the citalopram, leaving it up to me to fill it any time after the appointment if I felt ready for it. (He understands and respects my reluctance to try new medications after a series of really bad reactions.) I decided earlier this week to get it filled, and will be starting it next week. And I'm nervous about it.

It's so difficult to ask for help because it can be so difficult to admit to myself that I need help. I can't think myself out of my mood disruptions any more than I can think myself out of my Migraines. While I can do relaxation exercises and other non-drug therapies to mitigate my symptoms, they will not change the underlying chemical and neurological problems. So Monday evening, I will take my first dose of citalopram and hope for the best.

I'm learning, once again, how to ask for help when I need it, and trying not to feel like a failure for needing it.


Be well,
MJ

finally, a rescue (medication)

Since getting my first Botox injections two weeks ago, my pain levels overall have decreased, even though my ongoing migraine still hasn't quit. My base pain level is now a 2 out of 10, rather than 4. I still spike as high as an 8 weekly or so, but overall I'm feeling a bit better.

This weekend was not so great, between intense sunlight, gross smells from neighbors' apartments and a broken elevator, meaning 4 flights of stairs. Sunday afternoon, DBF and I went to run some errands and by the time I got home - climbing up all those stairs - my pain was at an 8 and holding steady. Ice packs weren't doing anything.

So I decided to try some Relpax, which was the third time I took it. Both times previously, it had made me more tingly on my left side and sort of woozy, but I was willing to try it again.

Once again, it made me tingly. Very tingly. And then part of my face went numb. *sigh*

So I called Dr E's office first thing on Monday morning to let him know I was having trouble. He called me back toward the end of the day, and after a 10-minute discussion, he called in scripts for Amerge - as a "gentler" triptan option if I'm not tingly - and Fioricet - as a rescue if I am tingly.

All I could think when I got off the phone was that finally I have a doctor willing to prescribe me a rescue medication. My last doctor's attitude was "pain pills don't work", end of story.

I tried the Fioricet last night, only a few hours after picking it up from the pharmacy. It brought my pain levels down pretty well, so I'm happy to add it to my arsenal. It's not likely something I can take at work, which still leaves me without something to take if I'm tingly and in pain and at work. I haven't tried the Amerge yet.

I'll be calling my doctor again next Monday, to give him an update on the Botox progress. I should be able to let him know how both the new meds work out for me, too. I'm happy to finally be making some progress; I just wish it didn't take so darned long.

*sigh*

I have much more to say, but it will have to wait for another evening. So, for now, check out June's Pain Blog Carnival.


Be well,
MJ

the irony of National Headache Awareness Week

It's ironic that National Headache Awareness Week would be a bad head week for me, but so it goes. Had I been feeling better, I could have publicized it at the beginning of the week, and perhaps even watched the new NHF youtube channel videos.

Instead, I've spent the week absolutely miserable, with severe head pain and the whole list of my typical migraine symptoms: vertigo, nausea, stomach pain, diarrhea, phonophobia, photophobia, cutaneous allodynia, sensitivity to smell, depression, difficulty concentrating.

Part of the problem is that I finished a 10-day course of prednisone, which Dr E had prescribed for me in hopes of breaking my months-long migraine. I took a 5-day "burst" of the steroid, followed by a 5-day taper, and I had thought my body was dealing with the drug pretty well. I had some unpleasant side effects that were tolerable. But this week, after coming off of it, was terrible. I had horrid body aches and no energy, making me even more sympathetic to my fibro friends out there.

Oh yeah, and the prednisone didn't break my migraine. I did get five days of low pain, but as soon as I started tapering, my pain climbed right back to where it always is.

Add to that, I'm getting more side effects from the Topamax again, which I don't understand. I've been taking a 50 mg dose - a low dose, even for a migraineur - since March. Suddenly, I'm having stomach pains, worse nausea, tremors and dizziness again. And a new one: muscle spasms. My body is acting like I just started taking the Topa, even though I've been on it for several months now.

Luckily, I will be seeing Dr E on Monday. I'm scheduled for my first Botox treatment. I didn't get a phone call from his office today, so presumably my insurance has approved the treatment. (I will be calling first thing on Monday to double-check.) When I see him, I will let him know the trouble I've been having this week, and ask him about the reappearance of the Topa side effects.

So, in honor of NHAW, I've been more aware than ever of the impact migraine disease has on my life. All week I struggled to get through work, and couldn't in fact work a full 8-hour day any day this week. Today I called out; even though my head pain wasn't as bad as it had been earlier in the week, my stomach was in bad shape and I had severe menstrual cramps to boot. And I was just plain tired.

I plan to spend the weekend recuperating - just like I do every weekend. But after such a bad head week, it's even more important to refocus on my body's needs and take care of myself. Everything else will have to wait. Including those youtube videos.

Be well,
MJ

migraineurs and CFLs: a crucial public health issue

I have posted quite a bit around the web on this subject, and even about my personal struggles with fluorescent lighting, but until today, I have not mentioned an important petition regarding migraineurs and compact fluorescent lightbulbs (commonly called CFLs) - at least, until now.

First, some background: in December 2007, the US Congress passed the Energy Independence & Security Act of 2007, a comprehensive piece of legislation designed to decrease our country's gobbling-up of energy. Buried in this was a mandate to phase out all incandescent lighting by 2012.

The idea behind this particular piece of the law is that incandescent lighting is incredibly inefficient, and more efficient forms of lighting are already available on the market. By 2012, when US consumers are no longer able to buy regular incandescent bulbs, they will have to buy more efficient forms of lighting, thus reducing our energy consumption even if no one's energy consumption habits change. In other words, if you're one of those people who leaves lights on 15 hours out of the day, by using CFLs instead of incandescents, you'll cut your energy consumption (and electric bill) rather significantly without much effort on your part.

Sounds good, right? It all is - in theory.

Here's the problem. For many migraineurs, myself included, CFLs trigger debilitating migraine attacks. CFLs also have been shown anecdotally to cause health issues for other people, including those with epilepsy and lupus. So while none of us will argue with the importance of being "green", CFLs are not a viable option for us.

Unfortunately, with currently available technology, CFLs are the easiest replacement to make. They are made to fit in traditional lamp sockets and, while more expensive than incandescents, are still in a close enough price range that most consumers will choose these over other options.

Like many other migraineurs, this legislation truly worries me. If 2012 rolls around and incandescent bulbs become unavailable, I will not have many viable options. I can live my life in the dark, I can live by candlelight, or I can invest in significantly more expensive technologies, like light-emitting diodes (LEDs), that are also not ideal for typical household use.

Here's the thing: with the way the law is currently written, none of this is likely to change in the next four years. And that's why the Migraine Disease & Headache Bloggers Association has stepped up and written a petition to Congress.

Instead of outlawing incandescent lighting completely, we are asking Congress to amend their legislation, focusing on energy efficiency standards that all lighting would be required to meet. These standards would allow lighting manufacturers to continue to make incandescent lighting, but require them to find ways to make them more efficient. This would also allow CFLs to stay on the market, as well as encourage other new technologies to develop. By focusing on energy standards rather than specific technologies, the amended law would no longer be a knee-jerk reaction to the green craze. Instead, it would be a future-thinking law that will allow flexibility of technology, while still meeting the intent of the original law.

Migraineurs are not opposed to the use of CFLs - that is, unless we've determined this type of lighting is a trigger and we're being forced to use it in our own home. Many of us are trying to find ways to shrink our carbon footprints. We should not be forced to suffer because of a well-intentioned piece of legislation passed by Congress. This is a national health issue, affecting many of the 36 million American migraineurs. Surely we should have some choice about our home lighting? Surely we should not be completely eliminated from public life because of a lack of knowledge about the health issues associated with CFLs?

I ask all of you to take a minute and sign our petition, which you can find here: protect migraineurs from CFLs. Please pass this along to all those in your life. It's likely some of them are migraineurs, and they may not even know they're affected by CFLs.

For more information about energy efficiency in your own home, please see the US Department of Energy's great website, Energy Efficiency and Renewable Energy. In particular, Types of Lighting is an excellent basic overview.

For further reading, please see these posts by my fellow migraine bloggers:

• Teri Robert, Lighting, CFLs and Migraine Triggers
  
• Megan Oltman, Protect Migraineurs from Compact Fluorescents
• Megan Oltman, Alternatives to Compact Fluorescents - for Migraineurs and the Rest of You!
• Diana Lee, Please Sign CFL Petition to Protect Migraineurs
  
• Help My Hurt, Saving Energy May Be Causing Some Migraines
• RainGem, Fluorescent Lights as Migraine Triggers - the Petition
• My Life with Migraine, Protect Migraineurs from Compact Fluorescent Light Bulbs
• Pink Pearl Girl, Migraine and the Energy Independence & Security Act of 2007
• The Migraine Girl, Urgent: a Petition
  

Thanks for reading.

-MJ

stroke awareness month

May is Stroke Awareness Month. Pam over at Pink Pearl Girl's Migraine World wrote a great blog entry about stroke, so instead of repeating everything she wrote, I'll link you to it.

Migraine symptoms can often mimic stroke, so I'll remind all my fellow migraineurs out there to have any new symptoms checked out immediately by a doctor. If your symptoms mimic a stroke and are new to you, don't hesitate - call 911 and get help. I had a scary experience of this myself last month, and while I turned out to be okay, I don't for a minute regret having DBF call 911 for me. When dealing with the brain, you don't want to mess around!



-MJ

betrayed by my own head

A few months ago, I read a book by Michael Stein, MD, called The Lonely Patient: How We Experience Illness. While much of this book is framed in the author's experience with terminal illness (not his own, but that in his family), he does speak to chronic pain throughout. He divides the book into four parts, corresponding to the four reactions he sees to chronic illness: betrayal, terror, loss and loneliness. Betrayal is certainly one of the emotional reactions I seem to revisit frequently on my journey toward acceptance of this disease.

This weekend - Saturday night, especially - was another visit of betrayal.

Over the past two years, my chronic daily headache has gradually become daily migraines, and now a continual migraine since about the end of November. On one hand, this has taken away the unexpected and often frustrating aspect of episodic migraine, which is you just never know when it might strike. I always know when it will strike, which is always. I wake up with the pain, I eat, breathe, work, think, walk, do and sleep with the pain. It's there, a constant resident in my brain, whether I like it or not. I'm doing what I can to dislodge it, but in the meantime, I'm stuck.

My brain decided to play a new trick on me Saturday night.

DBF and I were curled up on the couch after dinner, watching tv, when I had this weird wave of dizziness pass over me, followed by pins and needles all over and a sort of hot flash. Then the tingling settled in on just the left side of my body (arm and leg). After a few minutes, when it didn't pass, I started to get rather scared. Something isn't right, my instincts are telling me.

You see, a migraine that lasts longer than 72 hours, without at least a 4-hour break in pain while awake is status migrainous, considered a medical emergency because it puts the migraineur at increased risk of migrainous stroke. Having had this particular migraine since last November, I pay extra attention to new symptoms. And like any educated migraineur, I know the symptoms of a stroke.

So, I told DBF what was going on, that I was scared. We decided to call 911. He told the dispatcher what was going on, described my symptoms and told them how long my migraine had been going on. The paramedics got here relatively quickly - though it seemed like an eternity, of course - and checked my vitals while they asked me some questions about my symptoms. They left the decision up to me whether they would bring me into the hospital or not, but they saw nothing life-threatening that concerned them. They did remind me that they are only firemen, of course, not doctors. I decided not to go with them.

I did call the doctor on-call at my fired specialist's office to see if he thought I should seek emergency attention. He spoke with me for probably ten minutes, asked some questions about my symptoms, about my IV treatment on Friday, including which drugs they had given me, when, and if I had had them before; as well as if I had had these symptoms before. He also checked to see if I had had an MRI before (I had one a month ago that came back normal). He believes these new symptoms to be another manifestation of this ongoing migraine and described it as "complicated migraine", which is a descriptive term (not a standard diagnosis). He did not see any need for me to seek immediate care, but did encourage me to call my doctor today.

As unpredictable as this illness often is, we still expect it to follow a certain pattern. My pain is usually here, I usually have these symptoms, I usually get a migraine after encountering these triggers. Whenever our disease breaks the pattern, it's frightening for one thing, but we are also left with a sense of betrayal. Migraine beast, it's hard enough to cope with you on a normal day, but why do you have to change your pattern?

The tingling has not gone away since Saturday night, but I also have not developed any new symptoms. The doc on call told me some specific things to watch for that would indicate a need for immediate medical attention. I called into the nurse's line this morning and left a message about these new symptoms; I got a call back asking for some more information, and letting me know the message would be passed along to my (fired) specialist tomorrow since she was already gone for the day. (Another sign that I know I made the right choice in firing this doctor - unfortunately she's all I've got until May 21 when I see the new guy.)

The good news is, I know I can rely on DBF in case of emergency. He took me seriously and didn't question the need to call 911. He kept me calm while we were waiting for the medics and when it was all said and done, gave me a big hug when I started to cry. And cheered me up by making me laugh. Because this whole thing freaked me out.

So, a reminder to all of you fellow migraineurs out there: if any new, unexpected or worrisome symptoms crop up - even if they are just new symptoms - please check with your doctor at the very least. When we are dealing with brain issues, it is much better to just have things checked out.

-MJ