Archive for the ‘Communicating’ Category

Expecting the Best, and Talking Straight

October 13th, 2009

I need to write to my recent, former Migraine specialist to tell him I won’t be coming back, and I’m having a hard time getting to it. I tend to dread upsetting or disappointing people, unless I am furious at them. I have nothing to be furious about with my recent doctor. I like him. He is a kind and caring man and a good doctor, and head and shoulders above the guy I saw before him who basically wouldn’t even treat me because I have medication allergies. I just was not thrilled with a number of things – how incredibly cautious he is, how very very long he wanted me to wait before changing dosages or trying new things.

He had something to say at most visits about the possible long term effects of using Migraine abortives.  I felt it was all very well and good to say maybe I shouldn’t use triptans in my 70′s, what about my unmanaged Migraines now? It was fine to say maybe I should come off a preventive after a year to see how I’d do without it, but why talk about that when we hadn’t even found an effective preventive for me yet? And I must admit the dread phrase “they’re just headaches” did pass his lips on one occasion. He seemed to think that going from around 8 – 10 Migraines a month to around 7 Migraines a month was good progress, but without really considering what the impact of those 7 Migraines is in my life.

Last month I saw Dr. Bill Young at Jefferson Headache Center, and I am thrilled to be in his care. The whole experience was what I think a Migraine appointment should be. The appointment includes an evaluation with a psychiatrist for any co-morbid emotional/psychological conditions that may be occurring. I have long wanted to have something to treat my anxiety, and my former headache doctor wanted me to go to a psychiatrist for that. I wanted to be working with someone within a headache practice, who could coordinate with my headache specialist, and perhaps find a medication that helped both conditions. That’s exactly what the doctors at Jefferson did, and I am now trying nortriptyline as a Migraine preventive which is also serving to make me less anxious than I have been in many years.

It didn’t hurt, I’m sure, that I already know and like Dr. Young. But there was much more to it than that. His level of understanding of the impact of Migraine disease, and way of asking questions to get that out, is truly skillful. I didn’t feel for one moment like I have to settle for lackluster progress just because I’m not as badly off as some.

I once wrote to a doctor who I felt had treated me really terribly, and laid out exactly why I wasn’t coming back. This is not a situation like that. I was treated well, not badly, by my recent doctor; I was treated with respect and caring. I just didn’t feel it was the best care for me, and I felt he could have gone further to understand the level of impact in my life, and to treat my Migraines more aggressively. I am glad he is where he is and if I need to go to an ER I will want to use his hospital. I guess there’s some valuable feedback I could give him, and it feels more than a little nervy to give it. I’m having a hard time being nervy.

- Megan

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Migraines & Driving & Driving Migraineurs Crazy

September 30th, 2009

I may have mentioned that lately I have been writing articles for Health Central’s My Migraine Connection on legal topics related to Migraine, as well as answering some of the questions that readers ask on the site. A reader came on recently and reported that her driving privileges had come under supervision by her state’s Motor Vehicle Commission (MVC) because she had self-reported that she had frequent Migraines. The MVC was considering whether to suspend her license. She was asking what to do. This sounded like a nightmare to me; I was really distressed for her, so I did some research. In the first place I discovered, not too surprisingly, that her state’s MVC had broad powers to supervise, suspend, retest or otherwise question the driving of anyone they suspected might have any kind of medical condition that could make them an unsafe driver. Researching further, I learned that just about every state has given similar powers to its MVC.

My suggestion was that she get a statement from her doctor that she knows the signs of a Migraine and does not drive when she has one, and that she consult an attorney. She came back later and reported that her MVC had taken her medical documentation, made her retake the road test, but that they had not suspended or restricted her license.

I did some more research and wrote two articles based on it, one called Migraines and Driving Don’t Mix – reviewing cases which have found people driving under the influence of pain killers (legally prescribed for Migraines) to be DUI, and other cases which found people driving with a Migraine (not with medications) were not DUI. I did stress that Migraines themselves impair us – they slow our reflexes and reaction time, interfere with cognitive function, aura obscures our vision, the pain and nausea distract us. I even went so far as to say I wouldn’t be surprised to see a case somewhere in the future where someone had a Migraine, caused an accident, hurt someone, and was held liable or criminally responsible.

In the second article, called Migraines and Our Drivers License, I reviewed the Motor Vehicle laws which set up medical review of driving privileges, trying to make people aware that we could have our licenses reviewed or suspended if Migraines impact our driving and the MVC finds out about it!

It’s been an interesting few weeks for me on the inter-tubes – I did not make myself very popular with some Migraineurs over all this! One group of readers thought I was being condescending. On one site someone ranted about how if cell-phone talking, lane-changing speeding morons should be allowed to drive, why should Migraineurs be singled out? I was called “militant” and I’m not some people’s favorite person. Several people asked me to tell them how they are supposed to get to work, function, etc…

I think I learned a lesson about my writing style, and I’m going to do my best to be more chatty and down to earth when I’m delivering hard news. I think that’s what this was – a case of kill the messenger. I’m not the Migraines & driving police (or the anything police, for that matter). We’re all going to have to use our own judgment. I just thought it was important for people to know 1) that Migraines impair us, sometimes even when we don’t feel like they do; 2) that people have been convicted of DUI even taking legally prescribed medications; and 3) that right or wrong, our condition is being scrutinized by Motor Vehicle Commissions.

Last night I dropped my son at his music lesson and went to the supermarket. Near the end of my time in the market I was very hungry and jittery, and I started to get sensitive to light, an early warning sign for me of a Migraine coming. My son was across a divided highway from me, needing to be picked up, and I had a week’s worth of groceries in a cart. So I had choices to make. I could have called my husband, and he could have come and got our son, me and the groceries. I decided to eat something and see if raising my blood sugar would hold the Migraine off. So I went through the checkout line and sat in the car eating for a while. I felt less jittery and better right away, and I made the judgment call that the Migraine was not going to hit full force in the 15 minutes it would take to get home. I picked up my son, drove home, and all was well.

Was that the right thing to do? Was I putting convenience ahead of safety? Was I being a hypocrite in light of the articles I just wrote and the position I’ve been taking? We have to make judgment calls every day with this disease. If my head had been hurting, if I was getting dizzy or confused, I would not have driven. I have called for rides, or pulled over to the side of the road in those situations before. I always try to err on the side of caution. Several people have left comments since I wrote the articles, about family members who were badly hurt driving with a Migraine.

All I’m asking is that we take this seriously, that we plan ahead, have a back-up plan, and take ourselves off the roads before we endanger ourselves and others. And I know it’s not fair, that there are lots of morons on the road who shouldn’t be driving, and all of that. It’s a very uncomfortable subject – it challenges our independence. I know. Sorry. I’m not trying to drive you crazy. Please don’t kill the messenger!

- Megan

Rearview mirror image courtesy of Dean Shareski; Steering wheel image courtesy of Tomas Fano.

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Posted in Communicating, Current Affairs, Managing, Travel | Comments (16)

Fatigue, Fibromyalgia & Denial

September 21st, 2009

Hello friends. I’ve been quiet lately. Had a marathon summer with a lot of work and a daughter to get off to college. She is off, settled in, working hard, and having the time of her life. I flew back from three days away, moving her into her dorm, and then I attended the International Headache Congress in Philadelphia for two days, then I spent a lovely day in Manhattan with cousins from the west coast, then I spent a day working, then I went back to Philly for a first appointment at the Jefferson Headache Center, then I collapsed.

I will post about the IHC, and about my appointment at Jefferson, (both of which were great) later. What I want to talk about today is “then I collapsed” part. Well I do have to touch on the appointment at Jefferson… mostly what was discussed was my Migraines and my anxiety level. I was very happy with the care I got, the thoroughness of the history taken, the look at Migraines in the context of a whole life. I have new treatment options and new hope.

It felt like almost a side note to the exam, when the doctor pressed certain points on my body which hurt tremendously.  Once he had pressed a half dozen, I realized what he was doing – pressing the fibromyalgia tender points.  One of the diagnostic criteria for fibro is pain in at least 11 of the 18 points – well, I had a great deal of pain in 14! He asked me if I feel pain in my body on a daily basis and I said there were days when I’m achy all over, but I’m not aware of much pain in my body much of the time.

But over the next few days I couldn’t stop thinking about it. My 10 day marathon of travel, launching a daughter, conference, appointments, left me bone weary and aching. You know when you first notice something you haven’t seen before, and all of a sudden you see it all around? I had this sense of a puzzle piece clicking into place. Why do I fatigue so easily? For the last few years when I exert myself in any way, whether it’s physical exercise, mental or emotional stress, or just being on the go for a number of days in a row, afterwards my entire body aches. For days. I have become terribly sensitive to touch, where someone bumping into me actually hurts, instead of just being jarring.  My husband and I were lying on the bed talking the other day and he had his hand on my calf. His thumb was resting on my shin, and after a few minutes just the weight of that thumb began to actually hurt.

I know people with fibromyalgia, and there are plenty of Migraineurs who also have fibro. I’ve read about it, and I have wondered for some time if I might have fibro too. You’ll see in my profile that I say I have chronic fatigue, but I’ve always had some question about that diagnosis, which was more of a suspicion by my family doctor than a real confirmed diagnosis. Up to this point, though, I have avoided looking into it for myself. I don’t want to face having another chronic illness. I want to live in the illusion that my limitations will go away someday. Ha! Oh well, a girl can dream.

I will investigate this further; I will talk about it at my next headache appointment. I know there are treatment options and support available. It’s kind of silly, really, to prefer denial. Having all the symptoms I have and no name for it really isn’t better than having the symptoms with a name. Knowledge really is power. I hear that the drugs used to treat fibro are really good for treating Migraine too, and many people’s Migraines improve when their fibro is treated. We’ll see. I still kind of want to stick my head back in the sand. Except I know my neck would hurt for days afterwards.

- Megan Oltman

Logan Square fountain image courtesy of Conspiracy of Happiness; shoulder image courtesy of Barbarellaa.

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Posted in Communicating, Managing, Medicine | Comments (2)

Heads Together for Support

August 27th, 2009

Next week I’ll be launching something exciting here at Free my Brain. Since I started looking for help with my Migraines over five years ago, I’ve been looking for a support group, and hearing about the value of support groups.  Since I’ve been hosting the Managing Life with Migraine teleconferences on the last Sunday of every month, participants have been telling me how much they love being on the phone with other Migraineurs.  The doctors we’ve had on the teleconferences have spoken about the value of making progress with small manageable goals.  People email me all the time asking about a support group – okay – I hear you! I coach Migraineurs in managing the various aspects of their lives needed to see an improvement in their Migraine profile and quality of life.  I’ve also led coaching groups for years, and know how a group can help each other to move forward – so…

I will be leading a twice monthly Migraine Support and Coaching Group. A group of up to 12 Migraine and headache sufferers will be getting together by phone (on a secure conference line) twice a month, to exchange support, tips, ideas and encouragement, and receive coaching and training from me to improve your Migraine profile and overall well-being.  We will work with your doctor’s recommendations, finding small manageable goals you can take on that will help you make progress.  Group members will also get access to daily e-mail coaching from me and two relaxation teleclasses per month, training you to calm you nervous system and make it less vulnerable to Migraine triggers.  You will form relationships with other group members, supporting  each other in taking the actions you need to take to move forward.

Meeting face to face is wonderful, and if you have the opportunity to do that, good for you. Most people I know who have run face to face support groups find that they are hard to sustain over time. For those of us with Migraine disease and headaches, it is key to simplify our lives and cut down on stressors. Having one more thing to get out to can be difficult. You can be in the Free my Brain Migraine Support and Coaching Group from the comfort of home, on the phone.

Frankly, I can’t wait for this group experience.  Here’s what you can expect: your fellow group members will also be pursuing goals in improving their health – and you will learn from them.  Group work on relaxation exercises and developing your ability to calm your nervous systems. The supportive structure of actions to take between sessions and a partner to talk to, to keep you in motion. Your coach and the other participants cheering your results and supporting you through the challenges. A place to vent and talk about your pain and challenges with others who support you and really understand, and keep focusing you on moving forward. Come by the Migraine Support and Coaching Group page to register or learn more, or contact me with your questions. I hope you’ll join me!

- Megan

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Keeping my Head Above Water

August 18th, 2009

Well, I wish I was literally swimming, rather than figuratively trying not to drown. I was just noticing how few posts there have been here, and that’s not like me. The good news is I’m managing not to have too many Migraines. I may be headed for one tonight – we’ll see. there’s a ferocious thunderstorm out right now. And the good news is I got away to my lovely cousins’ lovely beach-house on the LI Sound for the weekend, and didn’t bring much work with me.

I won’t try to hide that things have been tough. Although I am keeping busy writing and Migraine coaching and mediating and part-time lawyering, getting a daughter ready to start college in 3 weeks and a son to start high school at the same time, it’s a lot to juggle, and still get the rest I need and take care of myself the way I should to manage my Migraines. My husband has some free-lance work but needs a full-time job. Money is tight and I am a worrier. I just want to say hi. The worst thing is to go out of communication, and not let anyone know how you are. How I am is busy and worrying too much.

What’s my great coachly advice for you today? I’m working hard to take the coaching myself. Going out for a walk in the morning when I’d rather sleep in a little longer, because I know I need the endorphins from the exercise in my system, to help keep pain manageable. Because I know then I’ll drink less coffee and rest better, which will make me less triggerable. Because I know the exercise is good for keeping my anxiety levels down, and while I walk I do relaxation exercises that help me keep my nervous system less triggerable.

We do have some exciting new stuff coming at Free my Brain. We’ll be starting a Migraine Support and Coaching group on September 2nd. We’ll meet by telephone twice a month to work together on goals in managing our Migraines and improving our health. Get support from other Migraineurs and individualized coaching from me, at a fraction of the cost of one to one coaching. Look for the sign-up on the Home page, coming soon.

Right now we have a special for newsletter subscribers, where you can get 40% off of BREESE Relaxation Recordings. Check your email for the coupon code. If you’re not a current subscriber you can subscribe in the 6 Migraine Keys box in the upper right corner of the blog page, and you’ll find the coupon code on the Thank You page.

And though I haven’t gotten over here to write very much, I have been writing articles on Law, Migraines, Disability and Work for Health Central’s My Migraine Connection. Feel free to check them out – I wrote most recently about Work & Disability: Don’t Fall Through the Cracks.

I hope you’re keeping your heads above water too. Expect more from me soon. Let me know how you’re doing, in the meantime! Say hi, let’s keep up the communication. Okay?

- Megan

Swimming image courtesy of David Joyce; rain shower image courtesy of AlmazUK.

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Staying out of the Spotlight

July 22nd, 2009

It’s very uncomfortable to suddenly have one’s vulnerabilities become center stage. I had an odd experience this week. I haven’t met many Migraineurs yet who actually want their illness to be center stage. We want to be understood, we want support and empathy and help where we need it, but not generally to be fussed over and be the center of attention because of our disease. At least, that’s my impression of the many many Migraineurs I have met! Do you agree?

A few nights ago I had a parents’ meeting to attend for a program my kids are involved in.  I’m currently on vacation in a conference center, and the space found for the parents’ meeting was the stage of the auditorium, where they had set up a circle of chairs and turned on all the stage lights.  I stepped onto the stage and in every direction there was a spotlight pointed straight into my eyes. I edged my way around for a bit, trying to find some safe angle, but the lights were just everywhere. As often happens in the face of a trigger like that, I got disoriented. I couldn’t figure out whether to stay or go. I can’t imagine what I must have looked like, staggering around the stage. My husband was there and he kind of guided me to a chair, and sat on the floor in front of me.  I bent my head down onto his back, threw the hood of my sweatshirt over my head and eyes and asked if they could turn the lights down. Someone said they were trying to dim the lights.

Now at this point my face was hidden in my husband’s back, I felt dizzy and disoriented, and I didn’t know if my voice was loud or muffled.  I was worrying about how strange I looked. The woman next to me said something sympathetic and handed me a booklet to further shade my eyes. I thanked her and said, “I’m sorry to seem so dramatic, but those lights will trigger me into a Migraine in no time flat.”

Apparently it wasn’t easy to dim the lights because the meeting started with them still on. My kind neighbor called out, “turn out those lights, we have someone with Migraine problems here!” Several people made suggestions about where else I should sit, and I answered, without picking up my head, “No, then the lights from over there are in my eyes.” My voice sounded whiny and desperate to me.  So, they turned out the lights.

This story is not about other people not understanding. I don’t know whether the people in that meeting understood or not. Whether they understoood or not, they were very caring and responsive. The whole meeting sat in the dusk so that I would not have lights in my eyes. This story is about how mortified I felt to have my vulnerability, my weakness, my Achilles heel, my Kryptonite, right up there, center stage, under the spotlights, for everyone to see.

I worried what everyone thought. Did they think I was being dramatic? Were some of the other people there sitting in judgment, annoyed at sitting in the dark, wishing I would just go away? Did I sound as whiny to others as I felt to myself?

Interestingly, I had a chance to talk about the meeting with one of the other parents the next day (it was a very good meeting, by the way), and I made some comment about having made everyone sit in the dark. She looked confused, and then said, “Oh, was it you with the hood over your head?” So obviously, I was not remembered for that! I guess I won’t go down in history here as the drama queen who made them sit in the dark because I SAID the lights would give me a Migraine!

But tell me, why is it so hard to let people see I am less than perfect?

- Megan

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Blog Carnival Time Again!

July 12th, 2009

It’s your hit and run blogger here, catching up to let you know about two wonderful blog carnivals.

How to Cope with Pain published the June Pain Blog Carnival about a week or so ago (told you I was catching up) with lots of great posts on living with chronic pain.  She has kindly listed teleconferences as one of the posts.

Tomorrow tune in to Somebody Heal Me for the July Headache & Migraine Disease Blog Carnival. There is no theme this time, but there are sure to be a number of great posts as usual.

Hope to talk to you again soon!

- Megan

Carnival Lights image courtesy of Gilberto Santa Rosa

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Quite a Week in Migraine Land

June 27th, 2009

Hello dear readers, I’ve been quiet this week. It started with my daughter’s high school graduation on Monday – where it has apparently become the fashion to cheer for one’s graduates with air horns. Air horns aimed at the back of the head + bright hot sun & humid weather following many weeks of rain + more black storm clouds rolling in by the end of the ceremony + an emotional day = Migraine! By the way it really sounds like Migraine Puppet and I were at the same graduation, or perhaps are living the same life!

I have been blessed with plenty of work to do lately and in the current state of the economy can’t turn much of it away, so I haven’t been able to devote much time out to Migraines this week. I’ve taken my medications and laid down but I’ve been back up working sooner than would be ideal, and with more storms, more rain, more graduation parties, more emotion (though thankfully no more air-horns!), teenagers’ cars breaking down by the side of the road… it’s been quite the Migrainey week. We’re also getting ready for a graduation party of our own next weekend, deep cleaning the house, stirring up lots of dust!

Tomorrow I’m looking forward to taking some time out to talk to Dr. Bill Young about preventing and treating daily headache and intractable Migraine. (Do you think he’ll tell me to slow down?) If you’re registered for the Managing Life with Migraine teleconference series, don’t forget to call in at 4 pm Eastern time. If you’re not registered, there’s still time, just follow the link and sign up, and you’ll get the details to call in.

Hope to talk to you tomorrow!

- Megan

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Posted in Communicating, Managing, Musings | Comments (0)

Headache Carnivals and Awareness

June 8th, 2009

It’s a big week in the world of headache – first of all it’s Migraine and Headache Blog Carnival time again, with this month’s topic of “What people don’t understand about migraines & about what it’s like to live with them” posted over at Somebody Heal Me. Lots of great posts, both on and off topic. If you haven’t checked out The Headache & Migraine Disease Blog Carnival before, it was been created to provide both headache patients and people who blog about headaches with opportunities to share ideas on topics of particular interest and importance to us.

But even bigger news is that it’s National Headache Awareness week, sponsored by the National Headache Foundation.  Educational events are going on throughout the country this week to raise awareness of Migraine and other headache disorders.  A great new tool on the National Headache Foundation web site is Headache U, an on-line resource where you can look up your experiences with headache, create a personal headache profile, and get matched with the right resources for you.

A great week for educating both ourselves and the other people in our lives about Migraine Disease and Headache Disorders!

- Megan

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Posted in Advocacy, Communicating, Weblogs | Comments (1)

Catching Up

June 3rd, 2009

A poem about talking to others about chronic illness.

Catching Up

What’s going on? (pain in my head and struggle every day)
I write and work, children grow and amaze,
I walk the field when I am able and drink in the richness of the world.
Many days my world narrows to this pain in my head, and my struggle:
I must try – help to keep this family afloat, and I haven’t the stamina
or time free from pain
to stay on my feet more than half the day.

Why haven’t I told you?
I could not bear the disappointment in your eyes,
the well-meant advice and suggestions.
This was never who I set out to be.
I did not say I think I will grow up, yes I,
this talented and brilliant child,
I will grow up to be a sick person.
No, this was not my agenda.

Why have I been out of touch?
I could not bear the hope in your voice,
when I have a good day – that now I will be all better,
I could not bear you rushing to me with your cures for the incurable.
I could not bear your pain for me, mirroring my pain for me.
I could not bear my envy of your life.
I have learned lessons costly in the teaching
and too painful for a Christmas letter.

Hope is with me every day. And fourteen years of worsening health,
more Migraines,
I grow older, the future is uncertain.
I have a sensitive system,
I have fought knowing that I have a sensitive system,
and it has cost me.

Now I try acceptance for a change.

What’s new with you?

- Megan Oltman

Writing pen image courtesy of Toshiyuki IMAI.

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Posted in Communicating | Comments (7)

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