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Posts Tagged ‘migraine specialist’

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

Tags: medical care, migraine specialist, self-advocacy
Posted in Communicating, Medicine | Comments (5)

Time for a Change in Medication

May 23rd, 2009

I am stubborn and it takes a while to convince me. At this point I have to finally admit that Topamax is not helping me very much. I diary very carefully and keep statistics on my Migraines, and I can say that since I have been on the Topamax I’ve had about a 20% reduction in my Migraines and overall head pain. Better than nothing, but not much to write home about.  I started on 25 mg in the evening, tried that for a few months, and the first two months saw my Migraines go from 8 – 10 per month to 5 – 6, but I think that was a fluke, because every month since then has been back up in the 6 – 8 range, which is average for me.

My doctor suggested I take the dosage all at night, so that any sleepiness and cognitive side effects would be mostly worn off by morning. This was okay as far as it went, but I discovered after a while that I was having an awful lot of evening Migraines. I also learned that Topamax is pretty well out of your system after around 22 – 23 hours. So the level in my bloodstream must have been getting pretty low by evening, and Migraines were breaking through at that point. When I pointed that out to my doctor, he said that he wasn’t too concerned about it “just for headaches,” he’d be more concerned if I were on the medication for seizures. I have to say I’m getting a bit concerned with a headache specialist who uses the phrase “just for headaches.”

I decided to split the dose evenly between morning and evening and the Migraine preventive effect definitely increased somewhat, but the cognitive side effects became much more noticeable. So much so that after a month on 75 mg I decided it was intolerable; I was getting next to nothing done in the course of a day. So my doctor was certainly right that taking it all in the evening lessened the side effects, it just lessened the main effects as well! I went back down to 50 mg two weeks ago.

But even on 50 mg, I’ve been so slow I am hardly getting anything done and I have almost no days where I am full of energy. I just don’t feel like me, at all. I cut down the Topa to 25 yesterday, as per schedule with my doc. Well I took this morning’s half pill (12.5 mg) and felt all my energy and alertness just drain out of me within about 15 minutes – okay, now I’m eager to be done with the stuff!

The problem is where to go next. My doctor is recommending amitryptaline, an old tri-cyclic anti-depressant. Some people experience sleepiness, fatigue, and weight gain on it. I read on line that some of the top Migraine specialists don’t prescribe it because it is “primitive.” It’s actually off the market as an anti-depressant, but for Migraine prevention is prescribed at a much lower dose than for depression. On the other hand, some people experience no side effects.

I’d like to propose some alternatives to my doctor, but I’m feeling a little overwhelmed by the research involved. I look at side effects lists and I don’t like any of them. I read others’ experience but I know that what was true for them won’t necessarily be true for me. I just know that 6 – 8 Migraines a month is too many. I’ve had worse, and many of you out there live with worse. But I am sure I can do better!

– Megan

Still looking for that magic pill!

Block head image courtesy of Stefan; magic pill image courtesy of [O*] ‘BharaT.

Tags: migraine prevention, Migraine preventive medication, migraine specialist, Topamax
Posted in Communicating, Managing, Medicine | Comments (7)

Being Prepared to See the Doctor

July 8th, 2008

I’m a proponent of doctor/patient partnership.  When I see a new doctor, I am listening and looking to determine if this doctor is going to be a partner with me in my health care.  I can’t thank Teri Robert enough for all the guidance in her excellent book Living Well with Migraine Disease and Headaches on how to be a partner with your doctor and get the health care you need and deserve.  It’s easy to see when you are not getting it – a little example is the neurologist I saw in February, who:

1. spent less than 10 minutes with me on a first appointment;
2. glanced at my detailed migraine diary and health history for about 45 seconds and handed it back to me;
3. was visibly impatient as I ran down my list of questions;
4. told me I should contact him between appointments only “if there’s a problem,” not for questions; and
5. clearly fixed on one point – that I have had allergic reactions to some medications – and would not even consider a trial of preventive medications.

With 20-20 hindsight and lots more preparation I am off to a new Migraine specialist today.  I found out ahead of time that he spends a full hour with a new patient, and that his practice is restricted to treating migraines and headaches.  Two big points in his favor.  It’s easy, though, to fix on how we want the doctor to behave.  I want to explore what it takes for the patient to be a partner, as well.

I spent most of yesterday morning preparing for this appointment.  I have:

1. a bulleted list of my current conditions;
2. a description of my typical Migraine symptoms, severity, and frequency, before, during and after the headache phase;
3. a list of all my current medications and supplements, with dosages;
4. a detailed year-by-year health history, starting in childhood, and describing illnesses, injuries, when various chronic conditions began, etc;
5. a list of my questions with space to write down answers; and
6. a print-out of the past seven months of my Migraine and Wellness calendar (monthly) and daily diary.

Thanks again to Teri Robert for all the preparation advice on her site and on My Migraine Connection (Working with Doctors), and to MJ of Rhymes with Migraine for her excellent post “Communication” where she lists her preparation steps (mine are nearly identical with hers).

Beyond checklists, though, I think my biggest job is to be sure I have fully expressed all my concerns, to be sure I understand what the doctor tells me, and not to leave with any questions un-addressed.  Cross your fingers for me; I’ll let you know how it goes!

– Megan
Here’s to great health care for all of us!

Handshake image courtesy of Aidan Jones; checklists image courtesy of Viv Evans

Tags: health care, migraine diary, migraine specialist
Posted in Advocacy, Medicine | Comments (3)