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Archive for the ‘Medicine’ Category

Botox News: Can I do Migraine Education without Getting Nasty?

October 21st, 2010

Have you heard the news? Botox has been approved by the FDA for treatment of chronic Migraine. I first heard it from Diana Lee at Somebody Heal Me, but it’s been in the press this past week. This is great news for many chronic Migraineurs. Health insurers who have been refusing to pay for the highly expensive treatment will now lose the excuse that it is not a standard, accepted treatment. The FDA approval probably doesn’t guarantee they will cover it, but makes it much more likely. Like most Migraine treatments, Botox doesn’t work for everyone. As I understand it, for some Migraineurs, the injections into specific points in their heads and necks paralyze muscles that otherwise would contribute to the triggering of Migraines. With FDA approval, the treatments will be available for a much larger group of sufferers.

I guess some jokes are inevitable. Just for the record, the injections are highly unlikely to be into the same spots in your face that would plump up wrinkles, unless you just happen to have a wrinkle on one of those trigger points. Sorry. But I just ran across someone joking about it, and it got my goat.

A friend of mine who is a M.D. and has a great understanding about Migraine, has been very supportive of me, and also happens to work in a company that manufacturers dermatological products (so you could see she has some professional interest in the topic) posted a link on Facebook to the FDA approval of Botox. I commented that it was great news. Another friend of hers (who I don’t know) commented after me, saying “suddenly, I feel a headache coming on. sign me up!” Okay, I don’t know if this woman is a Migraineur or not and I don’t want to go off half-cocked, but it put me on slow burn. First I kind of shrugged, then read it again and was annoyed and gradually I’m getting that agitated feeling in my stomach… that could lead to a Migraine, among other things.

I’m trying to get at my feelings. The implication that I read there is that it’s a joke that you could get Botox for a “headache,” that people should fake headaches in order to get cosmetic Botox treatments. It trivializes our condition, maybe completely unknowingly, but even so. I was inclined to let it go so as to not drum up trouble, but if I don’t take on an opportunity to educate, I’m not being true to myself.  So I’m going to answer her. If you’re reading this post on Facebook, I already have.

Of course I’d love to really let loose, but I want to educate, not alienate, so here’s what I’m saying:

Migraine disease is a serious neurological illness which is one of the top 20 most disabling conditions world-wide. Chronic Migraine sufferers have Migraines 15 or more days per month. For some of us, Botox helps prevent or lessen the impact of some of the Migraine attacks. The Botox is not injected in places that would help anyone with their wrinkles. It may be surprising, or sound strange, but it’s not a joking matter. I don’t think you intended to offend, but please understand that your comment trivializes a very real disease suffered by 36 million people in the USA alone.

What do you think? Am I doing right by our cause?

– Megan

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Posted in Advocacy, Communicating, Current Affairs, Medicine, Rant | Comments (1)

Speaking to Pharma Marketers

October 16th, 2010

On Thursday of this week I had a great opportunity. I was invited by Jack Barrette of WEGO Health to be on a panel presenting Health Activists’ perspectives to pharmaceutical marketers. The conference was called the Multi-Channel Pharma Marketing Event, and participants were hearing about how to market in a new world of informed medical consumers, health activists, and social media. My fellow panelist was Allison Blass, of Lemonade Life, a diabetes blogger and activist.

So here’s what I think about Migraine and pharmaceutical companies, what I went into this conference with. First of all, pharma companies want to sell their drugs, because that’s what they do, and how they make their profits. So marketers are looking for new and better ways to… that’s right, market their products. Do their companies make too much profit? Are drugs too expensive? Well it is very expensive to develop new products, and takes years and years. I understand this. The fact that insurance companies are run on a profit motive is a harder one for me to take – their motive will never make them want to give us all we need to treat our disease, and the fact that we have uninsured people, and no universal, single-payer system, so some people can’t afford meds at all, and others are at the mercy of insurance companies that ration meds, those are the real crimes. Don’t even get me started!

So how much should pharma companies profit? I don’t know. I don’t know whether they make more profit than say, banks and financial companies. I do know they make something we need, and our system runs on profit. And here’s where the Migraine angle comes in – they don’t make enough of what we need, the basic research hasn’t been done yet, they haven’t developed the drugs, we haven’t had a real new innovation since the triptans, and we need better products to prevent and treat Migraines. Desperately! You with me so far?  What we really need is a cure, as Allison said, so ultimately the pharma companies should be in the business of putting themselves out of business. Because it’s the right thing to do.

In the meantime pharma companies want to get involved in social media, because that’s where not only consumers but opinion leaders are. I asked a number of you on Facebook to tell me what I should say to them, and there was a fair degree of skepticism about their motives. It seemed to me the people I met were decent, committed people, who are selling things they believe in.  As one told me, he’d rather be selling drugs that help people then a lot of other things.

Anyway, Jack asked us to speak on what the rules of the road are, and what we would do if we had 10 million dollars to spend in our health communities. Allison and I expressed things in different ways but came up with a number of very similar ideas. I said, Rules of the Road: you have the power to educate, use it wisely and well.  Don’t try to sell something like Excedrin Migraine as if it were a one-size fits all solution, a cure, and fail to disclose that 1. it doesn’t abort your Migraine, only covers up the pain; 2. it won’t kill the pain for many of us; and 3. it carries a substantial risk of Medication Overuse (rebound) Headache if used more than a couple of days in a row, or a couple of days a week. It was easy to pick on Excedrin Migraine because so many of us Migraineurs love to hate their ads!

As for the Imaginary 10 million, how about spending most of it to get the basic research about this disease done? Support Alliance for Headache Disorders Advocacy and Migraine Research Foundation. Then if they want to spend some money on line supporting our community, sponsor patient education, Migraine diaries, information about a whole life approach to managing Migraine (an approach that pharmaceuticals are only one part of).  Let some more of us who are committed to helping people with this disease become professionals at it by supporting our efforts with paid positions. Life costs money (as Allison said) and people with the passion to help should be able to make a living at it. And if you support and sponsor what our community needs, and are known as good guys, we will be more eager for your products when they are finally developed, and more likely to continue using your products over time, if they do their job.

The audience was great, asked terrific questions, and it was a great experience. Kudos to Jack who had me really get present again to what I am doing and why. As you may know if you read my sparse postings lately, I have been working a demanding day job as an attorney and mediator, and haven’t found much time to be on line lately. Well, I’m lit up and raring to go, so expect to hear some more from me.

– Megan

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The Language of Pain – a review

August 29th, 2010

I recently finished The Language of Pain, by David Biro, M.D. A practicing physician in Brooklyn, NY, Dr. Biro also has a PhD in literature. This interesting combination of educational disciplines, together with Dr. Biro’s own experience as a patient with a blood disorder, leads to his thoughtful and philosophical writing on the isolating experience of pain. I presume that his earlier book, One Hundred Days: My Unexpected Journey from Doctor to Patient must focus more specifically on his personal (and unexpected) experience in bridging those worlds. The Language of Pain is a more general and outer-focused book, discussing how profoundly isolating the experience of being in pain is (be it physical or emotional pain) and how important it is to find means of expressing the experience.

The Language of Pain is an interesting read, pointing out that an understandable expression of the pain one experiences is necessary both to get proper treatment for the pain (or the underlying condition that causes the pain), and to keep people in pain from being isolated from their families, friends and community. Drawing on many examples from art and literature, Dr. Biro explores how metaphor enables us to take the diffuse experience of pain and put it in terms that others can understand. The book is illustrated with some of Frida Kahlo’s gripping paintings, as well as patient-generated works of art gathered by Deborah Padfield in a pain clinic in the UK, and other art. We read many passages from literature describing pain, disease, and bodily peril, from works by Tolstoy, London, Crane and Joyce, among others.

This is not a long book, but it took me a long time to finish. I found that some of the descriptions of pain were, well, painful for me to read. It may be that for one living with chronic pain, this book hits too close to home. Nor is it an easy read. His points are excellent, but perhaps Dr. Biro couId have expressed them in a more accessible manner. This may sound funny coming from me; an inveterate user of big words. I could have used less literary and philosophical analysis and more practical examples of how finding language for their pain has helped pain patients.

The book is subtitled “Finding words, compassion and relief.” Without doubt the writing is compassionate, and ignites the reader’s compassion. There was inspiration for me personally in the examples of words used to express pain; certainly I remembered them in my own moments of pain, and tried to be more conscious of expressing myself. It is the “relief” that I would like to have heard more of in the book. Maybe because relief from pain is something I long for in my own life, and for other sufferers. It wouldn’t be fair for me to fault Dr. Biro for not providing a magic wand! He pulls it all together very well in his postscript, stating:

More than just communicating one person’s experience, the metaphors of great writers contribute to our collective experience of pain. They add to our ever-growing repository of language, and to our ever-growing understanding of what it means to be human. Indeed, we should think of our great artists no differently than our great scientists. Both have profoundly practical goals; each works to help us understand and talk about what is not fully understood or communicable. But where the scientist shines his searchlight on the objective world, the artist strives to illuminate the subjective one.

One of the things that fascinates me most is the meeting and communication of our left and right brains, our analytical and intuitive sides, the scientist and artist in each of us. I love thinking about what having both an MD and a PhD in literature would bring to a person’s thinking and understanding of the world. Dr. Biro thank you, you have done an elegant job of sharing your thinking with us. I’ll expose my own prejudices as a coach when I ask, next book, would you give us a little more of how to use those two sides of the brain for relief in our own lives?

– Megan Oltman


To keep the FTC happy I will disclose that the publisher asked me if I might like to review the book in my blog, and sent me a free copy so that I might do so. They did not pay me to puff the book, and I won’t receive anything else from doing this review unless some of you decide to link in to Amazon and buy it there, which would net me a few pennies per book. The publisher has no doubt given up on me, as they sent me the book before it’s publication in January of this year.

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Posted in Books, Communicating, Managing, Medicine | Comments (0)

A Certain Level of Brain Freedom

August 22nd, 2010

I am enjoying a long stretch of freedom from pain in the brain. Hooray! I have had only six Migraines since late June. Less than one a week! A better rate than I’ve achieved in the past three years, at least. I began taking the blood pressure medication Lisinopril in late June, and this seems like a winning combination for me. My current regimen includes:

That’s about 15 pills in the morning and 6 at bedtime. If that’s the price of freedom, I can live with it. As always, an unintentional experiment proved how well this regimen is working for me. A few weeks ago I had a Migraine on a Thursday evening and, as I sometimes do, forgot to take my bedtime pills as I was treating the Migraine and everything else went out of my head. The next day we were leaving just after work for our cousins’ beach house and I got up early in foggy post-drome and packed for the weekend before work. I forgot to pack my pills! So just as Danny was leaving the house to come meet me at my office, I called him and asked him to pack them for me. He did that, but when we met up and transferred the bags from the car he was driving to the other, the bag of pills got left behind. We discovered this at about 10 pm at the beach house. So I went without pills for a second night in a row, and missed my morning doses Saturday morning. Danny was a hero and drove over 6 hours round-trip to go get my pills so I could stay through Monday. Two nights and a morning without had a cumulative effect, though, and I had a pretty severe Migraine Sunday night.  It is now two weeks later, took my pills every day and no Migraines in that two weeks!

My Migraine specialist, Dr. Bill Young of Jefferson Headache Center, had said to me , “Six to seven Migraines a month isn’t good enough. We can do better!” (Love this guy! Compare with the last guy who thought I should be satisfied with reducing from 10 a month to 7.) So when I went to my last appointment in late June with the news that my blood pressure had been running high, for the first time in my life, he was excited! I had to tease him about that, how many physicians would say, “Oh good!” on learning that their patient had developed high blood pressure! But he explained that anti-hypertensives can be excellent Migraine preventives, but can’t be prescribed if the patient’s blood pressure is too low. He was confident that the two medications together, along with all my other supplements, would produce better Migraine prevention results for me. And so far, so good! I try not to really measure a trend until it’s been going on for several months, but early results look promising. I am loving the extra time and energy I have for hanging out with family and friends, and getting some chores and projects done around the house. Now if I could just manage the fibromyalgia…

For any of you who see doctors who only know a limited number of Migraine preventive options, or who aren’t comfortable with combining several medications, or who aren’t knowledgeable about supplements, find another doctor! If you aren’t doing daily relaxation, meditation, yoga or another practice to calm your nervous system, get on it! It can take time, but most of us achieve a significant level of brain freedom.

Hope you’re doing well. Leave me comment and let me know how you’re getting on, okay?

– Megan

Smoo cave waterfall photo courtesy of Subflux.

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Botox for Head Implosion, not Explosion?

February 17th, 2010

A new study of 18 Migraine sufferers reported in the Archives of Dermatology Monday indicates that Botox may be helpful for those who describe their pain as “crushing” or “eye-popping.” That’s an interesting new distinction. So, not so good for those of us, like me, who walk around saying “My head explode!”

It’s hard to say how significant a study of 18 patients is, and previous reports on Botox for Migraines have been mixed at best. This study reports an average reduction from 7 Migraines per month to 1 Migraine per month, among those who responded to the Botox. You can read a bit more about the study here: Does Botox Stop Some Migraines? in the Minneapolis – St. Paul Star Tribune. What really interests me, though, is the fact that the description of the pain itself is indicative of whether the Botox will help or not. Pain is so subjective, and so difficult to measure, it’s fascinating that there could be a correlation between how we experience the pain and the mechanics of our Migraines.

I’m imagining a time when you can describe your pain, and get a specific treatment for it. Head imploding? Try this. Head exploding? Try that. What about that one where little people with grapefruit spoons are trying to scrape your brain off the inside of your skull? I hate that one.

– Megan

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Hormones, Migraines and Menopause

February 14th, 2010

Migraines happen when those of us with excitable nervous systems – nervous systems prone to Migraine – experience a change in our external or internal environment that triggers the Migraine process. This doesn’t explain what causes Migraine, or why some of us have nervous systems that react like this. It just describes the process. Hormonal fluctuations are one of the internal changes that can trigger a Migraine. Migraines are not “caused” by hormonal fluctuations, but hormones can be a big factor for many Migraine sufferers. One theory about why more Migraine sufferers are female, by a proportion of 3 to 1, is that the fluctuations of our hormonal cycles make us more susceptible. Interestingly, up to puberty the numbers of male and female Migraine sufferers are more even; many more girls join the ranks with the onset of puberty.

It’s hard to generalize with this disease; people are triggered by so many different things. Some women don’t notice any particular effect of hormones on their Migraines, others seem to be only triggered by hormones, and for some hormones are one of a host of possible triggers.  That said, it is common for women to experience an increase in Migraines during peri-menopause, the period of years leading up to menopause when their hormonal levels are changing, and often beginning to drop off.

I had a sharp increase in Migraines, as well as onset of fibromyalgia, and increase in IBS as I moved into peri-menopause. I have found a bio-identical, bio-mimetic hormone replacement therapy which I believe has helped my overall health quite a bit. I started the program about 4 years ago. It has not had a noticeable effect on the number of my Migraines but has definitely decreased their severity. It has given me more energy and stamina overall, which has helped keep the fibromyalgia fairly mild, I believe. It also did away completely with many symptoms of menopause that were troubling me – hot flashes, night sweats, anxiety, insomnia, vaginal dryness. The program I use is known as The Wiley Protocol.

T.S. Wiley is a cancer researcher who hit on this method of replacing hormones in a pattern that mimics the hormonal patterns of a normal menstrual cycle. Her book, Sex, Lies and Menopause explains in great detail the effects of hormones on our bodies, on aging, and how she developed her protocol.

As I understand it, pharmaceutical HRT (hormone replacement therapy) chemically creates molecules which are similar to, but not identical to, the hormones our bodies produce. If the pharma companies are not inventing a new substance, they can’t patent it or make much money from it, so you don’t find these hormones advertised widely. Bio-identical HRT chemically synthesizes the exact same molecule our bodies produce, so that when we use it our bodies treat it as if we had produced it ourselves. Bio-identical HRT is made by compounding pharmacists. There are many producers of bio-identical HRT, some of them prescribe a constant level of the hormones to be used all the time. The drastic side-effects and health complications that come with pharmaceutical HRT are caused, Wiley says, by the fact that these are not molecules our bodies recognize, as well as by the fact that the hormones are dosed at a constant level which is not normal for our bodies. Bio-identical HRT can also cause problems when dosed at a constant level.

What is different about Wiley’s program is that the hormones are not just bio-identical, they are “bio-mimetic.” Wiley invented a method of dosing the hormones so they mimic the menstrual cycle of a healthy 20 year-old woman. The theory is to recreate a time when we are biologically at our healthiest, and giving our bodies the ebb and flow that is normal for them. Some women have bad Migraines when they are younger, and bad menstrual Migraines throughout their lives. I don’t know if the Wiley protocol would help them with their Migraines. But if the Migraines began or drastically increased in menopause or peri-menopause, it makes sense to me to replace the hormone levels of a time when you didn’t have the Migraines! The drawback, I suppose, is that as long as you are on the protocol you will menstruate. There are women in their 80’s on it, getting periods. But I have found that my periods on the protocol are very regular and fairly painless. The horrid PMS and menstrual Migraines I got in my peri-menopause years are gone, as are the terrible cramps I had, both when I was young and again in recent years.

Wiley does suggest that Migraines can be treated by spreading the hormones more evenly throughout the day, instead of just in the usual morning and evening doses. I have not tried this – it makes a certain degree of sense, in evening out any hormonal fluctuations during the day. Hormones do not seem to be the only thing that triggers my Migraines, though.  If you read Wiley’s book or visit the site you might get the impression that the protocol is a panacea for all problems of aging. I don’t know if I buy into it that far, and as I said it has not been a complete solution for my Migraines. It has definitely made a big difference for me, though, and you may want to investigate it as a useful component of your toolkit.

– Megan

Neither T.S. Wiley nor the Wiley Protocol has given me any payment for reviewing these products. If you click on the link to the book and buy it from Amazon, however, I will receive a small referral fee.

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Support the Future of Headache Medicine in the U.S.

December 9th, 2009

The AHDA (Alliance for Headache Disorders Advocacy) makes us aware of an opportunity to make a difference in the future of headache medicine. Please take action today to support the the Klobuchar / Collins Amendment to the Senate Health Care Reform Bill. Apparently the bill sets up bonus Medicare payments to doctors from certain primary care specialties. This will give an incentive and encourage doctors to enter and stay in primary care practice.

The AHDA tells us:

Physicians who specialize in headache medicine provide primary or principal care for patients with headache disorders and more than 90% of them are neurologists. Unfortunately, neurologists have been unaccountably left out of eligibility for these bonuses. If the Health Reform Bill passes with the incentive program as it is written, it will significantly undermine the ability to recruit and retain doctors to the field of headache medicine. Headache doctors are already very scarce, and it will become that much harder to find one.

Senators Klobuchar of Minnesota, Collins of Maine and Brown of Ohio, created a bipartisan amendment to the bill that would add neurologists to the Medicare incentive program. The AHDA is backing the amendment along with other groups that support sufferers from neurological diseases, including the American Academy of Neurology, the ALS Association, the Parkinson’s Action Network, the Epilepsy Foundation, the Brain Injury Association of America, the Alzheimer’s Foundation of America, and the National Multiple Sclerosis Society.

In five minutes or less, you can add your voice to support for the Klobuchar / Collins Amendment and help encourage doctors to go into and stay in headache medicine. Just go to the AHDA’s special dedicated page: Email Your Senators to Support the Klobuchar/Collins Amendment. They’ve designed it to be really easy – please just take a few minutes and do it now! That is all.

– Megan


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Triptans in Pregnancy

December 3rd, 2009

Teri Robert at My Migraine Connection reports today on a study on use of sumatriptan (Imitrex and generics) and naratriptan (Amerge) to abort Migraines during pregnancy. The article is well worth a read. Migraines, Triptan Safety, and Pregnancy. The study is preliminary, but indicates that the overall risk of birth defects is not raised significantly (from 4% general risk to 4.6% risk in the study) with use of sumatriptan. There was not enough data to draw a conclusion as to use of naratriptan. This is potentially good news for pregnant Migraineurs. Although the results are preliminary, it’s well worth discussing with your doctor if you are experiencing Migraines during pregnancy.

– Megan

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Medication Basics

November 3rd, 2009

I’ve been getting a lot of medication questions from readers lately. Of course what we are all looking for is something that will help us feel better, without side effects that mess up our lives! I am not a medication expert. I’m not a doctor, and while I am interested in science I haven’t taken a science class since college, many years ago! What I do is help people with Migraine disease manage their lives, inside of the resources that are available, part cheerleader (you Can do it!), part manager (here’s how – here’s when – let’s plan it), part personal trainer (yes, just stretch a little further, let’s keep it going), part teacher (here’s some knowledge and information that will help).

In my view, medication is a partial solution. We have a brain chemistry that causes us to have Migraine attacks – that chemistry can be partially addressed with medication. We can also have a large impact on our nervous systems through regulating our lives – getting regular sleep and relaxation, eating properly and regularly. Learning our triggers and getting attuned to our energy levels, we can reduce our Migraines. With a combination of medication and this kind of self-knowledge, we can reduce Migraines significantly.

That said, here is some basic information about types medication for Migraine.

  1. anticonvulsants, the same kind of medications that are prescribed to treat epilepsy, such as Topamax or Depakote;
  2. antidepressants, several different classes of these drugs can help prevent Migraines, generally prescribed at a much lower dose than used to treat depression; and
  3. antihypertensives, again, several different classes of these drugs are effective for some people.

No preventive medicine will prevent every single Migraine, and different ones work, alone or in     combination, for different people. A very complete list of these medications is available at My Migraine Connection: Migraine Preventive Medications – Too Many Options To Give Up!

Over the counter pain medications, even if they have “migraine” in the name, do nothing but cover up the pain for a short time, and are not truly Migraine medications. They may be the only alternative for you at a particular time, if you don’t have prescription medications or you can’t take them. But several cautions:

If you have 3 or more Migraines per month, Migraine specialists will consider you a candidate for preventive medication. Most Migraine specialists will prescribe a preventive, abortive and rescue medication for you, so that you can prevent as many Migraines as possible and treat the ones that happen anyway. If your doctor has run out of options, or you are working with a doctor who is not a Migraine specialist, you can get great information about treatment options at My Migraine Connection: Preventive, Abortive, and Rescue Medications – What’s the Difference?

– Megan

Magic pill image courtesy of [O*] ‘BharaT.

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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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