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Online Tool to Assess What Kind of Headaches You Have

Migraine, tension-type, sinus, cluster. . . . You know what your headache feels like and the other symptoms you have. Seems like finding a diagnosis would be easy, but it can be quite complicated. Consider these factors:

Headache Central, an educational site sponsored by the Michigan Headache Treatment Network, has a tool to help classify your headaches in medical terms. The online program asks questions about your headaches, determining which questions to ask based on your previous responses. After you’ve answered all the questions, you’re given a page with your responses and possible diagnoses summarized in a doctor-friendly format to print and take to your next appointment.

The program is not intended for you to diagnose yourself but to provide your doctor with a more complete view of what you’re experiencing. Of course, many readers will use the information to guide further online research. Arriving at your doctor’s office well-informed is helpful; so is being open to what they have to say. Think of the headache classification tool a starting point from which your doc can ask you relevant questions (and vice versa) to flesh out your diagnosis and find the appropriate treatment for you.

FYI: The program doesn’t work in Firefox.

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Oliver Sacks Answers New York Times Migraine Blog Readers’ Questions

Renowned writer and neurologist Oliver Sacks describes non-visual auras, correlations between migraine and memory loss, migraine’s connection to strange dreams and more in Answers to Reader Questions on the New York Times migraine blog. Inquiries and responses aren’t about medical advice, but less frequently discussed components of migraine.

Topics covered:

  • Non-visual auras (like hallucinating or distorting sounds or smells, tingling in limbs, etc.)
  • Hormone levels
  • Genetics
  • Emotional changes
  • Creativity and intelligence
  • Bizarre dreams
  • Memory loss

As always, his post contains thoughtful answers and colorful stories.

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Helping Others Understand: A Letter to People Without Chronic Pain

Wish that your friends, family and coworkers had a better idea of what you’re going through? This anonymous letter has circulated on forums and by e-mail for a few years, but is always worth repeating.

Letter to people without chronic pain:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its affects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.

That’s what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying ” You did it before” or “oh I know you can do this!” If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that the “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?

I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be “normal.” I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.

In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.

Someone asked if I thought it was appropriate to share the letter with her family and boss. Will it backfire if the recipients haven’t shown an interest in understanding your pain?

photo credit: desi.italy

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Migraine’s Visual Aura & Hallucinations on the New York Times Migraine Blog

The deep explorations of visual aura and hallucinations in the two latest entries on the New York Times migraine blog provide education far beyond what most migraineurs encounter; including one who writes about headache disorders and migraines nearly every day (me!). Check out the following posts to expand your knowledge.

Patterns
Acclaimed writer and neurologist and migraineur Oliver Sacks explains the neurophysiology of visual auras and describes the patterns, or “geometric hallucinations,” some see during an aura. His intricate depiction is a fascinating eye-opener for those without aura and excellent information for those with it.

Lifting, Lights and Little People
Siri Hustvedt, author and migraineur, wrote of the hallucinations she has had with migraine episodes.

It is comforting to think that visual perception is a matter of taking in what’s out there, that a clear line exists between “seeing things” and the everyday experience of looking. In fact, this is not how normal vision works. Our minds are not passive containers of external reality or experience. Evidence suggests that what we see is a combination of sensory information coming in from the outside, which has been dynamically translated or decoded in our brains through both our expectations of what it is we are looking at and our human ability to create coherent images. We don’t just digest the world; we make it.

You can hear more from New York Times migraine bloggers Siri Hustvedt and Paula Kamen on NPR’s Talk of the Nation. Headache specialist and founder of the Michigan Headache and Neurological Institute Joel Saper weighed in and responded to callers’ questions. Congratulations to Migraine Blog, Migraine Chick and Somebody Heal Me for being mentioned on NPR’s website.

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Making Peace With Pain: Accepting Migraine and Chronic Daily Headache in My Life

Accepting that I may have a migraine or headache every day for the rest of my life is the most effective treatment I’ve had. But how did I get here and what does acceptance mean, exactly? Time. I know, not an encouraging answer, but where I am now is worth all the time it took to get here.

After my occipital nerve stimulator proved ineffective in January 2004, I was devastated. What I thought was my last chance at treatment had failed. Feeling like you have nothing left can suck you into a dark hole. It can also be the motivation necessary to claw back to an enjoyable life even if chronic daily headache and migraine are going to stick around. Most likely, it will be both.

For more than a year, I wrapped myself in the sadness and hopelessness that enveloped me. Mourning losses from my illness was necessary, but I wanted my life back. Even one full of pain and exhaustion was preferable to where I’d sunk. I was finally motivated to find a happier way to be.

Reading The Anatomy of Hope by Dr. Jerome Groopman played a crucial role. He writes: “Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.”

Until then hope was believing I’d find a miracle treatment. Groopman taught me that hope is knowing a happy life is possible even with illness. Finding the joy in everyday life is far better than clinging to desperate desire for a magic cure.

Instant change didn’t follow my aha! moment, but put the process in gear. Now I have days where the thought “I love my life” jumps unbidden in my mind. That never would have happened four years ago. I still have plenty of days that are horrible, but hope lurks even on days I don’t think I can handle it anymore. When I feel OK, I really do try to seize the moment, as the cliche goes. Corny yet true.

The following books have helped me along:

  • The Anatomy of Hope by Jerome Groopman – The first time I read this, it was just an interesting collection of essays; the second time I “got it” and took the messages to heart. That was when I was first beginning to accept headaches as a permanent part of my life.
  • All in My Head by Paula Kamen – A memoir and great information source on chronic daily headache. She recommends Chronic Illness and the Twelve Steps by Martha Cleveland for accepting illness. (Kamen is also a contributor to the New York Times’ migraine blog.)
  • The Chronic Illness Workbook by Patricia Fennell – The same idea as the 12 steps book, but with less of a spiritual focus and is more methodical (for lack of a better word). I prefer this one.
  • Kitchen Table Wisdom by Rachel Naomi Remen – In the self-help/inspiration genre without being over the top pushy or mushy. The thoughts it provokes have been vital to my acceptance of illness. My copy currently has 14 bookmarks in it.