Door Injury Prevents Typing

After slamming it in a door, hard, my finger is so swollen and numb that I can’t type much. I reimbursed myself for pain and suffering by buying the cute scarf I went in for. I’ll see next week if it was a fair trade.

Is Chronic Daily Headache Easier to Live With Than Migraine?

calendarSometimes I think coping with chronic daily headache is easier than with migraine. I have both but lately have focused on migraine in life and on this blog. Time to remedy that.

Predictability is in chronic daily headache’s favor. I wake up each morning with some degree of headache. Sometimes it will be a full-blown migraine, but often it is mild to moderate. Knowing what to expect somehow makes it easier to anticipate and enjoy the low-pain days.

The shadow of a potential strike is always with people with less frequent migraine episodes or other headache disorders. Hart, whose migraines visit an average of once a month, thinks five or six times each day that one is coming on.

I never know if my chronic daily headache is just getting a little worse or if the building pain is an imminent migraine. Not having visual auras and having hard-to-pin-down warning symptoms is part of the problem. Still, I don’t check for a migraine throughout the day. Or maybe I do and just don’t realize it.

Chronic daily headache is not as well-known as migraine and is often dismissed by doctors as attention-seeking or exaggerated claims. Friends and family can wonder the same thing. Patients themselves are perhaps the most concerned. Maybe they’ve done something wrong or haven’t been a good enough patient. The guilt and self-doubt can be overwhelming.

My original thesis for this post is that living with chronic daily headache is easier than with migraine. After letting my thoughts flow through my fingers, I’ve proven myself wrong. Rating them may be impossible. They are both life-altering and miserable. The Pollyanna in me says they both have positive aspects too. You know, all the cliches: I’m a better person for it, I live life more fully, I’m more in touch with my body.

I end this post thinking that chronic daily headache may be harder for me. Maybe I resent it more than I do migraine. Anyone with chronic daily headache and spikes of severe pain, migraine or not, do you have a “preference”?

Paula Kamen writes about chronic daily headache on the New York Times migraine blog. Leaving the Rabbit Hole, her latest post, is an eye-opener. Be sure to check out her radio interview too.

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Headache & Pain Blog Carnivals

Check out February’s blog carnivals on headache and pain. Somebody Heal Me is hosting the Headache Blog Carnival, which is about migraine and romance. The Pain Blog Carnival is up at How to Cope With Pain.

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.

Trouble Thinking on Topamax? Study Finds “Language Disturbances”

Migraine preventive Topamax (topiramate) has long been associated with trouble thinking, hence the widely used nickname of Dopamax. A recent study indicates that some people have trouble with language while taking Topamax. Some “language disturbances,” as the authors call it, include:

  • Finding words
  • Substituting a word with another unrelated word
  • Taking forever to get a thought out
  • Meshing words
  • Naming objects

According the Reuters article, “Language disturbances generally occurred within the first month of treatment, were of mild severity, and did not require further adjustment of dosages or discontinuation of topiramate.” I’m not sure what that means. Did the language disturbances subside after a month? Does “mild severity” mean that participants chose to stay on the drug even with the side effects?

The abstract of the original article in the journal Headache, Language Disturbances as a Side Effect of Prophylactic Treatment of Migraine, doesn’t answer these questions, but does raise others:

Conclusion.—It can be hypothesized that a disorder such as migraine, which involves numerous cortical and subcortical circuits implicated in the transmission and behavioral and emotional processing of pain, represents a facilitated substrate for the occurrence of language disturbances due to topiramate. This could be the expression of a more generalized impairment of cognitive processing. These aspects should be investigated in prospective studies involving larger migraine patient samples.

My interpretation: The make up of a migraineur’s brain is such that Topamax’s language side effects can flourish. Language problems could be only one part of overall impaired thinking. I believe this means that Topamax impairs thinking, but most migrainuers will attest that our minds are fuzzy even without Topamax. That’s the research I want to see.

Do these findings fit with your experience of Topamax? Take The Daily Headache’s Topamax & migraine survey.

Sunny Weather = Fewer Migraines? The Everlasting Hunt for Triggers

Seattle from Kerry ParkYummy food, Rock Band, neighborhood walks, warm weather. Mild chronic daily headache levels and nothing more than moderate migraine symptoms. That’s what the last four days have been like for me. I’ve been so happy.

Is the convergence a coincidence? The good mood and beautiful weather certainly go together; the mild pain and weather do, too. On the big question, if mild pain and great weather are related, I have no answer.

Most people with migraine — I don’t know about other headache disorders — will tell you that weather is definitely a trigger. Researchers and headache specialists agree. Unfortunately, data are sparse and self-reports of headache pain and weather connections are inherently flawed. According to a Mayo Clinic neurologist,

Several studies suggest that weather changes trigger migraine headaches in some individuals. Study results indicate that some people who have migraines appear to be more sensitive to weather changes, such as changes in weather patterns, temperature, absolute humidity and barometric pressure. The mechanism by which these factors may trigger migraines in these individuals isn’t known.

There’s no clear evidence of a link between weather changes and other types of headaches.

Changes in weather patterns, temperature, absolute humidity and barometric pressure are potential triggers. Anyone with migraine is prone to a migraine episode from any change in weather? A little vague, isn’t it.

This is no different than saying I’m more likely to trip on a curb when the sun is shining than when it isn’t. Finding a reason should be easy. Some possibilities: I spend more time on sidewalks when the weather is nice. I’m looking around and not paying attention. Or the shoes I wear when it isn’t raining don’t fit as well as my winter shoes. Or the sun is so bright I can’t see the step. Or there are so many people in the crosswalk I can’t see where I’m going. Or the coffee I had made me shaky.

You get the point. Isolating variables in everyday life is impossible. Maybe two or three parts of my tripping scenario are to blame. Could be just one or something altogether different. I could trip on a Tuesday and again on Saturday. Unlikely that they will have the same cause.

I understand all this rationally, but still want to know what’s triggering my migraines! I’m second guessing every possible angle. Funny that when my chronic daily headache or migraine is bad I search for a reason. And when they are good, I search for a reason. Sounds like someone has control issues.

I cannot change the weather and I haven’t had any luck in tracking its relation to my head. Even if I could know when the weather would trigger a migraine, I don’t know if I’d want to. I don’t care if I can predict a migraine two days in advance. I can’t change it and I’ll spend the interim anxious it will hit any moment.

Have you found a strong correlation between weather and your migraines or headaches? Is it useful information to have? Answer on the online support group and forum or leave a comment below.

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.

Thats 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