Tonight's picture was taken in July of 2009. Literally a month before we found out that Mattie's cancer was terminal. As you can see Mattie was pictured with the Lego model of the Taj Mahal. Which he built with Peter! This took them days to put together, but it kept them very busy, focused, and working together. Which was a wonderful project to have at our disposal because otherwise Mattie would get very restless, depressed, and of course trying to manage and cope with all of his pain and symptoms was at times too much to bear.
Quote of the day: Cluster headache is probably the worst pain that humans experience. I know that is quite a strong remark to make, but if you ask a cluster headache patient if they've had a worse experience, they will universally say they haven't......women with cluster headaches will tell you that an attack is worse than giving birth. ~ from the Cluster Headache Support Group Facebook Page
For the past two months I have been struggling with a headache. Which is nothing new in a way, since I am a daily headache sufferer. I have been dealing with daily headaches since 2002, after I gave birth to Mattie. I have gone through different neurologists in the process. So I have been at this for years. After Mattie died, I switched neurologists, and my current one, though I feel he lacks personality, seems to understand my condition. He ruled out in the beginning the usual suspects like tumors and other problems, and once that was dealt with, then obviously he had to understand what was going on. In my case that is hard since I have daily headaches and migraines and it is isn't easy for me to determine when a migraine is coming on, since I always have a headache.
When I contacted my neurologist today to update him on my situation, he suggested using a bridge therapy for my already in place preventative treatment. I have heard him using the term "cluster headache" with me before, but honestly that meant nothing to me. To me I had chronic daily headaches and migraines. But today, I actually looked up cluster headaches, and I see, indeed he is correct, I do have cluster headaches and I am in the .05% of headache sufferers. I know there is one thing about both Mattie and I, we never do anything that is typical. Now the question becomes how to treat this nightmare because this headache has been nicknamed the "suicide headache" and I feel this is a very applicable name. The pain is horrific, as if your head could explode and your eyes pop out of your head. They say these headaches come in cycles which can last from weeks to months. I am clearly dealing with months, and they are common in the spring and fall. For those of you are interested, more information is below.
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A Guide for the Cluster Headache Sufferer
So you've been diagnosed with Cluster Headaches, the
"worst pain known to humans." Now what? Well one thing that you'll
quickly find out is that there is no silver bullet for alleviating the pain of
cluster headaches. In fact, in many cases it takes so long to come to a
diagnosis that you may have already been through several drug trials with your
physician or neurologist in order to rule out other maladies. This is not at
all surprising because cluster headaches are a primary headache type. In order
to diagnose a primary headache type, your doctor must first rule out secondary
headache types, including headaches caused by trauma, lesion, or tumor. This is
for your safety, but it can certainly be frustrating going through the various
diagnostics with no real pain relief.
The average time to diagnosis is actually several years. This is largely because the much of the general medical community has never encountered cluster headaches and knows little about them. It is a very rare illness, somewhere between .03% and .05% of the population. For this reason, and to ensure proper treatment, it is important to go to the right doctor. Your general practitioner or family doctor may hazard a guess that you have cluster headaches, but by and large, they do not see enough patients with this particular disorder to know enough about it to prescribe the right treatment. A good indicator that you are on the wrong path is treatment of cluster headache with painkillers - aspirin, ibuprofen, naproxen, Vicodin, hydrochodone, Oxycontin, morphine, etc. These medicines have their place, but generally do not work very well for cluster headache and they set the stage for prescription medication dependency. Cluster headache is a life-long ailment for most and there is no known cure. It may come and go over time, but typically will return at some point. You need to get on the path of preventing versus numbing the pain.
General neurologists may be more likely to have studied
about cluster headaches, however many have never seen a case. A neurologist
headache specialist, on the other hand, has a focused practice on evaluating
and treating headache sufferers and will undoubtedly have more experience and
education related specifically to cluster headaches. Consider also that
choosing the right doctor for your headaches is likely a long-term decision,
and a long-term relationship. Side up with a good doctor partner that you like
and trust to help guide you through it.
Triggers
For many cluster headache sufferers, there are specific
foods, substances, or conditions that can trigger an attack. Typically these
are consistent for an individual but are not necessarily the same for all CH
sufferers. Some common triggers are:
- Alcohol of any type while in cycle. Red wine and hoppy beers tend to be immediate triggers for many.
- Processed food preservatives, especially monosodium glutamate (MSG) and nitrates used to preserve meats. MSG is most noted in Chinese food, but is also used in many soups and other canned foods. Nitrates are used fairly heavily in bacon, sausage, ham and many luncheon meats. It is possible to find these meats with no nitrates.
- Carbon monoxide or petroleum fumes. These can trigger strong attacks.
- Significant physical exertion, although for many this is a good way to relax and does not introduce an attack.
- Inhaling smoke. Although many cluster headache sufferers are smokers, inhaling indirect smoke can be a trigger.
- It may take a while to determine your specific triggers but over time you will learn what to avoid. If you know it's your trigger but you decide to use it anyway, well, you know the risk.
There are three types of treatment for cluster headaches:
- Abortives are acute treatment for the immediate relief of cluster headache attacks
- Preventatives, or prophylaxis treatment, intended to prevent the occurrence or reduce the severity of attacks
- Bridging therapies that are a type of immediate but short-term preventative while longer term preventatives are titrated to full dose
http://www.theatlantic.com/health/archive/2013/11/cluster-headaches-the-worst-possible-pain/281524/
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