Health Update

It’s been a rough couple of months as my doctors lowered the dose of my pain meds. I’ve been done with the withdrawal process for a few weeks now, but as you may expect my baseline pain is higher now.

I’m trying to adjust to the higher pain levels, but it hasn’t been easy and I haven’t had much success so far. As a result I’m getting much less sleep and it is badly fractured, I have much less energy to do stuff, and I have to put a lot more energy into holding the line against my depression.

The silver lining is that I should be done with tinkering with my meds for the foreseeable future. (Potential exception: My Cluster headaches have been consistently more intense and frequent for a while now, so that may require some intervention if it does not let up.) We’ve been trying new meds, adjusting doses, and whatnot for the past year straight which has been brutal. (Pro: new anti-depressant is working out well; Con: less pain meds.)

My body is so glad that it is getting a chance to rest, and my mind is finally able to stop the constant intense monitoring that’s required with all of the adjustments. That’s particularly important as one of the main techniques I use to manage my pain is to ignore it, but the careful monitoring required me to pay consistent attention to it.

I would greatly appreciate any love, encouragement, gifts, pictures, stories, and empathy anyone has to spare.

Personalized Cluster Headache Scale

I suffer from chronic Cluster Headaches. My meds generally keep them under control and keep them low intensity. On a typical day, I suffer 2-3 long-lasting KIP 2 or KIP 3 headaches.

However, for almost two months now I’ve been hit with a bad cycle of Clusters, getting hit with 2-3 long-lasting KIP 5 or KIP 6 headaches most days. I am exhausted and pretty miserable, though this is hardly the worst cycle I’ve been in. Unfortunately, there’s no way of knowing how long any given cycle will last for me.

For reference, here is my rough attempt to explain how the KIP scale (Cluster Headache pain scale that goes from 1-10) translates to me in particular: 

Cluster Headache (Personalized) KIP Scale

  1. Barely noticeable as a Cluster Headache at all. Equal to a typical person’s “Splitting Headache” that wrecks their day.
  2. A minor Cluster that does not require any alteration to the day’s plans. Equal to the worst headache a typical person has ever had.
  3. Very distracting, but can function as normal if needed. I’m going to be cranky if I don’t have a way to abort this. A typical person has never had their head hurt this bad without physical damage.
  4. We’ve crossed the line from “Good Clusters” to “Bad Clusters”. Can only function with exhausting amounts of concentration. I’m not sure typical person has ever felt their head hurt this bad unless they’ve suffered serious head trauma.
  5. Can only function in short bursts by using extreme concentration. Restlessness is inescapable.
  6. Crossed into “Intense” territory. Pain dominates my mind. Nothing can get accomplished. These are sanity warping.
  7. Pain is overwhelming. I cannot keep from rocking, or banging my head against things, or other physically painful activities in an effort to relieve my pain or otherwise distract myself from the pain.
  8. Crossed into “Devastating” territory. I am incapable of thinking of anything else. My world is literally nothing but pain. I am “lucky”–my Clusters have never gotten worse than a KIP 8. Can be sanity breaking.
  9. Cluster Headaches are known as “Suicide Headaches” for a reason–here’s where some Cluster sufferers start attempting it. You certainly can’t avoid considering it at this level.
  10. Doctors say that Cluster Headaches are the most painful medical condition that humans experience. This is that level. Some Cluster sufferers experience this on a regular basis.

Cluster Headaches

[This post is part of my Medical Conditions Series.]

I suffer from Chronic Cluster Headaches.

Cluster headaches are the sadistic older brother of migraines. Like migraines, they are their own disease, not a symptom of something else. Think of migraines as a rebellious teenager, and clusters as migraine’s methodical, disciplined older brother that has gone through special military training to learn how to inflict pain. Migraines have lots of symptoms: in addition to the head pain, they cause nausea, noise and light sensitivity, auras, etc. In that way, they’re like the rebellious, moody teenager who acts out in all sorts of random destructive ways. And migraines (like teenagers) act out on an unpredictable schedule–you don’t know how long each migraine will last, or when the next one is coming.

But cluster headaches are different–they’re all about focused, scheduled, disciplined pain–none of that other stuff that migraines mess around with. Cluster headaches are professional, punctual, and polite: they show up at the same time every day, cause excruciating pain in one precise spot behind one eye, repeat for a few weeks, and then vanish until the next cycle which can be months or even years later (hence the name “clusters”). The pain is super concentrated–all the pain of a migraine and more–concentrated into one tiny spot. Doctors consider it the most painful condition known.

For most cluster sufferers, each individual cluster headache lasts from 45-90 minutes, and repeats at the same time every day (or multiple times a day) for a few weeks or months. Lucky me, my individual headaches last for 8-14 hours. While my headache clusters started off episodic as 2 week clusters with 4-6 month reprieves, over time the clusters got longer and longer and the reprieves shorter and shorter until I became chronic. Now I get 1-2 attacks a day, every day, with maybe 1 day a month off if I’m lucky.

Luckily my cluster headaches are not as intense as some other sufferers. My worst attacks have only gotten to an 8 (hyperventilating in the fetal position) on the cluster scale (where 9 is catatonic, and 10 is suicidal). Overall, the intensity of each cycle has gotten less intense as the cluster cycles have gotten longer, as if they’re following some weird conservation of pain principle. Now that I’m chronic and have them every day, they are typically only in the 3-5 range (women who have given birth say that a 5 is roughly the same pain as labor).

Fortunately, I’m pretty responsive to treatment. I take Namenda and high doses of Vitamin D help decrease the intensity and frequency of the cluster headaches. I also use high-flow Oxygen and caffeine as abortives for high intensity and low intensity hits respectively, with Imitrex injections as a backup for any hits that get through.

Medical Conditions Series

I have a whole host of medical issues–some are chronic and disabling, and others are episodic or merely disruptive. Over the next few blog posts, I’m going to give a brief description of each of my main conditions and how they affect me. Hopefully, these will help you to see what my disability looks like, how a typical day goes, and why I feel so miserable all the time.

  1. Depression
    I was going to start off this series with Cluster Headaches, but then Robin Williams died and everyone is currently talking about Depression and Suicide. So in an effort to be timely, I’m starting off with this one.
  2. Cluster Headaches
  3. Testicular Neuralgia
  4. Insomnia
  5. “Shockies”
  6. Keloids
  7. Overall