A little more about me – Cluster Headaches

Cluster Headaches - JD FletcherThose you that have known me for some time know I suffer from cluster headaches. From Wikipedia:

Cluster headaches are rare, extremely painful and debilitating headaches that occur in groups or clusters. They may also be described as “suicide headaches”, a reference to the excruciating pain and resulting desperation that has culminated in actual suicide.

A lot of people think they’re migraines, but they’re not. They rate much higher on the pain scale than a migraine. They affect men more than women. They are fast onset headaches, so fast that oral medications don’t work, I have to give myself an injection of Imitrex when I get one. There is the other difference – where migraines happen ever so often, clusters can happen in my case 3 to 4 times per day over a 6-8 week period of time. And when they’re done, they’re usually gone for a year. I’m lucky about that, some people the remission only lasts for a few months or so. Anyway, I found this video on YouTube, and it’s scarily eerie to what happens to me when I have to suffer through one (fortunately that isn’t too often).

10 thoughts on “A little more about me – Cluster Headaches

  1. Boy, can I relate! I have bouts with headaches so intense they leave me screaming. One six-week period found me in the emergency room 5 times for injections of pain medication. It’s hard to convince people who don’t experience these sorts of intense headaches how awful they are. Most folks think you should be able to pop a couple of Excedrin and go on with life. If you’re suffering through this now, I wish you a speedy recovery!
    ~ Jim Bohannon

  2. Been having them for about 3 weeks now. Sometimes the prophylactic medicine works well, sometimes not so much. My only hope is that they’re gone by my wedding (9/29).

    I have been to the emergency room 3 times for them. Most of the time it’s because I’m beyond the amount of Imitrex I can take in a 24 hour period; then you’re on your own. Thank Glaxo for creating the 4MG injection because that means I can treat 3 headaches a day that way – I rarely have more than that. (But let’s not talk about the fact dealing with the insurance companies to get enough Imitrex to last through a cycle is worse than dealing with the Russian mafia).

  3. My college roommate suffered from tremendously horrible headaches – she thought they were migraines, but after seeing that video, I have to wonder. They were much more like this. I cannot tell you how many nights I did my studying in the waiting room of a hospital while I heard her cry and wail as they got her doped up enough for me to take her back to our dorm in someone’s borrowed car.

    Spencer, I hope this round is over before the wedding, too. Be well.

  4. Yeah – the emergency room sucks because usually that means I’ve had a headache for hours without relief. Pain medications such as Percacet or Vicodin might allow me to sleep off the headache, but don’t get rid of the pain. The last time I had to go to the ER I got Demerol; made me loopy – long ass needle.

    Your roomate was in college so insurance was probably an issue. Imitrex works like a charm, but cost well over $50 per shot! When you’re taking 60 or so shots per month, the insurance companies get to be a pain to deal with. If you have enough Imitrex, you can live through it. Without it – it’s not fun.

    I end up on cocktail of medications to keep them from happening – Verapamil, Indomiacin, and Prednisone (for short periods) work sometimes. Prednisone works all the time, but the side effects preclude long-term use.

  5. Yikes, Spencer! This sucks. But at least you seem to have some sort of handle on treating it. (If that’s any consolation for the suffering…)

    Our oldest daughter gets what’s been diagnosed as migraines – she’s been having them about once a month since about age six. In addition to the severe headache, she get naseous (anyone notice a child barfing on the lawn of the Mann a couple weeks ago in the middle of the “Peter & the Wolf” orchestra concert? That was us)…eventually falls asleep and then in a couple of hours she wakes up like everything’s completely okay.

    Seems to happen with more frequency when we have something planned (like the Mann) and we’ve wondered if stress (even “happy” stress) is a trigger.

    Do you have a pattern — when workload is particularly heavy — or even the stress/excitement of wedding preparations?

    Me, I just get “ocular” migraines…which means I have weird visual disturbances…like a shimmering jagged prism distorting portions of my field of vision. The first time, I thought I was having a stroke and went to the emergency room. Now I just try to enjoy the pretty colors…and it usually goes away after 15 minutes or so.

    Anyway (longest comment ever, btw, sorry) hopefully your having this attack now will mean you’ll be in the clear for your wedding. You will find a way to make things work regardless, don’t worry. I was pretty sure I was going to pass out during my wedding, since I fainted during several times when getting fitted for my dress – feared some sort of a “Pavlov’s gown” syndrome would make me keel over on the altar. But, no such drama on the big day — in fact, it never even crossed my mind when in the moment.

  6. My husband has had these since fall of 2003. He has gone up to two years between cycles, but had an intermission of only six months once. He is currently using oxygen therapy, ice and meditation. This cycle has lasted since 3 July and he is now in the sleep deprivation (sleep phobic) /three headache a day period i have come to call the climax of his cycles. I guess the up side is there’s a down side and it will come sooner than later, if it fits the pattern this time.
    so sorry if you or loved one has these,
    Please be careful with prescriptions and injections. A person’s heart can only take so much of that stuff.

  7. Spencer, I know what you go through. I have had CH for 10 years now. Most recently, I went to a Headache Specialist in CT who advised cyclical changes in light and the seasons are the root cause. A course of Melatonin at 12 mg/ day at bedtime, Prednisone (12 Day Course 60-10 mg taper) and Verapamil (start with 40 mg/ twice daily then up to 80 if no response) is my initial treatment. For relief during a battle- O2 is the way to go!! I was taking Imitrex so often to relieve the pain, it MADE THE CLUSTERS WORSE and extended the episodes!!!! I use a non-rebreather mask- O2ptimask- with 15LPM of O2) and it can kill an attack in 10- 15 mins. There is no limit to its use/ day and a D tank (3454 Liters) can last me a week. Insurance covers it too!
    Good luck dude!

    Eric Grove

    • Oxygen is a wonder. First time I used oxygen, I didn't have a non-rebreather and it the oxygen did nothing. The non-rebreather made all the difference. I have a O2 machine that maxes out at 8LPM – and it works in about the same time to get rid of the headache.

      Good luck with yours. Mine are in remission – I hope forever.

  8. My husband suffers from Cluster Headaches. He had a round several years ago that lasted about 6 months or more, He then went to a Headaches Specialist, was given Meds and a couple of shots, they magically disappeared They have started again, I am at a loss, I think he should see another MD at this point I am Desperate!!!!

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