Long time…

28Apr06

It's been quite a while since my last entry, and I thought I had better post something so those of you following along here know I'm still around!

I wish I could give you an update on how things are progressing with the pain specialist, but I've had to postpone my next appointment. A particularly nasty migraine hit me the last day I was supposed to go in, and now he's away for a bit so it will be at least a couple more weeks until I see him.

I thought I'd maybe explain a bit more about my migraines. I have what's called chronic daily headache (cdh). I actually really dislike this term because it sounds so much less intense than it actually is, but anyways. The kind of cdh I have is transformed migraine (also called chronic migraine depending on what source you find). This is unrelenting and is present 24 hours a day 7 days a week at varying intensities. Sometimes it's really bad, and sometimes it's just at a low hum, but it's always present. I also get acute episodic migraines on top of that, so the best way I can think of to describe this is that I will get a severe migraine on top of a background headache. I usually get migraine without aura although I do occasionally experience aura.

I'm never really without pain, and as you can imagine some days can be quite difficult, but the opioid treatment helps bring my pain level down to a pretty manageable level a lot of the time. As for how long things have been this way, well, that's a bit complicated. I started having a chronic headache of some sort around age 13, but what kind of headache isn't all that clear. I was told at the time that it was just a tension headache but in retrospect I wonder if it was actually migraine. It was a much lower intensity back then but gradually worsened as the years went on. It's been at this, its worst intensity (and diagnosed as transformed migraine) for somewhere between the last 5 to 6 years. I will get into what the opioid treatment consists of for me exactly and how it affects me soon.

More information about chronic daily headache and transformed migraine

Chronic Daily Headache

All about Chronic Daily Headache

*I'm curious if it's possible to have a diagnosis of chronic daily headache and have the type of headache simply be migraine. In other words, the person would be getting 15 or more migraines per month with resolution (and is pain-free) between attacks. If you have that or know anything about it (or what it's called) let me know!

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6 Responses to “Long time…”

  1. Hi Katy, I’m so happy to see a post from you! I’ve been checking back almost every day (you have a fan club). : )

    I know it’s a challenging time for you right now, balancing the headaches, the meds, the crazy sleep cycle, the bpd, and so on. I do hope you are getting some “good” days, although I know that is all relative, but at least some days where you can get out of the house and do things and feel “sort of” normal. I often feel like my whole life revolves around headaches…it is always on my mind (literally) and absorbs all my energy. I am forgetting to “live” my life. So I hope the opioid therapy, etc. can give you back some vague semblance of a normal life!

    Thanks for the descriptions of your headache. I’ve heard the terms chronic migraine and transformed migraine, but weren’t really sure how they manifested themselves (what level of pain, how often, etc). Sounds like you have been dealing with this a long time. I am lucky I reached age 27 before mine started, but I’m hoping I don’t spend the next 20 years with a headache. It is depressing to think about, so I don’t. One day at a time, like in AA i guess. Maybe we need an HA, Headaches Anonymous, to give us some mantras to help us cope!

    Hang in there girl! There are people out here who care a lot about you! I think of you every day and wonder how you are doing, so do stay in touch. Good luck with the pain specialist when you see him next. Let us know how it goes with the tweaking of the meds, etc.

    Have a : ) weekend. Terri

  2. 2 katy

    HI Terri 🙂

    “I often feel like my whole life revolves around headaches…it is always on my mind (literally) and absorbs all my energy. I am forgetting to “live” my life. So I hope the opioid therapy, etc. can give you back some vague semblance of a normal life!”

    I know what you mean. I think that’s part of the reason I took a bit of a break from posting too–just to keep it off my mind a bit more. It’s funny, the Drs want us to keep headache diaries and stop several times a day to record our pain levels and whatnot, but at the same time they tell us not to dwell on the pain. Yeah, no problem lol.

    I actually revised the post a bit because I mistakenly included info about chronic migraine. I don’t really fit the diagnosis of chronic migraine–that’s when you have clear cut episodic migraines and have pain free periods in between them, but you have 15 or more of them per month. Even I find all the different categories confusing! I added a couple more links about chronic daily headache though so hopefully it’s clearer. You have chronic daily headache for example, and the type is tension-type. I may add more links later on too.

    Hope that you too have a good weekend! I”m going to be spending part of it at least cleaning out the inside of my keyboard! I spilled a small amount of pepsi on my keyboard last night and several keys are sticking like crazy. It’s driving me NUTS. Well, off to a Drs appt–talk to you later 🙂

  3. Chronic migranes… That’s like another term for a day in the life of a businessman, right?

  4. 4 katy

    If you mean in the same way that multiple sclerosis or diabetes is another term for a day in the life of a businessman, then sure.

  5. 5 Noel Frayne RMT

    Katy,

    Stumbled upon “Better Days” while looking for the latest in migraine news.

    I have been developing and refining a new approach to migraines and headaches for 19 years here in Victoria. I have identified a structural origin which, when corrected, has ended the headaches for a high percentage of my patients at the Victoria Headache Clinic.

    I recommend you take a look at http://www.victoriaheadacheclinic.com for more information.

    My average migraine patient comes to me twice a week for three to four weeks to completion. Completion here means they have either stopped getting migraines, or they have reduced to the stage where the patient will be able to reduce them even further without treatment.

    Success rate is in the 90% range.

    I wish you all the best with your headaches.

    Sincerely,

    Noel Frayne, RMT

  6. 6 Rhee

    Somehow i missed the point. Probably lost in translation 🙂 Anyway … nice blog to visit.

    cheers, Rhee.


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