Chronic migraine awareness day #MHAM

2 (2)

June 29th is chronic migraine awareness day. I have had chronic migraines for about 16 years now. It is difficult to remember precisely. They have been daily for about 12 of those years. Once they became daily they just stuck that way despite all sorts of preventative treatments.

Chronic migraines are defined as more than 15 a month. More often than not.

Then there is some serious impact. Well there is when you are high episodic as well. Low episodic is actually a pretty manageable state, especially if you respond well to triptans. When I first started getting migraines they were around 6 a month, but they were manageable.  They usually responded well to triptans. Or to sleeping them off. They usually didn’t interfere with my studies, social life or work. But chronic migraines impact everything.

Once you get to a certain frequency is when they add in preventatives to treat migraines. I had them added in too late, as they should have been on the menu from the get-go. Point is they are to decrease frequency or intensity. Also apparently to gain weight. And then have the neuro tell you to lose weight because that might help with the migraines. That is irony. Side effect lists are generally about two pages long. I think they should just put what Isn’t a side effect on them. They are all off-label. Classes like antidepressants, anti-seizure meds, and beta-blockers. I have been on quite a few, then repeated, then combo platters. There is a study for chronic migraines specifically that references Topamax and Botox for chronic migraine treatment. So, that is what every neuro will in fact mention, even if you have done both to no effect.

Abortives/triptans can only be taken 3 times a week which is problematic for the chronic migraineur. Because we can have quite a few more migraines than we can treat with triptans. Assuming we can take triptans. Assuming the triptan even works every time we take it.

Then there is Botox. I never had a result from it myself. I am going to be trying again though because I really enjoy having limited capacity to make expressions and having a numb forehead all the time. The stats I have read varied as time has gone on, however since it is quite recommended for chronic migraine here is a specific study to reflect upon:

Two Phase 3 Research Evaluating Migraine Prophylaxis Therapy (PREEMPT) trials recruited 1384 patients with chronic migraine, and randomised them to treatment with Botox® or placebo. These patients were suffering on average 20 days of headache each month, of which 18 were moderate or severe. Those randomised to Botox® received fixed-site, fixed dose injections every 12 weeks over 56 weeks. These injections covered seven specific areas of the head and neck, with a total dose of between 155-195 units. At six months, after two cycles of treatment, those treated with Botox® had on average eight less days of headache each month. After 12 months, 70% of those treated had ≤50% the number of headaches that they had done originally. Botox® was well-tolerated, the commonest side effects being neck pain (6.7%), muscular weakness (5.5%), and drooping of the eyelid (3.3%). No serious irreversible side effects have ever been reported in trials of Botox® in headache.Migraine Trust

No one gets migraine frequently.

Chronic migraines bring with it a host of specific problems. It is an invisible disability because we learn to mask our pain. It is chronic pain and as such because we have to live a life we have to have some capacity to function through certain levels of migraine pain. Something I would never have fathomed with episodic migraines. Functioning through that pain and sensory hell? In what world is that acceptable? Well in the world of chronic pain apparently. It is a disability for sure but not one all of us are on disability For. I downgraded my work for example, but I still work. I was though incapable of working full time, even though I tried very hard to do so. So there is definitely a component of financial instability that comes with the condition.

Another migraine.Should I try to hide the pain_It is too intense.I should hide myself.Always hiding myself.Losing time.Days.Years.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s