Chronic migraine awareness day

I have had chronic migraines for about 20 years or so. Ranging between 15 a month to straight up daily. It is a disease that will break you, destroy you, and make you all at the same time. Your life will be forever altered by it. Your goals, ambitions, and dreams will just not be possible. Survival becomes the name of the game. And small pleasures. And ways to cope.

Migraine disease when it is high episodic (close to chronic) and chronic is brutal. This is when it affects literally every aspect of your life.

Work

Work is a common struggle at this point. If we work we have issues with presenteeism (there but not able to function well or at all) and absenteeism (having to miss for severe symptoms). It is very hard to get long term disability for chronic migraines, even though it is Clearly disabling. And some of us cannot afford to be disabled, as it isn’t exactly a living income.

Suicidal ideation

I am not going to lie… it is relentless, it is brutal, it drags you down mentally as you cut parts of your life out to just survive. And eventually, it is just an existence not a life. All about survival and not living. And that is when the depression smacks into when you realize This is your Life. And that was me for a long time; two attempts a lot of suicidal ideation.

And it is then you are in the danger zone for suicidal ideation and intent. Unmanaged pain is dangerous.

Results: The rates of suicidal ideation and suicide attempts were the highest for chronic migraine with aura (ideation: 47.2%; attempts: 13.9%) and lowest in migraine-free controls (2.8%). Migraine frequency was an independent risk factor for suicidal ideation and attempts in patients with aura (both P_trend < 0.001), but not in patients without auras. Migraine aura and depression were associated with higher risks of suicidal ideation and suicide attempts in patients with migraine.

Conclusion: High migraine frequency has a correlation with high suicide risk in patients who experience an aura, but not in other patients with migraine.

Association of Suicide Risk With Headache Frequency Among Migraine Patients With and Without Aura

Treatment

Chronic migraines a notoriously difficult to treat. We often go through several preventatives before we find something that sort of slightly does something. And we cannot use our triptan abortive for every migraine. Oh, no, only 2 times a week. And if you get 7 migraines a week… that really doesn’t help much with functionality.

The main treatment for chronic migraine used to be botox and Topomax. I have been told I am ‘unresponsive to medication’… as in I failed at everything they put me on. But we have new hope in the CGRP blocking medications. Aimovig is now available in Canda and when I can afford it, I will give it a go.

Things you will hear a Lot

• You still get those?
• You can’t have a migraine All the time.
• It must be something you are doing causing it
• It must be something you are not doing causing it
• They can’t Do anything to help you?

Things people do not get

• We are very tired
• We have a hard time concentrating and focusing
• Light and sound are painful
• Sometimes we are extremely nauseated and/or have severe bouts of vomiting
• Sometimes our bowels join in the fun and we have to go to the bathroom 5oo times.
• It is very hard to fake a facade through the high level of pain and fake a smile
• We crash and burn after work with nothing left for anything else
• The fact we are at higher risk for depression and suicide should not be shocking in the least.
• We can have problems sleeping from the pain and lack of sleep is a migraine trigger
• We cannot use an abortive for every migraine, and when we can, it doesn’t always work or work all day
• We can feel trapped and hopeless
• We feel like we are failing at life
• Sometimes the pain is just too much to take
• We often face discrimination in the workplace
• Stigma is very common with chronic migraines

See more about chronic migraine:

Let’s talk chronic migraine

Chronic migraine awareness day #migrainematters

What I want people to understand about chronic migraine