June is migraine awareness month. Migraine attacks are often seen as ‘a bad headache’ until you have one and then it is ‘Holy hell balls, I think I am dying’. It is all around sensory overload, nausea, vertigo, horrible pain, and so much more symptoms in the mix.
I have had people with episodic migraine attacks tell me I must be ‘doing something wrong’ or ‘not doing something right’ to have caused them to be chronic because ‘that is not normal’. And this is because when you are episodic you have well managed migraine attacks so you have never taken a deep dive into migraine disease research to know what chronic migraine is, or how many people actually have it. But not cool to blame me for my disease. Not cool at all. I don’t think most people would do this but the one’s that have… rude, man.
I was diagnosed with migraine disease when I was 20. Specifically Migraine With Aura. I then progressed into Chronic Migraine with Aura. And then some complications by having Vestibular Migraine as well. Anyway, in my 30’s ish they became daily. Chronic migraine means more than 15 attacks a month and this, trust me, drastically affects your quality of life in many ways. When I went daily it was a massive problem in all aspects of life.
So, yes, chronic migraine does in fact suck
There are days nothing will tame the severity of the pain and you are laid out by it. Or stop the nausea. Or make you able to function through the vertigo. Or tolerate even one damn sliver of light for one damn second. And every day is a new migraine attack. Intensity varies and symptoms vary. You just never know what you will get and if you will even be able to function. Or if you can function part of the day but not the rest. It varies.
Normally, one would Not choose to function with a migraine attack. Period. But since we have them chronically we sort of have to function when we can and so we parse our pain in the same way anyone with chronic pain does such that we have ‘tolerable migraine attacks’ maybe a 7 or low 8 and ‘intolerable migraine attacks’ which would be a high 8 and above for me. But also ‘half-assed treated migraine attacks’ which can be like a 5-6 although if a triptan only worked partially the migraine attack Will return full force. So we learn to function with a level of pain most would not want to function with at ALL. In order to just do necessary things in life. But only when the pain is not severe or the symptoms are not severe. It is part of coping with that which cannot be changed so must be endured.
I do not believe most people ever got that. That I could be working and somewhat functioning (more errors, yeah, and less focus, and all sorts of typos and strangeness and aphasia) but still have an actual migraine attack. It seemed incomprehensible to them, especially if they ever experienced a migraine. But they do not understand what chronic migraine is like. We cannot be in bed in the dark every second of our lives. Even if we wish we could.
Working with chronic migraine attacks
As one might expect working with constant daily migraine attacks will get to you. The pain will just get to you. You are surrounded by triggers. You are surrounded by an environment that is designed to aggravate your pain and sensitive senses. It amplifies the migraine attack such that it just gets worse and worse. This is not fun. (I once puked in my office garbage can because I couldn’t make it to the bathroom. I couldn’t eat at work because of the diarrhea migraine symptoms funness if I did. I had to triple check my work and still made strange bizarre errors. I would forget new policies and remember policies from a decade ago instead. I would have communication problems and comprehension problems…. the list goes on and on and on) The fact we are butts in chairs means nothing… that is called presenteeism. We are There but our functionality and productivity is reduced, sometimes severely.
It is madness. It is true madness working like that. I got severely depressed. I didn’t and don’t respond to treatment preventatives so I am stuck with the attacks I have… and pushing through the pain pushes back. And so, yeah, major depression. And suicidal thoughts. And then suicide attempts. it is like work burnout and then… keep going and doing it until you are Beyond Burnout. And there lies a horrific existence. I do not understand how people cannot comprehend how horrific that was. The torment of it. How normal it is to have suicidal ideation in that situation. Not normal to have suicide attempts and that was a trauma that took years to recover from, but I understand why it happened… I had no hope… all I had was immense pain and trying to function under it when I could Not Do It. But I forced myself to and that just made it insanely worse. The work environment got worse the worse my functionality got. And it was a living nightmare.
However, getting disability for chronic migraine is a challenge. I find this to be another horror. Because they almost killed me. And I ardently wanted to die. From trying to work with them. And I wouldn’t want anyone to ever feel like that ever. Actually I struggled to get long-term for chronic migraine, fibromyalgia, and Major Depressive Disorder. So I have no idea where the line is for people to consider someone disabled. I do know the line one crosses from trying to survive to not wanting to survive at all. I know that one. I cannot fathom a society that think it is easy or works or one should work with daily migraine attacks. How does that seem like it would functionally be possible? It really isn’t.
To say chronic migraine disease is not serious is to minimize that hell I went through. And almost didn’t make it out alive. And that some do not make it, of which we all are very aware of in the migraine community. That is something that leaves a mark on us all.
There is an element of unpredictability in all chronic illness. One never knows when it will abruptly get worse for no reason. And with chronic pain, it is just so variable. One day is lost to pain. Another is modestly functioning if you pace yourself. But it is draining. And challenging. And you can’t concentrate well.
You are not dependable. You are not reliable. Well, you may be but you disease ensures you cannot be. And plans are all maybes. Sort of sketched in. And when you do socialize which is good for our mood maintenance (if you also have depression for example) it may be for a short duration and rare.
The impact of chronic migraine is severe and just spreads throughout your entire life. No matter how hard you try to hold onto things, you can’t. The more you push to function with them the less you are able to function in any other aspect of our life… and life shrinks and shrinks to a pinpoint existence of pain and work and pain and work. Until you can no longer work at all. And become disabled. Or find some sort of work compromise that works for you.
That doesn’t mean you cannot have a life. It is just a mellow life. It is calm. It is controlling your environment and reducing triggers. And resting when needed. And, yeah, some days the pain wins. When you have a migraine every day… I try not to think about how many days that actually is. I just take advantage of the lower pain days and times of the day to do what I can, at a slower pace. Obviously I do a whole lot of things to try to reduce the migraine pain or deal with it, cope with it, reduce the emotional toll of it, reduce the suffering it causes.
I have had this type of migraine since 2010 and it was episodic, sporadic, random and varied in intensity from mild weirdness to extremely severe. I dealt with it best I could. And actually the one preventative I actually responded to was Sebelium for these very specific migraine attacks.
However, in 2017 the dizziness and disequilibrium and vertigo started slowly, progressed, and never, ever went away. While I was on Sebelium. I do not believe it is vestibular migraine but I cannot rule it out. However, it is continuous. Migraine attack or not. It Never Stops. It is Relentless and the only medication that even touches it is Klonopin. Reduces it so I can actually get off the couch because without that medication I am utterly non-functional. With it, slightly better… worse as the day goes on. But severely fatigued and the dizziness is constant. I lose a lot of days to this. Days I cannot do anything at all. And the fatigue alone prevents me from doing anything for any time other than short spurts. And then rest. Or I get sicker and sicker and sicker. So maybe it is vestibular migraine just so much more severe. I cannot say. I do know it has not stopped or gotten better since it began. And if Anything is as bad as the pain vertigo is that thing.
This is what it is
I don’t want to say ‘poor me, welcome to my pity party’. I want people to comprehend that chronic migraine disease is a horror to behold. It is not easy to live with and the impact is widespread through your entire existence. I do not want to minimize its impact. I do that often with pain because I am stoic. Minimize. And undermine my own pain and suffering. But, man, the impact is pretty obvious. It hit everything and everyone. And I work so damn hard every day just to manage That migraine then the next day That migraine and so on and so on.
Chronic migraine disease broke me. It shattered me. All because I was trying to hold onto a full-time career and failing hard. And pushing through the pain and getting worse and worse and worse. I think we are capable of working with it. If we have flexibility, less hours, work from home and can work when we can and not on any sort of fixed schedule at all. Not full-time though. Not even part-time in most of us. Casual, yes, I think with a whole lot of flexibility and the rest environment, like home, we may be able to.
However, one has to remember I do not have managed migraine disease. At all. No preventative has worked. I am told I simply do not respond to medications. I have comorbid depression and fibromyalgia that make it much more complicated to treat and manage. And now the constant vestibular symptoms that have destroyed my functionality. So when I say it isn’t possible I mean it isn’t possible for Me. If I ever improve with frequency and the vertigo goes away I would like some sort of very flexible at home sort of work. It would make me happy. But I understand my limitations. I accept what is and isn’t possible for me at this time. Now. After going through the brutal experience of trying so damn hard trying to work full-time when I wasn’t capable of it.
Life is a bitch. It isn’t fair. We all have our burdens to bear. And this is one of mine. Living with chronic migraine I find is better when one can stay home, control one’s environment, be flexible with when one can function, rest when one is not functional, manage one’s mood and do self-care as needed and all the things to manage our suffering. It is difficult, yes, but it isn’t the raw, desperation of working with that pain heightened by the stress and environment to the point that it is unbearable to exist.
I can say that about all my chronic pain- when I can be home, do all the things I need to do for self-care, mood management, pain management, stress management I can endure and persevere. When I can’t… I tank. We can only take so much pain. Only function at some level for so long. It is very much not something you can push, or work on a schedule, or be dependable or reliable.
Migraine disease is a fickle beast. You are wired to be hyper sensitive to triggers and to everything really. It makes the world too much Muchness. You just wish you could dim the world and turn down the volume. It is a very unique and distinct pain that limits my capacity to get around in the world more so than fibromyalgia (which is not a walk in the park)… it is just the intensity, the location, the symptoms, the insanity of it… you can rub anything on your brain to stop the pain. Anyway, they broke me and made me, and broke me, and made me.