Sleep deprivation and auras

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I forgot to sleep. As in I had a wicked as all hell midnight migraine and, yeah, that wasn’t exactly productive for sleepy, sleepy time. So I didn’t sleep. I finally got up and took a triptan. Which is not working. At this point, I can say did not work at all.

There are times when I do not sleep I get auras that are particular in nature. One is when I move my arm I will see several arms in translucent blue after that arm. I know there is a word for this, but, since I am sleep deprived I cannot remember what it is. The second, which was today, is far worse. The whole world duplicates. That is when I move my eyes, the world I had seen echoes over the world I now see. I think it is called ghosting, for this ghost image that is overlayed over reality. But it is literally every movement of your eyes. So… echo, echo, echo, echo. You can imagine, this is very disorientating. This one just happens from time to time but happens more often when I am sleep deprived. It is common in people with Visual Snow, which I have, so no idea if this is an ‘aura’ due to the wicked migraine or I aggravated the VS due to lack of sleep. The other one I mentioned, also can happen with VS. VS can occur with a lot of distortions all its own, besides the constant visual static. I often assume a lot of things are just that due to the fact it is a constant visual phenomenon that is neurological. While migraine auras, I assume are more specific visual types; or auditory, olfactory and tactile of course.

Here is some info on Visual snow by the way. I mention it because if you have a lot of visual distortions and migraines, they are highly comorbid conditions. 50% of people with VS have migraines. And “Persisting visual snow can feature as a leading addition to a migraine complication called persistent aura without infarction,[5] commonly referred to as persistent migraine aura (PMA). It is important to keep in mind that there exist many clinical sub-forms of migraine where headache may be absent and where the migraine aura may not take the typical form of the zigzagged fortification spectrum, but manifests with a large variety of focal neurological symptoms.” In my case, I had VS when I was younger and developed PMA in my mid 20’s. Relatively soon after the migraines themselves developed actually. The VS also got worse. But not nearly as bad as some people. However, I find I am able to just tolerate it well. I mean with PMA I get so much visual intrustions as is, I sort of am ambivalent to it all. Obviously, sometimes they are intrusive and problematic, but at the same time, you just have to ride them out. Other times, you can just ignore it as best you can. Anyway, with VS, lack of sleep has always seemed to make it worse for me. Even the static becomes thick and almost tangible.

The aura I had before bed, was not VS but an actual migraine aura of the tactile variety. It was this annoying tingling sensation on the top of my head. That would spread every so often. And also with a strange pulling sensation, like my head was morphing. Lasted quite some time. I tried to ignore it because I didn’t Plan on taking a triptan today. Such is life. Triptan at the beginning of the week. What a waste. I also had a visual aura of an arch of warping pixels of light; scintillations. But, that is my persistent migraine aura… it is there for the majority of the time and no real indication of a migraine. A tactile aura, on the other hand, is.

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I belong to a migraine support group called Migraineurs’ Hideout which has been a great place for me to get support since it started. This year we had a Secret Santa. And my Secret Santa, who runs the group, got me a few things actually. However, one pertinent to this blog and my Page. Because look at this hoodie! It has my Migraineur Mutterings & Musings logo on it! She also got me a steel mug with the logo from my other Page engraved on it.

You literally cannot image my pleasure when I opened this present to find these personalized gifts. I thought it was the most thoughtful and creative idea ever. I rather wish I was such an awesome gift picker myself. Sadly, I really am not. This was perfection.

Actually I will show you the steal cup as well.

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And that is the logo for Making Invisible Disabilities Visible. That she etched herself. I thought pretty damn cool.

 

I have to say since it was a bad vertigo day, just getting a present in the mail made my day. And such a well thought out one meant a lot to me.

And then the weather turned

 

I had a migraine.Then my headexploded.True story.

 

It is cold here in Canada. Then warm. Then cold. Then my head exploded. True story.

I love mild temperatures, don’t get me wrong. But not from -25C to -4C in one day. Yeah, that migraine was effing brutal. And when I took a triptan it failed. Weather triggers are fast, killer and not always that great for triptan responses. Maybe because the lack of warning. You have a 15 minute window for the perfect triptan response. With some weather ones they slam into like a truck and yeah take the triptan. Others hit you over night and you wake up in agony… well past the window.

This is why I hate spring. It is actually used to be my favorite season due to it Not being winter. But the weather fluctuations make me loathe it. Likewise the beginning of winter is a fluctuation time and unpleasant… and Also winter so even more unpleasant. Walking from a warm, cozy house to the freezing outdoors is like being stabbed in the head repeatedly if you have a migraine. Then there is the glare off the snow. And often a nasty wind. None of which is migraine friendly.

What I am really saying is that I am ready for summer. Which is a very, very long ways away.

Dance in our chains

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We all have different chains. And we all have them. The chains we have are chronic pain, stigma, doubt, and our own reactions to the pain as well as depression. Like my self-worth has really taken a shot from having chronic pain for decades. And I carry that weight with me. What Nietszche is talking bought is societal chains. But our chains, the pain, the stigma, the reaction to the pain, comorbid mood disorders… are a heavy and tight chains to have been loaded down with.

And it is true we have to learn to dance in our chains. Know that these are the chains that we have. We will not be rid of them. It is our burden to carry. We accept that. And we, occasionally, have acceptance and we, occasionally, live our lives anyway. We find a way to dance with those chains. A way to live our lives with that burden of pain weighing us down and restricting us.

Depression… well that is knowing the chains are there and knowing how heavy they are and knowing we will never be rid of them. And fixating on that. Feeding the pain and stuck in an infinite loop that feeds on itself. Everything that could add pain and suffering just gets added to the infinite loop and we can never escape it. Depression never lets us see beyond the infinite loop of its own suffering. Clarity only comes when we are outside of it and then we remember what we were thinking and how easily we can get sucked back it.

How do we do it though? Dance in our chains? They are some damn heavy chains. Reminds me of the ghost in Scrooge. Woe is me, dragging my chains around. It must have to do with the fact that we know there are moments of lesser pain we can take advantage of. Steal moments. And in those moments who knows what sort of dance we could get?

Easier said than done. With chronic pain I can say we should take advantage of lower pain levels to go out and do things, in moderation and pacing ourselves. But I am talking about Fibromyalgia pain and other forms of pain. Migraine pain doesn’t play by those rules. It doesn’t care if you pace or moderate. It stills slams into you. You can’t so much of anything when it does. Functionally you are not all there. And you are fatigued. And dopey. And dizzy. And nauseated. And the pain makes conversation hard. The environment of sound and lights makes it rather painful to be anywhere. You cannot dance in those chains. Maybe sit there with a sort of blank expression and try a half-assed conversation. At the same time being more aware of the pain than literally anything else. It isn’t the same kind of pain. It is more Present. I have them every day and I am not sure how one gets around that. Moves around that, or with that. FM, yes. Migraines… not so much. I force myself to do small things, but I am just not all there and I cannot function well at all.

It does make sense if you Don’t get them every day though. Live in those days. But for those of us who Do get them everyday. I am just not quite sure what we ought to do. I have been told to accept the pain and live my life. I do accept it. But I have to say if it was just the FM this would be substantially easier. And maybe people don’t get that. But migraines inhibit so much.

So it seems to be a very careful life. Of careful movements. Of carefully going outside with a ride, so you don’t drive like that, with sunglasses and a hat to protect yourself from the sun… knowing the pain will get worse because it always gets worse when you leave the controlled environment of the house. Carefully getting what must be done done and when the pain is worse coming home to relax. Not working because it becomes impossible to function. Barely able to manage chores, but carefully doing 5 or 10 minutes a day. Gently, carefully. Everything makes the pain worse, so after, rest. Rest, and know it will go down again soon… just have to get through the high pain. Gently, carefully exist. Not too much. Not too fast. Rest when the pain gets too high. No dancing. Just careful, gentle living. Or the pain will be very severe as punishment for doing anything at all More.

Warning: You are losing money by using migraine

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I hate to say it but if you are using migraine you will lose money.

I use migraine a great deal. I admit it I do. I use them every day. And I have to say they have done nothing for my career at all or my ambition. Not using them seems like the best option, but they don’t come with that feature. One you have them they run on their own schedule and do not permit un-installment.

The use of migraine causes:

  1. missed days
  2. limitations at work
  3. stopping work altogether
  4. reducing hours worked.
  5. changing jobs
  6. loss of productivity.

So this:

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But it isn’t just work that is affected by our frequent migraine use. It is all the other things one must do if they have the migraine habit established in their brain system. The supplements. The alternative treatments. The vitamins. The essential oils. The whatnots. And the what-have-yous. These cost money. They we often do not have because our work was affected. Costs not covered by insurance for things like Botox. If you Like needles in your head, then migraines are for you.

Migraines are a loss loss sort of deal. If you are thinking about using them I recommend a mild tension headache instead. Once your brain uses a migraine, it tends to get fixated on the idea. Then it is migraine this, migraine that… it just wants migraines all the time.

If you want to be rich, tell your brain No to migraines.

*Read with heavy sarcasm*

5 Things About migraine Your Boss Wants to Know

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They can’t in general ask these questions but if they could straight up ask you about your health they would want to know.

  1. Can they accommodate you in any way? A good employer will want to know if they can change their work environment in any way to accommodate you. A bad one will not ask or shut down every suggestion you have. Been there. You can for example ask for full spectrum Fluorescent lights. An office that says no to perfumes and such. Request an office without a window. As for a privacy cover for your screen to make it darker.
  2. Are you being treated effectively? You don’t have to discuss medical anything with an employer. But they may be curious because they want to know if you are having migraines or effectively managing migraines. I have been asked this on return from leaves, so they felt it was their right to ask me.
  3. Are you able to perform your job? This is what they really want to know. No matter your health, they want to know Are you going to Perform your Job. They will assess this as you work of course.
  4. Are you reliable? Another really important thing for an employer is reliability. Are you going to come to work and be present to do your job. This is another thing they will assess as you work.
  5. Do migraines at work interfere with your job in any way and is there a way around that? Sometimes a good employer will ask if your migraines are interfering with your work and if there is something that can be done to help with that. A change in how you work. A change in process.

One thing I have noted while working is that one company treated me quite poorly due to lack of the capacity to communicate properly with someone with a disability. It caused undue stress and emotional strain on me. It really is something people should be properly educated on. However, I was not reliable and I did have problems later with my performance and migraines were severely interfering with my job. Despite the fact there literally was never any accommodation offered, it is hard to say how to manage an employee who is literally too sick to function. You need reliable and dependable people on your team, and that person simply is not me.. I was quite sick and in pain there or not. My last employer offered the opportunity of going down to a less stressful part-time position. I thought this was appropriate and should have worked, yet, unfortunately it was still too much for me to handle and that is no fault on them. It was a compromise that seemed quite appropriate to me.

Therefore, there comes a time when we have to acknowledge we cannot do the work at all. Either go on disability. Or find work we are capable of doing. I personally am looking for work I can do from home quite ardently. We want to work. We push ourselves to. But we cannot always manage it in certain situations and environments. We need to find places that work for us. And work for our employer. When we do, then we can be all that more content with blending health and work together.

I am depressed

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I actually knew I was depressed. It isn’t a surprise or anything. However I have been looking through my files for ‘evidence’ to give my insurance company for my migraines and came across my psychologists letters to my doctor.

Initially when she diagnosed me she diagnosed me with mood disorder associated with a medical condition; as in depression associated with my chronic pain. And primary insomnia. I remember this because, yeah, it made sense to me. In pain, also depressed. However, she got to know me and changed that to Major Depressive Disorder. I don’t remember that, but, that being said I was depressed at the time and my memory of such things is hazy at best. I had been returning to work after my first suicide attempt and was seeing her because I was worried work would pretty much cause a second attempt. And I was right, but it would take some time.

Different people are affected in different ways by major depression. Some people have trouble sleeping, they lose weight, and they generally feel agitated and irritable. Others may sleep and eat too much and continuously feel worthless and guilty. Still others can function reasonably well at work and put on a “happy face” in front of others, while deep down they feel quite depressed and disinterested in life. There is no one way that people look and behave when they have major depression. However, most people will either have depressed mood or a general loss of interest in activities they once enjoyed, or a combination of both. In addition they will have other physical and mental symptoms that may include fatigue, difficulty with concentration and memory, feelings of hopelessness and helplessness, headaches, body aches, and thoughts of suicide.All about depression.com

I guess I can see why she changed it. My depression did become its own beast. Initially years ago I do believe it became a problem simply because of the pain. The pain was getting the best of me and I was pushing through the pain to work… and it was really becoming a massive problem so I was depressed about it. But tack on a few years of That and it ingrains itself pretty good. Get some strong habitual depressive thoughts. Some steady suicidal ideation and a couple of attempts in there. A lot of self-worth issues and guilt. But I masked my depression very well, up to the suicide attempt obviously and other than no succeeding I regret that I can no longer mask it. I prefer to pretend it is all well and just deal with it myself. But clearly that is risky when you are suicidal.

After the second attempt my current psychologist sent me to a psychiatrist for medication. Clearly he agreed it is Major Depressive Disorder and at the time needed to be medicated as well. And it really, really did. I would get in a lot of pain and all I would think about is wanting to die. How much better off everyone would be. How much better off I would be not suffering. How I wouldn’t be a burden anymore. And I was useless anyway, no one would miss that. Take me away and there is no one thinking she was necessary for this or that. I was fundamentally useless with pain. Those thoughts and more on repeat. The med, Abilify, stops that. I do get suicidal, from pain alone. But I do not get the plummeting mood that drives me to want to die,  just die that very moment. It evens it out. So I am depressed but it is milder and easier to tolerate. The pain isn’t so I still get the issues with that.

Here is the criteria I found on All about depression.com

Diagnosis of Major Depressive Disorder, Single Episode

From Diagnostic and Statistical Manual of Mental Disorders- Fourth Edition

A. The person experiences a single major depressive episode:

  1. For a major depressive episode a person must have experienced at least five of the nine symptoms below for the same two weeks or more, for most of the time almost every day, and this is a change from his/her prior level of functioning. One of the symptoms must be either (a) depressed mood, or (b) loss of interest.
    1. Depressed mood. For children and adolescents, this may be irritable mood.
    2. A significantly reduced level of interest or pleasure in most or all activities.
    3. A considerable loss or gain of weight (e.g., 5% or more change of weight in a month when not dieting). This may also be an increase or decrease in appetite. For children, they may not gain an expected amount of weight.
    4. Difficulty falling or staying asleep (insomnia), or sleeping more than usual (hypersomnia).
    5. Behavior that is agitated or slowed down. Others should be able to observe this.
    6. Feeling fatigued, or diminished energy.
    7. Thoughts of worthlessness or extreme guilt (not about being ill).
    8. Ability to think, concentrate, or make decisions is reduced.
    9. Frequent thoughts of death or suicide (with or without a specific plan), or attempt of suicide.
  2. The persons’ symptoms do not indicate a mixed episode.
  3. The person’s symptoms are a cause of great distress or difficulty in functioning at home, work, or other important areas.
  4. The person’s symptoms are not caused by substance use (e.g., alcohol, drugs, medication), or a medical disorder.
  5. The person’s symptoms are not due to normal grief or bereavement over the death of a loved one, they continue for more than two months, or they include great difficulty in functioning, frequent thoughts of worthlessness, thoughts of suicide, symptoms that are psychotic, or behavior that is slowed down (psychomotor retardation).

B. Another disorder does not better explain the major depressive episode.

C. The person has never had a manic, mixed, or a hypomanic Episode (unless an episode was due to a medical disorder or use of a substance).

It is a pretty serious co-morbid for migraines and chronic pain. We have to have it treated well and see a psychologist to manage it.