Sunday, April 13, 2014

That photophobia and peristent migraine aura

I went and had my eyes checked out today and they are healthy and my prescription has changed little. I pretty much knew that but wanted to get some new specs and it has been four years since I've had them checked out. Never can be too careful when you have visual snow and persistent migraine auras because hard to say what 'normal' vision really is. So best to make sure it is all good. I also lost my pink tinted indoor specs, so needed to get them replaced. They help with my indoor photophobia a bit. And I wanted to get some prescription sunglasses. While my prescription is very mild and I don't really need to wear glasses except if I am driving at night or working on a computer it was suggested it may help with migraines. And you never know. So I figured maybe I should a nice pair of good coverage sunglasses with the prescription in them.

Sort have a thing for sunglasses if you have photophobia. All sorts of shades and tints.

I have pretty extreme photophobia. While I have a migraine, well, even a sliver of light can be painful to the extreme but the fact is light is just painful all the time. People with migraines can experience photophobia outside of a migraine attack so I am not unusual in this, but it is also common to have it with fibromyalgia and with visual snow. So I am really not usual in this. It just means I never leave the house without sunglasses and those rose tinted specs do make a difference. And my house is like a cave.

Now aside form the photophobia light is a trigger as well. Light is said to aggravate a migraine because of that damn photophobia for sure but many of us agree that it can also be a trigger. Some researchers believe we are already getting a migraine and it is not a trigger itself. I disagree with this because when I leave the house into that damn ever bright sun I will get a migraine quickly... very quickly. Yes, it will make an existing one worse, but it will also Give me one within about twenty minutes of exposure if I didn't have one at all.

Another reason I would say it is a trigger is because I can say beyond a reasonable doubt that sunlight and bright lights alone will trigger a migraine aura. As in a persistent migraine aura event and not a migraine itself, within seconds of being outside without sunglasses on. Sometimes I take my sunglasses off to see how bright the sparkles are in the sky (that would be blue field entopic phenomena that looks like dancing particles of white light. A normal phenomena many people can see somewhat sometimes, but people with visual snow see all the time very vibrantly for unknown reasons)... and when I do look at the sparkles and amazed at how bright they are within moments I will get a big blob of distortion in the middle of my vision that turns into a specular vortex. Happens if I am outside for moments without glasses. Happens when I wear my lighter sunglasses. It is just so bright it instantly triggers this aura, or this and a line warping effect, or blotches of light. Either way, definitely triggered by light alone. Faster without sunglasses but I notice with sunglasses it still happens but usually delayed by about twenty minutes of driving.

Photophobia is pretty hard to manage when it is constant. I will say that. But I have no control over the auras. However, it does seem like I lessen them by reducing the sunlight I get.

Saturday, April 12, 2014

Article: What #suffering does

What a wonderful article worth reading in its entirely...  but I had to post this portion here. I know with chronic pain we know a great deal about suffering. About pain that leads to physical and emotional suffering. This changes us on many levels. It changes us in different ways at different times. And we think a lot about that. We reflect on those changes. Often seeing the negative. Often seeing the limits. However, the changes themselves reflect this strong core within us often. And what comes out of all this can be some powerful insights into ourselves and the world. That is not to say we are better for it. No, not better. But definitely changed. Definitely different.

What suffering does

First, suffering drags you deeper into yourself. The theologian Paul Tillich wrote that people who endure suffering are taken beneath the routines of life and find they are not who they believed themselves to be. The agony involved in, say, composing a great piece of music or the grief of having lost a loved one smashes through what they thought was the bottom floor of their personality, revealing an area below, and then it smashes through that floor revealing another area.
Then, suffering gives people a more accurate sense of their own limitations, what they can control and cannot control. When people are thrust down into these deeper zones, they are forced to confront the fact they can’t determine what goes on there. Try as they might, they just can’t tell themselves to stop feeling pain, or to stop missing the one who has died or gone. And even when tranquillity begins to come back, or in those moments when grief eases, it is not clear where the relief comes from. The healing process, too, feels as though it’s part of some natural or divine process beyond individual control.
People in this circumstance often have the sense that they are swept up in some larger providence. Abraham Lincoln suffered through the pain of conducting a civil war, and he came out of that with the Second Inaugural. He emerged with this sense that there were deep currents of agony and redemption sweeping not just through him but through the nation as a whole, and that he was just an instrument for transcendent tasks.
It’s at this point that people in the midst of difficulty begin to feel a call. They are not masters of the situation, but neither are they helpless. They can’t determine the course of their pain, but they can participate in responding to it. They often feel an overwhelming moral responsibility to respond well to it. People who seek this proper rejoinder to ordeal sense that they are at a deeper level than the level of happiness and individual utility. They don’t say, “Well, I’m feeling a lot of pain over the loss of my child. I should try to balance my hedonic account by going to a lot of parties and whooping it up.”
The right response to this sort of pain is not pleasure. It’s holiness. I don’t even mean that in a purely religious sense. It means seeing life as a moral drama, placing the hard experiences in a moral context and trying to redeem something bad by turning it into something sacred. Parents who’ve lost a child start foundations. Lincoln sacrificed himself for the Union. Prisoners in the concentration camp with psychologist Viktor Frankl rededicated themselves to living up to the hopes and expectations of their loved ones, even though those loved ones might themselves already be dead.
Recovering from suffering is not like recovering from a disease. Many people don’t come out healed; they come out different. They crash through the logic of individual utility and behave paradoxically. Instead of recoiling from the sorts of loving commitments that almost always involve suffering, they throw themselves more deeply into them. Even while experiencing the worst and most lacerating consequences, some people double down on vulnerability. They hurl themselves deeper and gratefully into their art, loved ones and commitments.
The suffering involved in their tasks becomes a fearful gift and very different than that equal and other gift, happiness, conventionally defined.

Friday, April 11, 2014

“I laugh because I must not cry, that is all, that is all. ”

 “I laugh because I must not cry, that is all, that is all. ”
― Abraham Lincoln

Of all the famous quotes that one is rather unexpected. However, I often have said the one coping mechanism I developed to deal with chronic pain long ago was humor. It wasn't like I didn't have a sense of humor. It was just that I was a very sarcastic, cynical young person. I think maybe because I was aware of my limitations when I was young and I didn't like that fact. Nor did I like feeling tired and in pain all the time or how that affected me. It did affect how I viewed the world in general and how I looked at my options in life. How I looked at those options. I took things too seriously. I didn't let myself laugh at the simple things or act foolish for the fun of it. And I let the pain be a heavy burden on my shoulders.Which I thought about. I am a very introspective person. I think about a lot of things. Reflect on them deeply. Which is fine. But pain is one of those things that should never be reflected on for significant amounts of time. Not if you also have a melancholy type personality where thoughts begin to turn downhill, twist and turn against you with the pain. I knew I had to break that habitual thought pattern. I had read about it and it said for every negative thought you needed to replace it with three positive ones to retrain your brain. Because your brain is a broken record, it plays what it has been taught. But I wasn't one for fluffy positive reinforcement. I don't lie to myself very well. Fluffy positive thoughts are false in all their fluffiness. Pain is a fact. Can't lie about that. But you can dim the truth a little. Be a little less brutally honest with yourself. I found ways to trick myself about the reality I was in. Any brutally harsh negative thing I said I would then tell myself something more... realistic. The thing about depression isn't that it lies per sa, it is that it is always the darkest scenario of our existence, a shard of our reality that is harsh and brutal, unvarnished and cruel. But it isn't the whole truth or even realistic. And the reason we have a hard time thinking through it is because there are some very well thought out rational points in it that are very truthful. So it is a mistake to go that way. No, you have to look for the subtle other truths that are less harsh to add in there. Pain and depression are brutal because pain is brutal. Of course it is. Of course pain without end is brutal. Of course reflecting on that is brutal. So I would say well I cannot do this or that, but I can still think... I can still go to class and do very well. I can still achieve my goals. And small things like, I may be in pain and moving slowly but it is a beautiful day and I aced that essay.

But beyond everything the most powerful thing was just letting myself be goofy. Laughing at silly things, dancing in silly ways because I felt like it and it makes people laugh, which makes me laugh. Making jokes about my illness is very common. My horrible memory. My word errors. My lack of balance. And laughter... eased my burden. I could just let myself be it seemed. And eventually it became part of who I was. Then it became part of my facade, because it was better to hide the pain with laughter than to feel it more intensely.

And I knew the day I could not cope anymore precisely. While I have always known laughter has been vital in my coping. And I have always known it has been part of my facade that hides the level of pain I feel. I knew when my level of pain began to exceed my coping when I would be laughing hard at some joke... a good hearty laugh and I would at the very same time feel deep despair and have to choke back tears. I would have to stop laughing because I knew I was close to crying. You see laughter is a powerful emotion and simmering beneath the surface of me, all the time, was the despair from all the uncontrolled pain I could not manage. That I knew intuitively I could not manage. That I was having extreme problems with and doing my damndest to pretend I could function through; more often than not, failing. But that had been the clearest sign to me, before I ever admitted it. Because it is true. I laugh because I must not cry. I laugh because it was how I lifted my spirits. How I masked the pain. How I chose to distract myself from the pain. How I chose to distract others from my pain. And laughter is a very good medicine. Very good for the brain. But I knew it was failing when other emotions wanted to burst out instead.

Monday, April 7, 2014

What I think about #pain and #coping

In basic terms...

You see when you have chronic pain there may be a point in your life when the pain is moderate with intermittent points of severe and acute. In which case you find that you are coping well. You can work and maybe even have a career. Maybe not the job or career you want to have but you can do it. You can have a life and by that I mean a generally good quality of life that permits some social activity, some activity with co-workers, friends, family and loved ones. Some hobbies and pleasurable leisure activities. Within moderation and within limitations. Never what you could have, never what you want to have. But some. Enough to allow a certain level of quality of life. Enough that you have a good capacity to cope. Enough that you know you are coping.

Then a tipping point.

You may not even know right away that you have reached it. You certainly will try to deny it. Because you are coping, right?

At this stage of the game the pain is always severe and intermittently acute. Or more than that. You are not coping. You are barely pretending to cope. Yet likely you pretend to in order to hold onto your job, at least initially. In order to do so there goes all aspects of your quality of life. No social life. No energy or pain tolerance for interactions outside of what is necessary. This is survival mode. Not coping.

It is not likely anyone can maintain this for long. Although most of us struggle to do so for some time. Which is why so many other aspects of our quality of life are eradicated first. And all that remains are those core necessities. However, even those suffer. Finally we struggle to work. And the stress of maintaining that and coming to the realization we cannot can have a massive impact on us.

You think you can handle it, until one day you cannot. Then what do you do? You have to figure out how to get a handle on it again. And pain management unfortunately may not be an option. While I would love to have a way to treat my pain it is not something I can do. I have to tolerate it. Endure it. And that means in order to not be in survival mode where I wasn't coping with it and often suicidal I had to consider my work situation. I could not consider any other aspect of my life. It was stripped bare already. I already had all the coping strategies one would expect from someone who had chronic pain for a very long duration. But the pain had exceeded them. Unless I get treatment to help with the pain then I am left in this severe/acute level on a daily basis that doesn't permit any options. I explore anything that can help reduce the pain or suffering. And will continue to do so because anything can help with new coping strategies. But when the pain level remains as it is level of functionality remains low. And we sometimes have to acknowledge this.

It has been such a long time since my pain has been in that moderate range that it is really naive of me to believe it will be there again. I remember that time rather fondly really. There was pain. There was limitations. But I prevailed over them. I succeeded. I felt like I had some control over my chronic illness because while there was limitations I could work within them and still achieve goals. Then one day I hit a wall and I just never did recover from hitting that wall. It was just a slow decline from there and no effective treatment. I feel like I have just been really struggling to hold onto shreds of my existence from there on... and really failing in that. But I survived for a long time by making compromises and slicing pieces off and calling that coping. It isn't. I had been coping. Then I wasn't. From that point on it was just denial. However, in this world you are expected to just be so stoic about it all. You are expected to work with the pain. I don't know how they think you can have a life and do that. Maybe they don't care. In the end, when the straws of pain break the camels back you don't care either because then you don't even care about surviving anymore. The horror of this story is that I found when I struggled with chronic pain my doctor did not have my back. When I said this pain is a massive problem my doctor did not have my back. When I went of leaves of absence due to the pain my doctor was more interested in getting me back to work than treating my pain. In the end I realized people are more interested in the appearance of functionality than actual suffering. It is an actual horror story really. We can go from coping to not coping and no one bats an eye. Other than those that love us and for them it is equally painful. It seems like we are expected to suffer by others. Like temporary pain earns you recovery but chronic pain earns you a lifetime of punishment. We have to fight for our rights. For any treatment. For anyone to comprehend that pain is a disability. That pain has a profound impact. And I can't even say that we can win that battle because any treatment is difficult and often minimal. And disability is a fight. And not working? Is just financial instability and guilt. However, we all must know the signs between coping and not coping. Because not coping comes with a heavy price and can be infinitely dangerous. I would much prefer some financial instability and barely coping to not coping.

Friday, April 4, 2014

I need a #migrain #kicker tonight

I have had a migraine since yesterday that has been acute all of today. Because when I went to bed with that nasty migraine not only did I have the pain to deal with I got vertigo lying down.


You get the point. On a rollercoaster ride I could not get off. It began to make me feel rather ill actually. More than rather. I needed to get up. Staggered about for a bit. Tried sleeping again. Same thing. So I got up and did some writing on the computer for a few hours. Eventually took a short hour nap on the couch.

A nap is not enough to kill a migraine like this. Sleep deprivation means migraine all day. Brutal migraine all day. Of course my tripan did nothing at that point.

However I had an appointment in the city. So the long drive did kick in the vertigo more and more nausea. So there was that. Now there vertigo is here to stay.

Still have the pain. And massively bad neck pain, jaw pain and facial pain as well.

So how does on get to sleep like this? With a migraine kicker that is how. My sleeping pill fails at a migraine that is a high 8 and a 9. Usually I don't do anything about it because I hope that eventually I will get to sleep sometime in the range of the dawn hours and get some sleep. If not then it is a real bad day. The next day I may take a kicker... something that works with a sleeping pill to give it a kick. Something like trazadone which is often given to help people sleep but never did anything for me, by itself, but with a sleeping pill works much better. I have something else I forget the name of that is off-label for sleep. It works well with the sleeping pill but I am an utter zombie the next day... but I sleep. And I do not wake up with the migraine. Which means kicking a potential status migraine in the butt. Usually. I don't take it all the time because I believe it would work less if I did and also I seriously cannot function the next day when I do, but it serves its purpose for breaking a migraine caused by sleep deprivation.

I have nothing else I can try but to sleep and hope I shake the migraine. I already tried a triptan and I cannot take another. I took painkillers yesterday so cannot take them today, and one painkiller will not cut it for this level of pain.

#Suicide and the selfish stigma

Stop Calling Suicide Victims 'Selfish' 

"According to a poll conducted in May 2013 by Gallup, only 16 percent of the country finds suicide to be "morally acceptable." But the moral acceptability is not an issue. Suicide is the tragic, distressing result of severe mental illness. By definition, it takes lives. We don't question the moral acceptability of other often fatal diseases such as cancer; we accept that they're awful and terrible and search for ways to cure and prevent them. We certainly don't attack cancer victims for getting sick. Suicide should be looked at in the same way -- we shouldn't be arguing the justifiability of the victim's actions or the ethics of ending one's own life -- we should be looking for ways to stop it.

But every time a suicide occurs, some little self-assured voice is going to attack the victim. The same victim who felt inadequate enough to end his or her own life. The same victim who found solace in death. The same victim who assumed the world would be better off without them. This smug character will go out of his way to insult a suicide victim, calling them "selfish," and "attention-seeking," asserting that "everyone faces obstacles, they should have sucked it up like the rest of us." I've seen it happen countless times."
 This article is well worth reading. I have often thought about the stigma of suicide as someone who survived an attempt in 2010. People say it is selfish because you are thinking about your suffering and not those you will leave behind who will suffer. But of course you think about that, you just think they really will be better off without you. But people still think that is selfish even though they cannot comprehend existing in pain every day of their lives or knowing that you will exist in pain every day onward into the future. It is selfish to not want to suffer like that. And when I survived I decided, yeah, I guess I will just live for the sake of others so they will not suffer because I still craved that end and had no real desire to continue the torment my existence was. I had to find reasons. Make up reasons. I'm not sure if my doctor thought I was attention-seeking or not but I feared it. I feared he would not take my pain seriously. He didn't. So he must have. I had been extremely serious in my attempt. I had unfortunately a little bad luck and bad timing (or is it good luck and good timing? depends on how you look at that one).

"What kind of arrogant, insensitive mindset causes a person to believe that he knows what is going on in a suicide victim's head, to assume because that he sometimes feels sad, he knows what it's like to actually want to kill himself? It's a baffling attitude. A person just died because that seemed like a better option than living. I really can't, and no non-suicidal person can, imagine feeling that completely hopeless and worthless and out of options.
I've felt sad before, yes. I've felt bad about myself before, yes. But I haven't actively wanted to die, so why should I pretend to know what that's like? I've had the flu before, too, yet I don't know what cancer is like.
I'm tired of the victim blaming that makes light of one of the most tragic and upsetting scenarios imaginable. This attitude is shameful and does absolutely nothing to prevent suicides in the future; it merely diminishes mental illness and disrespects the deceased."

Yes, I highly doubt someone who has never cross that line understand what goes through the minds of the suicidal. It is a hellish place to be so consumed by suffering your reasoning turns to rationalizing how it makes sense to die rather than live.

Wednesday, April 2, 2014

#allodynia and #migraines

"Cutaneous allodynia, pain resulting from application of a non-noxious stimulus to normal skin, is a recently described symptom of migraine, with a potential role in directing optimal treatment for migraine attacks. Manifestations of cutaneous allodynia include discomfort when combing the hair, shaving, and wearing glasses, contact lenses, earrings or tight clothing. The exact mechanism by which a migraine attack is triggered is not known, but it has been theorised that, in some patients, once the attack has begun, central neurons can propagate information about the pain process without the need for further external stimuli. This process is termed central sensitisation. The trigeminal nerves, which innervate intracranial and extracranial tissues, account for head pain and other symptoms in migraine. The first-order neurons in the trigeminal ganglion receive input from the dural blood vessels, which is transmitted to second-order neurons in the trigeminal brain stem nuclear complex and is finally sent to the third-order neurons in the thalamus. Studies in humans and animals have shown that migraine pain progresses along this neural pathway, with throbbing head pain occurring early in the attack (sensitisation of first-order neurons), followed by central sensitisation and cutaneous allodynia within the referred pain area (second-order) and finally extracephalic allodynia (third-order). The data also indicate that once central sensitisation is established in the second- and third-order neurons, migraine treatment designed to prevent the initiation of central sensitisation can lessen the pain to some extent but cannot reverse it. Thus, treatment affecting the initiation of central sensitisation should be administered immediately after the onset of migraine pain to prevent intracranial hypersensitivity and the establishment of allodynia. The serotonin 5-HT(1B/1D) agonist anti-migraine agents (the 'triptans') block meningeal nociceptor transmission at presynaptic sites in the dorsal horn. Studies have shown that triptan therapy can abort pain prior to the development of central sensitisation, but not after allodynia has been established. Therefore, in the subset of patients who report symptoms of cutaneous allodynia with migraine attacks, early initiation of triptan therapy is currently the best intervention to achieve rapid, complete and sustained pain relief." Central sensitisation and cutaneous allodynia in migraine: implications for treatment.

Basically once the allodynia hits triptans fail. So triptans need to be taken early.

Let's talk fantasy. #ChronicPain

There is thinking positive and there is completely unrealistic. Thinking positive is trying things to manage the pain and maybe lowering it in some way. Completely unrealistic is thinking the pain will end. Chronic pain really doesn't have an end date and I have understood that aspect from the very beginning. I think you try and fool yourself into thinking it won't every interfere with major aspects of your life but eventually you realize pain can be very difficult to handle. And you can always get more than one chronic pain condition.

Other people sometimes believe when we try a new treatment it will miraculously cure all our ails and I have no idea where they get this impression from. Perhaps they still have this innocent impression that modern medicine can do miracles. It can't. The pills we take are rather unremarkable. They have a ton of side effects worth mentioning but the actual effects we take them for are nothing to write home about. However, I remember back in the day when my migraines became more frequent I was of this opinion. I never thought this for fibromyalgia. It is a complicated condition that doctors simply don't get. It boggles their mind and they don't know how to treat it and many of them simply don't bother to try. When I began to get migraines they began at a steady frequent monthly rate of the get go but I managed them with triptans fairly well. It should be no surprise with completely untreated fibromyalgia, that heightens pain and has completely unmanaged chronic insomnia, a well known migraine trigger... that they became more frequent at a steady pace. Especially as life went on and I could not manage my sleep cycle due to having more rigid life obligations. Have to get up and go whether I have little sleep or not. And the migraines got more frequent. I made this assumption that doctors would be able to help manage them because they are migraines. Migraines are very well known. There are many treatment options. Doctors sound very confident and willing to treat them. I assumed they would help me get back to that same level of frequency that could be handled well by triptans. Instead a steady pace into chronic migraines. And then more. And then more. Until you can't get more than daily. So I am quite aware of the limits of their knowledge and the limits of medications.

It sure would be nice to get back to episodic migraines though. I mean that sounds so wonderful. You have no idea how awesome that would be. While I would still have daily pain with the fibro and the episodic migraines I would have a much more manageable level of pain. I wonder if that is even a fantasy at this point even though i know it is conceivable. Anyway the point is to achieve some lowering of pain intensity or frequency. That is reality. That is the desire. That increases the quality of life just a tad more.

And chronic pain treatment should not be a fantasy though. We should have access to everything that could potentially help manage the pain. And not decades later either.