Visual Snow- Persistent aura without infarction

Visual snow and Persistent aura without infraction are a constant phenomena of your brain playing perceptual tricks on you. Essentially our brains are playing with our perceptions every hour of every day. Some people it does not effect they as much but for others it can cause some severe problems and even anxiety.

 Persistent Migraine Without Infraction is a migraine aura that persists beyond the migraine itself. Generally the longer prolonged auras are visual but sporadically other aspects of the phenomena can be other aura phenomena. Here is a list of the common ones associated with Visual Snow:

  • Visual snow – Seeing snow or television-like static in parts of or the whole of your visual field. Visual snow can be any color but it usually consists of small, translucent dots whose flicker intensity varies from person to person.
  • Palinopsia – A visual disturbance that causes images to persist to some extent even after their corresponding stimulus has left.
  • Tinnitus – Characterized by a noise or ringing in the ears.
  • Floaters – Spots or specks that wander indiscriminately around in your visual field.
  • Light sensitivity - Also known as photosensitivity, light sensitivity is identified by an increased sensitivity to light. This includes artificial light as well as natural sunlight.
  • Phosphenes – A phenomenon characterized by seeing light without light actually entering the eye.
  • Blue field entoptic phenomenon – Commonly known as Scheerer’s phenomenon, it is the appearance of tiny bright dots which move quickly along squiggly lines in the visual field, when looking into bright blue light (most often the sky).
  • Halos/rays – Also commonly referred to as starbursting, consists of seeing halos or rays around sources of light. This also includes reflected sunlight off a car, for instance.
  • Benign fasciculation syndrome – Characterized by twitching of various voluntary muscles in the body.
  • Haidinger’s brush – An entoptic phenomenon in which people are able to perceive polarization of light.
  • Purkinje’s tree – A visual phenomenon characterized by seeing the retinal blood vessels in one’s own eye.
  • Eustachian tube problems – In addition to tinnitus, sufferers of visual snow often experience ear fullness as well as a clicking sound when swallowing.
  • Red eye - Characterized by abnormal redness of the eye or eyes.

  • Read more: - pretty cool site for this sort of thing I have found so far.

    Personally I've had a persistent migraine aura for a very long time and it has been of the Visual Snow variety. 

    Palinopsia- I assume this is afterimages, I do get this a lot and I assume everyone is familiar with this affect. I just get them quite a bit.
    Tinnitus-I had no idea people with VS often had this as well, but yeah I do have constant tinnitus. Silence has a sound and it is not pleasant.
    Floaters- are common with visual snow and these are those round dots you see in your visual field that move with your eyes. I think they are a reflection of something in your eye if I recall correctly. Most people see them from time to time, they are just more common with VS.
    Light Sensitivity- Well, migraines and fibromyalgia ensure light is not my freaking friend.
    Phosphenes- not sure about this one, unless it is the phenomena when we close our eyes we see lights... warping fields of color where there should be none.
    Blue field-Now I also have very intense Blue field entopic phenomenon and I actually thought they were the same thing, but this is actually sort of cool if you can see it. They are just pinprick sparkles of light dancing in the sky... billions of them, in a chaotic pattern really. And they are vivid against a blue background, thus the name, but you can see them against a white background (like a wall) or a computer screen or even anything bright you can see them flicker and dancing, sort of distorting things during the bright daylight hours. A little more about Blue field phenomena
    Halos/rays- This one is a sporadic one for me. Just randomly occurs.
    Eustachian tube problems- yeah, but not sure if this is a VS this or not, but yeah.

    So visual snow... what is that about then? People commonly say like a TV without reception... the black and white static. That is true. It is a grainy, staticy movement imposed on everything you see all the time, but worse at night. It makes things indistinct, surreal and distorted. I often think of it like a Claude Monet painting... sort of indistinct but with movement, shifting. At night I would say it is... not a good idea to drive because the distortion makes things too indistinct. During the day I can see the the static when I look at a wall or anything, it makes things grainy, or pixil-ized, but it is more clear. Of course during the day there are other issues; severe light sensitivity, the blue field phenomena, warping effects, other migraine issues with vision (objects appear to be moving, warping, vertigo, pulsing effect). Add it all up and even during the day things are surreal.

    Here is a Claude Monet painting. You can see what I mean... his style is indistinct and if you can imagine this is how you saw but every dot of color moved and shifted... then you would be seeing this like me! Cool eh?
    And here is an awesome video that will show sort of what we see...

    Something to consider

    Dietary Products for Pain: Truth & Consequences 
    "Of great concern is the potential for dietary supplements to interfere with effective pain management or, worse, to cause drug-drug interactions — ie, various prescribed and nonprescribed agents fighting against each other — leading to serious adverse events [discussed in UPDATE here]. For example, earlier this month [here] we reported on warnings from the FDA regarding the Mexican supplement Reumofan-Plus, sold for pain relief and as a treatment for arthritis as well as other conditions.Among other ingredients not even listed on the label, Reumofan was found to contain diclofenac — an NSAID that may cause gastrointestinal problems — and methocarbamol — a muscle relaxant that can cause dizziness, low blood pressure, or enough sedation to produce mental or physical impairment. One can imagine how such a product might confuse and confound the status of a patient being treated for pain, when unexpected clinical responses or adverse effects are due to the supplement rather than prescribed medications. Worse yet, past surveys have found that patients often do not inform their healthcare providers of all nonprescribed products they are using for pain.
    Even when practitioners know of supplements being taken by patients it poses a dilemma. Marcus and Grollman recommend that healthcare providers should provide guidance to patients about the use of dietary supplements; yet, they also concede that practitioners’ knowledge of this subject often is limited. This is due, in part, to the fact that “education about dietary supplements in many academic institutions is provided by advocates of complementary and alternative medicine in integrative medicine programs” — and such curricula are of poor quality, they believe."
    This is why I try to stick to vitamins and minerals I know are beneficial and that I need. I know of plenty of things I could take that I think would be beneficial. But the question is would they conflict with what I am taking now for medications? Because I take a few preventatives of different sorts that do different things. And would my doctor know the answer to that? Not likely. If he doesn't know what the supplement does chemically then there is no way he is going to know if it conflicts, let alone its potential side effects. Which is unfortunate because some things sound intriguing to me. But I am keenly aware of the risks. Back in the day there were things recommended for fibro fatigue I wanted to try only to find out there were definitely not a good idea for migraines. But unless I had researched that I wouldn't have known. We have to accept unless we are talking to a qualified doctor who knows about these things then we cannot know this ourselves and we are exposing ourselves to risks. And there are homeopathic doctors who do know both and they would be the only ones I would trust to go to about this sort of thing... if I could afford all the stuff they would then put me on. But it is still an option to consider.

    It irritates me when people tell me I should be my own advocate and part of my own healing process and therefore take an active role in my health by taking as many of these things as possible. But I know that side effects are dangerous, even in supplements and it is too much of a risk given my doctor and pharmacist simply do not have the knowledge to help me combine the two. And they are not covered by my insurance either. So all the cost of it is on me.

    Because that is the second thing people always want you to do. Why don't you try this that and the other thing? Because I can only try one thing on my coverage and only for so long... because all those things are expensive. I certainly can't try more than one at once and I certainly can't do to much either.

    If I was rich trust me I would have it handled and I would likely feel way better than I do now. A total multidisciplinary approach. But I'm not. I have to pick the things that I think are most important and natural to the body like vitamins, minerals and other things that are from proteins and so forth that won't conflict with my medication in any way. Then I choose on alternative therapy and go with it until my insurance runs out... this time its therapy and that's damned expensive.

    It is one thing for my mom or a family member or someone who loves me to help me out with advice or strategies to try (such as going to a homeopathic doctor). It is quite another for some random person to assume I'm not doing Enough for my own treatment as if not doing enough somehow means I want to be ill or as if doing all those things will suddenly cure me.  My shrink actually mentioned a couple of things and I know she was being helpful and all... but with her bill, no way can I afford either of the things she mentioned. Not when I'm making less money and spending money on her. Now who is crazy! So now we are talking about free things to do... smart woman.

    Two roads diverged in a wood, and I—

    TWO roads diverged in a yellow wood,
    And sorry I could not travel both
    And be one traveler, long I stood
    And looked down one as far as I could
    To where it bent in the undergrowth; 5

    Then took the other, as just as fair,
    And having perhaps the better claim,
    Because it was grassy and wanted wear;
    Though as for that the passing there
    Had worn them really about the same, 10

    And both that morning equally lay
    In leaves no step had trodden black.
    Oh, I kept the first for another day!
    Yet knowing how way leads on to way,
    I doubted if I should ever come back. 15

    I shall be telling this with a sigh
    Somewhere ages and ages hence:
    Two roads diverged in a wood, and I—
    I took the one less traveled by,
    And that has made all the difference. 20

    --Robert Frost

    So we didn't get to choose the road we travel on. And it is a rough and rocky road. There are pot holes to trip on and ditches to fall into and curves you don't expect and walls to climb. And cliffs to fall down. And sure we fall down those cliffs and we can say:

    a) "Oh my God I've fallen down a cliff! I think I broke my body. I might be dying. I've fallen and I can't get up." And then just lay there in pain.

    b) "Oh my Gog I've fallen down a cliff! I think I broke my body. I might be dying. Oh, wait maybe not. I think I'm just in an insane amount of pain. I'm all good. Give me a few months and I'll slowly climb up the other side." And then in slow agonizing pain climb your way back up to the road.

    And neither A or B is the right answer. Because we are not on that road alone. When we fall down it is not wrong to lean on others to help us climb up the other side. Little holes hurt. Falling down cliffs is another story. Sometimes we need a little help on our road and That Makes All the Difference.

    And... although we may not choose This road of Pain (because who the hell would eh?) the road does have forks in it and those forks have choices in how we walk this rocky road. Both paths are just as rocky, bumpy, with cliffs and walls to scale. But down one fork you see challenges to your life, but you see a life, down the other you see pain and anxiety and depression. We do have choices on our road every day. Not easy choices and not easy battles. Because it is a hard, hard road to travel. But maybe if we Choose to travel it and choose how to react to it maybe that will make all the difference,

    I do love that poem. Truly is one of my favorites.

    Reflections on Fibromyalgia: questing for sleeping

    Killer migraine-a-thon

    It is Status Migraine time. Yay. Actually it is Day Four of the migraine-a-thon. I get through three days with stoic determination and it is usually by day four I'm screaming on the inside. On the outside I expect I look constipated... like I'm holding all that pain in tightly before it explodes. I just don't think a migraine is meant to last this long. It really starts to mess up the neck and jaw area. I can't sleep with my mouth closed it hurts so much. Also I get this tingles across my skull that say 'Hey you might pass out if you blink'. And I get this vertigo when I'm sitting that makes me feel like I'm falling forward. I've noticed this a lot when the pain is acute. This increase in vertigo along for the ride.

    Worst thing about my hormonally triggered status migraine-a-thons is the nausea and the IBS. I swear I cannot eat because every time I do... I really regret it. I've literally gone to the bathroom more times in the last three days than I have in the last three months. Not fun at all. Really takes a gals appetite away you know? If the nausea didn't first. So by day four I'm sort of sick. I try to drink water to hydrate myself but it is hard to keep up. You just feel run down and drained, like you had the stomach flu from hell. And I wonder how any medication I take even has time to even freaking digest?

    I have not noticed any emotional consequences from the extreme pain though. Since I am not working it means I don't have to work tomorrow. That is a Relief. If I did have to and I am in this much pain that I am already frantic with it and wish desperately I could do something about it, but I know there is nothing I Can do but wait it out... if I had to go to work tomorrow... I would be working myself into a depressed state and then be anxious.  No one one wants to be in acute pain and then know the next day that pain will get worse but they will be in a situation where they will have to pretend they are not in pain, while trying to focus and trying to concentrate and trying to to make errors. How can that make anyone happy?

    It can't. And the Migraine Zone makes it easy to get frantically depressed and thing unreasonable thoughts because the pain is so intense and lasting and you are already consumed by it. Status migraines are dangerous migraines for more than just stroke and heart attacks. They are just plain dangerous for the pain we are in. So I am profoundly relieved I don't have to work tomorrow.

    Well you can't say I will not literally try anything even mindful meditation

    My shrink had mentioned meditation and deep breathing as a way to just pull my mind away from thoughts that are causing anxiety. I actually don't think this is necessary because I generally know when I'm in a 'mood' and am going down 'crazy road' with my thoughts and I just intentionally do something else that takes more brain power than thinking random thoughts does. And it works. Just because a migraine causes an emotion doesn't mean you have to fall head first into it. You can be aware of it, know the cause of it, and actively do things you know will help with it. And habitually I don't worry while trying to sleep because I've been an insomniac for a Very Long time and that is something I just learned a long ago. But if I'm anxious or depressed prior to a migraine and want to chill out I figure this would be cool to learn because sometimes I just need to learn to freaking chill out... because sometimes stressful situations seriously ruin my cool and compromise my ability to cope... er, maybe because I try to think of solutions when I'm in a 'mood' at precisely the times when I can't think rationally and am in too much pain which then just makes it worse when I realize there is no solution. Yeah. Maybe. And obviously one of the most difficult time to relax is when I have a killer migraine and I'm trying to sleep. Which would be last night.

    I was going to prepare a soundtrack for this meditation gig because I have insane ringing in my hears that would seriously ruin my cool if I concentrated on it for more than a minute (I actually think that might be a way to torture someone, just a room with no noise except that loud ringing in the ears)... but its all good because I play the radio all night in the bedroom for that very reason.

    So I go to bed. Wicked migraine. Lay on my back and breath in through my nose and slowly out through my mouth with my eyes shut. And repeat. And repeat.

    First thing I notice: Deep breathing hurts my head. I mean my head is already Pulsing insanely with some intense pain and when I breath in I can actually feel the pain stretch. I was like Wow this is so non-meditative.

    So second thing on my list is to Visualize something. But I didn't actually need to. Because lying down and apparently breathing like that sort of flared that perpetual aura symptoms that are associated with VS, one being when you close your eyes you see a wonderful field of pulsing lights... but in this case they were far more vibrant than usual. It is actually sort of hypnotic watching them so I thought hey I'll just zone out watching the pretty lights.

    Then I realized the ringing in my ears was rather loud. Okay, never mind, just ignore it and listen to the music.

    Also the pillow touching my head hurt. This is was not a comfortable position to be in. Also the skin on my head was just hurting because that was the sort of migraine this was turning out to be.

    And man was my head killing me. Be one with the pain. No, no... don't do that... that makes it hurt more. Seriously... how am I supposed to meditate when usually I distract myself from the pain and here I am just doing nothing and the pain is just There throbbing and pulsing. I noticed it is pulsing with my heartbeat, which doesn't seem to want to chill.

    Okay, okay, breath in and out. Imagine you are gathering the pain in and spewing it out. Out damn pain, out!

    Well, I can't tell you if this would work or not if I was in a state of anxiety because I wasn't. I'm just practicing. And I'm in a wicked migraine right now so not thinking was actually really easy... I really had a fine case of the stupids before this migraine hit and was already mentally sluggish. It was sort of relaxing, but if the idea was to keep me in bed and relax me enough to sleep... then that was a fail. Once again the reason I can't sleep when I have a wicked migraine is because I have a wicked amount of pain. I ended up laying there another two hours doing my usual daydreaming (which is what I do in replace of worrying) before stumbling up to get a triptan. Then waiting for that to sort of work and eventually falling into a fitful sleep sometime around 7am. So unless you can meditate yourself into a coma I can't see it helping for insanely painful migraines like these.

    Also doesn't hurt. And at this point I'm just practicing the deep breathing part and the act itself so that when I'm anxious or whatnot I can utilize it as a tool to physically calm myself down and stop the thought processes. Maybe it will be a good tool or maybe at least a sort of destressor. I don't know.

    I've always liked cognitive therapy myself for the depressed thoughts... you know, when you think those thoughts that come with depression and go down that slippery slope... I just go wait a minute, that is unreasonable... the emotion is there, fine, but the thoughts are not valid. They are always distorted by the emotion. At their core they are based on true facts of living with pain, but distorted by depression they become larger and more profound and extreme than they should be. When you know this you can recognize them because they occur again and again. So that works for me. As I mentioned in previous posts you can't stop the emotion especially if it is literally the prodrome of your migraine, but it is temporary. It is linked to the migraine itself and when the migraine is over so is that extreme emotion. Thought patterns on the other hand can become embedded in your brain, you don't want to form those habits. So i like to think about those thoughts and what I'm actually saying about myself, my beliefs and the world and turn those distorted thoughts around into positive truths and core principles.Chronic pain and cognitive therapy: taking care of your emotional health But anxiety is different than depression. And meditation can be a useful pain management tool to learn overall... I`ve read it has benefits neurologically for stress and so forth and so doing it regularly, anxiety or not, seems like a cool thing to add to my toolbox. Assuming I can learn to do it... or find an App for that. I mean obviously not something you learn overnight.

    Chicken meet egg

    It is almost impossible to dicuss emotional states and chronic pain seperately. Expecially when you are talking about migraines and even fibromyalgia. So I have this issue with depression and occasionally anxiety... both tied to chronic migraines. But prior to a migraine as someone mentioned on my Facebook page is the prodrome stage where those states are quite common. In fact I'm quite aware of the fact I get depressed before some migraines because it is a very weird, non factual depression... as in non-situational... it just is and I know it will pass when the migraine does. But it can be a rather intense depression or a melancholy I need to sleep for a day depression. The intense sort is nasty and dark but at least I recognize it for what it is, but it is not a nice feeling.

    Just like when I get a manic migraine... that sort of hyper, jittery state I get in where I have a billion thoughts and talk a mile a minute.  And those ones I actually don't mind. I mean I annoy myself with all the chatter that comes out of my mouth without thinking first, but I get a lot of work done. I mean a lot. And I am very creative during those migraines.

    The first couple episodes of anxiety I ever felt came on from the migraine associated vertigo while driving... because I was driving with vertigo, and I could not focus my eyes, and I felt like I was falling, and things were distorted and it was freaky... so yeah that made me have some anxiety. Second issue is that fibromyalgia sort of makes it easy for your body to be hyper vigilent and react quickly so if you have an anxiety response it is damned easy for your body to have a bad one, and likely for it to happen again. A lot of people with FM have this problem. I have never had it, but I have had the symptoms of it... as in physical responses that have been over reactions to stimulus just not the anxiety associated with it. At least not until I added in the chronic migraines and thinking about returning to work... and a future being consumed by that pain. Like driving with MAV... that triggered the same anxiety response.

    Everyone from doctors, to neuros, to psychologists concur that my depression isn't a chronic depression because it isn't a depression that sticks around and it doesn't have the same characteristics of that sort of depression. It is basically connected directly to how much pain I'm in. If I'm having a long status migraine... I'm depressed. But is that because of the Pain... or the Migraine... or Both? Chicken meet egg. Certainly the depressed thoughts are All about the Pain. As in gee I wish I were not in so much freaking pain. As soon as the pain goes down a few notches on the pain scale the depression is poof gone because I can once again use my ability to reason.

    Anxiety is a little more tricky because it is future related, it is about a fear, or anticipation I will be put into a situation where the pain will be worse forever and ever... but again when I get the anxiety (because again chronic migraine person here) I am usually either getting a migraine, have a migraine, or getting over a migraine. So is the anxiety caused by the Migraine or even the FM or just Me or all Three? The reason I think this one might be a little tricky is that I was doing a bit of research on it related to FM and how our system is a jacked up and it turns out you can actually be in a state of anxiety physically and not know it... as in physically have symptoms of it, but not have the panic or fear.  Racing heart rate, trembling, vision that is shaky, palpitations... things that people with FM can have erratically or when stressed. It is possible if I think of anything that bothers me, anything that causes me fear or worry, and I was in this pre-anxiety state it would take much to jab me into a physical response of anxiety. And even if I calmed my emotions down quickly my physical body might stay jacked up for quite a bit longer. So I know thinking about this one thing causes anxiety sometimes... but I have had situations where I have thought about my youngest brother being ill and possibly dying that distressed me greatly and I had a similar physical response. My body reacts to fearful thoughts like lightning. And even when I'm calm emotionally my body remains agitated. When the FM body reacts to stress it goes overboard, because it is already hyped up to begin with, and the few situations where I was in a real stressful situation I was a shaking, palpitations, wired wreck for days. It actually gave me chest pains. Oh, and I remember long ago I once broke up with my boyfriend and the stress of that situation which was unpleasant to say the least made me sick for a week... shaking and trembling, palpitations, migraines, lots of nausea and so ill I could eat anything but peppermint tea and I ached everywhere. Yeah, we are physically not well equipped for stress. We i think we have a wire thin trigger for anxiety if the event that causes the stress also causes an emotional reaction.

    So doctors and shrinks and all of us concur that we have to deal with emotional issues because they are dangerous to us. They make it harder for us to cope with conditions that frankly are already hard enough to cope with. And they can in fact make things worse. Granted. But these emotional states are also caused by the conditions themselves... they are symptoms that arise from the condition. Doesn't mean we still don't have to deal with them and try to handle them in whatever way works for us, but damn that makes it a bit more complicated doesn't it? And here is the thing... they can't cure my migraines, or apparently even get them down to 15 a month so if my depression is related to pain levels or the migraines themselves, then it is going to go something like this; depressed, not depressed, depressed and anxious, not depressed or anxious, depressed again, not again. Awesome. So our brains are wired for pain, but apparently wired for emotions too, it is comingled. And besides that because pain sucks we do have emotional responses all our own to complicate it even further.

    Reflecting on the reasons for anxiety

    I had my third head shrinkery appointment today and it was an interesting one. I was abit befuddled by a migraine so it wasn't until I got home that I really thought about some of the things we talked about. But one of the things we talked about is how that I like to think myself into anxiety. It is a common thing we do because when we think about the pain, past, present and future and we rely on our experiences of it it sort of creates this cascading effecting in the brain... we know what it has been like, we know what it will be like and it is overwhelming and Bam anxiety... which propels you from thinking into emotion. We talking about that being the fight or flight response and ways to get out of that physical response. Which actually made me think about FM... because unfortunately FM really means we are sort of stuck in the fight or flight response. That is one reason we have problems sleeping... because it is like we are always sort of alert. Anxiety or not physically the FM body is primed for that sort of overreaction response. It is like when something startles me I jump and scream like a little girl... and then all day I'll jump at every little noise because my body can't calm down. So when she was talking about that I was thinking "Awesome, how do I turn the off button on a system that doesn't have one?" But I've have my ways of stopping myself from thinking about things I shouldn't think about. Overthinking is a very bad past time I find. Distraction is a very good idea. She was most concerned with worrying while I try to sleep, but I don't tend to worry once I'm actually in bed because long, long ago as a wee child I learned if I did that (being as I was a worrier as a youth) I wouldn't sleep at all. I daydream when I try to sleep. The only time I don't is when I had a status migraine and the pain overrides my ability to think about anything other than the pain. I told her then I get up, repeatedly and often don't sleep at all. So the tricks she is teaching me are to bypass that.

    What got me thinking was her asking me what made me anxious about the thought of returning to work. Other that the fear I could end up suicidal, which is obviously a logical fear for long term pain. And for a moment I was stumped because I am very anxious when I think about returning... because of the increase in pain, but I have tolerated that pain for decades so what exactly is bothering me about it now? I know partly it is the fear that I somehow don't have the strength to fight that battle anymore. That the emotional instability of tolerating that much pain worries me. But it is more than that really. Emotions fluctuate with coping. Work itself is a good thing. It makes you feel productive, self sufficient, intellectually stimulated, useful, out in the world... very good things. It is the pain consequences that are horrific.

    So if you think of it like a hermit does such that you have literally gotten rid of everything non-essential in your life in order to maintain a job but there is value to that job in your mind so you hold onto that no matter how painful even if it means all other aspects of your life have to be sacrificed then the anxiety starts to make sense. When pain increases, not counting suffering, just physical pain... and counting FM and the associated memory issues, all your attention goes into that one thing and not very well to be honest. Not only do you not have a life outside of work, but you don't really remember much of anything either. It is all distorted by the pain. Hazy. Indistinct. Elusive. You lose large chunks of time. It is like being in a pitch black room holding a candle. The candle is burning hot and you are too close to it. The light and heat sears your eyes and you can't see anything else in the room, even if someone stood a foot away from you. But the light is all you have so you sit as close as you can even though it is very painful. If someone does come into your little sphere of light it is hard to see them because the heat warps them and your eyes burn, but you focus on them as best as you can... but as soon as they step away they are consumed by the darkness and not only can you not see them but you can't even remember them. It is just the burning light. My anxiety doesn't stem from work per sa, although a stressful work place doesn't help... it is that any work makes the pain all-consuming and it terrifies me when I lose all that time to the pain and when I can't remember things and when I can't function. It terrifies me that that would be my existence. And even if there was no emotional suffering I would just be adrift in this pain forever, this sort of non-life. A focused torture where I am holding on to that burning candle and staring into that bright light, and can't see anything thing else, and don't even know why I'm doing it anymore.

    If I ever wanted to do anything... have any sort of functional life. Have the energy to have any functional life. Manage my pain. Do the things other people take for granted. Then I would not be able to work. And if I had a leave from work and managed to do those things and didn't get rid of my pain... but managed it better, and increased my wellbeing and so forth and quality of life. If I dared not only to want those things but actually reached for them... and then was sent back to work and then had to sacrifice them all again? That would be worse than cruel. It was hard enough cutting all that from my life the first time. People expect you to do thing to improve your quality of life but don't realize that those things are only possible in a certain environment. Exercise is only possible when I am not working. I like to do it and I find it useful but the amount of pain I'm in after work makes it literally impossible to even attempt. So I have anxiety about even that... wanting things I feel like I shouldn't want because I feel like if I am 'well' enough to have them then people will assume I'm well enough to work and then I will be back where I began. It is like the Neverending Story... where the Nothing consumes everything.

    And unfortunately I figure I can control the physical feeling of anxiety with the methods she was talking about because anxiety is a new thing for me so if I get control of it now it might work... but I can't change reality. The reasons for the anxiety remain. And deep down it still terrifies me that I will be trapped in a situation where the pain will consume all of me, as it has in the past. And that is so... sad. I wonder how much time I will lose. How many faces I will forget. How many memories will never be remembered.

    Invisible disability insanity

    I'm reading this book on fibromyalgia which I'm planning to do a review on so no point specifically talking about it, but I'm reading parts talking about the author addressing directly the reasons other medical professions do not believe in fibromyalgia as a diagnosis. Despite all the evidence of course. Despite all the research. I mean clearly there are specific indications of things going wrong with neurotransmitters and hormones and the sleep cycle and so forth. But what? It may be something else? It may be it is another condition altogether. It may be it may be it may be. Some of the reasons are purely idiotic when faced with this evidence considering the prevalence of the syndrome all over the world (not just Western civilization or the wealthy or what-freakin-ever). Diagnostically sure there is no blood test or x-ray that can say there you go, right there it shows you definitely have FM, but that can be said for many conditions and there is a framework for FM which apparently they disagree with even though it was designed the same way as many other frameworks. It isn't a new syndrome by any means either and even if it was that just means the cause is becoming more common which isn't so unreasonable. I mean when someone has a headache there is no way to verify it, but we know headaches exist... there is no blood work, x-ray or CAT scan that can prove it but I would say more people would be familiar with the phenomena. We have a syndrome with specific widespread pain, specific main symptoms and other symptoms that can be part of the syndrome. We know from research what is happening even if we don't know the specific cause.

    Yet you cannot see it. So what? What is the obsession with this?? The criteria for diagnosis is difficult and that is why it takes so long to confirm... but there is specific things going on in the body that cannot be denied. Inside where you cannot see them, where you cannot measure them with a simple little blood test. So it is a little more complex for your simple simple mind. If it is too hard to understand stick to diagnosing the common cold and let the big boys handle the big problems you freaking moron. We don't need doctors like you. Maybe when your narrow minded ass retires we can get somewhere. It seriously disgusts me that this attitude would still be around it the medical community. The more I read the more pissed I got that there were doctors actually saying this crap and since the response to it is so easy you have to wonder if these doctors are so insistent it doesn't exist because they said so from back in the early days of research and are too stubborn to admit they are wrong, or that they are seriously that dumb that they do not realize how idiotic their arguments are (I guess doctors would make poor philosophers if they can't even formulate a proper argument with valid reasons for it... and not just stupid statements for no reason).

    I get it from everyone else. Seeing is believing. Pain is subjective. People do not get chronic pain. And fibromyalgia is really hard to explain since there is no cause and it is wide spread muscle pain... but the cause is in the brain, and there are so many associated symptoms... and anyway, somewhere along the way the explanation becomes complex and scientific and you lose most people. Assuming you don't have fibro fog and lose yourself while trying to explain it. Most often I still to the basics. Its chronic pain, and pain is in the brain, its a syndrome with numerous symptoms including fatigue, sleep dysfunction and fibro fog. Hit the main points and stop while you are ahead. But even if people accept the condition, and there is more awareness of it, people still make odd judgements or have bias or there is workplace discrimination, or there is insane issues if you ever, ever try to get disability. I've simply never tried myself because the thought of fighting that battle just makes me want to curl up in a ball and make the world go away. I've heard too many horror stories. But most of us want to work and most of us do work. I certain have and did until the chronic migraines, a comorbid condition from hell (and a common one due to central sensitization). Point is, we either are invisible, because we don't talk about it, we wear a facade of well being and don't tell anyone we have FM for fear of discrimination ( and that is a very good fear to have in the workplace). Or we understand why people do not fully comprehend the condition because of the subjective nature of pain and the fact we show no visible features of being disabled (excluding a severe flare like when I shuffle very slowly and can't lift my feet or move my hips much and people stare at me funny because I look so young and fit yet I'm barely walking... good times).

    But from doctors it is insulting and hurtful. First they are taking away that validation we got when we Finally got diagnosed. When Finally we had an answer. If they take that away then what they hell do we have and how the hell do you treat it? I'd like them to fill in that gap. Some of them think we are nuts. And that is just insulting. First of all if depression is what I have instead of FM... then I have been severely depressed since I was a child, even though I have been quite happy most of my life... since I am an early onset and slow onset FM type... how does that explain that? You'd think I'd know I was depressed for that length of time, especially the decades when I was really quite happy. What form of depression is that? Maybe I suffered from anxiety? Oh wait I have never suffered from anxiety.  But worse... I have depression now, or at least my shirnk say a depression associated with my level of pain, directly correlated to my pain levels... some idiot doctor would go 'ah ha you have depression so you much be depression not have FM' and then I'd have to stab him with a pencil. Another one says that we have no problems at all, just a low tolerance to pain... and who ever that idiot is I hope we gets FM and we see how he tolerates it. Studies show we have the same tolerance psychologically, just how physically threshold is lower because of the physical differences in our neurotransmitters as noted in the actual evidence they seem to not care to read.

    I can't believe they are still bickering over this and because of it we get less funding, less acceptance in the medical community and less research. It has got to stop. And what does that mean for us as patients? Are we supposed to interrogate our doctors? Quiz them on their beliefs and knowledge of FM before we see them? Carry around a briefcase with the research in it so we can verify our syndrome to them?

    This has seriously got to be the worst Invisible Disability ever. When even some narrow-minded doctors are all like well I don't believe it exists. When we encounter such a doctor we should say:

    A) what a coincidence I don't think your mind exists. I have research that proves FM does. So prove to me your mind exists.
    B) Okay, so if we ignore all the research and evidence for whatever reason because you have an unfounded belief... then tell me what causes a, b, c, d, e, f, g, h,,i,j,k,l,m,n,o and p. Give me a new diagnosis please. Plus I also have these separate conditions comorbid with whatever that new condition is a, b, and c. So have luck with that little puzzle. Oh... and I'm not depressed.
    C) That is an interesting belief that you have there. It obviously means nothing to me, so I'll see myself out. I believe when I leave the room you'll cease to exist, so let's hope my belief is right and yours is wrong.
    D) Funny thing about belief is that is not based on facts. So I have some facts about FM, such as what is going on in the brain, hormones and sleep cycle. I would like you to now tell me that if it is not FM what is causing those biological changes.

    and finally

    E) your are an arsehat. That is all.

    Bad pain day and wondering about our distractions

    This is a picture of the inside of my brain right now. For some reason my migraines have been going nuts and it isn't even the time of the month for them to go nuts yet, so that is going to be fun. It has been real consistent and last night I had a real acute killer one which actually made me get up... stagger into the kitchen and take a triptan. That enabled me to get to sleep but this morning I woke up with one and it has been around all day. Very symptomatic as well. The pain is lingering at an 8 but I don't want to take anything for it; i'm out of triptans and the toradol shot made me quite sick last time. My ears are ringing so loud I just have to have some background noise so it doesn't drive me nuts. I'm extremely sick to my stomach which is a rare symptom for me for a none hormonally triggered migraine. The pain is radiating all the way through my head and down into my neck. I can't tolerate any pressure at all. You know how sometimes if you apply pressure in certain areas or such it sort of releases a bit of tension? I'm beyond that point... my skin hurts too much. Movement hurts too much. But that being said it hurts more to lie down in the quiet and just be there in the pain. So I'm going to try listening so some music softly and doing some writing to focus on something other than the pain. Although I might need something to combat the nausea because that is getting a bit distracting.

    It is weird what we do to distract ourselves from pain. I know those of us with chronic pain are able to do things in pain others cannot comprehend because we have the ability to take a bit of pain to distract segment ourselves from the majority of pain. And studies have verified it as well. But I think it is a trick we learn by always being in pain. I have never heard someone with an acute migraine deciding it was a fine idea to read a book... but I read A LOT. A LOT A LOT. I cannot emphasis that enough. People think it must be painful to focus on the words or difficult to read. They would be right actually on both counts. Sometimes it is actually impossible under certain conditions but I read under dim lighting and that actually makes it easier with my highly sensative eyes and never with light that is direct. I also sort of speed read, so I don't focus on each word, sort of skim... so you might say I read very quickly. I do get fuzzy vision and double vision, but when you read like I do it isn't that big of a deal and if it becomes an issue I switch to my Kindle where I can make the letters bigger. The Kindle doesn't have a compter like screen but a flat non-lit surface like a book. MOST important unlike a TV which is bright and makes my eyes hurt and my vision hazy, a book absorbes me and my mind into a world... I don't see the words I see the story and that distracts me from the pain. If I can get lost into a story and not think about the pain, or as much pain, then AWESOME. But I can only do that because I get migraines all the time. And after enduring a day with a migraine at work I want to relax and distract myself from the pain in a way that is going to give me comfort. 

    I am also a freelance writter and ebook writer so sometimes I will write to distract myself from pain. And people are always berating us for being on the computer when we have a migraine... if you had an acute migraine you wouldn't be on the computer. Really? Well my computer screens brightness and contrast is dimmed down to nill almost, the lighting in the room is dim and indirect. Some might even have screen covers of different shades, or programes that help with visibility. Either way we know how to make in more comfortable. Secondly, again, we are always in pain and when our level of pain is not screaming acute we can function better than a normal person would at moderate pain. The computer is a great source of comunity, of disctraction, and connection to others. Why wouldn't we use it since a lot of us are hermits? With my writing it is more of focusing on something; rearching an article, writing an article, writing a story, editing a story... it requires thought and focus and it distracts me... expecially when I get into a flow.

    People expect us to be laying around wallowing in pain all the time. If we did that we would be tormented by the pain. There are times when the pain is so severe we cannot get out of bed and that pain is made even worse by the very fact we cannot be distracted from it.

    Wow... there is some coolness in migraines...

    Super cool things about migraines I saw this and had to read it... and it is hilarious... here are the ones that made me laugh...

    1. I’m skinny.  I’m teased mercilessly, but all of that fun diarrhea, nausea and vomiting keeps me the envy of all those healthy people around me who have choices.
    2. I know the difference between “happy” and “healthy”.  The first I consciously practice, the second I pray for.
    3. My electric bill is cheap.  Keeping the lights off due to constant light sensitivity will do that.
    4. I’m smarter than my doctors.  They keep telling me “I don’t know”.
    5. My car will live forever.  It rarely leaves my driveway and has maintained its gorgeous good looks and value throughout the years.
    6. I can speak in tongues. When aphasia hits, no one understands what I’m trying to say but me.
    7. I am easily amused.  It takes a lot less to make me smile, laugh, or appreciate something.  When the lows are so low, even a little high seems big.
    8. I rock at conversation.  When prodrome makes me forget what I’m talking about I can change the direction of conversation on a dime.
    9. I have real live superpowers. This includes super sensitive eyesight, hearing, smell and taste.  My skin is so sensitive I can feel a door open across a room.
    super Kool things about migraines

    One makes me laugh because of all that weight loss I've had on topamax and my recent influx on complaments because of it... if only they knew it was a drug, diarrhea and nausea. doesn't that sound like a blast?

    number two is just something we learn with chronic pain that douche bags who judge us for smiling and laughing will someday learn when they get sick

    As for three... yes living in a cave is cheap on the electricity I'll admit.

    Four is a little sad but general doctors really don't know that much about migraines... its when you know more than your neuro you need to be freaked.

    My car has not moved for two weeks.

    I think I can speak in tongues. Funny enough when I start garbling up my words... my man still understands me... I think he gets migraine speak after fifteen years with me, isn't that a scrary thought?

    I am extremely easily amused. I apparently giggle at everything but I say I have a girly chuckle. My boyfriend works with things called nipples at work and I tell him he needs to go fondle all his nipples... and it literally cracks me up, actually I laugh every time he talks about them... its the visual image.

    I also rock at conversations... the end up being weird rambling conversations about stange things, and often guessing games thrown in there for fun.

    I think she is right we really do rock the super powers. Seriously we can hear, taste, smell and see way too well. Unfortunately I only trust my senses fifty percent of the time... they lie a lot when my brain misfires. Unless I do see air.

    Fickle Fibromyalgia: my pain flare stories

    Venturing out of my abode got me thinking about fickle fibromyalgia pain. Recently I have been thinking about the variety of FM symptoms because some of them overlap with chronic migraine symptoms such that I don't know which is the cause... such as vertigo; migraine associated vertigo or FM related vertigo, or the balance problems and even the sensitivity to sound and light. Thing is FM came first and migraines later and then chronic migraines so no matter how much my neruo wants to label everything chronic migraines he is actually just saying things doctors had actually labelled everything FM before.

    But my trip and any trip actually or any unexpected activity reminds me of the fickle fibro pain. How it can hit like lightning in any muscle group or all muscle groups. How it can be a deep muscle ache that gets worse and worse, grinding and deep until your mobility is completely restricted, or a sharp nerve pain that arches through you or stings like cold fire or burns.  The pain can be crippling and many of the incidents I remember can be so different and triggered by different things or nothing at all... so fickle.

    The first time I was very young. Excluding the aches I had as a child the first sharp crippling pain came when I worked a job where I was standing for eight hours at some customer service job. I remember the pain of doing that, but I was familiar with that sort of pain already and not diagnosed at the time. I believe at the time they had said I had 'hypermobility with soft tissue pain' so pain from standing was due to me being double jointed. It sucked but it was familiar. What wasn't was the fact that after enduring it for eight hours and getting home and sitting down, with profound relief, I couldn't stand up. A brief moment of rest and I tried to get up for supper and pain arched through my legs and they collapsed. It was the first time I realised if you have severe fibro pain you cannot stop and rest. There is no point to it because resting and getting up causes severe pain, sometimes causing your legs to just give out but most definitely causing a lot of difficulty in getting moving again because of intense pain... so it is better to just keep going, no matter how slow.

    The next incidents of intense pain occurred when I was an undergraduate in university because that is when my fibro because more severe due to sleep cycle changes and so forth. Also when I was officially diagnosed, but not treated. I flared up really bad one year but there was no reason for it. I was living off campus at the time. I was physically fit in the sense I walked to school every day. I walked my dog every day. I rollerblade and so forth. Fairly active for someone with chronic pain. The flare up nearly crippled me. My fifteen minute walk to school went from fifteen minutes to forty minutes and was extremely painful. It took a lot of will power to achieve. Even when I got there it was difficult to sit at my desk, to actually sit down, and then to sit for the entire time. I just remember trying to pay attention through the pain. And that is why I remember that flare up so much, because it reminds me of a migraine.... trying to think through pain and not being able to. That pain was all over pain. It hobbled me pretty good... but it was not just the legs, it was back, shoulders, neck... every damn place. And no cause. It lasted about six months and then was gone. It was in summer and wasn't a weather thing. Just not sure what was the cause.

    One university triggered one was caused during a summer job. One thing about FM was that I could not work during school. I wasn't capable of it. Work took too much out of me, so during the summer was my save up money time. But unfortunately sometimes it took a little too much out of me anyway if I chose the wrong job. We learn that the hard way with fibro being as it is so fickle we learn what jobs we can and cannot work. I learned as a kid, and during summer jobs that standing eight hours is extremely painful but what can you do? Service industry jobs are easy to get when you have no experience. Next job I learned lifting things repetitively, or moderate lifting is a very bad thing to do if you have fibro... I got costochondritis. But I didn't know it. I started getting twingy chest pains which I ignored, they got more frequent then more painful then more constant. The local doc said it was stress. So I ignored it and it got worse and worse. Until when I lay down it felt like someone was squeezing the life out of me, pressure and pain. I ended up in the ER one night because it got severe one night when I went out drinking. That doc said he didn't believe in FM and sent me away. Needless to say this pain wasn't going away so I made the trip home to my family doc who did a chest x-ray and told me what it was. I guess because I have FM and maybe because I had aggravated it so much by working with the pain it lasted well into the school year. The pain receded very slowly over six months. It has never, ever been as bad as that.

    When I was in graduate school and I needed to get my thesis signed by all the dudes who needed to sign off on it I had to get my copies printed then run around to find the props to get them to sign and then get the thesis to the right place in order to meet my deadline. This campus was huge. I did a lot of running around. I can't walk, walk, go up stairs, walk, walk, go up stairs without beginning to feel pain. It isn't possible. So I started getting pain in my hips, knees and feet. I had to keep going because I needed to get it done. I started moving slower and slower and getting more and more distraught. I was running out of time but I couldn't physically more faster. At the end I was moving so slowly I might was well not have been moving. I ended up in my department crying because I couldn't get it done. A professor found me and I explained (I had not been aware I could get disability benefits on campus by the way so no one knew I had fibro) he called my missing prof and got him to come to me and then got someone to bring my thesis to the right place. I was extremely thankful. I was also stuck there for an hour before I could move again.

    The next incident was years later because like a good fibro girl I aimed for a desk job and settled into it. But flares for no reason happened anyway. This one just occurred and surprised me because I could not explain it. It started in my feet, in the arches. Severe arch pain in both feet. I could barely walk just shuffle around. I could not really lift my foot and every step hurt. I tried fake arches. An anti-inflammatory cream my doc gave me. Foot exercise. Nothing. It lasted a year and then just gone. Then started in my wrists, both wrists, tendinitis I guess but so painful i could not put any pressure on them, had a hard time writing with them, had to wear a brace at night and sometimes at work. They hurt like that for about eight months and then just stopped. 

    So when my feel suddenly hurt when I wore those sandals I remembered that pain. Those are flares of pain. And pain in specific spots. Pains other people get for different reasons but we get those sorts of pains for no reason they are part of our normal life. The aching muscles, and general soreness... that is everyday, not a flare.  The skin pain, that is a different kind of pain altogether. The nerve pain also a different kind of pain. FM has a lot of different types of pain.  Because it is fickle. It can hit when you take a fifteen minute walk, which has happened to me, or not until you have walked for an hour.

    Camping adventures

    Sorry, this little guy amused the heck out of me. I took at least fifteen shots of him going up and down this tree to get little pieces of bread. I'm easily amused. Clearly I've found a hobby for when I retire.

    So three days of Camping Adventures was about as much as my body could take But it was better than it could have been. Potentially it could have been quite painful because I knew those inflatable bed things can flare up every tender point on you in the most nasty of ways in one night.

    Tip #1: Thick inflatable mattress and one of those foamy things on top. It worked awesomely. I had some strange brusing after day three and I ached all over moderately but the most intense pain was in my knees and elbows. Not sure why the elbows but it hurt right at the tender point and nasty. But still that accumulation over two nights, so decent really. Better than the one night on the thinner matress without the foamy thingamajig.

    Tip#2: Apparently if you have fibro don't wear sandles even for a short time. If your are like me and that tendon in your arch from time to time gives you intense pain... even if you have those comfortable sandles with the liquid gell inserts that someone once told me are 'granny sandles' cause I bought them at a store known for comfortable shoes... duh. Not sufficient. I was not in them long before I felt a twinge and then an ache. The I got up to walk to the truck and just lurch to the side as that sharp pain hit one side. I was hobbled. Changed back into my sneakers. It calmned down thankfully... last time that flared it was a year of shuffle walking.  But the arch still aches. So good footware a good idea.

    Tip#3 is a standard go anywhere for migraines and fibromyalgia... a hat and specs. As I'm sporting here. This cap is my camping go to because it had the most shade from the light. I had two hats and two pairs of specs for this trip, this is my lighter specs because it was cloudy at this point. On a camping trip this is more vital than normal which I realized the moment we got there... cause you are camping, as in, the outdoors, as in, where the sun is all the time. It was Bright and I was Outside in the Brightness. I thought about ducking for cover. Hiding behind a tree. Digging a hole. But I toughed it out. It gave me a headache real fast and I had to keep on top of that quickly.

    Tip#4 Bring all sorts of migraine medications. All of them. Sunlight=migraine. Storm rolls in=migraine. Sunlight again=Migraine. Can't sleep in a tent=migraine. And you want to treat them as fast as possible before they cripple you.

    Tip#5 The sun is evil. For migraines, but also for fibro. If you're like me it will heat your skin fast and irritate it and then that skin pain starts. My nerve damaged hand hurt from the heat, and then on the day when it rained and it was freezing it stung like a sonofagun. Not much you can do about these weather changes except be prepared for both sides of the coin... which I was not by the way. So have some things for a lot of warmth just in case it gets cold.

    So there was a pain spike in some areas of the body and overall aches.  There were two brutal migraines. One I treated with Maxalt and ended up taking a nap for three hours. The other was the last day... the sun just was too much and trigger a doozy. I used my Toradol shot which sort of worked, about 80%, I still had vertigo and migraine dumbness and perceptual problems. Problem is the toradol made my stomach hurt like hell so it was a darn good thing we left that evening or it would have been an unpleasant night.

    The trip itself was interesting.  We visited with my man's sister and her kids which was great. It was miserable on day, raining and freezing so that sort of sucked because you can't do much and inside the tent was also freezing.  But other than that it was a good visit. I find though camping initself is merely a change of scenery. I am fully capable of doing the same things there as here; reading and writing. I didn't so much because my man does neither so I felt the need to find something to fill his time. I bought a game of Uno and played with him for amusement when it was raining and then later with his sister's kids.  Then read my book all night while everyone was sleeping. Couldn't really get any writing done unless I wanted to freeze my fingers off.

    However it was a successful venture and I know for short durations I can phsycally tolerate it and therefore I can do it again. Preferably in better weather. And maybe in a larger group.

    The Hermit is venturing into the wilderness.

    Where I will find a cave, make it a home and rant about random crazy things like hermits do.... no, wait, thats not it... what was it now?

    Oh yeah,

    I'm going Camping! Now keep in mind I WANT to go camping even though I know it will be painful. However, I have tried to make it as painless as possible and this is my first trial run to see how it goes. If it goes well, then more camping, if not then I may have to tweak it. It just to see how much pain we are talking about here. Just moderate pain that I can handle or more than that which would compramise all the funness of it?

    1) first thing I did is add one of those foam things you add to your bed to add to our blow up mattress. I learned the just the blow up mattress, which feels fine when you lay one it will actually cause every tender point in your fibro body to ignite on fire. And you will not want to move... ever. So the foamy thing is to prevent that. It might work.

    2) got my specs and my hat and sunblock to help block the evil, evil light.

    3) got all my meds, and a good amount of pain meds just in case.

    4) we are camping in a groun with all the amenities and not in the boonies... and this is a big deal if you have fibro with IBS-D and migraines that can flare up IBS-D and/or severe nausea.

    5) and all my electronics and a couple books to keep this raging insomniac entertained.

    It is only for three days.  So a good trial run for me.  And it should be fun.  We are visiting with family as well. 

    anniversary of my suicide surivival

    It is the anniversary of my almost-death. That day where the pain literally almost won.

    This is obviously a big deal to me. I think about where I was then and where I am now. But this year I think back to then and the impact of others. Actually shortly after my survival I worried about how I had worried or hurt others, more so than concern over myself. And later it was because of the hurt I had caused to others that encouraged me to continue on. 

    Yet, I know it was a traumatic thing for me. Something that echoes on. Affected me greatly for a year and then I never seemed to find my core stability after.  But what about my family? How did having me do something like that affect them, short term and long term? I can't say with my spouse. He is very uncomfortable with the topic. He was always aware of how much pain I was in, but just never knew my desperation could reach that level, that I would go so far. And he never wanted to me return to work, especially not that work place and was pissed when they sent me back. Because he is terrified it could happen again. I know some of this because he says things and others I infer from the fact he would rather pretend it didn't happen, because that way he doesn't have to think of this possibility it happening again. I told him the act itself, was one of frantic, desperate pain... blinding pain. But having had it happen and surviving it was a good thing because it makes him and my family and other aware of the level of suffering I was enduring. Because my personality type is to not talk about all that, to work through it one my own and just push through it.  So the the act literally forced into the open what I was feeling on the inside as well as the magnitude of the pain.

    My mom and I at least had a chance to talk some on the trip she took me for. And she gave me that down time and space I really needed. She was there for me in the moment and I will always love her for that.

    I worried how my bother reacted to it all being as he was the one who found me and brought me to the hospital. I worried because I think that is a horrible thing to have done to him. To have had to see me like that, to know what I had done to myself and to get me to the hospital. I don't remember it all clearly because I was so drugged up on sleeping pills. Makes it hazy in my mind. I did talk to him recently and he said when he saw me he had never been so angry in his life at what I had done. I'm glad I know how he felt. It is a true emotion. A true reaction to seeing such a thing and realizing the truth of it. I'm glad he told me about it because I need to know the consequences of my actions on other people. He also told me he had never gone to sleep that night. Normally he would have been sound asleep because it was very late.  But he hadn't gone to sleep at all for some reason and so he was still up. Then he felt like having a snack and wandered up stairs where he found a bloody knife and in the bathroom more blood... which is why he then interrupted me in my office. I never knew that. And I guess I ought to be really thankful he chose that one night to stay up really late playing a video game.  I get the anger though because anger comes when you think someone has done something insanely stupid.  But in my case it wasn't like that. It was... There is a point when pain consumes you reasoning abilities, and you are desperate for relief that isn't there, you are tired but cannot sleep, you have to work but know you can't, you know you can't continue like you are forever. You are perfectly aware you are going to cause others pain, but after they grieve they will move on. You just want yours to finally end. It is not a stupid act, it is a desperate over thinking act saturated in pain.

    And yet because of it and only because it that is why I am in therapy now. I'm not fond of therapy as a rule. But repressing my pain and repressing the emotional distress pain causes is a Bad idea in the long term. I get that my emotional stability stems from the pain, and that the pain is a constant factor. I don't want to be stuck in the same position, the same scenario again and have the same thing happen. I can learn from a profoundly traumatic experience and try everything I can think of to prevent it from happening again.  But I still hate my brother had to see me like that and will remember it. And I hate that my bf had that scare that worries him all the time now, but he can't talk about it because that would make it 'real' and 'possible'.

    I'm fixating on the concept of pain vs suffering

    It is just something I've been thinking about. Obviously the pain is something we have limited control over. It is insanely frustrating because we try so many numerous methods to limit the pain in various ways... and what pain is left, if unmanageable, if too much to handle that there can cause a great deal of emotional distress. Apparently my doctors and even this new shrink concur that is the sort of emotional instability or depression I have... directly correlated to the amount of pain I am in. I just get overwhelmed by the pain. When the pain subsides my mood dramatically improves. But, it is the constant battle of unmanageable pain over time that causes this emotional strain. You know what is coming, you know what the battle has been like and you know what it will be like. Because the undeniable fact is, with my conditions and many others the pain is inescapable. It is a fact. And it is a fact at times it will be brutal. And during those brutal times expecting me to function is cruel, but its a cruel world out their boys and girls and that is exactly what it expects of us.

    So pain is inevitable to some degree. Is suffering inevitable. I used to think the answer was yes. Doctors simply expected me to suffer. And they didn't give a damn about it. And suffer I did. And I wondered why do I have to suffer like this? Why do I have to struggle to get to work every day, struggle to get through the day, struggle so damn hard, suffer so damn much when no one gives a crap about how much I suffer only that I do what they what me to. And I never do enough, because I can never be like a healthy person... can never have a perfect attendance record because some days the pain just wins... can never concentrate as well because on the days I don't let the pain win and there is a significant amount of it it compromises my ability to think. It seemed no one cared about that struggle or the suffering, as long as I did it silently and complacently. And one day I realized I don't want to suffer like this every day for decades and decades and decades. I'd rather die. That is a logical conclusion to come to when you suffer like that. But how much is suffering linked to pain? I know we can reduce the amount we suffer by simple things people who do not suffer pain cannot even comprehend. They think 'How can you laugh and smile when in pain. You must not be in pain.' and that is a sign of someone who has not endured long lasting pain because those with chronic pain do learn that while the pain is inevitable suffering is not. I learned long ago that masking my pain behind a facade of humor made it easier to distance myself from the pain... and eventually the facade becomes the reality. It isn't really positive thinking... it is not dwelling. It is allowing yourself to be happy. So many just that helps with suffering. Another thing people without chronic pain do not get is that by doing things you take your mind off the pain to some extent. Your focus and concentration is reduced and in a work situation this can be very stressful but distractions of the sort where you actively set your mind on something else have been shown in studies to help with pain tolerance. Because pain isn't about just the sensation, it is about the interpretation. So that too helps with suffering. And maybe just acknowledging that we can't be rid of all the pain, that it is beyond our control, but that we can have some control over the interpretation, the response to it, and our reaction... in effect our level of suffering might in-itself help.

    Head Shrinkery Apt #2

    I've been really anxious about seeing the new neuro because I worry it is a sign I'll shortly be returned to work.  This makes me anxious because I know short term I can handle pain. I know short term I like my job and value it as a distraction. But that long term, too much pain boggles the mind. And I know that for the last few years I've been very tired of the struggle. I've had difficulty maintaining a facade. I've had a hard time with the suffering. The emotional strain has been always present. It crops up at the strangest of times. I honestly have a hard time describing it. It is like grieving... you are coping with the loss of someone but something will remind you of that person, of that loss, and the emotions will rise up and almost overwhelm you. Its the same feeling, but instead of grieving and loss it is this feeling of despair and hopelessness. This knowledge that I have to do what I am doing (work) that there is no escape and that I will have to just endure the suffering. A horrible feeling. I do all the same things I've always done to cope with pain, reduce suffering, but I have no hope of ever having the pain being less than it is or ever not having to have a break from work. And I suppose that is the straw that broke the camels back for me. And so, yeah, some serious anxiety about returning and this sense that it was inevitable and that I would have to deal with those emotions of despair being trigger at the thought of it, let alone the reality. But after talking to my shrink about it... okay, she saw what happens when I talk about it. Because as I said the reality of pain and talking about it is one thing that often makes that sensation come up and I have to choke back tears. I had a migraine as well that day, so I swear I was close to just breaking down... and I don't do that in front of people. Point being we chatted about it and she said I should not be anxious because she would assist me with the neuro and my insurance company in getting me long term leave from work.  And I honestly have never felt such a profound sense of relief in my life. I think it will be beneficial to have someone share the emotional toll with my application because doctors seriously do not even consider it and so I get declined again and again. And I really really hope it makes a difference. And the thing is she gave me a bit of hope and that is a pretty damn big gift to give someone with a few words. That someone, other than my man and my mom, actually has my back. My doctor doesn't have my back, I think that's been established. My last neuro gave up on me. And insurance companies don't want to pay. And my employer has never had my back, in fact they are the cause of my emotional distress in the first place. So having someone say they will fight for me almost brought me to tears again.

    Visual snow

    'Visual Snow' May Be a Distinct Clinical Entity
    "Visual snow is almost always associated with additional visual symptoms. It therefore represents a unique clinical syndrome – the visual snow syndrome," he said at the annual meeting of the American Headache Society. "It is distinct from visual aura in migraine; migraine with and without aura are common comorbidities, but we don’t actually know at the moment what is the pathological link between those two conditions. And the intake of illicit drugs is not relevant."
    Dr. Schankin went one step further, proposing new diagnostic criteria for the visual snow syndrome: visual snow plus at least three additional visual symptoms out of nine identified in the study, in the context where these symptoms are not consistent with typical migraine aura and cannot be attributed to some other disorder.
     "I suspect it’s migrainous because most of these people have migraines. But it’s not aura. I don’t know really what it is. It’s incredibly frustrating because nothing works. You can try every antiepileptic known to mankind, and nothing works. So I agree that this is something we need to pay attention to and help these people."
    "Patients are commonly given the diagnosis of persistent migraine aura or a posthallucinogen perceptual disorder, especially after LSD intake," he noted.
    He and his coinvestigators studied members of an online support group for visual snow (Eye on Vision). In the first part of the study, they analyzed data from an Internet survey among 120 patients that asked about visual symptoms. They were 26 years old on average and about two-thirds were men.
    Results showed that in addition to visual snow, nearly all patients reported other visual symptoms, such floaters (73%); persistent visual images (63%); difficulty seeing at night (58%); tiny objects moving on the blue sky (57%); sensitivity to light (54%); trails behind moving objects (48%); bright flashes (44%); and colored swirls, clouds, or waves when their eyes were closed (41%).

    Well I honestly never associated those other visual symptoms as part of the visual snow... more like part of the migraines or part of a persistent aura... granted there did seem to be a lot of weirdness there and also all of that was atyptical of my normal right before the migraine visual aura that presented in a very classic way and actually has responded to medication. The visual snow has never been changed at all by medication. But to think that it is a seperate condition comorbid or connected to migraines going on literally gives me a headache... I seriously do not need any more comorbid conditions.

    Anxious about neuro pending neuro apt... in fact I know now, I almost want to ask for a different one

    There is always a certain amount of wariness when you are going to see a new neurologist when you have chronic migraines. This is because a) he could know significantly less than your previous one b) he could be an egotistical bastard c) he could completely change your medications and cause some significant damage or d) he could be completely indifferent to your problems and your problems could be severe.

    In my case my previous neurologist was very knowledgeable and I was very discouraged he ran out of ideas, but I get how he did. With my aura becoming more intense and not responding to any of the medications known to treat auras, with fibromyalgia and my sleep issues being a complication that seems to constantly aggravate the migraines and with the preventives we have tried not having any real impact on intensity or frequency. Medications have done different things, just not anything significant. He was just spinning his wheels so he tried one more thing and it was actually helping but then there was an adverse affect. So suggested a headache specialist clinic. Fine. I get it. The clinic has a long waiting list though.

    So my doc said while we are waiting why not try this 'migraine specialist'. So he referred me on to this neuro fellow. Then I go on short term and as I have posted previously I don't think it will lead to long term... but I think I need long term. I think I am currently unable to cope with the pain I am in and work. I like work the work I do, I like the people, I like the distraction, and I like the positive stress... but the pain is far more intense, less controlled and it makes me frantic and the in the long term I can't handle it and the doctor can't just keep putting me on these short term leaves and I can't just keep missing the amount of work I do. Nor can I pretend it isn't a problem when it is. My emotional stability has been an issue since 2010; prior to that I could pretend it wasn't, I could pretend it was just a bad pain day that made me have 'dark thoughts' even if I had lots and lots of bad pain days and work was making me feel like crap emotionally, but I could be so stoic about it. I can't even pretend anymore. So it needs to be dealt with. I need the long term. I need to fight for it. I essentially need this neurologist to understand I need to be on long term on that first meeting because it depend on him to fill out the forms. So it depends on how he handles his migraine patients. And I found out he isn't a migraine specialist at all... he is a neurologist and they do not put migraines high on their list of priorities, the first rounded neuro I saw at a hospital knew very little and he ran out of ideas after three preventives  Three. Out of over a hundred. So i worry he will not have the knowledge to be able to handle me and know where to go with me after all the meds I have tried. I worry he will because he won't know what to do either a) take me off everything and but me one something he is familiar with which will really screw me up and could cause things to get significantly worse or b) blame me for them being as bad as they are... a common enough tactic. Which will piss me off. I know my migraines when chronic not because of medication overuse and I will be pissed if he blames me and then takes away all my meds for what is it like six to eight months? I will die in that time.

    So I am worried about the knowledge and I am worried he will severely mess up my treatment. Now the other two worries that he is one of those specialists with a huge ego and is dismissive of people who do not listen to him, or he thinks have mental problems not health problems, or dare to contradict him. Those concerns are very valid in my case because it turns out this doctor was the very first neuro my younger brother went to see about his migraines. His migraines are complicated but not complicated like mine. Mine are daily and complicated by FM, sleep and hypothyroidism   His are complication because he does definitely get migraine with aura... but he also gets what presents as classic cluster headaches.  But his pattern is erratic. Straight headaches for a month, nothing for a could of weeks, then straight migraines for several weeks, then nothing for a month. And it could be that he has both mixed in there. He also has sleeping issues indicative of FM, but is sure he doesn't have it... but either way his sleep problems are a huge trigger. He doesn't respond to triptans at all.  So he goes to this guy and he didn't even confirm my bro had migraines, just said so your doctor tells me your getting migraines.  He told him things like to stop taking OTC painkillers like his doc told him to do.... but if he needed to take 4 because he is fat and 2 will be nothing to him. Then he said there are only two options one is botox and the other is some preventive my bro could not remember but a think it must have been Elavil because it is always first, and my bro had already been given it by his doctor and it did nothing. Well, the neuro says often GPs give the wrong dosage to fat people and it is like a drop of water in the ocean. Your so big you would need far more for it to be effective. Then, of course, he told him to exercise. To not drink caffeine  He didn't explain anything to my bro about migraines or answer any of his questions. Didn't ask about his symptoms. Nothing. Utterly effing useless. My brother refused to see him again, was really pissed off and has not seen any neuro since. He is not on a preventive or alternate pain control they use when triptans don't work. Because that guy was an asshat. So I told my brother to see my old neuro who was awesome, knew his stuff and got migraines himself. A very nice man and he never insults people.

    I looked the guy up online to check his ratings. He has a good rating, so middle of the road. Some people really like him.... his MS patients it seems really like him. Other patients find he talks down to them, some where outright insulted and some questioned his treatment and he refused to treat them after they dared to do so. More than a few he would diagnose something quickly, insist it was what it was like 'just anxiety' and never see them again and it turned out to be something serious when they got a second opinion. More than a few times. More than a few times he insulted people.

    And this is the sort of guy I want to treat my complex migraines. Who i want to look at my treatment and figure out something new or a different approach  Yeah right. It isn't going to happen. I don't even know if he will be the least bit helpful at all for helping to put me on disability if he is such an asshat. I guess I will find out the hard way. Joyness. I've dealt with his sort before. I'm usually amazed their monstrous egos can fit in the room. And I already don't like him for how he treated my brother. It pisses me off that he treated him like that. I almost want to go back to my doctor and refuse to see him on those grounds. Send me to someone different... because if that is how he treats a new migraine patient and one who gets severe migraines and is having trouble working and finishing his degree as a result now then those of us who have had migraines for years have no hope in hell for better treatment. He was completely dismissive to my brother at the early stages of treatment, when he could have been of the most help and figured how what was really going on.

    Migraine Mechanism

    I was thinking about the after effects of a suicide attempt... the echoes it has

    So I tried to commit suicide in Aug 2010

    I surivived

    I had a bit of time of work to recover- a short term leave and it was hardly sufficient and I was very upset and I was informed I had to return and I was not going on long term. I felt my doctor didn't comprehend the price of pain, didn't care about suffering and didn't have my back... it was a betrayal. So I knew when things get bad, I could never depend on my employer because what they do is actively make things worse and I could not depend on my doctor and I had no escape, because I had seriously hurt my family by my actions and would not do that to them again. So I was trapped in this pained existence with no escape route. I became just numb, which is a form of depressed.

    I went back to work and just did what I was told and tried to just survive in this numb state of acceptance that this suffering was my life. I missed a great deal of work for horrific pain days and they came down on me hard for it, but I didn't care at that point. They had me fill out forms about it and my insurance company at least backed me saying they were valid sick days so I could not be fired.

    When I got out of this numb state I moved into anger. I was furious for how my employer had treated me. Not just for the incidents that led up to my suicide attempt but all the prior incidents over the years. I get no one wants an employee like me. But I'm a person and I deserve some respect and not to be treated like that or threatened or to be made to feel so guilty for being sick. And I was angry at they system that my doctor didn't seem to give a crap about my suffering enough to even try to get my on long term disability when I clearly needed it.

    Then when that tempered down and things got back to 'normal' I realized I was having a hard time emotionally. I wan't coping so well anymore. It was like in 2010 I had reached my saturation point in all the pain I could possibly take, so I tried to end it... and now, I'm still at my saturation point. I can't take it any more. The pain drives me frantic at work. When acute migraines hit me I don't sleep. Thinking about the future and getting through the month makes me anxious. I get bouts of intense emotional distress at the drop of a hat... just from simple things like people asking me how I am doing really, or in the morning if I'm in a lot of pain just thinking about getting up, or in the middle of the day at work thinking about how I'm going to get through the day. Tears spring to my eyes and I have to choke back this intense emotion. And I think it is because the pain was so bad I wanted to die, but I didn't and now I don't know how to deal with it after the fact now that I'm alive. My brain is still screaming 'Why should you have to suffer like this?' and I can't come up with a good enough lie to trick it.

    Or at least I think that is why I am more emotional now than I ever was prior to 2010. Prior to my facade was better. I was in the same amount of pain and I had those emotions, but I masked them from others and kept it hidden... because that's what you do... that's how you get through the day and function. But you can't do it forever. I know that now. I always knew that. After though I know it more and so it is more emotional.

    So it is these echoes of that attempt that keep on coming after that make you think about things. Make me realize I can't work. No matter what my doctor says or thinks or how he fills out those damned forms... the fact is I can't. I can't cope with that amount of constant pain and work. It is impossible and it will kill me. So I'm doing all the right things to survive. I'm asking my doc to put me on leave, he did, I'll ask me to put me on long term, he will fill out the forms... I'll ask that he do a better job of it, but I don't know if he will. I joined the FM society who seem like they will be very helpful and supportive. I am seeing a shrink to hopefully help work through some of these issues dealing with pain brings up and the emotional fluxes I have been having. This time I will do all that I can to protect myself and hopefully it will work. Obviously just giving in and doing what everyone else wants me to do because it is easier to give in than to fight isn't working for me... it is killing me. So I have to fight for my right to survive this pain.

    I would love to just redirect you to the new site...

    But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...