Migraine Awareness Month Blogging Challenge #30: Blogger's Pick

Choose your favortie blog post from any of this month's prompts from someone else's blog to share with us, and tell us why it's your favorite.

I've really enjoyed participating in this event and reading people's blogs.  I've made sure to add as many of those blogs I can so I can add them to my blog and keep connected.  It is difficult to find any one post to mention over another since I enjoyed so very many of them but one really resonated with me because, well, its been a rough battle for me the last couple of years and I still have a few raw mental wounds over it all.

Migraine Interrupted: Say What? The whole 'at least it is not cancer' and 'at least you will not die from it' stuck with me.  As the post says cancer is understood and curable and has an end, whatever that end is.  In the past I have often thought about this in my darker moments and in a way wished I had some sort of potentially deadly disease that sure, would be horrible, but I would either survive the treatment and go on to live a perfectly normal life or I would die and either way it would be resolved. There is something so envious about that... the fact that your suffering as an end date. Every time I say that I feel guilty like I am undermining the struggle someone goes through when they battle for their lives to survive such a disease, but its not that, I understand extreme suffering, I just envy them their victory. And I know loved ones fighting that battle so what I would prefer is to take their suffering and pain onto me because I don't like to see others suffer and I certainly don't like to think of losing them... but when it comes to myself it is different. Or even just a sure treatment... we are going to do A and if A fails we are goind to do B.  Nor can you underestimate having a disease Everyone comprehends and understands.  I have fibromyalgia, which really very few people get... most have no even heard of, so I'm used to it.  At least people know what the word migraine means, but as soon as you say you get chronic migraines then it becomes beyond comprehenion... why do you get them? why can't they be treated? have you tried A, B, C... Q and Z? Or maybe Advil, I hear that's good because I saw that on TV (don't fear the light) How can you get them everyday? And no one gets all the neurological symtpoms... they only know what they have heard; light sensativity, nausea, headache, sparkly lights, right? Yeah. Right.  And I don't like it when they said 'at least it won't kill you'... because in the end we wish it would and sometimes, as this post mentions, we will turn to suicide just to end the pain and the rate of suicide is high.  So if the pain is not treated and we are just left to suffer and we end up killing ourselves that is somehow not as bad as a disease that kills us? But migraines can kill us, they have the potential to with strokes and so forth so there there is the danger not that people know that either.  When I got nerve damage in my hand due to a long status migraine, which I still think is weird, but that's what the neuro said... people were literally stunned and amazed a migraine could do that.  Yet they already knew all the suffering, my own suicide attempt, my poor work attenance, my numerous short term work leaves... yet this permanent damage shocked them.  Maybe because it was visible or tangible or something permanent.  People just don't see the damage and suffering of chronic migraines. I wish they could. And I hope the more awareness we bring the more people will understand that a disease that had no end is plain torture.

Anyway, it has been a pleasure blogging with you all!!!

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Migraine Awareness Month Blogging Challenge #29: "More Often than Not"

Today is Chronic Migraine Awareness Day. People with Chronic Migraine have a Migraine or headache more often than not. Think of and share a random act of kindness that you can do for someone with Chronic Migraine.
I've had chronic migraines for over a decade, about fifteen years or so now.  Anyway, I have a random act of kindness someone did for me that I'd like to share because it was pretty damn amazing.  When I left University because my migraines were simply too severe for me to continue on to my Phd I took a job at a hotel as a Front Desk agent working various shifts including the nigh audit. The shift work put me from chronic migraines to daily migraines. My doctor had just begun to play around with preventatives, so I had nothing. I still had violent migraines at that time so... lots and lots of tossing my cookies... and tossing my medications before they became effective.  Plus my hormonal migraines at the time occur, obvously with my mestral cycle which at that age, could be extremely painful on its own.  So I was working on Chrismas Eve when I got hit with a horrific migraine.  It was day three of bad migraines due to it being the hormonal cycle but day one of my period, so I was hit with a double whammy, severe cramps and acute migraine.  I literally could not stop throwing up.  I could barely stand. My aura was so severe in my left eye I could not see. I couldn't think straight.  It was horrible.  No way in hell I would be able to work my shift.  My boss tried to find someone to replace me but obviously no one could come in.  They tried to help out as best they could.  Then in comes a Guest to check in and he is a former worker at the hotel from years and years ago.  And seeing me, how pale and shaky I was and how much pain I was in.  He suggested he would take over my audit shift for me.  Well, he told the manager this, as I had then been back in the bathroom.  I could not thank him enough that he would just take over a shift for someone he did not know, for a job he did not do anymore because he wanted to help me out.  He said his wife got really bad migraines and he didn't mind.  I've never had anyone do such a random act of kindness quite like that very, but I do know I will never forget it.  It meant a great deal to me. My boss even gave me a lift home because I could not drive.

If I worked with someone and they were like I felt yesterday or like I felt like that that day... where you get to the point where the pain itself is making you feel unsable, ill, shaky with an irratic heart beat... or the other symptoms are making you so ill that literally in both cases you can barely stand.  Hell, yes, I would take their shift.  No one should have to suffer like that at work.  We all do when we have to, but we shouldn't have to.  Not when it's that bad.  I have plenty of stories where I had no such saviour and horribe bosses... but thats a different post.

I would also be there for them to talk to openly and honeslty, with no judgement about what it really is like to suffer with chronic migraines.  The emotional toll because sometimes we all need someone like that to talk to who gets it, who will not judge them and who will not make them feel guilty.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Feeling rought, doc appointments and new medications

I have been off sick from work for two days.  Rough hormonal hell week.  What makes it worse is that when it pain peaks I just can't sleep.  Earlier in the week I had a day where I got about three hours of sleep and got through work but unfortunately by the end my aura symptoms were nutty and the migraine went apeshit on me.  The next day I had horrible vertigo from bed let alone when I stood up and a wicked migraine.  That night I did not sleep at all. Martin brought the phone into me and told me to call work when my alarm rang... and I said I can work with no sleep! Yeah, who was I kidding... I'm not 18 and I had a migraine and the aura symptoms were again haywire on the lack of sleep.  Just seeing and walking are a big issue.  In fact I feel damn ill, shaky, weak, my heart rate keeps hammering and then going back to normal, my stomach feels ill. I feel like crap all over.  Worse than yesterday.

Honestly I haven't been feeling well for awhile it just gets worse with the hormonal migraines and the sleep deprivation.  But with the vertigo episodies the other MAV symptoms, my vision being all warpy and making it hard to focus on things.  Plus the migraines. Plus the sleep deprivation.  And I'm just tired, so very tired.  I'm trying to hold out until October but frankly I just wish my doctor would put me on a leave of absence until then before I start passing on from these things.  Constantly throwing up on some days is bad enough and that alone can lead to passing out.

Anyway doc appointment.  In regards to my partial seizures... as I predicted first thing he thought... sleep paralysis and I had to explain it definately is not that, then he sited other more tame side effects from Topamax it could be and I'm like nope not those either.  So he is not sure, it could be, although it is rare... or it could be due to sleep deprivation, or both.  Either way he is lowering me to 25. mg which is practially a useless dose.  I expect I'll see an increase in migraine intensity and no more migraine free days. 

He also is putting me on toradol in shot form.  It was something he believe the neuro was going to do but we just don't have the time to wait so he prescribed it now.  It is for these acute migraines as it is exactly what they give me in the ER, but I can take it sooner and hopefully prevent a status migraine or treat these hormonal migraines better.  I'm not sure since it never works in the ER, but it might be too late by then.  It did work when I used to take it in pill form before it killed my digestive system, so it has the potential if used at the right time.  And injections will bypass the stomach issues anyway.  Good thing I'm not afraid of needles... although it is a little intimidating figuring out how to give yourself one the first time, but I'll firgure it out.

I don't know why the insomnia is worse honestly. But it's driving me nuts.  My insomnia even conquers sleeping pills apparently... or my pain does anyway.  My sleep has been obviously more restless... not counting those odd seizure things. I've been getting frequent sleep paralysis episisdoes which tells me I am sleep deprived anyway.  I'm also getting vertigo in the morning before I get up... I jerk awake feeling like I'm falling, feel weird and sick, then it settles... then happens again... and settles.  On those days if I get up I take a few steps and fall into the closet... severe balance issues.  I still get hypnotic jerks which do not help with insomnia by the way.

Migraine Awareness Month: "I learned the hard way..."

We learn a great many things the hard way, through experiences that are often difficult and unpleasant. Of all the things you're learned the hard way, what sticks in your mind the most?

I like to learn the hard way so there are many many things, but one thing that sticks in my mind is an early lesson before I became a hermit. There was a time I did socialize on the occasional pay day Friday with my boyfriend and some friends after work at the local bar. It was a time when I was struggling with dealing with the onslaught of chronic migraines, work and what remained of my social life. I had not yet shed all the frilly parts of a life for the bare essentials of survival. It reminds me a great deal of the time I was struggling with fibromyalgia and being a full time student, trying to have dreams and ambitions. Its what I call denial. The fight is painful as the disease really. You flail around trying to hold onto things until you realize it is impossible... you need every ounce of energy to just get through the day and the pain. Work being necessary is the only thing that survives the purge and even that just barely. ... Later you learn to fill the ragged gaps with what you can, things that fill the void somehow, distract you from the pain and make you feel less hollow; but it is definitely learned the hard way.

So I was flailing around trying to hold onto a semblance of a life. I had gotten through the work day with a migraine that had been reasonable... as in it had not been painful enough for me to treat, so it was a no medication day, which is a damn good day. When my boyfriend wanted to go out I wasn't feeling awesome but I was determined to go out as well because I hated the way the pain was forcing me to always decline and not spend time with him and others. So I went out. And being out is not a problem. If I can suffer work I can suffer being in a nice cool, dark bar with a few friends. I had a beer, which again isn't a problem. It wasn't a good idea but it took the edge off the pain. That was what was a bad idea, because it dulled the pain and I started not just being there I started having a good time. Because I was having a good time I had another beer and the pain seemed to just go away. More people came out and I did what any young person does... I had a blast and had a good time. I began to realize the pain was coming back and so I drank more.... thinking I'll just out drink the migraine until I can't feel it anymore and then when I get home I'll crash and go to sleep and it'll be a great night sleep.

You can't out drink a migraine. For one thing I was mixing booze so that was not good and dehydrating. So more dehydrating as the night went on and the migraine just got worse and worse. I stopped drinking but didn't matter. I came home and was drunk enough I could have slept well if I was tired but I'm not the type to pass out easily (not with my uber insomnia) and a migraine didn't help... so I just lay there and sobered up while the migraine slowly got worse and worse and worse. By about 4 am the pain was so severe I had to try and treat it, even though I knew having alcohol in me probably wasn't a good idea, so I tried a triptan rather than anything else. It totally didn't work, maybe because of the alcohol maybe because the pain... don't know but I do know the combination means you just can't treat it. I ended up in the ER 6 am... I don't recall how they treated me, I think with a toradol shot but I remember being embarrassed because it was my own damned fault and I was still a little drunk. Even that really didn't work. I just had to ride out the pain. Hydrate. Sleep. And always remember never, ever drink alcohol when you have a migraine, or are getting a migraine because it will get worse and you cannot out drink a migraine.

Some people cannot have alcohol at all or they will get a migraine. I can't touch wine myself, that stuff will trigger a migraine really, really fast. But I can have a beer (can't seem to tolerate anything else though) or two on a day where I do not have a migraine with no adverse affects. But I only do when I socialize... so once a year I guess. I sure figured that out the hard way. And it took more than once by the way. Because that day I had a migraine and over indulged but there were other times I had no migraine and had gone out and mixed beverages which triggered a migraine, equally unpleasant to have happen when you are already drunk. I only went out about once a month back then so my tolerance to alcohol was low. Never took me much to get a buzz. So I began to really moderate my drinking and switched to just beer and refusing 'shooters' people offered. Found out as long as I went out on good days and never exceeded a limit of three beers, with plenty of water and food I would be fine... the beer actually makes me sleepy and that gives me a good nights sleep, which gives me the opposite of a hang over, as in no headache and no migraine. Assuming I play by the rules. But that’s a good day and those don't happen often these days.  So I was capable of having a drink without triggering a migraine, which is nice, just had to learn that when I already had a migraine a drop of booze was an aggravator even if at first it didn't feel like it. You'd think common sense would tell you that... but like I said... denial. I want to go out and feel normal and have fun.  Paid the price for it for sure.  That sort of pain is mind blowing.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Lacking sleep

I have been having some sleep issues.  More so than usual.  I am an insomniac and with fibromyalgia than means when I get to sleep I don't exactly get great quality sleep, but I do get decent sleep with my sleeping pill.  And the sleeping usually helps when I have a migraine to get me to sleep.  Just not lately. There was a day last weekend or the weekend before where I did not sleep at all.  A few work days were I only had a couple hours of sleep.  And today... didn't sleep at all again but on a work day.  I was called in sick yesterday with a migraine and now again today with the same migraine that kept me up all night long.  And I don't get why I could not sleep at all with a sleeping pill.  Not even just a little.  Why is it now my brain is saying 'Too much pain to sleep' when before I could handle it?

Migraine Awareness Month Blogging Challenge #27: "In My Head and Heart"

Talk about who inspires you to keep trying and not give up, despite your Migraines.
There isn't just one.  There were three but then my brother move out and now there are two. 

My brother: When my brother was living with me and my spouse it was great.  He did not inspire me to not give up.  It was more like he wouldn't let me get into a migraine funk mood.  Me and him would sibling bicker... which is just fake bicker back and forth and joke around and be insanely silly.  And it would lighten my heart even on a bad day.  I think only a brother like that has that power.  I really missed that when he moved out.  But I'll tell you it really did help me out, and in ways he would be oblivious to.  Laughter is the best medicine after all.

My Mom:  My mom is there for me no matter what.  She is there for me to drive me to neuro appointments and ask me how they went.  She is there for me to pick me up when I fall down and then take me on a trip to get me back on my feet again.  She is there for me to remind me to take my vitamins and help me figure out which ones I should be taking.  And looking at things that might help me out.  And encouraging me to try new treatments. And suggesting ways to figure out how I can fix my work situation and alternatives.  She is a mom and she is an awesome mom.

Martin: My man.  He makes things easy for me would be the way to put it. He doesn't care if I work or I don't work... financially obviously I do, but any solution would work for him, as long as it works for me.  Money doesn't matter to him.  He does things to for me so that I don't have to do them because he knows I am in pain.  Simple things around the house that I know I need to get to but just can't and then he just does them without me saying anything.  He does all the grocery shopping and the cooking already.  So he does more than his fair share.  He could resent that.  He could make things very hard for me.  But he doesn't.  He makes it very easy.  And if I had to make hard choices with work, he would be fine with it.  Him being fine with that and be my steady rock makes me feel safe and comforted.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Migraine Awareness Month Blogging Challenge #24: "Dear Genie"

Put together a wish list for your life.
Another thinker. You do realize I have a wicked migraine, right?  Thinking is just not on the skill set today but I'll try.  Thinking ahead is a bit difficult to do when I'm stuck in a migraine but to tell you the truth I avoid it like the plague anyway because it depresses the hell out of me.  The realism of it all you know.  But I suppose wishful thinking is different.

Abracadabra I wish to be pain free forever!!!!  Yay!!!  And that there would be the only wish I would need.

But assuming that was impossible and we were aiming for realistic wishes...

a) I wish I could work from home and make sufficient income to meet my financial obligations without causing financial strain and stress.  I would love that income to be made writing... fiction and/or non-fiction... both preferably.  But realistically if could be all sorts of different types of work as long as I could be at home, in a controlled enviroment so that if I have a brutal migraine I can deal with it properly and I'm not constantly afflicted with all that damned Light there is Outside and Evil floursent light.  The flexibility of working from home just would be optimum.  Full time work right now just is torture (less so at my new office enviroment with my current manager mind you) and I feel that it is literally causing my migraine symptoms to go haywire no matter how they are treated because if I can't properly treat a migraine and rest, avoid trigger, hide in the dark and do what I need to do then whatever treatment I use is basically null and void.  And constantly being afflicted by triggers just makes existing migraines endure and persist longer than they ought to.  So they would be more bearable if I could control the conditions somewhat.  So ultimately i wish I could financially work from home or have some sort of partial disability leave and work from home or some sort of damn viable solution.

b) An effective preventative treatment would be great.  Again sometimes it is hard to say whether a preventative is working because I get stuck in bad bouts of migraines when I'm working full time and I think that if I were not that preventative might have had a fighting chance.  I've had the best success with Topamax but it may be causing partial seizures so that might be off my menu.  I've been through quite a few and some are off the list because of asthma.  I would want one to not only decrease migraine frequency and intensity but also help with migraine associated vertigo, prolonged visual auras and the perceptual distortions.  All the neurological things that make it diifuclt to function.  I've been told the best preventative treatment is 50% effective reduction in migraines... which would still leave me at the chronic level... but I still think as a wish list that is pretty damned better than daily because that is 15 migraine free days and that sounds freaking awesome to me.

c) It would be pretty cool to have some way to deal with the hormonal migraines in particular such that they do not go into status migraine mode.  I would like my neuro to consider options regarding this specifically since these migraines are crippling for me and cause the most missed work. My doc would like the new neuro to think about prescribing me toradol shots, which is what I usually get in the ER, to treat right away for the hormonal migraines to hopefully prevent them from getting out of control or keep the pain level down at least so they don't last longer than three days.  Since these migraines are the ones that caused the nerve damage in my hand, also have the most severe nausea, epsidoes of vertigo, sleep deprivation and mood swings I'd consider them the most dangous of my migraines to my health.

Thats it really.  Work from home and less migraines is a good wish list for me.  Told you I don't like long term goals and thinking ahead.  I'd say I'd like to publish a book, but I self publish so... I do that already.... so what I'd like to do is make money at it. lol.  But I'm working on my marketing methods so maybe I will get to that.  I don't honestly wish for much.  If my pain where managed I would be content with my life as it is... and if I were a world famous writer I would just be More content.  You know what I'm saying?   I'd also like to win the lottery but I don't need to, but it would be cool.  Allright, so magic gennie list... pain free forever, uber famous auther and win the lottery.  There. That would be my fantasy wish list. ha. Otherwise, I'll stick with working from home and some pain management.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Definately doctor time... nocturnal seizures again

Sorry I missed a few blogging days for the blog-a-thon.  Been in status migraine mode so... a bit brainless at the moment. 

Last night I had another one of those nocturnal seizures.  So I think that has been about four episodes now.  Only one really bad one.  But all with three similar characteristics and that bothers me... that they are all the same format.  All the same time of night as well.  Maybe I am getting more and am not aware of it.  I don't know.  But this is what I do know...

a) It begins with a strong tingling at the base of my head and the spreads up over my head to my forehead and gets more intense.  And I know instantly it is going to happen.  I remain conscious each time.

b) Every time my eyelids flutter rapidly.  Sometimes I get a migraine like aura.  The one time that was the longest episode occurred with a bright aura.

c) Every time either my toes and/or my fingers spasm... they sort of rhythmically twitch open and closed.  This last time was just my toes, but usually it is both, maybe it is just this last time I didn't notice because my hands were under me.

d) Every time I try to call out to my boyfriend by I can't speak... I can make a noise but can't form words.

When it lasts longer it affects my heart rate and then my breathing gets weird.  But none of the episodes last very long at all.  Some just seconds.

So I don't know what the hell it is but I do know that more than once is something I need to be concerned about and can't just ignore even if that is what I like to do.  So I need to make a doctors appointment right away.  I just don't know if he is going to believe me.  I mean it is weird that this is suddenly occurring.  Especially since I'm on anti-seizure meds.  Maybe it is a medication thing.  I sure the hell can't figure this one out.

Some migraine art and finding a outlet

I have said it before and I will say it again, I love migraine art. It is so intense and because of that you can feel the pain in the image. Obviously I can relate to it, so I like it, but also I think it perhaps brings awareness to others how much we suffer. Not that I don't think people cannot comprehend just that these sorts of things help. I also like migraine poetry for the same reason. Both of them are excellent mediums. Ones I cannot utilize for certain. I have often mentioned that we need an outlet for our more intense emotions. A way to work them out of our system in a healthy manner. It goes along with one of the most important coping mechanisms: Distraction: hobbies and things we do to activily distract ourselves from pain. And this would be number two: outlet: things we do to work through the emotional toll of chronic pain. Creative arts are excellent outlets. I write a great deal. But my novel writing is not an outlet, it is a hobby so it would be under the distract category. My non-fiction is about FM and migraines most of the time but often not on an emotional level so it does not work through the emotions, it just breaks down the experience in a rational way, which is actually a way I like to cope with things... I like to break them down and understand them. I actually think for me blogging is more of an outlet than anything. I can be real here. I can say real things without worrying that I am worrying others. I can be real and know people will understand what I am going through. I can work through my emotions, get them out, feel them, understand them and it makes me feel better. However you do it, even a personal diary, a little venting and ranting and then analyzing is good. We need to get all that out so we can carry on and it doesn't weight us down like lead. That being said, check out this awesome migraine art! I found it on a Facebook group where they just looked through google images so no idea about artists but I'm sure 3 and 4 are featured in Migraine Expressions... the book I wrote an essay in and can be seen on my left sidebar there (lots of awesome art and poetry in there).

Migraine Awareness Month Blogging Challenge #21: "Shaking in My Boot."

What's your biggest Migraine related fear? How do you cope with it?
That the pain will never end and it will kill me.  Or more likely it will cause me to kill myself, but maybe it will be a heartattack, or a stroke or a seizure.  But the never ending pain scares me because that makes me fear I will get to that mental place where I will want to kill myself again.

Coping with it is difficult because every day I cope with all this pain through work and unsympathetic doctors and surviving.  How I don't know.  I manage.  Then comes along a five to seven day migrain hell where the pain does not stop, I can't sleep  and I'm desperate,  At those times I wish I din't have to work, but I know my doctor, neuro and insurance companies have given me no options.  I wish I had some options, but I don't know how to achieve them.  I'm desperate for relelief but know the ER will not provide it.  I don't know how I'm going to manage to function for the next few days at work let alone decades.  That is were coping disinigrates and where your ability to reason and think clearly shut off.  That is why I'm afraid of it. 
I hope my doctors will come up with a better treatmet in freaking October when I see the new neuro.  Until then I'll make do.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Migraine Awareness Month Blogging Challenge #22: "The Game Changer."

Tell us about a time your plans changed due either to an unexpected Migraine or an unexpected Migraine-free experience
Tell us about a time your plans changed due either to an unexpected Migraine or an unexpected Migraine-free experience
There was this time I had an unexpected migraine free day and I thought 'huh, I'll go into work today!' Kidding! I go into work all the time with migraines but a migraine free day makes it more clear for sure.

Anyhoo... this is a teeny bit hard to answer because, well, I don't plan because of the whole chronic pain thing but I would make a spontaneous plan to do something if I had a migraine free day... but that is so freaking rare that it doesn't really happen on a day off. Or at least I don't recall the last time I have had a migraine free day on a day off. This past Monday and Tuesday were awesome pain days, as I didn't get a migraine until the evening and it was mild. But then Wednesday was a horrific migraine that caused me to miss work as if to mock those very nice pain days and today started off very unpleasant but my triptan knocked it down to bearable. So by the the time the weekend rolls around I'm going to be tired even if I manage to be free from pain for half a day my plan is to recover from the week.

Even if I don't have a migraine I still have pain and fatigue. Fibromyalgia is even more chronic that my chronic migraines in that sense I guess since it doesn't even have the potential of taking a break. So that essentially means when I'm having a good pain day, whether that be with FM or migraine and I feel like I have enough energy then I will make a mini list of things to do. Some of them things I want to do, like writing (some fiction and then some non-fiction) and some reading (at least an hour of down time for reading, likely more if it is a bad pain day because obviously that is all I can get done) or going book shopping (awesome!) or whatever... and then some things I should do like laundry, and housework and whatever. And then I feel like I got something done and I feel emotionally and mentally satisfied. Good pain days mean that my list can include something that requires leaving the house. Bad pain days mean I'm all hermit style. But I don't plan. It's more like I wake up on a day off and assess how I feel and then decide from there.

That being said the few times I make plans to say go on holidays I stick to them because they involve other people so it doesn't matter how much pain I'm in... I'll do it because I want to make others happy. But if it is an informal plan to go to a family gathering such as a BBQ then 90% of the time I often end up not going because it requires some travel and I'm in a boatload of pain and I know the pain will get worse... which sucks because I always want to go. The last time being my uncles birthday party and I was really not well, otherwise I would have damn well forced myself to go but it was day 1 of a brutal hormonal migraine (need I say more?). That really bothered me because I had not seen him in a long time and I really wanted to be there for his birthday since he is not around often and obviously I'm not out and about often. Plus I don't socialize often so it would have been nice to visit with family. I guess that right there is an example. Huh. I guess I got my brain thinking. Come to think of it I also have not been able to visit with my brother Dom who has been in the hospital undergoing cancer treatment. After work my migraines are very acute, I'm drained and obviously can't get to the hospital in the city in time so it leaves the weekend. Because of FM I get sick a lot and I was not going to get my brother sick with anything I had and then with this damned vertigo and constant nausea I was not sure if I was sick or sick sick for while. I got one visit in, but not enough to be there for him, my other brother and my step mother. So I've been waiting for him to get well enough and strong enough to be home and hopefully go visit more often there.... but that there is planning. So while I plan to I won't say anything because then I won't disappoint anyone.

Which is why I hate planning. Breaking plans is like breaking promises. It is better to be spontaneous and random than to not do something you say you are going to. I guess what I'm trying to say is that I really attempt to not plan anything... but obviously others do plan events which I do try to attend and often fail. I have over time lost a great deal of friends because of this... well, all of them, because I suck at being able to give anything to them. And I try my damndest to be there in any way, even if it is just my presence or my words in a freaking email to my family, because I am not capable of being there as a full presence I wish I could be. Damn that makes me sad.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

raine Awareness Month Blogging Challenge #20: "Run, Forrest, Run!"

Describe the approach you think is best when it's time to move on to a new doctor.
I don't really have an 'approach' I know to when I've had enough.  It a 'It's not me, it's you' sort of situation, but I don't say that.  I say it with actions, as in, the action of 'these boots are made for walking'.  I mean, let's face it most doctors suck with chronic pain patients.  They just do.  I'm just telling it like it is, from a gal with decades of fibro experience of doctors actually just not treating that condition.  I used to think they must just not like having patients that are chonicly ill because they were so reluctant to treat me at all just because the condition has no cure, but obviously that isn't true because that is a lot of conditions... it must be more because of the pain and suffering that they do not actually want to treat due to being leery of precribing painkillers or lack of training on what to do with such patients.  Who knows?  Either way, most of them suck at it.  But they are awesome if you have a head cold, asthma or hypothyrodism.  From my experience anyway. Actually from my experience, awesome for any condition except chronic pain.  At least they try with migraines.  So kudos for that, but when their trying becomes harmful and they stop listening... well, no point griping about it because you can talk till you're blue in the face.  Just ditch.  See ya later sucker.  You think they'd want to hold onto us sickly ones... we are consistent afterall.  Month after month I have to go make a doctors appointment just for prescriptions. 

Anyway, it's hard to find a new doctor around here.  There is a severe shortage.  So while I do my due dilligence of asking for referals and checking online to see how they rate... generally I actually have to phone clinics to see if any of them are actually taking new patients first and then personally interview any of the doctors who are. 


1) Chat em up: always chat up a potential new doctor to get a feel for his or her bedside manners because you don't want to be dealing with an arsehat.  I'm just saying sometimes they pretend to be listening but then cut you off and you realize they haven't heard a damn thing you were saying.  You don't need one of them.  Or one of the ones that has no damn sympathy for suffering at all.  Why the hell they'd become a doctor in the first place if they can blatently ignore your suffering?  You want to explain your medical conditions and have them actually pay attention... none of that ten minute cut off crap.  Get a feel for what sort of personality you are dealing with.

2) Interview:  Explain your migraine situation.  The type, frequency, symtpoms.  The whole thing.  And ask them how they would proceed to treat them.  Just to see what they say.  I like to do this to see what their knowledge base is.  Sometimes you will be real surprised on what they will say.  Sometimes they don't even suggest triptans.  Some will go straight for the easy answer, as in the most expensive, newest preventive on the market, but that is expected I supose because that is what they are taught to say.  But if you then start explaining what preventive history you have had, what has not worked, what you are on now and then ask their opininion and they flounder maybe they will not work out... or maybe they will have some useful suggestions, or maybe they will concur with your treatment and suggest a new neuro.  Whatever, as long as you are comfortable with the responses and knowlesge base.  And not just with migraines... if you are like me you might have other comorbid conditions and those conditions WILL be his primary concern and they will affect your migraine treatment one way or the other so you HAVE to be confident in his or her ability to treat them and that they understand how the conditions affect each other.

3) Provide Info: Your doc can't act on what he does not know.  Transfer your file obviously, but also tell him your medications.  Provide him with a list of previous preventatives, why they did not work and any medications you are allergic to or had adverse reactions to.  let him know treatments you tried.  All your medical history and such.  Keep a migraine diary so you can keep track of changes to your migraine frequency and intensity to keep him up to date.

It's diffiuclt to find a good doctor so when you do hold onto them for sure.  And be honest with them because if you are honest then it makes their job easier.  I find this to be difficult.  I like my doctor now.  He seems flippant at times and brief but he does listen when it is important and it does treat each concern I bring up.  He doesn't pretend to know everything.  He is refering me to a new neuro which is great.  But the honesty thing is difficult because I have had so many bad doctors in the past who have not treated my fibro that Ive become so very stoic about symptoms.  I wait and wait figuring 'they will go away on their own and if they don't then I'll mention it' or 'if it gets worse then I'll mention it'.  Half the time forgetting about it until it becomes a big deal.  And with pain I feel like I need to hide it.  Like it is my job to hide it from everyone.  So I have a hard time with honestly.  But if your doctor does not know the pain is really getting to you then he can't help.  Trust me one this one.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Migraine Awareness Month Blogging Challenge #19: "The Match Game"

Describe your perfect doctor to treat your Migraines.
Probably one who has actually had a migraine.  Takes one to know one.  Although I suppose that would just be a bonus.  It is difficult to describe a perfect doctor because they don't exist.  They are just as fallible as everybody else.  I suppose though certain traits would be nice...

1) Persistence: I hate it when doctors or neurologists give up on me because they run out of ideas.  It's called a brain.  Use it.  How did you get through med school anyway? Because I recall when I was in university a little something called research.  If you run out of idea, something I find hard to believe because via the power of Google, my own research skills, I have not and the list of preventatives is Huge and treatments I have not tried that are I admit extreme are out there... anyway, if you run out, then research about.  Look at your patient, their particular symptoms and look into it.  Call a friend if you need to.  But passing the buck so that I have to start all over again really pisses me off.  There is more than one preventative I've been on more than one time because of this... because the next dude down the line for whatever reason didn't believe me when I said been there done that and it didn't work.  It's just idiotic.  So some damned persistence would be nice.

2)  Respect and knowledge: Don't treat me like an idiot. I don't respond well to that. I fully expect a doctor to know more about migraines than I do... or I should say I expect I neuro to, because doctors just don't.  After a bit a gal just picks up a lot, but there is a a great deal I do not know and I expect my neuro to know more.  But that being said I expect them to share that knowledge with me.  When they tell me something I don't want them to say like my last neuro did 'That is migraine associated vertigo' and then tell me that because my migraines are chronic I will get it whenever, like my prolonged aura because my brain is at a constant heightened state and that is the way it is.  So... well.  Why?  And what is migraine associated vertigo exactly?  Well I had to figure that out myself and it turns out it is a great deal more fricken complicated than he made it out to be.  He didn't offer an explanation or a treatment or what I could expect or even all the associated symptoms involved with MAV.  Same with the nerve damage in my hand.  He said it occurred from a status migraine. No explanation as to how that happened because I know that's not normal, or whether it could happen again, or whether the nerve damage could progress.  Nor did he do any tests to actually confirm that was in fact the case.  I want them to know what they are talking about, do their do diligence and explain what is going on with my body, what I can expect and what the game plan is.

3) Bedside manners: Don't be an arsehat.  Enough said.

4) Think outside of the box: Maybe the answer isn't just toss a bunch of pills at me.  Yes, that is part of the answer, but there are lots of things to try.  I just don't know all of them.  I try some things and it has bad results and I would like to work with a doctor who can work with me... give me ideas, send me to things like biofeedback or pain clinics or whatever to help me manage the pain that isn't being controlled by the drugs.  Because I have to survive this somehow and if the meds don't work I'd like a doctor help me survive and not just let me flail along.

5) An effing genius with an IQ of 800 who is on the cusp of curing migraines... well, I can wish, right? :)

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Migraine Awareness Month #18: "The Price Is Right."

What one thing would you do for the Migraine community if money were no issue.

What wouldn't I do if money were no issue.  I think of all the money that could be put into research alone that would make a huge difference... or at least would make me feel better.  Because then I would feel like I was giving us some hope and you can't put a price on hope.  But then if money were not an issue then I might then fund migraine specialist clinics.  I know in my area, as in my province there is one headache specialist clinic that I am still on a waiting list for... so I know there could definitely be more places dedicated to treating migraines.  I would be thinking a broad approach as well.  There is a certain point where doctors and neurologists just can't help anymore but we still need to learn to manage our pain.  No one teaches us any pain management techniques though.  They just expect us to figure it out.  So a place that is designed to have neurologists as well as pain specialists, nutritionists, alternative therapists and physiotherapists helping together to help someone.  Things like biofeedback and so forth.  I honestly have no idea what sort of things they do at pain clinics because I've never been to one... ergo the issue.  Plus you have to remember some of us have severe neurological symptoms with vertigo and other auras that could also be dealt with in the broad spectrum approach.  I mean if we cannot cure migraines at this point, and some of us are left with chronic migraines and left in situations where we are in a great deal of pain and just expected to deal having a place like that designed to assist us in developing the proper coping strategies to help manage the pain the doctors and neurologists can't be bothered to deal with would be life saving.  I would throw money into a program like that.  Or at least one designed to get those people to the right people or into the right programs that would help with those things.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

The damned estrogen/hormonal trigger

Headache and migraine news posted about a study done looking at the roll between estrogen and migraines.  They found some obvious results:

The study also found that menstrual migraines are more resistant to treatment, last longer and seem to be more debilitating than attacks at other times of the month. Estrogen seems to be a major factor, though not the only factor. It’s interaction with other functions in the body may explain part of what’s going on.
 Yes, I concur.  Definately more reistent to treatment, as in they have never responded to any treatment that other migraines have.  If a preventative works for me, awesome, but it doesn't work on them, ever.  And yes, they last longer, as in they start and they do not end for DAYS.  And they are definately more debilitating because of the whole lasting longer, the difculty treating and then there is the fact they are so damned acute.  And estrogen definately isn't the only factor, other trigger compound in there... like lack of sleep.  Then there is just the extra stress the body is under that might aggravate the situation, or at least it does with FM.

I hate em.  Nothing more to say about it.

Migraine Awareness Month #17: "Father Knows Best."

Some understand Migraines, some don't. It's Father's Day. Write a letter to your father or the man closest to you, and talk to him about your Migraines.


Hey Dad,

How goes it?  I don't need to explain pain to you.  We both get what chronic pain means.  By the way thanks for sharing that part of the gene pool!  But they say your children have a one and four chance of get fibromyalgia so... if we take that literally then my brothers are safe. Ha. Anyway, so you get pain and you know my migraines much like FM is chronic.  I would say the difference for me personally is that my migraines are far more crippling pain wise than fibromyalgia is.  I mean I know for a fact FM is more severe pain wise for you than it is for me.  I have had severe flare ups that have been debilitating but my base line pain is quite tolerable due to the Lyrica likely.  I know that is not the case for you.  And for me the migraine pain is far more severe and debilitating.  It fluctuates from moderate 6-7 to acute 7-8 to severe 9-10 from day to day.  Currently they are daily, often starting in the afternoon but sometimes starting in the morning.  Once a month I get a status migraine that is one long bitch of a migraine that last from three to six days acute to severe pain.  That's the pain, which I know you get.  It is a bit of a different type of pain though.  I once had an FM flare up in my wrists and feet that made it difficult to walk (i had to sort of shuffle and that's why Martin came up with the nickname shuffles by the way) and my wrists made it difficult to write and I couldn't put any pressure on them at all.  But as bad as the pain was it was isolated and it just altered how I moved and got things done.  Migraine pain you cannot alter how you move to avoid it, hell just moving your head is a Bad Idea sometimes.  It is difficult to ignore and to think through.  Maybe because it is in the head.  I know know but I find it the most distracting of all pains... and I can ignore a lot of pains.

But its not all about the pain and I think you get that as well because FM is not about the pain either, even though doctors are always so focused on it.  For example IBS comes with FM which I have and migraines likewise come with nausea and Diarrhea, or they can, and they do with me.  And the infamous fibro fog that causes problems with concentration, short term memory and word confusion.  before a migraine during  the aura phase I get them all.  And problems speaking words, spelling words, saying things in the wrong tense, backwards, forgetting words or their meaning.  I forget what I'm saying while I'm saying it.  FM has many symptoms and migraines have many neurological away symptoms.  I get hearing loss, visual snow (prolonged aura that doesn't go away) other visual auras of blotchy lights, warpy blue black lights.  I get numbness and tingling.  I get vertigo, dizziness, balance problems, confusion and these are all from 'migraine associated vertigo' which is also something that occurs whether I have a migraine or not, due to the fact they are so frequent.  Makes me feel like the ground is suddenly falling beneath my feet, or things are moving when they are not, or my head is spinning or the world looks all warpy and shifty.  Causes me a lot of anxiety sometimes.  Sometimes I get feelings of surrealness.  Or confusion.  Or unrealness.  Or I zone out and I can't understand what I'm doing.  I've lost the ability to tell right from left for some reason.  I've passed out a few times. All these things and more I'm likely forgetting make it difficult to think straight.  Make it difficult to get through work.  I have a hard time at work, which you know.  You of all people understand why I tried to kill myself, but I have to find a way to work through the torture.  If you have any pointers on that side let me know.

I think my migraines are getting to be dangerous.  So I think maybe they will handle me before long if things don't get sorted. I think this because first it was the angina and one time that was worse that that but I didn't go the the ER (but I'm still alive so don't call me foolish).  Then the vertigo getting consistently worse until now the MAV is just whenever according to the neuro.  Then the nerve damage on my right hand and some on the left from a status migraine... just because.  And the times I passed out.  And possibly a little seizure one night (not verified, but nothing like the one you had if this was anything it would have been a partial seizure).  So... I think my brain's electrical activity is like preparing for a super storm.  The storm of the century.  The migraine of the century I expect.  Then like a computer my brain will completely crash and they will need to reboot me.  I wonder... can we make a brain recover drive?  That would be super helpful.

Anyway, that's the deal with migraines.  Pain and a lot of other crap.  Just like FM.  But we're doing good.  We are alive.  We are surviving.  And that there is a good thing.

See ya later.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Migraine Awareness Month #16: "Lead, follow, or get our of the way."

Migraine Awareness Month Blogging Challenge #16: "Lead, follow, or get out of the way."

Which role fits you and why?

I'm a bit late on this one due to having to get a new computer and then spending a day on set up.

I can say I have never been much of a follower.  Sort of the whole antisocial antiauthority personality of mine doesn't like to follow.  I like to collaborate certainly, but definitely not a follower.  But not a leader either.  Because really I have never been a team player or much for group work per sa, so I'm not about to lead anyone to push boundaries or anything.  I more of a solo player.  In the background sort of speak, unless someone asks for my assistance with a project and then I'm game.  Especially if it tweaks my interest and then I get all into it.  Mostly I do my own thing.  I mean I have a blog... not run a forum.  I write articles freelance which is a solo gig.  I do things like this to throw my voice in the mix and I do as much as I can to promote awareness.  I'm a writer.  Generally that means I'm not a follower or a leader.  I'm a hermit plunking away at a keyboard in the wee hours of the night.  Frankly, I'm lucky if I notice or interact with people.  If I didn't work then I likely wouldn't.  Which is why I like having a blog and going to forums because I can be involved in communities and get support.  But when it comes to advocating awareness I'm neither a leader nor a follower, but certainly a contributor.  Or at least I try to be.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Migraine Awareness Month #15: Free Blog!

Blog an a Migraine related topic of your choice.
Okay, I'm going to go there.  To that dark place.  Because it was what I was thinking about.  I was thinking about survival.  In particular how long it has been since I survived and could have died.  I looked back on my blog... which is in fact like a migraine diary, rants and all, and it was August 12, 2010 that I tried to kill myself.

The reason I was thinking about my survival was twofold.  One, because of the high suicide rate among people who suffer with chronic migraines that I think is hugely ignored by medical professionals.  In fact, I think they ignore our pain to a high degree and at times treat us like drug seekers or minimize our suffering... and they most definitely do not take into account the huge emotional toll there is to that pain, especially when we come to them in extreme pain in desperate need for help and they turn us away.  Because studies have shown people with chronic migraines often are not depressed when they kill themselves, they kill themselves because of the pain... which just shows the lack of pain management.  Not to say depression does not come into effect and have a roll now and again.  But when the pain peaks, and we can't sleep and we have had a migraine for days and we get in that frame of mind where we can't even contemplate another day let alone a lifetime battling them with no pain control we don't think rationally under that amount of pain and sleep deprivation.  I remember how my doctor and neuro treated me after and it shocked me to my core.  They were not in the least bit surprised, because honestly how could they be, and they did little about it as well... just carry on as usual.  Leaving me to try and figure out how to piece the fragments together when I was thrust back to work barely ready to do anything still feeling numb from the trauma of it all.  It should be shocking.  It should say this person would rather die that live one more moment with this level of pain so maybe we should do something to help her with the pain... or maybe she shouldn't be working.  I was real disillusioned by that.  The shrink I had to see said I should go on full time disability and I told her it wasn't my choice it was the doctors and the insurance company, I didn't get a vote and was angry at her for thinking it was in my control.  And I was proven right.  In all honesty how the situation was handled after my survival did put me into a bit of a depression when I realized nothing was ever going to change and that none of these people would ever help me.  So it took some time to recover from my survival and how they handled it.

The second reason I was thinking about my survival was because I stopped by my old work office and chatting with old staff members.  It made me think about my new office I have been transferred to who has a manager willing to help out when I am sick and unable to come in.  Who doesn't have a problem if I miss three days a month.  Who us supportive and understanding.  I don't have that heavy burden of guilt for being sick, or that anxiety for going to work the next day after knowing it will be a back day, or fearing the 'chats' about my missed days and how I'm failing everyone, or the threats that I can't do anything about because I can't stop being sick and every time I try coming in all the time no matter what things get significantly worse and I end up on a leave of absence or ... I try and kill myself.  The environment is profoundly different.  One environment over the span of seven years nearly killed me.  It wasn't the one time, the one threat... it was over time, until my confidence was gone, until I blamed myself for being ill, until I felt guilty all the time.  Beat me to the ground until it was inevitable I was break.  I guess as far as management skills go you shouldn't treat someone with acute chronic pain like that because that is something that might happen.  The other environment it didn't take long before there was this feeling of profound relief that it wasn't going to be like that... that there were accommodation options available and that if I was sick there would be no looming consequences.  So I think it is vital that we pay attention to our work environment.  I mean I thought every other part of my environment was great, except that and I blamed myself mostly.  I just tried to be better, tried to power through the pain for my employer so she would be happy.  Instead of acknowledging she should have been the one accommodating my illness just a little and not making me feel guilty about being ill, something I have no control over.  Her efforts cause me to force myself to come to work and power through, which made things a lot worse and in effect cause more than one of my leaves of absence... so that does not work.  Plus she causes way more stress.  So if you have a boss like that you might want to realize that while it is not bad in the beginning over time it can get bad.  It goes from guilt trips, to vague threats, to demotions, to actual threats.  And each time part of you breaks down because you know you cannot do what they want, physically you can't.

My message is watch out for such employers... they are killer.  Literally.  If you have a good one, you are lucky.  Personally I'm tired and I wish I could aim for disability.  Or telecommute work that would pay decently.  I like my new office and manager, but I have come to the conclusion I am not capable of sustaining full time work with my brain compromised, missing too much work and frequent short term leaves.  I need to find what I am capable of and stop pretending this will work.

The point is I did survive.  And I often reflect back on that time.  My frame of mind.  How easy it is to go from thought to action when engulfed in a status migraine.  I think every year I'm going to remember that day and look back to it, just to remind myself where I was and that I survived when I so easily could not have.  Like many of us done.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

raine Awareness Month Blogging Challenge #14: "Live Long and Prosper"

Come up with a short, simple phrase or sentence that could be used when saying "Hello" or "Good-bye" to express your wishes for fellow Migraineurs.

'Hey, Have a good pain day'

'Hey, Isn't it a sparkly day out today or what?'

'Hey, Have a good brain day.'

'Hey, Isn't it a beautiful cloudy, nice and cool day today?'

"Well, have a good one, and your brain doesn't turn to pudding.'

"Well, have a good one, and don't try and catch the little sparkles, they are not real... trust me, I tried."

"Well, have a good one, and let's hope we continue to speak English for the rest of the day rather than garbly-gook."

"Survived another one.  Victory is ours!" *fist bump*

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Migraine Awareness Month Blogging Challenge #11: "Say what?!"

What's the most ridiculous thing ever said to you about Migraines, who said it, and under what circumstances?
Gee.  That is a long list but for some reason my brain is stalling on the details.  It's like one of those job interview questions where you have plenty of answers but then when it comes to it not one example comes to mind because at that precise moment you have a migraine and the potential employer has open blinds behind him and the light glaring and the horizontal blind lines are warping and moving causing your brain to just faulter.  Like that.

I do recall an ER incident that stands out because it was one of those incidents where you realize you know more than most doctors about migraines... and that's not a bloody good thing.  I went in for a statu migraine fully expecting to not get proper treatment as per usual but as per usual I was desperate... likely on day five or six by that point.  Hormonal migraine triggers cause a spike in migraine activity for me, causing a given three day acute migraine which then when I go to work and have all that fun and then don't get enough sleep, and repeat, tend to cause them to... linger.  Or sometimes to just go off the charts in pain, which as I recall this one was, so I was having a difficult time conversing.  So this young fellow comes in and asks me what symptoms I'm having and so I go through them and one of them happened to be hearing loss on the left side... it had just gone out for the last day or so and been replaced with a nice high pitched squeal and every.  And a sort of numb tingling down that side of the face.  And other such things.  And he asked me 'and is that a normal migraine aura then?'  I just sort of looked at him for a long stunned moment and wanted to yell at him to go Google it or go get his effing text book, but obviously hearing loss is a wierd one so I said not normal per sa but it happens occasionally.  It just took me off guard I guess because I just expect them to know.  But you know what was nice about that young fellow is that he didn't have all the hang ups all the other doctors do about pain killers and actually gave me something to manage the pain (percocet I believe) and I was able to go home and actually sleep which did me a world of good.

Which brings to mind another doctor story... I was getting daily migraines when I first left school and entered the full time work force because I chose a job that required shift work, which unfortunately caused my fibro poor sleep cycle to become even worse and I guess made me sleep deprived.  It actually was what made my migraines significanly worse, they were chronic prior, but not daily... but I was not on a preventative.  So my doctor was stuggling to find a preventative and damned fast... and insisted I find a new job and damned fast.  Anyway, while we were trying to figure things out I was obviously in a significant amount of pain and at the time my migraines were always acute (due to no preventative) and heavy on the nausea and vomiting due to them being so damned sudden.  So I was getting sick and fast.  When the pain became an issue I made an appointment but my doc was not in and I saw some chick instead. I was just in a lot of pain because it was my first status migraine while working full time... and it wasn't stopping.  My fibromyalgia had been a concern with my return to work as well, so pain was just an issue period.  And this endless migraine was the straw that broke the camels back.  I guess if at the time I knew more about migrianes I would have gone to the ER (and been dispointed and disillusioned, but still...) but I didn't think people went to the ER for migraines. She told me there was nothing I could do other than take a triptan, which I already had and if that did not work she wasn't going to give me a pain killer (like I had asked?) and that what I should do if it is so 'bad' is 'take and advil and have a bath'.  It actually made me tear up as I recall... I would never cry in front of such a person, but yeah, I was in that much pain that her response made me tear up when I realized she was not going to help at all.  It is doctors like that that cause desperate and emotionally pain strained people to go kill themselves after... because that is a horrible thing to say to someone who is in that much pain and is asking for help.  I don't think I will ever forget that.  Actually I'm really, really glad I didn't see her a decade later when I might have done just that after seeing her.  Pain makes us do crazy things after awhile and sometimes these doctors are cynical jackasses.  I was just a kid... not some crack head.  And I'd had fibro for Years and managed not to become a crack head so that is rather insulting to me and every other chronic pain person out there that we are automatically grabbing for the narcotics.

Okay no more doctor stories.  They are making me cranky.

How bout this?  Someone once told me she heard only really smart people get lots of migraines.  I told her 'Yes, that is very, very true.'  No, I didn't.  But I am really, really smart... when I don't have a migraine.  So once a year I am really, really smart.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Migraine Awareness Month Blogging Challenge #9: "Day Dream Believer."

Describe your dream day - without a Migraine to hold you back.

Not sure I can really.  I still have the fibro to think about.  And to imagine a day without pain is like someone who has never experienced pain imagining chronic pain... I sort of forget what it feels like.  I suppose without the migraine pain my dream day would be full of clarity which would be nice.  Focus.  The ability to concentrate.  That feeling of just being able to exist moment to moment without being bogged down with that brain pain that makes you get through the day by inches.  I could walk outside without wincing... hell, maybe I could actually do something outside... but that sort of stretches my imagination skills right there.  But I could definitely think straight and I have lots of things I could just get done if I could think straight.  Imagine all the articles I could write... and without typos.  What a hermit thing to think of.  But I really miss clarity.  When I first was hit with the reality of fibromyalgia I was like 'at least I still have my mind... as long as I work around the fibro fog', but with chronic migraines, well, you can't work around that much pain and all those effed up neurological symptoms.  It isn't humanly possible, even if people expect you to work full time you know you're brain dead and spend most of the time trying not to make mistakes or correcting mistakes or feeling like crap for the mistakes that inevitably slip through the gaps.  Your brain is just constantly misfiring in strange and unusual ways that is impossible to keep up with.  For one day, without the pain and without the strange symptoms and just being able to think normally, that would be pretty awesome.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Migraine Awareness Month Blogging Challenge #8: "Let there be light."

Most Migraineurs have issues with light sensitivity. What do you do to cope with it?
This is a big one for me.  Maybe because with fibromyalgia I also have light sensitivity, but either way I am very photophobic which is just made worse with a migraine.  I also have a prolonged migraine aura of visual snow... which looks like a billion sparkles of light dancing in the sky, but when you look at things makes them all warpy.  So I never, ever leave the house without sunglasses.  I own several pairs of varying strengths and tints depending on the time of day and whether it is sunny or cloudy, but I always have a pair on.  It is both too painful not to wear them and also too sparkly.  For indoors at work I wear pink tinted glasses as that tint seems to decrease the intensity of fluorescent lights by contrasting against the blue spectrum... and I have mentioned on here those specs developed with an orange based tint that might even be better but I have not tried that myself.  I got the pink tint after reading a study on photosenitivity and it really does help... so there is definitely something to trying different tints out.  I just recently tried an orange tint on sunglasses but find they are not quite dark enough... they provide an interesting amount of clarity which I like, given they do reduce the pain associated with photosensitivity but the shade is not dark enough to reduce the visibility of the aura sparkles which is a bit of an issue for me.

I also like hats.  And I often wear hats with sunglasses.  People tend to give me funny looks when I do.  That is people over a certain age.  Suspcious looks.  Like I'm a shifty character.  Or stoned.

Unfortunately for my common-law spouse I also confront light sensitivity by living in almost complete darkness.  My house is very gloomy indeed.  Blackout curtains in all the rooms.  The bedroom has closed blinds, navy curtains over top which are closed and then pinned to the wall to prevent any light leakage.  The living room has wooden blinds, also closed and long closed curtains.  The only place I permit light is the kitchen and that is because he insisted and so I avoid it mostly.  All the lights are the low wattage sort and indirect lighting is what I like

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Migraine Awareness Month Blogging Challenge #7: List topper.

There are lots of myths and misconceptions about Migraine. Which one tops your list as the biggest and most common? What can we do to get the truth out there?
I think the one that bothers me the most is the assumption people have that migraines cannot be chronic or last days.  People do not see migraines as a disease.  They see them as a headache, which right there is wrong because the headache is but one possible symptom of a migraine.  People have this idea that a migraine has to have a visual aura, nausea and a headache and that it does not last longer than a day.  And that for some reason things like 'migraine strength advil' will do the trick.  Well, I do often get a visual aura (a prolonged visual aura actually) and sometimes I get nasty nausea and 99% of the time I get the headache (but have had a few silent migraines in my time).  Advil doesn't cut it unfortunately and yes those commercials annoy the hell out of me because I am afraid of the light.  But I do get chronic migraines and they are a disease.  And it is not some rare fluke of nature that this is the case.  Other people also get chronic migraines.  And no, we are not to blame for this, so stop implying it is something I'm doing or not doing.  That really pisses me off.  Anyway I explain to people the various reasons research has suggested why migraines might go from episodic to chronic.  I explain that it is by no means rare.  And I also explain all the varied neurological symptoms associated with the aura phase of the migraine as well as the actual migraine itself to show it is not all about the pain or the nausea.... there can be a lot more factors that are debilitating.  I also point out that it is a serious matter when migraines persist for longer than three days... even though I ignore it all too often because I have to go to work rather than go to the ER, and the ER doesn't provide the service I would need anyway so I don't often bother... that doesn't mean it isn't a dangerous migraine state to be in.  I should know given my suicide attempt during a long status migraine and then more recently my nerve damage in my hands.  Not a laughing matter.  And it isn't a laughing matter when someone has a stroke from a migraine either.  So it isn't just a damned headache.

I think we can bring awareness with every conversation we have with people.  Sometimes people just don't get it so they say idiotic things and we just have to set them right.  Usually when I inform people of reality of my existence they get it a little more.  Sometimes they are shocked by the reality of it, but in the end people do grasp the concept of pain.  If you say you are always in pain, no matter what else, at least they can grasp that part... they just might not quite get all the weird warpy fun house neurological stuff, but then who would unless they actually experienced their brain playing tricks on them?  Nevertheless, when I have to the point conversations with people about migraines in the end they grasp migraines are complex entities.  Because trust me, I have a lot of weird symptoms.  So if they are chatting with me it could be about vertigo, to hearing loss, to prolonged visual snow, to passing out, to nerve damage, to horrific ER experiences, AIWS... the list goes on.  And if they catch me pre-migraine... I may be hypomanic mode and super chatty and then I may, well, over share and they may learn a whole lot about migraines.  Or I may be pre-migraine and brain dead and be unable to form a sentence or complete words or using the wrong words and that rather explains a lot right there.  I'm a freaking walking awareness campaign.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Migraine Awareness Month Blogging Challenge #6: "Name That Tune!"

Choose a theme song for Migraine disease or your headache disorder.
This song always comes to mind when I think of being chronicly ill and its all in the title really.

This song is awesome. A sad happy song. Reminds me of my own pain but also of the burdan there is on my common law spouse of 15 years. 'lights will guide you home... and I will try to fix you'... not that I can be fixed, but he sure is there for me no matter what I need.
And then this song for some reason makes me feel good.  I have no idea if the 'dog days are over' yet but I do know I have survived this much so I listen to this and feel like maybe I have had some victory and conquered some ground and maybe it will get better.... now the video is a little nutty.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Migraine Awareness Month Blogging Challenge #5: "Do That To Me One More Time."

What comfort measure do you find helps you enough during a Migraine that you go back to it again and again, and how do you use it?
I scream a lot inside my head.  Or is that out loud?  Either way.  Cathartic.  Okay, I'm kidding.  Or am I?  One thing I do is joke around a lot so I can laugh and deflect the pain away but I don't know if I exactly take comfort in that or if that is a sort of defense mechanism.  Actually, I think it is a defense mechanism.  Laughing or crying.  And I think customers prefer laughing.

When I think 'comfort' though I think of coping mechanism and not necessarily a trick of treatment I may use.  Because I use a lot of little tricks that may or may not work on a particular migraine.  But the most comfort I get from coping with chronic migraines comes from the ways I distract myself from pain and the best way to distract myself from pain is to absorb myself into something I find interesting and am passionate about.  For me that is writing, whether that is fiction or non-fiction.  Even if it is writing about pain, which is rather ironic that writing about pain is distracting me from pain and I find that comforting, but whatever.  Mostly fiction is what I find the most absorbing and distracting, whereas freelance the most intellectually stimulating.  They actually say studies have shown that when your mind is focusing on something there are chemicals released that help block pain... which makes sense because when we are really focused on other things we do feel less pain, sure it is harder to focus and concentrate but I can damn well guarantee if you are sitting around, alone just thinking about how much pain you are in now, have been in the past and will be in the future... it will not put you in a good mental place.  I should know, because that is the mental place I get into every fricken time I get a status migraine and I have wicked insomnia and there I am awake by myself just thinking and thinking is bad.  Distraction is good.  So I like to direct my mind into many, many different areas.  One of my best coping skills in fact.  If the pain is at the level where I can even be somewhat coherent that is what I turn to.... even if it does somewhat cause a lot of spelling errors and occasional blog rants.  If the pain is off the Richter scales then I just read, because oddly enough I can read no matter how much pain I am in, which some people do not get... but again, distraction... I need something to focus on.

 National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

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