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Showing posts from September, 2012

Status migraine surprise!

Well day three of an acute migraine and it isn't a hormonally triggered one. Yay. Not fun. I tried my triptan the first day. It did the sort of decrease the pain for a bit then it came back full speed ahead mate. And the neck pain and was insane!

Next day still had it but I tried to temper it but then accidently aggravated it and then it was full on acute again, but obviously due to my sensitivty to triptans I just tried later in the day to dull it a wee bit with tramacet (a mix of tramadol and tyanol) and that did so very little, but brought it down just enough that at least it wasn't a screaming 10. And the neck pain was insane!

Day three was acute from dawn to dusk. I said screw it to medications because obviously they were doing nothing and at this point could make it worse... hard to say on a migraine like this. So I went for stay in the dark, don't move, don't do anything that would trigger more pain, rest, use muscle creams on my neck, migraine balms all over m…

So close and yet so far away

Yesterday I had an acute migraine. I treated it with a triptan. It half-assed worked. The pain came back for a second round of kick ass. I threw my hands up and said 'you win' and went to bed.

Round two: I woke up with a migraine hangover from yesterday which really when you look at that on a pain scale was like a 4 but my neck was killing me because it had hurt so much the day before. Still I thought I could manage quite well at this stage as long as I avoided any triggers.

Then I did my housecleaning which is part of my assigned routine. I was finishing the bath tub I started yesterday  I did the tub, now I needed to do the walls. Can't do both at once with my nerve damaged hand and my weak FM arms. It's a two day event. So I used the same cleaner. And BAM acute migraine, rapid onset. I can't use the triptan again cause that will aggravate me side effect wise. I have no figured out a way to use the toradol shot yet that will not feel like some is using my stomach…

Reasons a migraine is not just 'a headache'

Spining and spinning

I was reflecting today on my recent trip and all the visual wonkiness. The vertigo and the associated symptoms of migraine associated vertigo have been around for a long time but they have always been anomalies. Or they occured with migraines... generally morning migraines that were full blown acute and had that 'alice in wonderland syndrome' feel to them anyway. It was never anything I was concerned over. Just migraine wierdness. When I started getting episodes as I was falling asleep and in the morning it also didn't bother me because I have such insane sleep issues and when sleep deprived I get hypnotic jerks, of which that falling sensation or spinning is associated with. So it sucked because it is hard to sleep when it keeps happening but it is hard to sleep with hypnotic jerks as well. Then there are the incidents that were associated directly with motion... vertigo from airplanes, elevators, amusement park rides or when I stop my car at a light... ranging from mild …

Trippy road trip

I don't have any real good shots of my road trip into the Rocky Mountains because I took them with my good camera this year which means I have to get the film process but when I do I will likely post some of the good ones on my tumblr account. Anyway after this post you can see a few snapshots. It was a short trip. Half of it travel... beautiful scenic travel. The sort I absolutely love. And we took a few strolls on some of those stops. And it was great. The visit with family was short but it was just a chat and catch up visit and I really enjoyed it. I love visiting with my grandmother. Honestly since I had a status migraine I could not have done much of anything more than just sitting and chatting anyway. I had a slow release painkiller to help me get though the day which did work pretty good, but the pain was always back up to a 9 at night; still I'm glad I brought it since it made that migraine tolerable for the day. So to me it was perfect. Just what I was able to man…

Mini Vacation

I'm on a mini vacation with my mom to visit family. It was a great idea and has taken my mind off my pending neuro appointment and pending review of short term leave. A good distraction and if I do return to work a good time to take a trip.. trips are easier when you can recover from them with no worries. Anyway it has been awesome.

Timing was a wee bit off though since I am right in the bad migraine spot. So on the drive up I ensured I was careful on treating my migraines.. I was not driving of course. My mom was, which was a long drive even though we broke it up into two days. Anyway, into a migraine storm as it were as well. Driving means motion and driving through mountains I suppose even more interesting... so aura wise it has been spectacularly intense. I noticed some swaying vertigo. As in when we stopped to eat I would still feel motion and would sway forward or to the side, and that has been off and on for days now. Or spinning sensations. Then in the center of my visual…

Approaching the line...

Almost time to see the new neuro. I wish he was a genius. I bet he isn't but I can wish. Problem is I think chronic migraines are all tangled up with fibromyalgia... expecially the more I research about fibromyalgia and how it functions neurologically. Problem is neurologists have no interest in fibromyalgia. They should. Clearly it is their field. But people are still stuck on all the old terms and all the old definitions and all the old crapola. So I don't expect him to know much of anything about fibromyalgia or comingle treatments or even consider the syndrome as a serious contributing factor. It is obviously a serious contributing factor. There is the huge issue with sleep, the lack of, that triggers migraines for me and pain causing me not to sleep... and that cycle of hell. There is the heightened sensitivity to light and sound and my enviroment that makes triggering a migraine so easy and really makes me photophobic all the time. There is the very nature of how FM work…

Part 3 - Fibromyalgia: New Insights, New Hopes

Part 2 - Fibromyalgia: New Insights, New Hopes

When he mentions the lack of dopamine and therefore our brains inability to turn off a continuous pain signal that was cool to see verification of that... but then to mention the fact opiates don't work if your dopamine does not work... maybe that is why so many people with FM myself included say we don't find painkillers that strong, we don't get a 'high' off them, and often they are not that effective. For example for migraines my tramacet is so mild it is barely useful, but its the only rescue med I have and I can't take my abortive all the time. Fricken brain. This guy is doing good work though. I think I luv him and I hope he is still doing it. Think of all the people he could help by seeing what is wrong and where it is wrong.... it could develop actually effective treatments.

"Fibromyalgia: New Insights, New Hope" Part 1

I'm stronger in my broken places

I love this quote: The world breaks everyone and aferward many are stronger at the broken places
Because with chronic illness we endure a lot of pain and illness and suffering but we endure and in the end we know about pain, illness and suffering. Challenges happen to us all and we are stronger for surviving them. And we learn a lot about ourselves and others in the process. Admittedly over the course of my illness I would say I was completely broken by it twice and after the first time I was definitely stronger for it and after the second... I'm still working on it. By that I mean I had a dark bout of depression when I was 18-19 caused by all the undiagnosed pain and other symptoms. I conquered that depression myself with some serious changes and effort and went on to succeed. In aug 2010 when the chronic migraines became too much for me I tried to kill myself, and after that I was stunned and disillusioned at how indifferent doctors are to that, how nothing changes, but I chang…

Is work working for me?

I've had a love hate relationship with work for several years now and I think most of us with chronic illnesses can relate to that. We want to be self sufficient. We often tie our identity and self worth to working. We like to feel functional and that we are contributing to society and to our families. Work makes us feel good about ourselves. It is also a distraction from thinking about our pain. It gets us our of our minds and out of the house and engaged in the world. Not being able to work at all is a huge adjustment and one I have yet to make because I have not been able to give up that piece of myself yet. Partly because I feel like if I take away all the benefits I'm not sure if I can fill the void sufficiently. And partly because I know the insane battle the go on disability associated with invisible disabilities such as fibromyalgia and chronic migraines... and I don't have much fight in me these days... it seems my personality style of cooperation is to try and j…

Migraines messing with my mind

Back in the day I was a philosophy major and I think there is a great deal of irony in the fact I loved to spend my time thinking about the distinction between Appearance and Reality. What is real is real, right? It just is. I was always certain of reality, but I was never certain we could truly know it. And as time has passed I am even more certain of that fact. Maybe the average person depends on their brain to tell them what is what, but they are fooled from time to time, even if they are not aware of it. Optical illusions being an example of that. The brain needs to filter a great deal of information and make patterns out of it... and it is not always right. So we can never be sure the reality we perceive to be true is the reality that is really there. People depend far too much on what they can see before them. It is why our invisible illnesses seem to fool people so often. How can you be sick and look fine? How can you be in pain and smile? So confusing isn't it? But that i…

Invisible Disability Week

Invisble Illness Week - check out the link for ideas to participate- there are more than a few of them!!
September 10-16, 2012 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including a virtual conference September 10-14 online for free with speakers.
2012′s theme is INVISIBLE ILLNESS? SHARE YOUR VISIBLE HOPE! This is a chance for participants to upload photos that show their hope to encourage others (both ill and healthy).
There is a Meme “30 Things You May Not Know About My Invisible Illness”, you can sign up to blog for the cause, read guest bloggers’ posts, and get involved in the campaign on Facebook. There is even a free 80-page ebook when you sign up for email updates, with 263 tips!
With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. See InvisibleIllnessWeek.com

The Wii broke my arm

I'll tell you one thing my neuro never told me about this nerve damage in my hand... that it would not only cause numbnes, but that it would also make it clumsy, have sharp burning pain and that the hand and the whole arm would be weaker than my left side... and I'm right handed.

I learned this from trying to do housekeeping.

I further learned this for exercising. I was doing my Wii yoga which was cool. After I was done I thought I would do some balance exercises so I did. Then for fun did some tennis and bowling and that there was a mistake. Now remember fibromyalgia and exercising comes with a certain amount of immediate pain a fatigue so i thought nothing of it at the time.

Today the pain in that arm is way over and above the level fibromyagia would cause given the very limited amount I had done. We are talking maybe 5 minutes for a few mini games involving arm swinging... no lifting weights. The pain radiates from my shoulder down to my fingertips. I can't rotate my sh…

The best laid plans of mice and men...

apparently are not made of fibro migraine afflicted people. Plans go array all the time. Plans just suck. I actually avoid them at all costs but when I'm not working I need to enforce some sort of Routine. Work is something that is mentally and physically exhausting and extremely painful to the point that you cannot do anything else other than try to maintain work, and generally the pain alone causes cognitive impairments that make it a bit tricky to accomplish, the pain itself is a bit tricky to endure. But without work you do need to substitute it with something... because nothing is also painful and causes equal harm. Okay, not 'equal' but you will feel sluggish and sore and cruddy. Not as horrifically bad as working with FM and chronic migraines will make you feel for sure. Frankly knowing my short term will soon be up for review is sort of freaking me out... no one looks forward to more pain, especially not long term acute pain. But I'm just going to pretend for n…

What a pain in the...

I left the house today to get my hair cut and go to the pharmacy. I seriously needed a haircut. And i chose to go to a friend who has a salon in her house. I figured I have not socialized in.... honestly too long to actually remember. I have not seen her in I figure a year since she was not aware of events that happened a year ago... that is how I tell time, by events I know somewhat the timeline on (my brother recently got engaged to his girlfriend who he has been with I'm told a year, ergo since she was not aware of this, it has been more than a year). I have no other perception of time passing. I thought I had seen her fairly recently. So I thought why not go see her for my haircut since I really like her as a person and I can chat with her and help her business at the same time. It was cool. We chatted for a few hours after. I had a real good time. Bonus over and above that... her salon in her house does not Smell like a Salon usually does, so that did not give me a migraine.

Doing the Lurch

This whole vertigo thing is messed up. It is rather hard to sleep when you get into bed, you snuggle into the sheets, you get comfortable and then you Fall. I would assume the bed would be stationary and not thrown onto some random amusement ride. But my brain on the other hand is all for fun and games. It is just a lurching fall. Sort of fall and jerk. Then stable. And repeat. It happens when I am falling to sleep and it happens in the morning.

It happens after plane rides for days.

It happens when I'm driving a car on the highway.

On a boat.

On a train.

This is getting very Dr. Seuss isn't it. On a boat with a goat. I don't want green eggs and ham Sam I am.

I'm wondering if I could set up a soundrack at night to match that Lurch to a Beat so that it wouldn't be so damned annoying... maybe then it would be sort of like in tune with the music and I could fall alseep? Or not.

Migraine dreaming

So when I have a full blown migraine, for days, and go to sleep, generally I'm not going to really sleep for long. It is a sporadic, interrupted sleep. But I do dream, and wake, and dream, and wake.

When I was working this led to a lot of sleep deprivation and sleep deprivation led to sleep paralysis episodes. Often when I had one sleep paralysis episode in the middle of the night it would lead to several. What would happen is I would wake up in the middle of the night, like every night, but I'd be 'stuck' between wake and sleep where your body is still unable to move but I would be conscious of the fact. It is freaky and I have talked about it before. I usually just shake myself awake... generally violently shake myself awake because when you are in this between state sometimes you have these sensations of dreams while awake. Like there is someone in the room. Like someone is staring at you. Like someone is grabbing you. Or squeezing you. Or phantom sensations. Freak…