Saturday, October 9, 2010

hello again

Hello everyone - I know its been a while. Somehow, life has taken precedence - three migraine hospitalizations since December, applying for and just finding out I was actually approved for disability to my shock and surprise - (don't worry it's the good kind of shock and surprise), a movie right on the horizon (I'm a screenwriter as well as a cellist) and several others I am writing with my screenwriting partner (our new managers are cracking the proverbial whip), my partner losing his job - so add in our struggle to hold onto the house after October (hoping the movie will come in or at least some of the disability money) and a myriad of health problems aside from the migraines (recurring pneumonia) but I'm still teaching which I love (even though only just two days is all I can handle) and writing and spending time with my two big loveable dogs and the supportive love of my partner who has put up with so much -- writing this blog just hasn't been on top of the list. I promise to be better about getting to this, in the meantime remember to pledge to your local NPR station - no one else gives you more health news - anyway hello again to everyone. Here in Goodyear which is a suburb of Phoenix Arizona (actually named for the tires because they used to grow the cotton here that they used to line the tires with) it's finally gotten into the 90's instead of the 100's so we are officially in Fall. I'll keep you up to date (I've got a right achilles tendon that has to have an MRI monday because something is majorly wrong with it) and keep you up to date on the ins and outs of writing and playing the cello and beginning this disability - which I need since I can't maintain a living teaching two days a week. So.... more later - really
Take care all from Ian in Blunderland a place where I try to just get by but life gets in the way!

Wednesday, December 10, 2008

blunderland's a place with 24 hour a day non-stop aura

Hello everyone from Migraineville AZ,
I have migraine disease, that's what a lot of this blog is going to be about at least my experience of living with this disease in its debilitating form, and my fight to live as normal a life as possible. My brain tells the story. Lots of lesions caused by the disease. No one has really answered my question about these lesions. I am just told they are" typical"of migrainated brains. I have had a spinal tap to rule out MS -- there is nothing "typical" about anything that is in your brain and shouldn't be there! What happens to the lesions over time? Can they contribute to other brain disorders?
And finally now the big one. No matter what drug they try or what procedure they attempt, I continue to see aura 24/7. Blue streaks with golden edges, swarms of black dots, especially when I turn my head quickly, golden blue zig-zags, follow the bouncing ball, amoebas of all shapes and colors, pinwheels of silver slicing through my vision, and finally Alice in Wonderland syndrome. When Alice visits depth perception goes to pot, my hand can look huge and the rest of me tiny. It would be a blast if it wasn't so scary. And to all you neurologists out there - why is this my fate, why can't this be fixed, why I am told I have to learn to coexist with it? I have seen constant aura now for seven years, morning noon and night. What switch went off that started the lesions and and began the aura? And to anyone out there who deals with constant aura - please comment.
I was told Lamictal was a good drug for this and it did nothing and it also did not block my migraines. Lamictal was good in only one respect: it was easy to tolerate and the side affects where minimal. But add it to my list of drugs that go in the trash. Sometimes at night - my night vision is all screwed up and it is like I am kind of blind. Last week I walked - nose first into a picture hanging on the wall - I punctured the picture(strong nose LOL) which was a priceless one of a kind Japanese painting. The update with my Lyrica? 3oo milligrams baby! I felt drunk in the morning and whoa - took some Atavan last night and I think the Lyrica tripled my response to it. My words were slurred this morning and my vision was distorted.
And it's way too early to see if this is going to work on my chronic pain and fibro. m. So I had to work, play a rehearsal fully medicated with Lyrica. I though the stand was going to float away. Don't even ask about driving. "Most people tolerate this very well," a quote from my pharmacist. I guess once again I'm not in the "most people" category. But as usual we are left weighing what is worse and certainly I would answer you now that I would take it because I have nothing to lose.
What's some more side affects when I have endured an induced coma, had ketamine make me feel like I was in that long tunnel between life and death and had enough DHE (we're finally all on the same page on this one - for me it does nothing), to kill a horse. And from countless ER and hospital stays my veins are definitely in blunderland. And after all this - and so so much pain in status migrainous the answers for me seem totally inadequate. Sometimes, the only thing that does the trick is the iv zofran (which my ins giveth and taketh away on a regular basis - zofran is not even the best drug for nausea) for the barfing and 2.5 milligrans iv dilaudid to stop the pain - of course all this adds up to an ER visit. For the moment the pain is at a tolerable level. I hate putting those freakin' numbers on it. What it is right now is noticeable but not terrible.
The Lyrica is going to force a nap on me. My record for waking up from afternoon naps to a migraine is not good. We'll see because for all intents and purposes I am a lab rat.
So long from blunderland!

Monday, December 8, 2008

floating in blunderland

Hello everyone from Migraineville Az:
Today we are floating in blunderland. Wonder of wonders my insurance finally figured out the wisdom of taking Lyrica and today we doubled my dosage. They okayed it for five months - after five months if it works in blunderland then it will be back to the fight - but at the moment I can't think about that. By the way - I'm not sure of the process on this site - whether this becomes a blog. In any rate I'm having trouble from keeping the room from spinning and like in South Park - my head floating away. Pretty strong stuff - I hadn't really felt the floating affect till we doubled the dose. So we're at 300. Respectable dosage. Yesterday, before I did this I had a concert with my pianist ( ) at a town about two and a half hours away. I had been dealing with a tough migraine since Saturday. Can't take any pain meds while I am performing or playing a concert so I just have to deal with it - raw and unmedicated. I have to push it into a corner of my wonky brain and give the audience the best concert I can play and be personable as well. I don't know how many of you get a migraine and just don't stop and keep going because literally the show must go on. It is an exercise in extreme will power. When it is all over and the standing ovation we got yesterday (!) was through - in the car on the way back - I felt like I had climbed ten mountains - it was exhausting - I'm really glad I didn't drive. Fortunately I don't have to drive or do anything today. The migraine is lurking in the background - in other words status migrainous - a bad sign - I hope the Lyrica even as new to my system as it is, responds by burying this migraine. Status has a bad reputation with me - sending me to the hospital. That's the ultimate thing I want to avoid - so Lyrica - work some magic! And in the midst of all this - I am a screenwriter as well as a cellist and my writing partner and I are desperately trying to get our producers talking to each other. Oh - gotta get gifts for my GP's office. They are great - got a tip that pottery barn is doing five dollar ornaments. The type is doubling in front of me for now - so that's all.
Peace in this season -
best - Ian in blunderland -

Wednesday, December 3, 2008

time machines in blunderland

Hello from Blunderland! Blunderland you see is a special place. It's where I live: blundering through life in general. This morning was an all out blunder in side affect village, where everyone in my imagination has a side affect they can call their own, sort of like the seven dwarfs except their isn't any Sleeping beauty - there's just me. Dopey, slurring words and blurred eyesight were this morning's side affects brought to you by "Lyrica" at the moment my hero and villain. My hero because the percocet for my head pain stays in the bottle unused. It's a bad guy in side affect village though. I don't have an addictive personality, thank goodness. I guess on the mean streets in blunderland people want to sell that stuff, and I can't really imagine why. I hate all my narcotic pain meds for my chronic migraine and fibromyalgia and not having to use them is a blessing to me. But there's a story there. Lets digress for a moment and take a trip on the blunderland time machine - cue - harp and wavey lines. This past June I had a radical treatment to push the "reset" button for my brain. One can only hope it wasn't like the restart button for Windows XP. As in my program was :"not responding" and needed to end. I was given enough valium to kill a horse - all in intensive care for five days, it was termed a "light coma," in Blunderland there is no "light" anything. I remember bits and pieces. After I came out of the coma and was in the present, they called my partner to come pick me up. What he found was someone who was acting as if I had two bottles of Scotch. He complained to the nurses that due to the hospital mixing in some drugs they shouldn't have while I was de-coma-ing I was worse than I had been while I was in the coma. So I couldn't escape from blunderland's hospital and I was stuck in the there another night as I woke up from the valium and other goodies. After the hospital stay I was told by my neurologist that I needed to see a headache "specialist." Specialists are royalty in Blunderland but they can also be evil. Since - in waking up from the coma I did in fact hit several, "not responding" windows the specialist was going to be my prince and fix me like a broken computer at Best Buy. He was not. All because I blundered and was honest about how many narcotic pain meds I actually had - dating back to 2003 - cumulatively. As in I have had five prescribed over a period of years, not all at the same time. His name was Doc specialist as we will refer to him in blunderland. He made a decision that I was addicted to my pain meds. Something just not possible with me, as I said I don't have an addictive personality, and most importantly I don't like them. I only use them for my worst pain and often have to be kicked into taking them by my partner because I wait and wait and he has to remind me that I don't have to suffer so much. Often late in the game, I take them. They are called "rescue" medication.
Long story short, it had been months and fast forward to an appointment with my neurologist. He didn't want to implement many of the changes the specialist recommended i.e. occipital injections - (injections of lidocaine and steroid in the back of the neck to reduce inflamation of the nerve - a series of them) and I was told to call the specialist back for further treatment. When I did the receptionist pulled my file and said he would not work with me and that I needed to see an additictionologist. I didn't even know what that was. Without fully understanding why I had those narcotic pain meds and how they were prescribed over five years as my GP (he is my prince because he actually listens to me) and me tried to find the one that would work the best, Doc Specialist decided that I was addicted to pain medication. Ludicrous, if you really know me - I don't want to stumble around in blunderland all doped up on pain meds. So now it's in a chart, written down by Doc Specialist. Great. Doc Specialist was by the way an osteopath how this qualified him to be a headache "specialist" I'll never know because he won't see me even though I was not asking for him to prescribe anything. Under the hipa rules I can ask for a copy of my chart and I can write a letter detailing that what Doc. "Specialist" said was bogus and detail how it is dead wrong. Basically a letter of protest. I count my days when I don't have to take pain medication. Right now it is 14 days with nothing because the Lyrica which I basically self-prescribed (asked my GP if we could try it even though my ins. doesn't cover it) is working well. In fact, it's a miracle drug at this moment in time. An "addictionologist" however you spell it is not necessary. It's a cruel joke. So there you have a little bg. A day without head pain is a day in blunderland heaven and today? I'm swimming with the angels! Going to get my haircut. In blunderland I don't like people who massacre my curly, thinning locks so I yes pay thirty dollars for a haircut. Remember that recent president on the runway? Wasn't that a 400 dollar haircut? So thirty is not so bad and lets put it this way - in blunderland G-d gives you one head and someone at Great Clips is not going to touch the blunderland locks. And I get a great scalp massage. Okay.Okay. Thirty is a little much in an economic downturn. There's a recession in blunderland too. The idiot economists just decided yesterday that yes, we are in a recession. But I have to be on stage and perform with my cello and piano duo so I have to look good. It's the one luxury I allow at the moment. One of my big dogs is in here all the time when I'm at the computer. He farts and snores! Ah the "best-life" of a dog in blunderland. They are the true royalty in blunderland. My auras, a blunderland constant, are making this look like the song words with the bouncing ball at the moment and my keyboard just turned blue. Since I have auras all the time - I can't use it to predict a migraine like so many of my fellow migraine sufferers. So long from blunderland - be well!