Are you still with me? Today I’ve got a new pattern to share with you and I’m attacking a few more Migraine Awareness Blog Prompts. It won’t put me back at par with the others who are migraine blogging this month. Not quite yet, but I am getting closer! Thank goodness too, because these book-chapter size blog posts are exhausting! How do pro-bloggers do this everyday? Geeeeez! Okay – so here we go….. I’m off and running!
I’m ready to weave some lines on my page! Quick, quick – lets learn a new pattern before another migraine sets in and takes me away from my creative play! We’ll call this one Migracurl .
Here’s your free downloadable worksheet and a quick How-To Video. Enjoy!
And now I move on to unmasking more things about migraine disease. Giving you another peek inside my little world in hopes that it will help break some of the stigmas folks have about this illness and help people become more aware of challenges that can be overcome….. if we each reach out in our own way to help make that happen!
Sleepless Nights Equal Creative Play Time
Migraine Awareness Month #11: Twilight: What power of a vampire or werewolf would you like to have to cope with Migraine or another Headache Disorder? I’m not sure Vampires or Werewolves have any powers that I’d want…. well….. except maybe…… I wouldn’t mind sleeping when the lights are too bright for me and then playing during the night hours. I actually enjoy working in my studio during the evenings. The house is very peaceful at that time and I can easily get lost in thought while working on my artful projects. When I focus my energies on something creative it helps to minimize the emotionally draining side of migraine pain. How about you? Do you find that focusing on a creative project helps keep your mind off of some of those uncomfortable things in life? Does it help you to relax? Oh I soooo enjoy quiet nights alone in my studio!
From Art Studio to Lab Toy
Migraine Awareness Month #12: The Box: You are the experiment: What situation in your Migraine/Headache Disorders treatment has made you feel most like a guinea pig or lab rat? There are over 100 pharmaceutical products and just about as many non-drug therapies currently being used to treat the symptoms of migraine. Doctors and patients have tons of things at their disposal for treating chronic migraine. There’s only a couple of them actually designed specifically for migraine disease. Most of them are used in an off-label manner when treating migraine.
Because of the complexities and the unknowns about chronic migraine, the standard of care includes having patients “try on for size” different therapies until we find the one(s) that will fit our bodies and play nice with us. These trials are sometimes short lived and at other times we need to stay on the therapy for months while it builds up in our systems. If we are lucky enough to find an option that helps to prevent, abort, or minimize the migraine pain – it’s not uncommon for that therapy to stop working later down the line. Then the experimentation starts all over again. Like when I gain/lose weight I have to switch to a different dress size that fits me better – sometimes I have to switch meds because my body has changed also.
Exam room dialog goes something like: “Here – try this. It’s worked for some of my patients.” “You say it made your hair fall out. You gained weight. And now you can’t see straight. But it doesn’t seemed to have help cut down on the migraines or minimize the pain. So – nope that didn’t work. Sorry you can’t remember which is your left and right hands anymore while we learned this. Let’s try another!” “What? You say this second option gives you dry heaves? You can’t eat anything? You’ve lost too much weight? Your migraines haven’t subsided at all? Well darn. Let’s give this 3rd thing a try.” “No? That didn’t work either? Weird. It works for some of my other patients, but of course not all of them. Sorry you lost your job over it. So let’s go for experiment #4, then #5, now experiment #6 and this time we’ll also combine it with this new experimental drug that just came on the market. What the heck. It might just work if it doesn’t kill ya.”
This game gets played for years. I am not exaggerating with that statement! For Chronic Migraineurs – It’s Years!! In the middle of the game you may learn the drugs they were experimenting with had invisible side affects no one knew about at the time or didn’t bother to warn you of. You learn they counteract the other meds you’re on for comorbid illnesses. You find out (the hard way) that the drugs are addictive or your body becomes so dependent on them it hurts worse when you come off of them than it did before experimenting with them. It’s enough to drive a person totally crazy. And yes – some of these things mess with your brain so much that you do indeed feel as though you’ve really gone insane!
You get to the point where you’re almost afraid to hope for the best with the next trial, because if it doesn’t work either – then you know what that defeat is going to feel like. And there’s this fear that sits in the back of your head whispering questions you don’t want to think on. “What if there isn’t anything out there that will help me? What if I really am stuck with this pain the rest of my life? What do I do if we run out of options? Where will we go from here if this one fails too?”
And then it happens! The doctor tells you, “I can’t do anything more for you. You need to learn how to live with it.” Boom! Just like that your heart sinks all the way to your toes and you feel like he/she just sucked the air out of you and stole all your hopes for improvement.
A moment of awareness here for the medical profession: If you exhaust all YOUR options with a chronic migraineur, when you deliver that nasty message, “I can’t help you anymore” – by all means at least have the decency to refer them to someone with more experience and training. You should NEVER be the end of the rope for your patient! Give them hope and encourage them to keep looking for answers. We get emotionally defeated when you say, “you just have to deal with it.” …..And then send us out your door without any further suggestions. DON’T do that to us! You should know better and act more professional with this! I hear so many migraineur stories that includes such experiences and it’s just wrong, wrong, wrong. And this practice needs to STOP NOW! Compassion and common sense should be applied here!
A moment of awareness for the chronic pain patients: If you receive this message (whether it’s once, twice, or 1500 times) do not take it as your last option. That particular doctor may be out of options. But there are even more doctors than there are therapy experiments. And the medical profession is slowly learning more about our conditions everyday. A new option could present itself tomorrow. A cure could be found next week. So don’t give up on yourself, even if your doctor has given up on you. Go find another doctor! And when you do – find out ahead of time how they handle complex patients who they may run out of options for. These are fair questions to ask! Don’t be shy about it. You need to know this, because frankly there may indeed come a time when your doctor does truly run out of options…based on their level of knowledge and experience. And that’s exactly when you need to be referred to, or offered the names of, other specialists who may be able to provide you additional options. It’s perfectly okay to ask doctors how they handle complex cases. If you are a chronic pain patient of any kind – you’re a complex case. And it takes doctors who can handle such cases within their practice to give you the proper level of care. If you don’t get an answer you are comfortable with, then find yourself yet another doctor.
I’m not sure of how many ER doctors I’ve seen, but I do know that I’ve had 9 primary care doctors treat me for migraine. I fired a neurologist who was in no way even close to a specialist for headache disorders, despite his claim to be. I exhausted the skill level of 6 family practice generalists. I have loved my last two neurologists/migraine specialists way of doing business and providing patient care! I’m not so crazy about their billing department, and their nursing staff has a bit to be desired. But their patient care has been outstanding! Remember that you, the patient, are in charge of your healthcare. Don’t allow, “I don’t have any other options. Learn to live with it.” from a doctors mouth equal the same from your mouth. YOU always have more options. You do of course have to learn to live with your condition, however you don’t have to stop looking for improved care. It may be a life-long treasure hunt to find what will help you – but it’s worth it to keep looking. YOU’re worth it!!! And remember that “learn to live with your condition” doesn’t mean the same as giving up or submitting to it without a fight. Learning to manage it (best you can) is a much better way to look at it, in my book. And that part is a must no matter what.
Okay so now with that moment of educational lecturing out of the way – let me REALLY answer the prompt question:
A Long “Roller Coaster” Cindy Story
When did I feel most like a guinea pig you prompt? A scary Topamax/Depakote experiment was the worst for me. This drug falls into the “preventer” category. It’s one that they start you off with a small dose and increase it every few weeks. At some point it supposedly becomes strong enough in your system that it will keep you from having as many migraines and if you are lucky it will minimize the severity of the ones you do have. Like many other drugs it has a long list of possible side affects. Like many drugs, you have to try it for an extended period of time to see if it works for you. Like many drugs, it works for some and it doesn’t work for others.
In my case, this lovely experiment lasted 9 months during which time this particular guinea pig lost a lot of weight, experienced significant eye-site reduction, and all my senses went numb. I couldn’t smell, taste, or hardly hear much of anything. But my teeth hurt all the time. Literally I could barely brush them without tears coming to my eyes. Strangely enough the eye thing is the only sense-weakening I identified at the onset. It happened very quickly. One week I could see just fine. The next week, I couldn’t. All the other senses just slowly weakened without me noticing it at all. It was only after I got off that drug and they started to return, that I noticed a difference. It was sort of like they were waking up after a long nap. Strangest darn thing!
When on Topamax I also became severely depressed. All the while I was telling the doctor the side affects were getting worse and so were my migraines – he kept increasing the dosage. I went from an average of 17 migraines a month to 23. The worst part was that they were more painful than before the experiment started. Which at the time, I didn’t even think that was possible. I knew that my depression was getting to an unacceptable/unsafe level and I told Dr C (whom I loved) that I had had enough! No more experimenting with this drug. It was too dangerous for me. I wasn’t sure if it was the drug or the increased pain that was causing the depression. I just knew it was getting too dangerous for me to handle my own emotions.
It was during this time that my insurance company had me go to Dr Stupid for a second opinion about a drug therapy my regular Dr C wanted to try. Dr Stupid insisted my migraines were due to my depression and if I’d lighten up and not be so stressed out, my headaches would probably go away on their own. My husband and I drove 2 hours to hear Dr Stupid, who couldn’t even read my meds list correctly – diagnose me with “mild stress-related headaches” after spending less than 10-minutes of time with me. I fired that fella’s sorry butt on my way out of that very appointment! Idiot, idiot, idiot! If he was a headache specialist, then I’m Cinderella’s Fairy Godmother! I refused to do the follow up appointment with him in two months! Extra note here – in accordance with HIPAA laws, I added a note in my medical records to dispute this diagnosis. No way I wanted that cockamamie DX on my record! And I wrote my insurance company and told them exactly what I thought of the “specialist” they referred me to. It probably didn’t make a darn bit of difference to them, but it sure made me feel better!
After getting weaned off of Topamax, the migraines did not let up even an inch. But thankfully the depression went away almost immediately! So next we tried Depakote on me, which is another Anticonvulsant. This experiment could have had horrible consequences as well, but I was smarter this time about putting my foot down and saying no before things got too far out of hand. The Depakote experiment didn’t last long because it messed with my cognitive reasoning to a point where I couldn’t really function properly. I was doing crazy nonsense type stuff. I found myself sometimes losing total memory of moments in time. I refused to stay on it after I found myself sitting behind the wheel, in a strange place, at a strange time, and had no idea how I got there safely. That scared the bajesus out of this little lab rat and I got off that crazy exercise wheel right away!
According to the medical journals, I didn’t give it a long enough trial to see if it would work. Bad patient. Bad patient. According to me – I didn’t give a hoot what they thought! I made the wise decision to stop before I killed someone accidentally. Good patient. Good patient.
Prior to those experiments and since them as well, we tried more trials without success. However, currently I am having some success with using BOTOX as a migraine preventer. It took us several tries before this one gave me positive results. And I still get a rebound-migraine from hell the day of and/or the day after the procedure. That bad boy has been less horrible since I’m now getting a Toradol shot on my way out the door. Once Mr Hell-Raiser migraine calms down – so does my neuro system and I have fewer migraines that are easier to manage. Without this preventive I have an average of 25 migraines a month that last 6-24 hours and max out at 10 on the handy-dandy pain scale. With the BOTOX I have 12-15 migraines a month that last 4-10 hours and they usually max out at pain-level 7. If you crunched those numbers, you’d see that I have a better than 50% improvement! <Insert Happy Dance Here>
This makes my quality of life much better and my pain easier to manage as well. Although those level 7 migraines still leave me in a debilitated state, for the most part I can manage them on my own at home. There’s less puking. Less Triptan use. Fewer Asthma attacks. Fewer ER visits for uncontrollable pain too. More days at work and engaged in family life. More time at the drawing table too! I’m not back to episodic migraine stage. I’m still dealing with chronic migraine and it’s not the perfect, cherry blossom life I’d really want for myself. However, it’s certainly better than living in constant agonizing pain.
Okay – enough chatter about the life of a lab rat. It’s such a downer to talk about it and I’m not completely sure of how talking about it with my blog followers is creating helpful awareness. My brain is fuzzy on that one today. It just feels like I’m venting here and sharing things about me that you probably could care less about. If nothing else, maybe you’ll at least understand why sometimes I go weeks without blogging. Those stupid migraine buggers take me down and hold me under sometimes. But I’m a determined/stubborn ol’ gal. I’ll come back up screaming and kicking the living daylight outa’ that guy. If I can muster up the inner strength to do so I won’t let this darn thing get the best of me!
Be that as it may – I do not wish to weigh down the spirits of my blog readers. I’m moving on to the next prompt which I think is a somewhat lighter in subject.
What’s a Girl to Do?
Migraine Awareness Month #13: Sophie’s Choice: What are the toughest treatment choices you face when balancing Migraine/Headache Disorders with other health conditions? Oh this one is easy for me to answer. I’m one of the lucky migraineurs with only a couple of extra comorbid conditions. The one that is the most sensitive is my Asthma. Asthma is another “trigger” induced invisible chronic condition and one of my prominent asthma triggers is NSAIDS. When I take my Triptans (meds designed to abort a migraine) – it can set off my asthma. So my choice is either to attempt to abort a migraine attack (which for me means have it last less than 4 hours if possible) or chance a med-induced asthma attack. Now on the flip side – the rescue med that I use if/when an Asthma attack is nearing – is Albuterol. This lovely little life saver has the side affect of giving me a severe migraine. Quite the dilemma. The phrase, “Darned if you do and darned if you don’t” comes to mind here.
But I’m not complaining. Like I said before – I’m one of the lucky ones! The list of comorbidities is long and nasty. Many chronic migraineurs have a whole lot more comorbid illnesses that cause them way more challenging healthcare dilemma’s. I count my lucky stars for not having more conditions than I do. And if I boil it down to the rawest point – my treatment choice here is really between death by asthma attack or severe migraine pain. The choice is rather obvious to me. The need to breath always wins out. So it’s actually not such a difficult decision to make. It’s just tough to deal with the stupid migraine afterwards.
It is what it is. So I just deal with it and move on to the next adventure in life.
How About a Creative Adventure?!
If you create a little something using today’s pattern share, do it in purple, and show it off online along with a wee bit of migraine awareness info (maybe even link back to my blog too <wink, wink>) – you’ll be entered into the Pretty Paper Giveaway raffle! Wahoo. Come and join the fun! I’ll probably have enough to gift out about 5 packets or so.
If you’re new to my blog, now might be a good time for you to wander over to my Pattern List, to see if there’s anything there of interest. Try your hand at weaving some lines on paper and take a break from your daily routine to relaxe with pen in hand. I’m clicking out of here for now too. I need to soak up some of that lovely fresh air and sunshine that’s calling my name!
Raising my Glass (of water) to a Pain-Free Creative Day!
June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.