“It’s What We Call Intractable”

I had my appointment with my neuro. His nickname is the headache guy, because he only treats headaches, and he is really great at his job. At my last appointment in October, my MRI findings indicated a primary cause to my pain. He had a lot of theories, but needed to do some more work to determine what, if anything was causing my pain.

My appointment started out with him asking a lot of questions about my life, what I do outside of school, friends, family, relationships.. Which was very odd for him. He was usually only interested in the medical facts. But this questioning went on for a while, until he clued into my confusion. He proceeded to tell me he was trying to determine if I was depressed, but found no evidence for it..but continued on to describe all the things he looked into, but to no avail found nothing. “They’re what we call intractable… meaning we can’t fix them nor do we know what causes them. The only treatment option that I see is a thorough trial of Botox” 

I’ve never wanted to try Botox (onabotulinumtoxinA) , nor do I want too. Ever since it was approved, people have been shoving it down my throat left right and center, but the data is dodgy, and I want good, solid scientific proof. 

My physician pointed me to the PREEMPT trials, and I’ve decided to give it a go after scanning both trails, and a lot of the supporting documents and lit reviews available for botox .. He recommended at minimum 4 rounds before ruining it out.. Thank god for prescription coverage. 

this doctor reminds me of a detective. He seems to love the mystery of migraine and headache disorders.. And it he seemed truly upset that he couldn’t figure out my mystery..

I’m not 100% settled with his conclusion. I assumed he was going to tell me this is my life, but I was still holding out for new hope. 

I’ll always be holding out for new hope. Because really, what else is there? 

Back to University Spoonie style!

Going back to university is stressful by itself, but going back with a chronic illness makes it 10 times harder! My first year of university was kind of a dry run. More of a “figuring out what I want to pursue” year, but it also gave me a year to find out how to deal with the usual stressors of university plus the added stress of dealing with a chronic illness.

Below are my top ten tips/tricks to help make the transition to university with a chronic illness as easy as possible!

 

  1. Get in touch with your Accessibility Office on campus as soon as possible. They can require medical notes/assessment forms that can sometimes take months depending on the doctor. The Academic Accessibility office has been a lifesaver for me!!
  2. Meet up with your specialists in July or August. It gives you time to make sure all of your treatment plans are going smoothly, or try new things before the school year begins! It allows me to get a good grasp on things and try to get a good start health wise in September
  3. Organize your study space: Having a clean and organized study space allows you to keep on top of everything and not let any assignments or notes get lost!
  4. Figure out how you like to take your notes! Some people like using pen and paper, others use their computers, or some don’t take notes at all. Due to the nature on my condition, I find concentration difficult, so taking notes on my computer allows me to get everything down, but still listen to the professor. I was taught touch-typing as a young child, so I can pay attention to the prof, but still type.
  5. Use E-Books if possible! I bought an iPad mini ($320) for my first year of university so I could purchase electronic books, which are considerably cheaper, and much lighter (iPad is super light!!) There is pros and cons to this option. The cons are, you are staring at a screen the entire time you are reading, and for some classes that could be multiple hours, but it all depends on your condition and your preferences!
  6. Get a backpack that can support your textbooks/computers/notebooks/lunch/ect, and spend a good amount of money on it (if possible). I bought a cheaper backpack my first year of university, thinking I would be wasting money, but I soon realized that the numerous textbooks that I couldn’t get on my iPad and my laptop, my lunch and everything else I needed was really heavy! And it started to make my back pain, and strain the muscles in my back. This year I’ve invested in a good backpack- North face Router! It’s really big, as I can’t get my books on my iPad this year, and it has great back support! This backpack is regularly around $159.99, which is a lot, but you can get a really good quality backpack for $50-$100 that will last you your entire program!
  7. Start any assignments/projects as soon as you can! Where I live, all the universities give out the course syllabus at the beginning on the year, which tells you when each assignment is due, and when each test/exam is! It is such a great help for spoonies as I have weeks where I have a surplus of spoons, so if I can get a start on an assignment due in a month, why not! Because who knows where my health will be in a months time.
  8. Adjust your course load accordingly. I started my first semester with 3/5 courses, and for me it’s the perfect fit! My second semester I had to go down to 2/5 due to my health, but thanks to my accessibility office I got the course removed from my records with no penalty!
  9. Take time for yourself. Don’t overbook your schedule and end up crashing and burning. I’ve done it and its not worth it
  10. Have fun! University is such a great time to meet new people and learn new things!

 

I am the 0.01%

As some of you may know,quite recently I was prescribed cymbalta, as it is commonly prescribed for chronic pain and it has a great side effect of fatigue! Exactly what I needed as I was waking up at least 6-8 times a night, which just fuelled the pain cycle.
The great news? Cymbalta gave me the best sleep of my life. That tiny little blue and green pill is a life saver. And in the beginning I had no undesirable side effects. DOUBLE BONUS!! After two weeks of being on cymbalta  “aunt flo” came for a visit. And boy she was unhappy. My usual light short period persisted. One week. Two weeks. Three. Four.five.six. SIX weeks of consistent heavy menstruation. At this point, I knew something was seriously wrong, and off to my family doctor I went, hoping it was just a small imbalance in some hormones. My doctor was quite concerned as I already have some weird blood levels, let alone bleeding for 6 weeks straight  Not once was any external factors brought up. She sent me home with a week of hormones to kick my body back into its regular rhythm as she searched for a safe birth control due to having two neurological disorders.. and just for fun, my doctor ordered a extra set of blood work just to be safe!
 As I drove home my spoonie brain kicked into high gear. I knew I was recently checked for many  gyno disorders which all came back negative, so it clearly wasn’t anything down that road, so I did some detective work and realized that this was my first cycle after starting cymbalta. *que lightbulb moment *
Off to the health Canada website to search the drug monograph. With a quick search of the term “reproductive disorder” and looked through the different side effects and the rate at which they can occur. I found a disorder that my doctor had just diagnosed me with.. Menorrhagia. I look over to the % chance. Less than 0.01%
I couldn’t believe what I was reading. This wonder drug was causing a major health problem and the chance of me having to stop taking cymbalta was high. So I took matters into my own hands and called my pharmacy first.. after no results I called the manufacturer Eli Lilly to get some real answers. To my surprise they gave me nothing. No  valuable information… just a super awkward product specialist  that kept referring to my disorder as “this  disturbance”… weird… The only thing he said was that it was highly unlikely that cymbalta would be the culprit, but i knew deep down it was true..I was crushed.
So we fast forward to today. Where my doctor confirms my original intuition that cymbalta is causing me to experience menorrhagia and that the chances of me having to stop taking cymbalta is very high, but she will try every avenue before it comes to that.. So I play the waiting game hoping that this current hormonal prescription will do the trick, and I can stay on my wonder drug. As I left the office today, my doctor said ”  I think you better  watch out for lightning strikes because you have weird luck”
cymbalta-pill

We have a love hate relationship cymbalta and I

*****Just as a quick FYI this will be my last personal bog post for a month as we are beginning a fun month of guest blogs!  A new blog will be released every Thursday morning, and I encourage everyone to check them out! They will not disappoint!!*****

Day 4:Finding Nemo #MHAM #MHAM13

Finding Nemo: “Just keep swimming”: How do you keep going in life when Migraine or
another Headache Disorder deals you a difficult set back?

I find that the odd time I can get pretty down about my situation, and its taken me a couple years to figure out how to bring myself out of them. I find that talking to some of my fellow spoonies always helps me, but never truly gets me out of what I call the “pit of despair” . I’ve always wondered whether or not to fight it or just let it run its course as I usually try to fight it off, but lately I’ve been leaning more towards letting it take over and run its course. It’s the spoonie version of the fight or flight!

I guess all in all I find myself still pondering whether or not to fight or flight, but I know that I always have the support from my fellow spoonies to bring me through the tough times.

Do you fight or flight?

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com.

Response to “The Big Question” Originally Written by belowtheradar002

Please go check out the original post! It’s amazing

As I read your latest blog post this morning while waiting for my high school bus, I was close to tears. The repeated question”How do we do this? How do you live” is something almost all chronically ill people can relate too. The thought of living the rest of your life in a state of Ill health is daunting as is, but then having to fight for your rights as a patient, a human being, along with trying to retain your health is a massive juggling act that absolutely no one deserves.

I have a similar answer to you K, to this ever daunting question. While I was seeing a neurologist way back in 2008, she didn’t believe in the scale of my pain, so time and time again she refused any type of treatment and just told me “You could be like this the rest of your life, you need to learn how to deal with it.

As you can imagine, when she told me that I was not a happy camper, but I have found out that, her making that statement has forever changed my life. I know that I have No other option other than to go on with my life, with the occasional down days..

But I’m not perfect, I often loose sight of the goal and I lay in bed for days on end, and I let my pain take over.. But having the support from my family, friends and online community can always give me the boost to get back on the wagon!

Again, please check out their original post!

http://belowtheradar002.com/2013/05/08/the-big-question/

30 Things About My Migraines That You Might Not Know!

30 things about my migraines that you might not know! 

  1. The illness I live with is: Maladaptive pain disorder( but many doctors have told me I have chronic migraines) 
  2. I was diagnosed with it in the year: 2011
  3. But I had symptoms since: 2007
  4. The biggest adjustment I’ve had to make is: my social life/ my education
  5. Most people assume: I’m looking for attention
  6. The hardest part about mornings are: convincing myself to get up
  7. My favorite medical TV show is: none: Greys Anatomy
  8. A gadget I couldn’t live without is: my cell phone.. it keeps me connected to my friends when I get really sick
  9. The hardest part about nights are: when I just cannot sleep
  10. Each day I take __ pills & vitamins. Each day I take 5 pills and 2 sprays of a prescription medication, then if its very bad I take a wafer pill just to add to the fun!
  11. Regarding alternative treatments: Physio, massage, acupuncture and now on to the Ceflay anti migraine machine!
  12. If I had to choose between an invisible illness or visible I would choose:  100% visible. If people believed that I was in constant pain, half of my daily battle would be beat.
  13. Regarding working and career: Still a high school student. Struggling.
  14. People would be surprised to know: That I volunteer as much as physically possible
  15. The hardest thing to accept about my new reality has been: Loosing so many friends, and having so many authoritative figures doubt my illness
  16. Something I never thought I could do with my illness that I did was: Complete high school. I graduate this coming June
  17. The commercials about my illness: make me frustrated. They make all my peers think that all headaches can be cured from taking advil. NEWSFLASH. They can’t 
  18. Something I really miss doing since I was diagnosed is: being able spend a lot of time with my friends
  19. It was really hard to have to give up: my old life
  20. A new hobby I have taken up since my diagnosis is: blogging!
  21. If I could have one day of feeling normal again I would: Drink lots of lattes, do lots of shopping with a lot of my friends, go out to dinner with my family then round off the evening with going to a movie theater.
  22. My illness has taught me: I am a lot more mature than most adults I’ve met
  23. Want to know a secret? One thing people say that gets under my skin is: when people tell me they “would die” if they had what I have
  24. But I love it when people: understand, and treat me like a normal 18 year old
  25. My favorite motto, scripture, quote that gets me through tough times is: ” Pain. You just have to ride it out, hope it goes away on its own. Hope the wound that caused it heals. There are no solutions, no easy answers. You just breathe deep and wait for it to subside. Most of the time pain can be managed, but sometime the pain gets you when you least expect it, hits way below the belt and doesn’t let uo. Pain. You just have to fight through, because the truth is you cant outrun it… and life always makes more” Greys Anatomy
  26. When someone is diagnosed I’d like to tell them: Please do not feel alone. Start looking for others like yourself, I promise there is someone out there who has a similar condition.
  27. Something that has surprised me about living with an illness is: How rampant discrimination is.
  28. The nicest thing someone did for me when I wasn’t feeling well was: My mum brings me flowers quite frequently, which I greatly appreciate
  29. I’m involved with Invisible Illness Week because: Well, I just found this online, but I will definitely be participating in invisible illness week next year!
  30. The fact that you read this list makes me feel: like someone cares 

Original posting: http://thatmword.com/post/16590346268/30-things-about-my-migraines-you-may-not-know