“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? 

The week from Academic and Appointment Hell

I’ve been both dreading and eagerly awaiting the week for weeks now. On the academic side, I have an annotated bibliography, needs assessment report, midterm, lab test, poster creation, presentations and I’ve been planning a program for my local university. Needless to say, this week academically is very very busy. In addition to all the crazy school stuff, I have two volunteering commitments AND two major appointments “scheduled”

So, late last week I had realized I hadn’t received any confirmation calls, which I always have. So I decide to give both my neurologist and pain management offices a call to double check that I didn’t miss the call..

Yesterday, I heard back from my pain management clinic, which was scheduled for Thursday at 2PM and I’ve had this appointment since September. Apparently whomever scheduled me failed to realize that my physician never works on Thursdays, and that I would have to wait till the next available appointment with her which is on May 12th…. So I was annoyed that I would have to wait an additional two months, but since I was scheduled to see my Neurologist this week, I was less of an issue.

This morning, I received a call from my neurologists office stating that I did not have an appointment this week, and that instead it was two weeks from now, This is when I started to get very very angry. When I received this appointment date months ago, I had immediately called the office to change the date, as I am not available. I had even received a confirmation letter of my appointment for tomorrow morning at 9:30.. My only option at the time was to wait until June for his next appointment.. :/  BUT thank my lucky stars, someone cancelled tomorrow so I will end up seeing him, and I have no idea what to even think about tomorrow…

The plan of my neuro appointment tomorrow is for him to tell me what is wrong. If my CM is primary or secondary, and whether or not my Chiari malformation is rapidly growing (Initial testing shows the development of a 6 MM herniation in 4 years, instead of my entire life)

I’m afraid I am getting to hyped up about this, and that he is going to let me down like he has before.. I’ll update you guys tomorrow (as long as nothing goes wrong) or by the weekend!

🙂

After all these years, my brain still doesn’t know that it needs to stay in my skull.

Well, if you’ve been following my tweets lately, I have received some massive news. I have been wonderfully graced with low lying cerebellar tonsils, or a Arnold Chiari Malformation. In layman’s terms, my cerebellum has herniated, roughly 6 mm out of the regular area in the brain. Weird eh?

In my most recent MRI, I had some extra fancy imaging done, a MRA and MRV, so I got the fun dye in the veins, and also was supposed to have an additional cage around my chest. So not only did they plan to put the cage of doom over my face, they also put one on my chest, THEN tightened it. Now, I am not usually claustrophobic, but after 20 minutes of the technicians trying to find a vein, and multiple botched attempts, I was already anxious and there was no way I was going into a tiny hole with a tight cage around my chest.

My past MRI was at a children’s hospital. It was a nice big machine, with lots of clearance between my face and the top of the chamber and no chest cage… Unfortunately, since I am 20, I wasn’t able to go to the same imaging centre. So I was sent two hours away from home, to a small town so I could get my scans done ASAP. The downside? The clearance between my face and the top of the chamber was miniscule. I could feel my breath return to my face on each breath and on top of that when they tried the whole chest cage, I couldn’t take a deep breath, and they said it wasn’t an option to not have it on.. Holy.. que claustrophobia..

15 minutes later of me freaking out, the cage was not required.. it just enhances photos.. all of that for nothing :/

Fast forward two weeks, I find out that my brain doesn’t know where it is supposed to be.. and maybe this means my CM is secondary, not primary.

I’ll know this week, hopefully the final answer.

It’s weird to think I could be pain free, I don’t remember what it feels like to be pain free. but I can’t get my hopes up.

Any of ya’ll have a arnold chiari? Let me know:)

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!

 

Medication Shaming

One thing that I have come across very often is medication/treatment shaming.Everyone with chronic illnesses have had their fare share with bad mediations. Someting that didn’t agree with them, didn’t help or had a bad side effect. It’s a fact of life for spoonies, but what I hate is shaming drugs that could potentially help someone. It always seems that  if someone had a bad experience with this drug, they posted horror stories on every related post on the world wide web. I swear they were like the soothsayer in Julius Caesar.. Instead of them saying “beware the ides of march” they were screaming “NEVER EVER TAKE THIS MEDICATION. MY AUNTS BROTHERS SISTER IN-LAWS COUSIN HAD A SEVERE REACTION. BLACK LIST THIS MEDICATION. NEVER TAKE EVEN IF IT’S LIFESAVING” over and over again. How is this helpful? It scares patients away from potentially life changing treatment, over a 1 in 1,000,000 chance of that particular reaction.

 

I’m a big promotor of telling people my experience with medication, but my goal isn’t to scare them with my stories. I always want to know what I’m getting into when I begin a medication, as I believe that is my right as a patient, but I think there is a fine line between helping a person and hurting them.

 

What is your thoughts on these types of posts? Helpful or hurtful?

 

Support Pages.. The Good, The Bad, and The Ugly

I’ve recently joined a number of chronic migraine/headache disorder support groups on Facebook. I thought, Hey, why not! might as well get some support from people who really know what I’m going through. What is didn’t expect is members attacking each other for their treatment ideas, ways of life and worse off, being completely downright rude. I’ve never really been a huge contributor to these sites, just watching from the sidelines, jumping in when I feel I can be of help. my first couple of days in the group, I saw people posting, asking for prayers or just venting, and I saw an outpouring of support. I was amazed. I thought, hey, maybe I’ve found a gold mine here. I finally have found what I needed.. But near the end of my first week, I witnessed, on multiple different occasions, people being downright rude… telling others that “you cant be that sick if you’re on facebook” or “why are you in the ER, because you’re clearly not in that much pain if you’re posting here”. I was in shock. Was this page not meant to be a support page? The posts of others poured in, all against the rude poster. But I was still in shock. How could others be so ignorant of peoples personal situations. I see the same rude posters, writing that they don’t understand why doctors/friends don’t believe them. You have got to be kidding me? 3 hours ago, you were publicly shaming others for “not being sick enough and faking” and now you can’t understand why people do it to you? 

This is a constant issue I see in disorder specific support groups. People are too involved within their disorder and emotions fly…

 

I’m a big supporter of joining “non specific chronic illness support groups” because all we need are people who understand the basics of living with a chronic illness. Because deep down, we just need people who understand.

What if ?…What if it’s not “Nothing”

Wow, I haven’t posted since February.. So sorry for being such a bad blogger!! I’m going to try to start being a more dedicated blogger, hope you like my newest post! Please comment below your thoughts:)!

 

If you guys have been following my twitter account, you know what’s been going on in this crazy life of mine. I had an appointment from hell with my pain management doctor, and then she did a 180 when I brought parental reinforcements to my next appointment, and started helping me again (although I’ll never trust her again).. She referred me to the ONLY headache specialist in Atlantic Canada,.. Isn’t that sad? 4 Provinces and there is only one specialist.. Anyways, I get to this appointment, and he’s 2 hours late… After a comprehensive (I mean intensive!!!) neuro exam by a flock of his students, he finally strolled in. I don’t tend to get along with old fashioned doctors, you know the kind I’m talking about, super full of themselves and its their way, or the highway when it comes to treatment. But I thought, hey, he is my only option… better suck it up and hopes he helps me. We go through my entire history, 7 years in full detail, looks at my med list and tells me “ oh my.. These are hard drugs”… Really? Thanks for noticing. We continue with on with the conversation, discussing revising my diagnosis, from Chronic Daily Headache & Transformed Migraine, but he believes I only have Chronic Migraine. Cool. We continue on, and he decides I need to do a further neuro exam, I stick my hands out in front of me and he freezes. Staring straight at my fingers, face in awe, then smiles. Now, I started to freak out a bit, because a neuro smiling at you always isn’t the greatest thing.  My fingers have always been super crocked and bendy, but whatever, no big deal right? Apparently, yes. Big deal. He starts examining my fingers, toes, and then starts trying to find other weird symptoms I have. We finish, and he decides that I need another MRI, this time with an MRA. He thinks there is either something physiologically wrong in my head, causing my hypermobility, or that I have a hypermobility disorder. So, like I always do, I went straight home and went to the Internet… Reading about a disorder called Ehlers–Danlos syndrome, or EDS. I continue reading about this condition, citing that chronic migraine is a common condition associated with EDS, I continue reading about the other associated symptoms, and I have about 90% of the most common symptoms. Now maybe this is a coincidence, as it wouldn’t be the first time this has happened… But what if?  What if all the doctors that told be I am “perfectly healthy” for the past 7 years were wrong? So going forwards, I’m waiting for my MRI/MRA, and then I will go back to him, and start again. 

 

Thanks for reading guys! Hope you all are having a spoon friendly weekend!