CEFALY IN THE MAIL

Unboxing and demo within the next few days!

MIGRAINEPAL

I signed up for MigrainePal today – an online migraine journal that’s free to use. When I first checked out the site I was really confused about what it actually was and how it worked. That’s partially due to my brain fog and partially due to their vague infomercial. I waited until I had a clear enough mind to navigate something confusing but once I started I found it very user friendly.

Firstly, I entered a bunch of basic information by selecting options on drop down boxes. Eg. common triggers and medication history. The site than created a personalised survey for me to rate each day. If you’re sick and can’t do it, you can easily fill in the gaps when you can. The following images are taken from my journal, so yours could look different depending on your selections.

MigrainePal then compiles all of the information into a handy report so you can keep track and share with your healthcare providers. I’ll review once I’ve had more time to enter enough data to assess the report function.

 

RISK

Migraine attacks can be dangerous. If the pain of an attack lasts more than 72 hours with less than four pain-free hours while awake, it is termed Status Migrainousus, and puts the sufferer at increased risk for stroke. A Migraineur in Status Migrainousus needs immediate medical attention. – Teri Robert, MigraineCast

PODCAST REVIEW part 1

Headache: The Journal of Head and Face Pain

This is the official podcast for the American Headache Society. The episodes supplement their peer review journal of the same name. Each episode presents interviews with researchers & medical practitioners and information about new studies.

I find it a pretty dry listen, but each episode is quite short (mostly 5-10mins), which helps with digesting the academic style information. It has been useful for me in getting information on pharmaceuticals beyond the anecdotal stories in peer forums and what my doctors choose to tell (or not tell) me.

Episodes often cover social impacts, such as the relationships between child abuse, PTSD (Post Traumatic Stress Syndrome) and migraine, which are elements that have been dismissed by all my healthcare providers other than my TCM (Traditional Chinese Medicine) practitioner.

I feel that knowing about these studies empowers me as a patient because when I talk to specialists about them they are more likely to respect my experiences if I can back them up with peer reviewed academic research. It also helps to create an environment where I am a leader in my healthcare and specialists have pressure to not hide information from me (can you tell I’m cynical?). I recommend listening with a pen and paper. Click on the thumbnail to download in iTunes.

ASKING FOR HELP

I got to a point with my former neurologist, Dr. Jane Prosser, where she had run out of treatment ideas. I had something of a breakdown & couldn’t cope. I knew I couldn’t have any decent quality of life going on like this – days or weeks in bed and spending small moments of feeling ok enough to only just keep my life together. I was (and still am) overwhelmed by having to do all the things I needed to do in those small windows of opportunity – let alone make art, socialise or earn some income.

I made this pretty desperate call for help on Facebook (read the rest after the jump).

HEMIPLEGIC MIGRAINE

I came across the term “hemiplegic” the other day. It’s a specific type of migraine. I relate to so many of these symptoms. I’ll get blurry vision, clumsy, confused, walk into things, pins and needles in one arm, switching the order of words around in a sentence, forgetting words, vomiting, convulsions, slack muscles, fainting…

I read it can be similar to stroke symptoms, which is obviously serious and can be life threatening. So even if I think it’s my migraine I’m going to go to the hospital to be safe since my neurologist told me I’m at a higher risk of stroke.

I had a good few years of these every week but they seem to have changed over the last few months to more of a sinus type migraine – mostly pain in my face and neck with blurry vision and mild nausea. Something to bring up with my doctor.

 Read about Hemiplegic migraine here.

POST TCM TREATMENT

I had the TCM treatments yesterday to try and break a 5 day-long migraine. I woke up this morning with some pain in my forehead and a stiff neck, but nowhere near what It’s been like over the last week. It’s nothing a couple of panadol & a coffee won’t fix. I’m going to go meet my boyfriend out for a movie & that’s the most exciting thing that’s happened to me since I took my dog to the park a week ago ¯\_(ツ)_/¯

Note to self – get some orthopaedic pillows.

PEER POWER

The last few days I’ve been checking out some peer migraine groups on Facebook. It’s given me the most amazing renewed hope & motivation to deal with my condition.

I’ve been in such a dark rut after being told by my neurologist (Dr Jane Prosser at St George Hospital) that there wasn’t much more she can do for me & to learn to live with it because “it’s not going to kill you, just make you miserable”.

But after even just a couple of days of reading & commenting on these peer discussions I’ve been exposed to so many new treatment options I’d never heard of before. It really shows how important these spaces are.

Facebook group information after the jump.

TCM & 5 DAY MIGRAINE

Friday was day 5 of an exhausting migraine. The pain came & went (2hour break here & there), travelling from down the centre of the left side of my face to down the lateral side of my face on the right. I had the most intense foggy fatigue in between, nausea and blurry vision.

A friend drove me to my TCM (Traditional Chinese Medicine) appointment since I couldn’t function much. I could gush forever about how wonderful my TCM practitioner is, she always gives me such a high level of engagement and care. I felt great (no pain) & had heaps of energy within a couple of hours of the appointment. I’ll list all the treatments we tried today after the jump.