Chloe - CDPMS
Chloe and her daughter.
Chronic Daily Persistent Migraine Syndrome
“Mostly, I just wish that Migraine disease, especially Chronic, is recognized for the Chronic Pain that it is and it’s not just an inconvenience.”
About Chloe:
I am originally from the UK, I moved to NZ 10 years ago this October. I live in Nelson now. I am a ‘Property Accounting Assistant’, I also currently study Accounting. I met my partner not long after coming to NZ (for an OE), we had our daughter 6 years ago now.
What type of diagnosis have you been given and by who?
Chronic Migraine.
About a year ago I was diagnosed with ‘Chronic Daily Persistent Migraine Syndrome’. At the time of this diagnosis I was in a 10 month long migraine attack but have since had relief days in between so I’m not sure if it can be classed as daily (definitely 15+ a month).
When did you start getting migraine attacks? What symptoms do you have and frequency.
8 years old- my symptoms since then have completely changed.
I get 2 types of migraine attacks, one that almost mimics what I assume is a tension headache but it is unbearable, it sits behind my eyes and at the base of my skull/top of my neck, they can last for days.
The other type is what we have come to refer to as ‘attacks’ they usually start in the middle of the night, last for about 24 hours at a level pain of 10 (and usually sit on the left side of my face/head), the pain tapers down everyday at the morning and then by the afternoon it is a pounding pain, these can last for weeks, I recently had one for 21 days and the worse has been 6 solid months.
I’m lucky to only experience actual vomiting with extreme migraine attacks but generally feel nauseous.
How do you manage daily symptoms and life? - what medications/supplements/natural therapies do you take/do?
The only meds I currently take is Amitriptyline which I started for Trigeminal Neuralgia and was increased to help as a migraine preventative and is the only thing I think I have found that helps, definitely not a cure though.
I have tried sumatriptan (it makes me feel horrible), Maxalt (does not work at all), nortriptyline, at least 3 different types of beta blockers.
Natural supplements: I have tried so many that I can’t even remember them all but a few are, magnesium, Vit E, Hemp seed oil tablets, turmeric tablets (and anything natural that says anti inflammatory lol) even celery juice every morning (horrendous)
When I have an attack, I use peppermint, tiger balm and ibuprofen deep heat.
How have you told friends and family about your condition and what changes have you made to your life?
I just explain to them truthfully what it is like, I am very lucky in that my friends and family are very understanding and always have been.
I no longer run/exercise as much as I would like to or used to, so that has taken a hit. My partner and I are usually pretty social but obviously going out or having people over is out of the question if I'm having an attack.
What do you wish others knew about CDPMS?
I do wish that it could be perceived for what it is, a Chronic Illness with no cure!
My Wishlist re CDPMS:
I wish that it didn’t just seem like I’m making excuses.
I wish people could appreciate the pain I live in 60% of the time.
I wish there was more awareness.
I wish my daughter didn’t have to witness me at my worst.
I wish people knew the facts.