Hi, I've been a long time sufferer, only diagnosed in 2019, latest episode ended in Sunday. Feeling a mix of emotions, there's no intended purpose to my post, but needed a safe space to share some thoughts, as much as my friends and family care, they just don't get it.
I can't remember when I first experienced my first episode, I've suffered with migraines for as long as I can remember, but I also remember being 15 and unable to cope with the pain, I remember trying to explain the symptoms to my GP and my parents who passed it off as exam stress and me being a drama Queen.
I remember countless days off work and disciplinary proceedings due to sickness, and feeling that the severity of my pain was disbelieved.
my cycles come every 2 years, and typically last for 3 weeks. My gp finally referred me to a neurologist during my cycle in 2019, I had my appointment 6 months later, they diagnosed cluster headaches and recommended sumatriptan and oxygen. Great. 2021 cycle comes and my GP gave me a course of steroids which prevented the cycle, but came with horrendous side effects which lasted way beyond the 3 weeks of suffering if I'd just suffered the cycle, so this year I decided to be brave, hoping the oxygen and sumatriptan would get me through.
it's been 3 weeks of hell. My GP practice merged with another on 1st July, so it was impossible to speak to my GP, the others I spoke to were unaware of the condition. So when I needed more injections I had to fight for more than 2 because of "costs" I was given enough to last a week, when I called back for more I again had to educate the gp of the condition and beg for more. This GP also asked if I think the headache was related to my periods -- The third time I requested more I was told I would need to wait 3 days to speak to a GP. I tried to argue the urgency but was told to call 111 or go to A&E. There was no reasoning with the receptionist so I called 111, when the call handler told me "surely you don't have oxygen for a headache" I knew I wouldn't be getting the help I needed.
After trying all day, My husband managed to get me an appointment, when the gp called and I begged for steroids because I'd had 5 attacks the night before and I was just about ready to give up on life, he refused because the side effects are unpleasant -- I asked for literally any other medication that would help, he said a neurologist would need to prescribe so he'll send a referal, but the current wait is 46 weeks. I requested a referal to a headache specialist instead of neurology at the local hospital, but the computer said no.
luckily that was last week and I struggled through to the other side. I'm now pain free, but emotionally wiped out. I'm so angry that I have to suffer unnecessarily, that I wasn't able to advocate for myself when I needed to most. That medical professionals don't understand the condition and are unable to show empathy. That everyone you speak to seems to know how bad it is because they suffer with headaches too.
im Angry that I just lost 3 weeks of my life because of this condition, that I've been a burden to my family, not been able to be a mum to my daughter, leaving her to make her own breakfast and get herself dressed while I try to abort the 8am attack before the school run. That I've just had to take 3 weeks off work after only being there for 3 months, and being in a new profession. I feel like I've let my colleagues down and my clients. Ive lost fitness and got behind in training, I've gained weight and lost a piece of myself. Although the pain has subsided im still left with the emotional turmoil and I don't know how to get back to "normal" I'm angry that I have to have this condition, that there's no reason for it, and no cure.
and then I feel guilt, for feeling this way when I am "lucky" that I only suffer for 3 weeks every other year. I don't know that I would be strong enough to cope if it went on any longer.
My mission for the next 2 years is to advocate for myself so I can have the support I need in place for the next cycle, to improve my physical and mental health so I can be in the best shape possible, so I can face the next cycle head on. To raise awareness of the condition and fundraise for this amazing cause. I've signed myself up to the vitality 10K (virtual) in September, a half marathon on January to get me started. (I'm just a bit scared to get started as I've only been 3 days pain free, and running is a massive trigger)
