New here, so upset they’re back
New here, so upset they’re back
Hello,
I'm new here, but thank you for being a great resource. I apologise in advance if this is a bit of a long 'brain dump', but I find it difficult to explain to people- please remove if this is not the right place to post this.
After almost exactly 2 years, I had another CH on the train to work this morning. I couldn't do any of my usual things (pacing/rocking) and it poleaxed me so much. I'm lucky that I was on my own in the office this morning so was able to fall through the door without having to explain anything. I have had ECH for the last 10 years or so, but their pattern has changed over the last 6, going from March and September/October every year to July once a year. My last episode was 2020 and I genuinely thought they had stopped. I know I am lucky that they are not more frequent or chronic, and lucky that I know zomig helps them, but I can't explain how upset I am that they are back and I am now dreading every morning, and worried they will go back to being twice a day. The cycle of pain, mini euphoria when it stops, spending the day feeling exhausted and thinking about them, then it happening all over again is depressing. Stupidly I find it embarrassing to explain to people why I then cancel plans and it affects my work, and I can't look forward to things because when they start, it touches every part of my life.
As the last time I was proscribed zomig nasal spray was 2020, I need to have a meds review on Wednesday before I can have a repeat prescription. I'm worried they might refuse my request? I have 3 of the sprays left, but they're long past the expiry date. Would it be dangerous to use them? I'm scared of the pain.
sorry to moan, and thank you for reading.
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Hi Rosaline
We all understand here about the misery when attacks return and that dread of when the next one will be! Your GP shouldn't have a problem prescribing for your CH again but why don't you give our advice line a ring and you can discuss treatment options with them. It helps to speak to someone who knows your pain and they'll advise you about your medication at the same time. Ring 0800 6696 824 leave your name and telephone number and your call will be returned free of charge.
Dorothy
Dorothy (Trustee)
Thank you Dorothy- it was a review with the practice pharmacist, who did renew my prescription (after asking if I'd considered ibuprofen?!?) but also recommended having a full review with the GP, which is a good idea. Getting too hot too quickly seems to be triggering these ones in the main so I'm living next to a fan at all times and doing no exercise, which is also making me feel down. Even walking too quickly makes my temp rise so I feel pretty useless at the moment. One positive is that strong smells don't seem to be a trigger this time- I wonder if this is partly because my sense of smell is still a bit off after having covid a couple of weeks ago.
I did wonder if anyone else finds themselves getting a bit obsessed with them during an episode? I find I can think of little else (dreading them/trying to avoid them/reading up about them) which is probably not healthy!
I understand completely! Mine are back after 5 years. I'm finding the main trigger is taking a nap and sleeping. I'm also on Zomig, they do help for most attacks but not all and it leaves me wiped out. I'm also finding I'm needing more than the 2 in 24hours. Trying to get oxygen but no joy as I've never had an official diagnosis or seen a neurologist. Trying to sort all that but by the time I get to see a neurologist they'll be gone (hopefully).
I'm sorry yours are back too- it's so disappointing, isn't it? Is the heat affecting you as well? I'm wondering if I should ask about oxygen, as while the zomig works, I'm worried about using them too much over time. I really hope your episode passes soon- solidarity!
Yes, the heat is definitely not helping. I have the exact same fear with the Zomig. I'm trying to get GP to prescribe oxygen but they say they can't as I've never had a definite diagnosis. I had a GP about 20 years ago say that's what they thought it was but never been referred to a neurologist. I have now but only get a telephone consultation in October, I am hoping that I'll be over this current bout by then. Cooler weather on the way next week and who knows maybe the end of the headaches for another 5 years!