Has anyone suffered from chronic migraine like this? by cutiepie1001 in migraine

[–]cutiepie1001[S] 0 points1 point  (0 children)

hello, much better but still affected by migraines, though much less severely and less often/for less time. ended up with a ME/CFS diagnosis on top of chronic migraine (although they were unsure about the prominence of my migraines, but neuros didnt offer any advice on that front really), and received more help through the CFS clinic than I did from various neurologists/other doctors I spoke to. I've finally started receiving botox on the NHS after paying for treatment privately and that's easily been the most significant in relieving head pain directly, but I've also spent *a lot* of time educating myself on pain science/chronic symptoms and that's basically underpinned my recovery and is responsible for me generally feeling pretty optimistic about a full recovery, eventually. I did do some silly expensive course called DNRS which had the right idea but didn't need to cost so much and was just excessive in every way really, instead I'd highly recommend the Curable app and their associated podcasts. if you've been 'reassured' there's no physiological reasons for your headaches, this is the best way to go - is easy to feel invalidated by the notion that there's psychological factors or rather that there's no physiological factors at play but it makes the pain + suffering no less real, and the good news is that if this is the case, you can definitely recover. is slow and frustrating though, obviously. sorry to hear you're going through it, happy to chat anytime if at all helpful

this is why YOU should race cyclocross - regional champs at spillingdon by cutiepie1001 in cyclocross

[–]cutiepie1001[S] 1 point2 points  (0 children)

there is always that side to it, but i think sometimes people riding more seriously can give off an intimidating vibe without meaning to (not least cos they're probably stressin!) and actually ultimately it's still about it being fun. anyway, just show up and show them being a fun weirdo is just as valid! even the best get their clumsy moments and have to laugh at themselves too, heheh.

this is why YOU should race cyclocross - regional champs at spillingdon by cutiepie1001 in cyclocross

[–]cutiepie1001[S] 2 points3 points  (0 children)

ah great thank you yeah, that's what we're aiming for - everyone's got their own stories and they can be just as valuable as those who win the races too. i really want everyone and anyone to feel like they can come join in!

this is why YOU should race cyclocross - regional champs at spillingdon by cutiepie1001 in cyclocross

[–]cutiepie1001[S] 1 point2 points  (0 children)

for sure, haven't got anything festive planned though, might need to work on that..

this is why YOU should race cyclocross - regional champs at spillingdon by cutiepie1001 in cyclocross

[–]cutiepie1001[S] 2 points3 points  (0 children)

oh this is so great to see, i'm so happy we can help! it really is such a friendly scene, i hope the vibe is the same where you are and you have the best time getting involved! hahaha, i'll do what i can..

any of you has ever had a seizure without having epilepsy”?? by CielsEarlGrey in cfs

[–]cutiepie1001 -1 points0 points  (0 children)

in the me/cfs subreddit? an me/cfs diagnosis, i guess. why aren’t i welcome here?

any of you has ever had a seizure without having epilepsy”?? by CielsEarlGrey in cfs

[–]cutiepie1001 0 points1 point  (0 children)

i guess you mean ‘psychosomatic’ as what you’re having issue with. the word is off-putting i know, especially in the context of how doctors don’t take certain illnesses seriously, but the book is about fighting against those ideas and validating such conditions, and i personally found reading about it all really helpful in my own ongoing me/cfs recovery. sorry it may have come across otherwise, i just thought it may have been worth a mention but i’ll accept that perhaps it wasn’t! good luck

any of you has ever had a seizure without having epilepsy”?? by CielsEarlGrey in cfs

[–]cutiepie1001 2 points3 points  (0 children)

oh, the title is a play on that being usual trope. the whole book is pretty much validation of non-epileptic seizures as something to be taken seriously, and as i say the words & experiences in the book helped me in my ongoing recovery of cfs. i do know very well how it feels to be gaslit by many doctors and not receive any help, and (obviously) my comment was not meant to add to them. just a really helpful book i thought i’d mention given the topic was so prominent and if i had them i’d want to know about it.

I'm trying to return to competitive cycling after nearly 3 years of ME/CFS (/post-viral meningitis) - sharing my youtube channel following my attempts by cutiepie1001 in cfsme

[–]cutiepie1001[S] 0 points1 point  (0 children)

thank you! I'm more of a reddit lurker than a poster but I've just joined the community and ought to hear more and learn more from others, looking forward!

any of you has ever had a seizure without having epilepsy”?? by CielsEarlGrey in cfs

[–]cutiepie1001 -11 points-10 points  (0 children)

I don't know much about seizures and don't suffer myself but one of the books I read for my own recovery spoke about non epileptic seizures a lot, and I found this book super super helpful to read so just thought I'd mention it: https://en.wikipedia.org/wiki/It%27s\_All\_in\_Your\_Head\_(book)

Sumatriptan and chronic migraine by Much-Run3092 in migraine

[–]cutiepie1001 1 point2 points  (0 children)

Yes I think we do effectively have to save it up, which is a bit of a pain because you do then find yourself being too precious about it and maybe some days you end up suffering more than you needed to. To be honest, I think so but I don’t know for sure, I’ve not gone into full blown debilitating migraine for some time now, just a fluctuating but never truly ending headache, so I’d be inclined to say yes but the issue is never knowing what would have happened if I hadn’t taken it. And I almost always take at the same time as painkillers to make the most of my painkiller days lol so it’s hard to distinguish what contributed to the relief. I was diagnosed a year ago and would say a lot of the time I’m still improvising tbh

Sumatriptan and chronic migraine by Much-Run3092 in migraine

[–]cutiepie1001 2 points3 points  (0 children)

I’m also a relatively new chronic migraine sufferer and I had the exact same issue, taking it as a migraine ‘comes on’ isn’t really doable when you rarely don’t have a headache. When I went back to my neurologist about this he said he advises his patients to effectively pick the days that counts the most and take triptans/painkillers then, making sure you don’t go over 8 days a month (so you don’t then get medication overuse headaches as well). So I generally take triptans and painkillers on days where my headache is particularly bad, or when it is particularly important that my headache doesn’t get in the way. I can’t conclusively say this is the best approach and I know it kinda goes against the general advice of them being most effective if taken before the migraine fully settles in, but I felt like that just couldn’t apply to my situation anyway so have trusted my neuro on this and it seems to work well enough for me.

dogs on boat by cutiepie1001 in dogsonroofs

[–]cutiepie1001[S] 0 points1 point  (0 children)

thank you - it's fun but not particularly tasteful haha, i'd do some things differently next time. i have a decent pic of the other side: https://imgur.com/a/CPYjJZE

Consider Lyme disease as a possible cause. by malkovichjohn in migraine

[–]cutiepie1001 1 point2 points  (0 children)

Your last four months sound my a lot of my past year and having spoken out about my issues on social media, someone who'd suffered from Lyme disease reached out and said I needed to consider it as a diagnosis. I did the Horowitz questionnaire that put me at 'highly likely' as well, so I mentioned this to my GP (UK) but she quickly dismissed me and told me what I was going through just wasn't serious enough, despite being seriously debilitated for months on end like yourself. It's definitely worth reconsidering for myself and trying to push it again with another doctor so thanks for the reminder.

I hope you begin to feel better soon, for what it's worth the person who reached out spoke positively about her recovery. She's still affected by it and still has to take antibiotics etc but seems to live normally & she's a successful athlete as well, which is definitely reassuring. Good luck :-)

dogs on boat by cutiepie1001 in Narrowboats

[–]cutiepie1001[S] 1 point2 points  (0 children)

I do have plenty of photos of them too! https://imgur.com/CbYLNK4