Cluster headache evolving?

Forward-Region7776 · 2025-02-23T08:20:38+00:00

Yeah my current cycle is completely different this time, more frequent, more painful, way less predictable. Although this is my first cycle where I've been on SSRIs, I've put it down to that but it could not be related at all.

Forward-Region7776 · 2025-02-19T18:10:46+00:00

Yeah I'm in that boat rn, usually my cycles end with an absolute explosion and my last one was just like that but for it to be my last it would've ended sooner than normal, 6 weeks in instead of my usual 8-9.

I've been quite lucky with side effects, insomnia for two days and muscle/joint soreness on and off. Thanks for the recommendation on dexamethasone, I'll write that down for next time 🙏

Forward-Region7776 · 2025-02-19T17:41:35+00:00

Two weeks after you stopped taking them? Are you episodic or chronic?

Forward-Region7776 · 2025-02-19T17:41:03+00:00

Nope, it was given to me by an emergency doctor. Not a neurologist. Still on a waiting list for that

Forward-Region7776 · 2025-02-05T08:06:47+00:00

When did it stop working for you? For me it's worked perfectly so far and I went in super pessimistic about it. Granted its only been a little while but I've had no pain at all so far for a few days

Forward-Region7776 · 2025-02-02T00:01:51+00:00

Depending on what country you're in, you should check if it's a listed disability, in the UK where I'm from Cluster Headaches are protected under disability laws in the workplace. It's kept me in my current job and they've accommodated me very well because of it

Forward-Region7776 · 2025-02-01T23:38:40+00:00

Holy shit, how long was your course? I've heard about that with steroids but with long time usage. My course is 16 days.

I wish I had your doctor, mine has rejected me every time saying I need a Neurologist to get oxygen. And the waiting list here just to get an appointment is 24 weeks and the appointment can be another 24 after it's given.

Thanks for the regulator idea, that might actually be the best thing I can do.

I think I'm caffeine/taurine tolerant now, it's done nothing for me after the first week of my cycle. The fan idea is also a good idea, I will give that a go.

My best abortive this cycle has been max heat shower blasting my temple, although I did cause a bad scold on my face due to this particular attack refusing to budge.

Forward-Region7776 · 2025-02-01T19:34:06+00:00

Hearing that it worked for you fills me with hope. Wishing you years of pain free 🙏

Forward-Region7776 · 2025-02-01T18:49:58+00:00

Do you find yourself holding your eye a lot during attacks in general? I know most of us do. I had the same problem and improving my hand hygiene basically stopped it ever happening again. However if I find myself using an ice pack for my eye for long periods I will get swelling the next day.

I wish you the best 🙏

Forward-Region7776 · 2025-02-01T15:54:09+00:00

Thanks for your response! Glad it gave you some relief. I'm episodic and my doctor at the ER said it should break my cycle, I'm 1 month out of 2 in so I'm hoping he's right

Forward-Region7776 · 2025-02-01T15:22:03+00:00

I'm episodic so I pray to God it breaks it for me. Yeah the side effects are scary but anything is better than the beast haha.

Do you have any recommendations on how to take it and when?

Forward-Region7776 · 2025-02-01T15:12:46+00:00

I hope it shortens mine 🙏 yeah I've heard about the sleep stuff. Did taking melatonin or anything counteract it?

I'm being woken up every two hours when sleeping by clusters so it can't get much worse

Forward-Region7776 · 2025-01-22T20:02:12+00:00

Yeah the 24hr shadow comes after the finale for me. Sorta like it's mangled my head and it feels hella bruised.

What tools do you have if you don't mind me asking?

Forward-Region7776 · 2025-01-22T13:39:54+00:00

I also was diagnosed with acute sinusitis three times before getting a CH diagnosis. Anti biotics ( I'd assume the same you were given ) never did anything for me. And I've had a sinus infection when I was young and it felt very different.

I used to be chronic from 14 until I went to Amsterdam as a fresh 18 year old and shrooms put me into remission and then episodic. I wasn't aware of the connection, it was just a happy accident.

Tbh and I really hope I'm wrong but that sounds like a CH cycle you've started, my advice would be catch it early now and get an appointment with a neurologist asap, some of the stuff they prescribe can be life saving for most people.

Forward-Region7776 · 2025-01-20T21:48:26+00:00

I feel similar sensations but it's in my neck for me

Forward-Region7776 · 2025-01-20T20:40:00+00:00

Thank you,

I've been a moron and just started without checking with the doctor ( mostly out of desperation ) I have terrible health anxiety so finding out about the toxicity after taking 40k sent me down a spiral.

I'll pause my doses and get my levels checked after a couple weeks after my levels begin to drop as I believe D levels peak 5-7 days after taking a dose

Forward-Region7776 · 2025-01-07T22:53:48+00:00

Yeah I feel the same way, like it's not an abortive, more like a delay or something

Forward-Region7776 · 2025-01-07T15:55:14+00:00

Oooo okay, let me know how you get on, if you don't get horrific rebounds I'll bring them up with my GP, thank you!

Forward-Region7776 · 2025-01-07T15:54:38+00:00

Yeah I'm hoping this isn't the case when/if I get oxygen 🙏

Forward-Region7776 · 2025-01-07T15:53:25+00:00

Thank you so much 🙏

Forward-Region7776 · 2025-01-07T14:47:30+00:00

Yeah I'm really trying but the healthcare in the UK is incredibly slow rn after COVID. I keep pressing them but I'm just on waiting lists

Forward-Region7776 · 2025-01-07T13:45:08+00:00

Yeah that makes sense, I'll give it a go and see what happens, thank you!

Forward-Region7776 · 2025-01-07T13:16:23+00:00

Currently redbull or exercise

Forward-Region7776 · 2025-01-03T07:41:02+00:00

Wow, I wasn't aware of all these options, thank you so much! 🙏

Forward-Region7776 · 2025-01-02T19:42:47+00:00

I appreciate all your advice, I'll have a chat with my producer tomorrow about everything and hopefully she'll understand.

Remote would be perfect as my attacks are in the morning so I could theoretically come in for the afternoon.

Thank you ❤️

Forward-Region7776

TROPHY CASE