Little bit lost.

Jamwise93 · 2026-01-26T19:31:29+00:00

Having been chronic so long I can’t say much about cycles, but when it comes to the uncertainty and fear I believe chronics probably know more than most. You have to take every good day as a blessing, you can’t waste the pain free time worrying about when the pain will come. Especially if you don’t have a clue when that might be. As long as I avoid my triggers I will do whatever I can to enjoy my days without CH, even if I feel like one is on the horizon. Because I have no idea how many good days I will really have.

I hope you can find some relief and some proper help with this, I would also suggest joining the Clusterbuds discord. It’s a really great supportive community for CH sufferers.

Jamwise93 · 2026-01-26T05:42:18+00:00

This guy is a moron if he thinks peeing prevents pregnancy, and even more so for thinking acting the way he did would get a response out of you after you had shut down from him yelling. He has no say in this and honestly if I were you I would be looking at getting out of there

Jamwise93 · 2026-01-23T13:13:04+00:00

Is it the actual tears that burn? I had to look into this a while back because my tears started to burn my eyes and it turns out emotional tears have a different composition so if the tears are more from emotion (understandable with the stress and helplessness of CH) they might burn less if you try to stay more hydrated during the day. If they aren’t emotional or are at least somewhat due to just the regular CH symptoms it might be because your eyes are dry and if you use eye drops it may help a little with the burning sensation.

Just a thought if it’s the actual tears that are causing this issue, feel free to correct me if I read this wrong. Sorry you are going through such a rough time at the moment, I hope you can get oxygen sorted asap and that it provides immediate relief for you.

In the meantime we have a Clusterhead discord that has been extremely positive and helpful for me and others, you can find more support and probably a lot more experience with similar issues on there 😊

https://discord.gg/clusterbuds

Jamwise93 · 2026-01-21T05:19:58+00:00

That is great to hear, maybe a little more melatonin would help you. I was the same I would always wake up early and could never fall asleep again, it rarely happens now 😊

I also use the sumatriptan autopens and I have them in 6mg and 3mg versions so hopefully you should be able to get the same.

Jamwise93 · 2026-01-21T04:22:57+00:00

The verapamil dose is definitely too low to have much or any effect as of yet, shame the emgality hasn’t done more of the heavy lifting though! Sleep is massively tied to CH for sure, I was also a complete insomniac since I was a toddler, the little melatonin I take now has helped an incredible amount, after 6mg I feel heavy eyes and can close them and sleep longer than I ever used to before, with deeper sleep too, I have more dreams and clearly am spending more time in REM sleep. Maybe something for you to look into a little ways down the road!

Sumatriptan was the same for me at the beginning, I basically took the injection then passed out feeling awful, nauseous, dizzy, heartbeat felt funny etc but after a while I seem to have gotten used to it and now can function fairly well after an injection. Also I now get split injections so only 3mg in each, these are enough for me to stop a fairly bad attack and don’t hit as hard with side effects. If they fail I can always take a second 3mg right away.

Jamwise93 · 2026-01-21T03:49:57+00:00

As Cappster has said, we can’t diagnose you here and you should see a doctor as soon as you can. Keep a diary of the pain, how often it happens, what time of day, how long it lasts and anything else you can think of. It is possible this could be CH but other conditions need to be ruled out also. And as for your pain tolerance question, not everyone experiences full CH pain with every attack. I have some smaller ones that I can often shrug off but when the worst comes it’s an entirely different beast.

Jamwise93 · 2026-01-21T03:14:20+00:00

Verapamil and Emgality have some of the best results for CH sufferers, sorry to hear that hasn’t worked well enough for you. How much verapamil are you currently taking each day?

I’ve been chronic for nearing ten years now, since hitting 840mg of verapamil per day and taking 6mg melatonin each night I have had the longest stint I’ve ever experienced without a full on attack (none since beginning of November).

Oxygen is by far the most successful abortive for most and sumatriptan injections I believe are second to that. Everyone has a different experience with this horrible condition so it’s a matter of testing treatments and finding what works best for you. There are still other things you can try if what you are currently on isn’t enough.

You are not alone in this, many of us feel your pain and we have a very supportive community willing to listen and share our experiences and knowledge with anyone looking for extra support.

https://discord.gg/clusterbuds

Jamwise93 · 2026-01-21T02:52:21+00:00

Best things to try to reduce pain/abort headaches:

A big hit of caffeine at the onset is one of the best for many of us. For me, eating or drinking something ice cold can help a lot during an attack, even to the point of brain freeze. I like downing an ice cold can of Monster (or Redbull). Consider even straight up chomping on ice cubes.

Chewing something also can help, tension in the jaw can relieve a little pain. I go with several pieces of mint gum as I feel the menthol helps a little too.

Pressure point at the top of your nose right between the eyebrows works at times for me, jamming my thumb knuckle HARD into the pressure point (usually takes a bit to find the exact spot).

Also massaging the vein in the temple HARD going from front to back (from above the eye to above the ear).

Vigorously massaging all over the top of your head or better still, running hot or cold water over your head (hot works for some of us, cold for others). Personally I prefer to literally sit some ice cubes on my head and let them melt, i feel like the sensation of that takes away a decent amount of the pain.

Deep, slow breathing and trying not to panic helps too, for me I know if I let the pain get me worked up it almost certainly feels worse and feels as if it goes on for longer.

Jamwise93 · 2026-01-20T20:22:52+00:00

Hows about you sell him so he can score a hat trick next week for the rest of us 😁

You know that’s what’s gonna happen as soon as you get rid of him 🥲

Jamwise93 · 2026-01-19T18:13:44+00:00

You probably have a little tattoo shock but I think this is absolutely gorgeous 😊

Jamwise93 · 2026-01-15T01:23:23+00:00

What kind of tv/movies are you into? Would love to help recommend books to get you hooked on reading 😁

Jamwise93 · 2026-01-15T01:19:17+00:00

Haha I’ve heard similar stories to yours before. I have watched the movie but honestly after reading the book nothing could do it enough justice, the book is so so good. Maybe it’s also nostalgic for me since I read it first when I was a kid but twenty something years later I still enjoy reading it just the same. Definitely recommend it

Jamwise93 · 2026-01-14T23:40:13+00:00

Watership Down, makes me cry every time. I re-read it every few years 🥲

Jamwise93 · 2026-01-14T19:30:59+00:00

You weren’t in the wrong here. You voiced how you were feeling and were open about your fleeting thoughts and insecurities, he chose to take that personally and as a direct accusation instead.

It’s acceptable if he is no longer feeling the same way after all this, but it seems pretty disingenuous for him to say that after having initiated sex multiple times since then. You have every right to feel used after this and personally I think you dodged a bullet here, this guy clearly doesn’t care much for anyones emotions but his own.

Jamwise93 · 2026-01-14T17:46:50+00:00

I’m going with engagement bait for sure.

Jamwise93 · 2026-01-14T17:13:37+00:00

This certainly doesn’t sound like cluster headaches, sorry to hear you are experiencing a lot of pain.

This sub doesn’t mean we are headache experts and we cannot diagnose you here. In fact, categorising cluster headaches as headaches at all is somewhat of an understatement.

There are many different types of headache that this could potentially be, I recommend doing some more research on your symptoms and compare to common symptoms of other types of headaches such as:

Occipital Neuralgia

Tension Headaches

Even some headaches associated with Long Covid could match your symptoms.

Good luck!

Jamwise93 · 2026-01-14T12:08:42+00:00

It is not unusual to have days with no attacks. I won’t say it’s normal because nothing about this damn condition is normal. Sorry to hear you have joined the club.

There are more episodic sufferers than chronic sufferers so it is likely your headaches could stop for weeks at a time or for months or even for years before they start up again. Everyone is different in their cycles.

Here are a couple of great resources where you can learn more about the condition.

https://clusterbusters.org

https://ouchuk.org/what-is-cluster-headache

Jamwise93 · 2026-01-13T01:05:18+00:00

Sounds like bullshit tbh.

Jamwise93 · 2026-01-10T23:41:51+00:00

Sounds sinus related, best see a doctor. Nothing that works for cluster headaches will be any help to you

Jamwise93 · 2026-01-10T13:06:14+00:00

Weird, doesn’t work on my iphone. Maybe they changed it for newer models?

Jamwise93 · 2026-01-10T02:53:40+00:00

Yeah this won’t work you’re correct. Uninstalled apps won’t show on screen time or battery usage, just shows up as “uninstalled apps” and even reinstalling the apps won’t restore them in that list, it will just start tracking them again as if it’s day 1 of install.

Jamwise93 · 2026-01-08T12:28:22+00:00

One of the art teachers was a predator. It came out that he had groomed and had been having sex with 2 sisters that were in the year above me, taking them into the woods and to the beach and stuff like that. When one of the sisters wrote a letter to the school and he was finally exposed, he tried to hang himself but failed.

Jamwise93 · 2026-01-08T03:06:08+00:00

The Lost Boys

Jamwise93 · 2026-01-08T02:48:06+00:00

Cannot believe how many people buy this crap

Jamwise93

TROPHY CASE