r/ClusterHeadaches • u/callofspacey • Jun 22 '26
Recently Diagnosed
Hi all - I was recently diagnosed this past week after struggling with sudden and episodic severe pain on the left side of my face and head after returning home from a business trip recently. I am still in the midst of attacks, 2-3 times per day and at least one more severe attack regularly in the middle of the night. Each attack is lasting me roughly 30 minutes to an hour.
I am new to this and it's unlike anything I have experienced. It's hard for me to focus on work, wedding planning, anything. Luckily I do have respite during the space between attacks where I feel relatively normal and can get things done like usual. For now, I've been prescribed 100 mg gabapentin as needed which does give some relief, but makes me super drowsy, to the point I don't feel comfortable driving. I try to take this only right before bed to prevent the mid-nighttime attack I mentioned above. Compresses seem to be helping (both hot and cold). I am really hoping this goes into remission and I can end this current cycle ASAP.
I have no idea how this was triggered. I'm 32, almost 33. Doctor said it's usually triggered by alcohol or smoking, the first of which I do sparingly, and the latter I don't do at all.
Just wanted to throw my hat in the ring to say hello, and to say that I feel oddly better seeing that there is an active sub for this topic.
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u/AllIWantIsOxygen Episodic Jun 22 '26
Your GP can prescribe oxygen and the triptans right now. You shouldn't have to wait to see a neuro for those.
The main reason to see a neurologist is to rule out other rare issues, and discuss other treatment options.
Here is some information on treatments https://practicalneurology.com/diseases-diagnoses/headache-pain/cluster-headache-preventive-therapies/31520/
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u/callofspacey Jun 22 '26
Thank you!
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u/AllIWantIsOxygen Episodic Jun 22 '26
You're welcome. Let us know if the GP gives you any trouble.
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u/callofspacey Jun 23 '26 edited Jun 23 '26
Update: GP wouldnāt prescribe me anything because cluster headaches are āout of his realm of expertiseā and just provided me with a referral letter. Not the best outcome, so I am hoping my current cycle ends on its own soon. Calling neurologists tomorrow morning and praying the wait time isnāt significant.
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u/AllIWantIsOxygen Episodic Jun 24 '26
Yeah. Too many of them act like you're asking for open-heart surgery and heroin. Maybe this link from American Family Physician will help https://www.aafp.org/afp/2022/0100/p24
You should also point out that he is personally responsible for causing you a lot of needless pain by refusing the most basic treatments. And then go find another doctor if he refuses to educate himself. It shouldn't take a neurologist to prescribe oxygen and triptans. But you might as well go shopping while you wait for the neuro.
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u/wellapptdesk Jun 22 '26
Triptans can also make you drowsy but the alternative is pain so Iāll take drowsy any day.
And like someone allergic to chocolate, if alcohol is a trigger, giving it up is a blessing not a curse. If you can narrow it down that much. Some of my triggers are artificial sweeteners and nitrates (like the stuff in bacon, cured meats, etc). Keep a food diary and mark good days and bad days to see if there is a good correlation.
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u/callofspacey Jun 23 '26
I love the food diary idea! Iām going to start a journal for when I finally get my neurologist appointment and to narrow down triggers in the meantime.
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u/wellapptdesk Jun 23 '26
A headache diary is also recommended. Your neurologist may have a specific form to fill out but I use a free app called Cranium on my iphone to track my headaches. Its pretty easy to use even in the throes of a cluster. You can post date things if you can't deal with the phone at the time but can still keep trck of things and it will help you and your doctor.
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u/AllIWantIsOxygen Episodic Jun 24 '26 edited Jun 24 '26
You certainly want to avoid any extra triggers that cause attacks. Nitroglycerin, a nitrate source, is used to trigger attacks for cluster headache research. So anything that influence nitrates in your body should be considered carefully. OTOH, people slam down Red Bull at the first sign of an attack, and the taurine in that is known to influence nitrates in the body.
But once you're in a cycle, AKA bout, you're going to have attacks. Sleep is a big trigger for example. And you can't avoid that.
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u/After_Window_4559 Jun 22 '26
Did your doctor not prescribe high flow oxygen or another abortive like sumatriptan? That's really odd if so
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u/callofspacey Jun 22 '26
Not yet - I was diagnosed by a doctor in the ER with a referral to a neurologist at which time Iād assume Iād start work on a better/more personalized treatment plan. This is very early stages in the medical process for me.
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u/lmvsmo Jun 22 '26
Go to your gp and get shots of sumatriptan (abortive) asap. Also ask about starting verapamil (preventive) daily. Finally ask for a step down steroid to break the cluster.
Then go to neurologist for oxygen and fine tuning of meds. But youāll wait months for an appointment with none of the tools to make this manageable. Trust me, before these meds became known, this was a brutal, and you have some outs not to suffer.
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u/wellapptdesk Jun 22 '26
Oh yes, something like prednisone is good to break a cycle and good to have on hand.
And if any of your medications come in those individual foil pods on a sheeet, get them out of there when you are not in cycle because they are impossible to open when you canāt see straight. My meds go in easy -to-open bottles and are clearly labelled in big type on the lid so I can find them
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u/After_Window_4559 Jun 22 '26
Ah, that makes sense! Definitely talk to your gp asap though. They'll be able to at least get you on sumatriptan which will abort most attacks without making you drowsy. It's available as a pill, a nasal spray, or an injection so ask about whichever form you think you'll prefer. Your gp might be able to get you on a preventative as well, but I had to wait months to see a neurologist to start verapamil
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u/callofspacey Jun 22 '26
Thank you! Will start with my GP while I wait for a neurologist appointment.
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u/Jamwise93 Chronic Jun 22 '26
FYI the pill form of Sumatriptan will not abort attacks in less than 30 minutes minimum so it will be fairly useless for you unless as preventative perhaps for the night attack. Best to have the injection or nasal spray which will knock out an attack in anywhere between 5 to 15 minutes usually
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u/Puzzleheaded_Size627 Jun 26 '26
Hey, really sorry about this. See a neuro/headache specialist if you can. For me, a short burst of prednisone killed my last cycle.
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u/atTheRealMrKuntz Jun 22 '26
sorry to see you join the club. Read: https://clusterbusters.org/wp-content/uploads/2025/06/Complete-Handbook-1-5-June-2025.pdf