"There is no cure for cluster hea-" nah f*ck this shit. There's no way that's the dead end answer we get. Do you guys have anything that worked for you? Anyone that has gone years without an episode? Any theories at all?
I refuse to give up
My dad has cluster headaches and is down to one steroid shot before he can find a new doctor. He’s afraid to go to sleep because they get so bad. Any alternative options I can help him with? He has had them since I was a kid and it’s a whole situation. He used to have an oxygen tank but doesn’t now. He’s also bi polar so staying up all night is terrible
Hello,
What is your experience with cluster headache attacks, vitamin D levels, and nutrition?
I have had cluster headaches myself for 20 years, especially in February-April. 2-5 attacks per night/evening/morning with shadow pain during the day/ migraine.
Almost 2 years ago, I started a ketovore diet (lots of meat, fish, nuts, and dairy plus some vegetables). What I noticed was that I was pain-free for almost 2 years.
Last winter (December through February), I was a bit more relaxed about carbohydrates, and now in April, the attacks are back.
A blood test indicated that my vitamin D levels were extremely low. And I am now taking vitamin D3/K2 and magnesium as well.
Now I have read online that many cluster headache patients often get attacks in the spring and often have low vitamin D levels as well. I was curious about your experiences.
Today I learned that recent research links the hypothalamus to the attacks. I have now looked up separately which foods support the hypothalamus, and it recommends following a low-carbohydrate diet to combat inflammation in that area. Could this involve a combination of various vitamin deficiencies and sugar causing inflammation in that area?
I have been prescribed oxygen and pills, but I hate the side effects of the medication. I am personally going back to a strict ketogenic diet to see if the attacks stay away this year and next year. I am really curious about your findings and experiences. I notice that doctors only treat the symptoms, which is of course very nice. But I would like to address the cause; I would like to prevent it.
As the title suggests, I think my dad passed it on.
These past few months I've been dealing with excruciating headaches. Feels like a ball of pain growing behind my left eye and completely wiped me out.
It's been almost daily, but sometimes the pain shows up or starts to show up just to go away again really quickly (thank god). There is an entire chance I may be looking into it too much and jumping to conclusions, but having chats with my dad, he seems to believe I share his condition, but from what he tells me, I'm not as incapacitated as he is when they occur. Sometimes I'm absolutely useless flailing in pain and sometimes I can pace around the room.
My question is can I have CH's that aren't as severe as my father's or would that suggest I have something else. In other words, is it possible to not be debilitated during an attack?
I've booked an appointment with my father's doctor to work towards a diagnosis and fingers crossed I don't have it
Hello!
I'm a chronic CH sufferer, but recently I got a job offer in Switzerland. It seems like a beautiful country and the money is great, but I'm worried to death about treatment options, as I treat my CH with Emgality, Verapamil and Sumatriptan, and the former seems wildly expensive. I know there's a sort of health insurance, but if anyone could clarify the issue for me it would be awesome.
After 22 years of annual and biannual cycles I finally have a first line defense. I was able to pick up an oxygen concentrator (10lpm) for a very affordable price on marketplace. This on the same day I had multiple medications denied by insurance. After multiple rounds with the Dr and insurance the insurance company finally allowed me to fill the Emgality rx and gave myself 3 100mg/ml injections a couple days ago. I still have multiple attacks per day but they are 1/4 the pain level as normal and the oxygen shortens the attacks to 10-15 minutes. Not out of the woods yet and but light on the horizon.
Hi everyone. I’ve been a silent follower of this sub for a while now. I think I have cluster headaches, but my PCP diagnosed me with migraines. I’d love to hear from people who have experienced cluster headaches.
Symptoms/Background:
I am 24 F and I have been experiencing headaches for as long as I can remember; however, they seem to be getting more severe as time goes on. I have been taking Topiramate every night and Sumatriptan as needed for years, but I don’t know if they’re helping.
The pain comes out of nowhere, pretty much every day usually right when I wake up or right before I go to bed. It is on the right side of my head, on my temple, behind my right eye, down the right side of my nose (almost feels like in my sinuses), and at the base of my neck on the right side. Sometimes it’s short lived, sometimes it lasts all day and I can’t get it to go away. Sitting still usually makes it worse, so I have to get up and try to do something to get my mind off the pain.
I won’t get any headaches for months and I’ll feel great, so I think I’m fine and just overreacting. Then one day, they’ll randomly come back, I’ll get them every day, and I find myself terrified of when the next attack might be. I’ve gotten in a car accident once because a headache came on while driving and I couldn’t concentrate. I’ve had to go to urgent care several times because the pain was so bad and I couldn’t get it to go away. Sometimes the pain is so bad I get nauseous and I can’t keep anything down until the headache goes away. I have a lingering headache now while typing this 😅
If anyone has any idea what kind of headaches these are or any advice for me, I’d really appreciate it. Thank you so much!
Hello everyone, before I take this up with my GP I wanted to ask for some general advice here about my problems, if they qualify as cluster headaches and whether I'm the only one that feels like this.
I started developing these headaches at the end of 2024. Stabbing pain right above my left eyesocket. Makes me irritable, sensitive to light and nauseous. I told my doctor I'm suspecting a migraine because back then I didn't know what a cluster headache is. I was just told to take the usual painkillers, usually dexibuprofen and the way I get rid of it is usually just trying to sleep it off. I didn't find out that the pain pattern is actually more similar to cluster headaches.
But there's one issue: these headaches are way too far apart to qualify as either. They last for a few hours at a time like cluster headaches do, but they show up like once a month, once every few months, and at the maximum once a week. Which is way too infrequent for cluster headaches. Being sensitive to light and nauseous is also more akin to migraine symptoms.
Do I have some weird Hybrid? Do I have something else? Or am I just partly blessed with the fact that my clusters are not as frequent? Should I still ask my GP about injection based painkillers?
I need to buy a number of new ice packs. at least 6.
Long story short: I had about a dozen Flexikold small rounds, they got tossed in the trash by someone who was “helping” me move. I now only have 2 left! & I’m using my big one
i looked on Amazon, they are very expensive & I could use amore affordable alternative. something that will stand up to getting a bit squeezed, used daily and washes up nice.
FYI I hate the masks. not my thing, lol
Can anyone send me a link to a decent brand.? the beast is making my life difficult and research is hard today.
im in NY, USA
thank you all in advance !
Been dealing with CH's for the last 10+ years, the first time I thought they were migraines because I get those as well and they followed a tweak in my neck I had, that first window lasted almost 3 months and I felt something pop pleasantly in my neck at the end of that 3 months and sure enough, the headaches stopped.
Over the next couple years I would get them what felt like sporadically, it took me awhile to realize they were coming the same time each year, by 2015 I started to notice they'd start up in May and end sometime in early to mid June.
At first they'd just feel like gnarly headaches, the major trigger for me was booze. I'd stop drinking during the windows and the way I'd know the window ended was booze didn't cause a headache. They'd just abruptly stop.
Most of my CH windows are night time attacks, although recently I've been starting to get them in the mornings as well, anywhere between 3 and 8 am, those ones usually last longer too but maybe its just because at night I eventually get too tired to stay awake during an attack to notice it going on so long.
Generally they range from 3 to 5 out of 10 at the start of the window and peak around week 3 or 4 where I get 6 to 8 out 10 and they last longer during this time too.
Hot showers, hot pad, ice packs, these help a little bit. I do TMJ excercises and I think these reduce the frequency a bit, mostly they are 2-3 attacks a night or in the morning time during the peak that lasts anywhere from 10-14 days, then they become every other night, 1-2 attacks. Sometimes they seem to be wrapping up then they flare up again and I get nightly attacks for another week to two weeks.
Generally the full window lasts 6-8 weeks for me every late spring, though lately they feel like the windows are getting longer.
The weird thing was I had covid in 2021 around Christmas and got a CH window for about 6 or 7 weeks right afterwards, then no CH window that May, the following years til now they've shifted about 2 weeks later than the year previous when they start. As if the window is shifting back towards May all on its own, as if it has a mind of its own...like wt actual f is that?
I finally saw a neurologist and he prescribed Riboflavin and Magnesium this year, and the window I anticipated to start around March 1st this year wound up starting March 21st instead. Enough that I began to hope that maybe the vitamins were doing the trick...but no, they began March 21st and are still going now.
I also got prescribed Verapamil but I'm reluctant to try that given some people say the side effects are weird. Also the booze litmus test no longer works. I can drink and not get a CH within hours, that development began a couple years ago, I'm now LIKELY to get one rather than guaranteed one. Its hard to really say if its more frequent if I continue drinking or not at this point, last year I rode the window sober for 2 months and still got multi attack nights and long ones amidst the short ones.
I usually have a bunch of 5's and 6s and a few 7s or 8s (those ones I take a Triptan and usually they work pretty fast). I'm thinking of trying oxygen next year as this window should be wrapping up soon so getting it now seems pointless.
All in all, I get 2 months of hell, about 3 weeks of it sucks the worst and the other times its bearable but miserable all the same. I'm also looking at Emgality as an option.
I have Fibromyalgia and IBS and insomnia, a lingering neck injury from a car accident in 2005 that makes it very easy to tweak my neck, which always hurts during my CH windows, but really it hurts all year long but just worse so during the window.
Just sharing my experience and seeing if any of my weird idiosyncracies with this CH bs is something you can relate to. Lmk what you're experiences are like and share what does and doesn't work for you. Vent if you like, its good to let it out. I flip a nonexistent flying spaghetti monster in the sky quite a bit during these times.
Oh man and hot showers are the best, but 3 a night dries the skin out a ton and also starts making me feel lightheaded and sick to my stomach, so I try to only do those if its really bad.
How about y'all, these suck ass huh?
I used to be extremely productive but over the past month I have been really depressed and unfocused, never really getting anything done all day. Lo and behold I got a shadow cluster today and so that means that I'm going to get a cluster period in the next few weeks. Do you guys experience any mood changes before your cluster period? Or is this just a coincidence. I know clusters have something to do with the hypothalmus.
New medication
Hi my doctor has prescribed me 500mg pizotifen and to lower my dosage of Amitriptaline to 25mg instead of 50mg, has anyone taken theses medication together before and how did it go/ did you have any side effect. I am nervous to start a new medication (pizotifen) and google is saying it’s not wise to take the both of them together?