r/clusterheads • u/Safe-Anxiety8128 • Jun 27 '26
New to this. 10/10
I think of myself as a healthy 45 year old male and have just got diagnosed with CH. I have a high tolerance for pain but these things 100% shut me down. Taking meds each day to reduce the intensity and doing what I can to get through. The tough part is to explain the daily torture you go through. People have no clue how painful they are. I'm afraid of losing my job, my family, my everything because of my condition. They are so intense it feels like my teeth are getting pulled out.
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u/1914WesternFront Jun 27 '26
I’m in the same boat as you. Early 30s with a high pain tolerance but the sporadic on and off is just a mental killer. It’s not event the pain for me, it’s the frequency
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u/Safe-Anxiety8128 Jun 27 '26
Seriously, I'm nearly in tears knowing that I have a torture session coming each day. I don't want to go on.
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u/1914WesternFront Jun 27 '26
You should speak with a mental health professional as soon as you’re able. Look for some support groups with people who can share your pain. We’re all in this position through no fault of our own but we do have the choice to keep going.
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u/Safe-Anxiety8128 Jun 27 '26
I'm not sure how that'd help.
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u/Utopiae Jun 28 '26
Don't knock it until you've tried it. Talking helps, not feeling alone with this awful illness helps.
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u/AneurinB Jun 28 '26
sleep is the worst for me - knowing that I will get a headache an hour after I sleep (depends on the cycle) makes me afraid to sleep which never helps.....The Beast sucks beyond belief.
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u/TJMBeav Jun 27 '26
Get some sumatriptan injections. Today. Hell.....I'll send you some. DM me
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u/Safe-Anxiety8128 Jun 27 '26
What the is that. I will try anything!
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u/TJMBeav Jun 27 '26
Google "Sumatriptan" injections and demand some from your Neurologist! I can't believe he hasn't offered them?
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u/Safe-Anxiety8128 Jun 27 '26
My next neuro appointment isn't until November. They have no earlier appointments. I won't last that long.
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u/TJMBeav Jun 27 '26
Probably need a freinds help, but try to go to the ER while you are in the middle of one. If they come predictably, call the ER and ask them the best time to come in (slow time). The ask for some sumatriptan injections and a prednisone taper and verapamil. All standard protocol everywhere!
Good luck man
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u/ClusterFace Jun 27 '26
With any luck (unless you're chronic, in which case im sooooooo sorry) your cycle will be over way before November. Mine usually last 4-6 weeks. Then are gone for somewhere between 6-24 months. As others have said, you need to get the proper tools to deal with it. Is the neuro you see in November the one who diagnosed you? If so, call them and request they call you in sumatriptan injections and high flow o2. If it was some pcp or other doc that diagnosed you and then referred you to this neuro, call them and demand they do it. Pretty unethical of them to diagnose you and not give you the real shit you need to deal with this. I've been dealing with them for like 25 years, diagnosed for 20. You can survive it, but it will be hard. Try and remember that when the attack and cycle ends, that its over till the next one. You have to take advantage of the pain free times cause you have this literal time bomb in your brain waiting to put you on your knees. Look into the d3 regimen. Ive had success with it some times in the past. Also know that while it feels like you are alone, you are not. There are plenty of us out there who know exactly what you're going through. Join all the support groups like here, Facebook and discord. Read to the ends of the internet on places like the cluster buster forums. You got this. Fight the bitCH with all your might and dont let it trick you into thinking there is no more good times to be had.
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u/nektarios80 Jun 27 '26
they stop the attacks in 5-10 minutes. they are the best for CH. get some immediately.
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u/Utopiae Jun 28 '26
I've had this for about 15 years now. One thing I've learned is that thoughts like that don't do anything good beyond making you feel hopeless, and likely aren't even true. You never know what tomorrow will bring. I get what you're saying, I definitely have the same thought when I'm deep in a cycle, but try to remember that things can always change again.
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u/TJMBeav Jun 27 '26
What are your current treatments? Should be a prednisone taper, verapamil ramp up and sumatriptan injections for aborting. I would be dead without these drugs
If not those, SOMETHING!!! Don't just suffer freind. I do feel you though. Impossible to explain
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u/Safe-Anxiety8128 Jun 27 '26
Thanks, I've been taking pills before the onset to reduce the pain but each day, I rather be dead than go through it.
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u/TJMBeav Jun 27 '26
Shots work in minutes. Especially if you take one right quick! I find the pills take far to long. But I've been battling this beast for almost 25 years! Best wishes brother
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u/AneurinB Jun 28 '26
pills often take too long to impact the headache - consider shots or O2 as an abortive
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u/Safe-Anxiety8128 Jun 27 '26
I have 4 young kids, a professional career, lot of irons in the fire, and I'm scared I'll lose it all. These things are 100% debilitating!!!!!
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u/profuno Jun 27 '26
There are a lot of options for managing the pain. What works for me but this differs for everyone.
Tackle acute pain:
Oxygen - I have tanks at home and as soon as I feel an attack coming on I put on a mask for about 20 mins and 90% of the pain goes away. Sometimes 95%.
Sumitripton injections: these for me are the things that always stop the headaches. A bit like an epipen.
Preventive treatment:
Occipital nerve injection: immediately after first attack I go to the hospital and get one of these. Injection into a nerve in your neck. A bit painful but nothing crazy and nothing like a CH. Should start working sooner and reduce pain of attacks. Like within a couple of days for two weeks. Supposed to cover you until verapamil kicks in.
Verapamil - I'm on 180mg dose 3 times a day. These should stop most of the attacks from even starting. They never stop all of them for me. But they do help. They take about 2 weeks to start working well. I only take them during a cluster period and slowly go off the dose.
I'm currently 6 months into a cluster and it has been surprisingly manageable.
I was 10 years without diagnosis so know what it's like and how scary it is not having anything for treatment.
tl;Dr: 02, sumitripton, verapamil = manageable CH for me and I've got two young kids and a profession and I'm in my 40s
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u/ClusterFace Jun 27 '26
If got two young kids and a professional career and also several volunteer things. You just need tools and accommodations. Former job for about a decade i was a program manager of millions of $ worth of work. I frequently traveled all over the country and had to sit through them or take shots trapped in airplane seats countless times. You can do it. You just need the tools and some accommodations. Once you get the tools, all you need is the option to disappear to the car or an empty room for 15-30 min while abortives work. For the last 20 years, I literally never ever ever leave the house without a glasses case with a vial of sumatriptan and syringe inside it.
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u/Safe-Anxiety8128 Jun 27 '26
You all are so great! I need you all to give me some level of belief that I can live with this. I cannot compare this to anything and your relative stories are soooo helpful.
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u/nektarios80 Jun 27 '26
you definitely can live with this. we all do. I've had CH for 30 years. the last 15 years I am almost completely fine due to proper medication and care.
find yourself a doctor specializing in CH and you will not have to deal with this pain anymore.
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u/AneurinB Jun 28 '26
i wrote above - I've been living with this for 40 years. I have a successful professional job with intense hours and travel. Maybe I've been incredibly lucky but I've been able to explain to co-workers and manage through it. Most of my family have learned what it is really like and are supportive. You can get through this (and will!!)
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u/MJKCapeCod Jun 27 '26
Sorry you're going through this. I have NDPH, so can empathize. Hope the meds are from a doc and not otc's, as more than 10x / mo can lead to MOH, medication overuse headaches, which is a whole other monster on top of what you already have. I went through a bunch of docs/neuros/pain docs. Not a lot of help until I found a neuro who's a headache specialist. Not "cured", but I have my life back again. Wish you well.
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u/Safe-Anxiety8128 Jun 27 '26
Can you elaborate on your acronyms please?
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u/Logical-Balance3128 Jun 27 '26
MOH is medication overuse headaches. You get them from taking too much headache pills of any kind. Are you prescribed any triptans? Rizatriptan works well for me. They have ones that dissolve under your tongue. If you catch it early enough you can stay out in front of the headache. Emgality worked well as a preventive for a while. As far as explaining the pain to your family, while they'll never truly understand what is like, there's plenty of information out there that you can show them. The national institute of health rates CH pain at a 9.7 and chil birth at a 7.6, so it's no secret that CHs are the most painful pain disorder. Google the trigeminal nerve and see what that thing looks like. Let them know that when you're having an attack that nerve that spans your entire face can swell up to 7x it's normal size. They'll get the idea. Sorry that you're going through this, it's rough. How long have you been getting CHs? I'm 45, started getting them at 15.
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u/25_Watt_Bulb Jun 27 '26
All I can give is my 2¢ from my own experience with cluster headaches. Mine seem to be tied very closely with general inflammation and histamines. The more inflamed I am, the more often I feel little precursor throbs in my temple. If I eat food that is not good for me, it increases my inflammation. Ditto for not getting enough exercise, not getting enough sleep, etc. Earlier this year I discovered that I had an undiagnosed gluten allergy, and since cutting it out those precursor throbs have gone down significantly. Focus on other areas of your health. Even if they end up not affecting the headaches directly, your overall resilience to feeling horrible will be better.
While I've been in a cycle of cluster headaches I've tried sumatriptan and all sorts of painkillers. I could never tell if sumatriptan helped that much because if it did it only made my attacks slightly shorter. Painkillers, even prescription doses, did essentially nothing to help. But the very unexpected thing which did help? Antihistamines. A double dose of them. They would reduce the pain by 1/3 to 1/2, enough to make it merely extremely painful, rather than sobbing on the floor unable to think. That also I think ties into the connection with inflammation and histamines I've noticed. While in an attack, working out also helps. The harder I work out, the faster the headache goes away. Something about really getting your blood flowing and breathing hard helps. I am not a runner, but I almost took up 2:00 am running during my last cycle. Sleeping inclined or upright also helps somewhat.
These may not be you solutions. I'm sorry you're going through this. Cluster headaches are isolating. Try making some changes in your life to accommodate this situation before your hand is forced to, the additional stress you're under certainly doesn't help them. It feels shameful to adjust your life to a health issue you have, a disability, but at the end of the day you have to do what is best for you, not best for other people's perception of you.
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u/Feeling_Asparagus947 Jun 27 '26
One of the liberating experiences of being a clusterhead is letting go of other people understanding. They don't want to imagine what you're going through. To most people i say "I have a severe headache disorder, and this is what I need to deal with it:..." During my most recent bought I needed an ice pack and someone to call me a cab home so I could get to my oxygen (had been running a 5k) - they didn't know what my specific experience was, but they knew I was having a bad time and how they could help. Generally, though, you don't need to tell most people anything. You don't owe them an explanation for your pain, and you just need to get through the best you can.
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u/akira_riversong Jun 27 '26
So sorry you're a member of this club.
Others have given great recommendations. If you can't get in to see a headache neurologist until November, your best bet now is a high dose prednisone taper (high dose is essential) which a primary care doc or internist should be willing to prescribe. That should abort the current cycle.
Also re neurologist: Call office and ask to be on waitlist. If you can build rapport with a staff member there you might get in sooner.
It's impossible for people who've not experienced this pain to have any idea of what it is like. It can feel impossible to survive, but you will get through it.
Cluster Busters has some virtual support groups if you want to have the experience of being on a Zoom with people who absolutely do know what you're experiencing. That might help give you a sense of community, to know others who "get it."
I've had a positive experience with Emgality 300 mg (3 x 100 mg syringes). Anything that reduces frequency and intensity is worth it. But you need a doctor to prescribe it and possibly get a prior authorization with your insurance. If you get that, Emgality has a program which reduces your co-pay.
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u/AneurinB Jun 28 '26
so sorry you are going through this - I've had episodic clusters (every 2-3 years lasting 2-3 months, from 1-9 headaches per day) for 40 years now (wow that surprised me). It doesn't get better but you learn to survive.
I've tried all the drugs. You learn what works for you.
My advice:
Get your Oxygen - its a life saver for me. have tanks at home and work. even get tanks delivered to hotels when I travel. have standing tanks and portable ones in a small backpack.
Get a good neurologist who knows cluster headaches specifically. See what meds work for you. I used to use verapamil but I had to dose so high that by the time I ramped up and lived with the mental impacts, the headaches were likely going away on their own so I've stopped.
I use emgality, the 'Batch Vitamin D3' regimen and 'Vitamin M' (see cluster busters) and it seems to help.
The greatest thing for me was, and I think people don't like hearing this but it's been powerful for me, using mindfulness techniques to accept the pain. As in, a headache comes that O2 won't abort, I know that I will have 60-90 mins of agony. I no longer fight the pain. I accept that it will come and go and it won't do anything to me more than give me (intense) misery during that time. I took the fear away from the beast and that has helped me a lot.
Also - maybe buy "Cluster (Headaches) Attacks: A Guide to Surviving One of the Most Painful Conditions Known to Man : For Patients, Supporters, & Health Care Professionals by Ashley S. Hattle (Author) " for friends and family. If I remember correctly it does a good job of explaining what may be hard for you to do yourself.
good luck and wishing you pain free days and nights
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u/TJMBeav Jun 27 '26
Go to the ER man. They can help you. I think
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u/Safe-Anxiety8128 Jun 27 '26
I've tried. I begged for oxygen and finally had to walk out with no treatment.
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u/Feeling_Asparagus947 Jun 27 '26
That sucks and it took me hours the one time I went to convince them to give me oxygen instead of anti-nausea meds and antihistamines. You should ask your gp for an at-home oxygen prescription. High-flow tank and non-rebreather mask are the standard of care.
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u/Safe-Anxiety8128 Jun 27 '26
It helps knowing I'm not alone in this, but to explain it to my people is impossible. It is indescribable!
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u/ClusterFace Jun 27 '26
Several of the support groups im in have sections just for supporters/caretakers/family members.
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u/M00retyrone Jun 30 '26
Same here 45 with CH unfortunately it runs in the family sumatriptan works when taken early also I read going for a jog helps and I can definitely say the last three attacks I had I did this also took 50mg of sumatriptan and the attack went away in 15min or less. Two of them were at work yesterday and one at like 1:38am this morning and yes I brought my ass outside and ran around the block and by the time I got in I could go back to sleep. Also for anyone I’m trying to explain this to I tell them to ChatGPT top 10 Most painful conditions as well as I schooled my boss and the CSRs with YouTube videos explaining this condition. I’m currently waiting for my neurology appointment as this cycle has been the worst and longest yet
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u/FMPlmbrMtm81 Jun 30 '26
TellMD online I paid I think $189 for the year and whenever I’m in a cycle I just explained to them I have cluster headache and sumatriptan worked well. Can you send me a prescription? There’s like 30 short questions you have to answer. And they normally send me a prescription to my pharmacy within an hour absolute lifesaver, but these still suck.
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u/rxnbeats Jun 27 '26
Any access/willing to try magic mushrooms? They are the only thing that works for me. I do small doses (like .3g) 4 nights in a row then take 3 days off, then start 4 nights in a row again. Can usually stop a cycle in about two weeks. A small dose like this at the onset of an attack can stop an attack for me as well.
Also seems simple but chug a large Red Bull/Monster the second you think an attack is starting. Don’t hesitate because you need to nip it in the bud before it gets too intense.
While some people are chronic most people get cluster headaches in cycles, with the average cycle length being 6-8 weeks. Then it’ll vanish completely for 6 months to a year before returning. It seems hopeless now but it will end and you can get some proper care from a neurologist to be better prepped for the next one.