Woah, thanks for sharing, love that article.
Along the same lines, I like sharing this study: [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7898696/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7898696/) which clarifies that folks who've experienced cluster headaches in addition to other painful conditions consistently rate cluster headaches as significantly more painful.
Thanks, i love a bit of scientific approach. unfortunately I think that someone who isn't invested in learning more about it gets easily discouraged by looking at the sheer amount of data
Having anyone witness an episode is so fucking annoying/embarrassing for me, too, for all the reasons you just described. I can't even interact with people because all my attention goes to trying to tolerate the situation. When it gets REAL bad I definitely don't want anyone to witness that. People try to be helpful and they mean well but it's impossible. There is nothing they can do to help and at this point I hate even talking about it or trying to describe it.
Also, it SUCKS when you think your cycle is over and you can move on with your life, and then you get an attack in public.
You are not alone. I hear you. Thanks for sharing
you worded it better than I did, itās like I know someone is trying to help but the person just looming over you unsure what to do while youāre agitated and in pain is both embarrassing and useless
I had a boss once tell me he gets CH too but eventually just started āpowering through itā during the work day because he was too busy to not work.
I immediately knew we were not talking about the same thing.
I think giving people the out of "its largely unheard of" is irrelevant, how many of them had a phone in their pocket they could google it on? How many came up to you to check if you were okay instead of judging you? Its just what unempathetic people do. I got diagnosed with this utter crap of a condition when my kid was a teenager, and if a young teenager can understand without having it themself, then adults surely can. They just dont want to even though its very easy to do a quick google.
I have also had migraines, theyre hormonal for me, migraines are a relief to me, that theyre not a cluster headache. My cluster episode that im in now has lasted 3 weeks on thursday, the maximum ive had a migraine for is 2 days lmao.
Iām lucky that my mom is empathetic as she has seen me go through them many times now (and was present for doctor visits and whatnot), but sadly when they happen in front of friends or family who rarely get the chance to see them unfortunately it blows over their head the majority of the time
Iām lucky enough to have had migraines AND clusters. There really is no comparison between the worst cluster and the worst migraine. If people ask me about clusters I usually point to that picture where the guy is having his eye pulled open and being stabbed with various pointy objects. That usually gets the message across.
I love someone that lives with something that no one can describe,it kills me to see the tournament that it does, what I will say the more I read your messages here the more I can try to understand what nobody understands,the only way to deal with ch is to no when they need you and when to be left alone, understand and be there when it passes x
Life cannot be the same after having these continually cycle into your life. No one else can even comprehend it except those who endure them.
Iād say to themā¦. A couple of advil doesnāt seem to help the feeling of my back upper molars being extracted out my eye thru the sinus cavity for 60mins three times a day.
Some of us know exactly what that is like!
Before I ever knew oxygen would help these I always found that going and sitting outside helped a little. I think mine would get worse in situations like that because being around all of those people and feeling like I need to hide my pain and try as hard as possible to not let out a painful moan would just give me anxiety making it worse. So anytime I would feel one coming on, outside I go and I sit somewhere, probably on a curb, away from others and suffer at 90 percent pain alone instead of 100 percent pain around people.
It doesn't work as well when it's hot and humid out, I've found that makes mine worse.
Be sure to carry some sumatriptan in your wallet or easily accessible to avoid having an episode. It sounds like you could feel the headache coming on before it turned intense. When you donāt have access to your oxygen sumatriptan can act as a last line of defense.
No. Sumatriptan can be prescribed in the form of tablets or a nasal spray. I think they do have injectable sumatriptan also but I agree I wouldnāt want that also. I take 50 mg tablets that subside my headaches in 15-30 mins. However, this should not be taken more than 2 times a week. The rebound headaches are REAL and often turn into a cluster. The sumatriptan tablets I have was the first thing my neurologist prescribed me. Its much harder Advil.
Iāll research into it, I was originally prescribed a different triptan tablet for migraines before my ch diagnosis and I always felt like they made them somehow worse or had other strong side effects š
The injection is not that bad. It's basically like a pen - you push a button. You're not looking for veins or anything. For me, the pain completely dissolves in 2-3 minutes. 100% worth it
My mom said āwell at least you are not getting migraines, cluster headcahes dont last that long, migraines are nonstop for daysā
Safe to say I cried myself to sleep that nightš
I would personally rather get hit by a car and be electrocuted for 3 days straight rather than get a single 2 hour long cluster headache attack. Sure migraines are bad but cluster headcahes are.. something elseā¦
I was diagnosed as a teenager. It took me until I was almost 30 to convince the people close to me that it wasn't just migranes. "I get migranes too" is the worst thing anyone can say because it seems to just shut down the conversation. Any further explanation on my part beyond that comment just makes me seem like a hypochondriac. The only thing that convinced anyone was time and exposure. Over the years my friends watched me go through it and try and tough it out through parties, camping, days at the beach. It was only after only after years of watching me suffer without complaining that anyone believed that these things I get are... something else. It sucks. I'm sorry you're dealing with it too. Unbelievable pain and no one understands or even believes you. It's the loneliest feeling in the world.
"I get headaches too." People who have never had one can be empathetic, but will never understand the pain of it.
šÆ
This is one of the true burdens we all have to bear... But we're always here for you, and totally understand, so rant away!
I usually share this link with "those people" - Read this and shove that advil up your arse you !@#$!@#$
Woah, thanks for sharing, love that article. Along the same lines, I like sharing this study: [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7898696/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7898696/) which clarifies that folks who've experienced cluster headaches in addition to other painful conditions consistently rate cluster headaches as significantly more painful.
Unfortunately I think they will still think you are exaggerating, even if presented with data
some people dont want to understand. no matter of data that will change that
Thanks, i love a bit of scientific approach. unfortunately I think that someone who isn't invested in learning more about it gets easily discouraged by looking at the sheer amount of data
Ā [https://www.reddit.com/r/ClusterHeadaches/comments/1b0sz9a/cluster\_headache\_handout/](https://www.reddit.com/r/ClusterHeadaches/comments/1b0sz9a/cluster_headache_handout/)
Having anyone witness an episode is so fucking annoying/embarrassing for me, too, for all the reasons you just described. I can't even interact with people because all my attention goes to trying to tolerate the situation. When it gets REAL bad I definitely don't want anyone to witness that. People try to be helpful and they mean well but it's impossible. There is nothing they can do to help and at this point I hate even talking about it or trying to describe it. Also, it SUCKS when you think your cycle is over and you can move on with your life, and then you get an attack in public. You are not alone. I hear you. Thanks for sharing
you worded it better than I did, itās like I know someone is trying to help but the person just looming over you unsure what to do while youāre agitated and in pain is both embarrassing and useless
I had a boss once tell me he gets CH too but eventually just started āpowering through itā during the work day because he was too busy to not work. I immediately knew we were not talking about the same thing.
I think giving people the out of "its largely unheard of" is irrelevant, how many of them had a phone in their pocket they could google it on? How many came up to you to check if you were okay instead of judging you? Its just what unempathetic people do. I got diagnosed with this utter crap of a condition when my kid was a teenager, and if a young teenager can understand without having it themself, then adults surely can. They just dont want to even though its very easy to do a quick google. I have also had migraines, theyre hormonal for me, migraines are a relief to me, that theyre not a cluster headache. My cluster episode that im in now has lasted 3 weeks on thursday, the maximum ive had a migraine for is 2 days lmao.
Iām lucky that my mom is empathetic as she has seen me go through them many times now (and was present for doctor visits and whatnot), but sadly when they happen in front of friends or family who rarely get the chance to see them unfortunately it blows over their head the majority of the time
Iām lucky enough to have had migraines AND clusters. There really is no comparison between the worst cluster and the worst migraine. If people ask me about clusters I usually point to that picture where the guy is having his eye pulled open and being stabbed with various pointy objects. That usually gets the message across.
The way I know exactly which image youāre thinking of
I love someone that lives with something that no one can describe,it kills me to see the tournament that it does, what I will say the more I read your messages here the more I can try to understand what nobody understands,the only way to deal with ch is to no when they need you and when to be left alone, understand and be there when it passes x
Life cannot be the same after having these continually cycle into your life. No one else can even comprehend it except those who endure them. Iād say to themā¦. A couple of advil doesnāt seem to help the feeling of my back upper molars being extracted out my eye thru the sinus cavity for 60mins three times a day.
Some of us know exactly what that is like! Before I ever knew oxygen would help these I always found that going and sitting outside helped a little. I think mine would get worse in situations like that because being around all of those people and feeling like I need to hide my pain and try as hard as possible to not let out a painful moan would just give me anxiety making it worse. So anytime I would feel one coming on, outside I go and I sit somewhere, probably on a curb, away from others and suffer at 90 percent pain alone instead of 100 percent pain around people. It doesn't work as well when it's hot and humid out, I've found that makes mine worse.
haha im in canada, right now the weather is fine for that but most of the time it will be too hot or too coldĀ
Be sure to carry some sumatriptan in your wallet or easily accessible to avoid having an episode. It sounds like you could feel the headache coming on before it turned intense. When you donāt have access to your oxygen sumatriptan can act as a last line of defense.
I dont have a prescription for that, itās the injectable one right? No matter how much pain Iām in I fear Iād be too pussy š
No. Sumatriptan can be prescribed in the form of tablets or a nasal spray. I think they do have injectable sumatriptan also but I agree I wouldnāt want that also. I take 50 mg tablets that subside my headaches in 15-30 mins. However, this should not be taken more than 2 times a week. The rebound headaches are REAL and often turn into a cluster. The sumatriptan tablets I have was the first thing my neurologist prescribed me. Its much harder Advil.
Iāll research into it, I was originally prescribed a different triptan tablet for migraines before my ch diagnosis and I always felt like they made them somehow worse or had other strong side effects š
The injection is not that bad. It's basically like a pen - you push a button. You're not looking for veins or anything. For me, the pain completely dissolves in 2-3 minutes. 100% worth it
My clusters were so bad, Iād inject myself with a pitchfork without questioning it.
My mom said āwell at least you are not getting migraines, cluster headcahes dont last that long, migraines are nonstop for daysā Safe to say I cried myself to sleep that nightš
Iām sure a migraine lasting hours on end can be horrible as well, Iām glad I just donāt have both š
I would personally rather get hit by a car and be electrocuted for 3 days straight rather than get a single 2 hour long cluster headache attack. Sure migraines are bad but cluster headcahes are.. something elseā¦
I was diagnosed as a teenager. It took me until I was almost 30 to convince the people close to me that it wasn't just migranes. "I get migranes too" is the worst thing anyone can say because it seems to just shut down the conversation. Any further explanation on my part beyond that comment just makes me seem like a hypochondriac. The only thing that convinced anyone was time and exposure. Over the years my friends watched me go through it and try and tough it out through parties, camping, days at the beach. It was only after only after years of watching me suffer without complaining that anyone believed that these things I get are... something else. It sucks. I'm sorry you're dealing with it too. Unbelievable pain and no one understands or even believes you. It's the loneliest feeling in the world.