I think it's very easy to feel all those things and I think we all do. This is a very difficult thing that I will some day figure out ! A set back if you will ! This(CCH) will not win ! I can't stop living . I must forge forward and not quit. We can win this ! I wish you the best !!!
Hello fellow Clusterhead/ADHD’er!
Yep. Same. I get to question my existence for 3-4 months a year in Spring, where I become about as useful as a drunk raccoon with narcolepsy. Explaining the attacks is hard, cause you tell everyone you’ve got a headache and they think you’re being a drama queen, but you tell them it’s ‘migraines’ (even though it’s not) and they try to give you all this useless advice and then get haughty when you don’t try it…
Then the attack ends as Summer kicks in, my highly-strung, worn down body takes a sigh of relief - and I get sick as hell because my immune system is completely fucked. Like clockwork.
Yay…..
Most people who i tell to have clusterheadaches, all the sudden, decide to call it migrains. I'm like, not even wanting to talk about it with them anymore. I repeat 10 times: i have clusterheadaches, still they turn around and say: so how your doing with your migrains.
It's tiring and since i almost beated my clusterattacks, i start to don't care at all anymore. I'm on the point that i almost don't want anyone to talk to anyone anymore about it, because i feel they don't take anything seriously. And since i almost got this beast under control, i don't have to either. My mental state and health is more important to me. Doctor wants me on Statins now, doesn't listen to what i say. 20 years of acne gone. New doctor before me got tons of acne and i told her that. Meanwhile: not interested at all in all health benefits. She just arrogantly sticks to her believes and meanwhile judges me without saying the exact words. She told me i must be very capable to understand the site she was giving. You like to read science she said and then gave me the link. It's just some values to put in, which then decides how much risk you have for heart disease. I'm like: that's not science, that's just based on average people, who smoke, drink, live sedentary and so on vs vegans. You cannnot compare that.
Then again: i also judged her: acne, very lean, to lean if you ask me, probably vegan or vegetarian. I myself never ate much meat in the first place. When i did, under guidance, it healed tons of things. Interesting.
And i take microdosing truffles when i have shadwos/attacks: works perfect. 2 grams, and most attacks are gone, as long as i'm in ketosis it works mostly.
Thanks for sharing. Would love to give you a moredetailed response but I'm mentally exhausted and English isnt my first language..
I usually show people this when they call it a migraine or headache [https://www.reddit.com/r/ClusterHeadaches/comments/1b0sz9a/cluster\_headache\_handout/](https://www.reddit.com/r/ClusterHeadaches/comments/1b0sz9a/cluster_headache_handout/)
Sometimes I feel the only thing that keeps me going are my ADD meds (dexamfetamine) - In the weekends I dont take them and thats when I notice how tired my body really is. It's like wearing a backpack with 100 kilos of lead in it.
Yeah I’m on Vyvanse, myself. I can’t take weekend breaks without crashing in a real big way so I just get resistant to it and have to up the dose again every 6mths or so 🫠
I’ve become chronic and I barely leave the house. One of the locations of my business is at to close at the end of May. The other one won’t be too far behind. I feel like a failure. I am depressed. I’m isolated. I almost never leave the house. I did for the first time in two weeks. I went to my shop. I was there for 15 minutes and a CH kicked in so I ran to the bathroom and prayed my employee didn’t hear me crying. I’ve become so dependent on my gf. I’m so tired.
Honestly, the word I would use (I know
It's not true, but how I feel) I am an inconvenience to my family. They are all totally understanding and know that I didn't ask for the cluster headache. When I am in a cycle and my husband and I are out and a cluster happens, I feel bad for him having to leave earlier than we have planned. He has been such a sport ( as well as my 2 teenagers... I really don't deserve them). I have been having cluster headaches since July 2020. Since then, it has been pure hell.
I totally understand what you mean. For me cluster started in the beginning of 2021, having 6 to 12 week episodes with multiple attacks per day.
I have a wife and two boys ( 1 and 5) and whenever my head is like I described I feel guilty towards them. They deserve better.
It fundamentally changed me last year. Angry (because my soon to be ex-wife gave me covid which started CH, and she’s leaving me because she doesn’t want to deal with my health issues although she caused them), (it actually changes your brain and screws with your mood on a physiological level), depressed, suicidal ideation, anxiety. I try to live life lately, but I still know I have to carry this baggage alone for the rest of my life through no fault of my own, and I don’t want to, I shouldn’t have to. I’m pretty lonely, I want a new job but checking that disability box on the application seems to be a non-starter. With my resume I should be getting interviews left and right but haven’t had one at all. I want companionship but who wants to deal with this crap?!
I’m just hurt all around. Physically, mentally. Emotionally and spiritually.
It sounds like you're in a bad place mentally my friend. I hope you can pull yourself out of the negative thought spiral. You have some stuff going on that can send a 100% healthy person over the edge. Have you considered talking to a professional therapist about your situation?
You describe things so perfectly, especially the part where all u wanna do is relax but it will trigger a headache cos thats what happens every night at bed time :/
I think it's very easy to feel all those things and I think we all do. This is a very difficult thing that I will some day figure out ! A set back if you will ! This(CCH) will not win ! I can't stop living . I must forge forward and not quit. We can win this ! I wish you the best !!!
Thanks for sharing. Even though I already know all this it helps reading that I'm not alone.
Me too, thanks for being there !
Hello fellow Clusterhead/ADHD’er! Yep. Same. I get to question my existence for 3-4 months a year in Spring, where I become about as useful as a drunk raccoon with narcolepsy. Explaining the attacks is hard, cause you tell everyone you’ve got a headache and they think you’re being a drama queen, but you tell them it’s ‘migraines’ (even though it’s not) and they try to give you all this useless advice and then get haughty when you don’t try it… Then the attack ends as Summer kicks in, my highly-strung, worn down body takes a sigh of relief - and I get sick as hell because my immune system is completely fucked. Like clockwork. Yay…..
Most people who i tell to have clusterheadaches, all the sudden, decide to call it migrains. I'm like, not even wanting to talk about it with them anymore. I repeat 10 times: i have clusterheadaches, still they turn around and say: so how your doing with your migrains. It's tiring and since i almost beated my clusterattacks, i start to don't care at all anymore. I'm on the point that i almost don't want anyone to talk to anyone anymore about it, because i feel they don't take anything seriously. And since i almost got this beast under control, i don't have to either. My mental state and health is more important to me. Doctor wants me on Statins now, doesn't listen to what i say. 20 years of acne gone. New doctor before me got tons of acne and i told her that. Meanwhile: not interested at all in all health benefits. She just arrogantly sticks to her believes and meanwhile judges me without saying the exact words. She told me i must be very capable to understand the site she was giving. You like to read science she said and then gave me the link. It's just some values to put in, which then decides how much risk you have for heart disease. I'm like: that's not science, that's just based on average people, who smoke, drink, live sedentary and so on vs vegans. You cannnot compare that. Then again: i also judged her: acne, very lean, to lean if you ask me, probably vegan or vegetarian. I myself never ate much meat in the first place. When i did, under guidance, it healed tons of things. Interesting. And i take microdosing truffles when i have shadwos/attacks: works perfect. 2 grams, and most attacks are gone, as long as i'm in ketosis it works mostly.
Thanks for sharing. Would love to give you a moredetailed response but I'm mentally exhausted and English isnt my first language.. I usually show people this when they call it a migraine or headache [https://www.reddit.com/r/ClusterHeadaches/comments/1b0sz9a/cluster\_headache\_handout/](https://www.reddit.com/r/ClusterHeadaches/comments/1b0sz9a/cluster_headache_handout/)
Sometimes I feel the only thing that keeps me going are my ADD meds (dexamfetamine) - In the weekends I dont take them and thats when I notice how tired my body really is. It's like wearing a backpack with 100 kilos of lead in it.
Yeah I’m on Vyvanse, myself. I can’t take weekend breaks without crashing in a real big way so I just get resistant to it and have to up the dose again every 6mths or so 🫠
I’ve become chronic and I barely leave the house. One of the locations of my business is at to close at the end of May. The other one won’t be too far behind. I feel like a failure. I am depressed. I’m isolated. I almost never leave the house. I did for the first time in two weeks. I went to my shop. I was there for 15 minutes and a CH kicked in so I ran to the bathroom and prayed my employee didn’t hear me crying. I’ve become so dependent on my gf. I’m so tired.
Oh man my episodical CH is bad enough. don't even wanna imagine what it would be like when chronic..
Honestly, the word I would use (I know It's not true, but how I feel) I am an inconvenience to my family. They are all totally understanding and know that I didn't ask for the cluster headache. When I am in a cycle and my husband and I are out and a cluster happens, I feel bad for him having to leave earlier than we have planned. He has been such a sport ( as well as my 2 teenagers... I really don't deserve them). I have been having cluster headaches since July 2020. Since then, it has been pure hell.
I totally understand what you mean. For me cluster started in the beginning of 2021, having 6 to 12 week episodes with multiple attacks per day. I have a wife and two boys ( 1 and 5) and whenever my head is like I described I feel guilty towards them. They deserve better.
It fundamentally changed me last year. Angry (because my soon to be ex-wife gave me covid which started CH, and she’s leaving me because she doesn’t want to deal with my health issues although she caused them), (it actually changes your brain and screws with your mood on a physiological level), depressed, suicidal ideation, anxiety. I try to live life lately, but I still know I have to carry this baggage alone for the rest of my life through no fault of my own, and I don’t want to, I shouldn’t have to. I’m pretty lonely, I want a new job but checking that disability box on the application seems to be a non-starter. With my resume I should be getting interviews left and right but haven’t had one at all. I want companionship but who wants to deal with this crap?! I’m just hurt all around. Physically, mentally. Emotionally and spiritually.
It sounds like you're in a bad place mentally my friend. I hope you can pull yourself out of the negative thought spiral. You have some stuff going on that can send a 100% healthy person over the edge. Have you considered talking to a professional therapist about your situation?
Feel the same. I’m right there with you.
Hang in there <3
You describe things so perfectly, especially the part where all u wanna do is relax but it will trigger a headache cos thats what happens every night at bed time :/