I know this is selfish of me and possibly offensive to people actually suffering from cluster headaches. I'm so sorry for bothering you guys. I just don't know what to do and I'm scared and I know I'm crazy.

My sister gets cluster headaches, and she has for years. She's hidden most of the attacks, but I know they're excruciating and again, how dare I even THINK I deserve help when she suffers so much? I don't get them (yet)... But part of me is just waiting for them to happen. I'm 30, and female. I know it could happen. And it's not even that that bothers me the most.

I've researched EVERYTHING I can find. I've read medical journals and forums and everything in between. It drives me crazy when people confuse clusters with migraines or minimize the pain. But... I think it goes farther than that now. I don't feel like I deserve to live when other people like you are in so much pain. I don't deserve to be happy when others suffer so much. I'm usually exhausted because I have nightmares about clusters and wake up in a cold sweat a few times a week. (Again, how dare I complain that I wake up without pain?!)

And... lately during the day I think about how much suffering is happening and how hardly any professionals are doing anything about it. I know it's not logical but the only way I can alleviate my guilt is by causing myself pain. This is embarrassing and gross, I know... but sometimes I feel like I can't breathe unless I lock myself in the bathroom at work and hit myself until I leave bruises. I know that's nothing. Everything is nothing. So then I... (Again this is gross) I guess I've always self injured, but lately when I cut myself I don't stop until I almost need stitches, and then I pour bleach or nail polish remover in the cuts because I need to punish myself for not having CH. Why does someone worthless like me not suffer like braver people like you? And I'm not allowed to cry even when I burn myself with lighters and stuff because that's nothing compared to my sister's pain. Or yours.

I don't know who to tell. Some people haven't even heard of cluster headaches and anyway, they're baffled about why I care so much. I don't know what to do. I don't know how to make up for this. I know hurting myself is weird but if I don't, the guilt makes me want to die. The unfairness of this all makes me want to die. I'm so tired but if I close my eyes the nightmares start. I can't tell my friends. And even my sister, who HAS cluster headaches, seems to think this is weird. I guess she wants me to look up "intrusive thoughts" but that will never make up for your pain.

I guess I wonder... it seems like a lot of you seem relatively content despite all this awful pain. I have nothing but respect, but it also blows my mind. How on earth do you deal with it? Is life worth living anyway? I wish I could make cluster headaches go away.

I wish I could make myself go away. :( well, crying like a pathetic girl now so I guess it's time to go to sleep. I just wish the nightmares would stop

You can delete this. I hope this doesn't make anyone mad. I just can't stop thinking about cluster headaches and I can't eat and I can't sleep and no matter how much I hurt myself, it's not enough to make up for your pain, and I'm sorry. I don't know how to make this stop. I'm just so tired and everything hurts but not as much as I deserve and I know deep down, all the cutting and burning myself won't help anyone else, and that makes me so sad and I'm so sorry and I will leave you alone now. :( I am pathetic.

G'day, Oh Well, and welcome. You're what we call a Supporter and all of our supporters are gold.

We love 'em dearly!

Supporters are the people who stand by us through this madness and help us in so many many ways. Mostly it's the big stuff like making sure our medication is correct, getting our oxygen happening, saving us from ourselves.

Often it's just the littlest things like protecting our personal space, keeping up the ice packs and coffee, or simply being there when we need your strength.

We welcome you as a Supporter and one of the really good things you can do is learn as much as you can so as to help her every inch of the way. You can do so much to make her life so much better and that's why we love supporters like you.

Ask all the questions you like, because we're only too happy to help a supporter who wants to support one of our cluster buddies.

Welcome home.

Hello Oh Well.

What Brian says about supporters is spot on. Our supporters are the ones  that keep us together, keep us real.

Nobody who supports a Cluster Head should underestimate the value of the support they give and certainly Never consider their support worthless.

If you could give us some information about your sister's treatment to date, in terms of medications, both abortives and preventatives, we may be able to offer advice on some potential alternative approaches to her dealing with her CH.

Of course, you must feel comfortable that you are not breaking any confidences.

Keep supporting and keep posting here.

Peter.

Hi oh well,
              I second what aussiebrian and peter had to say.
There's no reason for you to feel guilty in any way at all.
   You are full of empathy and caring for someone close to you that suffers from cluster headaches and also very important to her as a supporter !
We cluster head sufferers value those who support us more than anything else, there importance they probably don't realise themselves.
Stick around a little while "oh well"  there's lots to learn about and maybe you could introduce your sister to us, she will be right at home here with us,  we understand !
  As aussiebrian sais " our supporters are like gold"
  and your one of them,  thankyou

regards
colin

Welcome Oh well
Please stop hurting yourself. You clearly love your sister very much but I'm sure she would be devastated if she knew what YOU are going through. Her CH is not your fault and the best way to help her is to be positive and strong. She needs you as much as we all need our supporters, but you need her too.

When people minimize her pain or confuse it with migraine you have to just ignore them because they know nothing, but be thankful for them that they will probably never know. Worrying about other people is a waste of your energy and doesn't help your sister.

Don't wait for CH to happen to you. It might, but it probably won't. But if it does you will deal with it as we all do.  Every one in the world has a cross to bear. For us it's clusters, but there are people far worse off than us. Soldiers who have lost all their limbs, children with cancer, the list goes on.

We are content despite the pain and yes our lives are worth
living, as is yours. CH is only a tiny part of our lives. It's not the whole of us. And it's a tiny part that for the most part we can push into the background and get on with the much bigger things that we love.

If you have love in your heart for another person, your sister, then your life is never worthless, and you don't deserve to suffer just because she does. The guilt is not yours.

You have made the right move by coming here because now you DO have someone to tell. Tell us about your sister and what treatment she has had so far. There is plenty that helps to make this condition bearable, and we can help her. Bring her along to this site.

You are doing all you can to help your sister, but please help yourself too. Please talk to someone who can help with your feelings, and your sister will benefit too.

Come back and let us know how you are.
Maz.

I'm writing to you as a retired psychotherapist.

Urge you to find a good therapist to help you with urges which YOU recognize as not healthy or normal.

Shame and hiding from people only reinforces your feelings, so please take care of yourself NOW.

Hi and welcome.

First off, there is no reason at all why this should be deleted.

The last thing in the world that anyone with CH would want is for someone else, especially someone close to them to have CH. Well maybe I'd make an exception for some doctors and those who fund things to experience a single CH (which would make all the difference in the world to some of them).

There is no reason that you should feel guilty and hurt yourself. Your sister would never want you to be doing this. I'd strongly suggest that you follow Bob's suggestion and you find a good therapist to help you with this.

Our lives are very much worth living. Whilst here we post mainly about the times our heads aren't working right, there is plenty of time when they are, so we make a point of living between the CHs and between the cycles.

You'll see posts from people with loving families, fun holidays, enjoyable hobbies, fulfilling jobs and more. We are people who get (or support) CH, this does not define us, the rest of our lives are what defines us.

JWow, you guys. I read this first thing when I woke up and started crying (I cry easily, ha) because I was not expecting this. Thank you so so much.

It's hard because my sister and I are not that close. I mean, we want to be, but we grew up in a dysfunctional family that doesn't even hug and now we live in different cities. :( I think she would be kind of weirded out/annoyed if I tried to be a "supporter" in the physical sense, and luckily she has people who are actually close to her who do help. And she does have a really fulfilling life and a lot of friends, so I guess deep down I know it's possible to have clusters and want to live. It's just hard to imagine wanting to live with them since frankly I kind of want to die half the time anyway. :( I have a therapist, sort of, but I'm afraid to talk about this for some reason.

AussieBrian, I don't know how often you say "welcome home" on this board but I hope it's all the time (I imagine it is) because that made me feel so happy for some reason...

Peter, I believe my sister takes topamax, or she did last time I checked. I don't think she takes triptans but I'm not sure if she's tried them. I know she took Vicodin in the past but I also know it's pretty useless... and she got addicted. Not sure about prednisone. Possibly oxygen? She is aware it exists, anyway. Vitamin D, probably not. She says mushrooms don't work for her; I don't know if she's tried LSD. For headaches, that is. I worry about her taking hallucinogens because moderation isn't her thing and one of the last times she took shrooms, she tried to dig a hole to China and then fell asleep on a tractor.

Blacklab, thank you so much.

Maz, you are right. i try not to sound or act too crazy around her so she doesn't have to deal with that too, although I slip sometimes. And I suppose you are also right about the soldiers, and the children with cancer... I don't know why I can't keep that in perspective. I definitely admire your outlook. And it makes me really happy to hear that you can have a good life despite this.

Bob, yes, you're right. I'm in therapy for other reasons but I'm not sure how to bring this up because I'm kind of ashamed of feeling this way... but even if I can't do it for me, I think I'm starting to drive other people crazy and that makes me feel bad too. And if I take a step back, i can kind of see why... I guess.

Edit: Mike, you are right. And that makes me very happy to hear. Thank you. :) (I wish some doctors would get one too, btw. Just once of course.)

//

A very abbreviated list of reasons people avoid me

Me: you know they say cluster headache pain is the worst thing in the world.
Sister: mmhmm
Me: so that means it must be worse than... than... getting water boarded with gasoline and then having someone set the gasoline on fire?
Sister: ...
Me: so that means that it is LESS painful to drown in fire?
Sister: what the hell is wrong with you


Me: have you heard of cluster headaches?
Coworker: yeah, I know someone who gets them
Me: are you sure? They're really rare and they're not migraines and you don't get just one and they're the worst pain in the-
Coworker: yes, I'm sure. His eye tears up and they happen every day and you're not the only one who can use Wikipedia

Me: they say it's worse than amputating limbs without anesthetic
Sister: okay
Me: do you think that's an educated guess or does that happen a lot? Like you go to get an operation and the anesthetic wears off and you can feel everything ?
Sister: no
Me: well what if there are like... surgeons who go rogue and just cut you up while you're awake?
Sister: stop
Me: ok ok one more thing. If everyone says clusters hurt worse, does that mean that someone with clusters also got his legs cut off without anesthetic? That's horrible. Oh no, oh no; I mean he has enough problems without the amputation-
Sister: *logs off messenger*

Me: Has [sister] tried anticonvulsants? [not topamax]  Like mood stabilizers? There's some evidence that they help. I think they're pretty safe since I've been taking them so long
Mom: when was the last time you took yours?

Coworker, through bathroom door: are you sick?
Me: can't breathe did you know that they used to lock people in asylums for having cluster headaches oh god can you imagine being tied down and oh god I can't stop thinking about it
Coworker: please take a Xanax
Me: I TOOK THREE

Hi OhWell,
               Thanks for returning.
The one thing I can say, Never Never be ashamed in the way your feeling !  From what I'm reading there's nothing to feel ashamed about.
Sometimes its hard to open up to express feelings to someone, even to someone professionally trained in that field, Hey, I know that, I'm a male  ;D You know, that old stereotype thing !!
But hopefully you can, as Bob mentioned bring yourself to discuss this with your therapist,  We cant have one of our supporters hurting them selves, or feeling the way you do ! there too important.
Glad to see you back here though Oh Well !
You are amongst friends here....
kindest regards
colin

Hi and welcome,
Reading through your posts it would seem to me that
your sister has lots of support already. So, I would suggest you talk with her about getting in touch with a Headache Specialist in the city where she lives, so as to get the treatment she needs for her CH's. Then this will also help you from worrying all the time, and at the same time get your life back on track. Also, stop worrying that your going to get this disease, I doubt very much that
this will happen too you.

Hoppy

Oh well wrote on Jul 17^th, 2015 at 5:10pm:

JWow, you guys. I read this first thing when I woke up and started crying (I cry easily, ha) because I was not expecting this. Thank you so so much. It's hard because my sister and I are not that close. I mean, we want to be, but we grew up in a dysfunctional family that doesn't even hug and now we live in different cities. :( I think she would be kind of weirded out/annoyed if I tried to be a "supporter" in the physical sense, and luckily she has people who are actually close to her who do help. And she does have a really fulfilling life and a lot of friends, so I guess deep down I know it's possible to have clusters and want to live. It's just hard to imagine wanting to live with them since frankly I kind of want to die half the time anyway. :( I have a therapist, sort of, but I'm afraid to talk about this for some reason. AussieBrian, I don't know how often you say "welcome home" on this board but I hope it's all the time (I imagine it is) because that made me feel so happy for some reason... Peter, I believe my sister takes topamax, or she did last time I checked. I don't think she takes triptans but I'm not sure if she's tried them. I know she took Vicodin in the past but I also know it's pretty useless... and she got addicted. Not sure about prednisone. Possibly oxygen? She is aware it exists, anyway. Vitamin D, probably not. She says mushrooms don't work for her; I don't know if she's tried LSD. For headaches, that is. I worry about her taking hallucinogens because moderation isn't her thing and one of the last times she took shrooms, she tried to dig a hole to China and then fell asleep on a tractor. Blacklab, thank you so much. Maz, you are right. i try not to sound or act too crazy around her so she doesn't have to deal with that too, although I slip sometimes. And I suppose you are also right about the soldiers, and the children with cancer... I don't know why I can't keep that in perspective. I definitely admire your outlook. And it makes me really happy to hear that you can have a good life despite this. Bob, yes, you're right. I'm in therapy for other reasons but I'm not sure how to bring this up because I'm kind of ashamed of feeling this way... but even if I can't do it for me, I think I'm starting to drive other people crazy and that makes me feel bad too. And if I take a step back, i can kind of see why... I guess. Edit: Mike, you are right. And that makes me very happy to hear. Thank you. :) (I wish some doctors would get one too, btw. Just once of course.) // A very abbreviated list of reasons people avoid me Me: you know they say cluster headache pain is the worst thing in the world. Sister: mmhmm Me: so that means it must be worse than... than... getting water boarded with gasoline and then having someone set the gasoline on fire? Sister: ... Me: so that means that it is LESS painful to drown in fire? Sister: what the hell is wrong with you Me: have you heard of cluster headaches? Coworker: yeah, I know someone who gets them Me: are you sure? They're really rare and they're not migraines and you don't get just one and they're the worst pain in the- Coworker: yes, I'm sure. His eye tears up and they happen every day and you're not the only one who can use Wikipedia Me: they say it's worse than amputating limbs without anesthetic Sister: okay Me: do you think that's an educated guess or does that happen a lot? Like you go to get an operation and the anesthetic wears off and you can feel everything ? Sister: no Me: well what if there are like... surgeons who go rogue and just cut you up while you're awake? Sister: stop Me: ok ok one more thing. If everyone says clusters hurt worse, does that mean that someone with clusters also got his legs cut off without anesthetic? That's horrible. Oh no, oh no; I mean he has enough problems without the amputation- Sister: *logs off messenger* Me: Has [sister] tried anticonvulsants? [not topamax]  Like mood stabilizers? There's some evidence that they help. I think they're pretty safe since I've been taking them so long Mom: when was the last time you took yours? Coworker, through bathroom door: are you sick? Me: can't breathe did you know that they used to lock people in asylums for having cluster headaches oh god can you imagine being tied down and oh god I can't stop thinking about it Coworker: please take a Xanax Me: I TOOK THREE

  Three Xanax could kill ya.

              Potter

Try this: copy your reply to me and hand it to your therapist. I'm serious!

Feeling such a barrier with your therapist will keep you from finding the relief you're seeking.

(If it would be comfortable to write about this, click on the PM buttom at the bottom of this message. That will let you send me an e-mail.)

Really Potter?  This is why some people take offense to you. Out of ALL the things she said you want to copy her entire post, highlight a small portion and put your two cents in.  You can come across as being very rude and uncaring. I understand you love to be succinct, but sometimes matters call for a little bit more finesse.

After my first post you did offend me greatly and I almost stopped coming here until I had a few individuals reach out to me through email. 

This is a delicate newcomer and needs support and positive thoughts sent her way, not someone telling her something she already knows and making her feel bad about it.

I can be just as long winded and big hearted as you can be succinct.

Kayley

P.S. Feel free to copy my post and respond how you normally do, but I won't be responding or replying. I've said what I had to say and now I'm done.

Potter wrote "Three Xanax could kill ya"

Potter, please google 'xanax overdose' before embarrassing yourself further.

We're trying to help and you're not helping. 

AussieBrian wrote on Jul 18^th, 2015 at 11:20am:

Potter wrote "Three Xanax could kill ya" Potter, please google 'xanax overdose' before embarrassing yourself further. We're trying to help and you're not helping.

Ain't my first rodeo cowboy.

  What happens if I overdose?

Seek emergency medical attention or call the Poison Help line at 1-800-222-1222. An overdose of Xanax can be fatal. Overdose symptoms may include extreme drowsiness, confusion, muscle weakness, loss of balance or coordination, feeling light-headed, and fainting.

Who's embarrassed themselves now Brian?

             Potter

Brian - I did Google, like you suggested, and I surprised myself. I almost always Google things before I type so I can have as much varied information as possible.

And that old saying is true....you do learn something new every day!  Today I learned that YES you can overdose on Xanax. Every person is different in their reactions with medications.  HOWEVER the dosage would have to be high. Extremely high. And people are known to take up to 1000 times the daily limit and be ok. 

Just thought I would pass that info along so we can move pass the Xanax issue and avoid anyone any further embarrassment.

Kayley

KayleyKat wrote on Jul 18^th, 2015 at 11:13am:

Really Potter?  This is why some people take offense to you. Out of ALL the things she said you want to copy her entire post, highlight a small portion and put your two cents in.  You can come across as being very rude and uncaring. I understand you love to be succinct, but sometimes matters call for a little bit more finesse. After my first post you did offend me greatly and I almost stopped coming here until I had a few individuals reach out to me through email.  This is a delicate newcomer and needs support and positive thoughts sent her way, not someone telling her something she already knows and making her feel bad about it. I can be just as long winded and big hearted as you can be succinct. Kayley P.S. Feel free to copy my post and respond how you normally do, but I won't be responding or replying. I've said what I had to say and now I'm done.

Good onya.

                      Potter

Really Potter, you have me completely baffled.

Sometimes your posts can be so helpful, and in others you can behave like a damn fool.

Unfortunately, on this occasion there is NO question about the sincerity of the originator and some delicacy is definitely needed, but you can't seem to tell the differefence.

Empathy is a great skill.

Peter.

Again, darlin', welcome to ch.com. As you've seen there are many of us here and so many different opinions.

So many ways of trying to help someone who must deal with the monster we call CH.

I urge you to read everything and accept what you like, while putting the rest in the trash where it belongs. My posts included if they're no help in your journey.

Please try to hang in and find some sense within the mess you're facing. CH ain't pretty but some of us can find a smile.

Bestest always and ever,

Brian down under.

Welcome to Clusterville and we're here to help in any way we can. I think Bob is spot on with you. sometimes talking these things out helps more than modern medicine.

And don't get upset about Potter.. those of us who've been here forever love him like he is and know he's not the grouch he comes across as most of the time. He's our Donald Trump of Clusterville..  :)

But remember we're here to help in any way we can and we're open 24/7.  :-*

I'm still here, guys! I will reply to your lovely messages as soon as I can. :) My roommate broke the Internet.

Oh well wrote on Jul 19^th, 2015 at 12:29pm:

I'm still here, guys! I will reply to your lovely messages as soon as I can. :) My roommate broke the Internet.

  You've been checking on this post numerous times throughout the day so obviously your internet is working.  What exactly can we do for you?

  Listen to what Bob Johnson has to say.  He's a font of valuable knowledge.

                Potter

Potter,
maybe she is just lonely and needs someone to talk to.

Mark.

Oh well,
Just come back when you're ready. We're always here - 24/7

I've felt pretty terrible for not coming back and responding, but immediately after this I got a new therapist and she suggested maybe I should take a break from this forum. I hope I didn't offend anyone by not responding right away, because that was rude of me.

I can't even begin to tell you how much your words meant to me. Yes, Potter, even you.  :P You all did exactly what you could do for me. And yes, I was checking the thread throughout the day - on my phone at work. I'm not great at typing on it. Anyway, never mind that. I eventually just hauled my crazy self off to the hospital and stayed in the psych ward for awhile, because this wasn't healthy and thinking about how total strangers could be so nice to me really made me rethink my position on life. (i.e. i wished it would end.) I feel way better after getting out of the hospital and finally ok enough to post here again.

I can't thank you enough for being so nice to me, so I have attached an air hug. :)

---

Great to see ya back Erin !
And thanks for the air hug   ;D
Its good to hear you took some time out to get yourself sorted and back on track.
A lot of good people, as you've seen, Here to help/ support or just be here as a friendly ear.
Don't be a stranger !

colin

Good to see that things are on the up for you Erin. May they continue to improve too.

Thank you for writing back! I would like to not be a stranger, if you'll have me. :)

Oh well wrote, Thank you for writing back! I would like to not be a stranger, if you'll have me.
Your always more than welcome here! That's what were here for.  :)

Hoppy.

You will never be a stranger to us Oh well. Your with family now.

Well, I'm very lucky to have such a lovely family now.  :)