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.

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

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.

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 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

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.)

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. 

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

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.

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. 

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


  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

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