Hello to to all. I have been chronic for 18 years from Indiana. I am married with 3 kids, 17 yr old girl, 15 yr old boy and 7 yr old girl. I have learned over the years to deal with my pain as best as I possibly can. You have to when you are chronic. For the most part, I think I have done well. I rarely get depressed, but I started the Vitamin D therapy awhile back and had a really good response to it. I wasn't used to having any days without pain. So when I started having some days without pain and then having the pain come back, it has made me incredibly depressed. My oldest daughter is saying mean things to me about my not being able to get things done around the house (I'm a stay at home mom...have to be), she makes nasty jabs if I can't make a good dinner, not getting her laundry clean (she said she should have just taken  it to her fathers because he, at least, asks her if she needs anything washed each night) and my husband has been less supportive as well. He has rolled his eyes when I've asked for something or makes an exhaustive blow from his mouth...so I just tell him to forget it. I don't want to be in this position. In fact, I would rather not be here at all. Do they not get this??? Do they not understand how painful this is and on top of that I feel like a complete and total burden to everyone??? Who would choose to live a life like that? I always read comments about how supportive everyone's family is, but mine just isn't always like that. Mine just seems irritated and sick of me being like this. I'm going to bust in a bout 6 months or so and I think that is the only thing that is getting me through this. I don't normally sound so pathetic, but I have spent days getting one attack after another and I have no one who understands, quite the contrary, just waiting for the next person to let me know why they are sick of me not being able to hold down the fort for them. Hoping someone else can relate. :'(

Hi Sadie and welcome

How effective is the vitamin D3 for you? If it is only partially working then I'd suggest sending a PM to Batch as he is the guru on getting this working for people.

If you're still getting CHs, have you got anything to abort them with? Something like oxygen or imitrex injections? If you're using oxygen, have you read through our oxygen page - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE ? It makes a massive difference to things when you can reliably kill off CHs without having to just ride them out through all the pain.

Are you working with a headache specialist?

For your 17 year old daughter, she really should be at the point where she is able to do things like make dinner sometimes or do the laundry. After all she will no doubt be leaving home at some point and Mum won't be there to do everything for her.

You're not the only one who doesn't have great supporters. I've read similar posts from others where friends and family just don't get it or care. I know what it is like to have CH and in some ways understand how people without it just don't understand the exact level of pain we go through as they have nothing remotely to compare it to. But at the same time, they can see or should be able to see that we are going through something pretty intense.

Hi sadie,  sorry about your situation,  we hare all no about clusters, so we can at least be your " on line supporters"
I second what mike said about messaging batch, I can vouch for the effort to which he's given me advice about the regime. It sounds to me as though it did have an effect, did you get a blood test done ?
and regarding your daughter !!!  hmmmm
I remember when my oldest was about 17 or 18, his mother did everything for him, you could say he was spoilt, so after hearing one day how he spoke to mother, with little respect, demanding certain items of clothing to be ready for him on a certain day,  it was time for a reality check,  no meals cooked for him, no washing or laundry done, and as he had a part time job, I asked him for $50 a week board !!!
it worked wonders !  totally reformed him, he had a new appreciation of what his mother did for him !  I admit, I spent an hour with him sitting down and explained the reality of life, as i'll put it !  LOL   I think we all go thru this stage with our kids, where the hole world revolves around them and they are pampered by us through out their child hood, which we should do, but there comes a time where reality comes a knocking !  A child with no empathy and little respect, needs a little "reality awakening"   This is purely from my experience, But it worked !  and both my boys stayed at home well into there 20's and it never reared its head again.  You need to look after your self first, she is old enough to fend for herself while you are being effected by cluster headaches !      time for some "tough love"
hope you get some relief from your cycle, plenty of advice to be had here,  anytime
goodluck
colin

Honey you really need to get with Batch and see if you're doing the D3 regimen right. There are other supplements that go with it.

Insofar as no support... well.. I've gone years without it (except for this board).

I was chronic from 97 till last year when I got on the D3. My family didn't understand and didn't want to understand and "it's just one of mom's headaches" was the norm around the house. The only one in the whole family who ever "saw" that I needed anything was my young grandson and he's been a joy.

But getting tuff is just part of it. I quit apologizing a long time ago. You do what you can and leave the rest. Your daughter needs her ears pinned back (in my opinion) but if she's like my son, she's just not going to understand that you hurt.

You're not alone.. but you're a lot tuffer than you realize.. I know.. Just hang in there -- and do get hold of Batch.  :-*

Sharper than a serpents tooth it is, to have a thankless child. = William Shakespeare

What Colin and Mike said.

In the long run you just have to understand that others don't get it.  And be grateful they don't.  You really don't want them to, because CH has to be experienced to be fully understood.  Should they show a little more empathy?
Sure, that would be nice, but what difference does it make in the long run?  They get frustrated because things don't get done they way they expect, and that is understandable.  When they get sick things don't get done by them either, but their illness is short-term, whereas yours is constant and chronic, which is tiresome on both ends of the experience.

I understand your frustration with the Vit D working for a few days, and then the depression that comes with renewed pain.  I've said for years now I would never want to go back to being episodic!  Having a PF day, and then having the beast move back in is very depressing!

Lean on us for support.  That's what we are here for.

jerry

Hello Sadie,
It may not help but your not the only one with little or no support these days.
Sad but true I have a wife who is disabled with a horrible disease cerebellum ataxia as well. I take care of her needs but get no respect for mine. When a shadow starts I now leave the room and go to my CH room for a battle with the Beast.
Don't let it/them get you down, do what you can and maybe have a sit down with the family. Have they watched you battle? None of my kids have ever seen me in a cycle, that's my
choice. They have seen all my Oxygen tanks and masks but don't really know. I think there ready to watch a you tube video. maybe oldest is 30, 29, 26, and 24. I wish you luck and know that you are not alone!!
Tim

Hi Sadie,
I can relate.  I am a sinle mom with two teenage boys and now ex-partner. Became chronic with CH last september.
On a good day I get two hits kip 7-9 lasting 30 min to 3 hours. I do the best I can to keep lief normal. with meals, groceries, laundry and house work. But I must say I get home from work at 5 and by 6 I am in a full blown CH. My house is a mess, laundry is not done and I struggle to through some kind of food out for dinner. The I disappear to my bedroom. "the dungeon." Nobody understands. My partner is no exsistant and doen't understand the severity of pain. It effects all of our loved ones. I just wish they could understand how dibiitating the pain is. Sometimes it takes every ounce of  strength to sit and have a conversation or meal with my kids.
Yes I am with you and yes I understand. It's so hard and I feel so alone.

most show a level of ignorance to it as they dont suffer . friends family anyone..you can only do what you can...sometimes we have to educate them ...show them this sight let them read the terror stories from real people ...youtube videos the lot....i only make that effort if i deem them worthy of the effort i would have to make to tear down barriers of ignorance...we all understand what you are going through , maybe not on that magnitude but never the less we understand..

I can relate Sadie...at least on the husband part (ex-husband that is).  He was awful, until one day my chiropractor let him have it and even shared the story of a patients wife who had CH and had to be put into a straight-jacket to keep from hurting herself.  Then I found this site and this wonderful family and printed the letter to Family and Co-workers explaining what we go through.  Some still won't get it.  Thankfully since i've been here so much more is available to help us.  Too bad about your 17yo - teenagers at this age can be so selfish.  Hopefully educating your family on CH and possibly a visit to this site as already mentioned, can change that. 

wsnurse - if you're here, you are definitely NOT alone.

Hugs,
Langa