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        Cluster Headache Help and Support >> Getting to Know Ya >> Supporter in Need of Support
        
(Message started by: DarnellsToye on Apr 13^th, 2008, 3:26am)

Title: Supporter in Need of Support
Post by DarnellsToye on Apr 13^th, 2008, 3:26am

Hello, my name is Toye. My boyfriend of 2 months is a CH sufferer. He was diagnosed almost a year ago. In the 6 weeks I have known him, he has had 3 onsets. We are both laid off right now, so there is no healthcare. Due to this, he won't go to the ER. So we had an argument and I went for a walk at 10:30pm. When I returned, he walked out. He's been gone for over 2 hours now and he's on foot. I'm worried. Will these arguments become a constant thing? Is there anything I can do for him or buy OTC for him at the local pharmacy? Please help me. I love this man and I refuse to allow these cluster headaches get between us.

Title: Re: Supporter in Need of Support
Post by coach_bill on Apr 13^th, 2008, 7:52am

hello, try not to take to heart to much, the last thing i need when im on the onset of a hit is my wife nagging me to go to the ER. there is very little they can do to help anyway, and i feel that most of the time they dont understand cluster and want to give drugs and send you home. so it is my belief the fighting will contuine, if you keep on him to go to the ER. the best thing you can do is just leave him alone, be there for support, but quietly!! ask him if there is something you can get him or help with, thats about all you can do anyway. so many things go thourgh my mind after the hit is letting up, what did i say, or what did i do. dont hold him to what he says at that time, he is dealing with pain that most people will never truley understand. also i really feel for him without insurance, you can get MELATOININ it is cheap and will help as a sleep aid to keep the beast at bay at night. also go to the clinic, tell them what you need so it will only be 1 trip, print out some of these notes from others when you go. for most of us predgnazone is the beast stopper, and it is very cheap. if it were me i would go to the clinic get the drugs need to stop the cycle now!! and pay them as soon as your back on your feet. let him read this. "you will be good to none, even your self if you dont go to the clinic, piss on the bill or embarrasment, get better now!!! so i hope this advice helps your problems, feel better coach bill

Title: Re: Supporter in Need of Support
Post by DennisM1045 on Apr 13^th, 2008, 9:46am

Hi Toye! It's great of you to be in his corner like this. Supporters are amazing people. Thank you for being there for my clusterbrother.

Coach is right. You need to let him decide the best course of action. Trying to force him to the ER, which might make you feel better, won't help him much and will only cost a bunch of money. ER Dr's (for the most part) don't know how to handle CH. Their typical reaction is to use narcotics. These only make things worse.

If he really needs the ER, he will know...

The best time to talk about treatment options is when he's NOT in pain. I know when I'm wrestling with the beast the last thing I can do is carry on a rational discussion. I'm much more likely to lash out just to remove the distraction. Don't take it personally. It's just the pain talking.

Melatonin is cheap alternative to help with sleep. I take 12mg at night. It can take a week to make a difference and you need to build up slowly.

So is welder's Oxygen. 100% O2 @ a flow rate of 15lpm will abort a hit in less than 10 minutes for me. You have to get on it quick though. A welder's rig is a relatively inexpensive way to go. There are others who know way more about that than I do. I'm sure they'll be along in a bit.

You should check out the non-med page on OUCH-US here:

http://www.ouch-us.org/chgeneral/nonmed.htm

There is a lot of great info here too:

http://www.ouch-us.org/chinfo1.htm

The latest on treatment strategy can be found here:

http://www.plainboard.com/ch/chtherapy.pdf
http://www.efns.org/files/guideline_49.pdf

So read through everything and have him check out the info too. From there you two can work out a plan together. Good luck...

-Dennis-

Title: Re: Supporter in Need of Support
Post by DarnellsToye on Apr 13^th, 2008, 10:59am

Thank you so much Coach Bill and Dennis. He never came back home last night, nor has he called. :-/I don't know what to think or do. But as soon as he comes back home, I will show him your words of encouragement and advice. I don't know what I would be doing if it wasn't for this community. Thank you ever so much. And I look forward to building a relationship with him and with you all. Thanks again. :)

Title: Re: Supporter in Need of Support
Post by Bob_Johnson on Apr 13^th, 2008, 1:35pm

1. Most of us find that we want to be VERY alone, no people interactions, often in silence and darkness, during an attack. I would encourage you to suspend any efforts to "help" and let him control the situation: what kind of environment is helpful, etc. Only after the attack can any useful talk occur.

2. ER rooms are usually a big waste of time and money according our to collective experience and reports in the medical literature.

3. Given the size of your city I'd suggest that you could help by searching for a free/low cost clinic. The level of expertise is often limited but, if you find such an operation, we can feed you medical information which you can offer the doctor.

If the local United Way office can't direct you, call your local hospitals and talk to their social worker/patient advocate to find source of affordable care. Some hospitals are now sponsoring such operations; they may know of places.

Title: Re: Supporter in Need of Support
Post by DarnellsToye on Apr 13^th, 2008, 1:39pm

Thank you, Bob.

Title: Re: Supporter in Need of Support
Post by coach_bill on Apr 13^th, 2008, 3:53pm

dont worry he will be back, the very fact that he let you see him with a cluster should tell you he cares about you. there are only 3 people in this world who have ever seen me during a attack, it's not something that we let just anyone see. for most of us it is a very private and hidden part of our lives, he'll be back. coach bill

Title: Re: Supporter in Need of Support
Post by Guiseppi on Apr 13^th, 2008, 10:52pm

My supporter/wife has stuck by me for 28 years. She knows to just leave me alone when I'm getting hit. If she bugs me I will say horrible, obscene, hate filled things to her as all I can think about is how much it hurts and how bad I want to lash out at somebody. Afterwards I'll feel like the scum of the earht because I know it hurts her as much as it hurts me.

That being said, most of us don't like to even talk about these things when we're not getting hit. We have an irrational fear that even discussing them will bring on an attack. Do suggest he gets on line and talks to us, he won't have to explain anything to us, we understand.

Thank you so much for being a supporter, I know it's a hard road for you and I don't know what I'd do without my wife helping me ou. Good luck.

Guiseppi

Title: Re: Supporter in Need of Support
Post by Annette on Apr 14^th, 2008, 12:20am

Hi Darnell

Welcome and my heart goes out to you. You must have been so worried that he had gone out all night and not came home ! Here is a big hug to you. [smiley=hug.gif]

I am a supporter and my husband has CH. His last cycle was very long ( 8 months ) and it sure wrecked harvoc in our home life as well as his work life. We both had at different times gone for long walks. We always came home although sometimes it took longer than others to calm the head down. So I totally understand how you feel.

Please remember that during a cycle, a person's neurotransmitters and hormones are all over the place. Serotonin, noradrenaline, catecholamine, dopamine and even testosterone levels go up and down much more than normal. All of them affect a persons mood, memory and ability to concentrate. Therefore as a supporter, its important that you are the one to remain cool, calm and collected. Give him lots and lots of space and privacy and just be there in the background to offer a hug, a kiss and words of support.

Encourage him to come to the board as he will then get the support from everyone here as well as you. Feeling or being lonely with CH is the worst thing a person can endure.

Let him know that without insurance there are still a lot of things a person can do or buy himself which will make a big difference in how his CH is controlled.

Such as

1- Oxygen
2- Energy drinks like Red bull
3- Melatonin
4- Magnesium, Taurine, Calcium supplement
5- Ice, hot and cold showers, exercise ....
6- Water, water , water
7- Kudzu
8- Rhodiola
9- RC seeds
10- Etc

Many here with just a strong " it cant beat me " attitude have gone med free, even those with chronic CH, and they cope very well, with both home and work.

There is always light at the end of the tunnel. The trick is to keep walking the tunnel and to grab the hands of those who are ahead of you in the tunnel so they can pull you along ....

There are many hands here to grab hold of, including mine :)

Take care and painfree wishes to both of you.

Title: Re: Supporter in Need of Support
Post by Linda_Howell on Apr 14^th, 2008, 1:12am

Quote:

He never came back home last night, nor has he called. I don't know what to think or do.

While I agree with everyone on this subject of being left alone because I too want to be left alone and I certainly am grumpy and grouchy....till it's over.

He never came home nor did he call is, uh...um... a bit much and I hope he apologizes to you for this behavior. All night long and he couldn't call? Just left you to worry? >:(

Please update us Toye. You sound like such a great supporter and I hope he isn't taking advantage of that by staying out all night like this.

Title: Re: Supporter in Need of Support
Post by deltadarlin on Apr 14^th, 2008, 9:25am

Toye,
Just looked up your fair city to see what might be offered. USC is located there and they have a school of medicine. With that, I'd bet any amount of money, that they have (a) a free clinic or (b) one based on income. Their telephone number is, 803-733-3200 and another telephone number, (803) 255-3400.

You could luck out here. Sometimes, teaching hospitals are the best place you can go (you may have waits longer than normal, but you're being seen at a place that is *cutting edge* when it comes to medicine). I know this, because two of the physicians that my daughter sees are at one of our teaching hospitals and they are both top notch in their fields.

Good luck and let us know what happens.

Carolyn~aka~deltadarlin