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        Supporter's Corner >> Supporter's Corner >> when is going to end?
        
(Message started by: lil_jo on Jan 4^th, 2005, 8:15pm)

Title: when is going to end?
Post by lil_jo on Jan 4^th, 2005, 8:15pm

i know my husband is going to be reading this, but i just cant take it anymore. i sit here and see him in pain and see how much it hurts him and it hurts me to see him this way. i am hopeless and helpless. nothing i can do can make the pain go away. he talks about "alternative" treatments that scare me and make me so nervous. i dont know what to do. i know this site is *his* safehaven, but i needed to vent to those who know how *i* am feeling.

thanks for listening

mrs.edouble ;)

Title: Re: when is going to end?
Post by lionsound on Jan 4^th, 2005, 8:54pm

Hi, it's James, Rori's husband. You look so happy in the wedding pix; it's a shame that your joy is tempered by Eric's headaches. I am not a headache sufferer, but I suffer watching Rori having no solution to her pain. I am a "man of action," and being unable to act to alleviate her pain is frustrating, painful, and depressing in its own way. Take heart in that you (the two of you!) are not alone, and that despite the bleak days, there are also joyous days. Revel in them, and make the most of them.

Title: Re: when is going to end?
Post by Margi on Jan 5^th, 2005, 10:52am

Hi, Mrs. EDouble,
I'm so sorry you're both going through cluster hell. It does suck. But...it is survivable. You two need to work out a battle plan. Talk to him when he's not getting hit. Ask him what he wants you to do when an attack hits. Does he prefer to be alone? Does he want you to bring him ice water? Meds? Watch the clock for him and tell him how long he's got to go before the attack ends (they're usually pretty predictable in length)?

There is honestly nothing you CAN do to stop his pain, honey - but you can make sure he has everything he needs to get through each attack. The hardest lesson for a supporter to learn is that we DO have limits - we CAN'T cure this shit. So, in defense, we educate ourselves. There are volumes of information on the 'net now. Read Read Read. Visit our Family Services Pages for tips on how we supporters get through this stuff. Here's the link: http://www.clusterheadaches.org/family/index.htm

Also, make sure you take some time for YOU, ok? Even if it's just a candle-lit bubble bath, or a walk, or an hour out shopping or just driving around. Take that time for yourself to get yourself re-centered. You're not much good as a fellow warrior for him if you let yourself get run down.

Finally, I gotta ask you....you say you're afraid of the "alternative" treatment. Are you talking about shrooms? Why are you afraid of it? I realize it's illegal, but it truly has helped so many clusterheads here.

Please, if he's considering the treatment - support his decision. He has the right to pain freedom, and I'm sure he'll take every precaution to make sure he's careful. The dose required to readjust the cluster cycle is sub-hallucinogenic, so if you're worried about him starting to believe he can fly out a ten-story window or something, rest assured he won't. He won't start speaking in Tongues or anything either. Of all the cluster meds out there, this one probably has the fewest side effects. If he wants to try it - stand behind him, ok? It just might be the thing that can regulate your lives again.

Please feel free to email me if you'd rather talk "off the board" here. I've been a cluster supporter for close to 20 years now for my husband. I do understand what you go through. My email is moxie_miss@hotmail.com.

Hugs,
Margi

Title: Re: when is going to end?
Post by Ree on Jan 5^th, 2005, 5:47pm

Hi Lil JO... I have been in the same seat as you for quite a long time now... to answer your question "when is it going to end"???...The answer is~~ when we finally have a cure. Even if it ends for this cycle, it will return and return. It has control over all of us here. That is why we come here. We come here to conquer it. We come here to be among similar tales. Share similar advice. Coming here was tough for us. Dave doesnt even like to talk about cluster when he isnt in cycle. I had to find help for us. I hated feeling so alone. So why after your hubby has been here for so long are these the first 2 posts for you? We want to help you. We want you to be a cog in our machine here. We need you. If at any time you need support that goes beyond what is offered here. Feel free to email or call me personally. I truly want to help you. Helping you actually helps me. Might sound selfish... but its true. There is strength in numbers.......... Nice to meet you! Dont be alone in this...

Love to you and Eric... Ree

Oh and ps... Not everyone uses the alternative method... that is not ok for my husband he drives tractor trailer for the US Postal Service. If your hubby is drug tested for his job it isnt a good idea to use that method and though it does work for some people it's not for everyone... Good luck

Title: Re: when is going to end?
Post by minnie on Jan 6^th, 2005, 12:37pm

Hi Lil Jo Nice to meet you .Please feel free to come here anytime to vent, ask questions and eventually you'll be giving advice on what works for you and Eric.,
As I'm sure your learning theres no one magical treatment for CH.Margi was so right in her post (she has been a Godsend for those of us dealing with "the other kind of pain")
About the alternatives you as well as Eric should read up on it.Clusterbusters is a great site for info and support.Only the two of you will know if its right for him.The next part is my personal opinion but much research went into reading about "the alternative treatment" Mostcompanies that do drug tests do not go to the expence of testing for all substances so dosing is not likely to be picked up.The Cluster busters site has people who can tell you more on this.Talk with Eric about any concerns you have I'm sure he's done his homework and can address your concerns.Many people are painfree because of this treatment when nothing else worked for them.It's not for everyone but if he decides to go that route please support him as you would want his support if it was the other way around.just my [smiley=twocents.gif] worth of advice.
Minnie
P.S. If you want to talk or vent just IM me and we can talk off the boards.I've been where you are.I'll praying for pain free time you both can use a break.

Title: Re: when is going to end?
Post by Margi on Jan 6^th, 2005, 3:32pm

Ree and Minnie are both right here. First of all, the "alternative" therapy is not for everyone, as Ree says and I do agree with her. My husband won't do the treatment again - it didn't help him last time, whether we did the procedure wrong or whether he is just one of the unlucky ones, we'll never know now. Whatever the reason, his cycle got worse as a result.

However, only the two of you know if your hubby is a good candidate for this avenue, as Minnie says. I read in one of his posts that he's on Topomax at the moment - VERY important that you research with the clusterbusters folks if he needs to detox from that before he tries, ok? It's best to be totally med-free if at all possible, but they really know which particular meds will interfere. Please do check with them.

And, finally - I do have to contradict something that Minnie says here - about drug screening. I work in the energy industry and our people are routinely screened for illegal substances. In the past, they did not test for hallucinogens but that is rapidly changing. We recently had an employee tested after a vehicle accident and he tested positive for psilocybin - we didn't request special screening, either. It's just automatically included now (in the Canadian oilpatch, anyway - I have no idea about the rest of the world). And, no, this guy's not a clusterhead, so we know he wasn't medicating himself. Needless to say - he's no longer employed here.

Title: Re: when is going to end?
Post by Leesa on Jan 6^th, 2005, 10:28pm

Lil Jo..........We have all been in the same place your at now but IF it ends or not you love your hubby. This the man you choose to spend the rest of your life with. No, he didnt choose to have CH and he cant change it any more then you can change the fact you fell in love with him. All you can do is do YOUR best by standing beside him and help him cope!! Grab the ice, the O2 or Trex whatever he needs. Hug him tight when the fight is over and let him know you love him! Now as far as the "alternative" treatments, Dave have done the shrooms with GREAT success. So have many others, but it is not for everyone.
Jo, none of this is easy on any of us, but when you love someone that love keeps you strong no matter what comes your way. We ALL have asked when is it going to end. For some of us it never does, but we deal in the best way we know how. And you being here show just how much you love you Eric. This is the BEST place in the world. Eric has my number if you need to talk let me know. Im here for ya hun. Been doing this support thing for almost 5 yrs now. Others have done it for longer but I learned alot from most of them over the years.
Love, Leesa

Title: Re: when is going to end?
Post by lil_jo on Jan 9^th, 2005, 12:34am

Thank you to all who have responded and to all who have sent private mail. I truly appreciate all of the support, not only given to Eric but to me as well.

Title: Re: when is going to end?
Post by miapet on Jan 12^th, 2005, 4:29pm

Lil Jo, sorry you're having such a hard time right now. I know Eric has been fighting the beast for some time now.
Everyone knows that I am all for the alternative. D was a 20 year chronic CHer when we made that leap, and he has been p/f for 34 weeks now.
As for drug testing, I didn't know that Canada now checks for psilocybin . . .that's good for our Canadian friends to know. In the US, it is not one of the drugs that is routinely checked for. IF that has been an issue in past convictions, it can be requested. The US looks for opiates, amphetamines, cocaine, and marijuana. Those are the big 4 routinely checked for.
Good luck, make sure you take care of yourself .. .and read the clusterbuster site, that way, you can make an informed decision . . .on your own . . .without being too nervous.
*positive light and energy*
miapet

Title: Re: when is going to end?
Post by minnie on Jan 15^th, 2005, 12:41pm

lil-jo,
Just wanted say HI and to see how you and Eric are doing.Please check in so we know alls ok.I know we gave you alot to think about.
Minnie

Title: Re: when is going to end?
Post by Woobie on Jan 18^th, 2005, 8:36pm

HI Mrs EDouble!!!!!!!

Welcome aboard!!!!!!!!!

Dont have much to add --- just wanted to say HI...
one supporter to another!

HugZ
tina :-*

Title: Re: when is going to end?
Post by Margi on Jan 19^th, 2005, 3:29pm

you're such a good girl, WoobieTina. You've got such a big heart.
Just wanted you to know that we all see that. :-*

Title: Re: when is going to end?
Post by Woobie on Jan 19^th, 2005, 5:12pm

on 01/19/05 at 15:29:40, Margi wrote:

you're such a good girl, WoobieTina. You've got such a big heart.
Just wanted you to know that we all see that. :-*

:-* :-* :-*

i try - :-/

(miss yer emails margi!)

Title: Re: when is going to end?
Post by lil_jo on Jan 19^th, 2005, 7:09pm

hi everyone

things are okay over here. i had a mini panic attack yesterday after eric told me about one of his headaches that he had in the morning. i am so anxious that sometimes i worry myself sick. what if he loses his job b/c of the headaches? how will we afford a house? kids? how can i even think about having kids when he is suffering? i talked to him about my anxiety and then i feel so guilty about burdening him. it's a dual edged sword, i swear!

i know we can get thru this. thanks for listening. and thanks for all of the private messages. i still have to get back to all of you :)

Title: Re: when is going to end?
Post by Margi on Jan 20^th, 2005, 10:30am

honey. relax. We've all had to learn that, while in cycle - we take it one day at a time. Sometimes, we have to hunker down and go to the one hour at a time strategy but we do ALL get through it and you will too.

Stop worrying about things that haven't happened yet, ok? (It's a hard lesson to learn, believe me - been there, done that, got the wrinkles to prove it! :)).

You'll find that clusterheads are amazingly strong and can accomplish SO much more than most people when they do find bursts of pain freedom. I've no doubt that your man will do everything in his power to make sure that you both work for the future that you have planned. Watch and see.

One last thing? Cluster guilt IS contagious, my friend - you're exactly right. I've often felt guilty that I haven't gotten up in the night with my husband when he's getting hit. But I've come to realize that there's precious little I can do for him anyway and he's learned to be SO friggin quiet that he tries not to wake me - because HE feels guilty. So, do yourselves both a favour and don't buy into the guilt trip that this Beast tries to lay on you. This is the hand you've been dealt in life and although there are times when it sucks majorly, quality of life is completely within your reach. We cluster folk just have to devise new and better ways of attaining it. And you will. :)

always here if you need a shoulder, Lil-Jo - moxie_miss@hotmail.com.

hugs,
Margi