I know there isn't much I can do to support my husband. But I don't know what to do. I'm so confused and everytime he has one all I can do is break down and cry. I hate seeing the man I love in that much pain. This is the first yr he has had them with me. Please tell me how I can support my husband during his CH's? :-/

Oh Lisa, welcome to Supporters Corner. I'm a 30-year supporter of my husband too. My name is Christy, my husband is Joe (Guiseppi on the board). In the early days it was scary, frustrating and sad. But now we have a system to treat him and I can be a part of that.

He uses O2 like many here to abort the CH. When I hear the tank (which by the way I've named Olivia) I know he's getting one. I get him an ice pack, a red bull, and go in the other room. I can hear him if he needs me, but he likes to go it alone.  Only takes him about 10 minutes now to abort.

Once he knows he's starting a cycle he calls his neuro and begins the preventatives. Prednisone for about a 10-day taper, lithium to build up at the same time. He also religously has been taking Batch's PH combination of supplements and lemonade.

Be glad to sit and talk with you anytime, on here or by phone.

Lisa Kaiser wrote on Apr 7^th, 2011 at 12:04am:

I know there isn't much I can do to support my husband. But I don't know what to do. I'm so confused and everytime he has one all I can do is break down and cry. I hate seeing the man I love in that much pain. This is the first yr he has had them with me. Please tell me how I can support my husband during his CH's? :-/

not that it helps MUCH but i feel the same :\

IMHO, the best quality in a supporter is the ability to know when to back off. We can talk about this later, when I'm not getting hit. For now, just keep one eye and one ear open. I might need an icepack, energy drink, new O2 tank, and if I do, I'll make it abundantly clear. Otherwise, I need to get through this by myself.

Oh Lisa, you're not alone.  I know it feels like you are, but all the supporters that hang around here are in the same boat.

We've all gone through the isolation, the frustration, the helplessness, and the pain.  It's not the pain of CH, but it's just as valid and real for those of us who can't help our loved one's pain.  Being a mom kinda makes one feel like Superwoman.  I'll kiss a boo-boo, put on a bandage, and all is well in the world again.  Kissing the CH boo-boo doesn't cut it, and it feels like nothing will ever be right in the world again.

I'm Brew's supporter and wife of 29 years (above).  He needs to fight the beast alone, but that doesn't mean abandoned.  I've been there to take the wheel when he's hit while driving, I've been there to drive him to the hospital when he's had a 6 hour intractable fight with the beast.  I've moved the kids out of hearing range, I've brought him full O2 tanks, I've made more pots of coffee than I can recall.  Whatever he wants, he gets when he needs it.

I've educated myself to the gills about abortives, preventatives, treatments, faux-cures, and uninformed doctors.  So much so that neuros have asked me if I'm a healthcare professional!!  No, I'm an artist, and a wife of a CH sufferer who knows that knowledge is POWER.

Read all you can here, ask questions, head over to http:/www.ouch-us.org and clusterbusters.com. Browse all the studies and treatments and whatever you can get your hands on.  Your research can offer your husband the power to shape his own future - despite CH.

The most important advice I ever received and now I repeat it as often as possible, is "LIVE BETWEEN THE HITS."  Life is what happens BETWEEN attacks.  If you or he let CH take over your lives it's nothing but a downward spiral.  Living the mantra of "I can get through the next hour" will serve you well.

CH will not kill him.  And it's the choice of both of you together as to how much it affects your lives together.

Best of luck to you both - we're here when you need us.

from the man you love: stay close to my side when I'm staggering around and am dizzy. when I'm wearing a trench through the floor, please remind me later to get new carpet as i wore the old one out. at the peak of pain and nothing else is working drive me to the E.R. never let them commit me to the psycho ward. help to get me out of the public eye if we are out someplace. I've had this for 20 years and when the cycle ends life is tripping lights fantastic and i enjoy it with you by my side.  lastly and the hardest part of all, just love me..... enjoy our good days together because every pain free day is a good day for me. ever so sorry to put you through this my loving wife and angel. I'm so very lucky to have you by my side. not every one has a demon and an angel to walk thru life with. love you with all my heart, body, and soul. til my last dying breath fades from my lips.

Quote:

ever so sorry to put you through this my loving wife and angel.

A different tack: you're not PUTTING her through anything. She CHOOSES to go through it with you. PUTTING her through something implies that you have CHOSEN this path. You have not. It chose you.

By extension, every successful marriage I've ever encountered has a common thread: you both CHOOSE each other every hour of every day. There is nothing forcing either of you to stay. It is a conscious choice by both of you.

Try it sometime - instead of saying "I love you" to your spouse, say "I choose you." You'll be surprised by the reaction.

Tomk - if you are Lisa's husband (assuming you are) what a wonderful reply to her! And if you're not, you are probably saying what her love would say.

To add to what Pat (Mosaicwench) said - take the information you learn here to his next doctor's appt. It is sad but many doctors never see a CH patient, so they don't know what progress has been made in treatments. We keep a file for the occasion, and go in and talk. These visits aren't really lay on the table so I can look inside your head visits. They are sit and chat and talk about what's working and what's not.

Remember:  Abortives & Preventives are the key to care. And we're big believers in oxygen around here - used correctly at a minimum of 15lpm with a non-rebreather mask.

Not sure what part of the country you're in, but we're everywhere and often times meeting another CH sufferer face to face can make a huge difference. We get together a couple times a year too. Usually once in the midwest somewhere in January (not sure whose bright idea it was when it's so much warmer here in San Diego then!) and then the a nnual OUCH meeting. This year it's in July in Nashville. If you have some vacation time you might think about joining us.

Best,
Christy

Hi Lisa....welcome.

Reading this puts tears in my eyes.  I've/we've all been in your shoes at one time....bless your heart.

You've been given some good advice by two gals that are A-1 supporters. 

There is always someone around here to listen and help.  Keeping talking to us and we'll do everything we can for you and your hubby.

I can tell by your posts that you two have what it takes to deal with this.  You love each other...hang on to that and to each other.  You'll be fine.

Jackie

I want to thank you all for your replies! You all are right. And yes Tom isn't putting me through anything. I choose to be by your side every minute of every day. good times and the bad. No matter what I will always be there for you! I love you with all my heart, body, and soul. And for the rest of you that replied I want to thank you. It's good to know that Tom and I aren't alone in this. We have learned so much from this sight and each of you. I give thanks from my family to all of you.  :)

Hi Lisa. 

The ladies have given you wonderful advice.  I do the same things that they do (I learned from them).

If I see my husband high tail it for the bedroom I know what's up.  I grab an energy drink and an ice pack and bring it to him and quietly back out of the room.  If he's in there for a long time I will peek in just to see if he's ok.  If he's still struggling I go get a fresh ice pack and hand it to him and I go back out.

When I first learned about his CH I googling all the time and learning as much as I could.  I go with him to all of his appointments and I annoy the doctors like crazy, but I want to make sure they understand.

I've cried my fair share of tears over the helplessness, I've been frustrated, I've been down right pissed.  Even after the 10 years I've been with my hubby I still go through these emotions, but not nearly as much.

Welcome Home, Lisa and Tom.

We're family now, warts and all!

Family indeed. I like alot of this family even more than the ones related, LOL.

Hey Flipperlips - nice to have you back.

Christy

  [smiley=engel017.gif] this was an excellent day just a minor this a.m. 7-9am thanks for the all the support you have shown my wife. this can be terrifying thing to see first hand. with not much to do to help except be near. I've fought this battle a long time and its very very scary when your alone with no one to call out to. forever grateful life has changed. there my be a demon loose but god did send me an angel to watch over me and give me the strength to fight another day. peace to all, wishing pf d and n. thanks to one and all again. :)

Oh yes, we are family here and we do our best to help and support each other.  You two are related to us now...like it or not :)

Yes...FlipperGirl,  it's great to have you back.  You've been missed.  Tell the ****bird I said hey. ;)



Modified to add:  Threads like this...well, that's what it's all about and what DJ had in mind years ago.   :)

Yes Tom is can be terrifying indeed.  I'm sure seeing the words that you have written mean the world to her.

Jackie knows first hand what I mess I was when I first found this site.  With her help and the help everyone else here I gained so much knowledge and understanding of CH and learned not to take anything that Phil said to me personally.  It took time, but I got there, well for the most part  :)

Thanks ladies...it's good to be back  :-*

Yes you all are right we are family now. (warts and all lol) Tom and I couldn't be happier to have found this site. We are finally on the right track. Tom finally got some O2 even tho his insurance keeps denying it! It's such a relief to get it. Tom feels alot better about it. Thank you all for the support and advise you have given me and Tom. You all are angels to my eyes. Thanks again,

~Lisa~0:)

Tom, welcome to the site from another sufferer. In case you haven't please read the "oxygen info" link below.

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Hang in there,  Don

Hi Lisa, and gang (or is it family?)

I'm not in a relationship at the moment, but am a CH sufferer. So what I find I'm lacking most is a supporter.

When I am in a relationship I worry about the impact my attacks have on the person I care about. I know they find it difficult seeing me in such pain and feeling helpless. But what I miss most is having someone there. Having someone to hold me, especially afterwards when all I want to do is cry, means more to me than I can find the words for. But also, someone to get me water (red bull doesn't help), I usually need two glasses of cold water, and a blanket because my hypothalamus goes berserk after an attack and I end up shivering like crazy.

But the most important thing, and what I miss most is being held and just not being alone. Sometimes that really, really sucks!

So, you may feel helpless, and I totally get that! But trust me, your partner feels 1000 times less helpless with you there.

xx Renée

Hugs to you Renee'.

It helped me so much to read this and all of the replies. My amazing husband has been suffering for over 20 years. I feel so helpless. I do everything I can to support him when he is in so much pain. He has been in this cycle since June 12th and is so hopeless. He has never had a cycle last this long. Nothing about this disease makes any since. No patterns, no definite relief. He and I are both in the medical field, and with everything I have seen in all my years, nothing compares with the suffering I have seen him experience.

Again thank you for the amazing post and all the wonderful replies.

WH - Hop over to the following site and nose around a little bit. Things continued to get worse and worse for me until I found these guys and gals:

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Now things are better. Much better. It's no fluke.

Watching helpless wrote on Sep 18^th, 2011 at 12:25pm:

He has never had a cycle last this long. Nothing about this disease makes any since. No patterns, no definite relief. He and I are both in the medical field, and with everything I have seen in all my years, nothing compares with the suffering I have seen him experience.

THIS is the "normal" of being diagnosed with cluster headaches.  It doesn't make sense, it isn't fair, and no cycle will be like the last one.

We learn that the best defense is to be able to roll with the changes.