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        Supporter's Corner >> Supporter's Corner >> Any tips for an anxious supporter???
        
(Message started by: woodyclarke on Aug 17^th, 2007, 3:26am)

Title: Any tips for an anxious supporter???
Post by woodyclarke on Aug 17^th, 2007, 3:26am

Hi,
My name is Andy, supporter for my boyfriend Mike. Mike has had cluster headaches for 14 years. We've been together for 3 years. This past June/July he had a terrible period. I was not mentally prepared for this Beast. I'm a nurse , it was agonizing for me to watch someone I love suffer with such excruciating pain and not be able to help. The desire to "fix" this consumed me night and day. I developed a bit of an obsession with figuring it out,, I nearly DROVE MYSELF AND MIKE NUTS!!!!!!!!!! ending up in my own dr's office over it. THANK GOD FOR THIS SITE!!!!!!!!!!!!! It has given us hope and direction. Things are quite a bit better right now. I"m asking for suggestions, tips, coping strategies that other supporters use???????? If and when this escalates into another bad period I want to be stronger.... I don't want Mike to be worrying about me ,, thats the last thing he needs. Thanks for listening............... Andy

Title: Re: Any tips for an anxious supporter???
Post by Angie on Aug 17^th, 2007, 10:31am

Hi Andy

It is agonizing to watch, stay calm and be supportive. That is the best you can do. Go with him to the doctor and continue to read everything, it helps.

Barry goes to the bedroom where his oxygen is and I shut the door so that he has privacy. He likes to be left alone when he is having a hit. I respect that and wait for him to come out.

I continue doing what I was doing and keeping things as normal as possible.

Talk to Mike, find out what he wants you to do. Be supportive.

Angie

Title: Re: Any tips for an anxious supporter???
Post by Jackie on Aug 17^th, 2007, 12:58pm

Ditto to what Angie said.... :)

Couple other things...watch for signs of depression....keep him encouraged....lead as normal a life between hits as you can....make him totally aware that it's not his fault and he shouldn't feel guilty.

I'm sure you all have formulated a plan for when the attacks come....if not it really helps to have a plan.

It's OK to be upset, woody....we all are....but it's much easier on them is we hide it the best we can (that's my experience anyway). You really have to stay strong when they are in cycle. Never let him see you cry...never let him see you sweat... :P Remember....as horrible and painful as CH is it is NOT terminal....

Hang in there....you'll do fine.

Jackie...

Oh....a glass of wine and bubble bath for you is good (Margi's advice to supporters.... :D)

Title: Re: Any tips for an anxious supporter???
Post by Linda_Howell on Aug 17^th, 2007, 1:26pm

Quote:

Oh....a glass of wine and bubble bath for you is good (Margi's advice to supporters.... )

LMAO Jackie. That is Margi's advice for everything. That, and you forgot a good neck rub.

Andy, your desire to fix this is understandable, but I think you've read enough here so that you can realize now that you cannot. All you can do, together with his Dr. and him is figure out what works best for him as far as the pain is concerned...and then take care of yourself so you can be the strong one when it's his time to be weak, by starting the coffee, getting an ice pack, making sure the 02 bottles are full....that kind of thing.

You're one hell of a supporter and I'm sure he considers himself very lucky to have you. :-*

Title: Re: Any tips for an anxious supporter???
Post by woodyclarke on Aug 17^th, 2007, 4:23pm

Thanks ladies,,,,,,,,, I am much stronger since I came on this site,,,,,, I"m sure with time my anxiety will decrease. Thanks for all your advice. I will be thinking of everthing you have mentioned the next time Mike gets a hit. Andy :)

Title: Re: Any tips for an anxious supporter???
Post by Mosaicwench on Aug 17^th, 2007, 6:02pm

You got excellent advice from the supporters here.

The hardest part about CH for me is NOT being able to make the "boo-boo" go away. . . the BIIIIIIG "boo-boo."

With a kid's scraped knee you slap on a band-aid, give a smooch and a hug, and send them back out to play.

With CH I can't even make it feel better . . . I can just stay out of the way, which is what my hubby wants from me.

When people tell me I'm a good supporter, I feel like such a fraud. I don't DO anything. I just stay out of the way.

As a bit of background, I was once described as a "human doing" rather than a "human being." I'm big on action too, Andy, so I know from whence you come. I guess I'll just have to consider staying out of the way ACTION from now on . . . . ;)

Title: Re: Any tips for an anxious supporter???
Post by Brewcrew on Aug 17^th, 2007, 6:14pm

You can also practice your best diplomatic tone for when you have to call his boss. My bride does that when I need her to (not often). But when she does, she's very, very good at it.

Title: Re: Any tips for an anxious supporter???
Post by woodyclarke on Aug 19^th, 2007, 12:08pm

Mike works with his dad and brother, I have had to call the "BOSS" a few times, his dad always thinks he is lying to get out of work, he never believed a headache could be that bad. One night , back before O2 and imitrex, Mike was having a terrible attack. He was in the shower basically screaming and crying. I was a mess myself just listening to it. It made me mad that his family didn't believe what he was going through so I phoned his dad, took the phone into the shower and said " I want you to listen to this and tell me what to do" His dad was speechless, from that day he has had a much better understanding of what Mike goes through. I also printed out the letter to employer and gave one to his dad and brother. It had made a big difference as to how they treat him.

Title: Re: Any tips for an anxious supporter???
Post by Linda_Howell on Aug 19^th, 2007, 12:12pm

Good for you Andy !!!!!!!!!Proactive...that's the ticket.

(even better would have been for his family to actually see him during a hit. Once would be all it would take) ;)

Title: Re: Any tips for an anxious supporter???
Post by Mosaicwench on Aug 19^th, 2007, 1:51pm

Oh Andy - good for you!

Brew's mother has never seen him get hit (nor has the rest of his family) and so they try to sweep it under the rug, too.

I really wish they'd take that old advice about walking a mile in our shoes before make a judgment . . . .

You're a strong supporter Andy - we're proud of you!

Title: Re: Any tips for an anxious supporter???
Post by woodyclarke on Aug 20^th, 2007, 5:10pm

Thanks mosaicwench!!!!

Title: Re: Any tips for an anxious supporter???
Post by Lotus on Aug 26^th, 2007, 6:55am

Hello Andy :-*

Sorry about not replying in to this earlier. I have been working putting in 50hr+ a week so things have been rather hectic.

I know exactly what you mean about family not understanding what it is like. When my husband came down with his first CH cycle last year, I tried so hard to explain to his family ( who live in a different state ) but didnt get anywhere. I sent them heaps of information from this site and more, I even sent them the video clip of ClusterChuck getting hit and still it didnt register, until his father and his grandmother came to visit for a weekend and witnessed first hand what it was like. They couldnt cope with it! His mother is still in denial about the whole thing. She refused to come stay with us while he was in cycle !

So these days I dont bother anymore with people who dont understand or dont believe that my husband has CH and how bad some of his attacks can be. I adopt the philosophy that those who matter will understand and those who dont understand wont matter.

Regarding tips on how to cope with anxiety, I have only three:

1- Knowledge : the more you know about the condition, the more you will be able to predict, be prepared, cope and deal with it. Read as much as you can. Talk to as many people here as you can. Ask as many questions as they pop into your head. When Mike is well and in a good mood, ask him too.
Many people here have laughed at me whenever I signed onto the chatroom because before they knew it I would have them grilled on their experience and condition. ClusterChuck jokingly called me the " terrible interogator" !
Although I didnt know much about CH before, I can say now that I know more than some specialists out there. I just had to cramp things in real fast.

2- Concentrate on your own life: read up on CH and find out as much as you can about it. But then as you walk away from the computer or from the phone, focus on life outside of CH. Normal life should continue regardless whether he is in cycle or not. Dont sit there fretting about the next cycle or the next hit. Keep yourself busy with your own life. Keep working, doing housework, going out, exercise, spend time with family and friends .... as normal. Make sure you have time for yourself, to go shopping or to have that well deserved manicure! When the cycle comes or when the hits come, then run to get him his ice, his coffee, his redbull, his injections, his oxygen mask .... whatever it is that he has chosen to fight the beast with. Often it may be all of the above. Once he has all of his ammunition with him, you relax, take deep breath and let him deal with it. Stay close so that if he needs more ammunition or a change of weapon you can help getting it quickly for him. Once its gone, and believe me, it will be gone, even the bad hits, then come sit next to him and give him a hug and a cuddle.

3- Routine: work with Mike to develop a routine as to how and what he will do when the hits start. Mike may need to experiment with different ideas and weapons before he finds what works best for him. Once you and him have found a good routine, practice it until you get used to it. Then the next time the hit comes, you will go into "autopilot" mode and will know exactly what to do. This will greatly reduce the anxiety. However, be prepared and have plan B up your sleeves so that if the beast decides to throw you a curve ball you can kick his ass right back.

I will keep in touch and will PM you more of my personal experiences on how to cope with anxiety associated with CH.

Take care, all the best and painfree wishes to you and Mike.

Hugs

Annette

Title: Re: Any tips for an anxious supporter???
Post by QnHeartMM on Aug 26^th, 2007, 1:56pm

Hi all -

One more thing I was going to add, especially this time of year, do your best to keep him cool. I know my CH'r is very sensitive to temperature, he has about a 5-degree tolerance swing. So keep the house cool. When Joe's (Guisepi) getting hit even pointing the fan at him helps. And then I give him space, peace and quiet.

-Christy

Title: Re: Any tips for an anxious supporter???
Post by SpyGirl on Sep 13^th, 2007, 11:23am

My hubby of 15 yrs has suffered for 20+ yrs. Fortunately his job has seen him hit and understands. If I call in for him in the morning I just tell them he has a headache. They know he will be in as soon as it is over. It amazes me how everyone around him is able to offer their support. It makes me happy to know that he is ok. It has gotten easier over the years as more and more of our friends understand. They call for him and all I have to say is "he has a headache" and they understand. Even times when I call him at work I get the same response from whomever has answered the phone. "he has a headache" I know what that means and know that his coworkers do too.

Title: Re: Any tips for an anxious supporter???
Post by Mosaicwench on Sep 14^th, 2007, 8:39am

on 09/13/07 at 11:23:24, SpyGirl wrote:

I'm really glad you and your hubby get support like that from friends and co-workers. It's rare and to be cherished. Welcome Spygirl!

Title: Re: Any tips for an anxious supporter???
Post by Ree on Sep 21^st, 2007, 10:42pm

Hi to the newbies... My husband Dave suffers from CH. 20+ years, my name is Ree and I have been on this website since the beginning years of Ch.com. I have to say this post really hit home with me. Like you when I first got online, when I got our first computer, I decided I was going to find a cure for Dave. I looked and searched and found ch.com... so I started reading and though I was happy to find people with this common thread. I was sad because there were so many and it meant there wasn't a cure for Dave.
Dave gets cycles like your text book clusters. He gets his cycles about every 1 1/2 to 2 years... This cycle came almost exactly two years after the last one started. Some of his cycles last 8-10 weeks shorter cycles... and his longest cycle lasted 7 months and we thought we were going to go nutz. We realize how fortunate we are that he doesnt get them every day like some people here.
When Dave isn't in cycle he won't even talk about CH. I am here all the time though. I still hope endlessly too.
You Andy, my friend are a wonderful supporter. Don't let the idea that you can't stop the CH attacks drive you to anxiety. Keep believing that it will end. Just believe. I always think that somewhere somehow there will be a cure, and we will be here to witness such a gift to our society we call CH.com.

If you need me I am a pm away. or an AIM away Ree16ANGEL... feel free to contact me! He is so lucky to have you...
be well and pain free cozy nights to you both
Ree

Title: Re: Any tips for an anxious supporter???
Post by sldrswyfe on Sep 26^th, 2007, 9:16am

I can't help buy say how wonderful you supporters are...reading the "little" things you do, that by the way are HUGE to a CH, that you have cared enough to have knowledge about this maddening conditon...it's very overwhelming.

I spent many years of my condition alone...had no support...wasn't believed, and no one cared enough to even look into it. There's nothing worse than being in excruciating pain, incapacitated and to be yelled at for it...made to feel guiltier than you already do.

You supporters make the difference...having someone give a damn...well, that makes all the difference in the world.

Title: Re: Any tips for an anxious supporter???
Post by VikingHumpingWitch on Oct 1^st, 2007, 3:56am

Hi there, I'm a first poster...

My husband has just been diagnosed with cluster headaches, they have previously been at a level he can cope with but this latest attack has been so awful and reading that there is no cure has made me so sad. I want to know how people cope with watching your loved ones in such terrible pain and knowing you can do absolutely nothing? I can't even hold him because he can't lie still when it's happening. To see this in someone I don't know would be distressing but to watch my beautiful, gentle, kind husband suffer it is unbearable.

How do you get used to this?

Title: Re: Any tips for an anxious supporter???
Post by Lotus on Oct 1^st, 2007, 6:58am

Hello Viking

Welcome and sending a big warm hug to you. :)

Firstly I dont think we will ever "get used" to seeing our loved one hurt. But we learn to cope with it. Different people suffer differently and therefore coping differently.

What works for me is to learn as much as possible about the condition, then to discuss them with my husband, then come up with a plan of action that both of us are happy with.

During a high hit, a person is so stressed and tensed that it would be impossible to sit still and trying to hold him/her would make things worse, not better. Some people prefer to be left alone, others would like their family around, so you need to ask your husband what does he want.

My husband preferred to have me around during the lower hits, but when it reached a kip9 or 10, he preferred to be left alone and I would be better off not sitting there watching him because I wouldnt be able to bear it either.

Our agreed plan was that when the hit started, I would help him getting the coffee, Red Bull drink, the ice and some wet towels while he started sucking down on the oxygen. We also left several imigran injections and sprays around the house so he could grab one quickly if he needed to. He has 3 oxygen bottles at home, 1 in the kitchen, 1 in the study and 1 in the bedroom so he wouldnt have to go too far to get to one.

I would stay in the same room but I dont talk to him nor touch him. I would just keep an eye on the ice and towels and get him fresh new ones as needed. When the hit was over, I would help wipe his back and neck because he would be so hot and sweaty. Still I wouldnt say a word to him until he has gotten outside and has had a cigarette. Only then would I come to give him a hug and started talking to him.

When things got too much, and yes they did often, I would get out of the house and go for a walk or a drive. If I felt like crying I would allow myself to wail until I ran out of tears. I found talking to others here tremendously helpful, because I felt understood and supported.

Its not easy but together, we can get through this. Please encourage your husband to join the Board and talk to other CHers here, he will feel so much better. I am all ears if you would like to chat, just PM me or email me, anytime.

Take care and painfree wishes to you both.

Annette

Title: Re: Any tips for an anxious supporter???
Post by VikingHumpingWitch on Oct 1^st, 2007, 7:47am

Hello, thanks for your kind words - he's had a look round the board and has been to the doctor now and been given Sumatripan in tablet form, although they don't seem to be helping.

Although he has been diagnosed as having cluster headaches he doesn't have the symptoms with the tearing eyes or drooping eyelids - I am clinging to the hope that he might not really have it and it's something less permanent. This is by far and away the worst it has ever been. His attacks are triggered when he is ill or run down, which also doesn't seem to be a normal feature.

This is a wonderful site, it's so good that you all have each other for support and guidance. I have now learned what it's like to be sat at 1am watching helplessly as a grown man cries, begs to a god he doesn't believe in and beats his own head. Times like this it's great to be able to share the experience with people who understand.

Title: Re: Any tips for an anxious supporter???
Post by Lotus on Oct 1^st, 2007, 8:38am

Has your husband seen a neurologist? Its important that he gets diagnosed properly because there are many different types of headaches and the treatments are very different. Getting the wrong meds for the wrong types of headaches may be dangerous.

It is possible but not common for clusterheadaches to not have the Horners syndrome ie the droopy eyelids and the tearing eye and the sweaty brow, because they are indication that the parasympathetic nerves are activated. Another common feature is the clock like timing of the attacks, since the bodys largest biological clock is malfunctioning ie the hypothalamus. If your husbands headaches dont have these characteristics then there is a chance that he doesnt have cluster, and that would be great news.

Please look for and go to see a good neurologist who is experienced with treating headaches to get his diagnosis confirmed.

BTW, if he does have cluster, then he needs oxygen, other preventives and imitrex injections or at least imitrex nasal sprays, the pills take too long to work and are pretty useless.

Hugs

Annette

Title: Re: Any tips for an anxious supporter???
Post by VikingHumpingWitch on Oct 3^rd, 2007, 5:09am

Hi! Well we went to see a neurologist Monday afternoon and the great news is that it isn't cluster headaches - the bad news is that he has pneumonia. But that's treatable.

The neurologist didn't know what the headache is, because he usually gets small shooting pains when he has an infection she thinks maybe it's just because he has a bad infection that the pain has been so awful. I think (with my complete lack of mental training) that there may be some connection with his pain and cluster headaches in that the swollen blood vessels might be what causes his pain - the way he described how it felt is pretty much exactly what I read here and elsewhere. He really didn't care about having pneumonia, he was just so relieved when they finally gave him something that helped the pain (and he is so scared of it coming back).

Anyway he has been in a happy drugged up state since then with only mild pain so hopefully he is sorted for now.

I wish you all the very best of luck, I know you'll keep supporting each other and that's the best you can do.

Title: Re: Any tips for an anxious supporter???
Post by Lotus on Oct 3^rd, 2007, 7:09am

I am really glad to hear that your husband doesnt have CH !

I wish him all the best and that his pneumonia clears quickly.

Take care and God bless.

Annette

Title: Re: Any tips for an anxious supporter???
Post by Ree on Oct 7^th, 2007, 12:31am

but if he gets that pain again come back... Ree