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        Supporter's Corner >> Supporter's Corner >> New Here
        
(Message started by: redfraggle on Oct 11^th, 2002, 8:50am)

Title: New Here
Post by redfraggle on Oct 11^th, 2002, 8:50am

I'm new to this site. . my boyfriend (we live together) was diagnosed w/ cluster headaches about a year ago. .however. . he's never had an episode this bad. . . this week has been awful. . and it's so hard and so painful to watch :(

I'm just amazed that you all deal with this soo well. .i'm a wreck!!!

On top of it all. . John has no health insurance :( I have no idea what to do. . .

any advice would be great! :)

~Amanda :)

Title: Re: New Here
Post by BobG on Oct 11^th, 2002, 8:59am

Hello Amanda,
Welcome to the board.
Sorry John is hurting and no insurance.
Thanks for standing by him and looking for help.

There are som non-medicine ways to help cope with the pain. Click the waterX3 button on the left side of the board for one.

Some people use an ice pack and some use a heat pack.

Please tell us a little more.

I'm sure someone will suggest a way to help.

Title: Re: New Here
Post by Margi on Oct 11^th, 2002, 9:00am

Hi Amanda.
Sorry to welcome you here but this is a very good place to find help.
You'll need to tell us a little more about your boyfriend before we can really help. What meds is he on? Is he using an abortive for each attack, or a preventative to kill the cycle?
Read all the buttons on the left of this page, especially the OUCH Website. Go to the menus above the maps - in the first one on the left, there are some survival tips and cluster resources there. Read the Family Services pages. Educate yourself so that you can help him. And, please keep talking here, too.
Hang in there

Title: Re: New Here
Post by redfraggle on Oct 11^th, 2002, 9:18am

John isn't on anything right now. . my mom has a RX for imitrex which she gives to him b/c she doesn't need it (she gets botox for her migraines). ..

He's never had episodes until this week. . . we've always thought they were just migraines. .but this week we've determined them to be clusters (his previous dr. had told him they were but we didn't "believe him" LOL). .

I just wish that there was something i could do..I hate the helpless feeling. .i love him so much and HATE to see him in pain

Thanks for listening everyone :)

~Amanda :)

Title: Re: New Here
Post by Peppermint on Oct 12^th, 2002, 12:48pm

Hi Redfraggle,
Sorry you have to be here and even sorrier that your loved one is suffering so.
What Margi said about reading SO very key- read, read, read, the buttons to the left, and the posts. One of the things I learned here about this is that unless you read as much as you can you won't have all the tools you could use.
Something else - which I found invaluable - ask your boyfriend -WHEN HE IS NOT HAVING A HEADACHE - what he wants you to do when he IS having one. Does need you to leave him completely alone? Does he want ice or heat? Does he want you be closeby but let him be, just so he knows you're there in case you need him? These are the things that can make a big difference, I think to help him maybe not feel worse on top of the pain he is already experiencing, particularly about the way you might perceive what he does during an attack. Also, read the effects that each medication may have - it's helped me to understand some things that are happening that seem out of control. The meds board is a good place to read about all that in particular.
I might be late with this post but I just wanted you to know you will find what you need here - this is a great group of people, experienced and knowledgeable and ready to help if they can... that includes me.
Keep posting on the progress...

Peppermint ;)

Title: Re: New Here
Post by Margi on Oct 12^th, 2002, 4:25pm

Peppermint, I gotta interject here and please don't take this as an insult. But I have to ask...how are you able to give Amanda all this advice? You've never actually lived with a clusterhead or seen an actual attack, right? If I'm wrong about that, forgive me, but from what I remember of your arrival here, you were involved in an internet relationship with a clusterhead in the past, that didn't ever culminate with a face-to-face meeting, right? You did really well in your post here, don't get me wrong. You gave her some really good advice.

All I'm asking is if you've learned all this stuff just from reading what's been written at this website? And I honestly do ask that question just out of interest. If you HAVE learned all this from the buttons on the left, archives, etc. then WOW! That's pretty cool. I guess all the stuff we've been writing there over the years actually IS getting read. If that's the case, gang, Peppermint is living proof that the stuff written here is accurate and very helpful information in the understanding of cluster headaches. That's very good news. :)

Peppermint, I hope you take this post in the spirit it is written, just a question - not anything else, ok?

And, Amanda - please hang in there, gal - we supporters can TOTALLY relate to that helpless feeling. It completely sucks, honey - there no two ways about it. One thing that helps us keep our sanity here is to try hard to take time for ourselves when we can. Even if it's just a bath with the door shut when he's between attacks, a workout at the gym, or a solitary walk. Just taking 20 minutes to yourself can really help YOU keep things in perspective and increase your mental strength to help him fight the beast. I'm at moxie_miss@hotmail.com if you need a shoulder. I've been a supporter for my husband for 16 years now. Nothing you can say will shock me or surprise me, ok? Clusterheads are truly unique.

Title: Re: New Here
Post by Peppermint on Oct 12^th, 2002, 6:02pm

Okay Margi - reasonable question.
1. My relationship with the clusterhead that you referred to has not been completely severed - it is a different kind of relationship now..and not ONLY over the internet. It's not what we were intending, however, that's what it is - for the time being. We postponed our trips to see eachother and there was a lot of stuff in between, that made us decide to wait - most of it related to CH and problems with meds, etc. So, we don't know what the future holds, that in itself is a mystery.
2. I've learned a lot from talking to my friend, hereforth referred to again as Angel.... we talk everyday on the phone, except when he's getting his HA, about a lot of things...including anything that i gather from here b/c as I recall saying before, he finds it too depressing (although I tried to convince him, this can be a good place for him to interact) thinking about it all the time. We discuss what's been on the board, anything new I've come across.. We talk about everything related to the headaches - and he is grateful and perpetually pleased that he ever mentioned this place to me, it HAS made quite a difference in how we relate, and who I am in his life, and who he is in mine. Up until I came to this website, and until we started talking about it, which was not exactly early on in the relationship, he couldn't really talk to anyone about his headaches, and his symptoms, what the meds do to him, the pain, his feelings about it all, how he thinks people see him, how he's lived his life because of it, etc... because it is extremely difficult for people to understand, and he feels most don't even bother trying, not his so-called friends, his past girlfriends, etc.
3. I have learned about many of the facts about CH from this site, and Angel - while I may not be there when he is having his headaches, has said that I AM a tremendous support and it DOES make a difference being able to talk to me about it. It makes a difference because I can make suggestions to him (if I call him at the wrong time) that he forgets about when he is feeling bad and can't think straight. It makes a difference that he knows that someone is trying to understand his pain - though I doubt in a million years I ever could - and cares about what he is going through. It matters that I know what a shadow is, that I am familiar with the the term KIP and other things of the kind. And I have learned (however minute it may be viewed) of how difficult it all is, not only from what is written here, but from Angel, who shares his experiences with me as well as the clusterheads here that I have spoken to who share their experiences with me and have opened up dialogue with me. I never expected that to happen, and on such a personal level.
So, while I DON'T know what it is to experience a cluster attack 2nd hand, in other words, in the same room with that person... I am a supporter, however on the outskirts of that term I may be viewed. I wouldn't ever PRETEND to have that kind of experience or knowledge and I have a great deal of respect for the supporters who do, and who LIVE this daily.
The helpless feeling still comes though....so I try to do what I can for anyone on this board who reaches out to me.
I hope this answers your question Margi, and it is taken in the spirit you intended, absolutely.
Amanda, this site IS a terrific source, as is OUCH, and all the links that follow. Its a lot of information and can be overwhelming but is again, invaluable. And if you haven't noticed, this is a very protective and loving family...I know you'll be welcomed and supported.

(Hope this wasn't too long...)
Peppermint

Title: Re: New Here
Post by Margi on Oct 12^th, 2002, 6:08pm

Good for you, Peppermint. You're a smart girl and a quick learner. And, I can totally understand your sufferer not wanting to talk about it because it really IS so depressing. That, and sometimes it feels like you're jinxing him if you talk about it. I do the same thing here with Mike. I can see the signs of another cycle looming and can see the 'cluster eyes' syndrome starting, but I quite often will just keep that to myself, for fear of jinxing him. I hear what you're saying, Peppermint.
(to further your studies, in case you haven't come across this yet, 'cluster eyes' is what happens when one pupil constricts and the other one dilates. it looks REALLY weird but quite often the sufferer isn't aware of it. it quite often will signal an impending attack or cycle. 'cluster eyes' scare the poop outta me. :( )
Keep up the good work, Peppermint. You're right - you ARE a good supporter to your friend.
:)

Title: Re: New Here
Post by Peppermint on Oct 12^th, 2002, 6:31pm

Well, thanks Margi, but ...I couldn't do anything less for the people I care about. :-[

Cluster eyes - he's told me about the one eye changing, not quite the way you put it though.... it must be terrifying to see that in someone else and know what's coming.

Margi - thanks.
Peppermint

Title: Re: New Here
Post by Ree on Oct 12^th, 2002, 10:48pm

you guys pretty much covered it... Amanda I commend your loyalty to your love and for finding us... Pep is right read as much as you can... Arm yourself with information and fight fight fight... We will all be here for you should you need our support... my email is Ree16angel@aol.com... I have been supporting my hubby dave since summer of 1988 and hes been suffering alot longer... we didnt have insurance for a few cycles and can relate to that too... good luck Ree

Title: Re: New Here
Post by redfraggle on Oct 14^th, 2002, 9:50am

Hey guys. . thanks to everyone for the advice and the offers of shoulders to lean on etc. . :) that means so much to me!!!

John and I went out Friday night and picked up some dramamine. . he's taken it two nights in a row and only had one attack each night (early in the am. . about 6 or so)

someone mentioned something about the dramamine being dangerous b/c you skip REM sleep. .anyone know anything about this??

Thank you all again. . :)

~Amanda :)

Title: Re: New Here
Post by Margi on Oct 14^th, 2002, 10:04am

Good Morning, Amanda :)

Yeah, dramamine shouldn't be taken for more than a few days in a row - so the pharamacists will tell you. It does prevent REM sleep and too much of that isn't good for you.

But, in my house, we believe being woken up 3 times a night to have a cluster isn't good for you either, so Mike will take some Dramamine (Gravol in Canada) to get thru a night when the normal cluster sleep deprivation gets to be too much. It will only work for a few days anyway but at that point in a cycle, ANY sleep is golden.

Glad it worked for your guy.

Title: Re: New Here
Post by Ree on Oct 14^th, 2002, 8:32pm

I have never heard that about dramamine... try benadryl if you cant take the dramamine it does the same kinda deal... Sleep is important... If he can trick the beast and get some sleep he will be stronger to take it on... remember it will end and remind him of that if he lets you assist... good luck lots of prayers going out to you love Ree