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        Supporter's Corner >> Supporter's Corner >> Learning To Be A Supporter...any help?
        
(Message started by: suzieQ on Sep 29^th, 2002, 9:18pm)

Title: Learning To Be A Supporter...any help?
Post by suzieQ on Sep 29^th, 2002, 9:18pm

Hi everyone! I just discovered this site a few days ago when my husband got CH's again. He hasn't had an episode in about three or four years. And before that, he had only had them twice before. (He was in his late 20's when diagnosed). They were a year apart, once a day, and only lasted for about a week each.

As of a few days ago, we thought it was mis-diagnosed back then and they were gone. But I guess not. :'(

This time it seems a lot worse. He has had them for eight days now. And this time he has gotten them a few times a day. They last about an hour total. But then the rest of the day he has what you guys call I guess shadows and is exhausted.

Anyway, I have a few questions maybe some of you can help me with. It is so nice to have a place to go if you need to ask a question or just vent. My husband's doctor prescribed Maxalt for pain. It doesn't do a thing.

Questions:
I read about water helping people. Does it really?
Does anyone take any herbal remedies? Do they help?
My husband doesn't want me to help him while he is having an attack. That is normal right?

All of you seem so nice and supportive to your spouse's. Does it ever get hard? I mean... I feel horrible saying this... but while they are in a cycle, is it like the cluster headaches completely take over their lives? I feel so bad for him. I can't understand the pain he is going through, but I can SEE it is very painful. But then sometimes I get annoyed because we have had to leave places, don't go somewhere because he feels like one is coming, or he is too tired from dealing with the pain he just went through. Is it horrible for me to feel that way? I am trying so hard to be supportive and understand what he is going through.

How long do they last? I mean weeks? What is the norm or average? ???

Anyway, I could probably go on and on with questions. I am so glad this site is here. I just wish I didn't have to find it again. I want to learn to be supportive to my husband as well as learn to help others support their loved ones as well. I guess it will take some time.

Thanks in advance for any help or suggestions. :-*

-suzie

Title: Re: Learning To Be A Supporter...any help?
Post by BobG on Sep 29^th, 2002, 9:53pm

Maxalt has been used by many people here. Verapamil seems to be the preventative of choice though. Imitrex is the abortive of choice.

Water? Many have tried it. Some successful, some not.

Did you read under the waterX3 button on the left?

Herbal remedies have been discussed here many times. IMHO, it's junk science but, I'm not a scientist.

When your husband says not to help him during an attack, believe him. Most sufferer want to be left completely alone. No talking, no touching. Just leave the room. Sounds mean but that's just the way it is. What you can do is to ask him what he wants you to do. Ask him when is NOT having an attack or even shadows.

Having your life come to a stand still during cluster season is a bitch but it happens to us all. The sufferer gets to the point of being afraid to leave the house because that's a safe place to be during an attack. The medicine is at home as is the ice pack and oxygen. The sufferer will also become afraid to go to sleep because bad attacks come on during REM sleep mode. The more sleep that is lost the better the chance of getting hit.

The cluster cycle can last from a week to years, but 6 to 8 weeks is about normal. There may be a break of a year, 2 years, maybe more but they will be back. Sorry to have to say that.

The most important thing for a supporter to remember is that it is not your fault. It is not your fault the pain is there. It is not your fault if the medicine doesn't work. It is not your fault the the sufferer is losing sleep.

And remember, nobody has ever died from cluster headaches. They may have wanted to but they didn't. And they can be controlled and will (someday) go away.

Normal? The only thing normal about clusters is there is no normal.

Title: Re: Learning To Be A Supporter...any help?
Post by Ree on Sep 30^th, 2002, 9:52pm

Hi Suzy.... wish I wasnt so tired Iwould post more. I have had a hard week myself... I will go for the important question first... Yes it is hard being a Cluster supporter... And as long as your hubby is eposodic and not chronic remember it will end. They will go away. You need to convince him of that every attack. My husband is on Neurontin for a preventative and that is keeping them at bay this time his cycle snuck up on him at work one day while resting. (he works 1am-9am) He is having a very different bout with them this time. If your hubby doesnt want any help... He is probably in control of his own attacks... That is ok as long as you check on him periodically. Ask him if he needs anything. Ie: icepack...hotpack... tea...Dont take it personally if he yells or is angry. If he goes overboard hit him with something BIG...LOL (a little humor here)Be sure you are intune with a Neurologist that knows Cluster Headache also. As for the herbal remedys some people will take Feverfew... works for some (NOT US)... some take Melatonin to sleep... works for some (NOT US) My husband Dave takes Clonezapam to sleep. The water treatment worked for Dave once in the beginning of his last cycle... but there is also a danger of drinking too much water if you have some health conditions so be careful with that too... One answer the hardest to answer is How long do they last? Everyones cycle is different and actually Dave's is always different he has never had two cycles the same. Attitude is key. You can let the Clusters take over your family or NOT and FIGHT BACK with all your strength... I have faith in you... you will be strong... keep coming here. Let us know how we can help you... I am going to bed... This post is longer than I expected. Hope I helped, again Welcome.():)ree

Title: Re: Learning To Be A Supporter...any help?
Post by Cathi on Oct 1^st, 2002, 11:04am

Hey, Ree- Just me here, taking notes....you are AWESOME! Dave is lucky to have you in his corner!
Wish I could invite that nasty slimeball (not Dave- the OTHER guy) over for some diazinon-laced dinner- perhaps a nice roast beast- with a bomb in it?

SuzieQ- Listen to the advice- this is great info they're giving you- stay strong, and know there's always someone around to talk to. Mostly, though, listen to the supporters who have been around this thing for awhile. I'll certainly extend that invite- what's 2 Nasty suckers- rather than just one?

I'll keep my fingers crossed for you both!
Cathi

Title: Re: Learning To Be A Supporter...any help?
Post by Margi on Oct 1^st, 2002, 11:29am

Hi Suzie
I can't really improve on anything Bob or Ree have told you here. They've both done an awesome job of telling it like it is.

You might want to try ice, as well, to relieve pain. Those gel-filled bags that never really quite freeze give my husband some relief if he lays it on the back of his neck at onset. Also, read about oxygen therapy - it's a very effective abortive. VERY important to get him in to a cluster knowledgeable neuro a.s.a.p. There is a list of them over at the OUCH website, under recommended doctors.

Also, please visit us at the Family Services Team, and click on the Supporters Stories button. This is a "fictional" story I wrote, based on the many truths that we supporters live. Yes, we do have to put our lives totally on hold when the cluster beast visits, but we all get through it and you will too.

Please feel free to email any of us if you need a shoulder. I'm at moxie_miss@hotmail.com if you need anything.

Hang in there, friend.

Title: Re: Learning To Be A Supporter...any help?
Post by suzieQ on Oct 1^st, 2002, 7:21pm

Thanks so much you guys!! :D I am soooo... happy to have found this site! I really appreciate all the well wishes and advice. The site itself, and all of you that replied to me, have given my husband and I so much information. Some of course, we really don't like to hear, because it is so sad to know that people actually go through this for the rest of their lives. But it also has informed us of things we had no idea about and have learned so much.

I am definitely going to try all the things you guys suggested. Anthony (that is my husband) is still hanging in there. Its been about 10 days now. He called his GP today to get a referral to a Neuro on Monday. I'll let you know how that goes because I will probably have more questions. He didn't have an attack last night and we were so happy. We thought maybe it was over. But he got one at work today for the first time (usually his are in the late evening and early morning hours when asleep). He didn't know how to handle everyone coming up to him and asking if he was okay while he was right in the middle of one. Someone even asked him if he needed a ride home. He couldn't speak, and then had to apologize to everyone afterward.

Anyway, again thank you all so much!! You are all helping me learn to be a true clusterhead supporter!
-Suzie

Title: Re: Learning To Be A Supporter...any help?
Post by Cathi on Oct 1^st, 2002, 7:58pm

Hey, SuzieQ-
Yeah for a Neuro-I hope you get in soon- as far as getting hit at work- that's how that mean-spirited, nasty curmudgeon is.....how nice his coworkers care. Maybe you can make a sign he can post-IF it ever happens again.....gone for 02- back in a moment......
Be strong, Suze- and take care of YOU, while you take care of him- send up a smoke signal if you need to- there's someone here to talk to!
Give each other a big old sloppy smooch- and have a peaceful night.
Cathi

Title: Re: Learning To Be A Supporter...any help?
Post by Margi on Oct 2^nd, 2002, 8:55am

Morning Suzie,

In case you two didn't do the sloppy kiss and peaceful night thing (don't we all wish THAT was a reality in the middle of a cluster cycle?), you might want to try Anthony on dramamine before bed. You can get it over the counter and sometimes it might help him actually get through the night without being attacked. It doesn't let him get into REM sleep, which is when most nighttime attacks occur.

Also, there is a form over at the OUCH site that our sufferers can give to their employees in order to avoid having to explain what's going on, mid-attack. You can find it here:

http://www.clusterheadaches.org/resources/emp.htm

This is courtesy of our UK OUCH folks, Simon Bower over there put this together and I think a lot of people are having success with it.

And, if you get any of the traditional run-around from the neuro's booking staff (we've all been THERE ::)), mention to them that your hubby has cluster headaches and can NOT wait six months to be seen. Let us know if this happens (I really hope it doesn't) and we can give you a fast course in Receptionist Cluster Education 101, ok?

I hope last night went ok for you two.

Title: Re: Learning To Be A Supporter...any help?
Post by skettico on Oct 8^th, 2002, 11:01am

Hello Suzie.....

I am also brand new to this site, but through the help of these very patient and helpful people it gets easier I promise.

My clusterhead has been that way for 8 yrs. And I can tell you that when he says leave him alone DO IT!!! It is much more important to do that than to ask questions, I still ask every once in a while and it's just not something they need to deal with. This website taught me all the questions that need to be asked, and you should do it before an attack so you are prepared when they come. Also, yours may, I am not sure but mine does, pace, moan, become a little violent and even cry....I have found the best thing to do is just sit there. Don't move, just sit there and let them know with your prescence that you are there for them.

At my house I am working on getting a KIP chart up on the wall so no words need to be exchanged when one comes on, just point to how big yours is and the definition of what should be done to help is right there without interrupting the ch. There is also sign language, I am trying to get that going in the house also, we do a closed fist for that's good, and an oopen palm for that's bad......that way if I am doing something on the list (i.e. rubbing shoulders) and today is just not the day for that he can tell me without speaking.

O2 is a big winner in our house for an abortive...it doesn't cure the ch, but it does knock an hour and a half down to 10-30 minutes. Also, this may sound funny but Excedrine Migrane works for Mike during the day.....odd, but I don't think any of us ask questions as to why. If it works, it works, who cares.

Every one is different but I have noticed that most ch goes for an hour to three and then they are done, I found that a count down is good for this. I asked my clusterhead if he would like to be notified when it's almost over. And I think it puts light at the end of the pain tunnel. I usually wait till he only has about 20 minutes left and then start letting him know, "babe, you''ve only got 20 minutes left" now you need to ask him about this first cause that can be threatening if he doesn't want to know, so just ask. I had about a three hour talk with mine when we started doing all this stuff in the house. It helped though.

Ahhhhh, the dreaded having to leave what you are doing. That one was hard for me too. Having to stop what you are doing for the ch can come off brash, but don't fret, there may be a way around this. What you need to do is time them...when they come, how long they last and what he is doing directly before the ch hits. This way you can try to cut don anything that may be adding to them AND work a schedule around the headaches. How ever, if they are sporratic, like Michael's can be, you just have to go with it. Don't give up though, just keep trying. Don't become a hermit. Keep going out. those things can take over, don't let them. Keep fighting, keep going out and remember it's pain, something very unbearable but not life threatening. I see mine get them and I want to reach in his little head and pull out all the pain, but since there really is no way to do that, you just do everything yu can to make it bearable and then live life, and I'm sure yours knows how much you care and feels bad about the beast, KEEP YOUR CHIN UP! It's probably what keeps his high...... :)

I hope that your goes into REmission soon and all is well. In the mean time, come here ask questions and hold on tight. It's a bumpy ride but we all fight for our loved ones and hope the fight will end soon and remission will be permenant.

Good luck Suzie, and my e mail is posted if you need anything.

Title: Re: Learning To Be A Supporter...any help?
Post by Margi on Oct 8^th, 2002, 11:27am

Another clusterhead named Mike, huh? I got one too. :) Sounds like you're doing a really good job of supporting your Mike, Skettico.

I had to smile, though, at your suggestion of sign language. If I'm rubbing my Mike's shoulders and it's not helping, he just walks away from me and continues his battle with the Beast. It works for us. But, I sure know what hand signal MOST clusterheads would give if they were having questions fired at them during an attack (and it sure wouldn't be an open palm! LOL).

Also, your scientific approach of putting a Kip scale on the wall is quite unique. Wouldn't that be a contant reminder for him when he's pain free? I'm not sure that would work for everyone. Traditionally, these guys and gals just want to forget that they are clusterheads when they're not in pain.

Not tryin to rag on you at all, Skettico. Keep up the great work!! So nice to see people working together to find what works for them.
:)

Title: Re: Learning To Be A Supporter...any help?
Post by skettico on Oct 8^th, 2002, 11:40am

LOL I agree completely with the hand gesture.....but the KIP scale on the wall idea hasn't been put up yet due to what you said, we think the same way. I was thinking we'll just pull out the list when he starts so we know what to do.......no insult taken darlin', we're all here to help eachother. And yeah another Mike, There seems to be quite a few of them.
;D

Title: Re: Learning To Be A Supporter...any help?
Post by Margi on Oct 8^th, 2002, 11:49am

Attagirl, Skettico - i'm so glad you took my post the right way. With the mood on the rest of the board these days it's gettin freakin SCARY to say what's on our minds anymore. Seems we've got a lot of cluster wannabes and groupies here lately who think they have a new plan on how to live in Clusteropolis. ::)

Welcome to the fold, girl - glad to hear your Mike is pain free these days. Let's hope his REmission lasts. And, between us supporters? SUBmission is good too. ;)

Title: Re: Learning To Be A Supporter...any help?
Post by skettico on Oct 8^th, 2002, 11:52am

Thanks Margi.........=)

You're great, now all we gotta do is get Suzie to where we are. Cause I was the same way so I know how she feels......

Title: Re: Learning To Be A Supporter...any help?
Post by Margi on Oct 8^th, 2002, 12:02pm

Sweetie, we've all be where Suzie is (well, most of us, anyways). Helping each other cope, sufferers and supporters alike, really IS what this website is all about.

I will never forget the morning I found this site. It felt like an oasis in the desert. We'd run out of rope in our house and ch.com has an endless supply. Too cool. And so nice to give back what we've been given. Bonnie Woods (an awesome supporter who just organized our convention) sent me a deal on the weekend that said something to the effect that she should not go thru life with a catcher's mitt on all the time. That sometimes we should throw something back. It feels good to do that. :)

Title: Re: Learning To Be A Supporter...any help?
Post by skettico on Oct 8^th, 2002, 12:15pm

See, that's what it's all about....=) Good for you!!!

Title: Re: Learning To Be A Supporter...any help?
Post by suzieQ on Oct 8^th, 2002, 6:04pm

Hi again everyone! I wanted to thank you all again for being so supportive. Thanks for replying Skettico and for all your advice and input. I REALLY appreciate it!

I wanted to just quickly update all of you where Anthony and I are. He got a CAT scan on Friday and went to the Neuro on Monday. The Neuro confirmed what we pretty much knew... He is definitely a clusterhead! We were upset, but I guess things could be way worse. CH's aren't fatal at least!

Anyway, he put him on a steroid for the next five days to try to end the cycle. He also prescribed him a nasal spray medication for pain. We'll see how it all goes. We are hoping the cycle stops. He didn't have a CH in two days, then He had a great day on Saturday, felt like himself. But then the beast came out that night. We think it was triggered by a beer he had during the day. So for now we are just waiting... He was hit twice last night. We are hoping the steroid stops this thing in its tracks.

Again, thanks so much to all of you!! I wish I could write more but my 1 and a half year old daughter is mouse clicking and pushing all the keys.

Talk to you again soon.

-Suzie

Title: Re: Learning To Be A Supporter...any help?
Post by Margi on Oct 8^th, 2002, 6:34pm

That's very good news, Suzie - I'm glad you've found a neuro that seems to know his stuff. Although, that's a pretty short prednisone burst....i hope it works, too.

Keep up the great support, Suzie and please keep us posted.

Title: Re: Learning To Be A Supporter...any help?
Post by Georgia on Oct 23^rd, 2002, 2:46am

for me personally, as a sufferer - I love the idea of the kip scale on the wall with the things you need/want listed there. I know that when I am in the midst of a nasty ch, I can not speak....words are mising from my brain...coherent speech will not form...I am too consumed by the pain to think I guess...this also effects my ability to get what I want...getting a bag of ice from the freezer seems way too complicated sometimes...there have been occasions where den has said to me, did you use _____ or did you take _____ and I didnt because I couldn't get to them or whatever...I just get too stupid and too trapped in my own private hell...the thought of den bringing me the list or me being able to mark it or point to it sounds like it would make things a lot easier, for both of us...(i think one of the choices on there should be "i love you leave me the fuck alone"). or maybe have little pictures on there...like a piece of ice or a neck rub or oxygen....that way my brain wouldnt have to try to decifer words either...(i know this post sounds horrid...i am exhausted and am too afraid to sleep...sorry for the babble) As for it reminding me of ch all the time...I think about ch all the time anyway...if I am not in the middle of a ch, then I am sore from one, or shadowing into one, or dreading the next one or reading the board about how to kill them.....in my twisted logic it seems that if sufferers didnt want to think about ch when they werent in cycle or in the midst of one...this board would be a very empty place indeed...my point is, it wouldn't bother me seeing it on the wall....but that is a very personal thing and I would suggest asking your sufferer how they would feel about it (or keep it in a drawer and pull it out only when they have an attack) ok, I will shut up now. Have I mentioned yet today that I think supporters are the shit?! (uhh, thats a good thing, a really good thing) I love you guys..night

Title: Re: Learning To Be A Supporter...any help?
Post by Svenn on Oct 23^rd, 2002, 4:46am

The best way for you supporters to help us is as follow:

1,
During a battle just let us know that you are there if we need you.
2,
Dont let us running or ruin your life by our "funny behaviour"
3,
Most importent is to be yourself

Think this covers it all

all the best from Svenn

Title: Re: Learning To Be A Supporter...any help?
Post by Ree on Oct 24^th, 2002, 9:56pm

I AM THE SHIT!!! YOU ARE SO RIGHT G... I FEEL LIKE POOP TONIGHT BUT YOU MADE ME FEEL SO GOOD. Where does a supporter go when she runs out of steam?? :-/ I think that has happened to me tonight. Thanks again honey I think you are the shit too... cool... Hi Den! take care of each other... now Im off to bed to take care of meree

Title: Re: Learning To Be A Supporter...any help?
Post by cootie on Oct 28^th, 2002, 9:45am

Suzie......Hope things are goin well for you fighting off the cycle......I just got back on here so it's been a few days. I also got annoyed when hubby would have attacks comeing on and would just sit and stare out the window or at the tv for HOURS while he was haveing an attack...I felt guilty I wasn't being sympathetic enuff but there really isn't anything I can do except be sure he has his meds stuff close at hand whatever else he mite 'yell' for.....I hated the attacks....but then 'so does he' ! He waited a few days to long to get back on his meds this episode....it'd been almost 3 years since last bout and he nailed that cycle pretty fast and didn't have to suffer very long and broke the cycle....not as lucky this time 'round. He hoped it was just sinus this time till he got a real banger....of course when that happens it is usually on a Sunday and prescriptions ran out and can't call the doctor..arghhhh ! I have learned to keep refills 'filled' and stored so even tho he breaks the cycle he will have them available...even if there a couple years old settin "I think" ( ???) there still ok to use and better then nothing till you can run back to the pharamacy or get ahold of the doctor and get in. Ours was out of twon when the attacks got bad....gotta be prepared with this stuff goin on ! Rite now it's been about 3 weeks since they started back up and he's been able to fight off the bangers for a week but still has the shadows and still has the work and family stress hovering so we know it is still a possibility he will get caught with one if he doesn't keep on the meds at first sign at least and is still doin the verapimil like doc wanted him to do so long after the attacks....(and he does the imitrex pills and nasal when needed or at certain times to ward off attacks and HOPE they work). Life as we knew it was turned upside down....it's aweful when an attack starts and you have company or are with a group out somewhere....they don't understand they can NOT funtion when they get attacks what so ever...it's aweful....I still don't always know what to tell people if here visiting...they don't understand what's going on !!! Good luck.......cootie

Title: Re: Learning To Be A Supporter...any help?
Post by Margi on Oct 28^th, 2002, 10:20am

Hi Cootie,
Two things. Please be careful with expired meds. If at all possible, keep the prescriptions open and on file at the drugstore - much safer that way. If you see hubby going into cycle, and I'm sure you know the signs, fill the prescriptions as he needs them. Get them on file at a 24 hour drug store if possible, so the Sunday thing won't be an issue.

And, as to what to 'tell people'... well, FIRST make sure hubby has a place to go when he's clustering, away from company. Somewhere where he feels comfortable and can be alone. You know you can't really help him during an attack, other that to just be there if he calls you. It's really a perfect opportunity, Cootie - to get the word out about clusters. TELL your company what he's got. TELL them he's having a cluster attack. I always avoid using the word 'headache' - (it trivializes what is really going on). EXPLAIN what clusters are, Cootie, and what your husband is going through. TALK about OUCH, what we're doing to promote awareness. Always seize an opportunity to talk about clusters. It will only EVER be with public recognition that we do someday reach a cure.

Title: Re: Learning To Be A Supporter...any help?
Post by cootie on Oct 28^th, 2002, 5:41pm

Thanx for the advice..I think we are still doing things the hard way or wrong around here......I think insurence is gonna give us grief with the meds.....just got a letter from them after an over ride (I posted my frustration in the general message board area...bare with me I am new at this message board stuff but it is wonderful I must say !!!). First big boo-boo is goin thru a department store pharmacy cuz they will not let any other pharmacy call them for your script to handle it or move it....and the pharmacy part is not open 24 hours nor on Sundays even tho the store is. I ran into a problem with meds for myself where I only had so much time to refill or they were void....I think the imitrex has a one year date for the script and he has had 2 to 3 year cycles. I gotta come up with a better plan don't I ? He was taken Verapimil that was dated '99....(he panic's when the cycle starts up again and understandably so)... the neo wanted him to come back so many times a year or he could not get in or scripts and he got frustrated with him and wouldn't go....plus it was a long ways away and try to meet there hours with his. Then a new one started in town here but he has several month waiting list !!! Yeah....we have been enligtening ALOT of people about the CH esp this cycle. Most never had a clue !!! Our doc is an internalist but he keeps up to date on this condition and has alot of interest in it and has been wonderful. Thanks for you help.....I appreciate it !! cootie

Title: Re: Learning To Be A Supporter...any help?
Post by Ree on Oct 28^th, 2002, 9:20pm

Margi I also referr to Daves CH as ATTACKS so that they don't get discounted... We also have had the Holiday CH so that he has to hide somewhere... The one time I think the family really had the opportunity to see that we weren't kidding, was at my sis in laws at Christmas during that last cycle. She tried to touch his head affectionately while he was getting an attack... We have since learned not to be around people...
Dave has also taken expired meds the doc said at the very worst they would be weak and probably wouldnt work... but we try to keep his scripts up to date too... You are probably right about that... Hope everyone has a better week. I know I will try to............ ree

Title: Re: Learning To Be A Supporter...any help?
Post by Margi on Oct 29^th, 2002, 9:30am

LOL Ree....I think we should have that put on a t-shirt!!

Cluster Headaches: We're NOT kidding!

(Of course, if DJ has any say about this, there will be a word added to that slogan. ;))

She tried to touch his HEAD while he was in an attack? Yikes!! Why not just lick your finger and stick it in a light socket? :o