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Topic: support (Read 374 times) |
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princess922
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I am looking for anyone who can help me get through my fiancee' getting these headaches, I find that I ride an emotional rollercoaster when he gets them, and I feel very out of control..I find it so difficult to sit and not be able to do anything to help. We just filled 3 RX's to try and help him deal with these, he has been getting them since he was 12 years old, he is now 40
I jsut need someone to please tell me I'm not going insane, do you know that the Dr. relied on my research to try and help him??? I have been researching these for almost 5 years now, there is much more info on them now then there was when I started but they are still so unpredictable.
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seasonalboomer
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Re: support
« Reply #1 on: Jan 31st, 2006, 12:45pm » |
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your not going insane. you and your fiance will always need to be out in front with information to bring to your doctor and things can get better. they will always be unpredictable but life can be managed. CH.com and the info that you can find here can help you achieve a life that works, even with CH. hang out and get your fiance to hang out. He needs to also be doing the research and not depending on you to solve his CH problems.
how's that?
there are lots of really great supporters for you to get advice from here (I'm a sufferer) that can give you some advice on how to work with your fiance' in way that is beneficial to both of you. Check the supporter threads and there's lots to work with there.
good luck.
Scott
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princess922
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Re: support
« Reply #2 on: Jan 31st, 2006, 1:07pm » |
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The dr. put him on Topamax, last week, And I am just not comfortable with him taking this medication, I have serious concerns about the side effects.
Mike(my fiancee) was assaulted 3 years ago was struck in the back of the head with a pipe and in a coma for 4 weeks, so I am very protective of what meds they give him, I had researched Topamax, and voiced concerns about the side effect, because he is also on Adderall due to his injury, but the Dr. assured me that it would help. but the pain when he is in a cycle(which we are in now) concentrates in his neck at times, has anyone ever had that? It happen twice in the past 3 weeks, but never before this?
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vig
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Re: support
« Reply #3 on: Jan 31st, 2006, 1:08pm » |
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not only is there great teCHnical info here, but there are some great supporters that know how best to cope with both sides....
A great supporter is just that...
GREAT!!!
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never, Never, NEVER quit. -Winston Churchill
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E-Double
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Re: support
« Reply #4 on: Jan 31st, 2006, 1:49pm » |
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Hiya
I personally did not do very well on Topawhat???? 
I am currently trying to detox off all of my medications(personal choice) however here are some really good resources to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall. (Maybe I should start folowing my own advice again hahahaha!)
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
Eric
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princess922
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Re: support
« Reply #5 on: Jan 31st, 2006, 2:22pm » |
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Thanks for the info!!!!! I take all that I can get my hands on!!!!!! Have you heard of Relpax? That is a RX the the Dr. gave us, that I haven't filled because I don't know anything about it, and I will not give him anything that I am not informed about!! (A little overprotective much??!!) We have also found something called Migrastic that worked for about a year, it is peppermint oil and lavender oil that is rubbed on the temple and if the CH is caught early enough CAN abort. But the effects have started to wear off, so we are back to try this try that, how do you feel etc.!!!
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BarbaraD
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Re: support
« Reply #6 on: Jan 31st, 2006, 2:32pm » |
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Princess,
I'm one of the success stories with topamax. BUT... I take the full dose at night (and not in the daytime as the doctors say to do) and don't experience the side effects that so many do. I'm chronic and topamax has not stopped my CH altogether, but it was like night and day when I got on it (back in 99). I call it my miracle drug. I've been up to 400mg a day and am now leveled off to 100mg a day and am reducing that to 50mg because I'm doing Kudzu (a herb that seems to be helping).
But we're all different.
You might also try O2 (15 liters a minute with a non-rebreathable mask - the mask is VERY important - read up on that one). That seems to help MOST CHers.
There is also Melatonin (9-12mg) at night to help get thru the REM sleep, but it also takes a couple of weeks to BEGIN working. It's NOT instant. That works for a lot of us to keep down the exhaustion of the day time hits.
What is your fiancee's attitude. Seems to me you're doing all the work and he's feeling sorry for himself. Get him on this board. Let him know he's NOT the only one going thru these things. Those of us who suffer know what he's going thru (and only another CHer can UNDERSTAND - no matter how hard a supporter tries).
Bless you for trying to help. I don't know what we'd do without our supporters. But get his rear on this MB and let us handle him for a while.
Hugs BD
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princess922
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Re: support
« Reply #7 on: Jan 31st, 2006, 2:58pm » |
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Actually its funny that you say that, we work together and I was just telling him how wonderful this is and he is very excitied to get on here and talk to people who know what he is going through he has always felt like he was alone in all of this, he never met anyone who suffered from CH like he does!!! And you are 100% rght, supporters will never know what it is like to have these! But gaurenteed, I will always thurst for knowledge, in order to try and help him, and will do anything in my power to help him!!
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Jonny
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Re: support
« Reply #8 on: Jan 31st, 2006, 3:07pm » |
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on Jan 31st, 2006, 2:58pm, princess922 wrote:| But gaurenteed, I will always thurst for knowledge, in order to try and help him, and will do anything in my power to help him!! |
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That tells me all I need to know about you, Missy!
YOU ROCK!!!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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sandie99
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Re: support
« Reply #9 on: Jan 31st, 2006, 3:15pm » |
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You're a wonderful supporter.  I wish I'd had one like you when ch came into my life.
I think it's wise that you want to know about meds, it's important to be aware. Now relax, neither you nor your fiance is going insane. Ch does pretty good job at driving one near something like that, though.
When your fiance comes to this board, let us know. Here are lots of couples and families on board.
Best wishes & PF time to your fiance!
Wishes,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
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princess922
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Re: support
« Reply #10 on: Jan 31st, 2006, 3:25pm » |
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You are all so wonderful, and he and I are very anxious to get to know all of you and to support and help as best we can, as you all have done for me today, I can't even tell you how great I feel right now, I do not feel isolated anymore!
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BarbaraD
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Re: support
« Reply #11 on: Jan 31st, 2006, 3:36pm » |
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There's someone here 24/7 for support. Use us - abuse us - we're used to it.
Only another CHer can laugh at ourselves. And the laughter keeps us from going insane.
Welcome to Clusterville and your new family. We meet and greet every chance we get and that's an experience in itself. Don't miss an opportunity to meet a clusterhead. I haven't checked your profile to see where you live, but probably there's someone near you that you can meet. The one-on-one is great. I've been lucky enough to meet hundreds of these nut cases and haven't met an axe murderer yet.
Get fiancee on here toot sweet (that's French for 'right now' - didn't know I could speak French did ya).
Hugs BD
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Charlie
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Re: support
« Reply #12 on: Jan 31st, 2006, 3:44pm » |
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So glad you are such a good supporter. It's zero fun to witness and frustrating. The good thing is that it doesn't doesn't do physical harm.
Middle age sometimes, and I mean only sometimes, is when some lucky people such as I, have had a break. I was 45 when mine disappeared. It's 14 years now. Mine began when I was 23 in 1969 but I was lucky enough to have found considerable relief from this:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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princess922
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Re: support
« Reply #13 on: Jan 31st, 2006, 4:18pm » |
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I will have him try it, we had one a couple of weeks ago that lasted 4 1/2 hours....it was a trying time, because nothing was helping, I wish I would have known about this then!!!! Luckily for me, he is open to try anything and is really not into taking all kinds of meds, but you know that you WILL do whatever it takes to make the pain subside!! right now initrex is helping but he was using it about 3 years ago and it stopped helping after a while, so we moved on to other alternatives, and now back to imitrex!
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maffumatt
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He is a lucky man to have you in his life.......don't let him forget it.
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Jimi
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Re: support
« Reply #15 on: Jan 31st, 2006, 4:55pm » |
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Hi princess...Relpax is the latest triptan.Similiar to Imetrex. Usually used for migraines. Supposed to be a little longer lasting. Even if it worked, it would disolved too slow I would think. The only thing I would consider would be to take one before he went to bed and see if it helps the night clusters.
I am with Eric..02 is the thing to pursue at this point I would think.
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Sandy_C
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Re: support
« Reply #16 on: Jan 31st, 2006, 5:51pm » |
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Hi Princess, welcome to our crazy family. Bring your guy on board here, he needs to get in to this family first hand, but he also needs you to stick here as well. Some of us would be in the grave by now if it weren't for our supporters. As Jonny said, "YOU ROCK!".
There is more combined knowledge about CH on this board than you will ever find with any doctor. Read everything. Ask questions (there are no stupid questions except the ones you don't ask), read and print out the tips on the left and take them to the doc. And, above all, demand 02. That one thing seems to be of major help to many CH sufferers.
Someone is ALWAYS here. Just log on and let go.
Sandy
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Opus
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Re: support
« Reply #17 on: Jan 31st, 2006, 6:22pm » |
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on Jan 31st, 2006, 2:22pm, princess922 wrote:| We have also found something called Migrastic that worked for about a year, it is peppermint oil and lavender oil that is rubbed on the temple and if the CH is caught early enough CAN abort. But the effects have started to wear off, so we are back to try this try that, how do you feel etc.!!! |
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I used an oil mixture called M-graine, two drops of that, and two drops of peppermint oil on one hand, then I rub them together and inhaled with my nose through my couped hands. For me the oils stopped working after a year. It seems treatments to stop working after a while.
on Jan 31st, 2006, 4:18pm, princess922 wrote:| I will have him try it, we had one a couple of weeks ago that lasted 4 1/2 hours....it was a trying time, because nothing was helping, I wish I would have known about this then!!!! Luckily for me, he is open to try anything and is really not into taking all kinds of meds, but you know that you WILL do whatever it takes to make the pain subside!! right now initrex is helping but he was using it about 3 years ago and it stopped helping after a while, so we moved on to other alternatives, and now back to imitrex! |
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We all get Cluster attacks that are unabort-able from time to time. All you can do is ride it out. Is he using Imitrex injections, if they are causing rebound ha's or he can't get enough see the Imitrex tip to the left. I get vials and needles to make splitting shots easier.
I see you are already posting the supporters corner, looks like you know your way around here
Opus/Paul
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Linda_Howell
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Re: support
« Reply #18 on: Jan 31st, 2006, 7:37pm » |
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Quote:| I jsut need someone to please tell me I'm not going insane |
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You are not going insane.
However if you really think you need to there are a lot of brain-damaged people here who can help you with that. (Just a little humor to help lighten up what must seem over-whelming to you right now)
Everyone here has given you good advice but if you feel you would like to talk to someone one-on-one or need more help in your research consider contacting me at Family Services. (link below)
I have a wonderful team of 3 others, 2 of which are supporters as you are. You seem to be doing a wonderful job so far and I'm sending you a big cyber-hug.
Linda
http://www.ouch-us.org/familysvs/familysvs1.shtml
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thebbz
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Re: support
« Reply #19 on: Jan 31st, 2006, 8:08pm » |
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I don't know how my wife does it either  You rock!
You are not insane. Get the future hubby on here and get knowed up!
Switching up triptans is not unusual. Do not mix them. Wait 24 hours in between. The demon has a way of getting around therapy's. What work once will not work the next time.
Hang in there ....and you ROCK.
jb
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Woobie
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Re: support
« Reply #20 on: Feb 2nd, 2006, 4:46am » |
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on Jan 31st, 2006, 2:22pm, princess922 wrote:| I haven't filled because I don't know anything about it, and I will not give him anything that I am not informed about!! (A little overprotective much??!!) |
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Absolutely NOT. You can never be too careful with prescriptions.
I am a firm believer that us supporters HAVE to be our clusterhead's advocate. That's our job.
When they're in cycle - at least MY clusterhead, they dont think too straight.
Ramon will take anything anyone gives him if he thinks it will get rid of them. I have to be there to remind him AND his doctor what has made him physically sick in the past, what he's allergic to, and his other conditions............
One thing I had to learn to do - is ask him what he wants me to do when he gets hit. Does he want me in the room... or to be left alone. Does he want ice? Does he want me to hold him, does he want me to rub his neck.
Then DO it. Even if that means leaving him alone. And sometimes, that's the hardest thing to do.
Mine wants coffee and a smoke afterwards, and I damned sure got it ready for him .........
little things like that make all the difference to them.
No - you are not insane. I know how it can make you feel that way. All you can do is help him thru it without getting in his way.
One thing - it's cool your doctor listened to you ... a lot of doctors get pissy when you tell them you know more than they do. We happen to have one that listens to ME too........... 
nice to meet another supporter...........
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mrs mac
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Re: support
« Reply #21 on: Feb 2nd, 2006, 5:47am » |
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hey Princess
i am a supporter too, and know just how you feel!!!
no, you are definately not going insane!!!
it is one of the hardest things in the world, to watch the person you love so much, go through so much pain!!!!
i don't think it ever gets any easier, that's why this place is a god send to all of us, sufferers as well as supporters!!
i can't add any thing to all the advice you have already had!!
i just wanted to let you know, that you will never ever be alone with this any more, cause you have all these good people here to help you now!!!
you sound like a wonderful person, and i am sure your fiancee loves you even more for being with him through his hardest times!!!
keep coming to the boards and ask any questions you have, no matter how silly they sound, there will always be someone here to help!!!
take good care, and let us know how things go!!!
sending lots of hugs your way!!!
sandra xxxxxx
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