Click this link to read a post I like on the clusterheadaches.com message board...

Jareds Girl

CH.com Newbie

Offline

I Love CH.com!

Posts: 7

Im Brand New and a Newly Wed To a CH Sufferer!
Nov 17^th, 2010 at 8:52pm

Hi All! Just thought I would get on here and educate myself a little more about this condition. I have lived with Jared for 2 years and we just tied the knot in october of this year!! YaY! Anyway that being said I have seen this affect him. He is in a really bad cycle right now. In fact he is on temp disability because he drives a truck for a living .. Not a real good thing to be driving and get a "hit". He has been off work for 2 or 3 weeks and they are not getting any better. We have changed drs and meds. Just got on the o2.. He is on verapimil.. treximet... sometimes imitrex and prednisone. He has been a sufferer for 6 or 7 years. I really hate to wake up to him moaning and rocking! I wish I could do something for him. If I breathe it disturbes him! So Im rambling.. Just thought I would come by and post. Im sure I will have to rant on here in the future. All of you are helpful. He just found this site not long ago and thanks to yall... He is going to try the melatonin idea tonight. Maybe we will sleep tonight... Tired in texas Wink

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Im Brand New and a Newly Wed To a CH Sufferer! Reply #1 - Nov 17^th, 2010 at 9:03pm We welcome our supporters with open arms!! My wife found this board for me many years ago and saved my sanity. Bless your heart for jumping on in! Joe
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

Kate in Oz

CH.com Hall of Famer

Offline

Posts: 633
Australia
Gender: female

Re: Im Brand New and a Newly Wed To a CH Sufferer!
Reply #2 - Nov 18^th, 2010 at 5:19am

Hey Jared's Girl,

Just wanted to say thank you so much for taking the time to get on here and learn some more about what your man is going through. There's no doubt about it, this is a shite thing to have to deal with... but if you read around you will see just how many of us have been helped by this place. So much support and advice - for supporters too!!!

Anway just wanted to say thanks, he's a really lucky guy to have you on his side.

Hope the melatonin helps

Wishin you both all the very best,

Kate

Back to top

IP Logged

JustNotRight

CH.com Sponsor

Offline

CH version 15.0.8 member
since 2005 aka GingerS224

Posts: 1300
Wilkes-Barre, Pa (USA)
Gender: female

Re: Im Brand New and a Newly Wed To a CH Sufferer!
Reply #3 - Nov 18^th, 2010 at 6:39am

Welcome Jareds Girl so glad you joined, there is nothing like a good supporter to a CH sufferer.

You may find the following links helpful to you.
Children as supporters:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Lances Cheat Sheet for Supporters
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Thank you for being such a good supporter!
Wishing you both many PF days and nights!

Back to top

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

An eye for eye only ends up making the whole world blind.
M.K. Gandhi

If you are going through hell...Just keep going

IP Logged

Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Im Brand New and a Newly Wed To a CH Sufferer! Reply #4 - Nov 18^th, 2010 at 7:44am Just so you're aware, melatonin can take a few days before it becomes effective. Not always.
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

Lauren17

CH.com Sponsor

Offline

Posts: 165
Texas
Gender: female

Re: Im Brand New and a Newly Wed To a CH Sufferer!
Reply #5 - Nov 18^th, 2010 at 8:52am

Welcome Jared's Girl! I'm a supporter too, my husband is going on 15 years or so with these. Please know that you are a huge asset to your husband. I find I have the energy, inclination, and drive to keep researching and pushing and trying new things when all my husband has the energy for is surviving through his hits sometimes. He will take a pill, try a treatment, or keep trying something for me when he wouldn't necessarily do it for himself.

For a long time he believed he "just has to suffer through these"- well, I'd be damned if I was just going to accept that! I got Lucas set up with a welding O2 set up (look in the yellow oxygen tab to the left for info on that) and 9mg a night of Melatonin- they both were AMAZING in their successfulness for him. We're all different, but hopefully they work as well your you guys. Also- energy drinks with taurine (red bull, monster, etc) they wern't a silver bullet for us, but they DID work sometimes if he drank them at the start of his shadows.

There is just so much out there to try, and retry, and try differently- these things change and change and change again unfortunately, but the good news from that is that is reason to NEVER give up hope. No really! Just because something didn't work in the past doesn't mean it won't work in the future, jut because something stopped working doesn't mean it won't ever work again. There is a whole world of options out there.

My husband is out of cycle now- I'm putting up our kit for his next episode- his regulator, Optimask, cheaper backup nonrebreathing mask, extra hoses, our notes and journal from this episode, and a quick sheet listing what worked this time so we don't forget the next go round. Which we no longer fear- we are SO prepared to fight on, we now have the weapons to do it really successfully.

Stay strong!

Back to top

« Last Edit: Nov 18^th, 2010 at 8:53am by Lauren17 »

Never, never, never give up.

IP Logged

Jareds Girl

CH.com Newbie

Offline

I Love CH.com!

Posts: 7

Re: Im Brand New and a Newly Wed To a CH Sufferer!
Reply #6 - Nov 18^th, 2010 at 6:21pm

thanks for all the support. We both took that melatonin and we both slept like babies! yay for something! Do any of you keep a journal of what you eat or drink?? I have heard that some peoples headaches were cured when they found out that gatorade was triggering theirs.. or food they ate? Think its just a coincidence or caffenine or alcohol really do trigger??

Back to top

IP Logged

Guiseppi

CH.com Moderator
CH.com Alumnus

Offline

San Diego to Florida 05-16-2011

Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male

Re: Im Brand New and a Newly Wed To a CH Sufferer!
Reply #7 - Nov 18^th, 2010 at 7:06pm

Triggers are funny things. For me, on cycle, alcohol, sleep deprivation or getting really hungry are triggers for attacks. If i avoid my triggers while on cycle, i get less attacks, it's definitely not a cure, but it means I get hit less. Off cycle they don't bother me at all. So it's good to identify your triggers, just to lessen the number of attacks.

But dumping gatorade probably won't cure ya! Wink

Joe

Back to top

"Somebody had to say it" is usually a piss poor excuse to be mean.

IP Logged

Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Im Brand New and a Newly Wed To a CH Sufferer! Reply #8 - Nov 19^th, 2010 at 1:49pm ...and caffeine actually helps a lot more clusterheads than it hurts (it's a vaso-constrictor).
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

Click Here to visit the CH.com Facebook page!

QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: Im Brand New and a Newly Wed To a CH Sufferer! Reply #9 - Nov 19^th, 2010 at 3:16pm Glad you're here JaredsGirl and from one supporter to another - when you're in need of support for yourself too we're here for you. Christy
Back to top	Treat people with kind words. IP Logged

his wife CH.com Old Timer Offline The sweetest sound is my children's laughter Posts: 271	Re: Im Brand New and a Newly Wed To a CH Sufferer! Reply #10 - Nov 19^th, 2010 at 9:21pm Hi Jared's Girl...I'm glad you found the site. I'm a supporter too. There's so much good information and many wonderful people here. We supporters have been where you are and know what you are going through too. Feel free to reach out anytime.
Back to top	IP Logged

thebbz Ex Member	Re: Im Brand New and a Newly Wed To a CH Sufferer! Reply #11 - Nov 20^th, 2010 at 2:23am Just the fact you are searching for information, ATTA GIRL. Supporters rock. the bb
Back to top	IP Logged

Linda_Howell

CH.com Moderator
CH.com Alumnus

Offline

Do not feed the Moderators

Posts: 11927
Santa Maria, Ca.
Gender: female

Re: Im Brand New and a Newly Wed To a CH Sufferer!
Reply #12 - Nov 20^th, 2010 at 8:43pm

Jareds girl,

Any newcomers, especially those who haven't been diagnosed properly DO, indeed need keep a journal as to how times per day they get hit, what they were doing at the time, how long the hit lasted etc. Here is a print-out some use. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

However you may be confusing Migraines and food triggers with CH. For the most part, only alcohol is a universal trigger for us. Migraines are a totally different condition.

Our supporters here which are almost exclusively women coming here for their husband..are treated like gold. Us sufferers would be lost w/o you and I applaud you for coming here looking for answers for Jared. If I could...I'd give you one great big hug. Smiley

Now go out and buy him a six-pack of Rock Star. I can't drink carbonated drinks fast, so what I do is open one in the morning, so that by the time I need it a LOT of the carbonation is gone and I can chug it fast. While you're at the store for the energy drinks, get one or two bags of frozen peas or corn to be put behind the neck or on the side affected. (cold is a vaso-constrictor) Tell him to sit in front of an A/C unit in the car or at home and breathe deeply. When he goes to a doctor be an advocate for him and insist that the Dr. prescribe oxygen. (read the 02 link to the left of here) Make certain he prescribes it with a regulator that goes to at least 15 to 25 lpm. and a non-rebreather mask.

You can rant here all you want. Nothing you can say that we all haven't heard before.

Linda

Back to top

Hurt people.....hurt people. Think about it.

IP Logged

Jareds Girl

CH.com Newbie

Offline

I Love CH.com!

Posts: 7

Re: Im Brand New and a Newly Wed To a CH Sufferer!
Reply #13 - Nov 21^st, 2010 at 9:18pm

cool.. we have him on o2 and we just bought a rebreather mask ( that he hasnt had to use yet).. But im not gonna get to excited about that cause he is drinking alchy tonight so we are gonna hope for the best. On the caffine note.. he had stopped drinking it cause the dr told him he shouldnt drink it... But ever since he taken back to drinking dr pepper.. His headaches havent been around as much. Coincidence?? who knows.. Thanks for showing me love.. Hope im not up tonight! We have had 3 whole nights of sleep and it has been awesome!

Back to top

IP Logged

Mike NZ

CH.com Hall of Famer

Offline

Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
Gender: male

Re: Im Brand New and a Newly Wed To a CH Sufferer!
Reply #14 - Nov 22^nd, 2010 at 12:09am

Jareds Girl wrote on Nov 21^st, 2010 at 9:18pm:

cool.. we have him on o2 and we just bought a rebreather mask ( that he hasnt had to use yet)..

Hopefully you meant a "non-rebreather mask"! And you'll find that once he gets used to killing CHs with oxygen he'll be over the moon with how effective it can be.

Jareds Girl wrote on Nov 21^st, 2010 at 9:18pm:

On the caffine note.. he had stopped drinking it cause the dr told him he shouldnt drink it... But ever since he taken back to drinking dr pepper.. His headaches havent been around as much. Coincidence?? who knows..

Caffeine acts as a vaso-constrictor, just like oxygen, which is why drinking a strong coffee or a Red Bull (or similar) can help when we get a CH.

So it could be coincidence or not.

Back to top

IP Logged

-johnny-

CH.com Sponsor

Offline

theres no smoking on the
dock

Posts: 1642
fayette county ohio
Gender: male

Re: Im Brand New and a Newly Wed To a CH Sufferer!
Reply #15 - Jan 3^rd, 2011 at 12:10am

Jareds Girl wrote on Nov 17^th, 2010 at 8:52pm:

he is on temp disability because he drives a truck for a living .. Not a real good thing to be driving and get a "hit".

driving a truck and getting a hit is by far the scariest thing i have encountered out there on the road. i could work outside for hours getting loaded and tarped and tied down in the cold and be fine. 20 minutes after i get behind the wheel i get hit. you can't always get a ramp to park on either. it is stressful and terrifying.

Back to top

« Last Edit: Jan 3^rd, 2011 at 12:11am by -johnny- »

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

IP Logged

Jareds Girl

CH.com Newbie

Offline

I Love CH.com!

Posts: 7

Re: Im Brand New and a Newly Wed To a CH Sufferer!
Reply #16 - Feb 9^th, 2011 at 9:37pm

Just an update because I have not been on in quite a while.. It has been several months and Jared has not had any problems. Thank you all for all your kind words and support. I think this site has made all the difference. If we didnt know about o2 and melatonin who knows how he would be right now. We go one day at a time and thank god for something like 3 months of pain free days!!!!!!!!!

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

Lauren17 CH.com Sponsor Offline Posts: 165 Texas Gender:	Re: Im Brand New and a Newly Wed To a CH Sufferer! Reply #17 - Feb 10^th, 2011 at 8:34am Now THAT is what we like to hear! So happy for you guys!
Back to top	Never, never, never give up. IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Im Brand New and a Newly Wed To a CH Sufferer! Reply #18 - Feb 10^th, 2011 at 8:52am Thanks again for being an awesome supporter and finding this site for him. Occasionally remind him how damned lucky he is to have you! Joe
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: Im Brand New and a Newly Wed To a CH Sufferer! Reply #19 - Feb 12^th, 2011 at 12:29pm Great to hear that Jared is in a remission. Thanks for the update, we like hear the good news!
Back to top	Treat people with kind words. IP Logged

Kate in Oz CH.com Hall of Famer Offline Posts: 633 Australia Gender:	Re: Im Brand New and a Newly Wed To a CH Sufferer! Reply #20 - Feb 13^th, 2011 at 6:09am It's really great to hear that you were able to find some things that worked for him during the cycle and that he's now pain free. Fantastic news!!! I hope that it lasts a long, long time! Thanks for letting us know
Back to top	IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!