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  ;)

We welcome our supporters with open arms!! [smiley=hug.gif] My wife found this board for me many years ago and saved my sanity. Bless your heart for jumping on in! :)

Joe

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

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:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Lances Cheat Sheet for Supporters
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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

Just so you're aware, melatonin can take a few days before it becomes effective. Not always.

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!

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??

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! ;)

Joe

...and caffeine actually helps a lot more clusterheads than it hurts (it's a vaso-constrictor).

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

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.

Just the fact you are searching for information, ATTA GIRL.
Supporters rock.
the bb

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.   START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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=hug.gif]

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

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!

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.

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.

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!!!!!!!!!

Now THAT is what we like to hear! So happy for you guys!

Thanks again for being an awesome supporter and finding this site for him. Occasionally remind him how damned lucky he is to have you! [smiley=hug.gif]

Joe

Great to hear that Jared is in a remission. Thanks for the update, we like hear the good news!

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  :)