Jump to content
ClusterBusters
Sign in to follow this  
maxx4life

Thankful

Recommended Posts

I'm so glad I found this site!  My heart is so heavy from watching my husband suffer, he's in a cycle as I type this.  There is a ton of helpful information and it's just nice to know you all are out there. (that being said, sorry for your pain  :-[) I want to thank all of you for sharing your stories and experiences. I finally feel like there is hope and I don't feel so helpless.

Share this post


Link to post
Share on other sites

So glad you found us, but I'm sorry your husband is in cycle right now! *hugs*

You're not helpless, this can help him a lot. We're all happy to be here. I hope he gets relief soon!

Mystina

Share this post


Link to post
Share on other sites

Hi Maxx,

Welcome. If you would please let us know some specifics about your husband's headaches - how long he's had them, when he gets them, what medicines he's taken, what kinds of doctors he's seen, does he use oxygen, anything else you can think of - it would help us help you to care for him. Thank you.

Ron

Share this post


Link to post
Share on other sites

He is 28 years old and has had these headaches since he was 13.  There were a few years where he had no pain, but as you say, the beast is back.  Over the past couple of years, he has had approx two cycles a year, each lasting at least a month.  I haven't read enough to know if it will only get worse.  I'm ashamed to say that I've only recently begun to research this.  When he was younger he had all kinds of tests ran that showed nothing.  Doctors have given him migraine medications and pretty much treated him like some kind of junkie.  He has never tried oxygen and I'm not sure I can get him to.  He is a doctor-phobe and doesn't think they'll believe him.  He sits and suffers until it's over.  Breaks my heart.  But I'm so excited about all this information, I don't know what to try first!

Share this post


Link to post
Share on other sites

Hey Maxx!

In a cycle is a bad place place to be, that's for sure, but yes there definitely is hope!

You won't be the first spouse or other supporter who has helped a CH'er tremendously by searching this place out.

Hipshot and CHfather's daughter for example (there are many others) have been pretty ecstatic about their results after their thoroughly heroic supporters found this site - glad you landed here!  :)

Share this post


Link to post
Share on other sites

O2 is a good thing to try first.

Who could blame him for being a doctor-phobe considering their common ineptitude when it comes to treating CH?

In a pinch many CH'ers will bypass the doc and get their O2 from a welding supply place without prescription.

Please tell your hub that there are a lot of serious, long time, hardcore CH'ers and supporters here - his brothers and sisters from the CH tribe for cryin' out loud - who are in no mood anymore for screwing around with toxic treatments that don't work, but many of us have found tremendous relief outside the medical establishment. Here's one for zee hubby straight from the Jeebs: "Now that you've come across this info there's no reason anymore to just sit and suffer 'til it's over"

Another thing you could do immediately is order RC (Rivea Corymbosa seeds) from one of the vendors like iamshaman.com. Heck you could have them overnighted and hub could be dosing with them this Wednesday night (if he doesn't have to detox from any drugs).

If the RC doesn't work, don't despair, mushrooms likely will if you can get or grow any quick enough.

And I'm sure you'll continue to keep a close eye on any advice from the super helpful crew here, CHfather (Jerry), Bonkers (Ron), Pixie Elf (Mystina), and so many other illustrious members that I shouldn't have even started trying to list them .  8-)

Share this post


Link to post
Share on other sites

I will just add... get O2 now, any way you can. It is amazing stuff for most of us. Pain gone in minutes... no side effects!

Share this post


Link to post
Share on other sites

Yes, Maxx, I sat with my daughter (who's older than your husband) through night after agonizing night when she was using nothing to treat her headaches, because doctors had led her down so many blind alleys that she had given up hope.  Like so many others here, I completely understand how truly heavy it makes the heart to experience that--and to fear that it will be something that will worsen over time (which, to be honest, it probably will, which is why he has to act now or very soon) and that will have to be endured time after time.

But you can change everything by doing things that have been recommended by the good folks here (and, as another source of hope, it seems very possible that it might only be a couple more years before a true long-term "cure" for CH is available).

With my daughter, we finally got her a solid oxygen setup (which is what you should do first, or at least very quickly, if you can) and it drained away her terrible multi-hour attacks in under 15 minutes--like magic.  Here's more information about oxygen:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

She also started chugging down an energy drink at the first sign of an attack, and that helped her quite a bit, especially when followed directly by using the oxygen.  RedBull, Monster, or another brand with high caffeine and taurine content are what you want. 

Busting will stop a cycle and lessen the severity of attacks during a cycle.  As Matt (Bejeeber) said, you ought to order RC seeds right now.  They're legal to purchase and have in your home, so you're spending a pretty small amount of money for a lawful "insurance policy" if he decides to bust  (not legal to prepare and drink).  You can get rivea corymbosa seeds from a lot of places on the internet.  Two that are commonly used here are www.iamshaman.com and www.psychoactiveherbs.com.  You'd probably want to order 100 seeds.  More information about the (very simple) method of preparing seeds, and a lot of related info, can be found at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

If you can get him to try a healthy regimen of vitamins and other supplements that has helped a lot of people, often quite quickly, please consider the simple steps described in this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

If you can get him to a doctor -- if only to get a prescription for oxygen -- that would be good.  You can find a list by state of doctors who have been recommended by people with CH here: http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%208-16-2011.pdf.  If there are any near you, you might call and ask whether they will prescribe oxygen for someone with cluster headaches, and of course if so -- and if he can be persuaded to go -- whether you can get an appointment quickly because he's in cycle now.  Otherwise, welding oxygen will work just as well.

Finally, I just wanted to give you a link to this chart, prepared by a doctor from a major medical school, about the effectiveness of seeds in dealing with CH.  This chart is what led me to pursue busting with my daughter; maybe it will be valuable for your husband to see it.  It's about another kind of seed, HBWR, but these seeds contain the same active ingredient (LSA) as RC seeds, and many here prefer RC seeds because they're much easier to work with. http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf

It's not uncommon for people with CH, who have been so misused by the medical system, to give up and think they have to just try to figure out how to endure the pain.  Maybe they can do that this cycle or the next cycle, but the cycle after that and the one after that are going to hit them harder, and they get older and become less resilient, and no matter how "tough" they are, it just can't be endured, and then the dread of the next cycle also starts to take over their lives.  There's no reason at all for your husband (or you) to live like that when simple, effective treatments are available to him.  If one doesn't work (though it probably will), another will.  He has to keep trying, starting now.  Thank you for making sure he does.

Share this post


Link to post
Share on other sites

Welcome Maxx!

We are so glad to welcome you here, and your hubby, with open arms.

I am the supporter for my (almost) 20 year old son who has been chronic since the age of 12. 

He is now in college, full time, and living away from home, thanks to this treatment. 

Please share all this encouraging information with him.  He must know that there IS a light at the end of the tunnel.  Just one more time he has to trust in those who know his suffering, and he won't be sorry.

Share this post


Link to post
Share on other sites

Thank you so much for all the helpful information.  We now have a starting point and we'll keep trying until something works.  I've been sharing what I have learned on this site with my husband.  The change in his mentality is pretty incredible.  He's talking more openly about his condition.  He doesn't feel so alone anymore and is willing to let me help him.  We've been together for 11 years, been through a lot, and I'll be damned if this 'beast' gets the better of us.  You gave us the fuel to keep fighting. 

Share this post


Link to post
Share on other sites

:) :) :) :) :) :) :) :)  Wonderful news.

Keep us informed, please.  People here can walk you through almost anything you decide to do so it goes as smoothly and effectively as possible, which might be important for keeping hubby in the game.

Share this post


Link to post
Share on other sites

Hi Maxx,

Welcome! 

In case your hubby does decide to go through his physician to get an oxygen prescription (which I hope he will, even if he does find welders tank for immediate relief) here's a few more examples of valuable published documents to take with him.

JAMA Study on efficacy of o2

http://jama.ama-assn.org/content/302/22/2451.full.pdf+html

Confirmation of the study as written in Neurology Today

http://journals.lww.com/neurotodayonline/Fulltext/2010/01210/Major_Study_Confirms_Efficacy_of_Oxygen_Therapy.13.aspx

Survey of sufferers using o2 to abort attacks

http://www.ouchuk.org/html/news/Oxygen%20and%20Cluster%20Headache.pdf

It's the craziest thing but it seems we (sufferers & supporters) battle's are phenomenally enormous and on many different fronts.  All while dealing with suicidal pain!!!  It continually blows my mind. 

Take care, you're a godsend to us!

Cindy 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×