Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Supporter's Corner >> Supporter's Corner >> I am new to this and we need help
        
(Message started by: Leila on Jun 16^th, 2003, 4:31pm)

Title: I am new to this and we need help
Post by Leila on Jun 16^th, 2003, 4:31pm

Hello there...you all have such a wonderful community going here, so supportive...I found a lot of comfort just in reading other people's posts and replies. I am in love with the greatest guy in the world, and something so terrible is happening to him...I think that he may, at 20 years old, be having his first onset of cluster headaches. He has had recurring headaches for the past 5 days, and last night I nearly called an ambulance. He couldn't sit still, he was pacing and thrashing, and his tears absolutely broke my heart--in two years of being so close to him, I have never seen him cry from physical pain. His pain was localized to his eye and temple, and it was only on one side. We are people that believe in alternative healing, so we held each other the best that we could with his urge to thrash, and we concentrated every bit of energy into relieving his pain. I know that he needs to see a neurosurgeon, from reading other sites and posts, and this is something that he strongly disagrees with. Last night was his first episode like this, and I have spent all day today doing research on the cause...everything leads me to cluster headaches. My post is this: I feel that he is suffering from his first bout of cluster headaches. Talking him into seeing a licensed physician about it will be another issue, and it is one that I will be adamant about. Until then (money is another issue for us and doctor visits), are there any alternative healing methods that we can use at home to alleviate some of this pain? What has worked for you all that didn't involve a doctor? I love this man, and my heart is still breaking from the memory of him hurting so much last night. I want to heal him, and I will not rest until it is at least manageable. Please help me...I promise that any help or good energy given to us will come back to you tenfold.

Bless you,
~Leila

Title: Re: I am new to this and we need help
Post by eyes_afire on Jun 16^th, 2003, 5:14pm

Hi Leila, welcome to this place. I'm sorry you had need to seek us out. Fortunately, cluster headaches are not deadly by themselves. But they are painful beyond belief, sometimes enuff to drive some people to entertain bad thoughts, and they can have serious consequences on everyday functioning. It is impossible to accurately describe what cluster headaches feel like... it's too horrible. Unfortunately there is no cure for cluster headaches, but there are some treatments that are life-savers. Some of the 'non-drug' strategies that I personally employ include:

1. Oxygen! - when done properly has aborted many full blown CH for me. Here's info:

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

2. Putting ice on my eye - sometimes helps.

3. A helluva lot of water - this sometimes helps me when the shadows of CH are creeping, I've never tried it during a full-blown CH because I'm usually putting my oxygen mask on. Check out the button on the left side of this website for more info.

I wish you well,

--- Steve, one of many...

Title: Re: I am new to this and we need help
Post by cathy on Jun 16^th, 2003, 5:45pm

Hi Leila...sorry your guy is having what sounds like clusters...some people here believe vigorous exercise can help...get a diagnosis first though.

PF vibes to you both.

cathy

Title: Re: I am new to this and we need help
Post by Margi on Jun 16^th, 2003, 7:29pm

Hi Leila and welcome.

Girl, I could have written that post 17 years ago when I saw Mike have his first cluster. It darned near sucked the life right outta me.

Aversion to medical doctors here as well, me probably more than Mike, and trust me - we've tried every trick in the book homeopathically, naturopathically, herbal, you name it and the only "natural" things we've had any luck with at all were the ones mentioned above by Steve: ice, oxygen and water. Don't waste your time/money on feverfew, mustard powder, etc. They are more for migraine sufferers. This is a different beast that doesn't respond well to much. :(

So...here's how we battle. Ice pack on the back of the neck at onset of attack, a couple of glasses of ice cold water right away, and Mike gets on the oxygen. We don't have a medical prescription for it so he uses welders' oxygen with a (now, this is REAL important) non-rebreather mask, and a regulator (that Jonny built for us and gave us). He's used it without the mask and regulator but the risk there is improper delivery, lung tissue tearing and incontrollable flow rate. In a pinch, however, it did get him through a few attacks. Welders' oxygen is relatively easy to obtain if he absolutely refuses to go to a doctor, but it is a recognized treatment for clusters now, so a knowledgeable doc WILL write this up for him if he doesn't want to try any of the meds.

At www.clusterheadaches.org, there is a list of recommended doctors by area - these are docs that we've all tried and can attest that they KNOW clusters. You need to see a neurologist - not a surgeon.

Mike has tried the med route and there ARE some helps out there (although we think it prolonged his cycle for him?) He's done the prednisone burst that gave him a few days of relief, but the pain comes back. Then Imitrex as an abortive, and verapamil/lithium as a preventative. Yes, they do help a little, but I completely understand his aversion to chemical meds.

Alternatively, there is the psilocybin mushroom treatment and, if he's med free as you say, he might be a good candidate for it. Type in 'shrooms' in your search button (or read some of the posts) to see if this is an avenue you want to pursue. We think it did give Mike (my hubby) relief for a little while.

And, finally, click the link at the bottom of my post - we're the Family Services Team and we're here to help you, the supporter, cope with clusters. There's an email link there to clusterbuds@hotmail.com if you'd rather talk off the board. Failing that, you can always reach me at moxie_miss@hotmail.com. I've walked 17 years in your shoes, honey - it's a bumpy road sometimes.

Big hugs,
Margi

p.s. you can also get him to try hot peppers as an abortive.

Title: Re: I am new to this and we need help
Post by Ree on Jun 16^th, 2003, 9:15pm

Leila ~~~you are a wonderful supporter...It is the hardest feeling in the world to watch someone you deeply love go through a Cluster headache... The anxiety, the turmoil etc... He does have to be seen by a neuro. And one that knows cluster headache...He needs a preventative med and an abortive... Know your stuff and print up any information you can find here... ... Do your homework and start calling neuros in your area... We have so much information for you on the left USE IT... and feel free to email me anytime... My husband Dave is a sufferer of about 20 yrs + and we know where you are coming from... good luck and love to you Be Strong we are here for you...Ree
ps Margi Dave also feels that he the meds prolong the cycle we have to get them together to talk sometime... He thinks that they have to start... peak and work their way down... something to ponder i guess...

Title: Re: I am new to this and we need help
Post by murazzio on Jul 5^th, 2003, 7:33pm

Hi Layla,

as the others have written, try to get him to a doctor that knows and acknowledges CH. Besides oxygen ice and water you might do some research on cranial massage, I have read from some sufferers that this helps to ease the pain. If you are well with energy-fields and concentration, concentrate on the breathing and bloodflow AWAY from the head. This is very difficult when having an attack, but you being a great supporter could help him to master this. If it works for you I think it can make it less painful.

Good luck!

Wish you and your sufferer all the best and PFDAN

Title: Long days journey into night
Post by rumplestiltskin on Jul 17^th, 2003, 11:40am

I applaud yer efforts. They have been rewarded by bringin you here. You need to read all of the information at this site and the OUCH site. There is a way to manage his pain at these sites. He will have to decide the route(s).

Be patient! I do not say that lightly. Both my wife and I have Clusterheadaches. The "miracles" here take time. Give each new technique/substance time to work. You are looking for long range solutions for what may be a life long syndrome.

Clusters are not spectator sports. There will come a time when you just can't "do" anything...but let it run it's course. After listening to my Georgia wail and thrash in pain in the bathroom and she rounds the corner looking beaten and desperate crying hysterically "make it stop?".............words fail.....but I'm on..........I do neck rubs, ice packs, force her to get on and stay on the O2....hold her up as I force her to run in place.....not much talking....make sure she knows how many meds she has already taken....inside the Cluster, 5 minutes seems like an hour. When she's convinced her veins are popping out or her eye is bleeding or her head has caved or swollen twice it's size....I reassure her that they aren't.

You must stay calm in the knowledge that it will pass and will do no permanent damage. You must transcend the moment....for his sake.

You will find a lot of "alternative" medicines and techniques. Many will come with iron clad guarantees to work. I don't discourage trying any of them like some folks here. That which works for him....works for him....one of the supreme curses of CH is that it doesn't respond the same way to the same things for all sufferers. Again...be patient.

There are doctors that know CH and can help. Few doctors are trained in CH. I just went to a Neurologist for an injury unrelated to CH and when I questioned him about Clusters he confidently claimed to be treating some CHers and mentioned a number of drugs he uses which many people here have reported to be useless against them....even harmful. I pity his patients.

Stay strong
Walk in the sunshine
den

Title: Re: I am new to this and we need help
Post by Margi on Jul 17^th, 2003, 11:49am

Den, that has got to be one of the BEST supporter posts i've ever seen. Wow - you got me with that one.

Clusters are not spectator sports. Indeed. :o

Good job, Dennis - you, sir, ROCK as a supporter.

Title: Re: I am new to this and we need help
Post by Leila on Jul 17^th, 2003, 1:05pm

Thanks so much, all of you...all of your support and energy is felt and appreciated by me and my beloved. We are in the process of getting some tests run on him, so we have seen the benefits of consulting a doctor. They are expensive, but Life has always taken care of us by always providing a way to get what we need. I received a substantial raise at work the same time his tests began, and his family unexpectedly began supporting him financially for college expenses that we were paying on our own. We reap the benefits of the energy that we give every single day in some way, and we have been very careful to give the best we can to each other and the rest of the world. All of your advice has helped us, and even though we haven't tried everything mentioned yet (water, exercise, and massage seems to work the best thus far) we have a long list of options in case the Beast changes its ways of battle, thanks to people that bless the Earth by giving great positive energy back to people in need. You are all special, and great, great things are in store for all of you. Thank you from the bottom of our hearts, and may your harvests be rich with the fruits that you deserve.

Bless You,

~Leila & Jim