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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> new from wv
        
(Message started by: cj on Mar 20^th, 2005, 11:56am)

Title: new from wv
Post by cj on Mar 20^th, 2005, 11:56am

Just found this site. Wow I figured we were the only person out there the way our doctors talked. My husband has suffered from ch for over 25 years we have had lots of different types of treatments. we started in cleveland 25 years ago with a Dr. Kunkle, President, at that time, of the natl headache foundation. He had several ganglion injections, blocks, and gamma knife. After all that, he stated that there was nothing else to do. Sent us home to our pcp. We then searched for something, anything new. We found a dr in Pittsburg. Dr Janetta. He informed us that he had a procedure called the decompression of the 5th cranial nerve. (scary and not successful either) It was preformed with the idea that it worked for a few people and we wanted to be one of them. We now know that it doesnt work. We have tryed multi neuro people, He has done the DHE 45/ all the regular med for ch. He's now just on pain meds because no one wants to deal with him. So here I am looking for help/support anything worth hearing would be helpful. would like to meet with other people in our area. we are in north central wv. Please if you have any ideas I would love to hear from you. I sooooo glad to have found you!! :-/

Title: Re: new from wv
Post by zrmulcahy on Mar 20^th, 2005, 1:24pm

Sounds like a job for ClusterBusters.
www.clusterbusters.com

Title: Re: new from wv
Post by firebrix on Mar 20^th, 2005, 3:52pm

Sometimes it's pretty quiet here in the weekends cj, but you've come to the right place for answers to your questions. Soon the gurus will be along to discuss your post but in the meantime, has your husband tried using Oxygen for his ha/s? If you look to the left of the home-page screen, you'll see a button about O2. Have a read there.......... this helps a lot of people.

There is so much useful info on this site and lots of it is on those same buttons. Please browse through it while you wait and do also check out the supporters' board. Use the search function for specific questions about meds etc.

Welcome to you and your husband, cj!
Glad you found this site too!
firebrix

Title: Re: new from wv
Post by cj on Mar 20^th, 2005, 4:21pm

He tried O2 many years ago. With not much success. I guess it's time to retry. Its so trying to figure this whole process out. I know the doctors are busy but most of the time we look for solutions on our own. Thanks for the information we will contine to check out the other links on this page. :)

Title: Re: new from wv
Post by firebrix on Mar 20^th, 2005, 6:23pm

It's imperative to use a non-rebreather mask with the O2 and to use up to 15 litres per minute. Mopar's method is to stay on the O2 for around ten minutes after the ha. has gone to ensure it doesn't return half an hour later. It doesn't ALWAYS work, but if he uses O2 at the very first inkling of a ha, his results will be better - i.e. Don't let the ha. build up before hitting the O2.

The O2 page has links to suppliers too.

Good luck.
firebrix

Title: Re: new from wv
Post by Kris_in_SJ on Mar 20^th, 2005, 8:00pm

Hi CJ,

Sound like your husband is a lucky man to have someone supporting him as you do. We clusterheads wouldn't know what to do without those who support and help us. I'm sorry your hubby is suffering so much right now.

It's a little hard to know how to help without knowing what your husband has tried in the way of med treatment, or whether he is chronic or episodic.

First, I'd definitely check out the thread on Kudzu (under Medications and Treatments). It's long, but well worth reading through, as the blind tests being done seem really hopeful.

If your email is listed, check it tomorrow. I'll send a couple of articles that have been of great help to me. If it isn't listed and you'd like the articles, PM me with your address and I'll send them.

And, as mentioned above, clusterbusters.com is sometimes a real lifesaver for those who don't respond to other types of meds.

Many Hugs,

Kris

Title: Re: new from wv
Post by BobG on Mar 20^th, 2005, 8:18pm

Quote:

We have tryed multi neuro people, He has done the DHE 45/ all the regular med for ch. He's now just on pain meds because no one wants to deal with him. So here I am looking for help/support anything worth hearing would be helpful. would like to meet with other people in our area. we are in north central wv.

What do you mean by all the regular meds for ch? Verapamil? Imitrex? Oxygen? Normally just pain medication will not work on clusters. There are better avenues of attack.

On the left side of your screen is a ‘where we live’ button. Under it there are 27 clusterheads in WV.

And,
Go to the Medications, Treatments, Therapies section of this site and scroll to the heading ‘no longer chronic’. It’s a great string on alternative treatment.
or go to www.clusterbusters.com

Also you can scroll to the heading ‘5-HT activity in Kudzu’ for a discussion on another treatment.

Best to you and thanks for sticking by your man.

Title: Re: new from wv
Post by cj on Mar 20^th, 2005, 9:07pm

We have had all the antidepressants, antiinflammatories, steroids, calcium blockers, sansert, verapamil, high high doses of depakote, dhe, imitrex usage, indocin until he could hardly move. Iidocaine patches on the forehead. He's also tried Botox too! They use to put him under to try to break them. We used to go to the ER. They knew us quite well but he refuses to go anymore. I know that pain meds dont work well but he thinks it they only way, seeing that all other methods don't seem to work anymore. He's been through detox and then put right back on them. He still works but its hard. His employer have been good to him for years. Many understand, but some do not. Its hard!! We have never heard of Kudzu. I will check into that. It's an herb? I checked out clusterbusters.com, interesting but..........I'm not to sure about that. He's a good guy in bad situation. Loves his family, wants to work, but this dang gone things are driving him crazy.
thanks again for listening. Just doesnt seem right. Maybe someday they will disappear just like they way they appeared so many years ago. I hope and pray for that!!

Title: Re: new from wv
Post by BobG on Mar 20^th, 2005, 9:43pm

on 03/20/05 at 21:07:27, cj wrote:

We have never heard of Kudzu. I will check into that. It's an herb? Yes. You can find it at health food/vitamin storesI checked out clusterbusters.com, interesting but..........I'm not to sure about that. That is understandable. Using the clusterbuster treatment is a personal thing.
thanks again for listening. You're welcome. The people here understand. We've all been where you are now.Just doesnt seem right. It ain't and it just sucks big time.Maybe someday they will disappear just like they way they appeared so many years ago.It's not unheard of. I haven't had a cycle in about 4-5 years. Could be I've outgrown them. I hope and pray for that!! We do too.

Title: Re: new from wv
Post by cj on Mar 20^th, 2005, 9:48pm

Thanks Bob G. I will 1st thing tomorrow check in on the Kudzu and B complex stuff. I have another question-
when these people are talking about shadows is it like a ch just hanging around in the back ground?

and do you know of anyone that went for the trial in new England? I'm going to call there tomorrow too.

Have a good, and hopefully, pain feel evening.

Title: Re: new from wv
Post by BobG on Mar 20^th, 2005, 10:33pm

on 03/20/05 at 21:48:56, cj wrote:

when these people are talking about shadows is it like a ch just hanging around in the back ground? Yep. For me it's a sensation in the eye and sometimes down to the jaw that the cluster devil is still lurking around. It's down low on the kip scale, maybe a 1 or 2. Usually it'll hang around for that same amount of time that a full blown attack lasts, 30 minutes to an hour. Even though I have'nt had a true cluster cycle for a few years I still get shadow cycles, or shadow clusters, or clusters of shadows, for lack of better words. The shadow cycles last about the same as the cluster cycles used to, 6-8 weeks.
and do you know of anyone that went for the trial in new England? Nope. Can't help you with that question..

Title: Re: new from wv
Post by cj on Mar 21^st, 2005, 8:29pm

Went today and picked up the Kudzu at a natural food store. What should this really look like? I've seen the capsules on web sites. They sold it only in bulk and it looks like white chunks of chalk. This man told me that this is the purest form of Kudzu. I really have no idea if this is true or not. He took his first dose already this evening. In a glass of warm water. I read that you should take 750 mg a day. We can only take dose of 1tsp that should equal 1000mg a day. He took it all at once. I also got B and C complex dietary supplement. Hope this all sounds right. We have never purchased this before. Just how quick does this work if it does? hours, days? [smiley=huh.gif]

Title: Re: new from wv
Post by BobG on Mar 21^st, 2005, 8:39pm

Like I said above, go to the Medications, Treatments, Therapies section of this site and scroll to the heading ‘5-HT activity in Kudzu’ to ask your question. I have not used Kudzu and can’t answer but in the 19 pages of that string there must be an answer.

Title: Re: new from wv
Post by jokrs2 on Mar 21^st, 2005, 11:52pm

Hi cj. Sorry about your husbands condition and I know that it is definitely not easy on you as well. I have a great supporter just like you. I am one of thos people who ended up on just opiate pain killers because nothing else seemed to work. I am now taking Planetary Formulas Kudzu Recovery. I have purchased it online from both iherb.com and vitacost.com. I take 2 750mg pills 3x daily. First thing in the morning, again at between 2 and 3 pm, and then again at about 9pm. It has been a miracle for me "personally". I have been off all other meds like Imitrex etc. since the 3rd of March and went completely of Morphine on the 8th of March. I have been on the Kudzu since the 4th of March. I started off below the recommended dose with mixed results, but when I went to the full recommended dosage I went into somewhat of a remission. I used to get hit hard 5 to 6 times a day with shadows and migraine in between. It became a blur to the point where I could hardly tell when I didn't have severe pain.
The Kudzu is shutting down the cluster hits, but I have some other injuries that cause migraines, but now I can tell the difference between the 2. I still feel the shadows all the time but they are typically not developing past a kip 3 on the pain scale and I do also supplement with a good vitamin with b-complex and melatonin 6mg to help with falling to sleep.
I pray your husband & you are successful in your search for relief from this nasty condition. These are just my results and I am reporting and recording my results in the CHATS site daily. Be blessed, Joe in Washington State

Title: Re: new from wv
Post by sandie99 on Mar 22^nd, 2005, 2:59pm

CJ,
warm welcome on board! :)

Best wishes & PFdays,
Sandie

Title: Re: new from wv
Post by cj on Mar 22^nd, 2005, 7:19pm

all of you have been just great. I cant begin to tell you how much this site has means to us. All the information is great. We are keeping a record of Kudzu as well. We are still using the powder/chalky form. I spoke with an herbist (sp) today. She told me to just increase the amount to 1 tablespoon 3 times a day. So far ?? His mood seems to be better. Or maybe I just very, very hopeful.

Thanks

cj