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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> miracle!
        
(Message started by: mcgirsh on Mar 15^th, 2007, 10:05pm)

Title: miracle!
Post by mcgirsh on Mar 15^th, 2007, 10:05pm

My husband has been having chronic clusters for 5 years now and when the medication he was on stopped being effective (verapamil, imitrex, oxygen) we were at a loss for what to do.
What happened next might be the answer to his cure!
He had a blood test done and found out that he had "iron overload". after doing research on THAT topic
I found a correlation to the iron/cluster thing. We decided that he would go donate blood to get some of the excess iron out of his system. Keep in mind that the blood donation was during a 4 week cluster.
As of that very day he has yet to have another headache!! We are going to make sure that he continues to give blood every 56 days. He's donating blood to potentially save someone else's life and at the same time is able to have his life back again! good deal!
If this helps just one person it was worth it!

Title: Re: miracle!
Post by UN solved on Mar 15^th, 2007, 10:11pm

on 03/15/07 at 22:05:26, mcgirsh wrote:

He had a blood test done and found out that he had "iron overload". after doing research on THAT topic
I found a correlation to the iron/cluster thing.

Could you show me that please.

Thanks

Unsolved

Title: Re: miracle!
Post by thebbz on Mar 15^th, 2007, 10:17pm

I hope your right. I think it's a coincidence. I cant give blood, it would kill the normal man. ;;D
Whats the correlation? Hope the pf time continues

Quote:

Keep in mind that the blood donation was during a 4 week cluster.

Chronic or episodic? Which is it.
jb

Title: Re: miracle!
Post by mcgirsh on Mar 15^th, 2007, 10:22pm

he has chronic clusters and the iron thing he has is called hemochromatosis.

Title: Re: miracle!
Post by Brewcrew on Mar 15^th, 2007, 10:23pm

Welcome. Sorry you have to be here but glad you found us.

Just one word of warning: The thousands of sufferers here are extremely cautious of the word "cure." There is no credible neurologist that will say there is a cure to CH syndrome.

Title: Re: miracle!
Post by Rosybabe on Mar 15^th, 2007, 10:24pm

I am sorry, but I think it was a coincidance..
I donated blood just after Christmas and my cycle started jan 5th...
I donate 2 or 3 times per year and I get sure I do not donate while in cycle because my blood will not be good for the use of others with so much medication on it, you are not allow to have in your system for at least 3 full days any strong medication..we all know our medications are very strong because our pain is very strong...
sorry again but I do not think that will help our condition, maybe just our hearts because we are doing something good for others, just please do not do it while on treatment.

Title: Re: miracle!
Post by mcgirsh on Mar 15^th, 2007, 10:25pm

I agree with you. he called his doctor a few days after the blood donation and he wouldn't even believe him that they went away in an instant. He wants to make money ya know

Title: Re: miracle!
Post by mcgirsh on Mar 15^th, 2007, 10:28pm

listen..giving blood isn't the answer for 99% of you, especially if you don't have high iron stores..however, for the few that may know they have this, it could be their answer.

Title: Re: miracle!
Post by alienspacebabe on Mar 15^th, 2007, 10:31pm

whether it's a coincidence or not, it's wonderful news that he's found a way for him to be PF!

thanks for sharing the idea with us. it has few side effects, does a whole lotta good for others, and only hurts for a bit.

Title: Re: miracle!
Post by thebbz on Mar 15^th, 2007, 10:37pm

Ya and if it helps one other person hey you did good. ;)
I am still skeptical,,,doesn't mean anything else.
all the best
and I mean that
jb

Title: Re: miracle!
Post by Rosybabe on Mar 15^th, 2007, 10:40pm

I found this, I think it is what you said you found as corelation.. but it still says it does not prove anything

High Iron Stores
Cluster headaches were also reported in two cousins with hereditary hemochromatosis, a disease characterized by the buildup of iron. Lowering iron levels in one of the cousins brought headache relief. Although this study does not prove that high iron levels cause cluster headaches, iron deposits in the brainstem may affect pain centers.

the actual page is:
http://www.morehead.org/wellconnected/000099_4.htm

Title: Re: miracle!
Post by Brewcrew on Mar 15^th, 2007, 10:42pm

Everyone here is thrilled whenever a fellow clusterhead finds relief. All I'm saying is that one needs to be EXTREMELY careful when throwing the "C" word out on the table.

Title: Re: miracle!
Post by Rosybabe on Mar 15^th, 2007, 10:44pm

That is right Brew!!

Wishing your husband many many PFDN for him!!!!

Title: Re: miracle!
Post by Kevin_M on Mar 15^th, 2007, 11:03pm

on 03/15/07 at 22:22:30, mcgirsh wrote:

the iron thing he has is called hemochromatosis.

another quick hemochomotosis, cluster headaches, google.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=16178952&dopt=Abstract

the two cousins

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12100096&dopt=Abstract

Title: Re: miracle!
Post by LeLimey on Mar 16^th, 2007, 5:12am

This isn't the first time we've heard of "blood letting" as an option for treatment people - our very own Jas has said she does it many times as she has "sticky blood" and that it helps her.

Its not like noni juice or any of that buy me crap, its not advertising a chiropractor and posting his contact details.

This lady has posted about something that has helped her hubby immeasurably and she can't gain anything from except helping others. The only "mistake" she has made is using our anti-buzz word of "cure".

McGirsh thank you for your posts, whilst I'm delighted for both of you please remember this beast mutates so check in and let us know how you're doing and also keep an eye on any new treatments or self help techniques we find, I hope you never need them but I'd sooner you were "armed" than caught unawares!

Helen

Title: Re: miracle!
Post by Chillrmn1 on Mar 16^th, 2007, 5:37am

mcgirsh,

Glad your husband is now painfree. Never read this before and find it interesting. I'll definately donate a pint a blood next time in cycle to see if I notice any results, plus it will help someone else needing blood.

Yea like others said, folks around here are pretty sensitive when the word "cure" is used in conjunction with "CH". Hope others don't try to beat you up over this.

Thanks for sharing info on what you think helped your husband get relief.

Take care.

Title: Re: miracle!
Post by mcgirsh on Mar 16^th, 2007, 6:39am

since i'm not really familiar with this site I didn't know "cure" was a bad word...sorry! My husband is so elated with all of this that he keeps saying, "honey you cured me!!" I'm just happy that we have our life back..at least for now...I will definitly write back and keep you all posted on whether or not he gets another CH. cross your fingers for us. we have a new baby and the nights are hard enough as it is and to not have the added stress of the nightly CH episode really helps!!

Title: Re: miracle!
Post by UN solved on Mar 16^th, 2007, 1:27pm

My clusters started a very long time ago after giving blood twice in a row (maybe too close together). [smiley=huh.gif]

I've had a gazillion blood tests too which the docs never mentioned the iron thing.

UNsolved

Goodluck and hope the PF time continues :)

Title: Re: miracle!
Post by StressFree on Mar 23^rd, 2007, 12:26pm

I'm glad to hear your husband is cluster free. I'd keep giving blood too! The articles linked in message above are very interesting. I've always felt that cluster headaches are caused by a combination of issues that some of us special people are cursed with. Hypothalamus, stress hormones, sleep issues, allergy etc. Now perhaps they see that iron plays a role in pain regulation. I'm always amazed at how many of us sufferers refuse to be open to possibilities that don't fit the common line, "it's the hypothalamus stupid". Look at the success with woodrose seads and mushroom treatments. Many will condemn that, but it is clearly effective for many of us. Hang in there. I hope you have found a cure! I'm not afraid to say it either "CURE"!
Saying prayers for you all, Rich

Title: Re: miracle!
Post by Sandy_C on Mar 23^rd, 2007, 1:31pm

Maybe not a miracle, or a cure, but from the links provided above, I found it very interesting.

Even if there is a very small percentage of CH sufferers who also have this "overabundance" of iron, and donating a pint of blood helps to relieve the CH, why not?

Obviously, not all of us would benefit, but if even one person found relief - I'd call that pretty good.

Hmmm. Think I'll go get my blood checked for iron levels.

But, remember, like Helen said, you have to detox from your heavy meds before you can donate.

Good luck. Keep us informed on how your husband does with this. I looks promising for some CH sufferers.

Sandy