Clusterheadaches.com Message Board


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

        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Summary of Taurine & Magnesium trial
        
(Message started by: Barry_T_Coles on Jun 3^rd, 2007, 2:18am)

Title: Summary of Taurine & Magnesium trial
Post by Barry_T_Coles on Jun 3^rd, 2007, 2:18am

This post is rather long so I will have to load it in sections.
For the benefit of those who are new to this site I should explain how I came to be here.

I had my first encounter with this condition back in late 1999 where I got belted out of the blue with these horrible head pains and got myself an appointment with my GP who check me out thoroughly and found nothing sinister physically & suggested that I may have contracted a virus that was rampant at the time that was giving people terrible headaches, so it was a course of antibiotics, pain killers, $ 6,000.00 worth of dental work and three teeth less I still had to suffer out the 10 to 12 weeks of agony and then it just went away.
Five years later just about to the day the same thing happened & I thought here I go again I’ve got that damn virus back so its back to the GP a couple of times before she saw me going through a hit and she recognised the symptoms, referred me to a Nuro and the rest as they say is history, unfortunately this time around it didn’t go away & I have been chronic since.
I also developed Restless Limb & Exploding Head Syndrome, all conditions being related to a stuffed hypothalamus.
As you can see I haven’t suffered from this condition for the length of time nor had the experience that some here have but I wasn’t prepared to just stand back and get my ass (head) kicked forever.

Title: Re: Summary of Taurine & Magnesium trial
Post by Barry_T_Coles on Jun 3^rd, 2007, 2:20am

Cont:
How did I come to be here at this site; my GP pointed me in this direction & I am so glad she did.
So to the Taurine trial; when people started reporting that Red Bull and the Taurine/caffeine it contained helped kill low level hits & others suggested that Taurine in tablet form with strong coffee may do the same; this got my attention so I researched through the web all I could about Taurine & I came across a couple of coincidental similarities with what I had read here at CH.com, one was that women in pregnancy had an increased level of taurine in their system and with further searching I found that Taurine is essential in the brain development of the unborn child & I related this to some reports by our ladies here that some of them didn’t get CH hits while pregnant & wondered if it could be because of the increased level of Taurine.
The other coincidental connection was an article I came across where Taurine was being used with some rather good results with patients suffering alzimhers and as most would agree the beast gives our memory a severe kicking so with these thoughts and having convinced myself that I wouldn’t grow a second head or develop cauliflowers in my ears or hurt my heath in any way I considered that maybe by taking Taurine supplements I may be able to rid myself of this beast so I got hold of some 500mg tabs & took them at the recommended dosage of three a day at meal times.

Title: Re: Summary of Taurine & Magnesium trial
Post by Barry_T_Coles on Jun 3^rd, 2007, 2:21am

Cont:
The first week was as normal as usual with CH hits along with the RLS & EH, but by the end of that week I was getting my memory back & it kept improving in the following weeks. (I could actually remember what I went into a room for when I got there)
The next few weeks weren’t any different than the past with the hits but I noticed that the intensity and the duration of the hits wasn’t as great as before and appeared to be decreasing over time & I was at least getting some of my life back & this was more apparent when I added Magnesium to the regime about 2 weeks after I started with the Taurine.
I continued with the trial if only for the chance of proving or disproving its worth because of the results I had gained so far.
After a while I was starting to get some breaks between bad hits and as I have said before I don’t have a lot of experience with this condition so I had and still haven’t any guide as to where I should be so this is all hypothetical and I say this so as not to give anyone false hopes of utopia.
If you follow the links to my BLOG where I keep my headache diary you will see that I wasn’t getting much of a break between hits with the best early in the trial being 8 days & it wasn’t until nearly 2 months into the trial that I got a break of 14 days but the intensity of the hits was getting less on the KIP scale.

Title: Re: Summary of Taurine & Magnesium trial
Post by Barry_T_Coles on Jun 3^rd, 2007, 2:22am

Cont:
http://au.blog.360.yahoo.com/blog-oT2JJXMzerQyQBygCRv3YiMCJuzW?bid=25&yy=2006&mm=6

http://au.blog.360.yahoo.com/blog-oT2JJXMzerQyQBygCRv3YiMCJuzW?bid=32&yy=2006&mm=9

I should note that I was reading the KIP scale wrong where I was understating the value by 3; so where I have said in my blog that I had a 5 it was actually 8, I wasn’t counting shadows in the scale.

After 4 months into the trial I had a break of 39 days without getting hit, this was the longest break since going chronic & the attacks of RLS & EHS were decreasing & had almost ceased which was a great relief, for those who don’t get EHS they are like getting a KIP 10 for half a second or if you imagine Mohammad Ali standing next to your bed and laying a round house punch into the side of your head about every five minutes a couple of dozen times that leaves you very bruised & exhausted in the morning; then on October 2, 2006 completely out of the blue I got whacked with a KIP 8 that lasted 3 minutes, that incident was the last big hit I have had & I have been relatively clear with only shadows no greater than KIP 2-3 & currently enjoying a break of 244 days as of today June 3 2007.

What I would appreciate from our long time chronics is some feed back from your experience as to what I would or should have been experiencing; is what’s happening considered normal without treatment & therefore am I kidding myself or am I just having a lucky long break.

Cheers
Barry

Title: Re: Summary of Taurine & Magnesium trial
Post by Yorky on Jun 3^rd, 2007, 5:56am

cheers for the info barry.

long may you be pf.

(think i might try this route next time round)

Title: Re: Summary of Taurine & Magnesium trial
Post by klusterkopf on Jun 3^rd, 2007, 7:42am

Congratulations Barry! I have read and been told by my doctors that sometimes cluster headaches diminish or disappear as the sufferer gets older-that has not happened with me, but whether your self treatment or getting older is responsible for all of your pain free time, congratulations and may your relief be permanent.

Title: Re: Summary of Taurine & Magnesium trial
Post by E-Double on Jun 3^rd, 2007, 8:28am

Awesome!!!!!!!!!!

The only thing that I can provide is this:

Once I detoxed after a few yrs on meds I started getting breaks or I should say really low intensity hits for a couple of weeks then back to what seems to be peek cycle.

It is much easier to deal with for me and now I rarely have an attack that will exceed 30 minutes unaborted where I was going for hours.

I think many chronics have high and low minicycles or cycles within cycle as we call it.

I am just super glad that you found relief.

Title: Re: Summary of Taurine & Magnesium trial
Post by Phil L on Jun 4^th, 2007, 9:24pm

Fascinating Barry. Thanks for the briefing. Take care,
Phil

Title: Re: Summary of Taurine & Magnesium trial
Post by andrewjb on Jun 4^th, 2007, 11:13pm

:), great news barry, thanks. i can not help with the feed back, iam episodic. andrew.

Title: Re: Summary of Taurine & Magnesium trial
Post by Wayne on Jun 5^th, 2007, 1:46am

Hi Barry

Fascinating stuff, I looked at your blog and what truly impressed me is that you achieved this and still managed to have a few pints a night, Awesome!! Well I figure it certainly can't do any harm to replicate this trial and see if I get the same results.
Were you on any other meds when you started this or only using O2 as an abortive?

Title: Re: Summary of Taurine & Magnesium trial
Post by sandie99 on Jun 5^th, 2007, 3:51am

Barry, congratulations! It's just fantastic that you're PF! Wonderful! :)

Since my taurine trial I've noticed that I get a lot more shadowing and the hits have been milder. I did get my worst ever hit in this April, but I believe that taurine has helped me.

Sanna

Title: Re: Summary of Taurine & Magnesium trial
Post by kayarr on Jun 5^th, 2007, 8:14am

How exciting for you! May it last forever. I am going to show this to my guy and see what he thinks. Thank you for the information.

Kimberly

Title: Re: Summary of Taurine & Magnesium trial
Post by Barry_T_Coles on Jun 6^th, 2007, 7:08pm

on 06/05/07 at 01:46:32, Wayne wrote:

Hi Barry

still managed to have a few pints a night,
Were you on any other meds when you started this or only using O2 as an abortive?

Hi Wayne
I am able to drink stout wine & scotch but if I have a beer it will set off some heavy shadowing as does chocolate & some commercially manufactured foods like sausage rolls.
I’m guessing it’s not the alcohol; it’s the contents, preservatives maybe?

I don’t take any medication at all, o2, red bull & cold packs are my arsenal when needed.

Cheers
Barry

Title: Re: Summary of Taurine & Magnesium trial
Post by Wayne on Jun 7^th, 2007, 3:01pm

Hi Barry

I've found that I can handle RedBull and Vodka but I think the Caffiene is fighting the alcohol, whatever it works for me, I'm still way to scared to try anything else in case it hurts.

Well I've started on the Taurine/Magnesium regime, I reckon I'll give it a week or two and then start weaning off the Verapamil - Slowly - and see how it goes.

Thanks for the advice and you may well be right about the preservatives, theres so much rubbish in beer these days.

Cheers,

Wayne

Title: Re: Summary of Taurine & Magnesium trial
Post by Barry_T_Coles on Jun 11^th, 2007, 3:37am

on 06/05/07 at 03:51:59, sandie99 wrote:

Since my taurine trial I've noticed that I get a lot more shadowing and the hits have been milder.
Sanna

Interesting that you experienced the same, I shadow more now but havn't had a big hit.
Sorry for not posting sooner but i've been bush for the last 3 weeks.

Cheers
Barry

Title: Re: Summary of Taurine & Magnesium trial
Post by LeLimey on Jun 11^th, 2007, 4:12am

Barry I noticed you mention sausage rolls and some processed meats can be full of sulphites which do cause a problem for some people. It might be worth your while watching sulphites in what you eat and drink and seeing if avoiding them helps.

I'm glad you're doing so well, nothing cheers us all up as much as good news like this!