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Cluster Headache Help and Support >> Cluster Headache Specific >> Finally a little bit better day....there's hope!
(Message started by: MinxKittten on Apr 26th, 2008, 1:40am)

Title: Finally a little bit better day....there's hope!
Post by MinxKittten on Apr 26th, 2008, 1:40am
Well after a particularly bad cylce for my hubby rick,  maybe we're finally turning the corner.

Since starting the topomax a few weeks ago he was still at 3-5 HA a day.  but the pain level was much better than the k10 splitters he was getting before that.

yesterday and today even better...only one minor today so far!!  We added a MAJOR  taurine supplement today after i read that it helps with digestion.  its a form of bile that helps break down foods and absorb them into the small intestine.  

as you may know from my Food Triggers post,  the act of EATING has been bringing on major HA for rick.

today he ate and took the taurine right after and only a very MINOR HA an hour after instead of the normal splitter after eating.

its probably a combination of things:

-still on 240 verapimil (no he doesn't want to increase)
-2 topamax per day now too
-trying to drink ALOT more water,  no more crystal lite (nutra sweet)
-added ISOPURE pure protein drinks, no fat no sugar, 40g of pure protein when he gets tired and hungry
-cut tomatoes and processed meats and vinagar based dressings out of his diet
-found ranch dressing with no msg
-added magnesium suplements back (which he's tried before, w/o much success.
-added the TAURINE today 1000 mg after eating, then this evening after eating toast he started shadowing and took another taurine and felt better.

-he's not really into the O2.

oh and on top of all that,  we had a very nice day.
went to the beach, went skating, took spike (our chihuahua) to dog beach, had a nice lunch,  played bacgammon on our patio next to the koi pond, and watched a movie.

ahhhh.....please send us good vibes that we may keep up this good progress at keeping the beast at bay.  we need your positive energy. ::)

Title: Re: Finally a little bit better day....there's hop
Post by AussieBrian on Apr 26th, 2008, 2:08am
Hope, darlin'.  There's always hope.  We thrive on it here and do dances after every Cmate beats the beast again.  

It's posts like yours that give us all hope, so keep 'em coming.

We need this as much as you do, and I thank you.


Title: Re: Finally a little bit better day....there's hop
Post by kevmd on Apr 26th, 2008, 11:19pm
very happy the two of you had a good day.  Its amazing how people take those things for granted.  We treasure them.   I am a stubborn guy myself and I may be crossing the line asking these questions.  Why will he not up his verapamil?  Does he experience some sort of side effects?  Why is he not into o2?  What does he use as an abortive?  I'll tell you this is my first cyle using o2 and I do not know why i didnt use it before.  It is a life saver.  yes, its a pain in the ass and it is a commitment but 100% worth it.    

Quality of life goes through the roof with o2.  With imitrex, you have to decide which headache you are going to treat and which you have to ride out. Not with o2, just use it everytime you think its coming.  There's my 2 cents.  I won't judge any further

Title: Re: Finally a little bit better day....there's hop
Post by MinxKittten on Apr 27th, 2008, 12:00am

on 04/26/08 at 23:19:46, kevmd wrote:
very happy the two of you had a good day. Its amazing how people take those things for granted. We treasure them. I am a stubborn guy myself and I may be crossing the line asking these questions. Why will he not up his verapamil? Does he experience some sort of side effects? Why is he not into o2? What does he use as an abortive? I'll tell you this is my first cyle using o2 and I do not know why i didnt use it before. It is a life saver. yes, its a pain in the ass and it is a commitment but 100% worth it.

Quality of life goes through the roof with o2. With imitrex, you have to decide which headache you are going to treat and which you have to ride out. Not with o2, just use it everytime you think its coming. There's my 2 cents. I won't judge any further


he's always been a "tough guy"  and for years just rode it out.  only used imitrix when absolutely necessary,  like in a public setting or on the job and getting hit.

as for the verapimil,  he doesn't like feeling "medicated" and he said he tried a higher dose before and not much difference in HA.  i was lucky he didn't give up the topamax after the first few days that made him feel a bit dopey.  but its better now.

as for the O2, its a combination of things.  its a bit of a mental block for him,  as his dad was dependent on o2 in his older, ailing years.  he recognizes that.

in addition,  he doesn't like the taste it leaves in his mouth and he says it makes him woozy.

again, its his decision, not mine,  i got the info,  i got the o2 delivered,  i got all the equipment,  up to hiim to use it or not.  i won't judge,  its his pain.

no worries on the questions,  that's how we learn what might work for each sufferer.



Title: Re: Finally a little bit better day....there's hop
Post by MinxKittten on Apr 27th, 2008, 12:07am
this morning, the first thing my hubby said to me when he awoke...
"wow,  that was the first pain free day i've had in months"

AWESOME!!!

we don't want to get toooo excited, in case its a fluke.

nevertheless it was nice to have a PF day and nite.  like the kind Richard always wishes us.  (thanks richard!!!  keep wisin em!!)

today,  no hits so far.....kept with yesterday's regimine.

and......   he got to eat dinner for the first time in months!!!

lets see how the night goes...... ::)

Title: Re: Finally a little bit better day....there's hop
Post by Jackie on Apr 27th, 2008, 6:23am
So good to hear....... :) :) :) :).......for both of you!

Much love,
Jackie

Title: Re: Finally a little bit better day....there's hop
Post by DennisM1045 on Apr 27th, 2008, 12:53pm
Awesome news!!!  Love to hear it...

I hope his break is a good long one.

-Dennis-

Title: Re: Finally a little bit better day....there's hop
Post by RichardN on Apr 27th, 2008, 1:31pm
Ditto the above jacq

 PF . . .  any way you can get there . . . are our two favorite letters in the alphabet.

 Hope the beast continues to lay back and his cycle ends soon.

 Be Safe,    PFDANs

    Richard

Title: Re: Finally a little bit better day....there's hop
Post by Guiseppi on Apr 27th, 2008, 1:55pm
That is such great news! :)  Cannot thank you enough for your love and support....we'd have a tougher time around here without our supporters, you guys..err...gals...rock! [smiley=thumbsup.gif]

Guiseppi

Title: Re: Finally a little bit better day....there's hop
Post by MinxKittten on Apr 27th, 2008, 2:11pm
well  he did have a couple of minor hits last nite after our big dinner. :'(

but nothing major,  i just think he over did it after months of no dinner.  the fact that he had a big meal in the evening and didn't have a BIG HA, is indeed improvement still.

seems like taking the taurine with meals helps immensely with the digestion and not bringing on that meal related HA.

we got our Tall Grass Beef order yesterday and i'm looking forward to seeing if there is any difference for him with beef, including hot dogs with no hormones, no nitrates, no additives of any kind.  pure grass fed, instead of grain fed beef.   my friend said the taste is amazing,  we'll see soon enough. ::)

Title: Re: Finally a little bit better day....there's hop
Post by Jonny on Apr 27th, 2008, 2:13pm
[smiley=headbanger.gif]



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