What is the highest amount you've taken and for how long?

I'm pretty sure I'm beginning a new cycle and I'm debating on upping my dosage from 1.7g to 2.55g due to breakthroughs the night before last and last night.  The kip levels haven't gone beyond a 5, and I'm wondering if increasing the dosage once more will either bring the kip even lower, or will make them just become phantoms instead.

Here's my journal so far:


Quote:

Dec. 21, 2008- a.m. mild attack (began double dosage of Taurine from 850mg once before bedtime, to 1.7g once before bedtime) Dec. 27, 2008- middle of night attack (not sure what time), woke me from sleep, rode out until done. Jan. 6, 2009- 11:50(?)pm-12:20am, K5 Jan. 7, 2009- 1:31am-2:04am, K5

Another option would be to through Kudzu into the mix, I do have it onhand but am not sure if I should or not, as it'd be hard for me to take them at the exact same time everyday.  I also have already called in a RX for O2.

Any suggestions?  Thanks!

Ok, I remember Barry (Coles) doing the Taurine and have now found the thread from 2006 (here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE ) and from reading I need to add in a Magnesium supplement too.

I'll do some more reading and post later.  

Sorry, Mel, that I don't have any good advice to offer.  I am sorry that you are starting a cycle though.  Hugs to you!

Jeannie

Quote:

I also have already called in a RX for O2.

That's what I did. It's all about getting the prevent's to work then.
I  [smiley=heart.gif] 02
Do some demon beatin Mel.
all the best
the bb

Thanks Jeannie & bb!

Well, after doing some reading, I am increasing my dosage (my NSI Taurine pills are 850mg each, so now I'll be taking 3) of Taurine and adding in 500mg of Magnesium before bedtime.

I'm keeping my fingers crossed!

:'(

Sorry you're getting whacked again, Mel.   :'(

All good wishes,

George

[smiley=hug.gif] Damn - Mel - I'm sorry to hear you're getting hit.  Hang in there.


Hugs
Carol

It's OK you guys!  I had a great 3 yrs PF!!  I only gotta make it through 38 more days (if I'm lucky) and I'll be PF again!

:-*me

Melissa wrote on Jan 8^th, 2009 at 6:02pm:

Thanks Jeannie & bb! Well, after doing some reading, I am increasing my dosage (my NSI Taurine pills are 850mg each, so now I'll be taking 3) of Taurine and adding in 500mg of Magnesium before bedtime. I'm keeping my fingers crossed!

Hi Mel
Sorry to hear your dancing again.
Add a 500mg calcium supplement as well or get the magnesium/calcium combo, the reason being that magnesium is a calcium blocker & you will end up with muscle & joint pain that really sucks.

All the best
Cheers
Barry

Barry_T_Coles wrote on Jan 8^th, 2009 at 7:54pm:

Hi Mel Sorry to hear your dancing again. Add a 500mg calcium supplement as well or get the magnesium/calcium combo, the reason being that magnesium is a calcium blocker & you will end up with muscle & joint pain that really sucks. All the best Cheers Barry

Thanks Barry!  I do take a calcium/magnesium supplement currently, so I'll check to see how much more magnesium I need to add in order to make it 500mg.

Report this morning:

After adding in another 850mg of Taurine (to bring the total to 2.55g) and adding 500mg of Magnesium (in addition to the calcium/magnesium pill I already take that had 150mg included, now magnesium total is 650mg), I am happy to say I did NOT wake with a CH last night!

:)

Yay for Mel!!! [smiley=hug.gif]

Joe

Good on you Melly!!!!

Jeannie

Mel,

when I took taurine supplements, it was one 500mg tablet/day for 50 days. My stomach didn't like the trial, so I have not repeated it.

Lots of good luck with yours and keep us posted! :) I love hearing that it has given you PF night!!! :)

Sanna

Hi,
I'm very new to this game and learning very quickly.  First let me say thank you to everyone on this site for your insight and experience.  My stupid question is how does one find Taurine suppliments and can I take them along with the maintenance/abortive meds my neuro has me on?  I'm on Nortriptylin, Topamax, Imitrex, Reglan & Toradol  I was started on some of the standard meds which were very successful but had to be taken off cuz I have low blood pressure and those meds were taking the BP to the danger low point!!!
Thanks
:)

Hello Dyna, I'm sorry but I don't have the answer for you.  I'm sure someone will come along and have the answers to your questions though.



Update: Not good, but could be worse.  I ended up waking up twice last night with hits.  Both lasted about 35 min and were between a 5-6 kip.  I do believe that if I wasn't on anything, they would have been screamers, as that is usually how my cycles start out.  I am peeved no one called me back about the O2, so that's something I'm focusing on heavily today.

IF my hits get to the point I can't ride them out, then I'm definately adding in the Kudzu.  So far I can bear them (not that I want to). :(

I'll keep this thread updated.

mel

Dyna wrote on Jan 10^th, 2009 at 7:21am:

Hi, I'm very new to this game and learning very quickly.  First let me say thank you to everyone on this site for your insight and experience.  My stupid question is how does one find Taurine suppliments and can I take them along with the maintenance/abortive meds my neuro has me on?  I'm on Nortriptylin, Topamax, Imitrex, Reglan & Toradol  I was started on some of the standard meds which were very successful but had to be taken off cuz I have low blood pressure and those meds were taking the BP to the danger low point!!! Thanks :)

You definitely want to consult your Dr.  Taurine is a calcium channel blocker just like Verapamil.  If you couldn't tolerate Verapamil, you'll want your Dr's advice before trying Taurine.  

Be careful...

-Dennis-

I'm starting to feel like my grandmother with all the meds and supplements I'm starting to take. I went label reading down the energy drink aisle cuz I tried Loco Moco and it does stop hits for me. Rockstar Coffee & Energy and Monster Java Coffee Energy (various flavors) all contain 1000 mg of taurine. Not too good on the waistline, but there is a Monster Lo-Ball with half the calories that I've got cooling in the frig; I may not even wait for a CH to give it a try.

Mel, for what it's worth, each 8 oz can of red bull has approximately 1,000mg of taurine in it.  ...and how many cans of red bull do some people consume in a day?  :lol3:

Hope you find the right mix to beat the beast!

Laurie

Oh - found this at the mayo clinic.  Up to 3,000mg of Taurine a day is safe.  :)

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Laurie

Thanks Laurie.  I'm thinking of adding another 850mg again tonight.  I think I'll have to go to swallowing 2 sets of pills though, my throat cannot handle all that at once anymore!

Garys_Girl wrote on Jan 10^th, 2009 at 2:42pm:

Oh - found this at the mayo clinic.  Up to 3,000mg of Taurine a day is safe.  :) START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Laurie

I've read that at other sites, that 3g (not mg) is considered safe, but know of people here that go over that.  Obviously it's a risk, just like any other OTC or RX, so I am keeping an eye on my body's reactions.

~mel

Yeah, I wrote it in the mg, not g, but it's the same number.  But I agree - 3,400mg (3.4g) is probably not a problem, especially if you're not using it long term.  Which hopefully you won't be!

[smiley=hug.gif]

Laurie

Ok, took 3.4g of the Taurine last night.  Had NO attacks.  About 20min after I woke up this morning I was shadowing heavily, but began breathing exercises (the same way I breath when doing O2) and they subsided after about 5 min.

I'm anxious to see if tonight I get hit again. :-/

Got my fingers crossed for you!  Hope that's the magic number.  !!!

Laurie

Well, got hit again.  Only this time I woke with 3.  One about 1am, one about 3am and then about 15min ago, which went away quickly.  All about a K5-6 again.

It's strange, I usually don't get mulitples until I'm midcycle. :-/  It's almost like my cycle's been speeded up or something.  I have NEVER had a sporadic hit and not gotten hit subsequently, like I have at the beginning of this one.

I'm perplexed!

Melissa wrote on Jan 12^th, 2009 at 5:19am:

Well, got hit again.  Only this time I woke with 3.  One about 1am, one about 3am and then about 15min ago, which went away quickly.  All about a K5-6 again. It's strange, I usually don't get mulitples until I'm midcycle. :-/  It's almost like my cycle's been speeded up or something.  I have NEVER had a sporadic hit and not gotten hit subsequently, like I have at the beginning of this one. I'm perplexed!

Hon, is there any REASON why you're waiting until it gets too much to bare that you're waiting to start the kudzu?

I'm asking because I would go ahead and pull out the big guns, to keep you from getting to the point that you'd have to 'ride it out'.

Also, adding in new prevents for me, each time has made my cycle weird. It might be that your beast is confused. I mean literally, my cycle goes from being at specific times, to it changing to different times. It's weird.

Pixie- I don't want to add another vitamin that reduces BP on top of one that I'm already taking.  I have normal BP out of cycle, but it has gone on the low side sometimes.  Right now the Taurine is acting in the same way Kudzu did my cycle before (less severity, duration), so I want to give it a chance before adding in something else.  

If I end up getting hit every other night with CH's that don't go beyond a K6 because of the Taurine, I'll take it!!!  

As for riding them out, I have to until I get my O2, I have no choice, lol.

Melissa wrote on Jan 12^th, 2009 at 5:56am:

Pixie- I don't want to add another vitamin that reduces BP on top of one that I'm already taking.  I have normal BP out of cycle, but it has gone on the low side sometimes.  Right now the Taurine is acting in the same way Kudzu did my cycle before (less severity, duration), so I want to give it a chance before adding in something else.   If I end up getting hit every other night with CH's that don't go beyond a K6 because of the Taurine, I'll take it!!!   As for riding them out, I have to until I get my O2, I have no choice, lol.

Ahh, okay, I didn't know if it was for a medical reason, or if it was just because you were waiting to pull out the big guns for when he really got pissy. :D

After doing some more reading, it seems that instead of upping the Taurine any more, I should try increasing my Magnesium intake instead.

I'm going to bump it up from 500mg to 750mg and see how that goes.  

Mel, I hope it works! :)

PF days & hugs,
Sanna

Thanks Sanna, and the same for you my friend!


Well, looks like I'll be able to pick up my O2 tanks either tomorrow or Thursday.  My GP wants to see me though for a check-up( ::)) next week as it's been 1.5yrs since I've seen him.  Figures I'd have to pay just to get my tanks!  Cripes.  Someday I'm going to just break down and buy my old welding O2 tank. :P

Oh, and the regulator I bought should be here tomorrow. :)

Well, I did something that I think is dumb now, and reduced my Taurine by one pill (850mg) to see if a lower dose would work.

Wrong.

I woke last night with a K8-9 that lasted for an hour.  Not fun!  I have never forgotten that feeling and will do what it takes not to again from here on out. :(

Damnit Mel you're due for a break. [smiley=hug.gif]

Joe

Joe, you're sweet, but I hope so many others get that break before me because they've been fighting a lot longer than I this cycle. :-*

This morning: due to exhaustion from the night before, took a nap from 10:30am-Noon and woke up with about a K4 CH attack.  Decided to start Kudzu regimen so took 1.2g Kudzu root and drink a cup of caffeinated coffee (in cycle is the ONLY time I drink anything with caffeine).  CH lasted only 20 minutes!

Since I am a glutton for punishment, I am yet adjusting my meds.  Thank goodness my body responds quickly and is sensitive enough to what I injest that I can tell what is or won't work.  I'm going to take my Kudzu now (1.5g 3x a day), and reduce the Taurine by one more pill to 1.7g.  I am going to also keep taking 650mg of magnesium.

I figure my cycle is so short (40 days) that it would be wasting my time on getting more relief with just the Taurine, so I think it best I go with what I know DOES work for now.  

HUGS to all!

:)mel

Mel... [smiley=hug.gif]

PF days to us all,
Sanna

Dyna wrote on Jan 10^th, 2009 at 7:21am:

Hi, I'm very new to this game and learning very quickly.  First let me say thank you to everyone on this site for your insight and experience.  My stupid question is how does one find Taurine suppliments and can I take them along with the maintenance/abortive meds my neuro has me on?  I'm on Nortriptylin, Topamax, Imitrex, Reglan & Toradol  I was started on some of the standard meds which were very successful but had to be taken off cuz I have low blood pressure and those meds were taking the BP to the danger low point!!! Thanks :)

Just wanted to comment on something you wrote:
I could be wrong, but thought I read that nortriptyline only works for migraines, not CH's. Also, it will lower your blood pressure.

Ok, I am back up to 3 (850mg each) Taurine tabs every night before bed and 2 Kudzu, 3x a day, plus 650mg of Magnesium as my preventatives.  So far my frequency has gone down and I had a 15 min. hit last night (no abortives) and one that lasted 40 min.

The only side effect I am experiencing tho, is vertigo.  Could be because my BP is low, so I'm going to have to ease up on the Taurine & Magnesium.  I'm going to take one less pill of each tonight and see how that goes. :-/  That would put me at 1.7g of Taurine and 400mg of magnesium.

I also now have my rig set up for O2 to knock them out tonight!  

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Ok, the whole BP thing has me spooked, so I've decided to completely cut out the Taurine. :(  

Also, now that I have my O2, I'm not as scared of waking up with more hits (which of course I hope doesn't happen).

I do love Taurine though as it helps with my anxiety out of cycle and I think is a great precurser to letting other meds/alternatives kick in.

JMO

Glad you've got the 02 in the arsenal now. !!  Friggin' bummer about the vertigo since that level of taurine really seemed to be helping.  Once again, got my fingers crossed.

Laurie

Thanks Laurie


Well, I just got back from my neighbors to get my blood pressure taken.  Imagine my surprise when it was HIGH!  132/90.  Only other time I had high BP like that was when my neuro took it during my 2003 cycle. :-/

Good grief, I don't know what to do anymore!  lol

Mel, invest in a blood pressure cuff!  They're not totally accurate, but they give you a real good idea of where things stand.  Take it twice a day at the same time every day.  (Or, of course, when you feel you need to).  :)

Laurie

I'm an idiot.

I looked back to see when my vertigo began and what I had done to change my regimen.  It coincided with when I started the Kudzu!  Up until that point I was calm and no vertigo.  Figures!

I should have trusted my instincts and stuck with just the Taurine.  So now I have to go off the Kudzu and back on the Taurine again.  It just didn't make any sense to me WHY something that has anti anxiety properties, that I've been taking for 4+ months now has all of a sudden caused my BP to rise and vertigo??

Ohforpetesake

I'm updating this morning, but then won't do it again until a few days have passed.

Last night SUCKED.  5 attacks, 4 that needed O2, slowest abort time was 22 min.

I have now forgone all Kudzu and will take 3.4g of Taurine before bedtime this evening.

I am SO wanting to put this craziness behind me and get on some kind of routine.

TTFN

I'm so sorry Mel!  I hear lots of talk about Melatonin at bedtime.  Have you tried that?  Sorry if I missed it in a previous post.  

Sure hope the beast lets up soon, sweetie!

Jeannie

Edit to add:  Is this the first cycle you have had since having Ava?  Things seemed to change for me after Morgan was born.  Just a thought.

Melissa wrote on Jan 16^th, 2009 at 2:45am:

I'm an idiot. I looked back to see when my vertigo began and what I had done to change my regimen.  It coincided with when I started the Kudzu!  Up until that point I was calm and no vertigo.  Figures! I should have trusted my instincts and stuck with just the Taurine.  So now I have to go off the Kudzu and back on the Taurine again.  It just didn't make any sense to me WHY something that has anti anxiety properties, that I've been taking for 4+ months now has all of a sudden caused my BP to rise and vertigo?? Ohforpetesake

Vertigo has been described as a side effect of kudzu by some here - it is usually temporary, until a person adjusts.  

The blood pressure might be a separate issue.  When I am in cycle, my blood pressure is wacked - high, low and normal, all in one day.  If your BP is always 130/90, you should do something. One reading of such mild elevation is no reason for alarm.  

Both taurine and kudzu have been used for lowering blood pressure, and for lowering anxiety.  I doubt that both are equally good for all people, and like you said, changing the routine itself can be disruptive.  

Thanks Monty.  

My BP is usually 117/60.  It's always been normal except when I'm in cycle.

Jeannie- Melatonin I have tried before and I cannot take it.  It makes things worse for me.

So far I am doing good today.  The vertigo is decreasing.  I am sticking to my original plan as far as the Taurine tonight.

I'll post again in the a.m. the results of tonight.

Thanks all,
~mel


ETA: I had my neighbor take my BP again.  First we did my right arm, and it was measuring high again at 142/90, and then we did my left arm, which measured 134/82.  Go figure. :-/

Good morning, uh, to whoever reads this thread, lol.

I am sorta happy to report that I only got woke up twice last night with attacks!  The 1st one I aborted with O2 in about 10 min., and the 2nd one I foolishly didn't think would go full blown, which it did, so I ended up riding it out (NOT FUN, thought I had a stroke by the end of it!).  HUGE opinion on hitting that O2 as soon as you get your first twinge, DO IT!

Anyway, I can conclude thus far that the Taurine is definately working as a preventative for me.  I'll report back again tomorrow.

Oh, and the vertigo is almost gone now from the Kudzu.  I know it's a temporary side effect, but I have an anxiety disorder which makes it extremely unlikable.

Melissa wrote on Jan 17^th, 2009 at 8:00am:

Good morning, uh, to whoever reads this thread, lol. I am sorta happy to report that I only got woke up twice last night with attacks!  The 1st one I aborted with O2 in about 10 min., and the 2nd one I foolishly didn't think would go full blown, which it did, so I ended up riding it out (NOT FUN, thought I had a stroke by the end of it!).  HUGE opinion on hitting that O2 as soon as you get your first twinge, DO IT! Anyway, I can conclude thus far that the Taurine is definately working as a preventative for me.  I'll report back again tomorrow. Oh, and the vertigo is almost gone now from the Kudzu.  I know it's a temporary side effect, but I have an anxiety disorder which makes it extremely unlikable.

Sounds like your getting somwhere.
I'm real happy for you & hope there's more PF time to come soon.
Kindest Regards
Barry

Thanks Barry.

UPdate- Last night was very rough and confusing.  When someone tells you that the beast can behave quite differently each cycle, they're arn't kidding.  Here's what happened last night:

10:29pm-10:34pm, killed with O2
12:09am-12:20am, killed with O2
1:43am-2:03am, killed with O2, but now am getting exhausted and frustrated, so I decided that I wasn't going to use the O2 next time and got out my heating pad and fell back to sleep with it on my cluster side after making myself a mug of caffinated coffee.
3:30am-3:48am- turned the heating pad on at 3:30am and rode it till it was gone, was at a low enough Kip that I could stay laying on the pad.
5:05am-whenever I fell back to sleep with the heating pad again.

I had tried cold packs the nights before and they didn't help worth a squat, thus the heat.  My beast has morphed into something I am not familiar with, so Lord knows how tonights going to be. :-/

I wish there were personal journals on here so I don't have to keep bumping up this thread, lol.

Anyway, I have been doing much thinking, and I believe I need to give up on the Taurine.  I was so sure that it'd work as a great prevent, but believe it may be working against me. :(  Never in all the years I have had CH's have I EVER gotten hit as many times as I am now.   The only difference this time in my regimen is the Taurine supplements.

I swear I won't update this until a couple days have passed going Taurine free.  Please ignore this post as it's more for my documentation than to inform others of what I'm doing.  I feel like with all the med changes I am coming off as a hyperactive lunatic, but I gotta try things quickly to find the one thing that will help for the rest of the cycle.  I do plan on adding the Kudzu back in, and pray it doesn't take longer than a week to kick in.

Keeping my fingers crossed.

Updating this thread/journal...

Jan. 18, 2009- took an afternoon nap, took about 2 hours to even fall asleep.  Then I woke with a CH and it lasted from 5:20pm-5:40pm.  No O2.  Then last nights events as follows: Began Kudzu regimen again (not taking Taurine anymore, I think it makes things worse) taking 2.4g at 8pm, then fell asleep at 10:30pm.  Woke with attacks 12:09am-12:17am (used O2, K2-3), 2:02am-2:24am (used O2, K8-9), then I took 2 Excedrin Migraine, said a prayer and went back to sleep.  Woke at 6am Jan. 19, 2009 this morning by my alarm.

Jan. 19, 2009- Went off all “treatments” (I.E. No Kudzu or Taurine)  Did take Excedrin Migraine throughout the day and some Alka Seltzer before bed.  Ended up with a rebound headache from hell. 8:28pm-8:39pm (O2), 9:43pm-10:36pm K10, O2 not working, was HORRIBLE, 1:19am-1:39am K7 (O2)

Jan. 20, 2009- no CH’s but developed a migraine instead.  Began around 5pm and lasted till 8am next morning (21st) when I took some Excedrin Migraine.  Only difference was taking Melatonin (9mg) at 8pm, 30min before bedtime.

Jan. 21, 2009- Took 9mg Melatonin before 10pm bedtime.  Woke 12:26am-12:48am (O2), 2:34am-2:48am (O2), 4:18am-4:35am (O2), 6am-6:30am (no O2)

Jan. 22, 209- 10:38pm-10:44pm (O2), 12:28am-1:00am (ran out of O2 during hit, rode out the rest, that SUCKED!!!), 3:46am-3:53am (O2), 5:28am-5:35am (O2), 7:30am-7:36am (O2).

Jan. 23, 2009- took ½ a Relpax before bedtime.  Fell asleep around 8:15/8:30pm.  Woke with a CH at 9:18-9:33pm used O2.  Then slept and dreamed I woke up every hour with a CH until I really DID wake up with a CH at 12:23-12:30am (O2).  Then took the other ½ of the Relpax.  Woke up at 4am with no CH, fell back to sleep and woke again with a CH from 5:03am-5:11am (O2).  Not sure how I feel this morning.  My head is still swimming and I want to go back to bed so bad, but I won't.

Jan. 24, 2009- took 1 full Relpax pill before bedtime (9:30pm), woke 2:36am-2:50am (K8 O2), 4:10am-4:32am (K8 O2), 6am-6:09am (K5 O2)

Jan. 25, 2009- 1 Relpax before 9:30pm bedtime, woke 1:43am-1:51am, 3:22am-3:34am, 4:32am-4:39am, 5:46am-5:56am, used O2 for all.

Jan. 26, 2009- I will be taking 1 Relpax before bed plus Diphenhydramine HCI (Simply Sleep) to try and prevent dreaming (REM sleep).