:'( Look's like my PF time has come to an end. I was hoping they were rogue hits and the o2 was taking care of them but they started coming more often and more intense. The past few nights reminded me all to well why I am here.

I held off on the Verapamil as we are just starting our fall biking season and was hoping they were fluke hits but last night the beast made it clear he is back. So I am on my Verapamil as of this morning and my o2 is full and ready to do battle.PFDAN wishes to each and everyone of you, may he leave you be.

  Barry

:( I'm joining you again. It's been 19 months for me and it felt like a world record and then the devil came a knockin again. A slight tinge of aura and foreshadowing yesterday as I completed some tasks and then came midnight, I awoke to the devil. He came in the door like he owned the place, made himself comfortable in the right side of my brain and decided to stay.
After a mad scramble for an old imitrex scrip, I settled into the Living room so not to wake up the wife and kids with daddy's moaning and groaning. It all comes back the pacing, the head banging and that feeling of being Charleton Heston in beneath the planet of the apes..."GET OUT OF MY HEAD!" Hoping this is a short cycle and wishing you all PFD's to come.

Barry im really sorry your cycle is starting again, Here's hoping it's the fastest cycle ever!!

Hang in there im rooting for ya

Ike

Sorry don i missed your post there, You hang in there too, It will pass Good Luck and feel free to rant here when ever you need to we know what your going thru

Thanks Ike ;)

Don, sorry the beast is back, but hang in there, and do not be a stranger or fight this on your own. We are all here for you.

  Barry :)

Sorry you guys are in pain again lets hope it is a short cycle with long remission afterwards

Regards
Brian

Barry,

I'm so sorry that the remission is over - for now. I hope that you will soon be PF again.

Don,

I'm sorry that you're in pain as well. I hope that you'll be soon in remission.

PF days to us all,
Sanna

:'(

Wish you guys short and successful battle and PF days,

Steve

Barry I got nothing to say to you...you already know everything! ;)

Don.......hoping you have more then just the imitrex to fight these things with. Do you have a good preventative medication like verapamil, lithium etc? Do you have oxygen for the headaches when they start? Imitrex is good but with my lithium and oxygen I RARELY have to get poked anymore. Give us a run down of what you use and let's see if we can give you some more tools for the battle.

Wishing both of you short cycles and record long remissions!

Guiseppi

Well, that's rotten.  Barry, hoping this one is short, mild, and soon over...you're a pro, and I know that whatever comes, you'll handle it with grace.

Don--all good wishes to you.  If there's anything at all we can help with, please let us know.

Best,

George

Barry and Don

I empathise! I was two years clear and it came back with no warning.

Mad scramble to stock up on 02, mend masks, order triptans (I am afraid I used out of date tabs and jabs but they still worked Thank God!)

No bloody clue why I started again though vague theory that our terrible summer and low light levels made my hypo think it was Autumn but will never know

Hang in there- it will go away again

Love

W the B

Don & Barry Sorry to hear that the beast has reared it's ugly head once again, hoping that this bout is short lived, best wishes for pain free days & nights... Drew

Thanks sucks guys!  hang in there and hoping he leaves early for you!

Kelly

Wishing you all some PF vibes, a short cycle and a LONG remission ahead...

Hugs BD

Thanks for the support you guys.

Don, how are you making out? Check in and keep us up to speed. Do you have o2?

  Barry

Stay diligent guys, hoping preventive measures are soon to kick in.  



Quote:

He came in the door like he owned the place, made himself comfortable...

Doesn't bother to knock but don't let him be a bell ringer, keep what you need handy, we're nearby.

I am sorry to hear that Barry.  But you know the drill around here.  Stock up for the fight to come.

   If you need anything from me, PM me o.k.?  I'm betting on a short cycle for you.

Linda

Sorry he's found you again Barry.  I sure hope it's a short one.

Now go kick his ass!

-Dennis-

Hey Barry, sorry to hear.  You've offered me some help and I'd like to do the same, although I don't know how.  The offer is there though.   I've been PF for a couple of months now.  I tend to really not think about them when they are not in cycle, that's the reason I haven't been on the board lately.  I don't mean to use you folks, but man, I just love to enjoy life when it's not happening.  I don't know how many folks between you and I have this, but I'd sure love to talk to someone in person that deals with the same thing someday.

Cheers, and hope this cycle doesn't last long for ya.

D'Arcy

Don, I just read my own post, didn't mean to be rude to you.  We haven't met but I wish a short and mild cycle for you as well!

Cheers,

D'Arcy

Sending short cycle/long remission vibes your way!

Jeannie

You know the drill Barry. Give'em hell.
Demon killer vibes to you and yours
thebb

Me too - it's been 3 years.  Weather here in NY turned and this year it tripped the light fantastic :(

I got my teletubby towel on deck and ice packs in fridge.  Purchasing ChockFullaNuts by the truckload.  Gonna stay med free as long as i can hold out.  

Best to you and hope it's a short walk this time*** :(

Sorry Don!  I missed your post too.  I'm sending a mega dose of beast kicking vibes your way too.

-Dennis-

You guy's are the best! Thanks. You help more than you know just by being there.

I had a small problem when I went back on the Verapamil. I started back on Verap last Saturday morning at my 480mg daily dose but my BP dropped too low and had to call my neuro on Tuesday as I was almost passing out. He told me to get to the ER and get checked out. All is ok but had a good scare as I have never felt like that before.

Saw my neuro yesterday and he reduced my verap dose to 320mg daily for a few days then I am to go back up to the 480mg. Had to let my body get adjusted to the dosage.

Also, we talked about when I am away from my o2 (mainly when I am out in the forest biking) what I can do if I get hit way out there. Being on Verap means no Red Bull. We decided to go with the Imitrex injections, so I will have one of those with me while biking.

See, I am still learning! ;)

Thanks again! :)

Hey Barry!  I had similar problems when initially ramping up on verapamil last year.  I had to step up 120mg at a time every three or four days to do it safely.  Once I felt stable at the new level I'd go up again.

Did you consider the D sized tanks for biking?  I'm just curious...

Good luck...

-Dennis-

Barry and Don, I hope  you both kick the sh$t out of this beast and don't let him get the best of you.  Just think of PF days on the horizon.
Positive thoughts are key  :)

Wishing you both the best!

Barry I am fairly new to posting but not to the beast. I saw in the thread you said since you are on verapamil no red bull.  Is that because the red bull negates the affect of verap vice versa or because of dangers.  Dumb do do here am on 480mg of verapamil and drink red bull to kill light shadows.  BP is fine, I don't check it every day.  I have not noticed any problems, but I have not discussed with my neuro either. Wishing you PF days soon and hoping that you don't get hit and need the trex while in the woods. Thanks Wishbone

Ernie Moss aka Wishbone wrote on Sep 4^th, 2008 at 6:32pm:

Barry I am fairly new to posting but not to the beast. I saw in the thread you said since you are on verapamil no red bull.  Is that because the red bull negates the affect of verap vice versa or because of dangers.  Dumb do do here am on 480mg of verapamil and drink red bull to kill light shadows.  BP is fine, I don't check it every day.  I have not noticed any problems, but I have not discussed with my neuro either. Wishing you PF days soon and hoping that you don't get hit and need the trex while in the woods. Thanks Wishbone

Wishbone, nice to meet you. I am not sure what happens when you mix the two as I am still learning also. I will get someone who can maybe answer this for us.

DennisM1045 wrote on Sep 4^th, 2008 at 12:20pm:

Did you consider the D sized tanks for biking?  I'm just curious... Good luck... -Dennis-

Yes I did Dennis, but not gonna work out there. Good suggestion though, I appreciate.

Packing Imitrex Injection! That is my ace in the hole while out of reach of my o2. Hope I do not need it!

Thxs Bro!

barry_sword wrote on Sep 4^th, 2008 at 6:59am:

I started back on Verap last Saturday morning at my 480mg daily dose but...

I fluctuate dosage using verap throughout the year, but wanted to repeat what Dennis said.  Very gradually with the increments and gradual steps when decreasing its use.  
 Starting a cycle is an eager time to want protection soon as possible but adjusting to levels slowly is a consideration.  



Quote:

he reduced my verap dose to 320mg daily for a few days

It's possible the lower level of 320 may just suffice for a time anyway, going to 480 when needed.   See what happens as it unfolds.   :)   To get to 320, it seems you are using 80mg verap.  There is always the level of 400mg in between on the way to 480mg to check effectiveness at, too.
 

I did reduce to 320mg daily dose of Verapamil and it so far is keeping the beast at bay. I monitor my BP a few times a day and all is good.

The Imitrex injection is for only when I am away from my #1 abortive, the o2. It is small enough to fit in my back pack when I am out riding my bike.

Thanks again for all the advice and support, appreciate it a lot. :)

barry_sword wrote on Sep 4^th, 2008 at 7:01pm:

Ernie Moss aka Wishbone wrote on Sep 4th, 2008 at 6:32pm: Barry I am fairly new to posting but not to the beast. I saw in the thread you said since you are on verapamil no red bull.  Is that because the red bull negates the affect of verap vice versa or because of dangers.  Dumb do do here am on 480mg of verapamil and drink red bull to kill light shadows.  BP is fine, I don't check it every day.  I have not noticed any problems, but I have not discussed with my neuro either. Wishing you PF days soon and hoping that you don't get hit and need the trex while in the woods. Thanks Wishbone Wishbone, nice to meet you. I am not sure what happens when you mix the two as I am still learning also. I will get someone who can maybe answer this for us.

Hi Guys,

I can't remember who posted this about the Red Bull but, I read that something about the combination of taurine and the Verapamil can be dangerous.  I also read that it is still safe to consume one or two Red Bulls, or other energy drink, per day.  Just don't go over that.

Wishing you many PFD ahead!

Jeannie

Barry,

I recall too well that "nearly passing out" side effect from my verap days - it was terrible! It was "ok" when I was at home (happened 3 times), but not while travelling on London Underground... :-/

The "good" thing about BP dropping a lot was that I got to see my then neuro white as sheet - that took place after he checked my BP. ;D Funny, verapamil lowed my BP only on low doses but high ones (well, high for me...) my BP was ok and I didn't get that side effect any more. Go figure.

I hope you'll be PF very soon!!!  :)

Sanna

Yes Jean, it is the taurine and Verapamil combo that intensifies the effect of Verap. which makes it bad to mix the two. Also my neuro said NOT to have any grapefruit or grapefruit juice while on Verap also as it has the same effect as the taurine and Verap.

Sanna, my BP is almost back to normal, I have never felt the effects of low BP before, kinda scary for me.

This is day three of me trying to get the proper Imitrex injection system. I guess I am the first to have a script for it as the Pharmacist has ordered the wrong stuff twice now. I printed off a detailed(with pics) manual on the system I need so we will see what comes today. I guess I am teaching them about this! LOL

PF wishes to all.
   Barry :)

barry_sword wrote on Sep 10^th, 2008 at 7:14am:

Yes Jean, it is the taurine and Verapamil combo that intensifies the effect of Verap. which makes it bad to mix the two. Also my neuro said NOT to have any grapefruit or grapefruit juice while on Verap also as it has the same effect as the taurine and Verap.

I did that once.  It wasn't fun.  Came close to going to the ER.  Fortunately the symptoms went away after about an hour.

Thumping heart.  Irregular rythm.  Sweats.  No arm pain so I was pretty sure it wasn't an heart attack.  Scary episode.

-Dennis-