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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> Need different Meds!!!!!! 
        
(Message started by: E-Double on Jun 24th, 2004, 1:33pm)
Title: Need different Meds!!!!!!
Post by E-Double on Jun 24th, 2004, 1:33pm
Hey all,
Had my crisis in trying to get a hold of some meds from my neuro (who has been sick)
[smiley=bash.gif]

Nurses finally got back to me today after bugging out etc...

Neuro said that essentially gave me so few (Zomig)because if those were the meds that would have been effective than my cycle would have been aborted by the time I was supposed to see her again (yesterday a week later)

At first they seemed to work atleast 1st 2 days the Deamons were gone within 15-30 minutes. Hey alot better than 3 hrs of insanity. I have been taking massive amounts of data on these things ( lucky to have background in data analysis as well) They're stilll out of control.

Turns out that I wasn't supposed to take them all.
Kidding me?????!!!!! I was in such... You guys know!
So I paid out of pocket got some more and took today. Man even with the Zomig I went from 10:03 to 12:11
Too long.

Thing is I already had a mealtdown in front of clients and this has been a real bummer!! [smiley=confused2.gif] [smiley=bomb.gif]

I have another appointment with her next week. I also have an appt. with a different one in July. I will keep that just in case and to get the other opinions.

Thanks for listening and best to all!!!!!  [smiley=bow.gif]

Eric
Title: Re: Need different Meds!!!!!!
Post by Kris_in_SJ on Jun 24th, 2004, 1:54pm
Hi Eric,

So sorry to hear of your recent crisis.  If you can, get your neuro to try you on Imitrex injects for aborting (at least until your cycle starts winding down).  You can carry it in your briefcase, take a bathroom break if nec., and be close to normal in less than 5 min.  Of course Imitrex has its own little side affects, but it would sure be easier than what you're dealing with.

Hang in there,

Kris
Title: Re: Need different Meds!!!!!!
Post by thomas on Jun 24th, 2004, 1:59pm
With zomig, you've got to take it fairly early in the attack.  But if it works, I would ask for more zomig instead of switching to imitrex.
Title: Re: Need different Meds!!!!!!
Post by E-Double on Jun 24th, 2004, 2:18pm
Thomas (Zomig King) & all,
May I ask .... How long have you been taking Zomig?

Also how long does it take to abort?
I ask because those first 2 days were very quick and since, they don't seem to be.
I guess that's relative to how long "we" can deal and cope with it.
I just know that I need relief quick so I can deal with my clients. Given, If it is the right thing then I'll absolutely give it time but (posted this one before) How long does it take for us to know??? I do know scientifically that 1 week is really not enough of a time to determine the effects unless we completely withdraw treatment and then reapply. And that is not ethical nor could I take that.

I feel like the science dork. I developed a scatter plot (type of graph) to try to find patterns. NONE!!!!!!!!!

Thank you again.  :)
Eric
Title: Re: Need different Meds!!!!!!
Post by thomas on Jun 24th, 2004, 2:21pm
I just started taking it my last cycle.  So I took it for about 3 weeks, it aborted about 80% if the ch's I took it for.  (imitrex gives me about the same results).  It works in about 15-30 minutes usually. (for me).  Try throwing in a magnesium supplement, see if that helps you during the day.
Title: Re: Need different Meds!!!!!!
Post by Rock_Lobster on Jun 24th, 2004, 2:33pm
What is your preventative Eric?  The good abortives (Z, Trex) are too expensive to use as the only defense... let alone that having the beast knock that often kinda blows.

Mine this time around == 100mg of Topamax a bed time.
Need about 1-3 abortives a month, and that is typically when I forget to take the Topa for a day or two.

Lobstah
Title: Re: Need different Meds!!!!!!
Post by E-Double on Jun 24th, 2004, 5:08pm
I am on a Prednisone taper & Depakote as preventatives &
the Zomig was the first abortive tried. amongst others in addition (fiorecet>vioxx> if PANIC = Xanax Good one!!!!)


on 06/24/04 at 14:33:45, Rock_Lobster wrote:
What is your preventative Eric?  The good abortives (Z, Trex) are too expensive to use as the only defense... let alone that having the beast knock that often kinda blows.

Lobstah


I guess that since it doesn't appear that they are really knocking out the cycle as quick as I thought, I bugged!
I really thought it would just end! Go figure! I think it's ok! Especially having you guys here!! It too will pass .. ht ecycle will end some day and day by day I feel a bit better atleast emotionally (except for my bug out yesterday SEE Desperate Teacher  :( [smiley=laugh.gif])

The more I learn from you guys I find that some people have longer cycles than others if episodic and for the chronics I just will stand by and support cuz lord knows they need it ESPECIALLY!!

So I got more Zomig for the week and atleast it should help a little better than nothing!!

Thank you as always!!

Eric

P.S. How the hell do you upload a picture into your profile. Kinda nice to put faces with the names or atleast some fun animation.
Title: Re: Need different Meds!!!!!!
Post by Superpain on Jun 24th, 2004, 5:25pm
You don't have O2?

It really helps the triptans last longer....
Title: Re: Need different Meds!!!!!!
Post by Superpain on Jun 24th, 2004, 5:25pm
O2 at home.
Zomig on the road, or for the real bad ones...
Title: Re: Need different Meds!!!!!!
Post by FZfan on Jun 24th, 2004, 6:04pm
o2! o2! o2!

Get thee to a welding shop if you have to and buy a tank and a regulator. Fuck waiting for a script, you can get that later. And if you can't find a mask, ask Superpain how to get by without one. You really MUST try this.

Also, ask your doc about Zomig ZMT. I haven't tried it, but it's a dissolving-type pill supposed to get in your bloodstream faster than the regular pill. 5mg, I believe. Do you know anything about these Thomas?
Title: Re: Need different Meds!!!!!!
Post by thomas on Jun 24th, 2004, 6:08pm

on 06/24/04 at 18:04:42, FZfan wrote:
Also, ask your doc about Zomig ZMT. I haven't tried it, but it's a dissolving-type pill supposed to get in your bloodstream faster than the regular pill. 5mg, I believe. Do you know anything about these Thomas?
I was talking to some one a few weeks ago that tried them, said they worked about as fast as inhalers, I personally haven't tried them, but you can be damn sure, I'll be asking my nurse to get my neuro to prescribe them, next cycle.  ;;D
Title: Re: Need different Meds!!!!!!
Post by FZfan on Jun 24th, 2004, 6:50pm
doc told me about 'em recently so he set me up with a call-in script for when the next cycle comes. I hadn't heard any reports yet on how effective they are but my doc thinks they should be as effective as the spray.

Just another weapon in my expanding arsenal of weapons I'm gathering during this remission. When that next cycle comes I'll be more prepared than I've ever been, thanks to this place.
Title: Re: Need different Meds!!!!!!
Post by E-Double on Jun 24th, 2004, 8:24pm
That's exactly what I got!
The samples are for 2.5 and the Rx was for 5.
They (Dr. office) gave me 12 boxes of samples and I got a script filled yesterday. 6 pills $150 rediculous because i couldn't wait until july 8th to fill it. I know there will be a better solution but for now still better than the LONG BASTARDS!!!! I'll settle for a quicky! LOL


Quote:
Also, ask your doc about Zomig ZMT. I haven't tried it, but it's a dissolving-type pill supposed to get in your bloodstream faster than the regular pill. 5mg, I believe. Do you know anything about these Thomas?


Honestly and maybe I'm a putz for waiting on the O2 but i have nowhere to even put it. and kinda freaks me out! Stupid!!!!!! I know I will see what happens when i give the O2 a try for the first time @ the Fire Dept. Safety i guess.

Later and thanks.
Eric
Title: Re: Need different Meds!!!!!!
Post by Roxy on Jun 24th, 2004, 9:14pm

on 06/24/04 at 20:24:52, E-Double wrote:
Honestly and maybe I'm a putz for waiting on the O2 but i have nowhere to even put it


HUH????
[smiley=confused.gif] [smiley=confused.gif] [smiley=confused.gif] [smiley=confused.gif] [smiley=confused.gif] [smiley=confused.gif]
Title: Re: Need different Meds!!!!!!
Post by E-Double on Jun 24th, 2004, 9:18pm
Educate me more!!!!!!!!! :-[
Are we talking these big tanks like used for emphazima?
Seriously I am still naive to all of this! Except the pain that's been many years!

Thanks
Title: Re: Need different Meds!!!!!!
Post by Roxy on Jun 24th, 2004, 9:24pm
Here you go.....this button is over to the left too.  Just read up on it.

http://www.headachesupportgroups.com/oxygen/oxygen.htm
Title: Re: Need different Meds!!!!!!
Post by E-Double on Jun 24th, 2004, 9:33pm
I've read it and will try it. If i don't get a script will go to get welders'.
Thank you

Funny thing is that I couldn't where the mask when I went for a sleep study way back... go figure another one of us with sleep apnea. I know Clusterheads use it differently but the device kinda freaked me out.

Then again so does the fact that after 10 years of just nocturnal cycles it is now over 1 month that I am getting them during the day as well!!

O2 seems like the way to go...

Question though. and I will make a seperate post...
How transportable are these and what % of those of us here that use O2 take it with them just in case?

All I know is that I'm already foggy from the meds and I can't do my job effectively!!

Thanks in advance.

Eric
Title: Re: Need different Meds!!!!!!
Post by Prense on Jun 24th, 2004, 9:38pm

on 06/24/04 at 21:33:22, E-Double wrote:
How transportable are these and what % of those of us here that use O2 take it with them just in case?


Not very...

An "E" tank worth about 5 attacks is more than ten lbs and about 3 feet tall.  A smaller tank would be more portable but only useful for a couple of attacks at best.  I typically depend on trex injections for portability.

The only time I move my tanks is when they need refilled...

Chris
Title: Re: Need different Meds!!!!!!
Post by Kevin_M on Jun 24th, 2004, 10:02pm

on 06/24/04 at 17:08:20, E-Double wrote:
I am on a Prednisone taper & Depakote as preventatives
I guess that since it doesn't appear that they are really knocking out the cycle as quick as I thought, I bugged!
I really thought it would just end


Eric,

You know, the Pred taper is used until the right amount of a proper preventative can get into your system in time.  Basically, it seems Depakote was prescribed as your prevent.  For some, maybe more, Depakote was not effective.  It was not effective for me.  This may need attention.  And, by "bugged", does that mean you stopped taking them?  If so, you are without any prevent now.  I'd do something about that.  Maybe that other doc appt on July 1 will help, thats some time yet though.  Aborts only will keep you behind the eight ball.

Kevin M
Title: Re: Need different Meds!!!!!!
Post by don on Jun 24th, 2004, 10:17pm
I do the prednisone taper every cycle. Doing it now. Is there any particular reason you are using Depakote rather than verapamil as the preventative?
Title: Re: Need different Meds!!!!!!
Post by FZfan on Jun 24th, 2004, 10:54pm
don't be scared of the o2 e-double. I've got an e-tank sitting in the corner of the room right now. It has a quick connect regulator, so you can leave the regulator off until you need it. This is very safe.

It is very important to follow the directions in the link on the left. The idea is to saturate your blood with o2 so be sure when inhaling you are getting o2 only. My experience has been complete relief in 10 minutes, even when getting the good 'ol 2am wake-up attack. Your mileage may vary, but even if o2 only aborted half of your attacks, that's that many less pills you had to take.

To be sure, o2 doesn't work for everyone. But the percentage of us it does work for is pretty high, chances are it will work for you.

I've said it a million times, but I'll continue to say it, the feeling of that terrible attack melting away suddenly after breathing pure o2 for a bit is an indescribable feeling. Please try it and tell us if it works for ya.

Keep up the fight, e-d, you can beat this prick.
Title: Re: Need different Meds!!!!!!
Post by E-Double on Jun 25th, 2004, 2:37am

Quote:
My experience has been complete relief in 10 minutes, even when getting the good 'ol 2am wake-up attack. Your mileage may vary, but even if o2 only aborted half of your attacks, that's that many less pills you had to take.
Its' 2:28 in NY and I'm exhausted. Would love that feelin to just go away and be able to sleep!! Gotten to point where I think I would "feel" more pain if I could feel my body haha!
It's been -4 hrs a night of sleep for the month and I think delirious.

Quote:
To be sure, o2 doesn't work for everyone. But the percentage of us it does work for is pretty high, chances are it will work for you.
Tend not to gamble ut sounds like a good one and don't want to have to take a freakin pill if it might be a "killer" Like right now I'm having something pretty high up there. Woke me up and hurts like hell but I know I've had worse. So I don't want to risk having too many meds in my system because just in case I need to take something!! I'm already bugging over having to go to a clients house and the what ifs!!!


Quote:
Keep up the fight, e-d, you can beat this prick.
You bet!!!!!!! Thanks!!! E
Title: Re: Need different Meds!!!!!!
Post by Superpain on Jun 25th, 2004, 4:22am
If you get a script for O2 and get a high enough flow rate, or you use my method with welder's, it will work or I will pay to have your brain replaced.
Title: Re: Need different Meds!!!!!!
Post by E-Double on Jun 25th, 2004, 4:34am
Replace it now!!!!!!! It's gonna blow!!!!!!!! [smiley=bash.gif]
on 06/25/04 at 04:22:28, Superpain wrote:
If you get a script for O2 and get a high enough flow rate, or you use my method with welder's, it will work or I will pay to have your brain replaced.
guess this is the good time to have that O2 I was able to pace off the 2 o'clocker and get an 1hr of sleep in but
Now at 430 I'm done and I said screw it took a zomig and now gonna walk my deck!
Thanks again man
You guys truly like family
Eric
Title: Re: Need different Meds!!!!!!
Post by Superpain on Jun 25th, 2004, 5:00am
Could be worse...
Just think if crack was the only abortive for ch and you'd have to smoke the dollar equivalent to a triptan. [smiley=laugh.gif]
Walking the deck ain't so bad. Hell, alot of us don't even have a deck!

Get some O2!

If you can't get a script pm me...


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