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Virginia
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Ok, I had my first appointment with the Neuro last Saturday.
Unlike my GP, he had no prob giving me a scrip for Oxygen. He also gave me a scrip for Imitrex pills (what's the point) and Verap. My GP had already given me a scrip for the injections.
My GP had given me a scrip for Verap for 180mg once a day. The neuro's scrip instead was for 120mg once a day for first week and then increase to 2 pills a day in 2nd week until I got to 240mg twice a day. He seems to think that if I'm not getting relief with 240 x 2, then Verap probably won't work for me. whatever! But the insurance company (love them) wouldn't approve his scrip because they said I can't have more than 1 pill a day. What??? So my Dr's office is working on getting the authorization for that. Meantime, I decided to start the 180 a day to get it in my system.
Now, the story on trex. Is there anybody that this DOESN"T work for? First, last week I tried the trex spray. It didn't seem to help and then an hour later I got hit TWICE with back-to-back headaches that were really bad. That was unusual for me, and didn't fit my current pattern.
This week (Monday night) I broke down and tried 1 of the injections and the same thing happened. About a 1/2 later I got hit really hard with a h/a that brought me to tears (first one at that level since the previous Wednesday). Is this a coincidence, or is trex causing this?
Since then, I haven't had any more h/a's that warranted using trex. I think my bad ones have come to an end and I'm back to my daily tolerable ones.
My last issue is this (and I know I'm going to get shit for this). For the 3 (or so) years that I have been without medical insurance I have been taking an obscene amout of OTC meds. This includes massive amts of Ibuprofen & Aleve as well. I know, I know, rebounds! Well, now my challenge is to get myself off all this OTC stuff. I had my liver tested and luckily everything is functioning normally. The neuro said that they could detox me off the stuff but he would probably want to hospitalize me for a week and it would be hell. So he suggested I do it myself but taking a little less Motrin every week until I get down to nothing. This is the biggest thing that scares me. I know I'm in a vicious cycle of headaches and I ddon't know which ones are clusters & which ones are rebounds (they all feel the same). I'm convinced that the motrin keeps my pain away for 6 or 7 hours at a time and when I don't take it the h/a's come more frequently. I'm not professing that the motrin STOPS a h/a while it's happening 'cause it doesn't. I'm just worried that I'll go off this stuff before I've found an actual CLUSTER medication that works for me and then I'll have nothing.
WEll, I didn't mean for this post to be so long. Just stressing out a little and I know some people wanted to know what happened at the neuro's office.
Virginia 
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The Clusterhead formerly known as 9erfan.
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Virginia
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Re: Update
« Reply #1 on: Sep 19th, 2003, 5:12pm » |
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Ok, I'll bump my own thread. Does anyone have any thoughts on the Trex issue (triggering another headache)?
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The Clusterhead formerly known as 9erfan.
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Roxy
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Re: Update
« Reply #2 on: Sep 19th, 2003, 5:29pm » |
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Dammit V....that really sucks about the trex.... 
About the OTC meds, I think you are safe weaning yourself off of them, and for your healths sake....you need to be off all of them. IMHO, they really don't help with the ch's, so all you will do is slowly get rid of your rebounds. Hopefully, your verap will kick in on the ch's.
Do you have your 02 yet? If not, when you get it, it will hopefully help with the ch's too. If you can't use trex, try asking your doctor for cafergot, I know it helps with my shadows....you just aren't supposed to mix it with trex.
Love ya,
T
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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
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SFChris
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Virginia,
I think I recall some others posting that they worried about trex causing rebounds, but I personally haven't heard anyone mention that it may actually stimulate a CH.
As we have discussed - it is extremely important that you start to wean off the massive amounts of ibuprofin and alleve that you currently take - but listen to your doctor on how to do it...
Sorry that you are dealing with knuckleheads who don't know how much verapamil is required. I started to get relief from 480mg, but needed to almost double it before it really worked.
Keep up the good fight!
Chris
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Virginia
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Re: Update
« Reply #4 on: Sep 19th, 2003, 5:45pm » |
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Thanks my friends! Love you guys!
Miss you Tracey!
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The Clusterhead formerly known as 9erfan.
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Jackie
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Re: Update
« Reply #5 on: Sep 19th, 2003, 5:45pm » |
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Virginia.....
Blake swears the imitrex gives him 2 or 3 times as many headaches as he gets when he doesn't use it. He gets relief after a few minutes but another is back in a very short amount of time. Jonny says the same thing......if memory serves me. It's said imitrex doesn't cause rebounds but with Blake it causes "frequency"...
Good Luck, Sweetie.....I'm thinking (hoping) 02 is gonna work really good for you...
Jacks 
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Virginia
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Re: Update
« Reply #6 on: Sep 19th, 2003, 5:49pm » |
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Thanks Jackie. I know I owe you an email! 
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The Clusterhead formerly known as 9erfan.
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Prense
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Re: Update
« Reply #7 on: Sep 19th, 2003, 6:09pm » |
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on Sep 19th, 2003, 5:12pm, 9erfan wrote:| Does anyone have any thoughts on the Trex issue (triggering another headache)? |
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Patrick...where ya at?
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CC
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i too feel that trex may bring on a few extras however, i feel it is woirth it, i would rather suffer 4 headaches in one day for 10 - 20 minutes each than to suffer through 1 or 2 of them for 2 hours a peice!!!
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Ree
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Re: Update
« Reply #9 on: Sep 19th, 2003, 6:29pm » |
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Honey you are gonna blow a hole in your tummy... Man how the Heck are you taking all that OTC stuff... I have faith that you can do this yourself... good luck and prayers going out to you...
about the trex Dave has trouble with it during the peak of his cycle it doesnt work... never has it made the attacks double like yours sorry honey. Feel better insurance companies suck boy do we know that this year... love you ree
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Patrick_A
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Re: Update
« Reply #10 on: Sep 19th, 2003, 6:31pm » |
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Geeesh i hate argueing about terminology. BUT, Before imitrex, I would only get 1 CH a day and always the Nighttime one that woke me. During the worst of my cycle i would get 1 a day. Always tapering up, then back down.
Discovered Imitrex in 1997 after suffering for 20+ years with nothing but Ice. But the weird thing about Imitrex, i started getting CH's during the day, and would get Multiples a day. Originally started thinking these were rebounds, It has been suggested to me this isnt correct.
Heres what happens to me, I will get the CH at night during sleep. I will take the Imitrex Nasal spray. CH is gone within 15 minutes unless it is a KIP9 or greater which means i need to double up. But after the Imitrex wears off, usually about 8 hours later, I will get another CH. If i take the Spray, then 8 hours later...another CH!
If i do not take any Imitrex at all, i suspect i will go back to the 1 a day.
I feel like its almost impossible for me not to reach for the Pain reliever when it the midst of the Beast! So therefore its damned if i do and damned if i dont!
Patrick
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OneEyeBlind
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Re: Update
« Reply #11 on: Sep 19th, 2003, 6:45pm » |
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I don't think Imitrex ever caused me to have rebounds (although my doc would disagree ...... that's why they prescribed the O2 for backup). Anyways, what I did notice was that if the headache was a banger ... Imitrex injections was the answer, if the headache was lower on the kip scale .... use the O2. If I didn't do this ........ seemed I had the never-ending headache. Shadows constantly. Good luck !!!!!!!!
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Prense
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Re: Update
« Reply #12 on: Sep 19th, 2003, 6:52pm » |
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I'll take constant shadows any time over an attack... I have yet to have trex add any type of HA attacks in my short period of time using it. I did get a script for O2 though anyway...which I will use prior to stabbing.
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jonny
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on Sep 19th, 2003, 3:37pm, 9erfan wrote:| About a 1/2 later I got hit really hard with a h/a that brought me to tears (first one at that level since the previous Wednesday). Is this a coincidence, or is trex causing this? |
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Its Trex rebounds, some say it cant happen but it does.
on Sep 19th, 2003, 5:45pm, Jackie wrote:Virginia.....
Jonny says the same thing......if memory serves me. It's said imitrex doesn't cause rebounds but with Blake it causes "frequency"... |
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Frequency....rebounds?......theres a difference?
All I know is that when I was shooting Trex I got three times the HA's and nobody can tell me "It was just the next HA"....cause thats bullshit....I know my head!!!!, damn it
.......................................jonny
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Patrick_A
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Re: Update
« Reply #14 on: Sep 19th, 2003, 7:13pm » |
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on Sep 19th, 2003, 7:06pm, jonny wrote:
All I know is that when I was shooting Trex I got three times the HA's and nobody can tell me "It was just the next HA"....cause thats bullshit....I know my head!!!!, damn it
.......................................jonny
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Same here Jonny, I know my head. 28 years gives me enough experience to know. Maybe its not a Rebound, but more like the CH is going to happen whether i take the Imitrex or not. I know that sounds stupid and i sure as hell cant back it up with any techno med jargon. I just know my head never got more than 1 CH a day before Imitrex!
Patrick
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stevegeebe
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Re: Update
« Reply #15 on: Sep 19th, 2003, 7:51pm » |
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Virginia,
It seems like it's got you comming and going. Good luck on your journey. Maybe you plan will result in some easier days. Keep the tension down and see what happens.
On the rebound/trex issue I offer the following. Earlier in the week I ran out of trex and I was not able to get more till Thursday.
Things were getting better without it. One, maybe two night time visits (and low voltage too). Wednesday was shadow free all day. Great! Thursday evening I shoot my new trex at first hint. It's gone.
Thursday night, Friday morning, I get three attacks before 7:30 am. Rats!
I hoped it was on the way out. Wrong not a very nice person!
Steve G
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Opus
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Re: Update
« Reply #16 on: Sep 20th, 2003, 4:55am » |
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Virginia ,
I have found for me that treatment with one thing doesn't work well and I can resume the CH at a later time. Try adding Ice and black coffee to your trex. Also the detox your dr. suggested can be done with the water x3 which may help your CH too. I am now scared to use the OTC meds when I have a CH coming on, they work great for a migraine but the have many negative effects on a CH for me.
Opu/Paul
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