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Topic: and you're NOT CONCERNED? (Read 795 times) |
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brain_cramps
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and you're NOT CONCERNED?
« on: Nov 6th, 2003, 11:34am » |
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Here is a few of the quotes from a thread I started about longer cycles with the use of Imitrex.
A couple of things amazed me:
- that more people didn't reply
- that the thread dropped out-of-sight as quickly as it did
- that nobody sees a pattern here ( OR if they do, they don't care!)
on Oct 29th, 2003, 12:31pm, Boots wrote:| i first started with ch when i was 18 (now 42) the first 12 years there where no drugs that colud touch them or doc's that knew what they were. the cluster would last 6 weeks and every ha would last for almost 1 hour to the minute,remember those ? since getting trex in the early 90's each cluster now lasts for 5 months... |
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on Oct 29th, 2003, 8:05pm, brain_cramps wrote:| ...since being med-free, my cycles have gone from 6-8 weeks down to 18 days last cycle... |
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on Oct 29th, 2003, 7:48pm, Bob_Johnson wrote:| Just read a medical report a few days ago in which several people reported their cycles were longer after heavy Imitrex use... |
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on Oct 29th, 2003, 8:21pm, jonny wrote:| ...Although im chronic and never used trex until two years ago I found out that I had three times the HA's while using it, I know many here say that theres no such thing as rebounds....can anyone tell me why when I stop the trex the HA's go back to my normal pattern?... |
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on Oct 29th, 2003, 8:52pm, Joanie wrote:| ...I had the worst cycle ever this year. Normal cycle is 3 months....it was well over 6 months, frequency of attacks as well as the length of each attack increased this year. Was trying to figure out why, but I was taking different meds than I usually do. I also used the trex nasal spray for the first time as well... |
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on Oct 29th, 2003, 9:57pm, maria9 wrote:| ...I have read in the literature about imitrex changing the nature of a cluster cycle, i.e. more headaches, damned if you do, get relief in short order, but then the headaches are back in full force before the normal "scheduled attack."... |
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on Oct 29th, 2003, 11:35pm, JDH wrote:...I definitely think the trex extends the cycle. When I used to do this med free my cycles were like a month to 6 weeks. I started using the trex in '97 and my cycles have gotten longer each time around.
And yeah Jonny, I'm not convinced either that it doesn't cause rebounds. It seems like the more I use the more I need... |
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on Oct 29th, 2003, 11:42pm, Ree wrote:| ...Daves believes this also. When he didnt rely on meds to abort and sort of let the attacks run their course his cycles seemed shorter almost as if the CH has to get to a certain intensity before it would stop... |
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on Oct 30th, 2003, 12:05am, Patrick_A wrote:Imitrex causes me to have more CH's and at abnormal times. If i dont take imitrex. I rarely get more than the one a night that wakes me. When i take imitrex, i get numerous CH's a day.
I've argued this topic for 3 years and everyone that argues against it wants to get technical about it. IE...Rebounds!
Call it what ya want, i get more CH's when i take Imitrex!... |
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on Oct 30th, 2003, 8:56am, LasVegas wrote:...Past....In the past 25 years of CH's, my cycles usually skip 2 or 3 years then hits in the Fall for a couple weeks and killed by meds or goes away on it's own.
Present....this cycle has lasted 4 or 5 weeks, coincidentallt the first time I have tried Imitrex... |
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on Oct 30th, 2003, 9:06am, thomas wrote:| My cycles have been longer, with more frequent attacks while using imitrex as an abortive. I haven't used any this cycle. This cycle has only lasted 3 weeks with only one ch a day. There were 3 days total that I had 2 chs... |
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on Oct 30th, 2003, 9:07am, Tim_w wrote:...I dont know if it relates to the Trex or not
I used to get CH spring & Fall Started For 3 months
I started taking trex and they went to winter and summer now Iam Chronic
I took trex for 6 years 2 and 3 shots a day
If I take Trex now I get hit more often and harder ... |
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on Oct 30th, 2003, 9:13am, maggie_may wrote:| I can't say if it was the Imitrex or not. Last year was the first year I was medicated for my cycle. It was also the longest I've ever had - lasting from mid-October to mid- March... |
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<< CONTINUED >>
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| « Last Edit: Nov 6th, 2003, 11:39am by brain_cramps » |
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brain_cramps
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Re: and you're NOT CONCERNED?
« Reply #1 on: Nov 6th, 2003, 11:35am » |
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on Oct 30th, 2003, 1:48pm, Margi wrote:| ...Mike's cycles have always been longer when meds have been involved. I can't pinpoint it to Imitrex though, because he's done a few cycles without it. This last one, however, he did use the nasal spray, pred burst, verap and lith combo and had his longest cycle ever, 6 months. Unmedicated cycle prior to that, using only oxygen as an abortive was 2 - 3 months. |
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on Oct 31st, 2003, 12:10pm, Unsolved wrote:| Although I am chronic...I believe the more Trex I use, the more attacks I will get (and more severe)... |
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on Oct 31st, 2003, 3:44pm, miCHel wrote:| ...I started using Trex regularly (very regularly) during my last cycle and it did last a few weeks more than what I usually get... |
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and a couple who disagreed...
on Oct 29th, 2003, 8:15pm, paul_b wrote:| didn't notice any change in duration before or after use of Im... |
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on Oct 30th, 2003, 9:47am, Melissa wrote:| This year was the first for me medicated. Taking 250mg Depakote, 6mg Imitrex shots, and aleve for shadows. I had little change in my cycle duration. It was actually like 3-5 days shorter.... |
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Doesn't anyone see a pattern here?
and before you give me shit for misquoting you, go back and look. These are all actual quotes. The only difference is when a statement was qualified with something like "but it works sooooooooo good...", that was omitted.
just fucking amazed,
grant
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| « Last Edit: Nov 6th, 2003, 11:38am by brain_cramps » |
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thomas
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Re: and you're NOT CONCERNED?
« Reply #2 on: Nov 6th, 2003, 11:45am » |
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Yeah, and I don't use trex any more. I am surprised the thread disappeared also. You can lead a horse to water...
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Bob P
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Re: and you're NOT CONCERNED?
« Reply #3 on: Nov 6th, 2003, 11:54am » |
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Last cluster I tried shrooms, 4 times. It was my longest cluster bout ever! 15 weeks. Ya think?
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brain_cramps
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Re: and you're NOT CONCERNED?
« Reply #4 on: Nov 6th, 2003, 11:55am » |
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I realize that for chronics (or episodics with LONG cycles), there may not be a better route.
just had to throw that in,
grant
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Mark C
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Re: and you're NOT CONCERNED?
« Reply #5 on: Nov 6th, 2003, 11:58am » |
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I am absoutly concerned. There is definatly a connection here somewhere....however not all Clusterheads suffer from re-bounds. I agree many do....I do not. More professionally research, controlled lab studys to scientifically PROVE with empirical data needs to be done. There may be many other factors besides Imitrex use that helps contribute to the rebounds. Are the recommedned doses being surpasssed? My Neuro limits me to one shot per day. I have taken two, but would do 10 if I thought it would help.
There are some on this board who have used much more Trex than me and I would be curious as to their responses to this topic.
My friend Grant, I am NOT trying to argumentive....I just want the truth.
Maybe I am a bit biased simply because Imitrex works so well for me I may be a little defensive....I will examine that....however....given my current state I haven't needed Trex in two weeks now.....fungus and good old oxygen are leaving me PF. 
I wish some big University or Hospital would do a more in depth study of Imitrex and other drugs for that matter into the bottom line about rebounds.....more will be revealed...I hope. Maybe this Dr Supranow University study can shed some light on this.
Good topic, makes me think.
PFDAN's
Mark
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JDH
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Re: and you're NOT CONCERNED?
« Reply #6 on: Nov 6th, 2003, 12:18pm » |
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on Nov 6th, 2003, 11:35am, brain_cramps wrote:
Doesn't anyone see a pattern here?
just fucking amazed,
grant
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I hear you Grant, pretty f'n amazing.
IMO (and it looks like I'm not alone) Imitrex can and does cause rebound's.
Jim
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Roxy
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Re: and you're NOT CONCERNED?
« Reply #7 on: Nov 6th, 2003, 12:27pm » |
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All I can do is compare my time without trex to the time with trex. I am not giving up my trex. I'm just not that tough.......  .
Feel a little like Charlton Heston...."You can have my trex when you pry it from my cold dead hand".....or something like that....... 
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Cerberus
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Re: and you're NOT CONCERNED?
« Reply #8 on: Nov 6th, 2003, 12:33pm » |
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Oddly enough,
Only my second year with trex, 02, and Verapamil. None of which seem to make any difference in length and intensity of my CHs or cycle. The use of these three meds has actually made this years cycle quite a bit more tolerable. Last year at this time I was reeling on the floor 6-12 times a day. I WAS ,however, taking the full 6mg. stat dose and one immitrex pill before bed,This year with the reduced dosage, less pain, more sleeping at night, and still using plenty of O2. length of Cycle so far has been almost identical even though the times I have been getting hit are quite different. My imitrex has been far less used this year as compared to last.
Not necessarily disagreeing......but not consistant with your theory either. this year more hits during the early morning, and early evening hours than during sleep times, MY Psychologist says that my anti-depressant MIGHT be partially blocking the pain, as there is research in progress to see if it has those capabilities.
Who knows,
Ramon
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brain_cramps
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Re: and you're NOT CONCERNED?
« Reply #9 on: Nov 6th, 2003, 12:34pm » |
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on Nov 6th, 2003, 12:27pm, Roxy wrote:| All I can do is compare my time without trex to the time with trex. I am not giving up my trex. |
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I realize you're chronic.
If I was chronic and I was gonna get hit regardless, there's no way I'd give it up either.
Episodics, on the other hand, have a choice.
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Mark C
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Re: and you're NOT CONCERNED?
« Reply #10 on: Nov 6th, 2003, 12:38pm » |
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on Nov 6th, 2003, 12:34pm, brain_cramps wrote:
Episodics, on the other hand, have a choice.
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Not when I am getting hammered.
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JDH
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Re: and you're NOT CONCERNED?
« Reply #11 on: Nov 6th, 2003, 12:42pm » |
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on Nov 6th, 2003, 12:34pm, brain_cramps wrote:
Episodics, on the other hand, have a choice.
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and my choice, http://www.clusterbusters.com/
seems to be keeping the beast outta my head this fall.
I've been pf since 2/03 and hoping to stay that way for good  .
Jim
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Re: and you're NOT CONCERNED?
« Reply #12 on: Nov 6th, 2003, 12:45pm » |
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I there with ya JD.....aint needed triptans for two weeks now! Fungus amoung us WORKS! O2 does too......I love this place. PF in the middle of Fall...never in my adult life has this happened....thanks to "Truffles"!
Mark
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Re: and you're NOT CONCERNED?
« Reply #13 on: Nov 6th, 2003, 1:25pm » |
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on Nov 6th, 2003, 12:45pm, Mark C wrote:.I love this place. PF in the middle of Fall...never in my adult life has this happened....thanks to "Truffles"!
Mark |
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Ain't it cool Mark? I'm so looking forward hoisting a drink on New Years eve instead of poking holes in myself with 'trex needles.
Definitely a fall/winter to remember.
Jim
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brain_cramps
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Re: and you're NOT CONCERNED?
« Reply #14 on: Nov 6th, 2003, 1:42pm » |
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Next spring ( when IF i go into cycle --- always the optimist), i want to get set up with o2 and fungus. just not sure if years of "prolonged and frequent recreational use" will make a difference. (not o2 )
grant 
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| « Last Edit: Nov 6th, 2003, 1:45pm by brain_cramps » |
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thomas
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Re: and you're NOT CONCERNED?
« Reply #15 on: Nov 6th, 2003, 1:49pm » |
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I'm trying them next time too 
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DJ
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Re: and you're NOT CONCERNED?
« Reply #16 on: Nov 6th, 2003, 1:53pm » |
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Ok, this thread brings up a good point!
If you had to choose between one of the following:
A) Having a longer cycle, with more frequent cluster's that you know you can control in 10-15 minutes with a shot... without the pain ever going above a Kip 3-5 on the scale...
OR,
B) Having a shorter cycle, with less frequent cluster's that you know will last at least 30 minutes - 3 hours, and the pain going above a Kip 6-10 on the scale...
Which one would you choose?
Wait, I'll need to install a "poll modification" to the board for this one.........
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aprilbee
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Re: and you're NOT CONCERNED?
« Reply #17 on: Nov 6th, 2003, 1:58pm » |
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I'd have to go for "A" at least you can have some kind of life!
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brain_cramps
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Re: and you're NOT CONCERNED?
« Reply #18 on: Nov 6th, 2003, 2:07pm » |
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DJ
(B) is my answer.
About 7 years ago, I was FORCED to go med-free due to financial/legal problems. The first couple cycles, it was tough. Now, the only way I'd go back is if my cycles started getting longer by themselves.
While my cycles were originally around 6 - 8 weeks, I'd much rather have 18 days of 3 hr HAs than months of of short HAs.
When the counting is in months, it is a long time to worry about when the next one will hit. I much prefer to count in days.
At 18 days (and hopefully shorter next time), I'm hoping to SLEEP thru it next time.
(also, never above a KIP 3 to 5? --- LMAO)
grant
BTW DJ... When a post is too long and gets an error, hitting the "Back" below the message send you back to a blank reply screen. So does hitting the back button of your browser. 
Eventually ended up composing that pile of quotes in Notepad instead. Not complaining... just warning the next person.
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| « Last Edit: Nov 6th, 2003, 2:15pm by brain_cramps » |
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JDH
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Re: and you're NOT CONCERNED?
« Reply #19 on: Nov 6th, 2003, 2:10pm » |
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on Nov 6th, 2003, 1:42pm, brain_cramps wrote:Next spring ( [s] just not sure if years of "prolonged and frequent recreational use" will make a difference. (not o2 )
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Grant,
I've also done my fair share recreationally in the past and as far as I can tell it hasn't made a difference.
DJ,
Until you get the poll up I'd say if I had to pick I guess I'd take the longer cycle w/less pain.
I did it med free for 12 years w/shorter cycles but those suckers REALLY hurt and I don't EVER want to go through that again.
Jim
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9-11-01, to remember is to honor.
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thomas
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Re: and you're NOT CONCERNED?
« Reply #20 on: Nov 6th, 2003, 2:35pm » |
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My first 5 years were med-free 6-15 total attacks over 3-4 weeks. Went to a Dr. because I couldn't take it anymore. They gave me imitrex. I thought WOW! Proceded to have 4-5 attacks a day for 2-3 months. I did this for 4 years. Now I said screw imitrex and have had a 3 week cylce again. My choice, and I stress that it is my choice, is not to take trex again. I have had good results with amerge and zomig - Those will be the abortives I use in the future.
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Mark C
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Re: and you're NOT CONCERNED?
« Reply #21 on: Nov 6th, 2003, 2:43pm » |
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on Nov 6th, 2003, 2:35pm, thomas wrote:| My first 5 years were med-free 6-15 total attacks over 3-4 weeks. Went to a Dr. because I couldn't take it anymore. They gave me imitrex. I thought WOW! Proceded to have 4-5 attacks a day for 2-3 months. I did this for 4 years. Now I said screw imitrex and have had a 3 week cylce again. My choice, and I stress that it is my choice, is not to take trex again. I have had good results with amerge and zomig - Those will be the abortives I use in the future. |
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I think Thomas makes an excellent point.....very few things have worked for everyone....hell has anything worked for everyone? The key seems to be patience and educating yourself and maybe your Doctor and keep fighting.
Personally, I am for WHATEVER works.....bar no treatment just because it didn't help you personally. In 27 years I have yet to find the "magic cocktail" to prevent CH. All I can do is abort...but I still can hope
Mark
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Jimi
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Re: and you're NOT CONCERNED?
« Reply #22 on: Nov 6th, 2003, 3:18pm » |
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Well I have never taken Trex and my cluster cycle have gotten longer and longer the last few times. From once a year, lasting 6 weeks to the last two cycles that went 3 years but lasted 6 mos both times. Keep in mine I have had these over 30 years and the times end between have been longer and longer. The bad news of course is that when they DO come they stay around longer. I think as I have gotten older, and my arteries and vessels are not as flexible as they were when I was younger that they don't expand and dialate as they once did. I guess that is not a good thing. As of right now, I am 3 1/2 years pain free and as before, hoping that I have outgrown them. For me, it wasn't the Trex that seemed to be causing more frequent headaches but it coincided with when I started using O2.
Go figure,
Jimi
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thomas
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Re: and you're NOT CONCERNED?
« Reply #23 on: Nov 6th, 2003, 3:22pm » |
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Thanks, Mark C. I think you have to keep experimenting untill you find what works best for YOU. You and I agree 100% on that. I know there are some here who can only get relief from trex - No question if I was in that boat I would still take it. But I'm not and I wont. And I'm not saying anyone else has to change, but if another abortive works for someone they should at least try it in leiu of the trex. Hey Jimi have you ever tried melatonin?
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Jimi
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Re: and you're NOT CONCERNED?
« Reply #24 on: Nov 6th, 2003, 5:05pm » |
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Nope, never tried it. It has been discussed here from time to time. Especially 2-3 years ago. Mixed results as I remember.
Jimi
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