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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Trex good or bad ?
        
(Message started by: maffumatt on Nov 8th, 2006, 5:35pm)
Title: Trex good or bad ?
Post by maffumatt on Nov 8th, 2006, 5:35pm
How many people have had their cycles prolonged by using Imitrex? After talking to someone who is going through  the same experience as I did, i would like to see others opinion.

My first year of using it, I used it alot and my cycle went from 2 1/2 months to 10 months . Anyone else have a similar experience?
Title: Re: Trex good or bad ?
Post by JeffB on Nov 8th, 2006, 6:23pm
I've been reading what some have experienced using Trex. My cycles stayed the same regardless, 6-8 weeks.
Title: Re: Trex good or bad ?
Post by thomas on Nov 8th, 2006, 6:39pm
I would like to say that I will never use it again, but we all know about that "never" word.  But I would definately not use it if I can help it.
Title: Re: Trex good or bad ?
Post by Kevin_M on Nov 8th, 2006, 7:15pm
In the many years before finding a prevent that worked, n/s trex was all I had and a lot of ice, it was all I could get in quantity.  As the CH developed from the mid 90's for me it seemed the frequency of hits increased and there was a lengthening of cycles as well as less pf time between them, but I don't know if that was just a natural progression of this affliction or not as it might affect me.
 With the addition of verap and oxygen I use trex very sparingly now but when the verap is under utilized, the high frequency of hits is still there with oxygen and the verap was much faster at extending, eliminating pf time down to no breaks.   Not a lot of luck with oxygen on morning hits, a trex is needed at times still for an extra kick to the beast.  
 Using any medication too much out of necessity never seems right but it's tough to avoid that with CH, until an alternative opportunity arises again.  


For me, trex good when needed and it is all you have.  Trex bad if you don't change that situation.
Title: Re: Trex good or bad ?
Post by E-Double on Nov 8th, 2006, 7:50pm

on 11/08/06 at 18:39:24, thomas wrote:
I would like to say that I will never use it again, but we all know about that "never" word.  But I would definately not use it if I can help it.


My sentiments exactly!

This 2.5 yrs cycle is the first I have ever used meds, other than OTC sinus and advil or perscriptions for the "allergy".
Cycles were never longer than 1 month.
Add meds to the picture 29 months.
Take away meds they ease up but are still here.
Desperate and take a jab b/c lecturing in large public venue.........increase in frequency.

Who knows brother.

E
Title: Re: Trex good or bad ?
Post by JDH on Nov 8th, 2006, 9:37pm
My cycles were usually 4-6 weeks before trex but when I started using the n/s and then the shots they went to 4-6 months. Like some of the others have said I would rather not use it anymore but if you're hurting you do what you gotta do.

Jim
Title: Re: Trex good or bad ?
Post by chopmyheadoff on Nov 9th, 2006, 2:36am
im chronic so i dont know but from what i understand, dont peoples cycles vary in length anyway ??

could that cycle not have lasted 10 months anyway ??
is there a way to know ??

could it be that your looking for something to blame for something thats just coincidence?

Im no doctor but i dont see how treating a symtom of a problem could lead to the cause of the problem extending ..

do u see what i mean ??

the cycle is governed by the hypothalamus, but trex has no effect on the hypothalamus (ie the cause), but only on the swollen blood vessles (the symptoms)

annette ??
Title: Re: Trex good or bad ?
Post by BB on Nov 9th, 2006, 4:14am


This is a bit out of my depth Chop, I am not sure if Trex prolongs a cycle. There isnt any literature on this.

Trex in an indirect way can affect the hypothalamus. It vasoconstricts by blocking the serotonins. Its  in a class of drugs called serotonin antagonists.

Serotonin is a neurotransmitter and its actions can affect the functions of the hypothalamus by biofeedback.

It definitely can cause rebounds if using too much or too frequently. If one sticks to the recommended dose of 2 per day, I guess it wont be as bad, but again I dont really know. Maybe it prolongs the cycle by causing a lot of rebounds?

A question for the neuro at the next visit.

Sorry couldnt help further here.


Annette
Title: Re: Trex good or bad ?
Post by LeeS on Nov 9th, 2006, 6:32am
We've had lots of debates about this at OUCH (UK) over the years.  These two reports may be of interest:


Quote:
Headache. 2000 Jan;40(1):41-4.

Alteration in nature of cluster headache during subcutaneous administration of sumatriptan.

Hering-Hanit R.

Headache Unit, Department of Neurology, Meir General Hospital, Kfar Sava, and the Sackler Faculty of Medicine, Tel Aviv University, Israel.

OBJECTIVES: To document the relationship between the 5-HT receptor agonist sumatriptan and a change in the nature of cluster headache in four cases. To relate the findings to the literature on the use of sumatriptan in both cluster headache and migraine.

BACKGROUND: Studies of the efficacy and adverse effects of long-term treatment with
sumatriptan in cluster headache are limited and report conflicting findings.

METHODS: Four cases are described.

RESULTS: All four patients developed a marked increase in the frequency of attacks 3 to 4 weeks after initiating treatment with the drug for the first time. Three patients also developed a change in headache character, and 2 experienced prolongation of the cluster headache period. Withdrawal of the drug reduced the frequency of headaches and eliminated the newly developed type of headache.

CONCLUSIONS: Determination of the effects of long-term use of sumatriptan will result in more precise guidelines for the frequency and duration of treatment with this otherwise extremely beneficial drug.



Quote:
Headache: The Journal of Head and Face Pain

Volume 44 Issue 7 Page 713 - July 2004

Doi:10.1111/j.1526-4610.2004.04132.x

Brief Communication

Subcutaneous Sumatriptan Induces Changes in Frequency Pattern in

Cluster Headache Patients

Paolo Rossi, MD, PhD; Giorgio Di Lorenzo, MD; Rita Formisano, MD,

PhD; M. Gabriella Buzzi, MD, PhD

Objectives.

To document the relationship between the use of  subcutaneous (SQ) sumatriptan (sum) and a change in frequency pattern of cluster headache (CH) in six patients. To discuss the clinical and pathophysiological implications of this observation in the context of available literature.

Background.

Treatment with SQ sum may cause an increase in attack frequency of CH but data from literature are scant and controversial.

Methods.

Six CH sum-naïve patients (three episodic and three chronic according to the International Headache Society (IHS) criteria) are described.

Results.

All six patients had very fast relief from pain and accompanying symptoms from the drug but they developed an increase in attack frequency soon after using SQ sum. In all patients, the CH returned to its usual frequency within a few days after SQ sum was withdrawn or replaced with other drugs. Five patients were not taking any prophylactic treatment and SQ sum was the only drug prescribed to treat their headache.

Conclusions.

Physicians should recognize the possibility that treatment of CH with SQ sum may be associated with an increased frequency of headache attacks.


-Lee
Title: Re: Trex good or bad ?
Post by chopmyheadoff on Nov 9th, 2006, 7:37am
how can a study on 4 patients - only 2 of those episodic - be anything to go by.

2 of these experienced elongation of the cluster period.
compared to what ? dont episodes vary in length anyway ??
for this to hold any scientific weight you need to be testing more than 4 people . .

come on
Title: Re: Trex good or bad ?
Post by HeadhurtinMama on Nov 9th, 2006, 8:33am
So here is a thought for all to ponder wiser than I.  I have been on SSRI antidepressants since I was 15 for a chemical imbalance that started long before that.  CH started around age 17.  Chronic for most of it.  Chemistry has never been my forte, but I have started wondering if going off of my SSRI might get some change for the better from the beast?  Also, I have given some thought to going the cluster busters route, but am unsure of weaning of the SSRI and the effects of essntially replacing it with the busting?

Bridget
Title: Re: Trex good or bad ?
Post by LeLimey on Nov 9th, 2006, 8:39am

on 11/09/06 at 07:37:16, chopmyheadoff wrote:
how can a study on 4 patients - only 2 of those episodic - be anything to go by.

2 of these experienced elongation of the cluster period.
compared to what ? dont episodes vary in length anyway ??
for this to hold any scientific weight you need to be testing more than 4 people . .

come on


You tell that idiot LeeS Choppy, rip him a new one  ;) (Poor old fool is about my bestest best mate so he really has enough problems as it is!  ;;D )


Bridget I'd pm PinkFloyd or ask this question on a separate thread to get the best answer possible.
My own experience was the getting hit was what was causing me to consider anti-depressants.
Getting rid of the hits by busting took away the need for anti depressants for me so it was "my" answer.

I can't stress enough though that we are all different and each persons busting plan needs to be looked at individually based on what is best for them. I had the very best help possible and I wouldn't want anything less for you.  :) There are experts involved in busters who know more about meds and interactions and alternative meds you could use than I can imagine, you really won't be in better hands ever!
Helen
Title: Re: Trex good or bad ?
Post by thomas on Nov 9th, 2006, 9:03am

on 11/09/06 at 02:36:05, chopmyheadoff wrote:
im chronic so i dont know but from what i understand, dont peoples cycles vary in length anyway ??

could that cycle not have lasted 10 months anyway ??
is there a way to know ??

could it be that your looking for something to blame for something thats just coincidence?

Im no doctor but i dont see how treating a symtom of a problem could lead to the cause of the problem extending ..

do u see what i mean ??

the cycle is governed by the hypothalamus, but trex has no effect on the hypothalamus (ie the cause), but only on the swollen blood vessles (the symptoms)

annette ??

They certainly do vary in length, my first few cycles were about 3-4 weeks in length, then came my diagnosis and imitrex, then they went to 3-4 months with way more hits per day than before.  This went on for eight fucking years.  I quit the trex and BANG!  Back to 3-4 WEEK cycles, so yeah maybe it is coincidence, but in the next 50 years or so if I never have a 3-4 month cycle again, will you believe me then?  I mean, come ON, Jesus H. Christ, trex is amazing, it works so fast and I am able to go on and do what I have to do, but I can bank on getting hit in 3-4 hours after taking the trex.  It's just like anything else, it has different effects on different people, unless you believe that trex is the only thing that works the same for everybody  ::)  I'm not blaming anything for those long cycles, just passing the information on to those who might consider it usfull, I thought that was one of the reasons we are here, I guess I could be wrong about that too though.  [smiley=huh.gif]  I don't think I should be ostracized for choosing not to use a certain drug to treat my CH, when I have found good solid alternatives with more positive benefit.  I'm not telling people not to take it, but some of the reactions I've seen over the years, it seems like some people here are on GSK's payroll.  CH doesn't define me, trust me I try to forget I have it when I'm not in cycle, but I do pay attention to how certain meds affect my cycle in order to make future cycles easier.   I want us ALL to get the most quality relief we can find.  For some people that might be trex, but it most certainly isn't for me.
Title: Re: Trex good or bad ?
Post by BB on Nov 9th, 2006, 9:06am

By the way, one should not combine triptans with SSRI as they are both serotonin antagonists, using them together can lead to serotonin "overdose" which is medically termed serotonin syndrome.

Serotonin syndrome is a serious and dangerous condition which may cause death.

SSRI will need to be wean off very slowly under the supervision of a doctor or psychiatrist.

Annette
Title: Re: Trex good or bad ?
Post by thomas on Nov 9th, 2006, 9:10am

on 11/09/06 at 09:06:53, BB wrote:
By the way, one should not combine triptans with SSRI as they are both serotonin antagonists, using them together can lead to serotonin "overdose" which is medically termed serotonin syndrome.

Serotonin syndrome is a serious and dangerous condition which may cause death.

SSRI will need to be wean off very slowly under the supervision of a doctor or psychiatrist.

Annette



I agree, but I do use SSRI's as a preventive, and a triptan as an abortive, I have had no ill effects, but I wouldn't recommend every one try this.  It is even more dangerous to combine 5htp and SSRI's.
Title: Re: Trex good or bad ?
Post by seasonalboomer on Nov 9th, 2006, 9:16am
Chop, I don't think you can dismiss anectdotal information as useless when it comes to this trex issue. Particularly when you recognize the sources of some of this anectdotal data aren't exactly ignorant of their triggers, cycle characteristics, or recklessly spreading "bad" information.

Personally, I find trex to be a godsend, if the red bull or O2 don't knock out a raging beast. But, and a very important but, based on the information I'v learned from folks who feel as though trex may be involved in altering (for the worse) their CH cycle, I try to use it sparingly.

If I can use it in this manner, carefully, maybe, just maybe, I might be able to avoid what they have learned from experience. I don't see bringing anectdotal experiences such as this as "trex bashing". Hell, if you've had it work for you, there's no one going to tell you that it isn't a miracle in some way. But, like every other good thing in this world, too much of a good thing might just be bad. Maybe?

Scott
Title: Re: Trex good or bad ?
Post by thomas on Nov 9th, 2006, 9:18am

on 11/09/06 at 09:16:33, seasonalboomer wrote:
Chop, I don't think you can dismiss anectdotal information as useless when it comes to this trex issue. Particularly when you recognize the sources of some of this anectdotal data aren't exactly ignorant of their triggers, cycle characteristics, or recklessly spreading "bad" information.

Personally, I find trex to be a godsend, if the red bull or O2 don't knock out a raging beast. But, and a very important but, based on the information I'v learned from folks who feel as though trex may be involved in altering (for the worse) their CH cycle, I try to use it sparingly.

If I can use it in this manner, carefully, maybe, just maybe, I might be able to avoid what they have learned from experience. I don't see bringing anectdotal experiences such as this as "trex bashing". Hell, if you've had it work for you, there's no one going to tell you that it isn't a miracle in some way. But, like every other good thing in this world, too much of a good thing might just be bad. Maybe?

Scott


I couldn't agree more.  Well-said.
Title: Re: Trex good or bad ?
Post by E-Double on Nov 9th, 2006, 9:22am
I wrote a blurb regarding studies on meds for CH elsewhere.

The majority of people with CH are episodic therefore we find that by the time meds are at a therapeutic level it is time to taper off of them OR that we do not find relief quick enough and add or take away something from the cocktail. In addition sometimes we skip cycles and sometimes we have multiple cycles. Our condition is so devestatingly painful that doctors wheter they are educated or not are trying to just get us relief. TOO MANY VARIABLES!
What is needed is a longitudinal (sp??) study so that we can see the effects over time.
Those who are chronic (like you or myself) are in a bit of a different boat. Because it keeps going and going who knows if it is worth making the change or if a change will help or not.

An interesting note.....
I go to NECH which is one of the top headache centers in the world. I am lucky.
I work in an office which shared a building with a pain management center. The neurologist at the center is one of the top researchers in Migraine and always wanted me to test stuff on me. He does also know CH, however his studies are truly empirical.

Here is why. The vast majority of treatment as we know @ pain management clinics are with opiods (and they do nerve blocks) This has to be followed and guaged exstensively.

At some International Neurological Convention, he debated Dr. Diamond and Dr. Tepper, two huge names in Headache.

the points that were made and was exactly what I ststed above and you had mentioned ....too few people and the consistent changes. Too many variables when it comes to prevention of CH's and then abortive agents.
Why is it that some get relief from 6mg of trex yet some can get from a dribble maybe less than 1/3 or even less?? That is another variable that can not possibly accounted for in research.

The point that Matt, Thomas or myself is trying to make is that Prior to attempting meds (whether preventative or abortives such as Imitrex) cycles seemed easier in comparison to now (this is hindsight)

All I know is that it works! BUT there is a change and not for the better. It is immediate relief which is great as I stated when I can not get out of a commitment such as a lecture, but I have to deal with the consequences of more attacks.

I have headache charts that go back for 2+ yrs accounting for every variable. I can display it visually and empirically for there are changes in condition. Any scientist, doctor or lay pereson can clearly see when there was an increase, decrease and stability.

Does everyone do this?
If they did we would have the answers.

All in all it is about reducing pain and living a functional life.
Title: Re: Trex good or bad ?
Post by chopmyheadoff on Nov 9th, 2006, 9:29am

on 11/09/06 at 09:16:33, seasonalboomer wrote:
Chop, I don't think you can dismiss anectdotal information as useless when it comes to this trex issue. Particularly when you recognize the sources of some of this anectdotal data aren't exactly ignorant of their triggers, cycle characteristics, or recklessly spreading "bad" information.

Personally, I find trex to be a godsend, if the red bull or O2 don't knock out a raging beast. But, and a very important but, based on the information I'v learned from folks who feel as though trex may be involved in altering (for the worse) their CH cycle, I try to use it sparingly.

If I can use it in this manner, carefully, maybe, just maybe, I might be able to avoid what they have learned from experience. I don't see bringing anectdotal experiences such as this as "trex bashing". Hell, if you've had it work for you, there's no one going to tell you that it isn't a miracle in some way. But, like every other good thing in this world, too much of a good thing might just be bad. Maybe?

Scott


good post man - hat off to you.

yes, i suppose i do stick up for trex as after 7 years of chronic daily k10s , being diagnosed as tension headaches and being told i was over reacting and to just get on with it - yes - that first shot of trex and that feeling of the cluster vanishing was a turning point in my life.

i appologise if i offended anyone and will keep my opinions to myself in future
Title: Re: Trex good or bad ?
Post by E-Double on Nov 9th, 2006, 9:33am

on 11/09/06 at 09:29:51, chopmyheadoff wrote:
good post man - hat off to you.

yes, i suppose i do stick up for trex as after 7 years of chronic daily k10s , being diagnosed as tension headaches and being told i was over reacting and to just get on with it - yes - that first shot of trex and that feeling of the cluster vanishing was a turning point in my life.

i appologise if i offended anyone and will keep my opinions to myself in future


That part is just rediculous my brother!!!!
A vast majority of people here have been misdiagnosed for decades before receiving a proper dx and tereatment.
Myself included.
We are here to share and learn.
I make dcisions that I feel would be best for myself and family.
I'm sure that you do the same.
Title: Re: Trex good or bad ?
Post by seasonalboomer on Nov 9th, 2006, 9:36am

on 11/09/06 at 09:29:51, chopmyheadoff wrote:
good post man - hat off to you.

yes, i suppose i do stick up for trex as after 7 years of chronic daily k10s , being diagnosed as tension headaches and being told i was over reacting and to just get on with it - yes - that first shot of trex and that feeling of the cluster vanishing was a turning point in my life.

i appologise if i offended anyone and will keep my opinions to myself in future


opinions are good. just realize for every one you have, someone else may have a different one.

trex was turning point in my life also, just as O2 administered properly was, just as FINDING CH.COM was! I'm just thankful for all the input from all the well informed opinions.
Title: Re: Trex good or bad ?
Post by _UNsolved on Nov 9th, 2006, 9:40am
trex has been my savior. Wouldn't be here today without it. I would've already used a bullet to stop the pain without it. I hate using it ... but at the same time ... I have to sometimes. It's either that or 'plan B' which isn't a very good plan (but would be effective)

If it prolongs my cycle or changes the headaches ... it's a side effect I'll have to deal with.

UNsolved
Title: Re: Trex good or bad ?
Post by thomas on Nov 9th, 2006, 9:41am

on 11/09/06 at 09:29:51, chopmyheadoff wrote:
will keep my opinions to myself in future


That's not a good way to look at it.  We are here to share information, not keep secrets from one another.  So we disagree on a point, big fucking deal.  It takes a lot more than some dude on the other side of the internet not likeing my point of view to offend me.  Apology accepted, but totally not necessary.
Title: Re: Trex good or bad ?
Post by LeeS on Nov 9th, 2006, 9:46am

on 11/09/06 at 08:39:35, LeLimey wrote:
You tell that idiot LeeS Choppy, rip him a new one  ;) (Poor old fool is about my bestest best mate so he really has enough problems as it is!  ;;D )

Problems, problems ...  :P


on 11/09/06 at 09:22:46, E-Double wrote:
Does everyone do this?
If they did we would have the answers.

Yes indeed E.  Albeit purely for selfish reasons, but you're right, a data pool would be invaluable.  I've managed to avoid trex for over two and a half years now, but I still wouldn't grudge anyone taking it.

Keep up with the opinions Chop – it's why we are here 8)

-Lee
Title: Re: Trex good or bad ?
Post by thomas on Nov 9th, 2006, 9:49am
That's what C.H.A.T.S. was supposed to be.


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