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New Message Board Archives >> Medications, Treatments, Therapies 2004 >> Fresh Research - Imitrex Increases Headaches
(Message started by: floridian on Jun 25th, 2004, 8:44am)

Title: Fresh Research - Imitrex Increases Headaches
Post by floridian on Jun 25th, 2004, 8:44am
Lots of people here have claimed that sumatriptan (imitrex) prolongs a cycle or makes headaches more frequent, in spite of the fact that it provides quick relief on a headache by headache basis.  This research suggests those people are right.  Maybe trex doesn't abort a headache - it just postpones it.



Quote:
Headache. 2004 Jul;44(7):713-8.

   Subcutaneous sumatriptan induces changes in frequency pattern in cluster headache patients.

   Rossi P, Lorenzo GD, Formisano R, Buzzi MG.

   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-naive 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 In all patients, the CH returned to its usual frequency within a few days after SQ sum was withdrawn or replaced with other drugs.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.

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Kevin_M on Jun 25th, 2004, 9:28am
That pretty much has been true with me Flord.  Prior to finding a good preventive and without having oxygen, I used imitrex a lot.  Last two episodes were the worst with frequency and their length.  Last one stayed almost eight months, three hits a night, same or more during the day.
 When I got a new doctor, she added oxygen, pred taper and verapamil for the first time.  I was able to use the trex more sparingly and it took me out of the last cycle.
 Perhaps use of trex, because it is effective, but more sparingly may not affect a cycle as much but I was using about six a day/night for months.  
 I had thought  that this study would have this outcome, from my experience and from my new doctor that had thought it too.  On my first visit with her I wrote down the meds I was taking and the frequency.  A correlation could easily be plotted just from that data.  Before I saw her, the last bout was going strong still after six months.  The apex kinda...stayed.


Quote:
Five patients were not taking any prophylactic treatment and SQ sum was the only drug prescribed to treat their headache. Conclusions.-

So, I would certainly believe that with trex as the only medication for treatment, which it was with me, and a prevent which was useless, is not the way I would treat it again.  Who knows how long it may have lasted.

Kevin M

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by ozzman on Jun 25th, 2004, 9:29am
Interesting research with many implications. For the longest time I used to argue the opposite, from previous research. Even though the population sample seems small, anecdotal evidence around this place seems to validate the findings.

The problem is the weaning off. Once you taste PF, how can you possibly go through one attack withou the Trex nectar?

It sucks, but it is doable.


Ozzy

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by peter K on Jun 25th, 2004, 9:59am
What is over use of imitrex? My cycles last 2-3 months. My 8th year w/CH.(480mg of Verp and 100 mg of topamax) I am in 2 months and 10 days now. The HA gets me at 7pm to 9pm then I kill it with the nasal spray then all of a sudden the past 3 days when I abort it I get another one about 2 hours later and need to take another shot and the pain goes away. But I am PF the rest of the night and day just between 7pm -10 pm I get killed. This is my 2nd year using Imitrex nasal spray. Should I be concern? Last night I tried not to use Imitrx the first time( I took 1500 mg of motrin to take the edge off) but still felt the pain and gave up. Feeling that the pain is more intense.  

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by don on Jun 25th, 2004, 10:07am

Quote:
Once you taste PF, how can you possibly go through one attack withou the Trex nectar?


LMMFAO. Well put!

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by JDH on Jun 25th, 2004, 10:12am
I knew it!
Prior to '98 I was basically going through cycles med free and they never lasted more than about 6 weeks. Then my GP prescribed the Imitrex inhalers and later the injections and instead weeks my cycles started lasting months.
I haven't had a shot of Imitrex since early '03 and with the help of o2 and the CBer's I'm hoping to keep it that way.

Jim

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by thomas on Jun 25th, 2004, 10:44am

on 06/25/04 at 09:29:47, ozzman wrote:
The problem is the weaning off. Once you taste PF, how can you possibly go through one attack withou the Trex nectar?

It sucks, but it is doable.


Ozzy

Quality of life is better with less hits and a shorter cycle, just have to "ride it out".  Thanks Floridian.  ;;D  Love it when I'm right. (Happens so rarely, gotta get excited) ;;D

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Samantha_Smith on Jun 25th, 2004, 11:29am
I agree with ozzman.  The pop sample seems very, very small and half the pop was episodic and half of it was chronic.  Plus the study does not address how much and how often they were injecting.  Were these 6 patients using Imitrex as prescribed or were they exceeding the prescribed limit? I think both of those questions need to be answered before making any definite conclusions. Maybe I shouldn't have taken those classes in statistics and methodology.

P.S. Floridian, thanks for posting all of these studies.  I LOVE to read stuff like this. (No joke.)  I appreciate the time you take to search for them and post them.  It gives me hope to know that headaches have not been forgotten about by the scientific community.

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Flash on Jun 25th, 2004, 12:09pm
Want the bad news?

IMHO almost anything that aborts or prevents the headaches will lengthen the cycle and ultimately result in more severe headaches.  The easiest cycles I had were drug free.

It appears as though the headaches are caused by the brain chemistry drifting slowly out of whack, mainly centering on excretions from the pineal gland that are controlled by our defective hypothalamus'.  One result of the headache appears to be increased excretions.  The headaches seem to occur until the brain chemistry returns to normal.  Likewise there seems to be a threshhold below which the headaches occur.  

One you realise all this, you can figure out how it's possible to make episodes much easier and less painful by doing things to increase secretions.  This can help to stave off episodes for a long time, although they DO ALWAYS come in the end.  For instance: sleeping less (actually going down to 5 or 6 hours a night is a good idea), eating a small meal every 3 hours.  Eating immediately prior to bed and first thing in the morning.  NEVER allow yourself toget thirsty.  Take exercise in the morning for 20 mins to increase metabolism for the day.  

Taking these steps I have been able to minimise headaches.

There is one treatment that doesn't have this downside though:  SHROOMS!  These appear to fix the brain chemistry by some other means.


Flash


Title: Re: Fresh Research - Imitrex Increases Headaches
Post by JDH on Jun 25th, 2004, 12:13pm

on 06/25/04 at 11:29:17, Samantha_Smith wrote:
P.S. Floridian, thanks for posting all of these studies.  I LOVE to read stuff like this. (No joke.)  I appreciate the time you take to search for them and post them.  It gives me hope to know that headaches have not been forgotten about by the scientific community.


Ditto.

You bring a lot to the table Floridian...thanks!

Jim

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Flash on Jun 25th, 2004, 12:26pm
I should mention that I only employ that regine during the times I am episodic, the rest of the time I eat and sleep normally.

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Pinkfloyd on Jun 25th, 2004, 1:15pm

on 06/25/04 at 08:44:48, floridian wrote:
Lots of people here have claimed that sumatriptan (imitrex) prolongs a cycle or makes headaches more frequent, in spite of the fact that it provides quick relief on a headache by headache basis.  This research suggests those people are right.  Maybe trex doesn't abort a headache - it just postpones it.


Well hells bells..
I can't wait to email this info to several doctors/researchers that have been telling me for three years that there is no evidence of such a thing.

As to the small sample size, maybe the info collected in our survey will add some data for someone to build upon.

I think someone at the convention should ask the docs from NECH for a response. Should be interesting.

PF

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by BobG on Jun 25th, 2004, 1:30pm
So....
if you use Imitrex to abort you get rid of the pain of one attack but they come back sooner and for a longer cycle.

Or, you don't use Imitrex and you have to suffer through all the pain of every attack but they are fewer for a shorter length of cycle.

Damnned if you do and damnned if you don't.

What a pisser!   :-/

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by thomas on Jun 25th, 2004, 1:40pm

on 06/25/04 at 13:30:47, BobG wrote:
So....
if you use Imitrex to abort you get rid of the pain of one attack but they come back sooner and for a longer cycle.

Or, you don't use Imitrex and you have to suffer through all the pain of every attack but they are fewer for a shorter length of cycle.

Damnned if you do and damnned if you don't.

What a pisser!   :-/

There are a myriad of choices for abortives that are not imitrex, Bob.

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by BobG on Jun 25th, 2004, 1:51pm

on 06/25/04 at 13:40:54, thomas wrote:
There are a myriad of choices for abortives that are not imitrex, Bob.


Have to agree. And not so hard on the heart. And cheaper.

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by ozzman on Jun 25th, 2004, 1:56pm

on 06/25/04 at 13:15:00, Pinkfloyd wrote:
I think someone at the convention should ask the docs from NECH for a response. Should be interesting.

PF



Bob, will do, don't worry about it.

I used to be episodic, then I got access to prevents and lots of abortives ("good insurance company, I guess), now I'm chronic, I've been wondering ever since...


Ozzy

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Prense on Jun 25th, 2004, 2:23pm
I remain skeptical simply because I have not experienced this.  I am not saying it does not happen, but I am fairly certain it will not happen to everyone.  Imitrex has always been known to cause rebound HAs, but this is something entirely different.  This basically says that imitrex induces attacks (triggers) as well as aborts...although the trigger time is not short.  Another thing that has me curious is to why the injections do this and not the pills or the NS.

While it is true that many abortive options exist, not everyone has options.  This is due in part to some meds just not being effective as well as side effects.

Until I have negative results with trex, I'm stuck (pun intended) with it.  Of course, I was chronic for 10 years before even knowing what trex is.

Chris

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by UN_SOLVED on Jun 25th, 2004, 2:46pm
I believe ....  it is a SMALL study ...  but even if it was a HUGE one, the results would look the same. Imitrex may cause longer cycles / harder hits / rebounds.

BUT ... How can you 'ride it out' when it goes for years / multiple hits everyday / severe ?? That sounds suicidal to me.

Even though Imitrex may cause these longer cycles ... doesn't mean that they cause 'chronicness'. People go chronic (severely) without even using Imitrex because of other factors. (health problems, money, doctors, lack of knowledge)

Until they find a drug that can replace Imitrex injections for me ... I'll have to use it ... even if it means death. I'm doomed to use it for a long time. I use TONS of it. Just for example ... I've used 14 (4 - 5 mg) injections in the past 36 hours (approx). There's NO end in sight. I would rather stop my SEVERE HA in 10 - 20 minutes then 'ride it out' (each one) for up to 2 hours !

But .. that's just my opinion  ;)

Unsolved


Title: Re: Fresh Research - Imitrex Increases Headaches
Post by pubgirl on Jun 25th, 2004, 4:03pm
Hi Floridian

As you probably know, we've been discussing this 'over the pond' too and think this research confirms what most believed anyway. Trouble is, many think it's true of 02 as well. :'(

Ho hum, if I ever go chronic, God forbid, looks like a bit of mail order shopping might be happening 8)

Wendy

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Gator on Jun 25th, 2004, 4:24pm
I just wanted to ditto the thanks to floridian for the large amout of research he does and the information he brings to the group.  

You are appreciated more than we tell you, dude.


Gator

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by floridian on Jun 25th, 2004, 4:38pm
Thanks for all the compliments, now stop it before my ego swells anymore.   ;)


Quote:
Trouble is, many think it's true of 02 as well.

That's a scary thought.  I'm hoping that isn't true.

Title: Re:  Fresh Research - Imitrex Increases Heada
Post by Superpain on Jun 25th, 2004, 5:13pm

on 06/25/04 at 16:04:24, andy wrote:
Floridian, Thanks for the info.
I have wondered about this for some time. I am episodic with cycles every few years. I am med free and have been for a long time. My cycles usually last 6-8 weeks with only 02 to abort. I have used the injections a few times, They work great but are very expensive. 02 is cheap, safe, and it works almost all the time.
i have been getting hit a few times daily for a month or so. I have not used trex this cycle. And i hope not to.

........andy

http://pic11.picturetrail.com/VOL377/1008592/1880398/32068028.jpg

That's a nice looking little homemade headache bong you have there... [smiley=laugh.gif]

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by pubgirl on Jun 25th, 2004, 6:28pm
Floridian

Simplistically, what a lot of the sufferers believe is that there are x attacks there to be had, and this number is different for different people, and aborting them means only that they are postponed, not obliterated. i.e. aborting attacks with any agent prolongs the cycle and preventing the attacks works only until the preventive is stopped or the attacks break through.
The exception to this might be ONSI and shrooms/other 'mind altering drugs', but no-one knows if what is happening with these is postponement also, albeit of a longer duration? Who knows as it is all supposition really.
IF it is to do with chemical imbalances in the brain, shrooms might be the big exception, if it is physiological, maybe the right kind of surgery will be the big exception. If ONSi can be made to work more consistently and you get the stimulator for life, that could be the answer.

Just musing here really :-[

We need a whole generation of research, so maybe our kids will be the ones who will know.

Wendy

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by UN_SOLVED on Jun 25th, 2004, 6:54pm

on 06/25/04 at 18:28:07, pubgirl wrote:
If ONSi can be made to work more consistently and you get the stimulator for life, that could be the answer.

Wish the ONSI would've worked for me. Still never done shrooms. Maybe soon !!! (hopefully)

Unsolved

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by eyes_afire on Jun 25th, 2004, 7:35pm
Whoa, I'm freakin out here.


Quote:
Simplistically, what a lot of the sufferers believe is that there are x attacks there to be had, and this number is different for different people, and aborting them means only that they are postponed, not obliterated. i.e. aborting attacks with any agent prolongs the cycle and preventing the attacks works only until the preventive is stopped or the attacks break through.


If true, this concept is biologically profound.  I can't think of any other disorder that acts like that (it's almost like ovulation  :o).

and...


Quote:
shrooms might be the big exception


if this is also true, then time travel using shrooms really is possible (of course, I already know that)   ;;D

--- Steve


Title: Re: Fresh Research - Imitrex Increases Headaches
Post by pubgirl on Jun 25th, 2004, 7:55pm
Steve

I'm struggling here as it isn't my theory, need the others to explain why they think this (where are you Steve Y, Hamster and MOB?) but it is all to do with Ch sufferers having a chemical deficiency, and that deficiency being very acute for chronic sufferers.

Ovulation comparison? Interesting thought. Number of eggs fixed from the start, time they stop being released and frequency/regularity of release depends on the individual and the hormones involved.

Do we have ANOTHER theory developing here ;;D

Oh my God, my head hurts

Wendy


Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Flash on Jun 25th, 2004, 11:05pm
If shrooms postpone things then I have a decades worth coming at once.  I'll just  kill myself now I think.

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Pinkfloyd on Jun 26th, 2004, 2:26am

on 06/25/04 at 23:05:05, Flash wrote:
If shrooms postpone things then I have a decades worth coming at once.  I'll just  kill myself now I think.



Well that wouldn't help with our future data collection.
What kind of a research assistant are you?  ;;D


My theory has long been that whatever it is that is wrong with us, the cluster attack is our neurological system fixing it, resetting itself. The pain is just one of the symptoms of this repair process. If there isn't the pain, the process isn't working properly. No pain, may in some cases mean that the aborted attack didn't have a chance to do any work toward resetting the system. The brain will then still need a replacement attack to do the resetting.
Pain is just something that our system produces. *It* doesn't necessarily think pain is a bad thing, its not any different than say sweating or tearing when you get something in your eye. Its a process. Our system probably looks upon pain as a good thing. Its a warning system, etc. Same as we look upon a smoke alarm going off. Afterall, if the hypothalamus is sending OUT the pain signal, it isn't having to deal (or feel) the pain this signal produces. Now, if my optic nerve had the opportunity to have a chat with my hypothalamus, there might be trouble in neuro-land.

That said, I tried as hard as anyone to make the pain go away each and every time. It was just that for 20+ years, it always seemed like if I was supposed to get three hundred hours of pain in a cycle, I'd get 300 hours of pain in a cycle. If I aborted a couple of them early. I wouldn't have to wait long for my system to send in a replacement firing squad.

It's thought that with those that have success with shrooms, this "resetting" is done by the shrooms, thus eliminating the need for further (and painful) adjustments though the cluster attack system.

Whats nice about these theories is that none of them are intrinsically tied to each other. Better odds of getting one right.
::)

PF

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Hamster on Jun 26th, 2004, 6:46am
Hi Wendy.  Our original discussion over the pond in respect of this issue started off with the possibility that preventative medication prolonged cycles, particularly verapamil.  I would post a link here but unfortunately unless you're a member of OUCH (UK) it won't work.  Michael's theory (I'm sure he'll correct me if I'm wrong) was that this is also the case for abortive medication, in that it does not solve the problem in the central brain but just delays it.  It may be that a certain substance (B) in our bodies needs to reach a certain level before we can kill the CH problem ourselves internally. What if the meds (Substance A) that we take not only suppress the reactions of the body that create the CH in the first place but also suppress the chemical that our bodies need to fight it (Substance B)? That might explain the delay in the end of cycle if our bodies need to get enough of Substance B produced to kill Substance A, and so on? Chronic CH could be because of a deficiency in the body for making Substance B either passed down genetically or through constant use of CH (substance B suppressing) medications??

I agree with Michael to some extent, however, I reckon that the chemicals/hormones that are released that cause CH (substance C) are largely fixed, depending on the type of CH each sufferer has.  For example, a two hit a day chronic sufferer may 'naturally' produce say x mg of substance C, whereas a four hit per day sufferer may produce x+y mg.  An episodic two hit a day sufferer may also produce x mg, but only during the period of the bout; and similarly, a four hit a day episodic sufferer may produce x+y mg over their normal period.

It is possible that the extent of our individual hypothalamic abnormality, probably inherited, dictates the amount of substance C that we release, although this can change over time due to external factors - the old nature/nurture argument - hence some sufferers moving from episodic to chronic, and vice versa.  One external factor is medication, possibly both preventatives and abortives.  If an individual sufferer's capacity of releasing substance C is fixed at any given time, then any medication (substance A) that is used to suppress the release of substance C will do just that.  That is, if you are an episodic sufferer producing x mg of substance C, you will maintain this amount until it has all been released; hence bouts are prolonged through the use of suppressive medication, which may be construed as moving from episodic to chronic.

Having just re-read all that I think I had better try to simplify it.  If we imagine that every sufferer has a pot full of this substance C that causes CH, which varies in size depending on who we are (nature) and how we behave (nurture), then at any given time this pot is fixed in size for an individual.  The size of the pot determines the length of the episodic bout i.e. the bigger the pot the longer the bout.  During a bout, this pot is gently tipped, the substance released, and CH attacks occur until the pot is empty.  The action of medication can be likened to someone stopping the pot from tipping, which temporarily stops the CH, but the pot remains full for a longer period of time.  Eventually the pot starts tipping again, and once again we increase preventative dosages and/or take more abortives, to stop the pot from tipping.  This will go on and on until eventually the pot is empty.  This pot can grow and shrink over time, and chronic sufferers have the added problem of an in-built tap that keeps topping up the pot which will only empty if the tap is turned off.

So, as Michael has said, it's a bit of a Hobson's choice for episodics.  Do we want to keep our pots from tipping too much, but over a longer period of time, or do we just want to empty them as soon as possible?  The former was working for me, but alas no longer.  As for chronic suffering, I just hope someone can find something to turn that bloody tap off (cue Flash/PF et al).

All the best :)
Hamster

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Flash on Jun 26th, 2004, 7:54am
The hypothalamus maintains the body clock.  It also controls the excretion of neurotransmitters from the pineal gland.  If there is a defficiency, or a conversely a glut, or even just an imbalance; this is likely to have something to do with it!  There are many chemicals secreted by this gland, but there are 3 that have are more implicated: serotonin, melatonin, and di-methly-triptamine (DMT).  Interestingly the drug neruontin is based on melatonin and the drug Imitrex is based on DMT.

Lets assume for sake of argument that the we have an imbalance all 3 of these substances, and lets term these jointly 'Complex H'.

We know that sleep impacts of the excretions of the pineal gland, and we have all observed how sleep affects CH.  I'm pretty sure that most of us will also have observed how hunger impacts on CH also, so perhaps eating has some impact on excretions.  Ditto thirst.  We all seen how vigourous exercise can abort a CH, and some people advocate exercising in the mornings to raise the metabolism so the metabolic rate may have some impact on excretions.  Alcohol?  Perhaps.  Smoking?  Perhaps.  Also note how the body itself can choose to postpone a CH until a more opportune moment... even snap out of one in time of crises.

We know that our hypothalamus' are deformed, so may not be keeping very good time, and may not be instructing the correct levels of Complex H to be excreted - hence the imbalance.

In my opinion the headache serve 2 purposes:

1) Altert us that our imbalance of Complex H has reached a critical level, and gives us approx 5mins to address the situation by eating, waking up, drinking, exercising, etc...  

2) In the event that we fail to alter the balance of Complex H in the right direction, the body then does some straining type contortions, to squeeze some more out.  It had been shown that this causes pain, and perhaps any pain, results in an increase of neuro transmitter secretions, specifically serontonin.  Perhaps the greater the pain the better the yield?  Anyhow I agree that the headache serves to alleviate the overall condition of CH.

It appears that with episodic sufferers either the headaches continue until the balance of Complex H is once again perfect.  It may be the case that the excretions themselves aren't that far out of whack, so it may take months, or even years to fall back to the critical level.

With chronic sufferers either:

A) The body is content to raise the level just above the critical point and then let it drop straight back down again, bouncing along the critical threshold forever.

OR

B) The excretions are so far out that the CH process cannot recover the situation on a longer term basis.

Most likely A) or a combination of both.

So yes, when we take something like verapamill, ergotamine, imitrex, even O2, and interestingly painkillers (see how this supports the pain is gain theory), then we simply postpone a headache making the next one twice as sore.  

Personally, when symptomatic, I choose to fight the CH by cutting back on sleep.  Sleeping at the right time.  Eating more smaller portions more frequently, never getting thirsty, and taking some exercise.  I also use shrooms to deliver the knockout punch.


Flash

 

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by pubgirl on Jun 26th, 2004, 8:14am
Thanks Bob, Hamster and Flash for the insights into your thinking. The time you have all taken with this is much appreciated.

I'm off to do some thinking myself when I get a SPARE minute (National newspaper article in the Times today about CH today HURRAH!!!!!, so we will be VERY busy dealing with new people asking questions)

If anyone is interested it can be found on:

http://www.timesonline.co.uk/newspaper/0,,175-1156815,00.html

Wendy


Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Kevin_M on Jun 26th, 2004, 8:41am
Hamster,

So, what I see as the basic difference between your's and Michael's outline is that, Michael's says the signal from the deformed or imbalanced hypothalamus to the pituatary is suppressing the making of substance B and the headaches rectify this situation.  Medications, substance A, do not rectify this situation but relieve the body's reactions, and may in fact maintain this suppression of substance B somehow.
 Your's says that the deformed/imbalanced hypothalamus is sending a signal to the pituitary to
make an erroneous hormone/chemical, (erroneous by the fact it may be a wrong mixing of perhaps proteins forming a hormone which does not seem to have a constructive purpose) substance C, in which a ch is induced to rid the system of it and that it will continue to be made as long as it gets this signal from the hypothalamus.  Medications, substance A, suppress the secreting of substance C, causing the pituitary to to cut back on it's production, but the pituitary has orders to produce a set quantity from the hypothalamus.  Until that complete run of the erroneous substance is made, the cycle will last.
 Just trying to incorporate this into Flash's earlier framework.

Kevin M

*edit* I see pineal gland should be used where I used pituitary.


Title: Re: Fresh Research - Imitrex Increases Headaches
Post by miapet on Jun 26th, 2004, 10:52am
I love the fact that we have so much research and theory right at our fingertips!!  Each of you are our champions as far as I'm concerned (floridian, pink, flash, y'all research and study VERY well)
On the not-so-scientific front:  we have always believed that pharmacy makes it worse . . .and not only worse for the h/as (as in rebound etc) but also worse for the body.  After D figured that out, he quit all the drugs, and dealt with the h/as on his own.  I will say, this last go-round, when we got o2, was an hour after hour slam . . .the o2 would ramp it up to maximum, but then back it off in a much faster cycle than letting the h/a run it's course (maybe that intensity let the body do what it needed to do in a shorter amount of time?) . . anyway, it worked for us until we could take the alternative *g*
We do believe the shroom theory . . .we know it has worked for others, as well as for us.  One of our thoughts on why we have been so successful is:  drug free.  The shrooms didn't have to try and work around pharmacology . . .they could just do their job.
That's our non-science 2cents.
*positive light and energy*
D/miapet

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by ozzman on Jun 27th, 2004, 7:32am
This is for sure the most intelligent exchange of ideas, I have seen in a loong time. Fantastic analysis and a very difficult choice. Pain level and duration were a lot shorter before meds.
What *is* quality of life? Is it like Thomas said, very little or no meds, but shorter and less frequent pain times (episodics and chronics).

Or perhaps like Michael (Unsolved) 999,999,999.999 Imitrex injections a year, but very little pain time.

Choice is a b i t c h


Ozzy

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Kevin_M on Jun 27th, 2004, 8:35am
Well, I've been hit seven times in the last eight years for three to six months at a time, so next cycle, I know there will be some imitrex use.  I am always stockpiled and ready.  However, now that I have oxygen and a better prevent for the next cycle, I will probably try to keep the trex down to two within a 24 hr period, as is suggested and see how that works out.  Maybe over four a day can have this prolonging effect, but sparing use may contribute to a shorter prolonging.  Anyway, I know I've got years to keep experimenting.

Kevin M

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by forgetfulnot on Jun 27th, 2004, 3:02pm
Being chronic I worry that these limited tidbits of study might give the insurance co's more reason to restrict this drug. Personally I have never had the rebounds or other problems some of you have. I don't think we could call this good science at this point.  ;)


Lee......

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by floridian on Jun 27th, 2004, 5:35pm

Quote:
I don't think we could call this good science at this point.


I agree that this question is disputed, and that at this point, we can't say for sure.  It may be that the experiment was poorly designed and came to the wrong conclusions. Or it may be true - don't know yet.

I don't think that we are pre-loaded with a certain number of headaches.  I think that the headaches result from a complex chemical imbalance, and the right medicine(s) could rebalance us to the point of no headaches.   My suspicion is that triptans help in the short run, but for some people, could increase the underlying imbalance.  Metaphors??  Scratching a chigger bite. In the short run it feels great.  But not a good thing to do.  The itching and inflammation just get worse.  

There is something called 'agonist induced down regulation of serotonin receptors' - basically means the more a particular receptor is used, the less active it gets.  Shrooms may work this way - the 5-ht2 receptors get punched by psilocybin, are very active for a day to a week (maybe with more headaches), and then become far less active.  This has the net effect of shifting the balance of activity (overall tone) towards the other 5-ht receptors, with fewer headaches.  The triptans might come at it from the opposite side - the imitrex maxes out the 5-ht1 receptor activity and shuts off a cluster headache, but with repeated use,  the 5-ht1 receptors could become less active, and the balance shifted towards other receptors - making clusters more frequent, or longer cycles.


Title: Re: Fresh Research - Imitrex Increases Headaches
Post by forgetfulnot on Jun 27th, 2004, 8:34pm
Please don't misunderstand me, I am a gardener as well, but had to revert to the older methods not long ago. Keep your options open, you never know. There may be no single answer to this crap.


Lee

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by BlueMeanie on Jun 27th, 2004, 8:48pm

on 06/26/04 at 02:26:28, Pinkfloyd wrote:
My theory has long been that whatever it is that is wrong with us, the cluster attack is our neurological system fixing it, resetting itself. The pain is just one of the symptoms of this repair process. If there isn't the pain, the process isn't working properly. No pain, may in some cases mean that the aborted attack didn't have a chance to do any work toward resetting the system. The brain will then still need a replacement attack to do the resetting.
Pain is just something that our system produces. *It* doesn't necessarily think pain is a bad thing, its not any different than say sweating or tearing when you get something in your eye. Its a process. Our system probably looks upon pain as a good thing. Its a warning system, etc. Same as we look upon a smoke alarm going off. Afterall, if the hypothalamus is sending OUT the pain signal, it isn't having to deal (or feel) the pain this signal produces. It was just that for 20+ years, it always seemed like if I was supposed to get three hundred hours of pain in a cycle, I'd get 300 hours of pain in a cycle. If I aborted a couple of them early. I wouldn't have to wait long for my system to send in a replacement firing squad.


I agree with your theory Pink. To me it doesn't matter what drugs you take. It has to do with the length of time for the brain to repair itself back to normal. If I didn't work and could just live in a cave for 8 weeks without any meds and just suffer I would have a shorter cycle. Unfortunately I MUST abort as many as I can to live a semi-normal life while in cycle. The more aborts, the longer it takes. Prevents seem to make it even longer. I wonder about Chronics sometimes. Shrooms seem to be the only correction without the pain. Haven't tested that theory yet. I would hate to see getting Imitrex more difficult because doctors agree that all it does is prolong a cycle. Gotta have my Trex.

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Kevin_M on Jun 27th, 2004, 9:45pm

on 06/27/04 at 20:48:17, BlueMeanie wrote:
Unfortunately I MUST abort as many as I can to live a semi-normal life while in cycle.


Ain't it the truth.

Kevin M

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Pinkfloyd on Jun 28th, 2004, 1:11am

on 06/27/04 at 20:48:17, BlueMeanie wrote:
I would hate to see getting Imitrex more difficult because doctors agree that all it does is prolong a cycle. Gotta have my Trex.


Well, I'm sure ins. co's use everything they can to justify their formularies but I'm sure the $$'s that Imitrex costs are far more incentive then their concern for our pain.

BTW, there are many medications used for many conditions/injuries that reduce pain/symptoms but are well known to slow down the healing process.

I would imagine there isn't too much difference between healing our wounds and things we CAN see (whether visually or though x-ray/mri etc.) vs. healing things we can't see.

Just like with most things we humans try to fix, the original problem is often more easily fixed than the resulting things we screw up in the process.
Cut down trees for firewood to stop from freezing in the winter and drown in the spring floods/mudslides. In this case, assume the insurance company will buy stock in the timber company and cancel the insurance of the people now living in the new flood plan.  :-/

PF

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by UN_SOLVED on Jun 28th, 2004, 1:24am

on 06/27/04 at 08:35:43, Kevin_M wrote:
 I will probably try to keep the trex down to two within a 24 hr period, as is suggested and see how that works out.  

That simply wouldn't be enough for me


on 06/27/04 at 20:34:44, forgetfulnot wrote:
There may be no single answer to this crap.

I totally agree with this as I believe there are variations in clusters which is causing the differences in each persons attacks (frequency, intensity, duration, and medication(s) / procedures successfullness and failures.


on 06/27/04 at 20:48:17, BlueMeanie wrote:
I MUST abort as many as I can to live a semi-normal life while in cycle.

I also agree with this.
Abort HA = A little sanity from time to time
No meds = Suicidal pain and thoughts / depression / anxiety / etc . etc.  etc.

Unsolved

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Kevin_M on Jun 28th, 2004, 8:20am

on 06/28/04 at 01:24:03, UN_SOLVED wrote:
That simply wouldn't be enough for me


Yeah, a couple of trex a day is hopeful thinking, but now for the next go round I got oxygen, which works too.  It's just a matter of having a second abort to rely on now and see how a different prevent goes.  
 I guess if I can get a shorter cycle out of it next time, that much would be an improvement.  For being episodic, cycles have seemed a might longer than most with the trex alone.

Kevin M

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by pamstroud on Jun 28th, 2004, 11:50pm
This is exactly what I decided when I started taking tiny injections this cycle. 2mg would abort, but I was having headaches every 2 hrs. I also had the same idea about the headaches being postponed. This was the longest cycle I'd had -- 6 wks.

But then this was the first time that I got through the whole cycle w/o having to live through a killer CH. So thank God for Imitrex.

Pam

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by UN_SOLVED on Jun 29th, 2004, 12:36am

on 06/28/04 at 08:20:55, Kevin_M wrote:
Yeah, a couple of trex a day is hopeful thinking....It's just a matter of having a second abort to rely


I'm glad so many people benefit from 02 (or other abortives)...I don't have anything else to rely on besides the TREX.

Unsolved

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by forgetfulnot on Jun 29th, 2004, 12:43pm
Here is a good example of a tainted medical study involving 16,000 subjects, results can be mis-stated.

http://www.smh.com.au/articles/2004/06/28/1088392606339.html?oneclick=true



Lee

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by Kevin_M on Jun 29th, 2004, 7:16pm

on 06/29/04 at 12:43:00, forgetfulnot wrote:
results can be mis-stated.
Lee


Lee,
I appreciate the heads up on research or surveys which can be misleading.  Simply from my point of view, had it even been one person who mentioned that trex might prolong an episode, I would have agreed with them because I have been suspecting so.  
 I would not say a study with six clusterheads would be any basis for fact or even hold water.  It was just that  someone had the inkling about it prolonging an episode and tested it.  Had the results said trex shortened the episode, I would have disagreed, no matter how many were tested.  I seem to think though, more constant use, like about six a day, has had a prolonging affect on me.  
 As a matter of fact, one book I have read more than once has been, "Calculated Risks", how to know when numbers deceive you, Gerd Gigerenzer, 519.2 G.  It was by far the best I've seen on just such things.  A real eye-opener.  
 I just lent my opinion to what was presented, regardless of validity or reliability.

Kevin M

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by chris on Jun 30th, 2004, 5:46am
My neurologist said to many is very bad. I was using 2 or 3 a day and he said he had patient that was also doing this, and she had several strokes in the brain as a result. So be careful. Chris

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by pamstroud on Jul 1st, 2004, 11:24pm

on 06/30/04 at 05:46:37, chris wrote:
My neurologist said to many is very bad. I was using 2 or 3 a day and he said he had patient that was also doing this, and she had several strokes in the brain as a result. So be careful. Chris


Apparently that woman was already at risk for stroke. See the article at:

http://www.medicinenet.com/script/main/art.asp?articlekey=31011

Pam

Title: Re: Fresh Research - Imitrex Increases Headaches
Post by UN_SOLVED on Jul 2nd, 2004, 12:43am

on 06/30/04 at 05:46:37, chris wrote:
My neurologist said to many is very bad. I was using 2 or 3 a day and he said he had patient that was also doing this, and she had several strokes in the brain as a result. So be careful. Chris

I agree that she probably had other underlying conditions ... although Imitrex could cause seriuos side effects from using any amount.
On the othe hand, I've used X,000's of injections, many per day (up to 9 per day). Still here ..

Unsolved



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