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warning to all on preventatives and abortives (Read 4841 times)
AgentOrange
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warning to all on preventatives and abortives
Jul 10th, 2010 at 7:09pm
 
i have suffered for 10 years and been on nearly all meds supposedly for cluster headaches

i wish to inform the side effects

Verapamil - low heart rate - found myself in hospital with a HR of 47, one also becomes dependent on the drug, if u miss a dose or even by an hour or two u get hit, turns most episodic sufferers chronic like my self

lithium - feeling of loopyness, kidney stones, not as bad as a CH but still, urinating blood is not cool and they do hurt terribly

imitrex - only 2 a day, causes rebounds prolongs cycles and increases intensity over time

predisone - works great at the beginning, but will find one's self needing more and more and longer usage to keep of CH

dexamethasone - AVN extreme hip pain, bone degeneration and bone necrosis or death of the bone, stretch marks, loss of hair, rapid weight gain, fluid retention . . . if i took my shirt off on the beach id find my self alone the marks are horrible

these are the most effective and prescribed meds for CH and can have devastating effects

i am a victim of all of these meds and their side effects and wish to warn others of their use so u do not end up like me

02 is the best abortive and safest and cheapest

i have personally cut out all mainstream meds and find myself better off using alternatives o2 NRG drinks RC seeds and such, i will neversee a doctor for my CH, they dont know what causes them so how can they help you?

please everyone be careful of your meds and make sure your doctor does frequent ekg's and bone density tests while on the above meds, i know u think it might not happen to you but it happened to me, im 24 and walk like im 80 and now going for hip surgery

sure these meds work great at the start but they fall off over time and when u cant take them any more and u still got headaches u feel pretty dumb for using them

your life is your choice but just to inform and warn because my so called doctor didn't warn me and im sure there are others like him out there

i refuse to ever take a man made pill or injection for my headaches ever again

good luck to all in fighting your pain

AO
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Re: warning to all on preventatives and abortives
Reply #1 - Jul 10th, 2010 at 7:12pm
 
Well said.
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AussieBrian
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Re: warning to all on preventatives and abortives
Reply #2 - Jul 10th, 2010 at 7:34pm
 
There's many CHeads who use no meds at all, for whatever personal reason, but the key to it is knowlege so we can make our own informed decisions.
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Re: warning to all on preventatives and abortives
Reply #3 - Jul 10th, 2010 at 8:23pm
 
20 years plus on lithium here. I have fortunately not suffered any of the side effects you have. Potential side effects are just that...potential. There are several on the board who do as you do, no prevents and no aborts other then oxygen. That's what works for them. If that works for you, great. Lithium continues to block up to 70% of my attacks while on cycle. I ceertainly won't be dropping it any time soon.

To the newbies on the board. There are thousands of people like myself who succesfully use lithium, verapamil and topomax with none of the side effects mentioned in this post. They substanitally reduce the number and intensity of their hits, greatly improving the quality of their life. All meds from aspirin to morphine have the potential of mild to serious side effects. It's a decision you should make with your doctor after educating yourself as to all the pros and cons.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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AgentOrange
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Re: warning to all on preventatives and abortives
Reply #4 - Jul 10th, 2010 at 9:11pm
 
by no means am i trying to stop people from using their meds. i had success with them for quite some time, but i have the problems and got the side effects from not being monitored while on the meds

im just trying to make people aware of what might happen and to talk to their doctors about preventing it

my worst problem has been the avn from steroid use, this shit seriously sucks, one can have it years before the pain is felt, steroid users can start developing avn with one med dose pack, though you wont feel anything until its too late, a simple mri periodicly is a good way to check for this. steroids wich reduce inflamation basically hide the pain until the bone really starts to die. it happen to me 6 weeks after i got off the steroids,

like u have mentioned it greatly improved my life and then turned it worst

i went to my doctor and showed him the marks and complain about pain in my hips and he simply wrote me another script for the steroids because my headaches came back. if there is one bogus doctor there are more

all i want people to do is be aware of what they put in thier body and what is going on inside them, doctors are script writers, their practice is based on dealing with many people who have the samne problems and if it worked great for the last 10 here ya go it will work for you

we are all different ive talked to a few people who have been diagnosed with avn from steroid due to CH
that is my main concern

like the title states "warning" thats all i want to do here

i am glad u have found relief and it hasnt effected you negatively and wishing you continuous pain free days and nights

AO
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« Last Edit: Jul 10th, 2010 at 9:12pm by N/A »  
 
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Re: warning to all on preventatives and abortives
Reply #5 - Jul 10th, 2010 at 9:23pm
 
hi AgentOrange

just some help if possible cause english is not my native language and i can't find a translation.what exactly is  loopyness?or if there is any other similar to its meaning word maybe?
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Re: warning to all on preventatives and abortives
Reply #6 - Jul 10th, 2010 at 9:39pm
 
don't bother. i found it.
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Re: warning to all on preventatives and abortives
Reply #7 - Jul 10th, 2010 at 10:06pm
 
Shades of Ali
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AgentOrange
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Re: warning to all on preventatives and abortives
Reply #8 - Jul 10th, 2010 at 10:18pm
 
feeling silly, poor coordination, slow, equalibrium off, unbalanced
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Re: warning to all on preventatives and abortives
Reply #9 - Jul 11th, 2010 at 7:44am
 
Quote:
turns most episodic sufferers chronic like my self

What is your proof of this?
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Re: warning to all on preventatives and abortives
Reply #10 - Jul 11th, 2010 at 8:37am
 
Unfortunately AO in his posts has pointed to a bit of a problem these days with Dr's even if he did it unintentionally.

Many times I've seen or heard of a Dr. reaching for the prescription pad all to quickly and seeming to forget his pledge to "first do no harm".

They prescribe one pill and when you get an annoying
side affect from it they prescribe another pill to counter act the annoying side affect of the 1st pill. It's a vicious cycle that can go on and on if you don't speak up as a patient to find a "better" alternative to the 1s pill.

I seem to be hearing about this more often in recent years I'm not sure if it's laziness on the doctors part or pharmaceutical co. kick backs or just plain lack of empathy for a patient. Unfortunately as CH sufferers/survivors we are often put in this boat of pill pushing and swapping just to keep the mind numbing pain at bay. Meanwhile (supposedly) well meaning Doctors are squeamish about prescribing the much needed and successful O2. Roll Eyes
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Re: warning to all on preventatives and abortives
Reply #11 - Jul 11th, 2010 at 11:45am
 
JustNotRight wrote on Jul 11th, 2010 at 8:37am:
Unfortunately AO in his posts has pointed to a bit of a problem these days with Dr's even if he did it unintentionally.

Many times I've seen or heard of a Dr. reaching for the prescription pad all to quickly and seeming to forget his pledge to "first do no harm".

They prescribe one pill and when you get an annoying
side affect from it they prescribe another pill to counter act the annoying side affect of the 1st pill. It's a vicious cycle that can go on and on if you don't speak up as a patient to find a "better" alternative to the 1s pill.

I seem to be hearing about this more often in recent years I'm not sure if it's laziness on the doctors part or pharmaceutical co. kick backs or just plain lack of empathy for a patient. Unfortunately as CH sufferers/survivors we are often put in this boat of pill pushing and swapping just to keep the mind numbing pain at bay. Meanwhile (supposedly) well meaning Doctors are squeamish about prescribing the much needed and successful O2. Roll Eyes



Embarrassed
on so very many levels...

And, to you as well, AO.
God bless, and may you find some relief soon...
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Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH
 
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Bob Johnson
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Re: warning to all on preventatives and abortives
Reply #12 - Jul 11th, 2010 at 11:57am
 
I know that you have had a bad run of things with your various treatments--one can't argue with your PERSONAL experience.

But it's not helpful to so many others who are starting to struggle with their own issues to confront such categorical rejection of virtually everything which constitutes the core modes of treatment of CH.

Emotional intensity (I'll never use another man made med...kind of statement) only blocks our ability to use our rational mind.

For readers who are able to wrestle with the compexity of this stuggle, I'd suggest reading the PDF file, below.
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Re: warning to all on preventatives and abortives
Reply #13 - Jul 11th, 2010 at 12:22pm
 
Bob Johnson wrote on Jul 11th, 2010 at 11:57am:
I know that you have had a bad run of things with your various treatments--one can't argue with your PERSONAL experience.

But it's not helpful to so many others who are starting to struggle with their own issues to confront such categorical rejection of virtually everything which constitutes the core modes of treatment of CH.

Emotional intensity (I'll never use another man made med...kind of statement) only blocks our ability to use our rational mind.

For readers who are able to wrestle with the compexity of this stuggle, I'd suggest reading the PDF file, below.


yes.  thank you, bob.
as usual, a bastion of reason...
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Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH
 
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Re: warning to all on preventatives and abortives
Reply #14 - Jul 11th, 2010 at 12:35pm
 
Quote:
imitrex - only 2 a day, causes rebounds prolongs cycles and increases intensity over time


Last I heard, the max imitrex injection dose was supposed to be 3 a day, but if the imitrex tip (link to the left of this page) is followed, then 1/3 to 1/2 doses will be used, which means that 2 syringes a day would become 4 to 6 aborts a day. About the "prolongs cycles and increases intensity over time", I don't believe this has exactly been proven (cycles can prolong and intensify on their own without the aid of imitrex), but it does seem reasonable to be me to be suspicious about this.

Quote:
my worst problem has been the avn from steroid use, this shit seriously sucks


Yes, prednisone is the one drug that really backfired on me - but that was from prolonged high doses, and many folks appear to be able to get away with tapers without severe and/or permamnent side effects. Still the riskiest med of the bunch IMO though.
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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AgentOrange
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Re: warning to all on preventatives and abortives
Reply #15 - Jul 11th, 2010 at 9:44pm
 
Bob P wrote on Jul 11th, 2010 at 7:44am:
Quote:
turns most episodic sufferers chronic like my self

What is your proof of this?


i have no scientific proof but i have found my self and many who use this drug as a preventative starting on low doses, and when it stops working the dose is increased and so on until the amount wich is being takin is outrageous and the fact that if u miss a dose you are bound to have a hit due to the missed dose, there fore becoming dependent on the drug

i used to have 2 cluster periods a year when i was 14 to maybe 17 years old lasting approx 2 months in the spring and fall, then with my increased dosage find my self getting hit all day year round and it has been that way since. i am 24 and cannot say i have had a period of remission or a broken cycle since then. yes verapamil has helped me in the past with the other meds listed but now fail to do so

i obviously have nothin to contribute to this forum any more every one is different in how they react to meds and being as i will not take these "meds" anymore i have nothin left to say, hopefully you all will not experience what i have and you can continue trying to control your headaches with meds designed for other health problems

take my experiences as a precautionary measure if u wish
but as we all know these headaches find there way around the so called treatments and at this point in time the CH will always come forth and show its self no matter what one does

if it works now great! but dont be surprised if it stops working

AO
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AgentOrange
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Re: warning to all on preventatives and abortives
Reply #16 - Jul 11th, 2010 at 9:46pm
 


depending on if you have 4 mg or 6 mg, doctors at the hospital explaijned the max a month is 9 injections of the 6mg kind, no wonder why the ins wont give u more

and the doctors and drug companies get rich off your pain, why would they want to cure CH, it laces their pockets nicely

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« Last Edit: Jul 11th, 2010 at 9:49pm by N/A »  
 
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Re: warning to all on preventatives and abortives
Reply #17 - Jul 12th, 2010 at 8:40am
 
Quote:
i have personally cut out all mainstream meds and find myself better off using alternatives o2 NRG drinks RC seeds and such, ...


Alternatives need guidance with their use also or may not be effective.  Oxygen, as you mentioned is an abortive, with which some experience repeated attacks despite the proper equipment and guiding tips.  The drinks can have the possibility of not being effective enough for this type of severity, and RC seeds may have occasion to have a minimal amount of any LSA to be useful, while HBWR seeds can vary in range greatly in potential content of LSA.   

Point being, proper experienced guidance when using these is required as well, like doctor prescribed meds, and not to be discounted.  Here we tend to give advise from experience to of course help, and long-term use of steroids would certainly elicit input about that. 

I don't think total doctor dependent knowledge is something highly advocated here but these man-made drugs have helped many in years past.  I've seen advise here many times improving a situation using them.

A firmly forward impetus developing a form of LSD for CH can make a total aversion to things man-made seem too general.  It would be very unmeriting of the work that's been done by the people involved, and yet they are drugs, administered by doctors carefully searching to eliminate attending uncertainty.
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Re: warning to all on preventatives and abortives
Reply #18 - Jul 12th, 2010 at 8:53am
 
In general, warning well taken. But...my problem with this post is it is too general. And too anecdotal in its approach. For example:

Quote:
i will neversee a doctor for my CH, they dont know what causes them so how can they help you?


We all understand this level of frustration but I am so thankful there are doctors who dedicate their practice, or a portion of it, to this orphan disease. The best ones seem to understand we are all a community of sufferers and practictioners seeking a cure and releif. Sometimes the temptation to paint with so broad a brush stems from our pain and not from a true picture. Having said all of that, again, warning well taken. Blessings! lance
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Re: warning to all on preventatives and abortives
Reply #19 - Jul 12th, 2010 at 1:22pm
 
Bob Johnson wrote on Jul 11th, 2010 at 11:57am:
I know that you have had a bad run of things with your various treatments--one can't argue with your PERSONAL experience.


True, but I would argue that facing hip replacement surgery due to steroid use may merit a bit stronger categorization than "a bad run of things."

Quote:
But it's not helpful to so many others who are starting to struggle with their own issues to confront such categorical rejection of virtually everything which constitutes the core modes of treatment of CH.


But does this mean that "the core modes of treatment of CH" are the best, or even right modes to treat CH? There are many who would argue that they are not, including more than one neurologist I know.

Quote:
Emotional intensity (I'll never use another man made med...kind of statement) only blocks our ability to use our rational mind.


I agree, but can certainly understand this man's "emotional intensity," and why he has it.

Quote:
For readers who are able to wrestle with the compexity of this stuggle, I'd suggest reading the PDF file, below.


I am attaching a PDF file below too - an article from Neurology (not something that I wrote), titled "Medication-overuse headache in patients with cluster headache." Although it does not definitively settle any arguments about the side effects of various drugs prescribed for CH, it does raise some questions about MOH (Medication-overuse headache).

I am aware of several lives that have been ruined or even almost taken directly because of "core modes of treatment for CH." I myself, have been on 480 mg of verapamil for years, and after numerous tries, have had zero success in tapering off of it.

alley
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Re: warning to all on preventatives and abortives
Reply #20 - Jul 12th, 2010 at 1:40pm
 
Sorry, but the attachment didn't make my previous post.  Hopefully, it will make this one.
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I know that the Good Lord won't put any more on you than you can stand, but sometimes I wish He weren't quite so PROUD of ME!
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Re: warning to all on preventatives and abortives
Reply #21 - Jul 12th, 2010 at 2:02pm
 
Wow. Wonder where he went?
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Re: warning to all on preventatives and abortives
Reply #22 - Jul 14th, 2010 at 12:30am
 
The paper on medication overuse makes interesting reading, although I'm unsure as to how strong the conclusions can be due to a number of factors:

  • The sample size is small, only 17, which makes it hard to get statistically significant results.
  • Since the sample was taken from people attending one of two specialist centres, this need not be a representative sample of all CH suffers.
  • The results section mentions 430 individuals, however there is no mention on how the 17 patients were selected, which makes it hard to tell if the sample was a true representative sample.
  • Of the 17 patients, 10 were chronic and 7 were episodic, which does not reflect the normal distribution where there is normally many more episodic than chronic. This could impact the interpretation of the results.
  • Many of the patients were on inappropriate medication including opiates (10 out of the 17), so the results will not reflect the experience of the population of CH suffers on the correct medication.
  • Less than half the sample were using an effective CH preventative with at least 4 never having received and adequate long-term preventative. Again this will not reflect the experience of the population of CH suffers on an adequate long-term preventative.
  • With the small sample size, along with many patients taking multiple drugs (11 of the 17), it would be very hard to get a statistically significant result for the effects of any single drug.


However it does seem that there may be some correlation between the overuse of some drugs and a change in the observed symptoms. This is strongly dependent upon the definition of overuse since the dose used for CH for some drugs can be significantly higher than when used for other conditions.
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Re: warning to all on preventatives and abortives
Reply #23 - Jul 14th, 2010 at 6:24am
 
This is a VERY interesting thread.

16 weeks into my current episode here. For acute attacks, the new love of my life is oxygen! Prednisone cut back the number of CH the first few days, but the side effects were horrible! Verapamil -- I don't know what long term good it will do, but it now serves as my blood pressure medication so might potentially be doing double duty.

Still, the cycle has not broken. I saw my Dr. yesterday for about the fourth time this month. He tends to be very prepared for our visits. It took some convincing on my part to try oxygen, but he has now recommended it to one or two other CH sufferers in his practice. Yesterday, knowing that the abortives (Oxygen, sumitriptan (only if REALLY needed), RED BULL), killed many/most of the CH, he had information ready regarding additional preventatives: Lithium or topiramate (Topamax). After discussing the pros and cons of each, I'm reluctantly going to try topiramate -- I'm especially worried about the cognitive/memory issues.

But then, up at 3:00 am with a CH AGAIN this morning, I'm willing to try something else....

AO, don't leave us! I was going to start a Topomax thread this morning and you did it for me!

Jim
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Re: warning to all on preventatives and abortives
Reply #24 - Jul 14th, 2010 at 8:02am
 
Quote:
Jim wrote:
After discussing the pros and cons of each, I'm reluctantly going to try topiramate -- I'm especially worried about the cognitive/memory issues. 

But then, up at 3:00 am with a CH AGAIN this morning, I'm willing to try something else....


I completely understand your willingness to try something, anything, that will bring an end to this crap. I tried topamirate for some time (over 6 months) and it had no impact but many others find it does help them. The up side is it's one of the few meds which assist weight loss. If this is a good thing for you, take it is an added benefit, if not, be prepared for a diet infusion. Hope this helps. Blessings! lance
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