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

Well said.

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.

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

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

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?

don't bother. i found it.

Shades of Ali

feeling silly, poor coordination, slow, equalibrium off, unbalanced

Quote:

turns most episodic sufferers chronic like my self

What is your proof of this?

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.   ::)

JustNotRight wrote on Jul 11^th, 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.   ::)

:-[
on so very many levels...

And, to you as well, AO.
God bless, and may you find some relief soon...

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.

---

Bob Johnson wrote on Jul 11^th, 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...

wrote on Jul 10^th, 2010 at 7:09pm:

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.


wrote on Jul 10^th, 2010 at 7:09pm:

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.

Bob P wrote on Jul 11^th, 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

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

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.

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

Bob Johnson wrote on Jul 11^th, 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

Sorry, but the attachment didn't make my previous post.  Hopefully, it will make this one.

---

Wow. Wonder where he went?

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.

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

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

I'm on Topomax and it's ok. Takes awhile to build up so don't
expect it to work over night so to speak.  May take weeks to
get on a level strong enough to help.  Good Luck!

Can always stop them if you don't like them.

I think the key point in all of this is to get educated on whatever treatment you are using so you can make decisions based upon what is best for you and also to know what is happening if you start getting side effects.

I just read where someone had been on 85mg of prednisone for 5 months straight. I would not want to experience the detox from that.

I also spoke to someone that had been addicted to oxy (all prescribed) from long standing migraine treatment. During her detox from the oxy, she was prescribed 7 different meds to treat the migraines as a replacement for the oxy.
Not only do the migraines continue, but she couldn't figure out why she still had slurred speech and bad memory loss. one of the drugs she was prescribed....400mg of Topimax.

Her doctor had told her ZERO on possible side effects on any of the 7 drugs se had been prescribed. (at least she didn't remember ever being told any side effects)

So...everyone tries to do the best they can....including the docs.
The responsibility is on the patient to know what they are putting into their bodies and how it is effecting them. With the Internet, it's not that difficult.
Most people are are multiple meds to treat their clusters. Even the PDR the doctor might read on the meds you are on, the PDR does not say how YOU will react to a 5 or 7 medication cocktail.

People will read the side of a Wheaties box but not what's in one of those little pills. We've all been brought up to trust our doctors. The FDA wouldn't approve it if it wasn't safe and my doctor certainly wouldn't prescribe it if it wasn't safe.

Be careful
Be smart
Be your own best advocate

Bob

When I saw my neurologist, as she was writing the proscription, she said to always read up on whatever drugs any doctor proscribed. After all it's your body that you're putting the drugs into and it is you who will be impacted by any side effects, etc.

And if you get side effects, knowing what the potential side effects are will help you identify them early and make the appropriate changes in consultation with your doctor.

As with anything, knowledge is power.

Pinkfloyd wrote on Jul 15^th, 2010 at 12:46am:

I think the key point in all of this is to get educated on whatever treatment you are using so you can make decisions based upon what is best for you and also to know what is happening if you start getting side effects. So...everyone tries to do the best they can....including the docs. The responsibility is on the patient to know what they are putting into their bodies and how it is effecting them. With the Internet, it's not that difficult. Most people are are multiple meds to treat their clusters. Even the PDR the doctor might read on the meds you are on, the PDR does not say how YOU will react to a 5 or 7 medication cocktail. People will read the side of a Wheaties box but not what's in one of those little pills. We've all been brought up to trust our doctors. The FDA wouldn't approve it if it wasn't safe and my doctor certainly wouldn't prescribe it if it wasn't safe. Be careful Be smart Be your own best advocate Bob

Well said Bob It's worth repeating.

We have tried some of these meds and other treatments as well, here is our experience with them:

Verapamil - low heart rate also, also becomes dependent on the drug, and do believe it turned from episodic to chronic. No real relief noticed either, considered unsuccessful.

lithium - feeling of loopyness, mood swings (after all, it is used to treat bipolar cases too). No real relief noticed either, considered unsuccessful.

Sumitriptan Injections (6mg) (Nerve tranquilizer) - only 2 a day, causes rebounds prolongs cycles and increases intensity over time.  Nerve tranquilizer therefore wipes you out for the rest of the day.  Sometimes followed by nausea.  Did get relief quite quickly from this one, at least temporary relief until the next day.
There is a new needleless form of this injection that uses a CO2 cartridge to basically force the liquid through the skin and it disperses into the blood stream.  These are EXTREMELY painful (I prefer a needle), the first one I took caught me off guard and went off with pretty good force, causing it to push away from my skin and none of the medicine went in.  Also had the glass part at the tip bust and stick into my skin in one case.

Predisone (pill-form steriods basically)- works great at the beginning, especially when started with a "booster" steroid shot from physician, but will find one's self needing more and more and longer usage to keep of CH, also causes irreversible side effects such as vision impairment when used for long periods of time, causes acne, hair growth in "new" places where hair wasn't present before, causes extremely high levels of testosterone release, followed by very low, causing both mental, emotional and sexual side effects.

Medrol Dose Pack (also a steroid) - Same side effects for the most part as prednisone.  Also taken with an injection of a more powerful and short term steroid administered by a physician.  Used to get steriods into system faster for quicker relief giving the pill form of the steroids time to take effect.

High-flow Oxygen - Occational relief if started use at first sign of headache, didn't work if started at moderate or peak times of pain.  Needed to carry oxygen tank EVERYWHERE we went just in case a headache came on, not only a pain in the you-know-what to transport constantly, but also quite embarrassing for a 33 year-old smoker if seen in public.

Migranol Nasal Spray - First of all, VERY expensive, effective most of the time for relief at time of onset, but no long-term relief.  Causes some nasal side effects such as dry nasal cavity, runny nose and nausea/drowsiness.  Can also cause the "drips" in the back of your throat inducing the gag reflex and causing vomitting.

Chiropractic treatment - currently undergoing treatment 3 times per week doing adjustments in neck and spine, also a physical therapy type program that stretches muscles in neck.  Haven't noticed any improvement with the CHs, but not a bad idea to get everything aligned properly either.  Have experienced some cases where it seemed that the appointment would cause the onset of a CH immediately following the session.

Next treatment that is being considered: acupuncture.  Far-fetched, I know, but we are desperate and exploring all avenues right now.  Have read posts that claim it works wonders.  If no relief from the acupuncture, it may be time for the last resort, deep brain stimulation surgery.  But hoping to find a cheaper, less invasive treatment before that is done.

Hey Dying

How much Verap? Don't feel dependent, will need to come off
slowly if that's what you mean but it seams to help with
verap and topomax. 


Imitrex comes in vials and you can stretch it out, I get 6-8
doses from 2 vials.  Don't feel nearly as wiped as if I would
trying to deal with a few hrs of pain.  :D

omaha...sorry I missed you. I was just there Saturday visiting my daughter. With due respect, I suggest that you commit to a lifestyle change and develop a plan for attacking CH. The pain is severe enough for most of us to be inconvenienced whether it be quit smoking of lugging around an O2 tank. O2 will abort a HA 90% of the time, but you have to be committed to it and follow procedures decribed herein carefully. Complain all you want that nothing works, but things do work and there is no need for a CH sufferer to suffer! Read about O2 here and then visit clusterbusters.com for alternative treatments. Then do what you want, but to others out there reading...THERE ARE SOLUTIONS THAT WILL ELIMINATE YOUR PAIN...

Dying in Omaha said:
"Next treatment that is being considered: acupuncture.  Far-fetched, I know, but we are desperate and exploring all avenues right now.  Have read posts that claim it works wonders.  If no relief from the acupuncture, it may be time for the last resort, deep brain stimulation surgery.  But hoping to find a cheaper, less invasive treatment before that is done."



Have you considered busting your CH?

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Jim, if you are willing to try something else. Visit chusterbusters.com. Alternatives discussedthat have had great postitive results.

This thread was heartbreaking for me to read, and I hope very much that AO will come back and maybe reconsider leaving the boards. 

The fact is that side effects can and do happen.  Not every person will experience every side effect and there is sadly no way to predict who will receive each one.  You can read all the labels and product information you want, but it still leaves you with the ultimate very difficult decision of weighing risks and benefits without fully understanding which side effects are the worst to worry over and which ones could be more likely than others.  Also, the desire for pain relief from CH is going to outweigh for many the remote possibility of getting some rare side effect.  For me, having AVN from years of steroid use, I've agonized over this at length.  Had someone actually told me that steroids could potentially cause AVN but the risk was small, I'm not sure it would have stopped me.

I think where this needs to come in is in physician guidance regarding side effects.  People should be told about AVN as a potential problem from steroids, but then told what to look for and what the patient and doctor can do together to make sure they head this off or at least catch it extremely early if it does happen.  And stepping away from the specificity of that example, for all medications - it is important for patients to be advised by their doctors for what things to look for, and then their doctors to be receptive to the patient calling in about negative effects.  Proper monitoring of side effects is a big deal.  Not doing so is poor.  And then not acknowledging the suffering that your patient has gone through (even if you don't take on personal responsibility for something that comes as a result of a medication side effect, but still at least say "I'm very sorry that happened to you - here is what we are going to do now")...  It all makes a difference and I think people who have good relationships with their physicians can get through even experiencing some catastrophic side effects.

I wouldn't ever recommend to anyone to bow off of all prescribed treatments, but it is an individual decision and one that should be in open conjunction with a good doctor that you feel you can trust.  What I took away from this was that AO felt abandoned by his doctor, and that is very sad indeed.  Weigh the risks and benefits of everything you do - and while it is true it is only you that can decide what you will put in your own body - there is no crystal ball that will tell us who will get which side effect.  Careful monitoring after starting new medications with awareness of potential is paramount.

PF wishes to all,
Carrie