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ClusterChuck

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Full disclosure on preventatives
Sep 2^nd, 2008 at 1:14am

Pubgirl and I have been PM'ing back and forth on this subject, that we both feel needs to be emphasized.

When a newbie comes in here, we welcome them in (as we should) and most of the time start on the pushing of drugs for preventatives. We also push the oxygen, imitrex, and red bull treatments for abortives.

This is all good, but Pubgirl and I don't think we give ENOUGH information (and YES, I am VERY guilty of this). We talk of (say) verapamil, but we normally do not point out the possible down side to the preventatives: Possibly lengthening the cycle; more severe hits; and some doctors think it is even possible to go chronic from the overuse, or long time use of preventatives. (I am not sure I agree with the last one, but I know some doctors do feel it is possible)

We also do not spend enough time explaining the choice to go preventative free, and how to deal with clusters using just abortives.

Many of us go on without any preventatives, at all, for various reasons. My personal reason is that none of them were making a substantial difference, anymore, so why put all those drugs into my system? Everyone who does go preventative free, has their own reasons, and that is fine. But, each of us that choose to do so, do so with the knowledge to make that descision.

Now, I am not saying anything bad about verapamil, as it got me through many years, pain free, and I don't regret taking it. Did it make me chronic? Who knows. We will never know the answer to that question. All I know, is that when I needed to be pain free, for my family and work, I was able to go that route. Would I go back on it, if it started working again? Probably. Even with all the possible side effects, I would most likely choose to go that route.

BUT, it would be MY choice, WITH full information and knowledge of the risks.

All I am saying (and Wendy, too) is to give the full story about possible down sides to taking the drugs, beyond what is written on the product information sheet. With all the info, from us that have experience and years with dealing with it, they can then make up their OWN mind as to what route to go.

And none of us can condemn them for making an informed decision. They just need the information, in order to make that choice!

Anyhow, it is something to thing about.

Comments or ideas?

(Like I have to ask for them from this group! LOL!)

Chuck (and indirectly Pubgirl)

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pubgirl

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Re: Full disclosure on preventatives
Reply #1 - Sep 2^nd, 2008 at 4:42am

As you gathered, I agree with everything Chuck says and he says it so very clearly, a great post!

Prevents are an OPTION you can decide not to use, and there MAY be long term benefits if you choose not to or can manage without.

a few other things to add from Chuck and my "conversation":

Prevents for Episodics

Todd Rosen- one of the USA CH experts certainly used to advocate that any episode of CH lasting more than 2 weeks should be treated with prevents. A lot of Doctors still seem to think this is good advice, and some even give Verapamil as soon as there is a diagnosis and keep people on it for years without review or suitable tests to check its effects.
In my view this is downright wrong and possibly dangerous. If you can abort your attacks and your cycles are short, you may be able to deal with them almost entirely with 02 which surely has to be worth trying.

Giving Treatment advice

It is up to posters on here to take responsibility for their own condition and treatment and not just accept what they are told but it is ALSO the responsibility of those giving advice to bear in mind that just because the person posting says they have CH doesn't mean they do! CH is still being misdiagnosed constantly by Doctors AND even neuros. There are several headache conditions which mimic CH and are actually incredibly easy to treat with very safe drugs. I would ask that you bear this in mind before immediately sending new posters down the 02, triptan, prevent route.

Verap and Steroid Dosing

These are still both being dosed wrongly by a lot of doctors who are then escalating prevent treatment to Lithium and beyond. If Verap or Prednisone are dosed wrongly they don't work at all, and both can be dangerous if they are dosed wrongly or for too long. It is really worth checking what the poster is being given and how as the solution could be very simple (Oh and don't forget the ECG'S!!!!!!!!!!)

Shutting up now and getting back in my box

Looking forward to being disagreed with!!!! Cheesy

W the B

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gizmo CH.com Hall of Famer Offline Posts: 522 Germany Gender:	Re: Full disclosure on preventatives Reply #2 - Sep 2^nd, 2008 at 5:30am Thanks Wendy and Chuck!!!
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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: Full disclosure on preventatives Reply #3 - Sep 2^nd, 2008 at 9:33am Good points, well made. Thank you both. Best, George
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n_lighty37 CH.com Junior Offline Opportunity knocked, my doorman kicked him out. Posts: 30	Re: Full disclosure on preventatives Reply #4 - Sep 2^nd, 2008 at 10:25am I agree... the more info the better.... um... You have both mentioned some of the down sides of prevents and verap/predni. I am currently on a predni taper and 480mg of verap daily. What ARE some of the risks I might not already know about??
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Bob Johnson

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Re: Full disclosure on preventatives
Reply #5 - Sep 2^nd, 2008 at 10:38am

There is a crucial difference between education and advocacy. What you are proposing is advocacy, a position which immediately calls your information into question. Advocacy always raises the question: is there some slippage of the evidence or weighting of the supporting data? When your goal is to inform, you offer the material and let the person work through to a decision (in unavoidable collaboration with their doctor).

This is an especially critical issue when: 1. they may not know whether they have CH; 2. they may not have a physician treating them; 3. we are not in an ethical position to either make the diagnosis or prescribe the treatment.

Even if they have a physician on board, it’s really counterproductive to walk into the office, demanding particular treatments. It’s appropriate to suggest they have a list of standard treatments for CH and use it to discuss options with the doc but just because they are the bearer of the disorder does not make them the expert in the treatment. We all, especially if starting a new relationship with an unknown physician, need to start out with appropriate respect for them/their skills & authority, and then start focusing the planning by the questions we ask, by pointing to the authority of a medical article we have, etc.

The newcomer who has no experience in medicine or with CH is not in a position—intellectually or emotionally—to make complex judgments. They need some grounding in what is going on, support in not feeling helpless and, therefore, fearful, and some basic information to help them just get settled. This is why I’m inclined to either refer a new person to Robbins book or one of a couple of brief articles which give the basics. Only when this material has been digested are they in a position to ask specific questions.

We are all aware of how many people have aligned with a doc who is not competent and then we shift the focus to the need and the how to of locating a good doc. Not until they feel satisfied with their doctor is the question of how to treat ready to be discussed.

I’m not being critical of your goals but do encourage you to not let your good intentions be pushed too hard. (A good many of us quickly duck the question, “Are you saved?” Understand?)

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Bob Johnson

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pubgirl

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Re: Full disclosure on preventatives
Reply #6 - Sep 2^nd, 2008 at 11:40am

I see your point Bob although I think advocacy happens more when people repeatedly suggest the same treatment to all comers, regardless of their circumstances and without any attempt to understand or ask questions.

What we are attempting to say is the opposite- don't advocate standard aborts and prevents as a knee jerk answer to a new poster. I recognise that this has then tipped into advocating seriously questioning what the doctors are telling you to take, but I can live with that kind of advocacy.

In the ideal world I would love it if we could just understand and educate, and I do try to do both as much as I can but this board is not just an intellectual exercise or debating forum- people need practical help from people who understand, and that inevitably means more than just education

Another huge problem with just educating is that there is no one, two, or even three places you can refer a person to which gives them a reasonably rounded picture, some people hate to read articles (hence one of the reasons why I posted the video links today) and some information isn't contained in readable articles anywhere at all. This can often be the really valuable stuff gained from sufferers experiences.

Possible solution to the dilemma?
Perhaps what we should have is piece on CH and its possible treatments written by someone here which combines the best of Goadsby et al, updated with new and also practical information which GP's don't have so we can refer people to that at the first instance??

I don't have the answer to this problem- I wish I did, I just know that we can do better

Wenndy

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pattik

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Re: Full disclosure on preventatives
Reply #7 - Sep 2^nd, 2008 at 11:59am

pubgirl wrote on Sep 2^nd, 2008 at 11:40am:

I don't have the answer to this problem- I wish I did, I just know that we can do better

Wenndy

Most of what you're suggesting has and is being done here (just need to refer to it more often)
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Pat

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pubgirl

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Re: Full disclosure on preventatives
Reply #8 - Sep 2^nd, 2008 at 12:04pm

n_lighty37 wrote on Sep 2^nd, 2008 at 10:25am:

I agree... the more info the better....

um...

You have both mentioned some of the down sides of prevents and verap/predni. I am currently on a predni taper and 480mg of verap daily. What ARE some of the risks I might not already know about??

There are risks with any drug of course but the main Pred risk is if the course is too long and not tapered off. I am afraid it is a long list of possible side effects with prolonged use of corticosteroids but it should only be a short course used for CH'ers to "break" a cycle so any risks are minimised.

r.e. Verapamil has side effects for some (detailed on here quite frequently on other threads e.g. constipation and nausea) but the main risks are cardiovascular if the person has not been checked before being given the drug and has an additional condition beyond their CH. What is usually forgotten by GP's is that an ECG should be done before the Verap is given, and then done again after every dosage increase to check what effect the Verap is having on the person's heart.

Hope this helps -almost all drug side effect lists are scary, but the drugs you are taking are no more scary than most if prescribed and used properly

W

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n_lighty37 CH.com Junior Offline Opportunity knocked, my doorman kicked him out. Posts: 30	Re: Full disclosure on preventatives Reply #9 - Sep 2^nd, 2008 at 12:11pm thanks
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pubgirl

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Re: Full disclosure on preventatives
Reply #10 - Sep 2^nd, 2008 at 12:16pm

pattik wrote on Sep 2^nd, 2008 at 11:59am:

pubgirl wrote on Sep 2^nd, 2008 at 11:40am:

I don't have the answer to this problem- I wish I did, I just know that we can do better

Wenndy

Most of what you're suggesting has and is being done here (just need to refer to it more often)
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Pat

Pat

Doesn't that just underline the main point in Chuck's post about Prevents- it educates how to take them but no mention of whether to??

W

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thebbz

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Re: Full disclosure on preventatives
Reply #11 - Sep 2^nd, 2008 at 12:19pm

Quote:

When a newbie comes in here, we welcome them in (as we should) and most of the time start on the pushing of drugs for preventatives. We also push the oxygen, imitrex, and red bull treatments for abortives.

This is all good, but Pubgirl and I don't think we give ENOUGH information (and YES, I am VERY guilty of this). We talk of (say) verapamil, but we normally do not point out the possible down side to the preventatives: Possibly lengthening the cycle; more severe hits; and some doctors think it is even possible to go chronic from the overuse, or long time use of preventatives. (I am not sure I agree with the last one, but I know some doctors do feel it is possible)

We also do not spend enough time explaining the choice to go preventative free, and how to deal with clusters using just abortives.

Many of us go on without any preventatives, at all, for various reasons. My personal reason is that none of them were making a substantial difference, anymore, so why put all those drugs into my system? Everyone who does go preventative free, has their own reasons, and that is fine. But, each of us that choose to do so, do so with the knowledge to make that decision.

Knowledge is key. There is a disclaimer on the front door, anyone who chooses to alter their treatment, based on a message board suggestion without checking in with the doc is not being rational.
I did not have a clue about my condition and the treatment until I read here for sometime. I try to provide links to enhance information given or reiterate the disclaimer to avoid confusion. It does concern me that I give all the relevant information to avoid a wreck. I don't always get that done. I try to push information and let nature take it's course. We all have information and experience, that should be put out there and discussed.
Good post, reminds me to be more detailed with the information I provide.
all the best
thebb

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Ernie Moss aka Wishbone

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Re: Full disclosure on preventatives
Reply #12 - Sep 2^nd, 2008 at 2:15pm

As much as it kills me and I mean kill me I have to applaud Chuck Angry

for the post. I came to CH back in 06, but really didn't post any until after attending this years O.U.C.H. Convention. I am on several meds which I have posted probably several times so I won't here, but am them from neuro and not from CH. Unless I am going crazy in cycle and go in before I see him every 6 mos. for update and adjustment of meds. In the past I have tried to wean myself from the meds (taking each one separately) but time after a week or so I get hit. So I feel the preventative meds are doing some good. However, even with that belief I am going to try and wean myself off the meds again. I do get check ups for the possible side affects, etc. and everything has checked out okay, but none the less I want to get preventative med free if possible. Not saying I can do it but that is my goal. Chuck see if you can reach those long belts behing your arms and pull them real tight, I think you will be more comfortable that way.

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BMoneeTheMoneeMan

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Re: Full disclosure on preventatives
Reply #13 - Sep 2^nd, 2008 at 2:20pm

I agree. Medications can be very harmful, even if taken as directed. That is why they are controlled substances that require the prescription of a medical doctor.

We are not advocating or pushing anything. We do not tell people to take medications, we suggest medications for them to discuss with their doctor. I don't see it as 'us telling people what to do'. I see it as 'us helping people to help themselves'.

This site helped me help myself. I can not take verap and I wish not to take pred or topomax as directed by my neuro.

It's up to us to help ourselves.

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pubgirl CH.com Hall of Famer Offline The next person who calls it a migraine eats teeth Posts: 693 x0\|London\|United_Kingdom\|\|0\|0\| Gender:	Re: Full disclosure on preventatives Reply #14 - Sep 2^nd, 2008 at 3:20pm BMoneeTheMoneeMan wrote on Sep 2^nd, 2008 at 2:20pm: We are not advocating or pushing anything. We do not tell people to take medications, You may not, but some do
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ClusterChuck

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Re: Full disclosure on preventatives
Reply #15 - Sep 3^rd, 2008 at 7:00pm

BMoneeTheMoneeMan wrote on Sep 2^nd, 2008 at 2:20pm:

It's up to us to help ourselves.

THAT is exactly what I want people to do! Don't do it just because the doctor said so, or some one here said to.

Do it because you have all the information, and you feel it is right or wrong for YOU!

Thanks, Brian, your comment is what this thread is actually aimed at. Us giving the full information, and choices so that each can help themselves!

Chuck

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danielpeterson

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Re: Full disclosure on preventatives
Reply #16 - Sep 4^th, 2008 at 10:33am

Let me pop up here and relate sometning I found in Consumer Reports magazine: as you may know health is such a big market now they have a newsletter on health issues only. The MD, Orly Avitzur, says medicine has defined a condition called medication-overuse headache. She got her patient to get off "caffeine and all her pain medications," eat a more healthful diet and exercise at a gym --and the patient has been headache free for three months.
Three months isn"t long in the great scheme of things but I like to question everything, and questioning medications is big with me. And looking to alternatives is even bigger. I certainly have eaten well and exercised for decades but recently I found that Qigong, a health exercise from China that is thousands of years old, has a system of scraping off "bad energy," or chi forces during the routines. The Spaniard's system pushes off energies... (And energy, in new-fangled quantum physics, is theorized to underlay every thing.)

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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: Full disclosure on preventatives Reply #17 - Sep 5^th, 2008 at 8:30am I see the merit in this thread. So yesterday I took a shot at a more balanced response to a Newbie. Now I'm looking for some feedback. Is this more in line with what you are looking for? Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or -Dennis-
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pubgirl CH.com Hall of Famer Offline The next person who calls it a migraine eats teeth Posts: 693 x0\|London\|United_Kingdom\|\|0\|0\| Gender:	Re: Full disclosure on preventatives Reply #18 - Sep 5^th, 2008 at 9:43am I like that. It gives them the idea what prescription drugs they can take, but also that that may not always be the best option W
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ClusterChuck CH.com Alumnus Offline The BEAST rises again, and again, and again, and . Posts: 5394 Greenville, North Carolina Gender:	Re: Full disclosure on preventatives Reply #19 - Sep 5^th, 2008 at 10:12am Yup, Dennis, I saw that! I was impressed! THAT is what we need to do! Good job! (But, remember: It takes ten "Atta-boys" to get rid of one "Ah, SHIT") Chuck
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Pixie-elf CH.com Hall of Famer Offline I've tried the rest, and busting is the best! Posts: 517 Beaumont,Tx Gender:	Re: Full disclosure on preventatives Reply #20 - Sep 5^th, 2008 at 3:24pm Too numbdrumb to read the full links, but one warning that needs to be included is, if you have complicated migraines, you are not eligable for Triptans, or, for Ergots. Either can kill you/put you in a coma / cause a stroke. I was also told that with small vessel disease of the brain you are not to use either.
Back to top	As far as I'm concerned, cluster busting has been the best treatment I've tried. No migraines since I started it, and my hits have gotten so much better. Wanna know more? Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or It's saved my life. IP Logged

pubgirl

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Re: Full disclosure on preventatives
Reply #21 - Sep 5^th, 2008 at 5:07pm

Pixie-elf wrote on Sep 5^th, 2008 at 3:24pm:

Too numbdrumb to read the full links, but one warning that needs to be included is, if you have complicated migraines, you are not eligable for Triptans, or, for Ergots. Either can kill you/put you in a coma / cause a stroke. I was also told that with small vessel disease of the brain you are not to use either.

I think you mean Basilar Artery Migraine (BAM) - a rare migraine variant where the pain is located at the base of the skull at the back. Triptans can be lethal to someone who has this as you suggest and it is a good warning.

I am not sure though, but don't think it is really practical to list all the conditions where sufferers can't use the various CH drugs as there are lots of them (maybe a reference list somewhere is practical??) but being aware that if someone posts here with a migraine pain at the base of the skull they should be warned that BAM is a possibility is a bloody good idea.

I watch for what you mention on posts though as although it is unlikely that BAM would be confused with CH as the symptoms are SO different I do know someone who has CH and BAM so can't use triptans

Wendy

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Pixie-elf

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Re: Full disclosure on preventatives
Reply #22 - Sep 7^th, 2008 at 1:49am

pubgirl wrote on Sep 5^th, 2008 at 5:07pm:

Pixie-elf wrote on Sep 5^th, 2008 at 3:24pm:

Too numbdrumb to read the full links, but one warning that needs to be included is, if you have complicated migraines, you are not eligable for Triptans, or, for Ergots. Either can kill you/put you in a coma / cause a stroke. I was also told that with small vessel disease of the brain you are not to use either.

I think you mean Basilar Artery Migraine (BAM) - a rare migraine variant where the pain is located at the base of the skull at the back. Triptans can be lethal to someone who has this as you suggest and it is a good warning.

I am not sure though, but don't think it is really practical to list all the conditions where sufferers can't use the various CH drugs as there are lots of them (maybe a reference list somewhere is practical??) but being aware that if someone posts here with a migraine pain at the base of the skull they should be warned that BAM is a possibility is a bloody good idea.

I watch for what you mention on posts though as although it is unlikely that BAM would be confused with CH as the symptoms are SO different I do know someone who has CH and BAM so can't use triptans

Wendy

I do think it'd be good to list it someplace, and I forgot, complicated migraine is the umbrella term for migraine variants. I'm used to hearing it referred to as that more commonly than BAM by doctors. ^^;

The reason I suggest it is because it would help people eliminate things to ask about trying. I myself didn't know about the Ergot contraidiction, so I wound up with a few extra questions to ask the neurologist that weren't needed. That and if you have a condition that is serious and end up having to go to the ER during a cluster, it's best to know what they can't treat you with ahead of time. It may not be appropriate for the newbie guide, but it's something that may prove useful to them.

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As far as I'm concerned, cluster busting has been the best treatment I've tried. No migraines since I started it, and my hits have gotten so much better. Wanna know more?
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Jonny Ex Member	Re: Full disclosure on preventatives Reply #23 - Sep 7^th, 2008 at 2:39am It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain. - Guiseppi
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wayne mc

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Re: Full disclosure on preventatives
Reply #24 - Sep 7^th, 2008 at 8:48am

you guys are doing a fantastic job, as a newby, to this site but not CH
your experience is invaluable to me, I have tried dozens of meds and some made me feel awful, some made the CH worse, but something as simple as drinking energy drinks has given me 2 nights nearly 3 nights sleep. Although the shadows are fairly strong. I think that people should take your advise for what it is Experience. If you read a couple of posts it dos'nt take long to realise that everybody is different.
Energy drinks may not help all the time but 2 nights is 2 nights

Thanks heaps

Wayne

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If I knew I would live this long, I would of looked after myself better!

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