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MITYRARE

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Preventers and search
Dec 5^th, 2008 at 10:22am

I am bringing this forward from another thread where i picked up a point mentioned, that being on preventers extends the length of a cluster cycle. This was of interest to me as i have wondered before if this might the case with me as i appear over time to be heading towards chronic status.
When I replied as to whether this was a fact or just heresay this was the response i received

Paul-

From everything I've read many of the prevents as wendy has said , with verap being one, are thought to lengthen the cycle. There has been numerous posts on this board about this very topic. If you go up to the top and search the boards , I think you'll find some pretty interesting information about this... Happy reading

Kelly

I then spent considerable time searching "extending cycle", "preventers extend" and many other variations on this theme and came up empty handed. Obviously my research skills are inadequate.

So I created this thread for any comments or input, persoanl observation, or any hard data that anyone may have, or for anyone able to search and bring forth any relevant info for me. Perhaps Kelly will see this and help add some of the "pretty interesting information about this" that some of us newbies might like to have access to.
Thank you
Paul

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« Last Edit: Dec 5^th, 2008 at 10:25am by MITYRARE »

Paul
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Marc Ex Member Gender:	Re: Preventers and search Reply #1 - Dec 5^th, 2008 at 11:00am Removed my post - it didn't offer direct experience
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MrsT

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Re: Preventers and search
Reply #2 - Dec 5^th, 2008 at 11:29am

Glad you started a new thread. As posted in the other thread, my personal observation is inconclusive just because the current cycle has been dragging way longer than the previous ones. Took Verapamil for 2 months in high cycle.

My previous "normal" cycles made no difference with or without Verapamil. About 12 weeks in the summer, 8-10 weeks in the winter.

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Guiseppi

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Re: Preventers and search
Reply #3 - Dec 5^th, 2008 at 12:58pm

I've used verapamil as a prevent early on, wasn't effective, I now realize my dose was way low. Have been using lithium as my primary prevent for the last 15 years or so. It hasn't seemed to have had an effect on length of cycle. (I'm episodic, 30 years)

Imitrex......this is the one I'm concerned with. But I've only used it one cycle. That cycle went over 8 months, first time I'd ever gone longer then 4 months, with the average cycle being 3 months.

Does one cycle qualify as a decent sample? Definitely one of the hardest facets of this condition is its constant morphing. You're never positive it was a change you made vs. the beast morphing again!

I will follow this thread very closely, great idea starting it.

Guiseppi

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pubgirl

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Re: Preventers and search
Reply #4 - Dec 5^th, 2008 at 1:14pm

As I said on the previous thread (and on ones before that) there is no formal research that I have seen, and I'm not sure how conclusive research could ever be as there is no "norm" group to compare with as neither ECH or CCH have fixed patterns or are vaguely predictable but for what it is worth:

- All of the CCH sufferers I personally know or have talked to truly believe that long term use of prevents was a big factor in them turning chronic

- All of my CCH friends say if they could turn the clock back, they would try and manage by aborting with 02 only and not prevent

- No-one I know (including myself) who has avoided prevents has progressed to chronic

- Professor Goadsby had always advocated Verapamil "holidays" anyway as part of his treatment regime as he did not feel long term use without a break was healthy

BUT IN ADDITION

- When he was challenged to give his opinion about the effect of prevents on CH and specificially if he felt that long term prevent use may worsen the condition- he said "Probably" which I think is the nearest he could say to "Yes" without formal evidence.

- He was then asked if he felt that the same could be said of triptan use, and again he said "probably"

This is why my personal philisophy is to hang in as tough as I can using 02 only, with triptans as back-up when desperate. I am one of the very lucky ones who can do this I know

W

Modified to add you will find Chuck's thread on this on Page 5 of the Medications section - the thread title is "Full disclosure on preventatives" (too numpty to link to it and it did get rather out of hand between individuals and off topic as some threads do) There is a lot of good sense amongst the argument though

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« Last Edit: Dec 5^th, 2008 at 1:23pm by pubgirl »

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billyjoe

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Re: Preventers and search
Reply #5 - Dec 5^th, 2008 at 1:32pm

Just for personal experience, I never had an 8 month cycle and turned chronic (I think) until my last cycle when I used many preventatives and Imitrex every night. I was putting the blame on Imitrex until I read this post, now I'm not sure that was the only culprit. Knock on wood, I haven't had to use Imitrex this high cycle (yet).

Not sure if it is related, but this cycle has been my easiest in a long time. Perhaps the seeds have knocked it down a bit, but I have not used many preventatives yet. However, I am about to give Lithium a try for a bit, but a part of me wants to tough it out and hope for a short cycle. The other part of me like to sleep

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Skyhawk5

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Re: Preventers and search
Reply #6 - Dec 5^th, 2008 at 8:32pm

I have been on Verapamil 480mgs./dy. for the last 18 years and remain Episodic. Also have been on Lithium 600mgs./dy for 15 years. Maybe I'm just outside the normal, but at this point I would be afraid to change it.

I certainly feel for all who have gone Chronic but I am an example of maybe it's not the meds.?? But I do have long cycles up to 6 months. Also I was Chronic the first 28 months I had CH. Unusual case?

Best to All, Don

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pubgirl

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Re: Preventers and search
Reply #7 - Dec 6^th, 2008 at 2:48am

Skyhawk5 wrote on Dec 5^th, 2008 at 8:32pm:

I have been on Verapamil 480mgs./dy. for the last 18 years and remain Episodic. Also have been on Lithium 600mgs./dy for 15 years. Maybe I'm just outside the normal, but at this point I would be afraid to change it.

I certainly feel for all who have gone Chronic but I am an example of maybe it's not the meds.?? But I do have long cycles up to 6 months. Also I was Chronic the first 28 months I had CH. Unusual case?

Best to All, Don

Don

I'm confused- genuinely. It is probably because I understand the theory of prevents and how they are dosed but I have never taken them.

If I have this right, you have 6 month cycles but are taking Verapamil and Lithium?

Does this mean that you are taking prevents because you think or know or are scared you would be chronic if you didn't take them?

Wendy

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mezza CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 415 north carolina Gender:	Re: Preventers and search Reply #8 - Dec 6^th, 2008 at 7:15am Paul Just saw this now. For the search - try verapamil extends cycles. I came up with hits... also look at the thread that wendy pointed out to you started by Chuck. Kelly
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BarbaraD

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Re: Preventers and search
Reply #9 - Dec 6^th, 2008 at 7:17am

When I was episodic I took prevents and aborts during the cycle (usually 2 months) and then nothing in remission, but the cycles still hit twice a year.

Since going chronic in 97, I got on topamax in 99 (after two years of HELL) and got them under control. Right now I'm on a very low dose of topamax and haven't used aborts since August -- O2 (high flow rate) only and it's great.

I'm hoping the O2 therapy is working so I'll be able to stop all prevents and aborts and just use it. My neuro is watching this closely also.

I can't say if the prevents or aborts cause prolonged headaches, but O2 has been the saviour for me. Pete has tried to explain it to me that on a high flow rate it builds up something like muscle tone in your arteries and stops so many headaches from hitting. Of course I don't understand all that, but I just know I'm not getting hit as much and am getting over them easier and quicker without meds. It's been almost 6 months since I've been on the O2 program (research program) and my prevents have been cut in half and my aborts have become non-exisitent. And my headaches have gone from several a day down to a few a week.

Hugs BD

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Skyhawk5

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Re: Preventers and search
Reply #10 - Dec 7^th, 2008 at 12:12am

Wendy,

I am not a typical case, and only gave my case as an example. Here is my story. In the beginning I was chronic for 28 months and was put on verapamil and this seemed to break me into Episodic. Several years later I went into a cycle that lasted over 9 months so we added Lithium and this seemed to break this cycle. So I have been taking these meds since then. 15+ years.

My Neuro and I see no reason to change this as the risk is high. Would you agree? Like I said I'm an unusual case but an example of the oposite of what is generally thought.

Best, Don

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George

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Re: Preventers and search
Reply #11 - Dec 7^th, 2008 at 1:30am

Speaking only as a (very fortunate) episodic, I've been reluctant to add pharmaceutical prevents to my arsenal.

Why?

I'm a very reliable seasonal episodic. My cycles have consistently been 6-8 weeks in length. The only time I've gone longer is when I was using Sansert and opioids, lo these many years ago (mid-seventies). I went four months in a cycle--twice. Since then, I've opted not to medicate.

I realize that not medicating is NOT an option for many. If I had gone chronic at any point, my decision may well have been different.

All I can say (and this is purely anecdotal, based only on my own experience) is that I will probably never elect to use preventive medications. The cycles have gotten farther and farther apart over the years, but have not increased in length or intensity.

I cannot and will not advocate this as an approach for anyone else, but for me, I think it's been best. In any event, I do not regret it.

Best,

George

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Re: Preventers and search
Reply #12 - Dec 7^th, 2008 at 1:51am

Skyhawk5 wrote on Dec 7^th, 2008 at 12:12am:

Wendy,

I am not a typical case, and only gave my case as an example. Here is my story. In the beginning I was chronic for 28 months and was put on verapamil and this seemed to break me into Episodic. Several years later I went into a cycle that lasted over 9 months so we added Lithium and this seemed to break this cycle. So I have been taking these meds since then. 15+ years.

My Neuro and I see no reason to change this as the risk is high. Would you agree? Like I said I'm an unusual case but an example of the oposite of what is generally thought.

Best, Don

Hi Don

I can't agree or disagree, I don't know! Wish I did.

I was asking because your story is a bit different to many/most and I wasn't sure I had understood correctly.
Going straight to chronic is so awful, I can't contemplate how you coped because you had no pain free time right from the off.

CH is a wily beast and morphs, and we are all different and react differently to what we are treated with.

Also different doctors do different things to treat, that's why it is so important to share info and why often we seem awfully "nosy".

Certainly the expert advice here has been that medication "holidays" are usually suggested after a number of years of continuous use, but I think this is often when people's tolerance to Verapamil has resulted in the doses becoming what Goadsby calls "heroic" i.e. really huge and side effects are happening.

One of the things they do here with intractable chronic CH is take people off the Verap and do in-patient DHE intravenous treatment to try and "break" things or at least buy the person some painfree time but this involves hospital stays and is by no means guaranteed to stop the attacks for any length of time.

Some people then go back onto the prevents afterwards, but some choose not to return to permanent use of prevents at all and seek other avenues such as aborting only, using "alternatives", short course steroids or in some cases the ONSI operation.

You have to be guided by your neuro, who hopefully knows all the options (you need to fill him/her in if they don't!!!), then make your own decisions based on what you have learned and they suggest.

No-one can tell you what is best because they aren't you,they can only tell you what they know or what has worked for them or what options there could be.

Best wishes to you and wishing you as much pain free time as you can get by whatever means you choose

Love

Wendy

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