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        New Message Board Archives >> 2003 Posts >> Episodics: Longer cycles on VERAPAMIL
        
(Message started by: ozzman on Oct 30^th, 2003, 10:07am)

Title: Episodics: Longer cycles on VERAPAMIL
Post by ozzman on Oct 30^th, 2003, 10:07am

At the request of Gregg (Las Vegas) I have copied my post from the longer cycles with Trex thread to here. Would like to hear others with similar experiences. Also when considering the longer cycles with Imitrex, don't forget to consider your preventatives. As I say in my post below, I haven't been taking much as far as abortives, mostly O2 and very rarely Imitrex, so the culprit is Verapamil for sure...

This is my second cycle this year with only 2 months of pain free time in between. First time in my life that I get two so close together. This secon cycle has been 3 or 4 months long so far and as soon as I felt it coming, I started ramping up on verapamil (80mg,160,240,320) I upped the daily dose when I had breakthrough CHs. Last week I figured this has been long enough so I decided to ramp down very slowly only a couple breakthrough CHs, nothing bad, no different than when I was at 320mg a day. Last two days i only had 240mg and boom got hit 5 times within 24 hours and each one increased in intensity. Long answer to a short question, Verapamil definitely lengthens the cycle, it did early this year and it is doing it now. However I am relatively pain free when on it. Maybe only 1 CH every 3 or 4 days and that only at a Kip4-5.

As far as trex, I'm not sure if it is the Trex or maybe even prednisone. As a matter of fact, now that I think about it, I have written down that as soon as I started on the prednisone, the pattern became erratic, couldn't set my watch to it anymore LOL

With all that said. Are preventatives worth it for episodics? Long mild to moderate cycle or short horrendous cycle

Ozzy

Title: Re: Episodics: Longer cycles on VERAPAMIL
Post by LasVegas on Oct 30^th, 2003, 10:20am

Based on what Ozzy wrote above, makes me wonder as this is my first experience with Verapamil. Only on 160 mg for 4 weeks and upped it to 240 mg these past two weeks. It is my longest cycle that I have ever recalled. Sansert worked within days last time and killed the cycle. Don't know if the Verap is the cause of the longer cycle this time, because it takes so long to get into the system to work or if it is the Imitrex (other thread) or if my cycle was just plain out longer this time. Something to consider when posting a reply as to if a particular medicine may make your cycle longer is what other meds you may be on. Have other meds been ruled out? Trial and error, guinea pig here PF almost 2 weeks and ready to wean off the Verap and 5 days away from no more Pred. Everybody's input as to this and other meds will certainly be of benefit for our research and development of understanding our nightmare.
Gregg in Las Vegas

Title: Re: Episodics: Longer cycles on VERAPAMIL
Post by eyes_afire on Nov 1^st, 2003, 12:26am

Here I am awake doing laundry at 12:23 am ::). Anyway, this verapamil specter raises it's head again... and scares the crap out of me. I don't know... this is very unscientific... since I've started verapamil, my cycles have become much longer. But maybe they would have become that way anyway... I don't know. But I NEED verapamil, I guess. I can't taper off the stuff. I've tried and CH returns. It looks like I'm damned to Verapamil Hell (which is much better than CH Hell... at least for a LITTLE while longer). I still advocate verapamil for treating CH, simply because it works great for me. I hope there is no hell to pay.

:-/

--- Steve

Title: Re: Episodics: Longer cycles on VERAPAMIL
Post by Prense on Nov 1^st, 2003, 10:06am

on 10/30/03 at 10:07:51, ozzman wrote:

As a matter of fact, now that I think about it, I have written down that as soon as I started on the prednisone, the pattern became erratic, couldn't set my watch to it anymore LOL

That is a common occurance...

on 10/30/03 at 10:07:51, ozzman wrote:

With all that said. Are preventatives worth it for episodics? Long mild to moderate cycle or short horrendous cycle

There are three goals with the use of a preventative for CH...
- reduce the frequency of the attacks
- reduce the average severity of the attacks
- end the cycle early

If you are not achieving any of these, then you should be searching for a new "cocktail". Reducing the frequency/severity of the attacks seem to be the most common achieved goals and perhaps more realistic. The important part for episodics is to start the med sometime before the cycle is "supposed" to start, or as soon as you see signs that the cycle is imminent.

If you don't take anything as a preventative, you may find your abortives do not work as well. I cannot offer personal experiences about an extended cycle due to possible med usage because I have been in my first "cycle" for the last ten years.

Personally, I would take the longer cycle if the HAs were less severe and/or less frequent.

Just some thoughts...

Chris

Title: Re: Episodics: Longer cycles on VERAPAMIL
Post by Lori on Nov 1^st, 2003, 11:43am

My cycles had always lasted for 6 weeks. This was without any proper meds and before being diagnosed with CH. I just took whatever I had, tylenol, motrin, etc. 6 weeks of pure torture and then gone. This last cycle in Feb 2002, I finally got diagnosed and placed on verapamil (360mg daily) and topomax and the cycle went for about 3 months. It was the least painful cycle though I had ever experienced, but the longest. I have thought about this and wondered if the meds made the cycle last longer. I would rather have less pain and a longer cycle since I only get one (normally) every two years. Maybe I will ask to try something different this next one. I don't know. I actually have an appt in two weeks with a new neuro (I've moved) to get set up before getting hit again (maybe in Feb??), so I will discuss this issue and see what we end up planning. I still have to vote for less pain though when I REALLY think about it.

Title: Re: Episodics: Longer cycles on VERAPAMIL
Post by ozzman on Nov 3^rd, 2003, 9:25am

Prense,Lori,

You both are right. The goal is to have less pain, less frequent. As I stated before, I began the preventative (Verapamil) before the cycle really started. Yes I have been relatively pain free. But I'm stuck. I can't go any lower than 240mg or else the beast seems to rear its ugly head. I will try again this week and see what happens. Plan B is go on Prednisone for a week (just the opposite of Pred first and then Verap) while going off of the Verap and see if that works or else find a competent Neuro that may have a clue about CH. Mine doesn't, he just gives me the standard treatment.

Ozzy

Title: Re: Episodics: Longer cycles on VERAPAMIL
Post by jonny on Nov 3^rd, 2003, 7:56pm

Verap----my best friend for well over a decade

Trex---Triples my HA's

...............................jonny

Title: Re: Episodics: Longer cycles on VERAPAMIL
Post by debbie4278 on Nov 3^rd, 2003, 8:50pm

I seem to be every 2 years. Have tried a few things. I don't think I have tried Verapamil. My drug of choice for years has been Procardia XP. But last year during a cycle, I discovered Zomig ZMT for the break thru CH. The imitrex hasn't worked for me, too slow for the pills, and maybe too much fat for the injections. But the ZMT under the tongue works great if I take it asap. If I wait too long, well, you know. The Zomig pills don't work for me, too slow, and the ZMT has to be the 5 mg. The 2.5 mg didn't work. The bummer of all of it, is the max limit you can take per day, and the effects on your heart. The Zomig is very expensive too. I cannot say if the Procardia lengthens my cycles. Average 3-4 months. When I don't feel the break thrus for a couple weeks, I start to wean off.
You know I was terribly terrified of orange juice specifically and all citrus fruits for years. I thought they caused my headaches. I was in a year remission. People thought I was nuts. I had a severe phobia.
HHhhmmmm....maybe I am.... ???

Title: Re: Episodics: Longer cycles on VERAPAMIL
Post by stevegeebe on Nov 3^rd, 2003, 8:56pm

Ozzy.

Our year has been very similar. Had a three week layoff in July and am now starting a tapper down of meds which includes Verapmil.

I never knew if it worked at all with me. I just kept taking it.

This I know after having including it in the mix for the first time.

This (has been..please) is my longest cycle.

Steve G
.

Title: Re: Episodics: Longer cycles on VERAPAMIL
Post by maggie_may on Nov 3^rd, 2003, 9:12pm

Last year was the first time I've ever been on verapamil, maxing at 240mg. My cycle was the longest it's ever been lasting from mid-October to mid-March. I can't say if it's lengthened my cycle, since before I was being medicated I was noticing that the demon would stick around a little longer and show up a little sooner.

I did notice that I didn't get the attacks as bad. But that's the point, isn't it, to make it minimal or going away completely? It never did abort the entire cycle though.

maggie

Title: Re: Episodics: Longer cycles on VERAPAMIL
Post by ave on Nov 4^th, 2003, 4:18am

I haven't been on Vera that long. Was glad when it cut the number and intensity of attacks.

It was only after I started shrooms that my attack system started to go haywire.

I was episodic. The beast visits now every day, but I have no pain at all!

So upsetting the pattern, turning well nigh chronic or being painless are none of them due to Vera.

Title: Re: Episodics: Longer cycles on VERAPAMIL
Post by ozzman on Nov 4^th, 2003, 8:45am

Today is (once again) day two of the taper down to 160. If the pattern keeps true to form, I should start getting hit around mid-day or mid-afternoon every three hours or so. If I don't, I will be able to claim success in tapering down, then wait a couple of weeks taper to 80mg. I want a beer so bad, all summer nothing! I want my beer, I want my beer, I want my beer.... [smiley=beer.gif]

Ozzy

Title: Re: Episodics: Longer cycles on VERAPAMIL
Post by K. on Nov 4^th, 2003, 11:44pm

I didn't really relate it to the Verap until I read this thread but my last cycle was the longest one I've ever had too. I did notice however, that my abortives worked better being on the Verap. I didn't need the trex nearly as much. O2 worked almost every time. So even though my cycle was much longer I was still able to function somewhat. I've had many episodes without meds...(before I was diagnosed)..that were absolutely excruciating so I'm choosing the longer but CONTROLLED cycle....at least for now.

K.