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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Whats your attitude towards this idea?
        
(Message started by: assaultme on Oct 7^th, 2007, 7:56pm)

Title: Whats your attitude towards this idea?
Post by assaultme on Oct 7^th, 2007, 7:56pm

I developed Ch something like 3 months ago. Had hard hits for 3 weeks until I came here and got the necessary info. I now take Verapmil, do 02 and have only needed Imitrex shots twice.

After the first three weeks ,and I got solutions, my Ch has been under really good control.
I haven't had any hard hits at all in almost a month. Only some small shadows that 02 took care of.

Now, here is my quandry:
I know for a fact that the less drugs you take, the better off you are...under "normal" circumstances.
I would like to stop taking Verapimil altogether.
Of course I would consult my Neurologist first.

I do, however, fear that the Verapimil is holding the CH at bay...and stopping may be an invitation for disaster...though I really cant prove that. I may just be over it for now or completely over it...I am not sure...no way to tell.

IF I stop taking it, is there a good chance that the CH could come back with a vengeance?

Is this a dumb idea?
Is it more healthy for me to just continue my regiment of Verapimil? Considering that I may end up on Prednizone again and a larger dose of Verapimil.

I think I know the answer, but also thought it would be an interesting question for y'all to take a stab at.
Cheers, Dave

Title: Re: Whats your attitude towards this idea?
Post by E-Double on Oct 7^th, 2007, 8:32pm

only you will know.
I have been med free for 1.75 years and have been in a chronic state for 3.5 yrs. It was my first cycle ever taking meds and it was very hard but it also was my first cycle diagnosed after dealing for over a decade. What did i know.
I came off my meds after having enough of the side effects and to be honest life got easier up until this past may-june where shit hit the fan.
I did an inpatient stay for dhe and life has been great since.
I can't tell you what to do. only you know your body.
If you feel that things are better on them then stay on them. if you feel it is worse or the same then get off.
no one begrudges anyone for doing what they have to do.

be well

Title: Re: Whats your attitude towards this idea?
Post by assaultme on Oct 7^th, 2007, 8:45pm

Thanks E-D for the input. I think I'm gonna give it a few months and see how things go.
Regards, Dave

Title: Re: Whats your attitude towards this idea?
Post by Brewcrew on Oct 7^th, 2007, 8:56pm

Heh, heh - He said E-D.

Seriously, for years my ace in the hole combo was verapamil and lithium. At one point I needed to try doing without the verapamil because of, heh heh, ED. Haven't taken it for over a year, and the lithium is working great all by itself.

The only way to find out is to find out. If that makes sense.

Title: Re: Whats your attitude towards this idea?
Post by Lotus on Oct 7^th, 2007, 8:59pm

Hi Dave

Are you on high dose of Verapamil? What is your blood pressure like on and off it? If you have underlying hypertension of some degree then staying on Verapamil even when you are no longer in a CH cycle is a good idea.

Verapamil is a Calcium channel blocker. It is used primarily as a med for hypertension. People have been on it for many years, some for life without any problem. So taking Verapamil long term is not a problem on its own.

However, if your blood pressure starts to drop and you get physical symptoms like dizzyness or ankle swelling then maybe you are ready to cut down or go off it. You need to discuss this first with your doctor though. Weaning off Verapamil slowly under medical supervision is safe and often without any bad effect. However, if your CH is still active then lowering the dose will see a return of headaches and/or shadows. If you reduce the dosage very slowly you can quickly build it up again if CH reappears. This should avoid having to restart a pred taper or needing other meds.

In my husband's case, he has existing borderline hypertension. His BP was 140/90 without any meds. He is completely out of cycle for more than 6 months now but he remains on Verapamil and is likely to be taking it long term. However, during his cycle, he needed and could tolerate 960 mg of Verapamil per day. Now he only needs and can only tolerate 180 mg per day.

Take care and I hope that your cycle has truly gone and for a very loooooooooooong time.

Annette

Title: Re: Whats your attitude towards this idea?
Post by assaultme on Oct 7^th, 2007, 9:35pm

Thanks Lotus for the help.
Yes, my blood pressure runs great before AND after I started the 120 mg. doses of Verapimil.
I take 1-120 at night before bed.

My blood pressure runs right with my 19 year old boy. Last time I checked it, it was something like 116/78
However, I can force it down by ...like mind control.
But it normally runs around less than 120 X less than 80...but not too much less.

BTW, since you say the Verapimil is safe long term, I am really thinking about remaining on it.

Why not just stay on it if it is not unhealthy??? right?

It is always possible that if I quit, it could bring on God knows what.

I guess it should be like the old Irish saying: If it aint broke, don't fix it.

Regards, Dave

Title: Re: Whats your attitude towards this idea?
Post by Lotus on Oct 7^th, 2007, 9:56pm

120 mg Verapamil per day is a low dose, even for people with hypertension alone and no CH. You are lucky that it works so well for you at such a small dose. Many people here need it much higher and they struggle with side effects.

BP of around 120/80 is perfect. However as we grow older all of us will have the tendency to develop higher blood pressure. It happens when the arteries start to block and harden due to cell aging. If we all live long enough we will all be on blood pressure med of one kind or another.

Since your BP is good and you are on such a low dose of Verapamil without any side effect, I personally dont see a problem with you continuing on longer. Hey, it may even prevent those occasional spikes when the kids get up your nerves and help you to remain cool, calm and collected ! ;;D

Annette

Modified to add: If you plan to stay on it, get your BP checked regularly like every 3 months or so, just in case.

Title: Re: Whats your attitude towards this idea?
Post by assaultme on Oct 7^th, 2007, 10:40pm

Annette, yeah I check it often. I'm 45 now and have no kids left. My 19 year old boy Andy and I live alone. He's no problem at all. Works with me at the fabrication shop and is my biggest supporter, besides the good folks here.
Thanks!!!
Best wishes, Dave

Title: Re: Whats your attitude towards this idea?
Post by DennisM1045 on Oct 8^th, 2007, 8:45am

Hi Dave,

I have borderline hypertension like Annette's husband. I take 180mg or verapamil and stay on itnwhen my cycle ends. My Neuro tried me on 240mg / day when I was out of cycle and I couldn't tollerate it. Kept passing out when exercising. It didn't keep my next cycle from coming either. Next cycle I'm going to titrate up to a higher level and see if it can keep the beast completely at bay.

In the end it is up to you to listen to your body and decide what is best. Good luck bro...

-Dennis-

Title: Re: Whats your attitude towards this idea?
Post by southwalessunshine on Oct 8^th, 2007, 4:33pm

That is a low dose of verapamil. i just got prescribed it and my first dose is 80mg three times a day for 2 weeks then it goes up every 2 weeks providing my ecg is fine until we get to the magic number. So you are really lucky that it's working for you.
You didn't say if you were episodic or chronic. i'm assuming that you're chronic if you've been put on verapamil long term, so you must've been gettinh hit pretty bad before? if so, then i would say you've not been on verapamil a very long time just yet and I would tend to think it would be better to saty on it for a while yet, then maybe take a break after speaking with your doc. it's the old thing of I feel better so I don't need the drugs anymore. i have a friend that did it with anti depressants and she crashed like nothing else. thois could jump up and bite you in the arse and you could be setting yourself up for a taper on the cards and back onto the verapamil anyway.

Title: Re: Whats your attitude towards this idea?
Post by assaultme on Oct 8^th, 2007, 5:20pm

Thanks Dennis & Southwales !!!

I am only episodic so far S.W.
I started getting hit about maybe 3 months ago. It was only one or two times a day. Of course I thought it was a kip 10 for 10 times a day....the way I felt about it.

Truthfully, after becoming a member here, I believe my Ch was "baby aspirin" compared to some here !!!

But yeah, I will stay on them and see how it goes. So far, so good.
You make a really good point here:

"it's the old thing of I feel better so I don't need the drugs anymore"

Nothing could be more true. As you know, that is the very reason that antibiotics have been losing ground as of late....people felt better so they stopped taking them too soon.

Anyways, thanks for all the good input.
Cheers, Dave

Title: Re: Whats your attitude towards this idea?
Post by Pinkfloyd on Oct 9^th, 2007, 12:48am

on 10/07/07 at 19:56:36, assaultme wrote:

I know for a fact that the less drugs you take, the better off you are...under "normal" circumstances.
Dave

I'd say under MOST conditions.

First of all, I would suggest getting off the verapamil as soon as you're sure the cycle has ended. But that's just my opinion. Calcium Channel Blockers (CCBs) are not like baby aspirin...heart healthy.

There is evidence that it can be toxic and effect things you'd rather not have it effect, such as, but not limited to, possibly causing hyperglycemia because it inhibits insulin release.

http://www.emedicine.com/emerg/topic75.htm

There is evidence that CCBs can cause heart rhythm problems.

http://health.ivillage.com/headache/headnews/0,,wbnews_bznn0d14,00.html

There is evidence that CCBs can extend the life of a cluster cycle.

If you want to see the abstract on this one, I'll have to do some digging around. I know I have it somewhere LOL.

Actually, as to extending cycles, I think that even Dr. Goadsby now feels that just about EVERYTHING we use to treat our clusters (prescription-wise) can have an adverse effect on the life of a cycle, or the number of attacks per day (again adversely), or both. If this IS true, and I believe it to be, I would think that it's best to get off the scripts as soon as the cycle has cooled down to the point that you can do so. It may help end the remaining shadows/smaller hits sooner, if you know you're at the tail end of the cycle.

Many docs used to suggest staying on some of the meds all during the in-between periods for episodics just so they wouldn't have to waste time (in pain) titrating upwards again when the next cycle began. With the evidence building that they can do more harm than good (cycle-wise), as I've outlined, I think most are now having people stop/taper off, asap.

So,,,my advice would be, ask your doctor about his views on when to begin stopping the medications.

It's much easier for those of us that have history to tell us about how long our cycles last and how they begin to act when they are nearing the end. On your first cycle, it's impossible to know for sure. You'll probably have to try beginning to back off slowly at some point to see if you can do without the verapamil.

good luck....hope you don't need it much longer,
Bobw

Title: Re: Whats your attitude towards this idea?
Post by Kevin_M on Oct 9^th, 2007, 1:00am

on 10/09/07 at 00:48:52, Pinkfloyd wrote:

You'll probably have to try beginning to back off slowly at some point to see if you can do without the verapamil.

good luck....hope you don't need it much longer,

For me Dave, I've tried to minimize usage whenever possible.

and would be of the opinion and regard quoted above.

Title: Re: Whats your attitude towards this idea?
Post by Beastfodder on Oct 9^th, 2007, 6:31am

Interesting dilemma.

It works for you and therefore is good.

Longer term it has a price you could pay in your health and exacerbate your CH.

Gotta to be your call - if the former do think about taking on a little exercise too. For me less meds is good.

Title: Re: Whats your attitude towards this idea?
Post by chewy on Oct 9^th, 2007, 7:37am

As a rule thumb I discontinue verap after I have had 2 weeks of pain free days and nights.

Title: Re: Whats your attitude towards this idea?
Post by assaultme on Oct 9^th, 2007, 9:06am

Wow !!!
Well, thanks all for the thought you have given this.

I know that many drugs can be argued to be either unhealthy or benign depending on the research one might find out there.

My attitude on any medicinal drugs is: The less the better !!

Yeah, I will give it some time, then speak to my doctor.
I have an appointment with him in 4 months.

He seems to understand Ch well and I think at that time we will likely discontinue use.

It's a calculated risk I suppose. If I stopped and suddenly had it come back worse...I might think "crap, what a mistake"
But conversely, if I don't stop, I may never get the benefits of being free of foreign drugs floating around in my body.

I'll get with the Doc in 4 months.

If I do stop and something happens, I will post my findings in hopes that it may help others here....another great thing about this board: you can come here & learn from other peoples actual experience.

Thanks again for all the good advise.

Cheers, Dave

Title: Re: Whats your attitude towards this idea?
Post by assaultme on Oct 9^th, 2007, 9:27am

Hey Pink Floyd:
How do you stop taking Verapimil?
I mean, do you just stop or start taking only one every other night (as opposed to every night before bed) and taper off from there?

You know something? I don't know much about medical stuff, but I do know a fair amount on how the body works as it relates to metabolism etc.

I too am relatively sure that anything we take has an adverse effect on the CH.
Reason I come to this conclusion is that when I learned about diet & exercise, I learned that the body has a "baseline" it genetically follows.
Meaning that if we "trick" it with drugs, it tries to counter-react in order to get back to this baseline....because that is what it knows to be the "norm"

It's really true !!! A good example is the starvation diet.

You starve the body...yeah it will lose weight. But the minute you resume even a healthy diet...wham !!! it begins to over-store calories. Before you know it, you are back to your original weight.

Likewise, I think that the less drugs I use, the less I will force my body to stress itself.

Take a look at Imitrex usage in severe chronics !!!
They have to use & use & use to stop the pain.
Pretty soon the hits start coming harder & faster.
Damn body really has a mind of it's own.

Since I am lucky enough to not be chronic with multiple hits a day, I try to never use the Imitrex. If 02 works, that is all I use.

That way, I don't cause more severe & more frequency of hits.

Now, of course, severe chronics do not have a choice. We all know that. But thats that damn body doing what it wants...it is not easily tricked.

I know I seem to change my mind every few posts, please be patient with me, it's just fear & ignorance talking.

But I will likely try to stop & see what happens. As Floyd pointed out, I don't have much of a "history" as it relates to CH.
Maybe part of this "history" is trying things to learn what might happen. You know, nothing ventured, nothing gained.

Anyways, thanks again all for your thoughtful advise.

Cheers, Dave

Title: Re: Whats your attitude towards this idea?
Post by Wayne on Oct 9^th, 2007, 10:18am

Hi Dave

I asked my doc about stopping Verapamil, I'm currently on 480mg/day taking 6x80mg tablets in 3 doses of 2 each, 2 in the morning, 2 lunch time and 2 in the evening. He recomended a very slow taper cutting out 1 tablet every 4 days starting with the lunch time ones. He reckoned that a slow taper is necessary for two reasons:

1) stopping quickly is bad for you

2) Verap takes time to wear off. If you cut it out immediately you'd probably be ok for a few days but if the cycle isn't over you'll be hit hard and it will take a while to ramp up again. Tapering slowly will give you the chance to ramp up quickly again if needed.

Cheers,

Wayne

PS I think you're right about trying to trick the body, this is the first cycle I've been on Verap and its the longest cycle I have had.

Title: Re: Whats your attitude towards this idea?
Post by Kevin_M on Oct 9^th, 2007, 11:28am

on 10/09/07 at 09:06:35, assaultme wrote:

Yeah, I will give it some time, then speak to my doctor.
I have an appointment with him in 4 months.

He seems to understand Ch well and I think at that time we will likely discontinue use.

Dave, although I've worked with my doc for a long time before and since my beginning with CH, and see him quite frequently, sometimes I can just place a call, leave as much info as possible about the circumstances and he'll call me back either to say come in or ask questions and give advice since he knows my history well and everything is noted of all changes and what we've done before and its outcome.
If waiting four months seems a long time, try a call in and see what happens.

Just a thought.

Title: Re: Whats your attitude towards this idea?
Post by Pinkfloyd on Oct 9^th, 2007, 11:41pm

on 10/09/07 at 09:27:42, assaultme wrote:

Hey Pink Floyd:
How do you stop taking Verapimil?
Cheers, Dave

Wayne explained it (a taper and the reasons why) very well. You are at a low dose though and may be able to get off it rather quickly. Your doc may want to prescribe a few 80mg tabs. Those can then be split to 40s, as you back off on the daily dose.

I'm not sure if you're using a sustained release tab. I'm not sure if they even make a 120mg SR tablet. If you (or anyone) are on SR tablets, those shouldn't be split.

I agree with Kev though and if you feel good and want to get off the meds at some point, please give your doc a call. No reason to wait 4 months. You doc is the one with your medical history. He's the one that should lay out any taper.

good luck,
bobw