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        New Message Board Archives >> 2003 Posts >> Higher Dose of Verapamil Working!!
        
(Message started by: Wendy1 on Apr 15^th, 2003, 2:00pm)

Title: Higher Dose of Verapamil Working!!
Post by Wendy1 on Apr 15^th, 2003, 2:00pm

I have had clusters for 20+ yrs. Been through the gammut, every med imaginable, Diamond H/A Clinic, ER, every prophylactic imaginable, DHE injections, Sansert, Bellergal, you ppl know exactly what I'm talking about.

Every cycle has been.. try this, try that but basically the cluster just ran it's cycle.

This time I started out on 300 Veralin PM; did not work. I finally got into my neuro, he changed me to Verapamil 360 mg twice daily (neurologist told me the biggest mistake for treating Clusters with Verapamil is the dosage is not high enough to work). THIS IS THE FIRST TIME SINCE having CLUSTERS that I've actually had 4-5 days without anything higher than a 3 after I've started my cycle.

Maybe this is all news to most of you, but I am on cloud nine thinking this dosage may be able to get me through this cycle. I have had to use the water and O2 for a couple small ones, but no biggies for a few days.

I am however, very tired (sleepy) during the day. Any feed back on any of this?

So excited I wanted to share this with you all!

PFDAN, Wendy

Title: Re: Higher Dose of Verapamil Working!!
Post by cathy on Apr 15^th, 2003, 2:12pm

Hi Wendy

Im really please that you may have finally found something that is working for you, I hope it turns out to be so.

Wishing you PFDAN's

Cathy :)

Title: Re: Higher Dose of Verapamil Working!!
Post by stevek on Apr 15^th, 2003, 2:17pm

Wendy,

I have been using 480mg of verapamil for the past several cycles. Any less does not work for me. I still need O2 and imitrex to deal with the break through CHs (about 5 a week) . The verapamil makes me feel tired, which I hate. Now I feel like sleeping all of the time but I never sleep well. But tired is much better than a couple of CHs each day!!

Take care, SteveK

Title: Re: Higher Dose of Verapamil Working!!
Post by JDH on Apr 15^th, 2003, 3:06pm

Hi Wendy,
Glad to hear you've got it under control.
I take 480 mg Verapamil daily when in cycle and on the advice of my Dr. and a few people here I take 120 mg daily when not in cycle. The idea being that when the next cycle starts, I'll already have it in my system and it will take effect much faster when I up the dosage.
Verapamil along with Imitrex and o2 for abortives have definitely made a difference.
good luck and hoping you stay pf,
Jim

Title: Re: Higher Dose of Verapamil Working!!
Post by eyes_afire on Apr 15^th, 2003, 4:58pm

Yup, mee too tired.
And trying to drink more applejuice. ::)

Title: Re: Higher Dose of Verapamil Working!!
Post by jonny on Apr 15^th, 2003, 5:04pm

Hi Wendy,

Verap worked for a very short time for me, if this happens to you do what I did. Just add some Lithium, it has worked great for 12 years now.

Just a thought.

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

Title: Re: Higher Dose of Verapamil Working!!
Post by cluster0557 on Apr 17^th, 2003, 12:32am

I have been on 240 mg 3 x daily for 18 months. The first few weeks I was tired until my body got used to it and then sleepyness went away. I just had to remeber to exercise a few times a week.

Once I was used to it I found that the number of cycles was reduced significantly and the pain level in an attack was a lot less and would abort quickly in all cases with Imitrex.

Before I tried Imitrex I would first use O2 for 20 minutes if was a 7-8 level attack. 60% of time O2 would abort it.

Otherwise hello Imitrex.

Now 18 months later I am back down to 240mg SR in this cluster cycle. This was done recently because of a sudden significant drop in BP and Heart rate. We shall see what the repercusions are with the lower dose.

Title: Re: Higher Dose of Verapamil Working!!
Post by boos2 on Apr 17^th, 2003, 12:25pm

The Verapamil (Verelan PM too) has been working for me too. Was PF for 2 yrs till this month.

Yes I'm tired all the time too. Get winded real easy too. Which is hard for me because I used to be real athletic.

I take the same dosage all the time, no backing off during down time.

Wishing you the best. PFDAN

Mike