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        Cluster Headache Help and Support >> Cluster Headache Specific >> Update and question! =D
        
(Message started by: Brettsta on Sep 10^th, 2007, 9:21am)

Title: Update and question! =D
Post by Brettsta on Sep 10^th, 2007, 9:21am

Hi everyone, i'm new here and spoke to few ppl past couple days who have really helped me. This site is brilliant! =D.. anyways lol...

Ok... update!!

Just got back from doctors. Told him what i suffer from which he should already know as my neurologist had sent him letters explaining my condition.... yadeeyada.... nope. He said to me yes but clusters are just a type of migraine aren't they... NO DOC! they're not!... oh... sorry he says...lol unbelievable. i then spent the next 50 mins with him explaining clusters, asked himto find the letter from my neurologist, which he did, and asked me what kind of medication i should take for this lol. (think i should become a doctor... loadsa money n u dont have to know too much about anything lol)

So... after all this and researching with him on his computer i now have 112 tabs of Verapamil 40 mg.

Now he has suggested i take 1 tablet, twice daily.... so total of 80mg daily. What do you think? Is this enough? Need 'professional advice' please lol

Thankyou in advance anyone who can help =D

Take care guys!!!

Dr Brettsta (lol)

Title: Re: Update and question! =D
Post by billyjoe on Sep 10^th, 2007, 12:23pm

I'd get a new doctor. Most neurologist will recommend prednisone for 2 weeks while tapering up on Verapamil. Usual dose of 80mg 3xday for 5 days, then 160 3xday. After that you see where your at, and if you need more you get a EKG and possible more.

Good Luck.

Title: Re: Update and question! =D
Post by Bob_Johnson on Sep 10^th, 2007, 2:44pm

Some of your dosing questions are answered in the article from Dr. Rozen which I linked in your other message.

This is the sort of docment which I'd take to the doc. Info from physician to physician carries weight.

Title: Re: Update and question! =D
Post by Brettsta on Sep 10^th, 2007, 2:47pm

oh ok, thanks a lot! =D

Yea he asked me if i could provide info with me next time. I know he's not a specialist but i do sometimes question his ability as a gp. Shouldn't they have some information? or ways of obtaining it?... i dunno lol

Thanks again!

=D

Title: Re: Update and question! =D
Post by chewy on Sep 10^th, 2007, 8:36pm

on 09/10/07 at 12:23:44, billyjoe wrote:

I'd get a new doctor.
Good Luck.

I wouldn't. Sounds to me like you have that rare breed of Doc who is willing to work with you and learn.

Now its up to you to educate yourself regarding effective treatments and bring that info to your Doc. All the education you will need can be found right here on this site.

As for the verapamil. I find 480 mg a day to be an effective dose for me. Two weeks into starting the verapamil I do a prednisone taper. This has been successful for me in either breaking a cycle all together or bringing the frequency and intensity of the pain to a manageable level.

Title: Re: Update and question! =D
Post by clusterwife on Sep 10^th, 2007, 10:11pm

I agree with chewy, atleast 480 to start with. 80 mg is low. Keep doing research, and print any info for the doctor. Leah.

Title: Re: Update and question! =D
Post by Brettsta on Sep 11^th, 2007, 5:16am

Thanks a lot for the response guys!

Ok... prednisone taper.... is this a big part of the process? What if i decide not to try this and stick with just the verapamil alone at say 240 - 480mg daily.
Is it possible this alone will help tremendously with my headaches?

And what does taper mean? like a short cycle or burst??? or something else altogether?

I will start taking my Veramapil at 240mg (80mg 3xdaily) a day today and increase if needed. is this a gd idea or do you think i should really be taking more than this to attempt to end my cycle?

Thanks again guys!

=D

Brettsta!!

Title: Re: Update and question! =D
Post by michael on Sep 11^th, 2007, 6:26am

A prednisone (steroid) taper is used as a quick fix while the verapimil builds up. You start on a fixed dose and taper off slowly over a couple of weeks - you cannot use this drug for an extended period or stop it immediately. Not using it will not effect the verapimil.

The verapimil may or may not work for you - it is trial and error.

DO NOT ALTER ANY DOSE OF YOUR DRUGS WITHOUT CONSULTING YOUR DOCTOR (Verapimil can be DANGEROUS)

See my answer to this post on the `GETTING TO KNOW YOU' board.

Mike

Title: Re: Update and question! =D
Post by BarbaraD on Sep 11^th, 2007, 6:43am

Bret,

I also agree with Chewy -- you have a doc who will LISTEN to you. That's rare. Educate him. Educate yourself first and then go to him armed with educational material and teach. He sounds like he's willing to learn.

I had a gp for years who was that way and we had a great relationship till he retired. He found "us" a neuro who was very astute on CH and we all worked together on my head. Still have the neuro (he's young), but am having to break in a new gp (have known him since he graduated from med school but it may take a while). But the secret with docs is finding one you can work with. When you find one who "admits" they don't know everything - you're one step ahead.

The pred taper will hold the headaches at bay until the verap has time to get in your system. It's not to be taken often - just at the beginning of a cycle while the prevents have time to take effect. Takes about 5-7 days(I haven't taken it in a while) to take the pack (you start with a large dose the first day and taper off each day after).

Good luck and keep us updated.

Hugs BD

P.S. You might also get a script for 02 -- that's most of our first line of defense for an abort.