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Back after five years... (Read 1097 times)
miCHel
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Back after five years...
May 19th, 2009 at 3:03pm
 
Hi all,

After 5 years of being PF, guess who came back to knock on my door (and in my head) this week?  God, I had almost forgotten that horrible pain  Embarrassed

It's a very weird sensation to feel this after such a long time.  Strange thing is that they are hitting at about 5,6,7 on the Kip scale while they used to always hit at 8, 9, 10.  That's the good news I guess... But my cycle is just beginning and I'd like to fight with everything I can

So I took the dust off my old Imitrex injection pen and called my wonderful doc to get presciptions for Prednisone, Verapamil and Trex.  My problem is that I can't recall what my dosages were or should be for Pred and Verapamil?  Is there an "average" I should start with?  I am a fairly big guy at 6'1, 215 pounds and otherwise in pretty good health.

Thanks everyone.  Any input I can get would be greatly appreciated.  And if there is a new miracle cure out there, please feel free to let me in on it...  Wink

Take care!

miCHel

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Good one Scotty!  Now beam down my clothes...
 
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DennisM1045
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One wave at a time!


Posts: 3437
Haverhill, Massachusetts, USA
Gender: male
Re: Back after five years...
Reply #1 - May 19th, 2009 at 9:34pm
 
Hi MiCHel,

Welcome back ... I think  Undecided

Sorry to hear your remission is over.  You'd do well to read up on new info.  A lot of stuff has changed for the better in the five years you were PF.  The main thing is Oxygen therapy.  Read the oxygen info on the left.

I used Verapamil for a few cycles and it worked pretty well once I switched to the regular release formulation from the sustained release formulation. 

I used Imitrex for what broke through until I got my Oxygen use straightened out.  Now I hardly use any at all.  High flow O2 is a real beast killer  Wink

Here is the Verapamil info you asked for...

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Quote:
Brief Communication
Individualizing Treatment With Verapamil for Cluster Headache Patients
Joseph N. Blau, MD, FRCP; Hans O. Engel, FFOM, LRCP&SE
Address all correspondence to Joseph N. Blau, MD, FRCP, City of London Migraine Clinic, 22 Charterhouse Square, London EC1M 6DX, UK.
From the City of London Migraine Clinic.

Copyright 2004 By the American Headache Society
KEYWORDS
cluster headache • treatment • verapamil
(Headache 2004;44:1013-1018)

ABSTRACT
Background.—Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses—720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved.

Objective.—To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly.

Methods.—Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication.

Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction.

Chronic cluster patients were reviewed as often as necessary.

Results.—Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy—lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn.

Conclusions.—Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary.


--------------------------------------------------------------------------------


Accepted for publication July 19, 2004.

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
dennism1045 dennism1045 524417261 DennisM1045 DennisM1045  
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miCHel
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x1|Montreal (Candiac, Quebec)
Gender: male
Re: Back after five years...
Reply #2 - May 21st, 2009 at 10:10am
 
Thank you so much Dennis.  That is exactly what I was looking for!

I do know about oxygen although I have never tried it.  Well I tried it once in my doctor's office when I got hit during a visit.  It did not work that time but I think the airflow was too low and I would certainly be willing to try again (especially at home).  I must say the Trex shots work like magic for me.

Got myself a neuro appointment for tomorrow and I should be set up to start fighting Mr Beast again... They still had my file and it turns out my remission was six years, not five.  Time flies when you are PF... Tongue

Thanks again for the precious info.  Have a good one.

miCHel
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Good one Scotty!  Now beam down my clothes...
 
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DennisM1045
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Posts: 3437
Haverhill, Massachusetts, USA
Gender: male
Re: Back after five years...
Reply #3 - May 21st, 2009 at 2:22pm
 
I'm glad the info helped.

Like I already said, Oxygen is a much better alternative to Imitrex injections for me.  I encourage you to give it another try.

Good luck.  I hope your cycle is a short one.

-Dennis-
(who is stepping off his soap box now Wink)
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
dennism1045 dennism1045 524417261 DennisM1045 DennisM1045  
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miCHel
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Posts: 202
x1|Montreal (Candiac, Quebec)
Gender: male
Re: Back after five years...
Reply #4 - May 22nd, 2009 at 2:11pm
 
Hi Dennis,

Thanks again.  Just saw the neuro and he was great.  Got my Verapamil and Imitrex injections prescriptions and he also suggested Zomig nasal spray which I have never tried.  But no Pred, I was a bit surprised but he was great in explaining everything to me.

As for O2, if my cycle goes bad (my hits are still low on the KIP scale), I will see my doc again in a couple of weeks and we will definitely explore this option some more.  You can stay on the soap box...

By the way, I think it was your Boston Bruins crushing our Habs that started my cycle... Wink
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Good one Scotty!  Now beam down my clothes...
 
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DennisM1045
CH.com Alumnus
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One wave at a time!


Posts: 3437
Haverhill, Massachusetts, USA
Gender: male
Re: Back after five years...
Reply #5 - May 26th, 2009 at 11:28am
 
miCHel wrote on May 22nd, 2009 at 2:11pm:
By the way, I think it was your Boston Bruins crushing our Habs that started my cycle... Wink

So sorry about the outcome there ... your CH ... not your Habs  Grin

Good luck...

-Dennis-
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
dennism1045 dennism1045 524417261 DennisM1045 DennisM1045  
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