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K7-8 broke through Prednisone last night... (Read 3612 times)
Jason
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K7-8 broke through Prednisone last night...
Nov 8th, 2008 at 11:31am
 
Thanks to 40 mg Prednisone every day, I have enjoyed a pain free week.....pain free that is, until last night when I awoke at 2 am in the middle of a "bad enough" unexpected attack from the beast. I was surprised....today was supposed to be the first day of a 7 day taper on pred....I went to bed tired and was not expecting a headache last night.

What sucked worse than the headache was the fact that shadows persisted for the whole rest of the night and through this morning so far. Having a visit from the beast is bad....having a lingering visit and not knowing when it is going to fire up again is worse, IMO.

My O2 stuff came this morning....15 L regulator and NRB mask, so at least I have something to fight with tonight.

I'm hoping that O2 will lay the beast quiet for a little while tonight. I am about 4 weeks into cycle....hopefully, this is the peak or close to it.

Kind regards to all,

Jason

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DennisM1045
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Re: K7-8 broke through Prednisone last night...
Reply #1 - Nov 8th, 2008 at 11:47am
 
Sorry the beast broke through your armor Jason.

Are you ramping up on a prevent?

-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.
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Jason
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Re: K7-8 broke through Prednisone last night...
Reply #2 - Nov 8th, 2008 at 12:44pm
 
Yes sir, I sure am.....Verapamil at 120 mg right now.....the neuro is not quick to up the dosage...who knows why....but everything I read would suggest that 240 mg is kind of the minimum dosage..

I am very tempted to ramp up the dose myself, since the pills are right here in front of me. Working all day after ONE night of headaches is intolerable.....after several concurrant nights of headache, it is nearly impossible.
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BMoneeTheMoneeMan
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Re: K7-8 broke through Prednisone last night...
Reply #3 - Nov 8th, 2008 at 1:23pm
 
That does sound like a small dose for CH.  Please do not up your dose without your doc's consent.  That med regulates your heart, and your heart is important.

There could be a reason why the doc has set it so low.

PF wishes to you
B$
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"Fool me once, shame on, shame on you.  Fool - can't get fooled again"&&&&&&Think of how stupid the average person is, and then realize half the population is stupider than that.&&&&
 
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DennisM1045
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Re: K7-8 broke through Prednisone last night...
Reply #4 - Nov 8th, 2008 at 1:39pm
 
I'm with B$.  Never change your meds without your Dr on board. 

Print this out and bring it to him BEFORE your appt.  That way he'll have time to digest it before you two meet.

This is the article I used to discuss Verapamil and CH treatment with my Dr.  It won the day and TOGETHER we found my theraputic level of 400mg/day.

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Quote:
Individualizing Treatment With Verapamil for Cluster Headache Patients
Authors: Joseph N. Blau; Hans O. Engel

Source: Headache: The Journal of Head and Face Pain, Volume 44, Number 10, November 2004 , pp. 1013-1018(6)

Publisher: Blackwell Publishing

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.

(Headache 2004;44:1013-1018)


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.
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Jonny
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Re: K7-8 broke through Prednisone last night...
Reply #5 - Nov 8th, 2008 at 1:41pm
 
Jason wrote on Nov 8th, 2008 at 12:44pm:
I am very tempted to ramp up the dose myself, since the pills are right here in front of me.


Dont be a jerkoff, listen to B$ and call your doc before you up that shit!

The higher you go on Verap, the slower your heart beats!

CALL YOUR DOC! Angry
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ChefChris
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Re: K7-8 broke through Prednisone last night...
Reply #6 - Nov 8th, 2008 at 1:45pm
 
insted of prednisone have you ever tried decadron? its a little stronger steroid. i have had luck with it in the past. just an idea.
chris
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life is great clean. thanks NA and rehab. clean date August 4, 2010
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Jason
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Re: K7-8 broke through Prednisone last night...
Reply #7 - Nov 8th, 2008 at 5:33pm
 
Thanks for the sound advice guys.

I won't do anything about the dosage without consulting the good Dr.

Maybe I can alter the timing of my current dosage though....right now I am taking it in the morning....perhaps I should be taking it in the evening ??

Also, we will be stopping by the health food store later tonight to see if I can procure some kudzu root....this almost seems silly given the amount of kudzu growing wild here in middle TN, but at this point I would really like some rest !! I am already taking Mg 250 mg twice a day; adding kudzu would get me close to the remedy proposed by Kilowatt 3 !!

We are about to have a week from hell down here on the farm....we have 13 new horses coming to board with us with the first four arriving from FL on Tues/Wed of this week, and the balance arriving from other parts of the country throughout the balance of the week and into next. In spite of the headaches last night and the constant K2-K3 shadow today, I worked my butt off outside getting things ready to go.

We also have our last of the season grass fed beef hanging at the butcher and waiting to be delivered to customers this week, and I have four (4!) speaking engagements in various parts of TN between now and Friday. This is excellent stuff....it'll help me pay for all the O2 I am about to start going through, but God do I wish it was happening OUT of cycle !!

Living your life in spite of these monsters is very sound advice...anything else would be a cop out, but at this point it would be pretty easy for me to cave in, sit in the house and watch the world go by.

Thanks again for the good advice.
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DennisM1045
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Re: K7-8 broke through Prednisone last night...
Reply #8 - Nov 8th, 2008 at 8:29pm
 
Jason wrote on Nov 8th, 2008 at 5:33pm:
I won't do anything about the dosage without consulting the good Dr.

Awesome!!!  See Jonny!  I knew he was smart  Wink

Quote:
Maybe I can alter the timing of my current dosage though....right now I am taking it in the morning....perhaps I should be taking it in the evening ??

That's not a bad idea.  Be careful of indigestion taking it so late at night. That was a problem I was having.  Had to take it with at least a glass of milk.

Quote:
Also, we will be stopping by the health food store later tonight to see if I can procure some kudzu root....
<snip>
I am already taking Mg 250 mg twice a day; adding kudzu would get me close to the remedy proposed by Kilowatt 3 !!

See now here is where you have to be careful.  Kudzu root and the Taurine in energy drinks are both calcium channel blockers.  Guess what your Verapamil is?  You guessed it ... a calcium channel blocker.  Block too many calcium channels and you get heart rythm problems.  Not a good place to be.

Be very careful mixing OTC remedies and alway tell your Dr.  OTC remedies are still drugs and can interact with your meds.

Good luck with the work load.  Sounds like a busy time up your way.

-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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Jason
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Re: K7-8 broke through Prednisone last night...
Reply #9 - Nov 8th, 2008 at 10:35pm
 
Well, sugar on the kudzu root then.....we don't need heart problems to go along with everything else.

I guess I ought to get along and see about some reading re: mode of action of some of these things. My degree is in animal science...always thought Taurine was an essential amino acid (especially for cats !!) and didn't know it had calcium channel blocking properties.

I'll have a look see about the kudzu root, too.

Thanks again.
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Ungweliante
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Re: K7-8 broke through Prednisone last night...
Reply #10 - Nov 9th, 2008 at 5:43am
 
I also think that you should be careful with the meds you take. I wouldn't take kudzu + Verapamil together myself and also would be careful about the energy drink + Verapamil combination.

On the other hand, I won't take Verapamil ever again anyways, since I got such huge problems with it without any benefits. Reached a dose of 480mg with no help.

Has the oxygen helped you yet? Remember to get a closed oxygen mask, which doesn't allow any airflow from outside. And also use it at the speed of at least 15 l / min, preferably even higher.

Luckily there are plenty of meds to be tried against CH. I'd guess it is not your first cycle, as you are doing the preventative + Pred taper combination. Also remember not to take 40mg of Pred per day for a week and then stop just like that. It's very important that you slowly reduce the dose, like for example 10mg per three days.

I also think that a dose of 120mg of Verapamil is very small. There are some reports of people getting respite from that dose in the medical literature, but I haven't heard of anyone here who requires only such a small dose. A typical dose which helps is 480mg - 720mg, or even higher.

After reaching a dose of 360mg or more, I would require the doctors to take regular electrocardiograms. I'm very glad I did back when I took Verapamil, as the ECG revealed bradycardia and the Verapamil was rapidly discontinued. I remember feeling constantly tired, like having a truck sitting on my chest. Climbing the stairs was a major accomplishment.

I hope you'll do better with it, though! Some people tolerate Verapamil very well.

- Best regards and PFDAN,
Rosa
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« Last Edit: Nov 9th, 2008 at 5:45am by Ungweliante »  
 
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Jason
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Re: K7-8 broke through Prednisone last night...
Reply #11 - Nov 9th, 2008 at 3:40pm
 
Thank you ma'am and sir.

Yes, I tried the O2 the other night in the middle of my K7-K8 breakthough headache....laid it low in about 15 minutes but I fought shadows the whole rest of the night and most of yesterday.

I'm not much of a fan of drugs of any sort either. However, after 16 years of no treatment whatsoever during my episodic headaches, and barely functioning through my day, my job and with my wife, I don't ever want to go down the "no treatment whatsoever" road again.

I think the Verap is having an effect, and at 120 mg I am not getting any side effects. Similarly, 30 mg Prednisone (my current taper level) is still having an effect also.

I'd like to have more O2 on hand than I currently do....the medical supply place gave me one E tank (which I can refill to be sure), but I've felt the need to be very careful about how much O2 I am using because of this. I am going to politely insist on at least one more E tank as soon as I need a refill this week. 

PFDAN to everyone.
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Ungweliante
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Re: K7-8 broke through Prednisone last night...
Reply #12 - Nov 9th, 2008 at 5:31pm
 
Madamoiselle!  Grin
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Jason
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Re: K7-8 broke through Prednisone last night...
Reply #13 - Nov 9th, 2008 at 6:27pm
 
Ahhh.....oui, mademoiselle ! Cool
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« Last Edit: Nov 9th, 2008 at 6:40pm by Jason »  
 
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DennisM1045
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Re: K7-8 broke through Prednisone last night...
Reply #14 - Nov 9th, 2008 at 6:47pm
 
Jason wrote on Nov 9th, 2008 at 3:40pm:
Yes, I tried the O2 the other night in the middle of my K7-K8 breakthough headache....laid it low in about 15 minutes but I fought shadows the whole rest of the night and most of yesterday.

Wait till you see what it does when you catch the attack early  Cool  Welcome to the 70% club.  I couldnt' be happier that this works for you.
Quote:
the medical supply place gave me one E tank (which I can refill to be sure), but I've felt the need to be very careful about how much O2 I am using because of this. I am going to politely insist on at least one more E tank as soon as I need a refill this week.

Most of us keep several tanks on hand.  I myself have one m-tank I keep in the bedroom and 7 e-tanks.  I carry an e-tank around with me in the car and keep another in my cube at work.  I go through a lot of O2 in cycle.  It's not unusual for me to burn through all that in less than two weeks.  I never let myself get down below two e-tanks before I'm calling for refills.

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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