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Should have known better (Read 1340 times)
nanny deb
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Should have known better
Nov 14th, 2011 at 1:38pm
 
After 5 weeks of hell i thought i had seen the last of my headaches as i had gone 4 days without one.Stupid, stupid me,i got well and truely taken in, Damm damm damm.
Decided to do something normal today and do some crimbo shopping.After only a couple of hours the dreaded warning came, a blocked up nose and weepy eye, by the time i got home to my oxygon it was full blown and i was a gibbering wreck.Just came out of my 3rd attack and feeling so fed up.Is this the start of another session or what?Just want to sit up a corner and sob, i think hubby is losing the will to carrying on supporting me, his face said it all when i told him i needed to get home quick.
Sorry to winge on folks, needed to rant to those who understand,
hugs
debbiexxx
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Guiseppi
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Re: Should have known better
Reply #1 - Nov 14th, 2011 at 2:34pm
 
Major "don't like." Cry

Are you on any prevent med? Have you recently changed the dosing levels or stopped taking it?

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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nanny deb
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Re: Should have known better
Reply #2 - Nov 14th, 2011 at 3:27pm
 
I am taking Zomig which has always worked for me, my doctor was hoping that the oxygon would work on its own as in his words the Zomig is very expensive.This doesn't help as i feel guilty whenever i re-order the Zomig.Don't know if the alternatives are any cheaper.He did try to palm me off with Imigran but i told him that this drug is no good for cluster headaches,don't think he was convinced.
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Brew
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Re: Should have known better
Reply #3 - Nov 14th, 2011 at 3:51pm
 
Imigran (Imitrex) is no good for CH? Huh?
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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Not4Hire
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Re: Should have known better
Reply #4 - Nov 14th, 2011 at 4:36pm
 
While there's no disputing Imigran (Imitrex) makes a cluster go away for a time, a lot of folks (me included) believe they actually extend a cycle.

YMMV  Cool
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Guiseppi
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Re: Should have known better
Reply #5 - Nov 14th, 2011 at 4:51pm
 
If he offers you the imigran injections, take them. The little stat dose pen fits in your pocket, purse, glove box, etc. I use them only when I'm away from my oxygen, but they'll help even if I've let the beast get a toehold on me. The nasal spray imigran works for many, I've never tried them. The pills work way too slow to be of much worth to a CH'er.

I stole the following from a Bob Johnson Post, one of our best research minds on the board. Print it out and share with your doctor. The reason verapamil is such a  popular prevent is its excellent track record:

If you haven't see this protocol, it's widely used:

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    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).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

   
I hope this helps.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Brew
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Re: Should have known better
Reply #6 - Nov 14th, 2011 at 5:15pm
 
Not4Hire wrote on Nov 14th, 2011 at 4:36pm:
While there's no disputing Imigran (Imitrex) makes a cluster go away for a time, a lot of folks (me included) believe they actually extend a cycle.

YMMV  Cool

No, I realize that. Just strange that a doctor would say what's being purported.
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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LasVegas
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Re: Should have known better
Reply #7 - Nov 14th, 2011 at 5:18pm
 
Hope for the best and prepare for the worst!
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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
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Sandy_C
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Re: Should have known better
Reply #8 - Nov 15th, 2011 at 3:37pm
 
nanny deb wrote on Nov 14th, 2011 at 3:27pm:
He did try to palm me off with Imigran but i told him that this drug is no good for cluster headaches,don't think he was convinced.



Your doctor tried to "palm you off on Imigran(Imitrex) and you told him it was no good for cluster headaches? 

Deb, Imigran/Imitrex has been the first abortive medication prescribed to cluster headache suffers for years and it is extremely effective in aborting a hit.  It is not a preventative med, but an abortive med.  If taken as prescribed, you can stop a hit within minutes.

Please read the "imitrex tip" on the left side of your screen where you will see methods on a lower dosage that will still abort your hits.

Yes, Imigran/Imitrex can extend cycles and also can be detrimental to your health.  I'm a prime example of this - I cannot take Imitrex in any dosage level due to heart problems.

But, to tell your doctor that, in your opinion, Imitrex does not work on CH is mistaken.  I'm not surprised he wasn't convinced.
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Linda_Howell
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Re: Should have known better
Reply #9 - Nov 15th, 2011 at 5:32pm
 
Just want to "ditto" whsat everyone thus far has said about Imigran.  Besides 02, it is the number abortive and very good when you're away from your 02.   To be used sparingly for sure.

Quote:
i think hubby is losing the will to carrying on supporting me, his face said it all when i told him i needed to get home quick.


I'm really sorry you have a husband who you fear will not support you much longer.  That really sucks.  Our husbands and wives who support us without question are worth their weight in gold to us.  Is there any way you can get him to check out this site for a better appreciation of what you go through and that none of it is your fault? 

Linda
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Hurt people.....hurt people.   Think about it.
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