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Newbie UK (Read 1250 times)
domino
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Newbie UK
Dec 19th, 2011 at 6:18pm
 
Hi - It took me 4 years to get a definite diagnosis of CH but for the last 18 months I've been seeing a neurologist - I take verapamil 160mg 3 times a day but have just been given imigran 20mg nasal spray with little explanation.  The script was for 2 sprays and the instructions say use 1 and another in 2 hours if needed, that sounds fine.  My problem is the scripts costs me £7.20 and if it only lasts for 1 attack what do I do for the next one and the inevitable one after that. I know the meds cost the Dr £14 as I saw it o n his computer screen and he asked why had I not been given tablets first (told him to ask neurologist, but he just tutted) If the past 2 weeks are anything to go buy I will need to remortgage lol.  Anyone have any suggestions.

Thank God for Red Bull...
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Guiseppi
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Re: Newbie UK
Reply #1 - Dec 19th, 2011 at 6:23pm
 
Welcome to the board!The tablets typically do not work for CH as they take too long to be absorbed, by the time they get into your system beasty is firmly entrenched and they don't help. I use the injections, have never tried the nasal spray, but many people get relief from the spray.

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Read this link. Oxygen should be your first line abortive. I kill my attacks in about 6-8 minutes by huffing oxygen, has all but eliminated my use of the imitrex.

Visit your local version of our site as it has a lot of area specific advice for your side of the pond:

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So glad you found us, hope we can help you.

joe
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wimsey1
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Re: Newbie UK
Reply #2 - Dec 20th, 2011 at 8:32am
 
Was the cost you mentioned for one dose (bottle)? If so, it's a bit pricey. I use Migranal spray, and it too is a four spray, two dose bottle, but for $45 with insurance I get 8 bottles, or 16 applications. Usually the first two sprays work for me, afther about 15 or 20 minutes. I use imitrex injections of 2mg (out of a 6mg injector) when I need faster relief or am away from my O2 for some stupid reason. Blessings. lance
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alex mac
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Re: Newbie UK
Reply #3 - Dec 20th, 2011 at 10:06am
 
Hi Domino,Yep GP's are great at handing out small prescriptions, i had the same problem with the imigran nasal spray 2 at a time,after bugging my doctor he is now prescribing me 6 at a time & yes it's still gets expensive! You can get a NHS Prescription Prepayment Certificate from the chemist, priced at £29 (3 month) or £104 (12 month) if that helps u out? Can i ask how u r getting on with the varapamil,as i'm just about to start using mine.Also get on the 02 "it helps" all the best ALEX.
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« Last Edit: Dec 20th, 2011 at 2:14pm by alex mac »  
 
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domino
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Re: Newbie UK
Reply #4 - Dec 21st, 2011 at 2:46am
 
My headaches run October to April was on 80mg but was having no effect this time round so was told to double the amount of tabs I take, however as yet not much difference hence being given the nasal spray this week.  The down side of verapamil for me is the headsweats - are they a tell for an attack, are they caused by the tablets or is it just my age (46) - not nice though.

The prescription only contained two applicators with one spray in each - had to use one at 3am this morning and have to say it did work after about 20 minutes but wasn't prepared for how awful it tastes.

No one has mentioned O2 yet but nerologist has said to see how nasal spray works for the next 2 months.  The cost isnt really an issue anything to stop the pain - perhaps if I need these more often than the Dr likes they may see O2 as a cheaper option (fingers crossed).

My major issue at present is work - unsympathetic boss with referal to occupational health and only had 4 days off this year.  Guess where I work - you got it NHS...  Neurologist is going to write them a letter oh an I have given them the note for work from the Ouch website.

Sorry to ramble on - it's good to have a whinge.
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Guiseppi
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Re: Newbie UK
Reply #5 - Dec 21st, 2011 at 10:27am
 
No worry with the ramble. Wink Your dose of verapamil is really low. Some go as high as 960 mg a day to get relief. I haven't heard of the night sweats, the most common side effects people post about are constipation and varying degrees of erectile dysfunction.

Do push really really really hard for the oxygen. 6-8 minute aborts are very common. It's cheap, fast, effective, no side effects, kinda hard to find a down side.

Go the medications section of this board, and check out the post "123 pain free days and I think I know why."
It's a daily vitamin and anti inflammatory supplement, all over the counter stuff, that's providing a lot of relief to board members.

Joe
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domino
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Re: Newbie UK
Reply #6 - Dec 21st, 2011 at 5:47pm
 
Thanks for your kind welcome and advise.
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Bob Johnson
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Re: Newbie UK
Reply #7 - Dec 21st, 2011 at 7:22pm
 
This protocol on the use of Verapamil is widely used in the U.S.. Consider printing it out and giving to your doc.
===
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.
=======
Nasal spray is not very effective with Cluster and the pill probably less so yet. Injection is first choice.

Number of us have found this med as effective as sumatriptan and almost as fast acting as the injection (this a pill). If you doc and system will allow, might try. It's much less on a per dose basis.
---
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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


Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
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domino
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Re: Newbie UK
Reply #8 - Dec 22nd, 2011 at 5:29pm
 
Thanks for the info - very interesting.

I work in mental health and was concerned when found out that Lithium could be used as a form of treatment.  Olanzapine has just topped that - lets hope an increase in verapamil dosage will do the trick cause I can't afford to buy new clothes and pay prescription charges   Wink
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Guiseppi
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Re: Newbie UK
Reply #9 - Dec 22nd, 2011 at 5:40pm
 
Don't let lithium spook you. I was a cop and I associated lithium with the people I took to County Mental Health so I initially refused to try it.

I've been using it as my prevent of choice for over 15 years. At 1200 mg a day it blocks 60-70% of my attacks and at that level if I didn't tell you I was on it you'd never know.

Hoping the increase in verapamil does the trick for you and we'll never know if lithium works for you or not! Wink

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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