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first time here (Read 1411 times)
Chad from mn
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first time here
Feb 26th, 2010 at 10:18am
 
Hi everyone

Been getting these for about ten yrs and i just hit my phase again.What a damn nightmare.Do the energy drinks really work?And what is the best preventative? My doc has me on Presnidone.I hate it
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Chad
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Re: first time here
Reply #1 - Feb 26th, 2010 at 11:21am
 
Greetings Chad, BTW nice name Smiley

Ok, here's the scoop and you'll get feedback from many others here with what they use for abortives and preventatives. 

Most popular abortives on this site:

-#1 would be oxygen using a non-rebreather mask
at a high flow rate (15 LPM or higher)
-Imitrex injections and you can use the tip on the left
to save.
-Energy drinks with 1000 mg Taurine

Popular preventatives:
-Verapamil
-Topamax
-Lithium

Natural preventatives:
-Kudzu
-KiloWatts concoction which can be found on this site
-rivea corymbosa, morny glory or HBWR seeds
-Melatonin (OTC) for a good nights rest

There are many more in each category.

The pred. is popular when folks ramp up on a preventatives like Verapamil.  It keeps the hits away while the prevent takes full effect.  It worked for me, but only the days I was on it.  As soon as the taper was over, I got slammed for round 2.

Do you go to a neurologists?  You need to find a good HA doctor or pain management specialist.
You'll need an MRI to rule out the worst.

Remember, clusters suck like hell, but they won't kill you and never think of the next hit because it will eat you up.  Enjoy those pain-free moments especially remission.  Feel free to ask anything.

Welcome to the family!

Peace out,
the other Chad
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« Last Edit: Feb 26th, 2010 at 11:44am by Chad »  

When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!
 
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Bob Johnson
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Re: first time here
Reply #2 - Feb 26th, 2010 at 11:28am
 
You will gain a lot of basic info by printing this entire anrticle and digesting it.

Pred is not a preventive, in the sense we use it. It rapidly breaks a cycle but it's not suitable for the long term use which we require. Couple of lists of meds below.

The longer article on how to use Verapamil, our most commonly used preventive, would be good to print out and give to your doc.
========
 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
============
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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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========
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.

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Re: first time here
Reply #3 - Feb 26th, 2010 at 11:32am
 
The best prevent, sadly, it varies a great deal from person to person. Prednisone provides 100% relief for me at doses as low as 30 mg a day. The down side is long term use of pred can really screw up your joints and internal organs. For CH patients, prednisone is typically used as a transitional medication. Most of our prevents take a week or two to become effective so we use a prednisone taper to get us through until our prevents kick in.

For a small percentage of CH patients, a pred burst will actualy stop a cycle completely. Sadly I'm not one of those lucky ones!

Verapamil is generally the first round prevent people try. We use it at doses higher then doctors are used to, some as high as 960 mg a day before they get relief. It can drop your blood pressure a lot so it requires close monitoring at first to establish an effective dosing that's safe for you.

I use lithium, at 1200 mg a day it blocks about 70% of my attacks, as long as I'm real careful about avoiding triggers. For me that's alcohol, sustained stress and screwing up my sleep cycles. Lithium requires a bit of blood work at first to establish an efective level. And forget the Hollywood portrayal of mouth breathing morons on lithium, we use it at doses far lower than that. Nothing a cup of coffee can't overcome. Topomax is also a popular prevent, many here on the board swear by it.

Energy drinks work great for some, not at all for others. I use them in concert with oxygen. For me, oxygen will halt an attack in its tracks in less then 10 minutes, but they tend to come right back within 20 minutes. Now I chug an energy drink when an attack is starting, and get on the 02. 02 knocks it down, energy drink seems to keep it from returning.

Take a minute and read the "oxygen info" link on the left. Feel free to print out the info and take it to your doc. Oxygen has all but eliminated my use of imitrex. It must be used correctly or it's useless. The key is getting 100% oxygen to the lungs. No outside air, no exhaled air. This can be accomplished using a Non Re Breather Mask, and a high flow regulator, at least 15 LPM, preferably one that goes to 25.

Glad you found the board, you will not find a more comprehensive collection of CH "first hand" knowledge anywhere!

Joe
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bejeeber
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Re: first time here
Reply #4 - Feb 26th, 2010 at 11:34am
 
Hey Chad,

Stick around and you'll find some good answers to those questions. That's my officiall prediction of the day.  Smiley

So you're on a prednisone taper? I'm not a fan of the pred myself, but that is especially because I was on a sustained high dose for CH once, which is a one way ticket to some potentially lifelong serious side effects. Some others who do pred tapers here have results they are happy with. This stoopid CH beast is very dodgy, especially in the preventative dept., and there's no one preventative prescription drug that works for everyone.

Higher doses of Verapamil are popular with some here (I haven't tried the high dose, can't comment).

In reality, the preventative that seems most promising to me as far as effectiveness vs. side effects is sub hallucinogenic doses of what could otherwise be hallucinogenic medicinal plants such as psilocybin. This is just going on reports from others who have gone there. Prominent medical researchers are launching clinical trials in this realm at harvard and in Europe. I haven't been able to try it myself. Not always easy for some of us to snap the fingers and have some (illegal) psilocybin at our disposal right when an episode hits. There are also RC seeds, a milder, legal to mail order botanical in the same category that some report results with. These topics can be searched here and at clusterbusters.com.

So what ya doin' for abortive?

You'll quickly notice how popular the newer method of O2 use a la the Oxygen info link on the left is in these here parts, if you haven't already.  Cool
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Chad from mn
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Re: first time here
Reply #5 - Feb 26th, 2010 at 12:05pm
 
What exactly is a non re breather mask?

i just got oxygen and what i have is a device that i place in my nostrils and thats it.Do i need something different?
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Re: first time here
Reply #6 - Feb 26th, 2010 at 12:36pm
 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

  This is one.

     Potter
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Chad
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Re: first time here
Reply #7 - Feb 26th, 2010 at 12:50pm
 
Chad from mn wrote on Feb 26th, 2010 at 12:05pm:
What exactly is a non re breather mask?

i just got oxygen and what i have is a device that i place in my nostrils and thats it.Do i need something different?
Use what Potter showed.  You can order one here for $27 and change, the Optimask.
Also, make sure that regulator goes to 15 LPM. 
A lot on here use 25 LPM and higher.  They may have only supplied  you with one that is 0-8 LPM.  The more the better.
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When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!
 
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Chad from mn
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Re: first time here
Reply #8 - Feb 26th, 2010 at 1:47pm
 
Thanks guys for the info.

Just got 18 more imitrex injections too
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Re: first time here
Reply #9 - Feb 26th, 2010 at 6:42pm
 
If you haven't yet, please read the "oxygen info" @ the link below.
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The nasal canulas (nose tubes) are not a good setup for CH. Educating yourself about the O2 & CH from this site will give you more info than most Dr's are aware of.

Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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Re: first time here
Reply #10 - Feb 26th, 2010 at 8:23pm
 
'ol Shaggy loves himself some caffeine during the very very start of the shadow preceeding the CH.  I haven't done energy drinks but I have gone straight to the nodoz (caffeine pills) because I don't need anything else apparently, like the coffee, flavorings etc. 

Everyone seems to swear by redbull etc.  Everyone's got their nuances so keep trying stuff until you find yours.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register has been very helpful to many.  It was mentioned above, but I felt the need to emphasize.  Given what people are saying about it and the experiences of a close personal friend, I think this shows a ton of promise.  But of course it will take forever to become legal.  And while we are worried about the legality, half the teenagers in the country and all of the jamband concert goers will be trippin' anyway Angry.

--Shaggy
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Re: first time here
Reply #11 - Feb 26th, 2010 at 9:32pm
 
If you just got 18 imitrex injections, then it is critical that you read and follow the imitrex tip on the left (link: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register)

You got 18? Score! That's a lot, and with the imitrex tip, those 18 doses will multiply to at least 36.  Shocked
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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