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Hello Happy to Have Found you Guys (Read 825 times)
audiotech
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Hello Happy to Have Found you Guys
Aug 2nd, 2011 at 1:16pm
 
Just returned from my Doctors surgery.

Having another bout of cluster headaches. I think my GP has now realised that what I've been saying after researching this condition is legit and I'm not making it up. Diagnosed with migraine for so long and prescribed amitriptyline for years. Hopeless.

This latest occurrence has been going on for four weeks now and reached its intensity earlier this week when the pain was that bad I attended an emergency clinic.

The attacks are at there worst at around 4am in the morning, regular as clockwork and boy it this the pain from hell. I'm exhausted.

I've been taking rizatriptan at the on-set of an attack, which does bring some relief if caught in time, however, my Doctor has now prescribed pizotifen and I'll take one tonight and see how these go?

Sorry, if what I've said has been covered elsewhere here, but I decided to jump right in and post to this board as soon as I found you.

Happy I've found this community to share thoughts and experiences on this mother of all conditions.
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Guiseppi
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Re: Hello Happy to Have Found you Guys
Reply #1 - Aug 2nd, 2011 at 1:20pm
 
I don't recognize either med, what part of the world do you hail from? I ask because much of the information tends to be area specific depending on the rules in your country.

Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

There are the alternative treatments, stuff out of mainstream medicine which are showing a pretty impressive success rate, read about those on our sister board:

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For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Bob Johnson
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Re: Hello Happy to Have Found you Guys
Reply #2 - Aug 2nd, 2011 at 3:31pm
 
FIRST. Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
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I'm guessing you are in the UK. IF so, please contact your excellent support group: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
They can help you work with your health system and, if my guess is right, you also have a right to ask for treatment at any headache clinic of your choice.
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Since we are flying a bit blind at this point, just some general information about Cluster.

Pizotifen is for migraine; has no application for cluster.

Print out the PDF file, below. Provides the latest evaluations of Cluster meds. Give to your current doc.

Print out:



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]
===

A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
------

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Search under "cluster headache"
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The complexity of headache is such that a good diagnosis is essential before you get involved in attempting to develop a treatment plan. Far too many docs lack education/experience with Cluster and so many folks have taken years to find a skilled doc.

No need to go on until we have a clear picture of your medical situation--skill or present doc, where you are located, etc.

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Bob Johnson
 
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RichardN
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Re: Hello Happy to Have Found you Guys
Reply #3 - Aug 2nd, 2011 at 10:17pm
 
Hello & Welcome to Clusterville

  . . . and ditto what Joe & Bob posted.

  You've found the motherlode of CH info/caring/sharing and the folks here truly know your pain. 

  Read, read, read . . .  ask any questions you might have.  With this condition you need all the info available to help you and your doc get you in control of this beast of ours.

   Be Safe,   PFDANs


      Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Batch
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Re: Hello Happy to Have Found you Guys
Reply #4 - Aug 2nd, 2011 at 10:43pm
 
Hey Audiotech,

Welcome aboard...  You've come to the right place.

Save yourself and the physician treating you a lot of time and needless pain by reading the following link:

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It will take you to the National Guideline Clearing House and the standard of care for the treatment of cluster headache and other trigeminal-autonomic cephalalgias prepared by a task force of neurologists from the European Federation of Nurological Societies. 

These are among the brightest minds in the field of neurology specializing in the treatment of patients with cluster headaches.  I've met on several occasions on the topic of treating cluster headache with Dr. Arne May, MD, Dr. Pete Sandor, MD, and Dr. Peter Goadsby on this task force...  These guys are giants when it comes to treating patients with cluster headache and they see more CH'ers in a week than most neurologists see in a life time.

The key chart from this link is shown below and it summarizes the most effective acute and preventative treatments:

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For an alternative approach to prevention of CH, please check out the following Post.  It's titled "123 Days PF And I Think I know Why" , on the New CH.com Forum. To view it, click the link below:

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Take care,

V/R, Batch
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« Last Edit: Aug 2nd, 2011 at 10:45pm by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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deltadarlin
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Re: Hello Happy to Have Found you Guys
Reply #5 - Aug 3rd, 2011 at 8:24am
 
Google is your friend  Wink

rizatriptan=Maxalt MLT

pizotifen=Sandomigran

I'm going to assume you are in the UK.  As soon as possible, you need to see a headache specialist.

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