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Message started by Tweeg on Sep 26th, 2009 at 6:57am

Title: Hi all
Post by Tweeg on Sep 26th, 2009 at 6:57am
Hey there.

My name is Marco, 22 years old living in the Netherlands.

My general practitioner diagnosed me with CH some time ago now.

October 14th i have an appointment at the neuro to offically diagnose me.

I did my first 2 cluster periods (how u people call those ?) without any medication, but at the third i went to see my docter.

Using verapamil (240 mg) and imigran (known as imitrax for us people i guess) 6sc now.

Right now im in the middle (or end i hope) of a cluster/period, its my 8th week and im having 1 sever attack in the morning at 8. Sucks bad cuz im on the bus on the way to my internship then.

Anyway, cool to find these boards, read some cool stuff about ice and coffee i never heard of :) will check those out.

ps: excuse my english :P

wait im a retard, i just had my birthday (090909) and im 23 not 22 xD  :D

Title: Re: Hi all
Post by barry_sword on Sep 26th, 2009 at 8:54am
Hi Tweeg and welcome. Sorry you had to come looking for us but you are with others now who truly understand your pain. Sorry you got a hit in public, that is one of our worse fears.

Read all the info to your left and talk to your doc about oxygen to abort CH's, works for most of us here.

  Barry :)

Title: Re: Hi all
Post by Tweeg on Sep 26th, 2009 at 9:09am
Thx :) Yeah i get those hits every day in public on the bus. Its a 30 min bustrip so thta kinda sucks  >:(

Title: Re: Hi all
Post by Guiseppi on Sep 26th, 2009 at 9:31am
The hits in public are thevery worst!!! The dose of verapamil you are on is kinda low. Most find they have to go higher then that to get relief. Work closely with your doc as verapamil is a med that must be monitored closely when you change doses.

And your English is fine. ;) Glad you found us, welcome home.

Joe

Title: Re: Hi all
Post by Lottie on Sep 26th, 2009 at 12:50pm
Welcome Marc, from another Dutch clusterhead. Great you found this place, but sorry for the reason why you had to.

Let us know how your neuro appt went!

Lottie  [smiley=wave.gif]

Title: Re: Hi all
Post by Tweeg on Sep 27th, 2009 at 5:42am

Guiseppi wrote on Sep 26th, 2009 at 9:31am:
The hits in public are thevery worst!!! The dose of verapamil you are on is kinda low. Most find they have to go higher then that to get relief. Work closely with your doc as verapamil is a med that must be monitored closely when you change doses.

And your English is fine. ;) Glad you found us, welcome home.

Joe


My doc is not very experienced with CH. The first time i got there he just wrote down the symptoms i described and grabbed a medical enceclopedia to look it up.

Well he cant help it, i thank him for not sending me home saying i got migraine or normal headache. Atleast he gave me the verapamil and imitrex :)

And ofc ill let u know how the neuro appointment was :)

Title: Re: Hi all
Post by Lottie on Sep 27th, 2009 at 8:39am
Well let's hope your neuro is more experienced with CH then!

I was misdiagnosed by the first neuro I saw. A few months later I saw a headache specialist (a neuro who specializes in headaches) and there I got diagnosed correctly. There are several ha specialists in The Netherlands. Maybe something to keep in mind if you get stuck.

Lottie

Title: Re: Hi all
Post by Tweeg on Sep 27th, 2009 at 9:04am
Could u pass me the names/hospitals they work at ? Wont hurt to know some specialists :)

Title: Re: Hi all
Post by Lottie on Sep 27th, 2009 at 12:58pm
Sure, check your PM's.

Title: Re: Hi all
Post by Tweeg on Oct 16th, 2009 at 2:53pm
Sorry for the late update :)

My neuro diagnosed me with ch. And i told him my verapamil stopped working after a while. He said i could raise the dose i take (got 240 mg now). But before he could he sent me to the cardiologist to make an ECG to check if it will cause (or caused) any problems.

Seems like my cycle/cluster is almost done now so no real inmediate action was taken, i can call him the moment my next starts.
:)

Title: Re: Hi all
Post by Bob_Johnson on Oct 16th, 2009 at 6:22pm
Print both of these articles and give to your doctor. Both of you will benefit.
=====

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE (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]
==========
HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
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. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
(Thanks to "cluster" for link.)



Title: Re: Hi all
Post by bejeeber on Oct 16th, 2009 at 9:40pm
And also in a real pinch (like on the bus), the imigran inhaler, while not quite as guaranteed as the injection, works for some clusterheads.

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