Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
Hi all (Read 2065 times)
Tweeg
CH.com Newbie
*
Offline


Wiie


Posts: 22
Netherlands
Gender: male
Hi all
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 Smiley will check those out.

ps: excuse my english Tongue

wait im a retard, i just had my birthday (090909) and im 23 not 22 xD  Cheesy
Back to top
« Last Edit: Sep 26th, 2009 at 7:11am by Tweeg »  
 
IP Logged
 
barry_sword
CH.com Alumnus
***
Offline


Mountain Biking Keeps
Me Sane


Posts: 3947
Bracebridge, Canada
Gender: male
Re: Hi all
Reply #1 - 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 Smiley
Back to top
  

QUIT SMOKING SEPT. 03 2005
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
 
IP Logged
 
Tweeg
CH.com Newbie
*
Offline


Wiie


Posts: 22
Netherlands
Gender: male
Re: Hi all
Reply #2 - Sep 26th, 2009 at 9:09am
 
Thx Smiley Yeah i get those hits every day in public on the bus. Its a 30 min bustrip so thta kinda sucks  Angry
Back to top
  
 
IP Logged
 
Guiseppi
CH.com Moderator
CH.com Alumnus
*****
Offline


San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: Hi all
Reply #3 - 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. Wink Glad you found us, welcome home.

Joe
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
IP Logged
 
Lottie
CH.com Veteran
***
Offline




Posts: 112
Gender: female
Re: Hi all
Reply #4 - 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
Back to top
  
 
IP Logged
 
Tweeg
CH.com Newbie
*
Offline


Wiie


Posts: 22
Netherlands
Gender: male
Re: Hi all
Reply #5 - 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. Wink 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 Smiley

And ofc ill let u know how the neuro appointment was Smiley
Back to top
  
 
IP Logged
 
Lottie
CH.com Veteran
***
Offline




Posts: 112
Gender: female
Re: Hi all
Reply #6 - 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
Back to top
  
 
IP Logged
 
Tweeg
CH.com Newbie
*
Offline


Wiie


Posts: 22
Netherlands
Gender: male
Re: Hi all
Reply #7 - Sep 27th, 2009 at 9:04am
 
Could u pass me the names/hospitals they work at ? Wont hurt to know some specialists Smiley
Back to top
  
 
IP Logged
 
Lottie
CH.com Veteran
***
Offline




Posts: 112
Gender: female
Re: Hi all
Reply #8 - Sep 27th, 2009 at 12:58pm
 
Sure, check your PM's.
Back to top
  
 
IP Logged
 
Tweeg
CH.com Newbie
*
Offline


Wiie


Posts: 22
Netherlands
Gender: male
Re: Hi all
Reply #9 - Oct 16th, 2009 at 2:53pm
 
Sorry for the late update Smiley

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.
Smiley
Back to top
  
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: Hi all
Reply #10 - Oct 16th, 2009 at 6:22pm
 
Print both of these articles and give to your doctor. Both of you will benefit.
=====

 
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]
==========
HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
(Thanks to "cluster" for link.)


Back to top
  

Bob Johnson
 
IP Logged
 
bejeeber
CH.com Hall of Famer
*****
Offline




Posts: 1359
Gnashville
Gender: male
Re: Hi all
Reply #11 - 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.
Back to top
  

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  
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!