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Cluster Headache Help and Support >> Getting to Know Ya >> Is this the right place for me?
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Message started by Scandinavian on Dec 18th, 2008 at 11:32am

Title: Is this the right place for me?
Post by Scandinavian on Dec 18th, 2008 at 11:32am
Hi everyone,

I should start by introducing myself, 32 year old swedish woman, suffering from headache since a year back.

This August I was diagnosed with Horton's headache (as they call it here).

I have started to write a headache diary to try to make my own diagnosis and to understand the pattern of this crap. What I've found out so far is that if I don't get a good nights sleep I will most definately have an attack on the afternoon the coming day. Anyone else experiencing the same thing?

I have a medication called "Zomig nasal" which takes the worst pain if I use it in time, if not the pain will make me vomit... Could this be migraine?...

The symptoms however are very specific, a sharp pain always on the right side of the face, the eye starts running as well as my right nostril.

I I don't medicate I hardly cope an attack (reminds me of the worst few seconds of giving birth to our son except that it doesn't go away as quickly and there's no reward!).

I'm getting more and more frustrated with the situation. I have an attack every third day or at least once a week but in addition to that I have headache two or three times a day that aren't as severe but still keeps me from working, taking care of my children and keeping me from living my life!

How can I cope? What is there to do? When will this stop?!

Love,
S

Title: Re: Is this the right place for me?
Post by Bob_Johnson on Dec 18th, 2008 at 12:17pm
If you are working with a physician who has experience with complex headache disorders I would accept his diagnosis. There is nothing in your brief description which is inconsistent with Cluster.

You do no mention using a preventive medication to reduce the frequency an severity of attacks. I should regard that as essential, given the frequency you report.

Learning about your condition is essential to survival and effective coping. I'm listing a few items for your consideration and would suggest exploring the buttons (left) with their multiple internal links.
-------
 
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 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

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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:
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(Thanks to "cluster" for link.)
================

Finally, stay with us and read, read, read. You will find much shared experience and support.

Title: Re: Is this the right place for me?
Post by gizmo on Dec 18th, 2008 at 12:21pm
Welcome to the nuthouse family!

The symptoms sound like CH.


Quote:
I have started to write a headache diary to try to make my own diagnosis and to understand the pattern of this crap. What I've found out so far is that if I don't get a good nights sleep I will most definately have an attack on the afternoon the coming day. Anyone else experiencing the same thing?


Sleep deprivation is a trigger for some.


Quote:
I have a medication called "Zomig nasal" which takes the worst pain if I use it in time, if not the pain will make me vomit... Could this be migraine?...


Vomitting isn't one of the "classical" symptoms but happens and since your diagnose and other symptoms point to CH I wouldn't bother about migraine for now.

Since you were diagnosed you should go back to your neuro and ask for preventatives like Verapamil and Lithium.
Also make sure to get O2 as an abortive.
Meanwhile you can try strong coffee and energy drinks (like Red Bull).
Slam an energy drink down as soon as you feel a hit coming - make sure the drink contains caffeine and taurine (1000mg or more).


Quote:
...I have headache two or three times a day that aren't as severe but still keeps me from working...

Strong coffee can help with these too.


Quote:
How can I cope?

This may sound harsh, but it won't kill you and you learn to deal and live with it.


Quote:
What is there to do?

Get to the neuro. Meanwhile read, read, read and ask, ask, ask - you probably will have to educate your doc!


Quote:
When will this stop?!

Unfortunately nobody knows.

Oliver

Title: Re: Is this the right place for me?
Post by Rolomatic on Dec 18th, 2008 at 12:47pm

gizmo wrote on Dec 18th, 2008 at 12:21pm:

Quote:
When will this stop?!

Unfortunately nobody knows.

Oliver


Honesty, what a lackluster concept… Rolo... ;)

Title: Re: Is this the right place for me?
Post by gizmo on Dec 18th, 2008 at 12:51pm

Quote:
Honesty, what a lackluster concept… Rolo... ;)


Better a lackluster concept than no concept at all  ;)

Oliver

Title: Re: Is this the right place for me?
Post by Scandinavian on Dec 18th, 2008 at 1:41pm
Thanks so much for your answers. I will definitely read more about CH to get a better understanding and you've also encouraged me to get a better doctor!

I will for sure keep drinking strong coffee - I had that one figured out already. ;)

Thanks for your support!

//S

Title: Re: Is this the right place for me?
Post by Bob_Johnson on Dec 18th, 2008 at 2:57pm
If you live in an urban area where you have a choice of experts--how excellent! Many of us, however, live in small communities where specialists are not available and we have learned how to educate our doctor so that we can get needed care. If you need this approach, let's us know so that we can send you medical information in a form which any good physician will accept.


Title: Re: Is this the right place for me?
Post by maalstroom on Dec 18th, 2008 at 3:22pm
Hei och välkommen!

I don't know of any good Swedish forum, and Google didn't come up with a lot but I do know of a Danish:  

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But I'd advice you to look around here for there is many to learn.

Hei då, Pascal.

Title: Re: Is this the right place for me?
Post by Scandinavian on Dec 19th, 2008 at 8:32am
Hi everyone,

I've been doing some research and there's Swedish group called Hortonföreningen i Sverige with the follwing website:

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There's also a network where members can support eachother, just like this one, with just about over 100 members at this time.

I feel so positive today, I'm sure that I will learn to cope with Mr Horton. I acctually woke up without headache (normally it hits me about 5 am), drank a lot of strong coffee before lunch and I'm no totally free of pain since a few hours back. What a relief.

I will figure this out! I will get better!! I have to.

//S


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