Howdy All,

My name is Adrian (call me Ade) and I'm a late thirties guy from the UK.

I've just found this site and thought I'd register (the UK equivalent requires me to pay to register - nuts to that!).

I've suffered with ECH for 20 years. The first five years undiagnosed (absolute hell), the next five years misdiagnosed as migraine(*sheer* absolute hell - *very* nearly broke me), and the last 10 years on Imigran/ Sumatriptan (phew, relief!).

My usual cycle is between late Dec to mid-March, with a remission period of 2-4 years.

I'm currently mid-way through a cluster (first time they've happened this early) and boy, have I been through the mill this week. Eight attacks over the last 48 hours - my thighs are like pin-cushions!

Anyhoo, I'm hoping that this recent increase in frequency heralds the end of the current cluster, but no such luck - two more attacks today:(

I tried the ol' steroid treatment for the first time at the beginning of this cluster - bad news was that they made me lose my appetite and left me unable to sleep (starting at 50mg/ day) - this didn't exactly lighten my mood (anybody else experience this?) Here's hoping that I've only a few weeks left.

I'll continue to pop back and offer help/ advice/ sympathies as and when I can - It's a relief to finally find a board with people who have experienced what I have gone through and can understand what it's like to live with CH.

Take care all,

Ade.

welcome ade
this is a wonderful site where you can share your pain and effects with people that know and care.
do you use o2, if not someone more educated than me will fill you in. for me it is a first line of defense as with many other here.
write often.

Thanks for the welcome :)

I haven't gone down the O2 route. For me, one of the most painful aspects of my attacks is the very act of breathing (breathing in is worst). I get by ok-ish on Sumatriptan, although the side effects (tiredness, lack of concentration) can be a bit tough to deal with at times (esp. when at work). I also think that Imigran/ Sumatriptan is a tad more portable than dragging round and O2 cylinder.

Thanks for the reply,

Ade.

wrote on Nov 26^th, 2008 at 6:58pm:

I tried the ol' steroid treatment for the first time at the beginning of this cluster - bad news was that they made me lose my appetite and left me unable to sleep (starting at 50mg/ day) - this didn't exactly lighten my mood (anybody else experience this?) Here's hoping that I've only a few weeks left. .

Hi Ade..

Welcome to the site and hope you get lots of helpful information and support.

As far as preds go,  I have had mixed success.   Loss of sleep?  You bet.  Cranky?   I'm a bitch on wheels on preds.   Now the 'no appetite 'thing?  That is where we differ-  I gained about 20 lbs during my last pred taper (  although some was probably due to verapamil too)  I could eat anything in site and in mass quantities.  But , the eating didn't actually seem to be triggered by hunger pangs,  it was more like this bottomless pit thing.  

At any rate.. Glad you found us and wishing you PF times ahead.

Kelly

Hi Mezza,

Thanks for the reply - i do seem to suffer a bit with side effects...

"..wishing you PF times ahead." - Amen to that! (and I'm an aethist!!)

Welcome to the board! Another vote for oxygen here. I've gotten creative at making the 02 tanks portable. On cycle they're always within sight! Worked wonders for me.

Do you use any kind of a preventative medication besides the prednisone? Pred is 100% effective for me but long term use can produce nasty side effects. Lithium, vereapamil and topomax are common prevents, the idea is to reduce the number and intensity of your attacks. Might be worth talking to the doc about.

Glad you found us, hope we can help you.

Guiseppi

Hi Guiseppi,

I've tried vereapamil (that the steroids, right?), but the side effects (for me: loss of appetite, unable to sleep, depression) were too much to handle.

I'm back at work today. I had a 2 day absence after suffering 8 attacks over Mon/ Tues - still a little shakey - but I'll pull through eventually.

Thanks again folks for the kind words and support.

Peace 'n' ting,

Ade.

Awight Ade,

Hope you get more help whilst you are here, this place is a haven for CH sufferes and there are alot of experienced people offering great advice!!

PFD TO ALL

Si!

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the best 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 or END 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 or END PRINTPAGE
(Thanks to "cluster" for link.)

hi ade, sorry you have CH, can i make  a suggestion, maybe you would like to give the UK helpline a call, won't cost you anything as they weill phone you back

the number is

01646 651 979, they can give you info on what meds could be useful and nuro advice for the UK

it's up to you???? (you don't need to be a member of OUCH UK to phone them :-?)


Sandra

Hi Ade,

Good to see another Brit here, although I would not wish the reason you are here on anyone.

Hi from another Brit.

[The OUCH UK helpline is worth contacting and you do not need to be a member of OUCH to do so]

wrote on Nov 27^th, 2008 at 5:03am:

Hi Guiseppi, I've tried vereapamil (that the steroids, right?), but the side effects (for me: loss of appetite, unable to sleep, depression) were too much to handle. Ade.

I noticed that Ade is an Ex-Member, but for the sake of completeness, Verapamil is a Calcium Channel Blocker that is otherwise used to regulate blood pressure....

Ray

ex??

How odd. No-one was mean.

Perhaps Ade misunderstood De's advice and thought it was "take what you want and leave"??

W

pubgirl wrote on Nov 29^th, 2008 at 10:14pm:

ex?? How odd. No-one was mean. Perhaps Ade misunderstood De's advice and thought it was "take what you want and leave"?? W

sorry, that should have said Den's advice

pubgirl wrote on Nov 29^th, 2008 at 10:15pm:

pubgirl wrote on Nov 29th, 2008 at 10:14pm: ex?? How odd. No-one was mean. Perhaps Ade misunderstood De's advice and thought it was "take what you want and leave"?? W sorry, that should have said Den's advice

nope, no one was mean and he was offered plenty of advice and help Wendy!!! :-/