G'day all!

Im Sarlu, 29 and just found out Im having Cluster Headaches (stupid things). Im so relieved to have found this place as Im so entirely over trying to explain to people, docs in particular what exactly is happening and its nice to come somewhere and have people just understand!!

Ive just come out of hospital after numerous tests and they kindly delivered the message that these things are what are causing my distress around 12.30am night after night. This is my first bout of them, and Im hoping that I settle down a bit now for a while and it just goes away? (fat chance) lol.

anyways, just wanted to say hi and see ya round hopefully!

- Sarlu

Hello Sarlu,

Nice to meet you and sad to welcome you to the site!
SOmething oddly comforting in knowing when they're gonna hit, isn't it? 1230am is not a happy time for them to come, however.

so, you mentioned being diagnosed if i'm not mistaken?

what are your treatment approaches to the pain so far? please dont tell me you just 'ride them out' cause there are so many things than can be done to make them bareable.

welcome, my name is Martin, and good luck.  Wish you the best, and hope for a pain free night!

Glad that you found us. There is much learning to be had here from several thousand folks who share your new "friend".

Might explore the buttons, left, starting with the OUCH button and multiple internal links. Sending along a couple of links to get you started but feel free to ask all the questions you wish.
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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 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]
=========
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
======

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)
 
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
============================================

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
Robbins Headache Clinic
1535 Lake Cook Rd.
Suite 506
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.
================================

Your mention of limited docs: many of us have had to educate our docs so that they can give us good care. If you are blessed with an open minded soul, we can send medical literature which you can give to the doc, the long article at the top, would be a good starting point.

Having a headache specialist would, of course, be first choice but they are not readily available to many. If you want to explore finding a specialist, get back for advice on seeking.

Welcome Sarlu!

I am sorry that you have to deal with these headaches, but you have come to the right place to get info, tips, and support.  The more you describe your situation here, the more people can help support you.  I am assuming you have a headaches specialist.

Good luck!
Joni

G'Day Mate
Good to have another Aussie on board, there's only one bloke you have to watch out for here & that's Aussie Brian he has this penchant for copious amounts of beer.
Go the Eagles
Cheers
Barry

Wow, thanks for the welcomes, information and questions! I will attempt to answer them!

Martin - yes, strangely comforting yet scary too not knowing when I went to bed if I was going to be rudely awoken by the monster of the deep again. The diagnosis was a longish sort of story so graba  drink and popcorn lol.

I'd been having these things (now know they are CH) for a few days repeatedly, so I went to my GP on Nov 19, and tried to explain it to him and he told me they were just caused by stress. I shrugged my shoulders and promised to try to relax and he told me if they continued for more than a week to come back. Anyways, time got away, and i kept having them, but just kept taking some advil and putting up with it. Then, last week, I had one earlier in the evening so i tried to take some pain killers but this time it was a lot worse and my face went all droopy and my partner came home and found me pretty non responsive and I was dribbling and completly out of it. She called an ambulance and at the hospital they did a Head CT which showed my brain was tight, and then and MRI showed more detail of it not being so tight but sitting low. An eye review, was semi ok and when able I had to explain over and over to doctors what I have been experiencing. They then came back to me with this diagnosis. This was to cut a very long story short. Obviously Ive left quite a bit out , but thats the general gist..lol. They have given me prednisalone and erm..Imigran, and some appointments. I dont really know much about all of this stuff, so its been so much of a relief to come and read so much helpful information. I often feel like the back of my eyeball is bruised after, is that normal? Do others feel that?

Bob - Thankyou for that info!! i sure am going to print that and take it to my doc. Im sure he will find it helpful! Headache docs..do you mean neurologists? I have epilepsy, so I am familiar with Neuro's..I found it interesting that topomax can be used to treat these, and I am on it, but Im still getting them!

Joni - Thankyou for the welcome, I asked bob about the specialist/neuro..getting there!

Barry - Three words - Carn the Crows!!!! :)

again, thanks so much guys for your support and welcomes!

Priceless!

Cheers  :)

I didn't catch that you were not US when I wrote so let me modify my suggestion re. docs.

The majority of neurologists receive little schooling and/or experience in dealing with complex headache disorders. The general run of neurologists in the U.S. are a deep source of disappointment, if the comments of our members reflect the broader market. So, the trick is to seek a neurologist who has the skills you need. The following contains techniques which you can use, even as you cannot gets lists of doc mentioned.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. (edited out sections that don't apply to you.)

Prednisone and Imigran are both useful CH medications.

Is Imigran in an injection?  Thats the quickest way to deal with the pain.  I've been given pill forms but they take long to kick in; the pain usually leaves on its own.

Re: Bruised Eyeball. Very common for people to experience after effects.  Usually the severity of the after effects coincides with the severity of the cluster.

and Neurologist  very different  from a headache specialist.

glad to help and good luck

Barry_T_Coles wrote on Dec 8^th, 2009 at 6:43pm:

...there's only one bloke you have to watch out for here...

Now isn't Bazz the nicest bloke saying you have to look out for me? He's right, too, because we all look out for each other here and while I'm not sure what a penchant for beer is I certainly have a fridge and plenty of Eskies should you need a place to store your own supplies.

Go the mighty Maroons and any team playing against the All Blacks!