Hi I'm new to the site my name is Leah from the uk and was told by my doc this morning I have cluster headaches I'm a little shocked by not overly surprised as it all makes sense now the pain on my right side of my head in my ear in my jaw in my neck down my arm. I find it unfair to be honest I'm healthy and active and hardly ever ill but this has well and truly knocked me off my feet I can't believe the pain sometimes I want to take my brain out and do something that will stop the pain.
Oh dear I've rambled lol just wanted to say I'm glad I've found this site and any hints and tips will be gratfully welcomed

Hi Leah and Welcome.  I am sorry you had to seek us out but glad you found us.

Please check into O2 for treatment of your CH see the Oxygen info link to the left or check this link START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Here are some tips but before using any check with your Doc to make sure nothing will adversely affect the medications you are already on.

4-Way Nasal spray or Dristan 12 Hour Nasal Spray helps with the annoying congestion.

Taurine and Caffeine drinks (RedBull if you like it) to help prevent a hit when you feel one starting.

Melatonin or an Allergy pill at night before bed to help avoid night time hits.

The herb Kudzu has helped a few as a prevent.   

Deep breathing through the milder hits can help too.

Hot/Cold Compresses Depending on your preference can help as well.

PF Wishes to You!

You have a fine support group in the UK which you might explore. They can be a resource in dealing with your health system.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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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]
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And the PDF file, below....

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Welcome to the board. 32 years of the beast and I find a 2 pronged approach to be the most effective for me.

1: A good prevent. A med I take daily while on cycle to reduce how many hits I get. I use lithium at 1200 mg a day, blocks 60-70% of my hits. Other popular prevents are verapamil and topomax.

2: A good abortive. As previously mentioned, read the 02 link on the left. It should be your first line abortive. I went from 90 minute attacks to a 6-10 minute abort time using oxygen. Cheap, effective, no side effects, tough combo to beat.

In a pinch I use imitrex injectables. There is a "feeling" on the board that triptans actually increase the length of your cycles. No hard evidence, but many avoid them completely. Imitrex nasal sprays work for many, I haven't tried them. Do not let them give you imitrex pills, they generally take too long to be absorbed to have any positive effect for CH'ers.

Ginger gave you a great list of tried and true treatments that have worked for many.

Joe

Hi thanks for all the info the main thing I'm concerned about if am I going to suffer with these ch for the rest of my life  :'(

There is no real way to know that for sure one way or the other Leah.  Just take one day at a time you are stronger than you think, having CH will teach you that if nothing else.

We are hear for you, stay strong!
[smiley=hug.gif]

If it is CH...yeah...it's with you for life. You'll have short remissions, and some really long ones...but he'll always find his way back. The cool thing is you will now meet a group of life long friends on this board....that you'll never have to explain CH to. [smiley=hug.gif]

Joe

Thank u means a lot to know there are ppl about who understand and don't just say aww u have a headache take a painkiller u will be fine lol makes me want to brain them x

Leah wrote on Sep 6^th, 2010 at 9:47am:

Thank u means a lot to know there are ppl about who understand and don't just say aww u have a headache take a painkiller u will be fine lol makes me want to brain them x

;D  We've all been there and have the T-shirt  ;D
Hang in there you will probably hear a lot more stupid comments like that over the years.

You just need to relax, stop smoking, lose 10 pounds, take an aspirin, my friend stopped drinking coke and her headaches stopped, go lay down.....yeah...sadly you'll hear a million more! Smile, nod, move on! ;D

Joe

Guiseppi wrote on Sep 6^th, 2010 at 10:10am:

You just need to relax, stop smoking, lose 10 pounds, take an aspirin, my friend stopped drinking coke and her headaches stopped, go lay down.....yeah...sadly you'll hear a million more! Smile, nod, move on! ;D Joe

lol yeah i heard that already stop smoking hmmm dont think that may help well it might but think giving up may cause me more of a headache lol i also heard try and relax more !!!

You might have them for life, but my bet is that since you've come to the right place for tips'n tricks here they'll become much easier to deal with.

It's not uncommon for the remissions to eventually become longer and longer (after several years of predictability), and I've seen plenty of anecdotes about CH often burning out by the time a person is elderly.

What is really going to help though will be your pursuit of effective treatments (such as the O2 mentioned above).

And if medical science continues to advance, well THAT'LL be a good thing!  :)

Personally I've had CH for 30+ years and am now experiencing remissions of up to 7 years! (Or did I thwart an entire episode with the use of RC seeds? Not at all certain, but more on that clusterbuster subject below).

Also for 2 out of my past 3 episodes I have been able to prevent or abort every single attack. This sort of success isn't likely possible for everyone, but I hope it serves as encouragement regarding what can be achieved with extreme diligence, some luck, a deep distrust and disrespect for the medical profession, and a determination to take personal control over your treatment program.

On the flip side I have found that my episodes have become longer  - now more like 2.5 months long instead of the original one month. Yes some people believe imitrex (imigran) makes episodes last longer, but I have a little different perspective on this because my episodes had doubled in length before imitrex was even invented! I suspect that either episodes can tend to become longer "naturally", or that other drugs besides imitrex (like prednisone) can make 'em last longer.

Meanwhile some folks have been reporting that they've averted entire episodes with the approach focused on over at clusterbusters.com and it's forum. Here's a video talk on that subject by one of our fellow CH'ers: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Hi Leah

It's good to meet you but I'm sorry that is has to be because of this horror.

I got mine in 1969 when I was 23 and they lasted until 1991. Long remissions can happen and I know how lucky I've been. One theory is that as an epileptic too, I've takens a pile of different drugs over the years and that may have had something to do with it. There is no way to know.

Anyway, some CHers have had long remissions and no doubt some have left this board because of it.

In any event you'll find tons of good information here. Let us know how it's going.

Charlie

Welcome Leah!

You've just found all the ammunition you could ever require to fight the beast, except of course a cure, but hopefully that's not too far away either.
Good luck with your journey, the people here are fantastic and some of the toughest around! You are in good company here, if you cant find the answer's here, just ask and we will try our best to help.
                           Regards Shell [smiley=smiley.gif]