Hi, all
   
First post here.
While I haven't officially been diagnosed, I'm pretty sure that it is CH that I suffer from.
The attacks started when I was in my mid-20's.  I get my main bout in late November/Early December, and (usually) a lesser bout in July.  I thought I'd got lucky this year until 2 nights ago!!!

Many of the symptoms match perfectly, a bout can last anything from 2-4 weeks for me.  I get one bout nightly...usually starting at 3-4am, sometimes earlier, although always at the same time each night during a bout).  I am a complete night owl, but, even so, when I am already asleep, I get woken from the pain.

The blocked nose/slight nasal discharge is also present, as well as pain behind my eyes.  Also, the vein on the side of the attack about 1cm obove the eye becomes pronounced,  above I also get secondary pain in my teeth sometimes.  The one thing I don't *think* I get is the drooping eyelid.

I have been tried with a number of pain killers - Co-Codamol 30/500 has a very SLIGHT effect, no other pain killer has any effect at all....nor do migrane tablets.

The one thing that seems to have some effect in reducing the length and ferocity of attacks is Cetirizine Dihydrochloride, an anti-histimine, although I'm not aware that this is documented anywhere.  Feel free to correct me if I'm wrong.

I am looking for any tips that can help during a bout.  (although, if possible, tips that don't cost a whole lot of money as I'm not rich).

I shall share some of my own....

For minor or moderate stages, putting my head above a flue of hot air (calor gas fire, toaster etc) gives some mild relief (be VERY careful if you attempt this).  Also, in the very mild stages, cupping my hand over my nose & mouth gives some mild relief.

Now for the unusual bit...when I first went to the doctor, I was told it was likely that I was suffering from migranes.  I was told to note down what I ate, drank etc. to try to establish a pattern.

I went further as no ccorrelation seemed to be forthcoming.
I made a Calc file (Like Excel, but, with good old pull down menus rather than that annoying ribbon thing), and jotted down anything and everything.

Eventually, I spotted one correlation (which the subsequent years have borne out).  Weather related.  Actual weather type, or tempreature appeared to make no difference (although changes in tempreature eg. going from a cold room to a warm one or vice versa seemed to make things worse), but, one thing, particularly during the November/December bout seemed to make a difference - wind DIRECTION.

An easterly or north easterly direction greatly reduced or even killed a bout (I got off really lightly last Nov/Dec).  A westerly or south westerly over the bout period meant that I was in for a bad/lengthy bout.

This is certainly something I haven't seen documented anywhere.  Sadly, here in South Wales, UK, the prevailing wind direction is south westerly.

Anyway, any tips etc. would be greatly appreciated

Welcome to the board! We have several members who can predict the weather based on their attacks. Extreme heat and extreme cold are common emergency treatments. Like you, most have found pain relievers to be a waste of time. And the pain radiating to the jaw, when you see the trigeminal nerve path, you'll understand the "toothache" pain.

That being said, you need to talk to your doc about a 2 pronged attack on these. A good prevent and a good abortive. Verapamil, Lithium and Topomax are all popular prevents. A med you take daily, while in cycle, to lessen the number and intensity of your attacks. Prednisone, a steroid, is often used as a transitional therapy, but for cycles as short as yours the doc may consider using it as a prevent.

For abortives, please read the oxygen info link on the left. Turned my 90 minute attacks into 6-8 minute attacks. A real life changer for me. Imitrex injectables are  a life saver for me when I get caught away from the oxygen.

Nigel mentioned energy drinks. Chugged at the first sign of an attack many can abort a full attack or at least reduce the intensity for you. Another great emergency abort if I'm caught away from my 02.

Welcome to the board, you have much reading to do. There is too much available to simply grin and bear the pain!

Joe

There is an abundance of good material here which has been decently well established re. validity/effectiveness. Explore buttons, left, starting with OUCH; section on tips at the top of this page; and throwing a couple of medical pieces.

A good grounding will give you some security and comfort as well as helping to avoid wandering in the dark.
=====




Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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 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)
 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
============================================

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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
60 Revere Dr, Suite 330
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.
[Explore the whole site.]

Hey there Jangly Mark.  Caffeine is very good for most/many of us.  People claim the taurine added to the redbull is helpful.  I get good results with coffee, tea and soda too as long as I take them before or right at the first little feeling that an attack is coming on.  Caffeine and Oxygen are probably the 2 most successful simple things the majority here use.

There are many threads here to read.  We are all essentially the same so feel free to read other's posts and assume they are talking to you.  You aren't officially diagnosed I guess so try the stuff that works for us and if it helps then that is another clue pointing to CH.  you can take the cluster quiz on this site and figure it out as well as your doc who doesn't know what you're talking about anyway.  You said they started in your 20's? how old are you now?  If this just started then you should get a better diagnosis, if you have had them for ten years or more just like you described then it is sounding like CH to me.

--Shaggy

Hello jangly.

The very first thing I do when they start coming on is go to the bathroom(nice and dark preferably) and relieve myself(both ways) regardless of whether I think I have to go or not. For me, it relieves some of those pressures inside that seem to build up during the course of a headache. Very cheap too!

Quote:


Never thought of having a dump to help with an attack.
Sorry that's a bit brash isn't it 

Mark the red bull thing has really helped me with shadows. I've only had one cycle so far and have not tried it on a proper hit yet, but I've been getting shadows 4-6 times a day ...you know those mild but annoying staby sort of head aches that just niggle at you ,twitchy eye and burning sensation down the side of your neck ,all the sort of stuff you feel just before a attack . The red bull has cleared my head of those for about 4-5 hours without fail so it is now my best friend.

imigran injections :- thay are not to bad ,thay come in an eppi pen sort of thing , no visible needle  you just press this plastic pen thing against your thie and press the release button on the top , it's all sprung loaded so theres no fiddling about no careful inserting of needles and the only time you see the needle is when you take it out again . it's so simple you could even do it in the dark so pleas don't shy away from trying it cos it really dose work and I've aborted attacks with it in less than 3 minuets , although that dose depend on how strong the attack is.

God bless
Nigel

Hello and welcome!

I agree with you totally on the heat thing!  Couldn't imagine having anything cold on my head during a hit, and find the cold wind a bit of a trigger for shadows too.

When I get hit (always at night) the first thing I do is get my hot water bottle (in a cover) that I have already half prepared  (in cylce I always boil the kettle before I go to bed and put the h/w bottle next to it - nothing worse than waiting around for the kettle to boil if the water is cold from the tap) and then suck on the ol' faithful 02.  Don't really like to take the drugs, so heat and 02 are my arsenal.

Also totally understand the sore scalp thing, burning face sensation... 

Wishin you all the best,

Kate

Lettucehead wrote on Aug 3^rd, 2010 at 9:24pm:


Yes, I will agree to this. Also, stroking my beard or mustache on the affected side can be a trigger.

shaggyparasol wrote on Aug 5^th, 2010 at 6:58pm:


I guess you could say that CH hits scare the crap or piss out of us! 

Me too, #1, yes every time, #2, not so much.   

Kate in Oz wrote on Aug 5^th, 2010 at 7:20pm:


Having it on your mind is one thing...but having a CH hit and an URGENT need to run to the privy is a completely different beast. 

Kate in Oz wrote on Aug 5^th, 2010 at 7:43pm:

Cruel, yes I can agree with that.  No room for tears though not during a hit...makes it worse and if you are already on the loo then you don't have a lot of excess liquid left anyway 

Quote:


Great Idea!  And I wouldn't worry about any skin of anyones nose with regards to this, they won't see your changes unless they use the skin and the code.

Speaking of the skin add on and code...Links via pm please!  Wish I could do this at work too!!!   

I've had headaches 22 yrs.

This is my routine:

1. Remain calm as possible.

2.Empty my bladder

3.Then I grab an ice pack and wrap it with a thin. clean(no strong scents) dish towel, wrap it once or twice(depends on preferrence that day)

4.Look for dark or dimmly lit room.(cool bathroom usually everywhere)

5.Get comfortable, gently apply ice pack to lips, nose, cheek bone, forehead, temple, top of head and back of neck alternating to areas that feel good at that moment.

6.Keep remaining calm. I try not to let what other people might be thinking bother me. I try not to let my thoughts bother me. I try not to think any thoughts at all. If I cant stop thinking, I start thinking about all the people here that suffer beside me.

I avoid drugs. I use imitrex to stop my head aches, that works about 85% of the time for me. (at company parties,christmas,thanksgiving,driving emergencies, at the movies, etc.)

My wife sometimes "tickles" my back, strange but true.(works for me)

Explain to your boss or anyone else who may need to know, whats going on as soon as you can, they usually do understand, and may provide you some space to deal with these things.

When driving I pull over as soon as I can, big parking lots(believe it or not) provide privacy. Adjust my schedule. And deal with headache the best I can.
Im new to this site and to posting, so I hope this isnt to long. I also have not been able to try some things suggested here yet, but plan to soon.
Continue seeing your doctor. And I pray you find your routine and all goes well. good luck. 
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