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 :)

hay mark

sorry if you saw my post just now and then it disappeared , having some issues with my pc for some reason .

any way what i posted was

Try red bull or similar , chug a can right at the start of a attack , it can reduce the pain or even stop the attack.

do try and get your gp to refer you to a headache specialist , most gp's haven't even herd of ch let alone know how to treat it.

antihistamines: some people on here use them to stop the night time attacks.

weather : lots of people report weather as being a trigger mainly due to a change in barometric pressure, like you get when it's windy and if your prevailing wind is south westerly then it is most likely to be blowing that way when you get an attack.

Hope you find some answers soon dude

God bless

Nigel

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

Hey Mark. You didn't say if your doc was a headache specialist or even a neuro. A good specialist can help you sort out all of the different kinds of headache pain, some of which mimic clusters (like occular migraines) so finding one could be really helpful. Also, you said something that makes me wonder:


Quote:

Also, in the very mild stages, cupping my hand over my nose & mouth gives some mild relief.

This is counter intuitive to clusters. It seems to me you would be increasing the amount of CO2 in your bloodstream rather than increasing the amount of O2 which is the primary abortive of choice around here. And while I've heard of extreme cold as an abortive, extreme heat is a new one to me.

I'm not saying you do not have clusters, just suggesting you make absolutely sure with a good headache specialist. Blessings. lance

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: 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]
====

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
60 Revere Dr, Suite 330
Northbrook, Ill.60062

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

---

Thanks everyone for your replies.

Re-cupping my mouth...this offers very mild relief for very mild attacks.  It does appear that heat helps with me....heat concentrated on the sinus area/the eye area does help somewhat.  Not in a full on attack, but, a mild attack certainly.  Also in a mild attack, a bowl of boiling water with a carvol and towel over my head gives some relief.  Cold (or at least damp cold) makes things worse.  If I'm somewhere with a slight draught/breeze, that can really play on it.

As can a simple thing like running my hand through my hair on the affected side.  It wo9uld appear that even in the mildest of attacks, my nerves/nerve endings are on the highest alert.

I mentioned wind direction....the East/Northeasterly wind that helps, is actually one of the coldest directions in the winter, but, although the tempreature is that much lower, it's certainly a much cripser, drier cold.

I saw barometic pressure mentioned....that could possibly be a clue.  The E/NE wind mostly happens when there is an anti-cyclonic 'block' here.  Hmmm....maybe I should look into that more.

I have already read up on many of the treatments you mentioned...for the most part, I'm really not sure.

Certainly anything with needles is out.  I absolutely HATE needles at the best of times, also, I am WAY too clumsy to administrate anything like that myself.

Other preventatives/abortives....hmmm, maybe.  That said, I have other (unreleated) health issues, and have read that many of these should be done only under close supervision.

The oxygen thing does indeed interest me, though.  Would I be able to get that on the NHS?

As far as my Doctor goes, that's a little more complex.  I am registered with a 'medical centre'.  That means 4 GPs in the same building.  You can make an appointment and request a GP.  If you went to open surgery, it's pot luck who you get.

I adopted one GP that I thought was excellent as my GP, and always made appointments with him.

He is the guy that put me onto anti-histamines.  He never referred to 'cluster headaches' himself, so don't know whether he had an idea (I suspect he did), or whether it was a case of 'ok...let's try this and see if it works'.

Sadly, he no longer works...so, I'm back to pot luck.  THe doctor I saw in open surgery yesterday was absolutely mystified that I should want anti-histamines for headaches.  Gave them to me with an 'well...if that's what you get prescribed...' type attitude.  You could almost see a cartoon question mark above her head.

I shall try the red bull thing...I can't really see that working, but, like to go into things with an open mind, so, shall give it a try.

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 :)

I'm now 37.  I never thought of caffeine.  Yeah...I'm working my way through the threads, and had read a fair bit before coming here.  I like to be well read on things.  (I am very politically active, so, I guess it stems from that).

I already took the 18 question cluster quiz (did that before I registered), and that very much pointed to CH.

Thanks again for the responses :)

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!

Jangly Mark wrote on Aug 3^rd, 2010 at 12:08pm:

The oxygen thing does indeed interest me, though.  Would I be able to get that on the NHS?

There is info about this on the OUCH UK web site, including the NHS form for getting oxygen. Have a look at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

There are people from the UK here who will be able to give you more detailed advice.


Jangly Mark wrote on Aug 3^rd, 2010 at 12:08pm:

I shall try the red bull thing...I can't really see that working, but, like to go into things with an open mind, so, shall give it a try.

The Red Bull trick certainly does work for quite a few people. You can use anything that has the combination of taurine / caffeine. Just drink a can quickly when you feel the CH starting and it can help reduce the length and intensity of the attack.

I've got cans around the house, in the car, etc, so I can get hold of it quick.

Quote:

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!

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

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

Hi Jangly and Welcome.

Read all you can here and ask what ever questions you have we will do our best to answer them and if we can't we'll send you truckin back to your Doc.  Last but certainly not least O2 O2 O2 O2 O2 and did I mention O2 ?   ;)

PF days and nights to you!

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

Kate in Oz wrote on Aug 3^rd, 2010 at 9:13pm:

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

Hi Jangly Mike!
Welcome!

I, too, know understand the sore scalp thing.  During cycle, my scalp on the side of the CH will become hypersensitive - even to the point of having to brush my hair very gingerly...

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

Kate in Oz wrote on Aug 3rd, 2010 at 9:13pm: Also totally understand the sore scalp thing, burning face sensation...  Hi Jangly Mike! Welcome! I, too, know understand the sore scalp thing.  During cycle, my scalp on the side of the CH will become hypersensitive - even to the point of having to brush my hair very gingerly...

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

The Shaggy says.....

Scalp sore but there is always a point on the top of my head that if I press just right the pain of an attack will decrease.  Sometimes the spot changes a bit, but I always search for it and apply pressure.  Takes the kips down a level or 2, not a cure, but it helps and takes my mind off the pain.

Bathroom break???? yes please, everytime.  I have spent hours in the mens room sitting on the throne hunched over holding my head.  Seems every attack requires a trip and a dump. ;)  Good, thorough ones too (sorry for the detail :D)

--Shaggy

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

The Shaggy says..... Bathroom break???? yes please, everytime.  I have spent hours in the mens room sitting on the throne hunched over holding my head.  Seems every attack requires a trip and a dump. ;)  Good, thorough ones too (sorry for the detail :D) --Shaggy

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.   ::)

mmmm.... me not so much.  Would have to say that is the last thing on my mind!  When I wake with a hit I'm in such a rush to get myself sorted (with h/w bottle) before the pain amps up .. going to the toilet has never been an issue  ;)

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

mmmm.... me not so much.  Would have to say that is the last thing on my mind!  When I wake with a hit I'm in such a rush to get myself sorted (with h/w bottle) before the pain amps up .. going to the toilet has never been an issue  ;)

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.  ;)

Thankfully I can't imagine how that would be  :)  that's just cruel yes?  I think if that happened to me I'd be sitting on the loo in tears.

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

Thankfully I can't imagine how that would be  :)  that's just cruel yes?  I think if that happened to me I'd be sitting on the loo in tears.

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  ;D

Thanks again for the replies :)

I tried the caffeine thing, and it didn't really do much for me.....

The hot water bottle thing did help a little, though...or a version of....I have a bean bag type thing that you put in the microwave....never thought it would be useful with CH.

Not had a good day today.  I had my first ever daytime attack :(  (In over 10 years, every single attach has been at night) I've also had shadows all day (still have now at nearly 1am). 

I'm not expecting a good night tonight :(

I'm going to ring up the doctor in the morning and see if I can get one of those oxygen mask things.  I really am at my wits end.  (I always get a bit down when I get CH).

One question, though, ould it help if I qwoke up and an attack was already underway?

Eithor way, if it works (and a number of you attest to the fact that it dows), it will certainly help with shadows and if I get any further daytime attacks.

One last thing, like many of you, I have found that dark helps.  Even for shadows, bright light does not help (I'm a but that way even when I don't get CH, but, I guess that's just me).

(I hope I'm not stepping on anyone's toes here, but...) for this reason, I am 'skinning' this board (user end) so that the background is navy blue and the input boxes are dark blue.

It's by no means finished yet, I have a few things to work out (the quotes still have a white background, the border is still white), and I am yet to make and upload a negative/reverse colour image of the forum logo.

That said, if anyone wants the code (as it is - a work in progress), feel free to PM me.

(You will need the Firefox add-on, 'Stylish' for it to work).

I realise that a lot of work has been put into this site, and hope I'm not putting anyone's nose out of joint by doing this.

Quote:

(I hope I'm not stepping on anyone's toes here, but...) for this reason, I am 'skinning' this board (user end) so that the background is navy blue and the input boxes are dark blue. It's by no means finished yet, I have a few things to work out (the quotes still have a white background, the border is still white), and I am yet to make and upload a negative/reverse colour image of the forum logo. That said, if anyone wants the code (as it is - a work in progress), feel free to PM me. (You will need the Firefox add-on, 'Stylish' for it to work). I realise that a lot of work has been put into this site, and hope I'm not putting anyone's nose out of joint by doing this.

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!!!   8-)

What up Jangly?  If you are a nighttimer then caffeine won't be your best friend.  Try the melatonin regime that people use here.  Helps the sleep and tends to keep the attacks at bay.

If you are dabbling in the daytime hits, then make sure you try the caffeine a few times as prescribed before writing it off.  Right at the first little twinge of the oncoming attack.  If coffee or tea hasn't worked try the taurine add ons in the energy drinks or add taurine to your caffinated beverage.  If for some reason the caffeine has some other negative effects that are worse than the CH, then disregard the suggestion. 

Oxygen results have been best when used right away.  If you wake up with a rager, you are already late and the O2 may take longer to work.  Others will have more info and experiences for you on that. ;)

Hope you had a decent night.

--Shaggy

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. 
Back to top   

Thanks again for all your replies.
Yesterday and last night was pure hell.
Seems to have calmed down a bit today, so, hopefully this will be a shortish bout. (Fingers crossed).

I've been back to the doctor today.  I made sure that I described in quite some detail the exact nature of things, and made sure I used the words 'cluster headaches'.

She said that while I haven't officially been diagnosed, everything did indeed seem to fit.  She also said that she couldn't prescribe me the oxygen mask, even if she wanted to (which was what I wanted), but, she has referred me to a neurologist.

In the meantime, she's given me 'sumatriptan nasal spray' (10mg) for the pain, but, only 2 doses.  Gah.

Don't know how effective that will be (and some of the potential side effects are scary), but, I'll give it a shot next time I get a full on attack.

One question...without anything more than is really a shadow, I've had a lot of gloop come from my sinus/left nostril.

I know it's easy to get any kind of sinus complaint mixed up with CH, but, if I have developed a sinus infection or similar on top of the CH, could that make the CH worse?

The CH beast is a thing without humor and a sinus infection, cold or flu can irritate it.  All of the above would help to put pressure on the nerves in your head associated with CH.

Get tested or take antibiotics in case it is an infection, but keep in mind you wouldn't be the 1st to be told it's not CH or migraines it's a sinus infection.  I went down this road and it got ugly, went through three rounds of antibiotics and Dr finally realized it was not an infection.   In the mean time the antibiotics irritated the CH beast and things got a whole lot worse from there.  It was two years before I was finally diagnosed with CH and finally got help for it.

Hi

Glad you found this board. I have been having these headaches since my early teens only recently having been diagnosed. I use imitrex and sometimes red bull or monster if I catch it early enough. You should definitely check out oxygen as it is much more cost effective than imitrex which I am trying to save for emergencies when I cant have oxygen. I really hope you can find a method of relief. as this malady is hard to live with sometimes keep your head up and try not to get to down about it because like every other trying thing in life this too will pass :)

Joe   

MELATONIN?

The sumatriptan sort of works.
It does indeed kill (or almost kill) the CH ater about 15/20 minutes of taking it.

Two things, though...firstly, I am now getting multiple attacks per day.  Most are mild-medium.  Even when there is no headache, it seems that my nerves on that side of my head remain on the highest alert.  So, even being outside in a bit of wind cn trigger a mild CH.  These generally only last 20-25 minutes.

The sumatriptan only seem to be effective for 2-3 hours.  I can only take a max of 2 per day.  Apparantly, you're not supposed to take them for extended periods.  I'm already getting a fair bit of tingling in my hands/legs after taking the 4th shot in 5 days. 

I've been put on repeat prescription, but, told that there's really not a lot else I can have (and that inclodes O2) before Ive seen the neurologist.  I've been told to expect a 4 month wait for that.

So, once again, I'm looking for answers.

Reading around, I've seen whispers that Melatonin can help.

My usual sleep pattern (when not suffering) is to wake up at least twice in the night (at least once for the toilet).

Any advice would be greatly appreciated :)

Hi,

I've not actually used melatonin myself so can't help you there... but with the day time milder attacks - what I would call 'shadows' maybe I can...  During a cycle I get these pretty much all day every day and have found that exercise helps to get rid of or at least minimise the pain.  I often go and play footy with my son and before I know it the pain has eased.  Sometimes I even get stuck into cleaning up the house  ::) anything energetic seems to help...

Hope someone steps in soon with the melatonin advice.  Sorry to hear you're hurting!!!  4 months is a ridiculous amount of time to have to wait to see someone to prescribe 02!  Grrrr  >:( 

Keeping you in my thoughts and wishin you all the best,

Kate

Kate in Oz wrote on Aug 10^th, 2010 at 7:53am:

4 months is a ridiculous amount of time to have to wait to see someone to prescribe 02!  Grrrr  >:(

Tell me about it :(

Thanks for that, Kate :)

One thing I will say, though...I get shadows as well...and these are different from actual daytime headaches.  The shadows usually mean a tightening behind my left eyer/around my sinuses and sometimes sensations shooting (just for a second) through veins in the upper left side of my head and a horrible feeling on the side of my head where I get the pain.

What I am getting in the daytime is actual headaches...milder than my main night time one, but, still actual headaches.

Like the main one, they come on, reach a plateau quickly, then stay there before subsiding.  I've always had shadows, but, the extra attacks are something new.

Not sure if I've mentioned this before, but, when I'm out, I do find that wearing a tea cosy type hat makes a marked difference...I still get the milder attacks, but, less so from wind/draught.

With it being the summer, frankly, I look silly....and if I'm honest, I've had people openly laugh at me, but, a bit of laughter Vs less pain = the hat wins.

I'm not exactly thick skinned eithor...and I hate the laughter, but, when needs must...

As far as excercise goes, I'm really not sure on that...as I've mentioned before, warm (though not hot) helps, cold seems to make the CH worse.  Yesterday, I *just* missed the bus to work (my first bus was late), so, had to peg it a quarter of a mile to head off the second bus...my head was throbbing (but no headache) afterwards, and the sweat (without the hat this time) was pouring off me....whick cooled me down...at this point it brought on a mild attack.

Hi Mark :)

I don't pretend to know anything for sure with this thing, I'm only just starting to learn about it myself.

One thing you said in your last post hits home with me though - wind and draughts seems to make mine worse too. We have a fan in our bedroom, on my side of the bed - it blows directly into my face. We haven't had it on for a while, but needed it a couple of days ago and bingo - I woke up just before 4am with a blinder (after taking sleeping tablets!).

Kept the fan off last night and didn't wake up once. I'm now wondering if the draught from the air-con at work is having the same effect, as the afternoon attacks have definitely been worse when I've been in the office and we've had the air-con on.

Good luck with your Neuro appointment and getting o2. I saw my doc today, he can't prescribe it either and told me I'd have to wait until I see my Neuro in a few weeks. Have since found out though that o2 isn't covered by our local health cover (we pay Social Security here, kinda like National insurance... Pay a fortune every payday yet don't seem to get a huge amount back from it). Did get the Imigran injections though (so even if I can't get o2 with our ''cover, I can silently smile at the £42.50 that every single injection dose costs).

Jen

One more suggestion until you can get in to see the doc.....a product called     4 way nasal spray     it was suggested to me by several of the people at the OUCH convention a couple years ago. Snort it up the affected side nostril, helped with heavier shodows. Only a couple bucks, non prescription, might be worth a shot.

Joe

Guiseppi wrote on Aug 10^th, 2010 at 2:35pm:

One more suggestion until you can get in to see the doc.....a product called     4 way nasal spray     it was suggested to me by several of the people at the OUCH convention a couple years ago. Snort it up the affected side nostril, helped with heavier shodows. Only a couple bucks, non prescription, might be worth a shot. Joe

You use that too Joe?   ;D  Me too, my dad taught me that trick!

Mark~

Both happy and sad to see you here.  Sad that you are suffering, but happy that you found this site.  I have been one of the "lucky" few women sufferers for almost 15 years.  Started when I was 30 with the worst and biggest 10 you could imagine.  I thought I was losing my mind.  I was tested for everything from allergies to thyroid condition, to brain tumor.  I saw EN&T, neurology, allergy, radiology, etc. specialists.  They were shoving codiene at me like it was candy.  This was the worst thing the doctors could do as it was creating a rebound headache.  Finally, my GP returned from maternity leave, took one look at me, told me I was suffering from Cluster Headaches and to throw away the codiene. 

I suffer from Cluster headaches with a migraine component and my triggers range from humidity/climate changes to smells, to foods/drinks, to stress/lack of sleep.  I try to maintain a regular schedule and avoid my triggers: perfumes, colognes, tea, stress.  I was on oxygen therapy for a while and it was very helpful.  I also maintain well on water therapy.  The more hydrated the better.  For a 6 or above on the pain scale, I will go in for a torodol shot.  If it is below a 6, torodol won't help me, but if I get up there, generally the torodol will knock it out in about 20 minutes.  Take imitrex/maxalt, also, but it takes an hour and a half to work and messes with my stomach something awful. 

You mentioned hot helps you, well cold helps me.  I run the airconditioner in the car directly on my face.  It gets cold enough, it seems to numb some. 

You really should get in to a good neorologist for a proper diagnosis and keep charting your triggers.  Most doctors don't have a clue about Cluster Headaches, but if you get a good one, they will research it for you.  Mine did.  We learned a lot together, and even more through this website.  The people here are awesome!

I hope you find the right combination for you.