Hello to you all,

My name is Andy from the Uk, and I'm 34.  Ive been suffering with CH's for about 15 years.  Although I read some of your stories and think I maybe dont have such a difficult time as some of you.  I only get an attack about once a year, lasting 1-2 weeks.  The pain is usually on the 7-8 range on the 'Kip' scale.  My latest attack started last night which is what prompted me to come here.

It took me probably over 10 years to diagnose this condition.  Several doctors later and diagnosis from sinus problems, stress/tension headaches, migranes, even toothache. 

Eventually I looked on the internet, because I thought it strange that my attacks were occurring almost to the week of each other, every year, usually around October time (although the attacks are a little more random now).  This regularity led me to Cluster Headaches, after reading all the information I could find, this is the only thing it could be.

I am a little worried that the attacks are becoming more regular.  It is becoming less than 1 year now between the occurances, this latest one being about 8 months.

Now I know what it is, my current doctor prescribed me 'Sumatriptan' which if I take early enough can help to take the edge off, but have yet to try anything else.

My girlfriend is very understanding, and is very interested in reading up on the condition to help.  My friends also understand, but work collegues are a bit more difficult to convince.  (i.e. 'bloody headache...softie....etc.)

Fortunately I seem to have it a little easier compared to some of you guys.  I dont know how some of you cope, so my heart goes out to you all.

This is a great site, Im off to do some more reading up.....getting ready for my next CH when I go to bed  >:(

Andy

Andy,
Glad you found our little website!  Also good to hear that your girlfriend is understanding, my wife is too, and that makes a world of difference.

Have you tried Oxygen?  It works for most of us. 
Here's a link that will explain:
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Also there's an anti-inflammatory vitamin supplement regimen under the post "123 days pain free and I think I know why" that has been a great help to me and others.

More members will be along soon to post their ideas for what might help you.
Best of luck!
-Gary

Hi Andy and welcome to the board!
You will find a lot of support here with very good advice from the CH vets
who will be along shortly to help!
I'm sorry you have started and suffered with this demon at such a young age...
One thing you will learn from here is it's unpredictability...
There is no rhyme to its visits, probably one cycle can be measured but, the next one will change as you are now finding, don't worry, this is normal behaviour for CH...It does vary a lot due to many reasons which you will learn yourself and from the peeps on here!

One major bonus you have is your girl's and your friend's understanding,and this is VITAL to your mental health and gives you the strength to fight CH!
We have a form for you to print off to give to the d******s at work!  ;)

I thank you sir, for your empathy!

Respect

Gary

Because so many docs know very little about Cluster, it's important for you to learn as much as you can.
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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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See the PDF file, below.
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You have an excellent support group which I'd encourage you to join:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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Explore the buttons, to the left, starting with the OUCH site and its many links.
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Reading this site regularly will exposure you to many people with knowledge and skill in dealing with CH.

This fragmented message will give you some other leads for treatment in the U.K.:

Message: "Dyno", Tenby, Wales, UK, Aug 9, '09:
[Bob-excludes Wales per Dyno]
looking at their website it looks like a better alternative  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see.

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

and this - copied from the OUCH(UK) website

Quote:

You can ask your GP to refer you to one of our hospitals for treatment
Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment.

[Source: UCL website]
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City of London Migraine Clinic [and other types]  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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Can't add much to what Gary, Gary and Bob have posted. I'll second the oxygen link, I'm a 33 year episodic sufferer, I can kill attacks in 6-8 minutes huffing 02. Do read the link as it must be used correctly or it doesn't work.

If you're taking the oral sumatriptan I can understand why it don't help much. Most use either the injectable or the nasal spray, oral just takes too long to get absorbed to slow the CH progression.

Continue to educate yourself here, if it truly is CH it will continue to morph on you. Best you prepare yourself now so if a kick ass cycle hits you're ready to do battle.

Joe

Hi Andy,
I'm new here too ( about 2 weeks ) and your story sounds pretty much the same as mine with years of mis-diagnosis - toothache, migraine, sinus etc etc, before I read up on CH, then spent the next 2 cycles trying to convince dr's. Finally saw new dr last month who confirmed ch and prescribed sumatriptan tablets, she can't prescribe anything else so Im waiting to see specialist - Ct scan booked for wednesday just to rule out any nasties.
Just really wanted to say that in the last couple of weeks  these guys have been fab, I haven't relied to much but I have read the message board daily and the empathy and good advise has been so helpful, they really do help more people than they know. You have found the best place to help you through this
Thanks guys [smiley=hug.gif]

Hey, Andy! You wrote:

Quote:

I am a little worried that the attacks are becoming more regular.  It is becoming less than 1 year now between the occurances, this latest one being about 8 months.

We get the worry, and the fear. You have a good attitude now you need a good plan. Read here as much as you can, make a list of the things that have worked for many of us, noting especially the high dosages we seem to need for anything we use before it has a therapeutic value, and from that list create a battle plan just in case. There are a number of OTC prevents/abortives floating around, and while they may not work for everyone, they might for you. Share your plan with us when you come up with one, and in the meantime, welcome! Blessings. lance

HI everybody Im Darren from wales in the uk. i joined about 6yrs ago but never posted. im 43 and have suffered with this demon for 8 yrs now.I am currently in another bout due to change in weather. my story is just like everybody elses really my gp is crap he knows nothing of cluster headaches only good thing is i get whatever meds i need unlimited imigran injections these are life savers. i have tried all the main tablets and oxygen but has no effect on me. so imigran for me also taking lithium leaves horrible taste in the mouth. i saw prof.goadsby in his london clinic about 5yrs ago but nothing realy positive from it.some days i realy want too give up but the bastard wont beat me yet. we can only hope for a cure one day pigs might fly eh. regards too everyone Darren

Hi Darren,
Welcome to the board!
Where abouts in Wales are you mate?

The Veterans will be along shortly to ask you more detailed questions but I can ask you one thing right away about your O2 treatment...What setup are/were you using? I ask this because the knowledge of using O2 has leapt forward since 5 yrs ago!

It has got to be 100% flow with at LEAST 15lpm through a NON re-breathing mask to have any effect on your clusters! Which you must hyperventilate asap on, at the onset of an attack and keep breathing through and until all symptoms disappear..Do not breathe in exhaled or room air


Quote:

some days i realy want too give up but the bastard wont beat me yet

Thats the spirit Darren, you control the beast, don't let it control you!
And every single one of us here, has felt like giving up at one time or another....
It won't go away, he will be back, just make sure your 'packin' for next time eh?

Respect

Gary

Hey Darren!
Another Welshman!  :D  Welcome!  My dad was Welsh (my grandfather was from around Cardiff) and my wife (Kathy) and I honeymooned in Wales on up to Snowdon.  Batty has been a great encourage-er to me (and just about all the newbies) and he's right on the Oxygen.
You might also look at the post entitled "123 days pain free and I think I know why" put up by Batch.
Glad you finally posted, now that we know you're out there we'll help as much as we can.

Cheers!
-Gary

Hello Darren. Whenever we see this kind of statement:


Quote:

i have tried all the main tablets and oxygen but has no effect on me. so imigran for me

we know a couple of things. We know you've learned enough to graduate from pills to injections which work faster and better for most of us. But the O2 reference is a bit vague. Just about everyone who has tried O2 and found it didn't work, was actually not using O2 at its most therapeutic. Either the equipment was wrong (rebreathers), the flow was too low (we need 25+lpm) or the technique. Any of those true for you? I only say this because it really has been effective in both reducing the pain during an attack and aborting the attack at the same time. Would hate to see you passing over something that might really help. Blessings. lance

Hi gary nice too meet u mate. I live in prestatyn in north wales. With ref to the oxygen i was given cylinders and a mask and was told i needed 25lpm. I dont think the  mask was any good realy. Trouble is my gp is crap he doesnt know where too begin with o2. I am trying too educate him mate. I may try again thanks mate.

Darren, you might be right about the mask. But you can make even a rebreather mask work for you by either covering over the holes in the side with something pliable (a circle of plastic which will cover the holes on inhalation and "flap out" to exhaust exhalation) or just breathe directly from the tank tube using a T-connector. That plus the techniques of achieving hyperoxia quickly. A little thread search here will produce a lot of info and make O2 much more effective. Good luck, and blessings. lance

hi lance nice too be on board .thanks for the info i am going too try with the mask again.cant do nothing till next week my gp away again. far too complicated explaining to somebody else in the surgery. i wish they would find a cure it destroys so much of our lives. anyway thanks lance regards Darren :)