Hi there...

I just had the diagnose CH today - after years of treatment against Trigeminal Neuralgi - a treatment that of course didn't help at all!!!
I'm now a month into what appears to be my 3.rd cycle - with 3-5 attacks a day. Or should I say night, as they usually strikes when I try to get some sleep!
Instead of sleeping, I then end up pacing the floor, taking hot showers, drinking lots of coffee and often crying and screaming!
My last 'dance with the demon' ended only a few hours ago - and I'm exhausted! But every time I try to lie down to sleep the shadows creep in on me again - and I hurry on out of bed - praying that this one only will be 'a small one'!
Tomrrow I'm going to my own doctor, to talk about the results of the examination today - any good advise on what to ask for? (Meds, O2, whatever-helps?)

Welcome,

Oxygen at 15 lpm with a non-rebreather mask. The one with the bag on it. It takes my cluster away in less than 5 minutes.

As far as drugs, Well there is no point in even asking for certain drugs from most doctors, They are the one with the nice white coats and plaque on the wall.

Just print out the info on the oxygen and take it with you.

Coach Bill.

Thnx for replying so fast!
I must say that I 'panicked' a bit, after a couple of hours reading on CH! Seems like a nasty companion in life!!!
But for starters I'll follow your advise and ask for O2 - and take it from there.

Good luck to you - and thnx again!

As far as advice on what to ask for is concerned, yes you'll find a lot of enthusiastic O2 users here, and reading the oxygen info (there's a link to the left of this page) is essential, since there's important info there that doctors just haven't caught onto yet.

If the O2 fails me I use an imitrex injection to abort an attack. It works every time for me if caught at onset. Imitrex pill form is ineffective for CH but that doesn't prevent stupid doctors from prescribing it all the time.

For a preventative drug, high dose Verapamil is a favorite of some of the folks here. Someone may come on here to advise you about the best form.

Plenty of other ways to beat back this beast, but that would be some stuff you might get from the doctor.

For the powerful beast fighters that you're not going to get from the doctor, I think this Newsweek (American news magazine) article that just came out provides a good introduction:

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

For your hits tonight, I suppose you could always try extremely vigorous exercise, like sprinting til you drop, right at the onset, because that will abort an attack for some of us some of the time.

Then there's the topic from today in this same message board titled "Hey everybody! 30 year old male with 3rd go-around" that you could check out. Or not. I have no further comment on it.  :D

Thnx to you too bejeeber!

Will be a lot to remember - better bring my PC! :)
As for the attacks tonight - they seems to be over - but probably they will come back right after I crawl back to bed, desperate for just a little sleep!
Think I slept less than 4 hours average a day - on strange times, but almost never at night - for the last 3-4 weeks straight - exhausting for a guy my age (46) - I function best at 8 hours sleep every night! Anyways, thnx again for your advise - I will look into all of it right away.
Good luck to you too  :)

Welcome to the club!!! The dues suck but the members are a lot of fun!!

Go for a 2 pronged approach with your doc. A prevent medication, Verapamil, Lithium, Topomax, Etc., a med you take daily to reduce frequency and intensity.

An abortive. Oxygen, imitrex, nasal spray or injectable. And if you haven't tried energy drinks, Red Bull, Monster etc., any containing caffeine and taurine, try chugging one of those at the first hint of an attack. Many can reduce or even stop an attack with those, worth a shot!

Joe

Thnx Joe!
Nice to know, that I'm among equals! For the first time!!!
Will take all your good advise in consideration, when I go to the doc - not tomorrow - but later today, since the dawn is breaking here, and the birds starts screaming outside!
And still no sleep - really hope that the doc can do sth fast!!!!
Btw - I did have some effect from drinking strong coffee tonight, every time I felt an attack building up - and I'm quite sure it reduced a few of them in length and strength!
But it's definately not good for the stomach - but who cares, as long as it keeps the pain away!
See you around!  :)

Best of luck with the doc appointment Windjammer, and glad to see Giuseppi chiming in here - he's someone you can count on for solid advice.

Welcome and sorry to meet under such pain.

Definately try and get your doctor to prescribe 02 for you, I did at the beginning of this year for the 1st time in 20 years and what relief it brings, within 5-10 mins.

I used to be on Verapamil as a preventative and worked well for me, but was taken off this when a heart condition was found.

I'm like you, I need a good 8 hours sleep, but when in cycle I get hit 3-4 times during the night.

Good luck today.

Caron

When you are discussing treatments with a doctor you will increase your leverage by presenting him with medical literature to support your thinking.

A couple of items both for your education and to copy for your doc.
===================

 
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]
=========

Below for a PDF file. This document prepared by a medical professional association in the U.S. representing family practice physicians.
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And I should not neglect to send greetings from a "nearlandsman". As I sit at the keyboard, a picture of my godmother looks over my shoulder--born on Bornholm, leaving the family farm to spend her life in Chicago.

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Thnx for your help and support!
It's amazing to actually meet people, that understands the situation I'm in!!!
I had a talk with my doctor yesterday - and it turns out 'that my case' now is treated by the hospital - not him.
That will mean another few weeks of waiting in pain - and no idea when sth is going to be done about it...
A very frustrating situation, as I am in a very heavy cycle right now with lots of pain and hardly any sleep!
Did find a good thing in all this, though... It looks like stopping the TN meds I got so far, have reduced the cycle I'm in, a little bit.
Anyways - I'll keep you guys posted on what happens!

Stay strong, out there!
;)

Think about whether you want to wait for "a few more weeks" or whether you want to force a doctor, specifically a trained neurologist or headache specialist to get to work immediately.

Cluster is an emergency and not the removal of a mole and I would be surprised if in Denmark you couldnt get an appointment with a neuro sooner.

You may want to discuss with your neuro if you can get a course of Prednisone to "Pause" your cycle. Oral dosages vary between 60-80mg a day and are tapered off over the course of 10 days or so. Temporary remission is typically achieved within 1-2 days of taking the first dose. Prednisone is a transitional treatment (and not a long-term treatment) that allows preventative meds to take effect, for the cycle generally restarts after the prednisone has worn off (several days after it has been tapered off). Notwithstanding, there have been cases where the cycle has been broken completely after a treatment with prednisone.

Verapamil, Topamax, Lithium (probably in this order) and others that you can read about here are the preventatives and meds of choice for many here. All need several weeks or more and varying dosages to take effect and should be started simultaneously with the course of prednisone. Discuss the prevent options available to you with your specialist.

Abortives of choice are O2 at flow rates of min. 15 lpm or more (review oxygen info tab on left for correct use) and Imitrex injections. Many here also use energy drinks that contain a combination of taurine and caffeine. If consumed at the first sign of an attack they can, if not always abort the attack, at least reduce the pain levels.

Consider adjusting your lifestyle to very regular sleeping patterns, a low histamine and ph-neutral, yet balanced diet, drinking lots of water and as you will probably already know, staying strictly away from alcohol or exposure to solvents of any kind.

That one is easy to answer! I don't wanna wait!!! I now called the hospital again - to find out, that my 'paperwork' had finally arrived at the right desk - and I was told that I can talk to a doctor monday! That was the best they could do for now, with the weekend coming up!!!
Not very satisfying - but it gives me time to do some more reading - and be well prepared when I call monday...
Now I just have to get through the weekend!!!

Hope your appointment goes well and fingers crossed for the weekend.

neuropath wrote on Mar 26^th, 2010 at 12:17pm:

Hope your appointment goes well and fingers crossed for the weekend.

Thnx! :)

Hi Windjammer, I am 1/2 Danish so it is my honor to offer you a list of some recommended doctors who have helped other cluster headache sufferers in Denmark....this list below is from the OUCH website,,,hope this helps you.

Denmark

Dr. Anette Krabbe, Helsingoer
Danish Headache Center, Copenhagen Univ. Hospital in Glostrup

Flemming Bach
Aarhus Community Hospital, Aarhus University Hospital

Dr. Troels Stahelin Jensen
Aarhus Community Hospital, Aarhus University Hospital

Thnx a lot Las Vegas!
Funny, that you're ½ Danish... What ½ of you is that? LOL (Ooops - couldn't help that!) :)
Sorry to meet you here, though! Wish it had been under other circumstances...
But anyways - thnx for the advice. The hospital that is going to treat me is the Headache center in Glostrup - so I guess I'll be in good hands!

Father was Danish, Mother is Swiss

Sounds like a rock solid combination, Las Vegas!!! Danish viking stemina - and the attitude of a high-lander! You must be strong!!!! ;)
Funny btw, Bob Johnson also have roots in Denmark, he just told me that his Grandmother is from Bornholm - a small but very beautiful island in he south-east of the country.

Anyways - I actually swung by to tell you all, that I slept like a baby last night!!!! For the first time in weeks!!!!
Amazing what a difference one night can make - I almost feel reborn... And hope and pray, that my cycle is slowing down!!!

Wish you all a great and painfree day!!! 

Oh one good nights sleep can totally change your outlook! ;) Hoope there's a few more to follow.

Joe

Yes, it's amazing! Felt like a normal person today for the first time in weeks. And yes, a few more would be a wonder!!!
;D

Hey Windjammer,

If you're an old salt as the handle implies... Where do you keep your sailboat?  Svendborg?

Take care,

V/R, Batch

Close Batch!

It's on Langeland.... A small island just a few kilometers from Svendborg!!!
I moved here in '97 to be close to the sea - and the area is perfect.... Lots of small islands in the area.

:)

Hey Windjammer,

That's Great!  Let's hope the good doctors at the Headache Center in Glostrup give you Oxygen at 15 liters/minute so you can square the back, ease the foreguy, and gybe onto a new run, then sit back and splice the mainbrace as you tend the lazy sheet.

Take care,

V/R, Batch

YES! YES! YES!

Talked to the friendly people at the hospital this morning...
They will deliver O2 TODAY!!! Fantastic!!!
Ans I also had an appointment made to come in for further examination in just 2 weeks from now - very fast for a Danish hospital!

;D

@ Batch: Thnx! Looks like it's gonna be smooth(er) sailing from now on! (see previous post)  ;D

Well... The company that delivers are not as fast as they are at the hospital. They called to say, that they could come here wednesday - so I made an appointment, to go and pick it up myself tomorrow morning!
Got hit 3 times so far today - so I really hope that the O2 works!!!

Progress!!!!
Picked up my O2 today! 2 bottles with 10 l each.
Nice timing - had 5 'hits' yesterday - so I really hope it works!
Will keep you posted when I have tried it out!

Stay strong!

Excellent!!!  Now do the math...  10 liters at 200 Bar = 2000 liters of oxygen/cylinder...  Each abort will consume 150 to 200 liters so the two oxygen cylinders will be good for roughly 20 aborts...

Is that enough?

Well - it will do for some days.... And I was told to call the company as soon as the first bottle is running out - then they will deliver the next day!
Have a number I can call 24/7 to order - so it will probably work out!
;D

If they deliver 7 days a week that's a really good thing.

Around here the O2 supplier takes the weekend off, which can complicate things mightily if you don't have plenty of backup and the beast decides to start working overtime, dishing out unexpected extra quantities of hits on a weekend.

IT WORKS!!!!

Just aborted an attack in less than 5 minutes - and it never got half as painful as usual!!!
Did 15 l/min until the pain was gone - and reduced to 7 l/min for another 10 minutes... And the beast lost this round!!!!
Thnx again for all your advice and support people!

I suddenly look forward to be spending Easter with the family - a thought that scared me like H*** just yesterday....

;D