Hi all, I'm new to the forum. Have been having ch for about 6 weeks now, this cycle - previous cycles in my late teens and early twenties, diagnosed as migraines or allergies - I'm now 43. Diagnosed with a prolactinating pituitary macroadenoma (brain tumour) 4 years ago, with brain surgery to reduce its size. I've had an MRI to rule out the tumour being the cuase of the ch and am having an MRA this week to check blood flow in the brain. I'm a bit concerned that my neurologist knows less about ch than I have learned here - I pushed for oxygen and she said I could just hire a bottle at the local pharmacy!! not true, as I discovered - eventually managed to get her to fax a request for oxygen to our local supplier, in which she asked for "4L/min via nasal prongs". Fortunately, the supplier provided a tank that gives up to 15 L/min (he seemed to know more about ch than the neurologist!) which has worked effectively as long as I use it at the first hint of an attack starting. I'm also taking 160mg of Verapamil daily, as a preventer. Do you think I should find another neuro or educate the one I've got? Thanks to everyone here for their kindness in posting about ch - you are such a help!

G'day Barbara and welcome to ch.com, the biggest unfenced lunatic asylum outside of Canberra. Sorry you had to come looking for us but here we are, large as life and just as smelly.

Good that you were able to get onto oxygen so easily, even if it really was by roundabout means, now all you need is the mask recommended by all leading sufferers of this dread disease - a non-rebreather mask most likely available from your pharmacist and certainly through the site here.

You're also dead right that getting onto it at the first hint of a hit is the way to go.

Let us know how you're getting on because we really do know what you're going through and you're now amongst friends. There's even some other girlies here so you can talk behind our backs.

Bestest always to you and yours,

Brian up north.

(PS.  If Guisseppi tells you not to send beer to Queensland, he's lying.)

Hi Barbara,

Welcome.  So glad that you found this place!

You're probably right about knowing more about CH than your neuro.  Sad but true.  4lt through the nose - I think not!!  Arghhh    As to whether or not to look for a new one - I don't know?  It sounds like you've probably got a good history with her, she just doesn't know much about CH.  My neuro took ages to give me a diagnosis because I was female.... that was about 9yrs ago and I've not really seen him since.  I know what I need and I just ask my GP for a script if I decide to use verapamil. (He has been well educated)  I have an account with BOC for the oxygen and so I'm pretty much set. 

You might want to read up and print out some of Bob Johnson's articles to take along to your appointments - especially those relating to verapamil usage and oxygen etc etc.  I think you'll find that 160mg is not a very high dose, perhaps your neuro is planning to see how you go and possibly up it?

Anyway I don't really have much advice to offer, but I did want to say hi, being that I'm an aussie too  :)

Wishin you all the best (especially with educating your neuro if you stick with her),

Kate

If your neuro will listen to you, try educating them! 15 LPM with a non re breather mask is the minimum. If it loses it's effectiveness, consider jumping up to 25 LPM or more.

Your dose of verapamil is low, some go as high as 960 mg a day but it does require close monitoring as you go up.

Welcome to the board, in short order you'll know far more about CH then your neuro! ;)

Joe

G'day Barbara from the other side of the ditch.

As other people have mentioned you can get yourself a non-rebreather mask which will be a lot, lot more effective than what has been supplied. Similarly you can get yourself a regulator to access higher flow rates if 15lpm isn't enough.

I'd also read like mad what you can see on the forums and you'll soon know a lot, lot more than your neuro. And ask questions too!

If you stick with your neuro then give him medical materials, not comments from our messages, by way of educating him.

Print out the PDF file below and a full version of the article. They will help educate both of you and give you common ground to discuss treatment options.
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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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Also,

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

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)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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


 

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Thanks everyone for your welcome and advice. I should be getting a non-rebreather mask today. Thanks also for the links to articles - I have added them to my collection of literature and will share them with my neurologist when I see her next week.

AussieBrian wrote on Nov 21^st, 2010 at 6:40pm:

G'day Barbara and welcome to ch.com, the biggest unfenced lunatic asylum outside of Canberra. Sorry you had to come looking for us but here we are, large as life and just as smelly.

Smelly???  Speak for yourself Brian !    ;D ;D ;D

Welcome Barbara sorry you had to join us, but glad since you needed to you found us.

If your neuro isn't more helpful after your next visit I would definitely seek out a Headache specialist or at least a new neuro.

Hope you find some PF times soon!

G'day Barbara & welcome
Looks like your on the right track with the o2, glad you managed to get it reasonably easily.

Cheers
Barry up north on the western side.