I'm pretty new to CH, it all started just over a month ago and seemingly the result of a concussion I got at Easter. So to get the diagnosis so soon compared to the years some people have to wait seems a miracle. I just can’t imagine what it would be like to go through this for years without answers as a month seemed like an eternity.

Finding this site and other material online is amazing. It very helpful knowing I'm not alone and I'm not being a drama queen when I'm rolling on the floor in unbelievable agony, crying my eyes out with pain that seems to be beyond description.

At the moment I'm just trying to get as up to speed with the vast amount of info there is to see. If anything, there seems to be almost too much. The after effects of the concussion have left my mind in a bit of a fog, which makes assimilating info a lot harder.

I'm lucky as I tend to only get one attack each day, with three being the most, so far. The longest gap I’ve had between CHs has been three days, so I’ve no idea if I’m chronic or episodic.

I've had CT and MRI scans, lumbar puncture, blood tests and just about everything else in a 6 day hospital stay, so I know it's "only" CH (laughing at the "only") after the third consultant I’ve seen pulled everything together, although some of the others were starting to suspect the attacks were CHs.

At first I was given codeine to try to control the pain, which didn't seem to even scratch the surface, but instead got me addicted to it, although I've just got through the withdrawal from it. It's amazing how just by using a perscription medication exactly as perscribed I got dependent on it so quick.

I've been given a Prednisione taper and Nortriptyline which seems to be a good way to get some degree of control back, but not yet anything to cut short an attack.

After reading countless posts here (many bringing me to tears from recognizing my own experiences in what people have written) I’ve tried using a Red Bull as an abortive. It seemed to result in a milder CH than I’ve had the last few nights, although it’s hard to compare to what would have happened if I hadn’t taken it. However since I rarely drink coffee or caffeine drinks (it was my first ever Red Bull), once the CH was over, I spent just about the rest of the night wide awake, which seemed a good improvement.

From all the posts raving about oxygen, this is something I need to investigate about its availability here in NZ.

So thank you for all the amazing info here, which is so much more than I've got from doctors.

Welcome!


Quote:

From all the posts raving about oxygen, this is something I need to investigate about its availability here in NZ.

That it is. If it works for you, you will never be without it. If you haven't done so already, take a look at the O2 link on the left hand side of the page. Plenty of good info there.

Bill

Welcome to the site Mike.  There are a lot of great ppl here who are always willing and ready to lend advice, share experiences, or give a word of encouragement.  I am sorry you must endure the dreaded beast, but I am so glad you have doctors that were able to diagnosis you as quickly as they did. (althogh in my opinion, not quick enough, but better than two months or a year)  Best wishes to you Mike!

Mike NZ wrote on Jun 13^th, 2010 at 11:55pm:

...... amazing info here, which is so much more than I've got from doctors.

Yep, that pretty much sums up the typical experience.

So glad you're really researching this CH thing.

If you haven't tried this yet, reading through several of the other Getting To Know Ya topics can quickly give you a good idea of the treatments that the veteran CHers around here favor the most as you read their responses.

Print this article out (full vesion) and the PDF article, below both for your education and to use as a discussion tool with your doc.
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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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Welcome to the board...damned sorry for WHY you had to come here. Take as gospel anything Bob tells you to print out for your docs. It'll be the latest and greatest research.

Another strong vote for oxygen here. My wife has named my e-tanks Olivia as she knows I have a deep seated love affair with them! ;D Knowing you can knock an attack out in less then 10 minutes takes most of the scary outta the beast.

My only other advice is don't RELY on the doc's to cure you on this. Most know very little about CH and the tremendous advances recently made in its treatment. It sometimes require you leave your comfort zone and challenge your docs a little when they tell you how they're going to treat you. We'll walk with you every step!

Joe

Thank you for all the responses. It's great to see such a strong community here.

The articles Bob linked / uploaded make really interesting reading and will certainly make excellent material for when I discuss this with doctors. Being prepared with such a good understanding will make the consultations so much more effective. I can be quite persuasive with doctors when I know enough, especially as it's my life I want to get back on track here.

For the oxygen, is there any simple way to tell if it's likely to help me that I can use as justification, other than the roughly 70% figure where it helps? Whilst in hospital they did try high flow rate (not sure the exact rate) oxygen once one attack had started, however it was just using a normal face mask and not a re-breather one, which I understand from the oxygen page here is nothing like as effective. Whilst that attack wasn't too severe at all, my scientific training makes me uncertain of anything where I only have a single data point.

I've still lots of reading to do, so I'll no doubt have more questions later.

Used correctly you'll know in very short order if it works. The earlier it's started, the more effective it is for most. As I mentioned earlier, 6-10 minutes is all it takes for me. Hope it does as well for you!

The critical point is for your lungs to get ONLY 02, no outside air, no exhaled air. That's why the Non Re Breather is so critical. Good luck with the doc!

Joe