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Message started by Jean Pierre on Dec 8th, 2009 at 8:30am

Title: Hi
Post by Jean Pierre on Dec 8th, 2009 at 8:30am
Hello, I'm Jean Pierre, 49 years and I live in Belgium.

On October 3, I had such an attack of 'migraine' that I had a 'black out' for several minutes. I had been suffering these migraine attacks for about a year... 3 to 4 times a week mostly during the night. They lasted never more than a couple of hours, where tremendously painful and no painkiller would help.

But from that day on these attacks came 2 to 4 times a day... day and night. All kind of test were done and finally a neurologist told my that I had CH. So we started treatment after treatment... and now nine weeks later, the 'beast' releases his power about 4 tot 6 times a day... sometimes giving me only about half an hour to get ready for the next visit. So I'm glad I found this place...

Title: Re: Hi
Post by Martin on Dec 8th, 2009 at 10:25am
So it seems that from Oct 3, till now, your first real "cluster" cycle.

the other hits over the last year were just getting you ready for what was to come... full blown clusters.  Hoping they leave you soon, I really feel for anyone loosing sleep and their will to fight.

what treatments have you and your neurologist tried? have you had any luck with 15 L/min+ oxygen?  let us know what you're doing, and maybe we can learn from eachother in how to stop the pain from coming back (or shortening it)

good luck, wish you the best and Welcome to our site.

Title: Re: Hi
Post by Bob_Johnson on Dec 8th, 2009 at 11:55am
If you have the option of locating a headache specialist --this would be your best option. This area of medicine is very complex and the majority of physicians have quite limted training in headache.

You may find this article a good introduction to CH:

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND 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]

Title: Re: Hi
Post by Joni on Dec 8th, 2009 at 12:39pm
I'm so sorry, Jean.  Welcome.  Read and post all you can on this site for people here to be able to help you better.

Joni

Title: Re: Hi
Post by bejeeber on Dec 8th, 2009 at 2:48pm
Jean Pierre,

Please realize that the treatment after treatment a neurologist (especially a non headache specialist) typically prescribes is worthless more often than not. Meanwhile, there are very effective treatments that we're pretty familiar with here.

So yeah please let us know what sorta treatment you've been trying (I seriously doubt it's been 15+ LPM O2 with non re-breather. It works, but fat chance any neurologist bozo is going to prescribe it or even know about it).

Title: Re: Hi
Post by Jean Pierre on Dec 23rd, 2009 at 9:24am
Hello, sorry for not replying for such a long time... but I've had a serious case of the flu and the virus found a nice place in my lungs to settle down. But I'm better now.

To start with, I must have a good neuro because the oxygen treatment was the first thing he said to counter the attacks. To prevent the attacks he prescribed Verapamil, starting with 240mg a day going up to 360 after 14 days.
After one month, with no improvement I had to take Medrol (cortizone) the side effect of this one made really sick and weak and three weeks later I had to stop this treatment because the cure was becoming worse than the disease.

The next treatment was Topamax, 25mg a day going to 100mg a day in 3 weeks. I didn't really feel any improvement in the beginning... but once at the 100mg again the side effect were very hard to bare. I lost 12kg in 5 weeks, almost impossible to eat... pain in the belly... but for 6 day no attacks!... what a relief!
And than the attacks were back... at first one a day... two... and today it's already 3 attacks a day.

The weight loss and other side effects worried the neurologist so he ordered a blood test and the white blood cells are way too low... so I have to stop the topomax treatment. Back to the beginning...

To treat the attacks I also have sumatriptan and almogran pills... still waiting for the approval for imitrex injections, which takes time overhere.



Title: Re: Hi
Post by deltadarlin on Dec 23rd, 2009 at 10:53am
I hope your doctor told you not to mix the sumatriptan and the almogran (Axert in the US).  I'm not a ch'er, but Axert didn't do anything for my migraines.

Title: Re: Hi
Post by Jean Pierre on Dec 23rd, 2009 at 2:34pm

deltadarlin wrote on Dec 23rd, 2009 at 10:53am:
I hope your doctor told you not to mix the sumatriptan and the almogran (Axert in the US).  I'm not a ch'er, but Axert didn't do anything for my migraines.

Yes he did... it's either one of them! Almogran only helps me if the attack has really started. If I take it too early it doesn't work at all. But when I wait 5 minutes after the start of an attack than it kills the pain after about 15 to 20 minutes.

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