Hi to all my fellow CH sufferes. I found this site when looking up information about my current CH medication and blocker meds. I'm now in my 3rd cycle this year, the first from Jan to April, my second from May to the end of June and now this one that started early July (it's 12th August in New Zealand today). I was diagnosed by my neurologist in 2007 and my attacks can be anywhere between 3mins and 3 hours, the most attacks I have had in 24hrs is 15. I don't know if other suffers have any other symptoms besides the swollen tearing eye, running nose and excrutiating pain but I also get slurred incoherent speach and very blurred vision - losing my sight in my eye for 3 hours on one occassion. My thinking is very foggy during an attack, my legs are unstable and I also take longer to process things when I have the shadow. I've been on Prednisone and Verapimal for the last 3 years but get so depressed with the extra weight gain so I am desparately seeking new effective medication. I go to the surgery to get Oxygen when I can't cope any longer. How do I convince the doc to refer me to the hospital to get my own oxygen at home? Mostly I deal with it, drink loads of water which helps etc. Sleeping is impossible as everyone knows, when I lie down it spreads to the other eye - it sucks! The fatigue is something else - I'm always exhuasted during a cycle and no longer cry when I've been up literally all night. I'm going to spend some time doing some more research on effective treatment but if anyone is using anything (other than Predinsone) that is effective, please please share with me. Phew, so good to get that off of my chest. My husband is fantastically supportive but feels helpless when it's really rocking off. But it's so good to have all of you on this site to reach out to ;)

welcome anne-marie!
wow you have it real bad! i never heard of some of these symptomes of yours. 15 attacks a day? that sounds awful! i never knew CH could have that many, i always though 8 was like the max.

hope you find yourself a good doctor soon anne-marie! they are a rare breed that's for sure. wishing you all the best, and keep us posted!

matt

Hi Anne-Marie

Thats quite a first post.

First off, you should be on prednisione for long periods of time as it can be pretty harsh on your body. Most poeple only use it for a few weeks at a time on a taper dose as they build up their normal preventive, like verapamil.

Prednisione can make you want to eat anything, be it a pizza or the box it came in, yet another reason to use it sparingly.

What dose of verapamil are you on? Most people need at least 360-480mg a day with some going as high as 1000mg.

For those who don't respond well to verapamil there are other alternatives like lithium and topomax.

For the other symptoms, my supporter can tell when I'm about to get a CH as I seem to have trouble with speech, so you're not alone on that. It is also possible that you're experiencing more than one headache type too, which can complicate things.

As for taking a bit longer to process things when experiencing shadows, that is no surprise. I know that I am not at my sharpest when I've got them.

To read about how I got my oxygen here in NZ, have a read - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The only difference is that this was up in Auckland, however now I've a BoC account I can get oxygen from them when down in Wellington too.

Do all you can to get oxygen, with a high flow rate (15lpm as a minimum, with more being better) via a non-rebreather mask. Being able to kill off a CH in minutes (average of 6 minutes for me) is a life changer.

Also ask for imigran (imitrex) in the injectable form as this can kill off CHs in a similar time, but it has more side effects than oxygen.

Read up here a LOT. There is so much to learn about how to get control back from the CHs.

And ask questions like mad. We all know just what CHs are like.

You believe you have Cluster?? If you have been on Pred. for 3-yrs this suggests that your doc doesn't have the skills you need. There are a number of meds to abort attacks which are safer for long term use.

Suggest you find a headache specialist and start over with a good diagnostic work-up.
====




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]

Welcome to the board Ann, you've been given some great advice, I'll just add one link. This is our sister site which uses "alternative methods" for dealing with CH. It's turning out some amazing success stories, especially for people like yourself who are getting creamed:

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

Joe

Thanks to all of the responses and advice. I don't think I have clusters, I know I do. When I say I have been on Prednisone for the last 3 years, I mean during my cycles not constantly - sorry if my message was misleading. And yes, the Prednisone (and Verapamil) is on a reducing dosage. Thanks to you 'Mike NZ' for offering to send me material on alternative treatments and advice on getting Oxygen at home here in NZ. I'm going to get as much info as I can, thanks 'Matt' - great advice.

Hi Anne-Marie,

Glad to see that you're getting good advice from everyone. The clusterbusters, etc. that's been mentioned is no joke - we're not kidding around here when it comes time to getting some major relief from these things.

Glad you made it here - I bet you'll be doing better now that you're taking this into your own hands. So many who have come here for info and advice (including me!) now have vastly improved treatment plans.

Hi Beejeeber

Thanks so much for your encouraging message. You brought a huge smile to my face.

Warm wishes
AM  ;)

Hi Anne-Marie

Welcome to the nut hut.

Your in good hands & you've got a good ally in Mike NZ he knows his stuff on your side of the ditch.

Cheers
Barry