Hi all,

I was diagnosed 2 and a half years ago, around Christmas.
My first CH cycle. 2 weeks of pain, high on paracetamol and codeine, no change. Then my doctor tells me to go visit a neurologist because she suspects I might suffer from something called CH.

I do my story and without a blink, scans or blood investigation, my neurologist says I suffer from CH...
Although, with a twist...

I suffer from migraines regularly as well, it seems that's the twist.
I can feel it lingering, it comes up softly. 90% of the times on the left, sometimes on the right side. When it's on the right side it's far worse though.  I take a paracetamol with codeine, and when it's on the left side it works within 15 minutes and I'm as good as new.

CH, I have all the symptoms...
from no pain to KIP 7 at least in 5 - 10 minutes.
Horner syndrome on left side (always left, only had it on the right side once)
attack lasts 45 minutes to 1h30
Face temperature rises a lot
Tearing eye
Blocked nosehole on left side
I can take any kind of painkiller, nothing helps...
However... never during the night, I never wake up from it, it might happens late in the evening before I go to bed though.
I don't mind light or sound, I just want to be left alone, I can't stand answering to people. The effort to speak to someone is a huge pain.
I lay down to try to stay as calm as possible, but occasionaly want to strike down at something.

The neurologist says that suffering from both migraines and CH is pretty rare. It's either one thing, ore the other, but not both...
Ok, I don't have both during a CH cycle, but sometimes I do have migraines, sometimes I have a CH cycle...
Apparantly that's not normal.

But what strikes me is that without any investigation, this guy diagnosed me as a CH patient. He said I was lucky to have had a doctor who directed me to him because so many patients are misundertood and get misdiagnosed for years. He prescribed me topamax and imitrex and I didn't get another cycle until the next Christmas.

I called him back then and I could visit him the same day.
He upped the topamax dose.
That's when I took my first imitrex shot. Goodness was I happy that my wife was at home. I don't know what's in an imitrex shot but I felt like I was dying.
I was off world or something... my whole body felt like it was floating. My head felt like it was not attached anymore and it felt like I was sooo relaxed so it seemed I wasn't even breathing anymore. It was a very strange and scary experience. But, the pain was gone completely so I seriously thanked the heavens.

I had to keep the topamax dose up at 75mg but since it didn't occur during the year I lowered the dose to 50Mg and upped the dose to 75Mg 3 weeks before last Christmas.
I had 3 attacks around last Christmas, that's it.

I actually had a 2 week cycle starting 3 weeks ago again.
Maybe because I decided to stop taking topamax because of the side effects.
That was the worst cycle of all. An attack almost every day. the most painful ones so far.

I didn't know of all you people, of all the kinds of medication like the oxigen treatment. I never read as much on the internet about the symptoms as I did now so I was thinking back then...
What the hell... Why am I taking topamax... all these stupid side effects... is this neurologist even for real? No investigation, nothing... just... you have CH, take topamax... but now that I'm reading all this, all these stories, all this information, I'm starting to take it all in.

this is all for real. I do have CH, it is real, it exists and I have it. I better start to live with it.
I don't know if topamax is my thing or not we'll see.
But ok, I'm part of the CH community now.

I have a lot of respect for all of you because it's hell.
And I'm even lucky. I have never even had more than 1 attack a day and I don't wake up during the night.

CH's and supporters, please keep finding the strength.
There's more to life out there!

Hi Anthony,

thx for your reply.
I'm looking forward to gathering some experiences, thoughts and info.

I don't know the medication indomethacin, but I have heard about nerve blocking medication. If it works like I understand it does I think it is a lifesaver or something? Does it block out all of the pain and does it kick in fast?

Well, maybe I should pm you
I have not heard of that term before (hermicrania continua), the neurologist didn't mention it to me. CH has been episodical for me so far. Migraine comes and goes but never too bad. I can have it like 1-3,4 times a month or not at all.

I'm sorry, chronical means it must be very tough for you!
Take care!

Please tell us where you live: This may effect the suggestions we offer re. meds.

You have good alternatives to Topamax. Many of our members also object to the side effects and it's not clear that it is superior to, for example, Verapamil, as a preventive.

While Imitrex is first choice as an abortive, there are other meds in this family which won't hit you so hard. Ask you doc about trying Zomig nasal spray.

Sending along two articles for your information. You may want  to copy them for your doctor and use them as a tool to discuss your options for treatment.
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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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See the PDF file, below.
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Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

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SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

Thanks all for the replies.
There is a lot of information in these replies so I will take the time to read through those more carefully and slowly and look up what I need to.

It is amazing how in such short notice I have already read so much more about possible medication here than the doctors have told me about in over two years.
I am eager to learn about this and talk about it with my neurologist.

It's so great, I don't feel dumb or silly anymore talking about this. Sometimes I get this feeling that when you talk with doctors, they think you're either incredibly weak or what you're saying about how you feel when you take the medication can not be true.

Btw, I am 26 years and I live in Belgium, Oost-Vlaanderen.
Imitrex shots are pretty expensive. I need to get permission from a certified doctor by law to get the shots at a reduced price at a pharmacy. They cost about 50 euro's per 2 ampules. The permission stays valid for about 1 year and for a maximum of 14 ampules or so which is rediculous.

For topamax I have permission until 2014, but I take topiramate now, that's cheaper. the prices here are very ok with the reduction. I guess I should take this to the medicine forum.

Thanks all!

Hi all, back after the weekend.
Nice, able to relax and have a calm weekend. Ready to dig into all the information here again and ask some questions.

I hope you all have been doing wonderful as well. NO visits from the beast I hope!