Thanks everyone .  My cycle started up one week ago, and I'm new to 2-3 hits per day. I got an appointment with a neurologist on Thursday!  I'm so happy because the ER doctor said three months.

The ER doctor prescribed 25 mg Imitrex tabs (sumatriptan).  And my family doctor gave me samples for 40 mg Relpax (eliptritan) and also 2.5 mg Frovatriptan.  I've been experimenting aborting my hits with these migraine pills, but they all seem to take 45min or an hour.  I'm hoping neurologist has some good advice for me, like injectibles, oxygen, and preventative meds.  Trying to make a list of what to ask during my visit.

930am and 2pm, 2am are all regular times which means my 9-5 job is suffering.  My boss has been kind so far, but I'm not sure how much longer this will keep up.  I'm worried about losing my job, and live in fear of these terrible headaches.

Thanks for everyone here; helps me during the low times to maintain some positivity.  I don't know if I'd still be alive without you guys.  This cycle is my worst, and I feel unable to deal with it sometimes.  I know a kip 10 now, and I'm so sorry for everyone who has these headaches and especially for people who have them worse than me. 

Time to get pro-active! Demand oxygen.

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There is info here you can print out and take to your neuro visit with you. It should be your first line of defense. I recently retired from law enforcement, on cycle I had an E-Tank in the trunk of my cruiser. Feel an attack coming on, pull over, 6-10 minutes of huffing 02 I'm back on duty again. Was a real life saver for me.

Oral meds are generally not much use as abortives for us as CH ramps up too quickly for them to be effective. The injectable and nasal spray forms of imitrex are far more effective. They are expensive, and I don't like how the shots make me feel. But if I'm caught away from my 02 I don't hesitate to use them.

Verapamil is a common first try prevent and is succesful for many. We use it at doses higher then the BP patients it was originally made for, some go as high as 960 mg a  day to get relief.

Talk to your neuro about a transitional treatment. Verapamil will take up to a couple of weeks to start being effective. I go on a 10-14 day prednisone taper to help keep the beast at bay while my prevent works up to a good level.

Congrats on the fast appointment date, that's awesome.

Joe

I would talk to the doc about injectable Imitrex. You can look it up online but it's a little kit with an injector pen, stings a little but works pretty well and much quicker than the tablets.

I also have relpax in my "arsenal". I find that it works pretty well if you get one at the very 1st inkling of a hit.

You also should talk to the doc about Verapmill. It's a blood pressure med that's used off label to help clusterheads. If you search Verapmill on the message board, you'll find a ton of good and detailed info to use for your visit.

100% pure oxygen is reported to be the best abortive out there. However, you can run into roadblocks with getting a doc to prescribe it but the great people here have posted tons of good info about oxygen and how to get it. I would suggest digging around on the message board for info about oxygen.

Bottom line, clusters are very rare and quite frankly, I've found out more about clusters from this site than I did from 4 different doctors. Gather as much info as you can and hopefully your doc is open to dialogue, if they are not already familiar with clusters.

Last thing, I hope you have good insurance, all the triptans are VERY expensive. Relpax comes in a six tablet pack, without insurance, it costs over $300!!

Good luck!!

Don't mix,or use at the same time, the abortive meds the doc gave you! No safe. Before you start treating yourself you need know basic info about the disorder.

See the PDF file below.

Print this article:



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]
===
Suggest the firsts title:

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This outfit offers a number of titles, each covering a separate medical condition.  Good, Written in non-technical language. Broad coverage of CH--causes, treatments, etc. Worth exploring the sample pages.
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")


HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

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Thanks all for your help.  I love this site, and was lucky I found it last year when my cycle started up.  I feel like I have some good info going into my next visit.

Good to know not to mix; I'm speaking to my doc this afternoon about the meds hopefully can get into the injectables.

I live in Canada, and am Inuk (one of the 3 aboriginal groups) and my meds are paid for.  I'm so lucky, because I know how prohibitive the cost could be and know its a big factor for many people here.

Thanks so much! Ill let you know how the visit goes on Thursday, and hopefully get some 02 and Imitrex injectors!

Cheers, and keep on trucking.