Hello all,
I stumbled across this board while doing some reseach on cluster headaches. I was diagnosed with CH's in July and my doctors haven't been very successful finding the right medicines to stop the horrific pain yet. My first experience with cluster headaches lasted for 6 weeks and was quite possibly the worst pain I have ever experienced in my life. My doctor tried Fioricet (which didn't do anything) and then put me on topamax to try to prevent them. I have stayed on the topamax (which gave me terrible side effects but was successful in keeping the headaches away for a month) but now I am finding myself faced with this monster once again. I am returning to my doctor yet once again to hopefully find something to relieve some of the pain, as the topamax does nothing to relieve any of the pain.

I am 30 years old and a pediatric oncology RN. I am very active and am training for my first marathon in November. I am a competitive horse back rider (three-day eventing). I am also newly married (June 2010) and my poor husband doesn't understand my pain and why I can be talking one minute and crying and holding my head in complete pain the next. My pain feels like there is an ice pick in my left side of my head which sometimes travels to the right side. The eye pain isn't always constant, but it is there as well.

I am really glad that I found this board and I look forward to reading the posts and knowing that I am not alone in this horrible pain. I am also hoping that there is light at the end of this tunnel and there are medications that are available to at least make the pain more tolerable on a day to day basis. ;D

Hi Dana

Welcome to the forums, I hope you find all you're looking for and more from here.

It looks like your doctor has concentrated on just a preventive, using Topomax. This is just one of the possible preventives with some people using Verapamil, lithium and others.

However preventives don't prevent every single CH, so some will get through. So what you also need is a way to abort a CH. What you'll find that a favourite here is using oxygen at high flow rates (15lpm or higher) via a non-rebreather mask. Using this many can kill a CH in under 10 minutes. You can read up more on the oxygen link on the left.

Imitrex injections are another popular way to abort a CH, with a good tip on their use on the left too to use a lower dose which is still effective.

Energy drinks containing caffeine (a vasoconstrictor) and taurine (calcium channel antagonist (like verapamil)) if drunk when you feel a CH starting can often reduce the intensity and duration.

Being able to stop most CHs from happening and then cutting those that still get through happening makes CHs a lot less controling and letting you control your life.

For your husband, why not direct him here? There are a lot of supporters here who share their experiences.

Also read lots of other posts here as there are endless posts that will give you more and more information about how to treat your CHs.

And if you've questions, just ask!

Hi Dana and Welcome!

I am sorry to hear you've been hit by this thing we call CH, wouldn't wish it on my worst enemy.

Mike did a wonderful job answering your Q's. 
Verapamil works for me and some here use it with lythium.   

I only have a few suggestions to add.

Have your spouse come here and join the board as well Dana.  We have many spouses and supporters of CH sufferers here who may be able to help him deal with what he is going through with this.  CH affects everyone we live, deal, and work with.

You can download this letter START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and print it out for him and for your work colleagues.  CH is nothing to sneeze at and is hard for everyone involved to deal with as I said.

**Avoid alcohol it is a trigger.

Here is a list of over the counter helpers until you get your regular meds working for your CH.  *** Ask your Doc about adding anything 1st to avoid any conflicts with other meds.***

4-Way Nasal spray or Dristan 12 Hour Nasal Spray helps with the annoying congestion.  ** Note ** Do not use this more than 3 days in a row!!  It can cause severe sinus problems.

Taurine and Caffeine drinks (RedBull if you like it) to help prevent a hit when you feel one starting.

Melatonin or an Allergy (Zyrtec aka cetirizine works for me) pill at night before bed to help avoid night time hits.

The herb Kudzu has helped a few as a prevent.   

Deep breathing through the milder hits can help too.

Hot/Cold Compresses Depending on your preference can help as well.

If you have the option, get the right doc--essential. So many lack training and experience with complex headache disorders.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Many of us have had to educate our docs in how to care for us--just the reality of the situation. So you  have the skills/orientation to do this. Start by print these materials both for your learning and to give to whatever doc you must use--as tools for discussing your options.
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PDF file, below.
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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....")
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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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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

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

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You MAY have to stop the training until you find out whether this is a factor for you....

Lancet. 1999 Sep 18;354(9183):1001-2.
Comment in:
Lancet. 2000 Jan 8;355(9198):147.

A new cluster headache precipitant: increased body heat.

Blau JN, Engel HO.

Exercise, a hot bath, or elevated environmental temperature provoked cluster headaches, within 1 h, in 75 out of 200 patients. This new observation accords with recognised precipitants--alcohol, histamine, and gyceryl trinitrate--perhaps via generalised vasodilatation or hypothalamic activation.

Publication Types:
Letter

PMID: 10501368 [PubMed]

[For some, 2mg ergotamine SL, before exercise will prevent an attack. Issue: is it available??]
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Immediately! avoid pain meds. They don't work for CH. No alcohol in any form until you get your condition under control and then we can help you refine your lifestyle around these issues.

Stay with the treatments outlined in these various articles, avoiding the temptation to seek alternatives, until you find that the well established treatments don't work for you. We have a long history of effective meds which are both effective and safe--i.e., avoid the stuff without a good track record for now (Top-max being one of them!)

As you have time, explore the buttons, left, starting with the OUCH site and the many links there.

Enough to get you started!

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You've been given some GREAT advice already so I'll just echo 2 points. Oxygen is the best, safest and most effective abortive I've ever used. My aborts run about 6-8 minutes. Read the oxygen tab on the left, the keys are pure oxygen to the lungs, started at the first hint of an attack. Best accomplished using a Non Re Breather Mask, and a flow rate of  at least 15 LPM. Re Breathers and nasal canulas are worthless.

My prevent med of choice is lithium. Blocks 60-70% of my attacks with very little in the way of side effects. I use 1200 mg a day while on cycle, if I didn't tell you i was on it, you'd never know.

Welcome to the board, so glad you found us.

Joe

Absolutely great advice. And please, please pay close attention to the O2 link. As a medical professional you know most use of O2 is cardiopulmonary, and as such, at such low and constant flow rates, generally ineffective for CHs. We so often hear O2 didn't work when what is really being said is, I didn't use it as recommended with the higher flow rates and right use of and correct equipment. Like many others, I'm a huge fan of O2 and it's my best buddy...next to my wife that is. Best of luck, and God bless! lance