I am 34 and have been suffering from CH since I was 21 (chronic).  I have put off starting a family all this time because I am so afraid of the pain and not being to take anything.  

If anyone has any advice, I would love to hear it, because I'm getting to that age where I need to make a decision.  

J Neurol Neurosurg Psychiatry. 2006 Jan 11  


Cluster headache in women - relation with menstruation, use of oral contraceptives, pregnancy and menopause.

van Vliet JA, Favier I, Helmerhorst FM, Haan J, Ferrari MD.

Medical Centre Haaglanden, Netherlands.

Abstract In contrast to migraine, little is known about the relationship between cluster headache and menstrual cycle, oral contraceptives, pregnancy and menopause. We performed a population-based questionnaire study among 224 female cluster headache patients, and studied the possible effect of hormonal influences on cluster headache attacks. For control data, a similar but adjusted questionnaire was sent to healthy volunteers and migraine patients. We found that menstruation, use of oral contraceptives, pregnancy and menopause had a much smaller influence on cluster headache attacks than in migraine. Cluster headache can, however, have a large impact on individual women, for example to refrain from having children.

PMID: 16407458  
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Re: Clusters and Pregnancy
« Reply #1 on: Oct 29th, 2004, 8:37am »  

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Issues about med effects are sufficiently complex and  fluid that I would work closely with your ob doc and, ideally, with a headache specialist (acting as a consultant).

Given where you are in your pregnancy, you might print out this message and show to your doc.
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CNS Drugs. 2003;17(1):1-7.  


Safety of sumatriptan in pregnancy: a review of the data so far.

Loder E.

Harvard Medical School, Boston, Massachusetts, USA. eloder@partners.org

The high prevalence of migraine in women during their reproductive years means that new drug treatments for migraine, such as the serotonin 5-HT(1B/1D) receptor agonists (the 'triptans'), are likely to be widely used by women of childbearing potential. Scrutiny of these agents in an effort to detect any signal of teratogenicity is thus important. A systematic review of the medical literature was conducted to identify information regarding the safety of sumatriptan during pregnancy. This agent was chosen to be investigated because it has been available for the longest and is the most widely used of the triptan class. Information was obtained regarding the impact of migraine on pregnancy outcome, and data on sumatriptan use in pregnancy were obtained from animal studies, preclinical drug trials, postmarketing surveillance efforts, prospective pregnancy registries, national birth registries and teratogen information services. Synthesis of information from these sources is sufficient to rule out a large increase in birth defects from sumatriptan use during pregnancy and is reassuring for cases where inadvertent exposure to sumatriptan during pregnancy has occurred. However, current information is not sufficient to rule out small increases in the risk for birth defects. For this reason, caution should be exercised in making a positive recommendation for the use of sumatriptan during pregnancy.

Publication Types:  
Review  
Review, Tutorial  

PMID: 12467489 [PubMed]  
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I checked drug info on medscape.com and this is o.k. for limited use in pregnancy.  

1: Headache 2001 Sep;41(:813-6  


Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.



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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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OTC meds are not very helpful with cluster, as you know, but may be one of the few options available to you. Some folks have good luck aborting/easing an attack by applying an ice pack to the pain site. Others find very hot water also works; others have used a hair dryer blasting the pain site works! No predicting; just try.

I am sorry you have cluster headaches, but i am glad I am not alone!
I am too thinking about having kids soon, but haven't because of my headaches.
They of course don't know much about this mad illness, even less here in Denmark, my doctors thinks i am crazy, and so did I for some time! BUT NO MORE! .. I am deffenently having kids no matter what!

I can sometimes focus real hard on not having any pain breathe and sing a song over and over in my head, for a short term break from this awefulness, it's real hard, but sometimes it works!

Good luck to you!

Laerke

Hate to butt in on what is clearly not the male domain..

If the beast wins in any aspect of your life...it sucks. I'd hate to see someone deprived of a family cuz of the bastard.......hoping you're succesful. My 2 girls...grown now...have been the light of my life. Good luck.

Joe

I don't have a uterus but I do have CH....

Never let this be what is preventing you from doing ANYTHING worth while in your life.

The fact is that many of us chronics live life as if we don't deal with anything at all. It's a disruption at times but it does not slow us down.

It appears to me that you need to find a way to get O2 to work for you in addition to finding better methods of coping.

Clusters will not get in the way of your child rearing.
Child rearing may get in the way of your clusters
I used to rock my daughter while huffing oxygen and it would put her right back to sleep.

If all else in life is right then CH shouldn't effect this specific decision.

Hugs to you

Eric

More literature: Jürgens TP, Schaefer C, May A.: Treatment of cluster headache in pregnancy and lactation. Cephalalgia. Review. Published Online: 19 Jan 2009.

Link (abstract): Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Perhaps your doc can get the full article or check with a library.

pf wishes,
Friedrich
 

I found this thread b/c I too am a CH sufferer.  I put off having children til I found the "shroom thereapy"... which fortunately worked great for me for three consecutive cycles to abort. 

So finally, at 35, hubby and I decided to try get pregnant and squeeze it in before my very predictable cycle start (was on a 13-14 mth schedule.. sometimes 15 mth).  It worked!  But the expected cycle never came... and a year later... not cycle.  SO we went for #2.  Now I'm 26 wks pregnant and on my 2nd night of a new cycle... and scared!  Wondering how I'm going to get through this.

I'm just here to listen and observe posts... and collect any resources I can... i have a new ob from last pregnancy and this one doesn't know about the CH.  I just never brought it up to her b/c I've been doing so well.... will see her on monday and fill her in... and hopefully get some answers and advise.

My cycles have been nighttime only for many years.  This one started last night, but I got one this afternoon too - during daylight.  Weird for me and now I'm so scared that my 2yr old daughter will at some point have to see me like that.  At least when they come at night I can lock myself in the basement where no one can see me rolling around on the floor, pacing or hear me screaming.  I'm a stay at home mom so I'm really worried.  I can't dose my normal stuff while pregnant. 

Scared to go to sleep.  Just scared in general.  My cycles before I started the alternative treatment were usually 12 - 16 wks.  I don't know how I'll make it that long now.  O2 never worked for me.  Guess I'll have to see what the ob says this week.