I'm Katrina, I've been having "headaches" since I was 18 years old (8 years now) and just last year during a "headache" I was searching online trying to distract myself and found an article on cluster headaches and was amazed that my symptoms were an exact match. In the past eight years doctors just prescribed muscle relaxers and such assuming they were migraines, never attempting to diagnose otherwise even when I told them that I wasn't sensitive to light or sound and the pain was unbearable and lasted everyday for up to a month then went away for another 4-6 months (which I'm sure you all have similar stories) finally I practically yelled at a doctor telling her this wasn't the same and my findings on cluster headaches when she suggested a drug called meloxicam which 90% of the time actually helped prevent my attacks, I couldn't believe this was working for me. I was at the point where I was afraid to leave the house in fear of getting one while i was out.
Family members never understood, and they still do not understand the pain I suffer thinking it's caused by allergies or caffeine or not wearing glasses, and that I am just overreacting. But now I have a new issue, I just had a baby two weeks ago and can't take the medication cause it will pass through the breast milk and of course a new cluster cycle has just started! The only relief I have is either dunking my head in a sink filled with freezing cold water or taking a burning hot shower to help relieve the pain.   :-/

Hi Katrina,

Your experience with doctors and people around you is one so many of us can relate to unfortunately.  :(

BUT it's a good thing you came here. We got some ideas for ya.  8-)

High flow, non rebreather O2 is a fantastic and non toxic abortive. Check out that oxygen info link to the left of this page to get the skinny on that.

If a vitamin D3 regimen is OK while breastfeeding the baby (I have no idea whether it is), you might want to check out that topic here, as some are reporting impressive prevention results with it. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

And continue to hang around for plenty of more helpful info here.  :)

There is surprisingly little medical literature in this area.

This is the only current item I have. Suggest you print it out for your docs and/or you can take it to a good library and they can obtain a full print of the article for nominal cost. If you are near a large-ish hospital they may have a medical library which could supply you.
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Cephalalgia. 2009 Jan 19. 
Treatment of cluster headache in pregnancy and lactation.

Jüergens TP, Schaefer C, May A.
Department of Neurology, University of Regensburg, Regensburg, Germany.

Treatment of cluster headache in pregnancy and lactation. Cephalalgia 2009. London. ISSN 0333-1024

Cluster headache is a rare disorder in women, but has a serious impact on the affected woman's life, especially on family planning. Women with cluster headache who are pregnant need special support, including the expertise of an experienced headache centre, an experienced gynaecologist and possibly a teratology information centre. The patient should be seen through all stages of the pregnancy. A detailed briefing about the risks and safety of various treatment options is mandatory. In general, both the number of medications and the dosage should be kept as low as possible. PREFERRED TREATMENTS INCLUDE OXYGEN, SUBCUTANEOUS OR INTRANASAL SUMATRIPTAN FOR ACUTE PAIN AND VERAPAMIL AND PREDNISONE/PREDNISOLONE AS PREVENTATIVES. IF THERE IS A COMPELLING REASON TO TREAT THE PATIENT WITH ANOTHER PREVENTATIVE, GABAPENTIN IS THE DRUG OF CHOICE.

WHILE BREASTFEEDING, OXYGEN, SUMATRIPTAN AND LIDOCAINE FOR ACUTE PAIN AND PREDNISONE/PREDNISOLONE, VERAPAMIL, AND LITHIUM AS PREVENTATIVES ARE THE DRUGS OF CHOICE. As the individual pharmacokinetics differ substantially, adverse drug effects should be considered if unexplained symptoms occur in the newborn.

PMID: 19170693
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Given the complexity of this area, other sources recommend working with a headache specialist as well as your ob/gyn.
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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.

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

This is the oxygen link Bejeeber spoke of. I'm a 33 year episodic sufferer, I can abort an attack i about 6-8 minutes just by breathing pure oxygen. No drug interactions to worry about, no worry about harming the baby, quick, effective, not much about it to dislike. Read the linbk as oxygen must be used correctly or it will not work at all,

Glad you found us, congrats on the new baby.

Joe

Since you are breast feeding, you might want to hook up with a local laleche league representative as well. Or with a nurse midwife. Both may be able to help you connect properly with a course of intervention while you are breast feeding. The meds Bob listed aren't specific to CHs alone so there may be some advice available on their effect on your breast milk. Also, this can be a time of added stress on you and your baby. Women can have an adverse reaction to stress and the production of breast milk. The more you feel on top of things, the better it will be for you both. So...congratulations, and God bless. lance

Hi Katrina and Welcome!

As mentioned already get the O2 ASAP!!  It's not a prevent but is one hell of an abortive and won't cause you're little one any issues.

Just got off my O2 tank myself...  [smiley=hammer.gif]
been having a WHOPPER of a time with CH attacks lately. 

Good Luck!

wow thanks everyone for the advice I will definitely look into it all thanks again so much, it's refreshing to know that there are people who understand what I'm going through.