Very timely, Bob, given recent threads.  And thank you.

Best,

George

Thank you, as always, for your thoughtfulness, Bob.

Went to see a neurologist about an hour away as mine is still out of town and will be for an unknown period of time.  He said, 'You have cluster?  Sure, I can help!'  I said, 'Yeah, and I'm pregnant.'  The look on his face was priceless!  He said, 'And you want me to fix you?!  I don't think I can!' 
Anyway, he was very detailed which was nice and did agree that these were clusters (duh) and then went though all the latest studies and treatments. 
I brought along a lot of my own papers and printouts of info and we went through these too. 
In all, he spent about 2 1/2hrs with me. 
He admitted that he had never met a pregnant women with clusters and neither had the neurologists that he called up on the phone for their input. 

It's a dubious honor to be so unique, I must say...

Tripans are out because while they would be fine to take once in a while, I would need them 1-2x/d for days and days - the restriction on uterine blood flow is considered too high a risk.  O2 is fine.  Intranasal lidocaine is fine (although doesn't work for me). 
Long discussion about preventatives - most are pregnancy category D to X - which are bad.  Verapamil is a C - there are a few case histories about fetal bradycardia and concerns about growth restriction secondary to low BP.  There is a single case history about fetal heart block and demise but this was in a lady also taking digoxin for her own heart failure issues so the verapamil can't be singled out as the problem. 
I had him call a Perinatologist at our state University Hospital and consult on the issue.  Per the Perinatologist (who really didn't seem to have much understanding of what CH is - he kept calling them 'migraines' - but does know his meds in pregancy), verapamil sometimes doesn't work well in pregnancy for HA (but again, he kept referring to migraines), but generally is safe if kept to low to moderate doses. 
The perinatologist did email me 2 articles which discuss pregnancy and CH.  I'll see if I can copy them (at least in part) below...

Interesting point is that the articles both mention tripans as 1st line abortive, but both the neuro and perinatologist advised against them...

In all, the perinatologist and neuro advised that I continue with the abortive treatment as I've been doing as best I can.  Neuro also gave me some reglan and phenergan tabs (usually used for nausea but may have some effect on migraine (note not studied in CH)) to see if they help.  For prevention, I've started on 40mg TID short acting verapamil and I'm to work up to 80mg TID and see how that's doing - if need higher doses, will discuss further with neuro and perinatology.


Treatment of Cluster Headache in Pregnancy and Lactation
Anne H. Calhoun & B. Lee Peterlin

Abstract Cluster headache (CH) is a neurovascular headache
syndrome characterized by headache attacks that
occur with a circadian and circannual periodicity. The
calculated prevalence of CH in reproductive-aged women
is 7.5 of 100,000 women. Although data suggest that CH
during pregnancy is a relatively rare condition, when it
does occur, attacks remain unchanged in character and
severity in the majority of patients. Thus, treatment of CH
in pregnant and lactating women may remain a significant
therapeutic challenge. This manuscript briefly reviews the
epidemiology of CH in women, and then focuses on
treatment options for both acute and preventative management of CH in pregnant and lactating women.

summary -
Thus, in the pregnant patient, oxygen is the most
appropriate first-line therapy for acute CH attacks, with
the nasal spray formulation of sumatriptan (Category B) or
nasal lidocaine (Category B) as appropriate second-line
therapies when required (Table 2).
Thus, in the pregnant patient, verapamil (pregnancy
Category C) and steroids (Category C) remain the preferred
options when preventive treatment is required (Table 2).


I think Bob already quoted the article below, but here it is again -

Treatment of cluster headache in pregnancy and lactation
Jürgens TP, Schaefer C & May A.
Cephalalgia 2009; 29:391–400. 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.

hahahaha - yeah.
I do think I intimidated him a bit though - he's a young doc and he'd never seen a women with CH and he'd never seen a pregnant woman with CH and he'd never seen a pregnant woman with CH who knew so much about CH. 

Essentially, I needed to know from him if there were any new or different treatments that were safer in pregnant women that what I already knew of or had spoken to other physicians about.   In essence, there weren't.  We did discuss trigeminal blocks but with the only moderate to poor success rate and risks, we didn't feel this was a great option either.  We touched on Zyprexa but he didn't feel that there was enough data about it and CH.

That left verapamil.  And he wasn't confident in it's safety in pregnancy as, being a neuro, he knows very little about pregnancy.  Again, he called a couple of other neuros to consult about the issue, but they didn't know either.  Luckily, I know a perinatologist at the Univ Hospital and he was quite open to consulting him once he knew that was an option. 
As I mentioned in a previous post, the perinatologist wasn't thrilled about verapamil prior to 16 weeks of fetal development but I'm about 15 weeks now and, quite frankly, at the end of my reserves of strength, so he thought it should be fine.  He didn't even think that the 16 week cut off was an absolute anyway.