Cephalalgia. 2014 Mar 24.
Complete alleviation of treatment refractory primary SUNCT syndrome with clomiphene citrate (a medicinal deep brain hypothalamic modulator).
Rozen TD.
Author information Geisinger Health System, Department of Neurology, Geisinger Headache Clinic, PA, USA.
Abstract
OBJECTIVE: To report the first ever case of primary short-lasting unilateral neuralgiform headache attacks (SUNCT) syndrome completely responsive to clomiphene citrate.

METHODS: Case report.

RESULTS: SUNCT is a primary headache disorder marked by frequent attacks of one-sided headache with cranial autonomic associated symptoms. When SUNCT is deemed medicinally treatment refractory, it can cause tremendous patient-related disability. Surgical treatment options are available including hypothalamic deep brain stimulation, occipital nerve stimulator placement or arterial decompression surgery, but these procedures carry significant morbidity. A patient presented with a 10 month complaint of multiple, daily short-lasting, right-sided headaches each lasting from 60 to 120 seconds in duration and occurring from 100 to 200 times per day. The head pain was associated with ipsilateral eyelid ptosis and conjunctival injection. The patient was diagnosed with SUNCT but was unresponsive to multiple recognized medicinal treatments. He had complete alleviation of his attacks with clomiphene citrate, a synthetic, non-steroidal, ovulatory stimulant that directly binds to hypothalamic estrogen receptors. The clomiphene was tolerated without any adverse events. A putative mechanism of action for clomiphene in the prevention of SUNCT will be presented.

CONCLUSION: Clomiphene citrate is a unique treatment for SUNCT and appears to be very safe and effective.

KEYWORDS: Clomiphene citrate, SUNCT, cluster headache, estrogen, hypocretin, hypothalamus, orexin

PMID:24662321[PubMed]
========================
In a reply to this report (below) we have a link to the full article reporting this finding. In the full article is a brief mention of his med being effective on one Cluster case, this dating from 2008. A search on the link beween Clom and Cluster didn't locate additional reports on use with Cluster. So, looks like we'll have to wait and see if Dr. Rozen does some additional trials.

The mode of action is on the hypothalamus which links us back to Goadsby's critical findings of the apparently causal link between Cluster and the hypothalamus. We wait....

Very interesting.

Is it known what dosage achieved remission and whether it is a male or female patient?

Found the entire article. Author claims that the treatment is also effective for CH.

---

So has anyone tried this medication?  I am considering requesting it!

These are repors of the earliest experiments; nothing yet established; no approvals for general use. Just reporting something of interest

My doctor has refered to it as "voo-doo medicine at this point but hasnt ruled it out.  It claims to have little to no side effects unlike traditional testostorone therapy which has many dangers.  Given my current level of frustration with this cycle so far I may still request request it. 

Sooo....how do you even go about getting this from the doc?

Would I just show him the article and ask him to trust me?

That's what I did and his response was to basically continue to keep pushing me to the high doses of the proven to work Topamax and verapamil.   Which I might add aren't working that well.  If I could find out dosing info and a way to get it black market style I would try it on my own based on the lack of side effects reported however. 

Working thru both the variety of meds and dosing for Cluster is frustrating. Patience is essential whereas working behind your doc's back is simply poor judgment.

If you can't work with/trust your guy, find another doc, preferably a headache specialist.

Or, consider print out the PDF, below, and use it as a discussion tool with him.

---

look into medical marijuana not intrusive at all. my name is craig I have had these headaches for 30 years quit smoking tobacco started with the marijuana medicate daily....glad to say I have been headache free for 4 years now..life is great again and I do not worry anymore about and episode starting... thank god ...no more beating on my head.

I, a 25 y/o, suffer from SUNCT and am on 200 mg of Lamictal which has eliminated most of my triggers and helps some with the frequency of attacks, but it is far from "helping" I'd say. I can't push any further due to side-effects...and every other anticonvulsant I've added on top of it has been a nightmare with side-effects & doesn't help. I haven't had the condition too long, however with time the pain level keeps increasing dramatically, as does the attack frequency.

I showed this article to my neurologist, who is fantastic, and she agreed to give the clomiphene a whirl (and seemed very positive about the whole thing!). I started it Monday, 50 mg a day. So far, my attack frequency has decreased and the average pain level has lessened (still get the bad ones of course).

Of course, from my experience, there is no rhythm or rhyme in the land of SUNCT. It can be terrible one week, and then the next week may be great (in relative terms, at least!). The time of day the most frequent and painful attacks occur shifts typically each week. I never can tell what my head is going to be doing any given day or week. Because of this, I don't know whether or not the clomiphene is actually benefiting me or not. I'm really hoping it is. The thing is, I really do THINK it is. If it is, I am forever in your debt Mr. Bob Johnson and Dr. Rozen.

If you all would like, I will keep you posted on my progress with this treatment. I have a feeling if it works for SUNCT, there is at least some possibility that it will be very effective for cluster if Dr. Rozen's proposed mechanism is true.

Oh, and I always get a massive amount of side effects from medications. This clomiphene has been very good to me in that regard, except for two things. One (this may be unrelated, but I am pretty sure its the medicine) is that I'm having lower back pain/spasms, as well as foot cramps. Two...and this started last night but has gotten really bad today...my testicles have been HURTING like no other. Just pain with the occasional "slam" like I've been surprise-slapped down there. This has been occurring in both of them. Oh well. They can't all be winners now, can they?

Please keep us posted to your progress.  I do know SUNCT is not quite the same as cluster but I also have requested the clomid from my Neuro with not so open to try results I am currently suffering through 800 mg's a day of Topamax.  He considered that a "voodoo medicine"   So the moe information we can gather proving it works the better.   

Thank for sharing your experience. 

E

800 mg Topamax? God, I'm on 50 mg for migraine & I can't tolerate that trash!

Whilst I really don't like the drug either. I do find that after a few days most of the annoying side effects wear away. 

It has allowed me several nights of pain free sleep which was really needed. 

E