Cluster headaches

Dear Doctor,

   I am a 30 y.o. female who has been suffering with cluster h.a.'s for 15  yrs. I was diagnosed as having cluster h.a's approx. 6 yrs ago by Stamford H.A. Clinic. Prior to this I have had surgery for a deviated septum which the M.D. thought was causing my h.a.'s. I have had allergy testing, CT scan and labwork-all were negative. The h.a's can last up to 3 wks. and occur everyday during that period. I usually have about 3-6/day. They begin at the same time to the second everyday. My symptoms include severe right sided eye pain (always on right side) which feels like a continuos knife jab,swelling and redness of right eye, drooping eyelid, right sided nasal congestion, hot flashes with profuse sweating, hyperventilation, tingling feet and hands, vomiting mucuos and confusion. Ea. h.a. last approx. 1 hr.. The  pain is so severe that I often wish I were dead during a h.a. I also suffer from tension h.a's everyday. I am currently being treated at UConn Health Center. I have been on so many meds over the years and some have been effective but the effect only last a few months. I am currently taking Depakote 1500 mg and Calan SR 240 mg a day. The frequency of m h.a's has decreased but I suspect it will only be a matter of time before the meds no longer work. I use Imitrex injections which stop m h.a. in 5 minutes but the h.a. always returns and since I can only administer 2 shots/24hr., I end up in the emerg. room. I take percocet which make it a little bit bearable (but not much)  I also inhale oxygen-the only problem is that when I remove the mask my pain comes right back. Lidocaine does not help me. For my daily h.a's I use to take Elavil which was effective but I was getting palpitations. I am currently not taking preventative meds for tension h.a's b/c my Dr. wants to get the clusters under control first. OTC meds do ot get rid of my tension h.a's and Fiorcet works but it makes me dizzy so I don't take it. I have questioned my Dr. about DHE I.V. therapy but he said it was ineffective in treating cluster h.a. I would appreciate any suggestions you or anyone has to offer.
                            Thank you,  

[CCF neuro MD MM]

It certainly sounds as thought the diagnosis is well established in your case, and you have been tried on many of the therapies available. When faced with such a refractory problem often the only help we can offer is to suggest the names of drugs which in our experience have had a beneficial effect in isolated cases. The standard therapies have not worked in your case so these drugs are not necessarily licensed for use in cluster headaches.
Two agents with which there has been soime success are Neurontin and Zanaflex.
Neurontin is marketed for  use in epilepsy but is very effective in many pain syndromes. Zanaflex is used to treat spasticity but success in some cases of cluster headache has been reported.
I hope these ideas will be of some help to you.