Hi all!  I am glad to see new members signing up because I feel like I am the only one that gets these headaches.  Does any one suffer from Chronic Clusters?  I used to have episodic clusters starting about 25 years ago but it turned chronic 4 years ago.  When I am not having a cluster, I am having a migraine.  I just got out of the hospital for intractible clusters/migraines after 5 days of DHE45 IV treatments.  Still having headaches but at least not as severe and I am not an drugged up.  Any one having a similar time?  

Welcome,

     I dont have info in reguard to the treatment your on but i do want to welcome you to our site.


                                Coach Bill

I had chronic clusters for 10 years, then they stopped out of the blue for 3 years, I thought they were gone forever, then the came back for a 6 to 12 week cycle once or twice a year, spring and fall.

I haven't had your treatment, but I know others have, I know there has been many threads about it.

Welcome to the fun house.  :)

Sean..........................

Welcome to the family. There are people here that are cronic.

In order for those to assist you,you will need to post more specific details of your condition.

Your history,meds,do you have  Neuro or GP you are working with?

There are lots of good folks that will offer assistance.

All you have to do is ask. There is also lots of info on this site to help you educate yourself.

All the best.

Yep, I'm chronic (since 97) and have done the DHE (numerous times).

Get some O2 for home.... It's been a lifesaver for a lot of us (chronic and episodic) to abort. Go to the link on the left and read it. I can abort a big hit in no time flat without the use of meds and that's a lot better than I was doing a year ago.

I take topamax for a prevent and lead a pretty "normal" life (shut up Chuck).

Talk to us and let us know what you're taking and your history....

Hugs BD

Welcome home. Several people have posted positive results from the treatment you've described. 31 years and I've managed to stay episodic...although the last one went 8 months and i was starting to wonder! :(

Do look into the oxygen. It's been a great tool for many and as you know, you're tool bag can nevr be "too full" when the beast comes calling. When you get a chance do post what meds you've gone through. Maybe we can throw some new ideas at you!

Joe

Sounds as though you have a good headache doc. Here are a few items I've collected:

J Headache Pain. 2005 Oct;6(5):417-9. Epub 2005 Aug 1.  


Warfarin as a therapeutic option in the control of chronic cluster headache: a report of three cases.

Kowacs PA, Piovesan EJ, de Campos RW, Lange MC, Zetola VF, Werneck LC.

Headache Section, Neurology Division, Internal Medicine Department, Hospital de Clinicas, Universidade Federal do Parana, Rua General Carneiro 181/1236, 80060-900 Curitiba, Brazil. cefaleia@hc.ufpr.br

Chronic cluster headache remains refractory to medical therapy in at least 30% of those who suffer from this condition. The lack of alternative medical therapies that are as effective as, or more effective than, lithium carbonate makes new therapies necessary for this highly disabling condition. Based on a previous report, we gave oral anticoagulants to three patients with chronic cluster headache. Two of them remained cluster headache-free while taking warfarin. In the third patient, the use of warfarin for three weeks initially increased the frequency and intensity of cluster headache attacks but subsequently induced a prolonged remission. In spite of the paucity of data available, oral anticoagulation appears to be a promising therapy for chronic cluster headache.

PMID: 16362716  
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J Headache Pain. 2007 Sep;8(4):236-241. Epub 2007 Sep 24.
Botulinum toxin type-A therapy in cluster headache: an open study.

Sostak P, Krause P, Förderreuther S, Reinisch V, Straube A.

Department of Neurology, Klinikum Großhadern, Ludwig-Maximilians University, Marchioninistr. 15, 81377, Munich, Germany, Petra.Sostak@med.uni-muenchen.de.

The objective of this open single-centre study was to evaluate the efficacy and tolerability of botulinum toxin type-A (BTX-A) as add-on in the prophylactic treatment of cluster headache (CH). Twelve male patients with episodic (n=3) or chronic (n=9) CH, unresponsive to common prophylactic medications, were treated with a cumulative dose of 50 International Units (IU) BTX-A according to a standardised injection scheme into the ipsilateral pericranial muscles. One patient with chronic CH experienced a total cessation of attacks and in 2 patients attack intensity and frequency improved. In another patient with chronic CH typical attacks were not influenced, but an ipsilateral continuous occipital headache significantly improved. Patients with episodic CH did not benefit from BTX-A treatment. Tolerability was excellent. THESE FINDINGS PROVIDE EVIDENCE THAT BTX-A MAY BE BENEFICIAL AS AN ADD-ON PROPHYLACTIC THERAPY FOR A LIMITED NUMBER OF PATIENTS WITH CHRONIC CH.

PMID: 17901920 [PubMed}
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Headache. 2007 Dec 7 [Epub ahead of print]
Clomiphene Citrate for Treatment Refractory Chronic Cluster Headache.

Rozen T.

Michigan Head Pain and Neurological Institute, Ann Arbor, MI, USA.

A treatment refractory chronic cluster headache patient is presented who became cluster-free on clomiphene citrate. The author has previously reported a SUNCT patient responding to clomiphene citrate. Hypothalamic hormonal modulation therapy with clomiphene citrate may become a new preventive choice for trigeminal autonomic cephalalgias. The possible mechanism of action of clomiphene citrate for cluster headache prevention will be discussed.

PMID: 18070056
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Headache. 2009 Feb;49(2):286-91.
Intravenous lidocaine in the treatment of refractory headache: a retrospective case series.

Marmura M, Rosen N, Abbas M, Silberstein S.

Jefferson Headache Center-Department of Neurology, Thomas Jefferson University, Philadelphia, PA, USA.

BACKGROUND: New treatments are needed to treat chronic daily headache (CDH) and chronic cluster headache (CCH). New treatments are needed to treat this population and intravenous (IV) lidocaine is a novel treatment for CDH. OBJECTIVE: The aim of this study was to examine the use of IV lidocaine for refractory CDH patients in an inpatient setting. METHODS: This was an open-label, retrospective, uncontrolled study of IV lidocaine for 68 intractable headache patients in an inpatient setting. We reviewed the medical records of patients receiving IV lidocaine between February 6, 2003 and June 29, 2005. RESULTS: Pretreatment headache scores averaged 7.9 on an 11-point scale and posttreatment scores averaged 3.9 representing an average change of 4. Average length of treatment was 8.5 days. Lidocaine infusion was generally well tolerated with a low incidence of adverse events leading to discontinuation of treatment. CONCLUSIONS: This study suggests benefit of lidocaine treatment and the need for further prospective analyses. The mechanism of lidocaine in treating headache is unknown.

PMID: 19222600 [PubMed]
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Headache. 2008 Sep 9. [Epub ahead of print]
Sphenopalatine Ganglion Radiofrequency Ablation for the Management of Chronic Cluster Headache.

Narouze S, Kapural L, Casanova J, Mekhail N.

Cleveland Clinic Foundation-Pain Management Department, Cleveland, OH, USA.

Objectives.- Chronic cluster headache patients are often resistant to pharmacological management. Percutaneous radiofrequency ablation (RFA) of the sphenopalatine ganglion (SPG) was shown before to improve episodic cluster headache but not chronic cluster headache. We were interested to examine the effect of such intervention in patients with intractable chronic cluster headache who failed pharmacological management. Methods.- Fifteen patients with chronic cluster headache, who experienced temporary pain relief following SPG block, underwent percutaneous RFA via the infrazygomatic approach under fluoroscopic guidance. Collected data include demographic variables, onset and duration of the headache, mean attack intensity (MAI), mean attack frequency (MAF), and pain disability index (PDI) before and up to 18 months after procedure. Results.- At 1-, 3-, 6-, 12-, 18-month follow-up, the MAI was 2.6, 3.2, 3.2, 3.4, 4.2, respectively (P < .0001, P < .0001, P < .0001, P < .0005, P < .003, respectively). The PDI improved from 55 (baseline) to 17.2 and 25.6 at 6 and 12 months respectively (P < .001). The MAF improved from 17 attacks/week to 5.4, 6.4, 7.8, 8.6, 8.3 at 1-, 3-, 6-, 12-, 18-month follow-up visits (P < .0001, P < .0001, P < .0001, P < .002, P < .004, respectively). Conclusion.- Our data showed that percutaneous RFA of the SPG is an effective modality of treatment for patients with intractable chronic cluster headaches. Precise needle placement with the use of real-time fluoroscopy and electrical stimulation prior to attempting radiofrequency lesioning may reduce the incidence of adverse events.

PMID: 18783451 [PubMed]-