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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> DBS Update
        
(Message started by: CHTom on Jul 2^nd, 2006, 8:31am)

Title: DBS Update
Post by CHTom on Jul 2^nd, 2006, 8:31am

Three weeks after the voltage in my DBS device was increased to 5 volts, back in April, I have not had a single bad CH attack. I get the occasional 1 or 2 level attacks, which last for about 1/2-1 hour, but that's it. I can now drive without pain, read without pain and write without pain. It has been about 6 weeks since I had my last bad attack and my use of medications is virtually zero. Unless this is just a remission, which I doubt, I do believe that my days of excrutiating CH pain are over. It has been almost one year (Sept. will be one year) since I had my operation; this falls in line with the reports of the 40 or so other people who have had this operation. I have to continue to keep the battery in my chest and have it replaced every 2 years or so for the rest of my life, but that is a minor inconvenience compared to the suffering and loss of quality of life due to the pain. For those interested, I'll post how I am doing from time to time. I recommend this operation to those suffering from severe, chronic CH pain for which nothing else has worked. Contact me if seriously interested and I'll give you physicians' contact information.

Title: Re: DBS Update
Post by Sean_C on Jul 2^nd, 2006, 8:58am

Thats great news Tom ;;D Definately keep us posted too. ;;D

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

Title: Re: DBS Update
Post by MJ on Jul 2^nd, 2006, 9:53am

Hope it lasts forever Tom.

keep us posted.

Title: Re: DBS Update
Post by kayarr on Jul 2^nd, 2006, 1:20pm

Tom,

I feel so much joy for you! You are so brave on many levels!

My fondest Regards,
Kimberly

Title: Re: DBS Update
Post by Guiseppi on Jul 2^nd, 2006, 2:14pm

Jealous as all get out and happy as hell for you. I hope it spells the end of the beast fight for you.

Guiseppi

Title: Re: DBS Update
Post by Sandy_C on Jul 2^nd, 2006, 4:31pm

Congratulations Tom. Hope it keep working for you forever!

Sandy

Title: Re: DBS Update
Post by E-Double on Jul 2^nd, 2006, 6:33pm

[smiley=me&mb.gif]

Title: Re: DBS Update
Post by Bob_Johnson on Jul 2^nd, 2006, 7:13pm

Neurol Sci. 2005 May;26 Suppl 2:s138-9.

Deep brain stimulation and cluster headache.

Leone M, Franzini A, Felisati G, Mea E, Curone M, Tullo V, Broggi G, Bussone G.

Headache Centre, C. Besta National Neurological Institute, Via Celoria 11, I-20133, Milan, Italy. leone@istituto-besta.it

In recent years, neuroimaging data have greatly improved the knowledge on trigeminal autonomic cephalalgias' (TACs) central mechanisms. Positron emission tomography studies have shown that the posterior inferior hypothalamic grey matter is activated during cluster headache attacks as well as in short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing (SUNCT). Voxel-based morphometric MRI has also documented alteration in the same area in cluster headache patients. These data suggest that the cluster headache generator is located in this region and leads us to hypothesise that stimulation of this brain area could relieve intractable cluster headache just as deep brain stimulation improves intractable movements disorders. This view received support by the observation that high frequency stimulation of the ipsilateral hypothalamus prevented attacks in an otherwise intractable chronic cluster headache patient previously treated unsuccessfully by surgical procedures to the trigeminal nerve. So far, 16 patients with intractable cronic cluster headache (CCH) and one intractable SUNCT patient have been successfully treated by hypothalamic stimulation. The procedures were well tolerated with no significant adverse events. Hypothalamic DBS is an efficacious and safe procedure to relieve otherwise intractable CCH and SUNCT.

Publication Types:
Review

PMID: 15926012
=====================

Title: Re: DBS Update
Post by Kris_in_SJ on Jul 2^nd, 2006, 7:55pm

Congrats Tom!

I recently saw a segment on how DBS is help certain Parkinson's patients as well.

You are a true beta tester for the chronics here. Hope this continues to bring you long term relief. keep us informed.

Hugs,

Kris