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BigMatt

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Re: Electroshock therapy?
Reply #25 - Oct 27^th, 2010 at 11:54am

Well the doctor that does the electro shock thing called me last night at 8:30, sounds like a nice guy. I gave him my rundown and he seemed like he wants to help and said that there is a doctor up at UCSF that is doing some experimental stuff to treat chronic pain that may want to treat me. He said that it is a pacemaker type device that they put in your neck on the occipital nerve to control pain and that he can do some tests without surgery to see if this would work before they cut me, not sure about side effects or anything yet since I have not sat down with him. He said he is going to call my doctor today to talk to him about me and see what he thinks about this and then he will call the doctor up at UCSF to see if he if he thinks it would work for SUNCT and wants to add me to his test. My main worry is cash since none of this will probably be covered by my insurance but if this guy is running a trial there is a chance that it would be paid for and would not cost me anything so I am hoping that is the case. I am hoping to hear back from him in the next day or two and get the ball rolling on this, just hope it pans out and it helps I would hate to go through all this and have it not help at all. Hell he will probably say it won’t work for treating SUNCT anyway but I am going to keep my hopes up and pray a little that it will.

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wimsey1

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Re: Electroshock therapy?
Reply #26 - Oct 27^th, 2010 at 12:17pm

I'm a little confused here. I don't think electroshock therapy and occipital nerve stimulation via the pacemaker are the same thing. As I understand it, the occipital nerve stimulator was developed as a counterpart to the deep brain stimulus technique championed in Italy. It is also less risky, though still in trial and not approved. The results I remember reading were about as mixed as anything we try...worked for some and not for others. The pacemaker device allows you to deliver an electrical stimulation on demand at the start of an attack. It can be implanted externally for the trial period. That's what I remember about it. Let us know how things go, OK? Prayers for a pain free time. lance

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BigMatt

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Re: Electroshock therapy?
Reply #27 - Oct 27^th, 2010 at 12:24pm

I should have been clearer on this one, so originally my doctor wanted me to talk to this new doctor about having him do the electroshock thing to break my cycle and that was what he had talked to him about months back but after I read about all the side effects I decided I was not desperate enough at that time to take that kind of chance on the side effects. Fast forward to now and yes I am that desperate but when I called him he thinks the pacemaker thing may be a better way to go for what I am dealing with, who know after talking to my doctor he may switch back to the electro shock treatment who knows but either way I am just hoping we can try something new and that it has a good chance at improving my quality of life witch is in the dumper right now from this.
I will keep you posted on what transpires in the next few days and what they decide they want to try on me.

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BigMatt

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Re: Electroshock therapy? Updated
Reply #28 - Nov 12^th, 2010 at 11:24am

I finally got a call back from my pain doctor who I really trust and talked to me about the shrink with the shock treatment. He basically told me since we had tried everything else at this point that he really felt this was worth trying even if it is expensive, he said he thought it had a good chance of breaking my cycle. So I have started gathering all my medical records for the guy which I should have copies anyway but don’t and have emailed him saying I want to move forward with this. Now this is not as bad a treatment as I first thought and he said I can even drive myself home after so none of the loss memory or anything like that just hope it works. I talked to my girlfriend last night about it and shared my apprehension about it and I guess I am just worried about how I will feel or react if this does not work, it is kind of the last thing and I don’t have any other things no matter how crazy to try to make this go away. This could cost me $2,500 and not even help but more than the money it is the mental toll it will take that scares me if it does not work. I may not do it for a week or two since it will take five days to get my records and he wanted them first but it would be nice if it worked and I would have something so huge to be thankful for on Thanksgiving.
Wish me luck, I am fearful but hopeful at the same time.
Undecided

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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: Electroshock therapy? Updated Reply #29 - Nov 12^th, 2010 at 12:24pm Keep us posted. Praying for you. Jerry
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Charlie CH.com Alumnus Offline Happy to be here Posts: 18971 Jamestown, NY Gender:	Re: Electroshock therapy? Updated Reply #30 - Nov 12^th, 2010 at 10:03pm We're pulling for Matt and good luck. Damn it would be great timing too. Good luck Matt! Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Sorry Matt......I couldn't restrain myself. Charlie
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Grandma_Sweet_Boy CH.com Alumnus Offline What Goes Around Comes Around! Posts: 4496 Georgetown,Ontario Gender:	Re: Electroshock therapy? Updated Reply #31 - Nov 12^th, 2010 at 10:10pm Good Luck Matt. It's long past time for you to catch a break! Carol
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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: Electroshock therapy? Updated Reply #32 - Nov 13^th, 2010 at 8:14am You're in my thoughts Matt!
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JustNotRight CH.com Sponsor Offline CH version 15.0.8 member since 2005 aka GingerS224 Posts: 1300 Wilkes-Barre, Pa (USA) Gender:	Re: Electroshock therapy? Updated Reply #33 - Nov 13^th, 2010 at 8:39am Good Luck Matt ! I hope it works for you! Please let us know how it goes.
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BigMatt

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Re: Electroshock therapy? Updated
Reply #34 - Dec 6^th, 2010 at 11:52am

Well I went in on Saturday and got my shock treatment for the first time. First I will say if they do not use this thing for torture I would be surprised. He first did a bunch of testing to find my pain threshold and when he went past it, well it is hard to describe the pain it caused it was like having needles deep in your brain stabbing you and I mean hundreds of needles, if it was used on me for torture I would give up anything they wanted. I will say it helped my depression a lot my mood is better than it has been in a long time, it did not break my cycle at least not yet but I do think it made my headaches a bit better or it could just be the lack of depression not sure. It did cause the headache to transfer to my right side for a day but it moved back but seems less painful and I also now get a pain under my right eye that comes and goes but at least it did not cause me to have a severe headache and that was what the doctor feared it would do. The doctor did say that using this as an ongoing treatment just is not feasible at the cost, $315 a shot no insurance, but they do have a pacemaker type device that does this after being surgically implanted, now the problem is he does not know if they make one that you can use on demand or shut off and since my SUNCT comes in cycles it would need to be shut off so he is checking into it. Not sure if I would want this option, they would have to drill holes in my skull to put the wires on my brain not a pleasant thought to say nothing of the bad haircut I would have to live through. Grin

Well I go see my pain doctor today to talk about all this and will have to see what he thinks, I am sure he will want me to have a couple more treatments to see if this will break my cycle so I still have hopes that it will but also preparing for it not working but at least it helps my depression so it will be easier to deal with it not working on the cycle.
Cheesy

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Electroshock therapy? Updated Reply #35 - Dec 6^th, 2010 at 12:09pm Hang in there Matt, praying it's the break through you're hoping for. Joe
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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Electroshock therapy? Updated Reply #36 - Dec 6^th, 2010 at 12:37pm Matt, what about the side-effects since you had this done on Saturday? Memory loss? anything?
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BigMatt

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Re: Electroshock therapy? Updated
Reply #37 - Dec 6^th, 2010 at 3:04pm

No memory loss or anything like that, my scalp is a bit tender and when I scratch my head it hurts a bit and like I said it made my SUNCT headache move to the opposite side but it moved back but I am still getting pain under my right eye off and on but the pain behind my left eye is noticeably better so I am a bit hopeful at this point but only time will tell here. This is all very experimental since this doctor has only tried this therapy on people with migraine headaches and it was designed to treat depression that does not respond to medication so that is the insurance companies out as far as paying any of this but if it works for me I will gladly pay it and if not, well chock it up to yet another crazy thing I have done to try and make this go away, at least it has helped my depression. To be honest here I really did not think my depression was that bad but now that it is lighter I can look back and see that it was really bad so a bit of an eye opener.

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There is no stronger a person then one who can deal with brain pain and still function.

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