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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Anyone else in the GammaCore trials? http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1387819838 Message started by MarkG253 on Dec 23rd, 2013 at 12:30pm |
Title: Anyone else in the GammaCore trials? Post by MarkG253 on Dec 23rd, 2013 at 12:30pm
Hi, Is anyone else on here in the clinical trial for the GammaCore device? If so, how are you making out so far? I end the 1st phase today, with no luck yet. I'm hoping I got the sham device for this phase. I get a guaranteed working device tomorrow
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Title: Re: Anyone else in the GammaCore trials? Post by mjkbmw on Dec 26th, 2013 at 5:55pm
I just finished the 1st round and received the activated device. I had no relief with the 1st device, so far I've treated once with the new device and I never got a full blown headache but that just may be a coincidence.
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Title: Re: Anyone else in the GammaCore trials? Post by Imitrex4Breakfast on Dec 27th, 2013 at 5:23am
Please keep us updated. I'm very interested in hearing straight from a clinical patient if it works at all or not. I don't put much faith into published studies as they ALWAYS want more $$ for 'further studies'.
Thanks in advanced ! I4B |
Title: Re: Anyone else in the GammaCore trials? Post by Skyhawk5 on Dec 29th, 2013 at 12:03am
I'm currently in Phase 2 and finding no help from the device, in fact it seemed to trigger a Kip-9 the last time I used it.
Hope you have better results. I was told by the Nurse that Chronics are not doing well with the device. Don |
Title: Re: Anyone else in the GammaCore trials? Post by CH Brain on Dec 31st, 2013 at 9:51am
My specialist has had one sitting on his desk for 6 months waiting for me to try. We can run a well supervised one man clinical trial model and draft a case study in me - as a single patient.
Not an official Gammacore clinical trial, but it's there if I want to try it. I have not tried it yet, because I just don't think it will work. Risk vs benefit cannot be accurately assessed until more data is collected. My opinion: Must admit, I am reluctant to deal with a medical device company that makes a device that administers a finite number of "doses" of an electrical pulse, without making the device rechargeable, reusable, recyclable. I question the ethics (in our condition) of pre-designed obsolescence in electronics manufacturer's terms, with a carefully crafted "cost per abort", just below that of oral Sumatriptan (In Australia anyway). I've thoroughly inspected the patent drawings, designs and literature. I can see no reason why any internal components would have any wear, or become unstable. Rather than have the unit designed for use to a calculated "end of life", it would be so easy to have this unit last 20 years, using inductive coupling charging systems, like those found on your $20 electric toothbrush - and the SPG implant... But it's the Sunbeam toaster story all over again...sell more units, repeat customers... In my view, I see a big marketing push and to me it seems, some potential conflicts of interest between study author's, investor's interests and principal investigators behind this one too. If anyone wants a dossier on this device, let me know, I've gathered a fairly extensive collection of the available data on this device. I will post links here, if asked. To the OP, sorry I'm not much help here, unless I go into clinic and have my training, supervision and follow up with the unit. Perhaps my thorough investigation of the unit and subsequent decision to tough out the CH attacks, rather than risk this device, is feedback on the device, in a way. My 2 cents... Cheers, Ben. |
Title: Re: Anyone else in the GammaCore trials? Post by Mike NZ on Dec 31st, 2013 at 2:58pm wrote on Dec 31st, 2013 at 9:51am:
I wonder how hard it would be to take the unit apart and recharge it? I also suspect that from a design perspective making the battery over a year whilst retaining its charge is more complex than simply using a rechargeable battery. The rechargeable route is simple enough with either the ability to plug the device into a charger (just like I can with my phone, shaver, etc.) or use removeable batteries like my camera, headphones, mouse, tv remotes, etc. that can be either rechargeable batteries or not. I know that if I was designing such a device then a key design consideration would be for it to be able to use commercial off the shelf batteries such as AA, PP3 or similar that are available worldwide in every kind of shop from supermarkets to petrol stations. I'd not want anyone with CH to ever be in a position that they could not abort a CH due to their battery being flat. |
Title: Re: Anyone else in the GammaCore trials? Post by MarkG253 on Jan 3rd, 2014 at 9:17am
Just an update...... Unfortunately, no relief with the 2nd phase of the trial for me..... :(
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Title: Re: Anyone else in the GammaCore trials? Post by merle on Mar 9th, 2018 at 6:11pm
HI any updates on the GammaCore? I am 55 and still getting CH- seriously, when do they end!! I havent had any for 3 years, and BOOM out of the blue they hit again- I live in Colorado and my doc, is in Chicago, Dr Robbins- I decided to try a new doc in CO, since easier to get to an they can get me the device monday AM- I am going to try it anything is better then imitex shots, and all the other meds.
I do live in COlorado, so med marijauna is here, but not sure its helped people? thanks for thoughts on the gammacore- I will get 1 month for free- |
Title: Re: Anyone else in the GammaCore trials? Post by trsixy on Jan 9th, 2019 at 10:52am
I tried the gamma core FREE? Trial back in February 2018, just one device for a month. Didn't work for me. Last week, January 2019 they sent a bill to my insurance for $1760. They denied it of course. Couple hours of phone calls later I think it went away. We'll see. Anyway, there's no way a device like that with a limit on number of uses a month would suffice for me. I get way to many CH.
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