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Dual Neurostimulator (Read 2023 times)
Blondie Ash
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Dual Neurostimulator
Sep 3rd, 2016 at 8:32am
 
Hello everyone I just wanted to inform my fellow cluster heads about a successful surgery I received last year in July. It’s called a Dual Neurostimulator. I went to the Reed Migraine Center in Dallas, TX. On their website the procedure is called the Reed Migraine Procedure, or Implantation of peripheral nerve stimulator. Please google it; the Reed Migrane Center.
What is an implantable Neurostimulator?
An implantable neurostimulator is a medical device designed to interrupt the pain signals that cause headaches and head pain. Tiny leads, or wires, are implanted just beneath the skin at targeted areas above specific nerve regions in the neck and forehead. The leads pass down the body and connect to a small battery, implanted in the upper chest. Once turned on, the implanted neurostimulator generates soothing electrical impulses to the targeted regions, effectively stopping the pain at its source. The battery lasts up to ten years, and can be easily replaced through a quick outpatient procedure. The implantable neurostimulator is completely reversible and can be removed at any time.
I would be so happy and delighted to answer any questions you may have. For I know what it is like to suffer for so long with chronic cluster headaches. I’ve even been so terrified of writing this entry, as a fear of them coming back. So, my apologies for not informing you all sooner. If I can help anyone else suffering through this ugly mean deliberating and life stealing disease, then that is my goal. For I have suffered from them first hand and know how much they can ruin your life. First, here’s my background. I was episodic and became chronic a few years later. I was on a preventative medication called Verapamil ER at 240 mg twice a day, had used Oxygen, Maxalt and Imitrex as abortive medications for when the attacks occurred. I would get cluster headaches about 3 or 4 times a year lasting from 2 weeks to a month and would usually go away with Prednisone tapers and raising my Verapamil. They always came when we changed the time and I was rather stressed out. Then, I was working at a hair salon and believe the chemicals and the stress of the job contributed to my headaches. I was having 10-12 cluster headaches a day/night. I became desperate and researched as much as I could and as a result I tried anything anyone would suggest to me. Here are a list of things I tried:  Botox, multiple nerve blocks, the suggestion of Vitamin D3 regime by Batch (which I learned here), seeds, GABA, multiple homeopathic remedies, acupuncture, past last regressions, positive affirmations, meditation, Depakote, Topamax, Relpax, Nortiptyline and my last cycle 3 rounds of Prednisone. It then became 2015 and I was still going through this long cycle, I tried Topamax and my Verapamil had been pushed up to 300 mg  twice a day with no relief and I could not do anymore prednisone tapers according to my doctor’s advice. Depakote was also added, but they only made them worse. His last effort was my suggestion to try Lithium or to try this new implantable neurostimulator.         
I would recommend my doctor in South Florida; Dr. Frank Conidi @ fxneuro.org
3 CONVENIENT FLORIDA LOCATIONS:
Treasure Coast :: Palm Beach :: Broward
1.877.648.4762 - 1.772.337.7272
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Mike NZ
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Oxygen rocks! D3 too!


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Re: Dual Neurostimulator
Reply #1 - Sep 3rd, 2016 at 4:12pm
 
Great to hear that it is working well for you.

Is the neurostimulator activated all the time or do you turn it on when you need it? If so, how?

Is it totally effective, i.e. no CHs or do you get some low level ones (shadows)?

Any other effects?
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Blondie Ash
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Re: Dual Neurostimulator
Reply #2 - Sep 5th, 2016 at 10:00am
 
I turn to turn it on. I have a remote control which turns on the stimulator. The battery is in my chest and I charge both the remote control and battery once a week.

I have only had a few really bad headaches, where I had to use my oxygen tank but so far I have been blessed. They put the censors where you ask them to. So, mine were placed near my right temple, back of the neck where the headaches began and in the back all on my right side where I always had them.
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Blondie Ash
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Re: Dual Neurostimulator
Reply #3 - Nov 19th, 2016 at 8:54am
 
Update... I am a chronic cluster suffer who received the dual neurostimulator last July. 4 weeks ago started to get headaches, and the last 3 days they have gotten worse. Went to see my neurologist ad started me on prednisone, thinks I might be going through an episodic period. I went back through my headache journals and this time is when my headaches first started and they always happen around the time change. I was advised to keep my device on all the time all day and all night. I am going to get it re-programmed in 2 weeks to change the settings and reprogram it to make it stronger. These clusters are smart even to out smart a device, little buggers. So, it's back to oxygen and imitrex until fingers crossed they go away. Well, I just wanted to give everyone an update. I still wouldn't take back having the surgery though the device has helped me a lot. Weird how they work with some of the headaches and not with others.
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