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Gustav

Deep brain stimulation

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Hello everybody! 

I'm verry glad to see this forum finally being active again. I have tried to register for months but never got a confirmation email untill now. 

But what i would like to talk about is deep brain stimulation. I know brain surgery sounds scary and risky at first. But after testing a bunch of different anti-seizure medications i'm absolutely sure our visual disturbances is related to constant overactivity in our visual cortex. 

I have also been talking to people recently that have done neurofeedback and i know one guy in particular that's after his sessions have been completely symtom free after some of his sessions. 

I would like to compare deep brain stimulation as a permanent neurofeedback session but with more accuracy and better chances of being permanent cured. 

I've gonna suggest this to my neuro in the following weeks and see what he has to say. I'm currently doing bunch of brain scans. And if we are able to find the exact area to cut i would do the treatment in a hearthbeat. 

I know this have been discussed before on this forum but a long time ago. What are your thoughts now? Do you see this as a solution to this hell? I'm verry intressed about hearing what other people think. 

All the best//Gustav

Edited by Gustav
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I'm very interested in deep brain stimulation which seems to have some potentia, more so perhaps than any currently available pharmaceutical treatments.  No idea how you go about trying to find a neurologist/doctor willing to try this for HPPD.  Presumably they need more info about which part of the brain to target?  

Very encouraging that you've heard of some having some relief from symptoms with neurofeedback.  I'm thinking of trying out a clinic in London. It's expensive, but I kind of figure desperate times require desperate measures, and I'll be able to report back to the forum how I get on.

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On 12 januari 2017 at 10:12 PM, Gold Panda said:

I'm very interested in deep brain stimulation which seems to have some potentia, more so perhaps than any currently available pharmaceutical treatments.  No idea how you go about trying to find a neurologist/doctor willing to try this for HPPD.  Presumably they need more info about which part of the brain to target?  

Very encouraging that you've heard of some having some relief from symptoms with neurofeedback.  I'm thinking of trying out a clinic in London. It's expensive, but I kind of figure desperate times require desperate measures, and I'll be able to report back to the forum how I get on.

Exactly, desperate times need desperate measures. For the actual brain surgery i think they could verry well target the area using QEEG or PET-scan. 

Neurofeedback is great too. I'm actually going to London in March for a meeting with Dr Goadsby (the VS research leader) so i'm thinking about trying neurofeedback as i'm there. I know a clinic in London that have treated many HPPD cases and VS cases with great results so why not. It costs but if it even can reduce my symtoms with 50% it's worth it. I just hope they will be able to target the right area if i do the treatment. 

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How long did that guy remain symptom free ? And what were his symptoms? Vs ? 

Plz update us once u've seen Dr Goadsby. 

I think we would all like to know what this brain hypermetabolism means and how they're planning on treating it. Are few of the neurons dead/permanently damaged which is causing the other neurons to be hyperactive? Or are all the neurons still present but simply over active ?

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