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Jay1

Possible qEEG / Neuro Feedback medical trial

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I had a phone call last night with the head of a clinic called www.brainworksneurotherapy.com

 

They specialise in qEEG and neuro feedback to treat various disorders. They have already had some success with cases of hppd, including what sounded like a pretty severe case that had been going on for 4 years (LSD/MDMA induced). He had also treated DMT induced and cannabis induced hppd (interestingly, the qEEG for cannabis induced hppd was significantly different to the serotogenic drugs).

 

They were very interested in our situation (and drug induced disorders in general) and were confident they could help us with a medical trial. I asked what they could provide and what the costs are, so that we can try and raise the funds.

 

There are two ways to do this:

 

The cases he discussed above were individuals treated over 2 weeks in their London based clinic. The cost is prohibitive for us to conduct a 10+ person trail, at £2000 per person. This included 12-20 sessions, with the support of a specialised doctor to process the qEEG and Neuro Feedback.

 

The second option, which he seemed excited about, was that at the start of next year, they are bringing in mobile qEEG units that can be shipped around the globe, plugged into the internet and done remotely. This would work out to around £250 per person and would include a specialised doctor to process the qEEG and Neuro Feedback, write up the results of the trial and provide us with documentation to publish here and take to our doctors/neuros.

 

He said that to get the best results, we need to have 10+ people who are willing to go med/supplement free during the duration of the trial. This is very important, so please consider this if you want to get involved. Other than that caveat, it can be any type of hppd sufferer, mild/severe, long term/new etc ... The device can be posted to most locations, but he suggested that a European test would be quickest, though I don't want to rule anyone out who wants to get involved... With the relatively low pricing, we could possibly even think about 2-3 group trails.. Euro based, USA based etc... Even Cannabis induced / serotonin induced groups.

 

He said that he thought February 2016 was a good target to aim for. What do you reckon? Does anyone have any experience with NeuroFeedback? I think a group qEEG trial is worth the money alone, but if the feedback treatment helps in any way, that is a huge bonus!

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Shit i just sold my neurofeedback device today. Never really tried it for too long.. always too busy or too lazy. And its not worth much if you do it at home and nobody is following your progress and giving you proper directions/montages.

 

The neurofeedback device itself cost 1500euro (maybe even other brand to what I had would be cheaper), so 2000gbp is really overpriced. The psychologist that I talk to about running the hppd foundation in Poland he is a neurofeedback/tDCS specialist. One session of each of them costs around 15 euro in Poland. So we could get 242 neurofeedback/tDCS sessions done here for the same price :D

I actually did around 20-25 neurofeedback sessions in my life with two therapeutists, but it was either not enough or maybe the fact that I was still using alcohol and other things, every few days stopped any possible progress.

Look, I think 2000gbp is way overpriced... and I kind of doubt that 12-20 sessions is enough too...

 

Nonetheless I am very curious to talk to that clinic and ask how exactly did they succeeded in treating HPPD, what montages etc.

 

Knowing that or just knowing that there is a good chance to treat HPPD with neurofeedback we could do the same thing without spending 2000gpb, but instead few of us could come to Poland, where cost of living and medical costs/treatment costs are very low. I am actually planning to take a few weeks/months off starting in January and go to Wroclaw to that psychologist and try tDCS and Neurofeedback. If anybody is interested we could all meet up same time, do all the qEEG, fMRI and everything else necessary and then try tDCS/Neurofeedback. ALSO that psychologists knows a lot of different specialists in Poland/Germany etc.. We could bring our results to few different people and get their opinions. Maybe even try to get involved in our researches somehow (by asking them to join our foundation for example). Its totally different when 10 people with the same problem try to convince a doctor that their problem is real, to just one person..

thoughts??

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The £250 "mobile" option seems like it would be cheaper than loads of people flying to one country. It is worth speaking to your guy though and getting a price for a proper medical trial of 10 patients.

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Wow, this sounds interesting. The second option where they ship the equipment to you is obviously a lot cheaper and more convenient. But I don't really know the details and what would work best. I'm sure actually being in London and doing this face to face with these specialists would also pay dividends as well. I'm doing pretty good in terms of my recovery so I think it'd be best if someone else who has severe HPPD and has had it for a while gets in on this. I'd be willing to help out a bit financially if people needed. I can't contribute much but I figure if everyone gave a little it would really help. 

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Jay I've had a few neurofeed back sessions here in the US so far and it's amazing man. I haven't had a qEEG due to the fact there pretty expensive. The sessions themselves are expensive but worth it man. I'm doing my 5th session tomorrow and I can already tell a huge difference. I always end my sessions where my practitioner places the electrodes over the calming area of my brain and I swear I feel like I took a klonopin when i leave it's awesome. I started the neurofeed back along with nutrient therapy after my Celexa/klonopin combo didn't work out so well. Celexa totally made me worse and I'm trying to get totally off the benzos now. Down to .5mg a night for sleep from 1 mg already. This is amazing stuff and it blew my mind the first session I had. Hell if they will ship a device over here I'll do it. Also I know epigenetics have been brought up on this forum before but I truly believe that this stuff is groundbreaking in the future of recovery. Finding out your methylation status over/under I believe is key when considering meds such as ssri for treatment. My experience with ssri have been horrible however some folks have had success on them. If I had known that I was an overmethylator (high in Seratonin, dopamine, and norepinephrine) I would have never taken an ssri which totally was a setback for me. Now I see a psychiatrist versed in nutrient therapy who has me on a vitamin/diet protocol and I can feel myself slowly coming back. I know I totally went on a rant in this reply but my short answer is neurofeedback is very promising and has been doing wonders for me. Best of luck man.

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Sounds very interesting... I'm pretty sure they ship the unit to USA, so hopefully you can join in.

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Sure thing.... He will be in touch in 2016 with full details about the mobile qEEG/neuro feedback machines... UK, USA and western Europe sounds a definite... Asia possible.

 

So far, only myself and GuyInDubai are onboard (we'll pay our own). I can possibly afford to pay for one more for someone, preferably someone who really doesn't have any means to get the cash together.

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I'd be interested in US. I am attempting discontinuing SSRIs now and it may be a while until I'm completely off. Please keep me in the loop. Would I be in charge of my own neurofeedback sessions? Sort of fuzzy on how that would work.

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Mycall has the ssri worked for you? What did it help with?

On another note: this study is worth w try... By the time January comes you could save up the money for the tests...

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I emailed the guy about the process:

 

"Option 1 - We send you a case with computer, 19ch EEG amplifier and caps. We log onto the computer - we can see you, you can see us, we run the assessment remotely and we gather the data as if we were in the room.

Option 2 - Is the one we spoke about, which is a less expensive way of doing it. We send you the same equipment, but different software. The software leads you though the collection procedure, then it uploads the data to us. While it's not released yet, it is designed to be pretty much foolproof.

 

Neuro feedback can be done remotely as well. We have four units out in the field, and will be expanding further shortly."

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Great.... We seem to be getting close to have a test group that could be properly analysed.

I'll drop them an email

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Hey,

I have been diagnosed with HPPD for over a year now, without using prescription medicine or other drugs.

£250,- for a possible cure is not a big deal. Would sell both my n*ts to get better again haha.

The more expensive option is out of my budget at the moment though due to being a student without work and a low income supplied by my graduation company.

If the cheaper version is still an option, count me in as well!

Cheers

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I've also talked with this clinic. They have had great succés with treating HPPD and VS cases at their clinic. It's expensive but even if they can reduce my symptoms with 50% it's worth it. I'm just hoping they will be able to target the right area. 

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Not enough people showed interest.

If we can get 10 people interested, I will get back in touch with him.

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