The Idea of Kindling, and the possibility of Deep Brain Stimulation

[[be...]]

I’m trying to follow this thread but I’m sooo confused 😐

[[ra...]]

Benzogirl,

 

First, don't be too impressed with the MIT.  I often joke that I am probably the dumbest guy to ever graduate.  I have met many real geniuses, and I am not them, but it honed my problem solving skills and my work ethic.  That said, I am still disabled, and plagued by many physical and psychological challenges.

 

Don't be concerned about being confused.  It is confusing as hell. 

I can clear up a few things easily:

PoNS, Transcranial Magnetic Stimulation (TMS) and Transcranial Direct Current Stimulation (TDCS) are therapies one could get today depending on what country you live and how much money you are willing to spend.  Different researchers make claims, and they may be valid, but even the ones who are teh respective strong proponents of these electrical brain therapies will admit they are very blunt instruments.

 

Then along comes a team in Iran that uses a very precise electrical therapy to reverse epilepsy in rats using Deep Brain Low Frequency Stimulation (LFS).  They applied it to the deep brain, because that is from where epilepsy comes, but the parameters they measured and improved are the EXACT parameters I believe are the source of all of our pain: too many glutamate receptors that open too easily and let too much current through.  If it could be applied to different nerves, say a stiff spine, or the celiac branch of the vagus nerve responsible for IBS, maybe it could help.

 

I did my very best to summarize that paper, pointing out what was important and also what did not make sense.

 

Unfortunately, I have tried to reach out to two of the authors in hopes of establishing a dialogue, but sadly, they have not returned my emails.

 

I will prod again when I am feeling a little better.

 

ramcon1

[[be...]]

Is this an effort on your part to find a cure for withdrawal?

[[...]]

Is this an effort on your part to find a cure for withdrawal?

 

Precisely.

 

Nov 3 have you recovered from your workout induced setback?

 

I'm trying to workout and stabilize and I notice I really have to watch the intensity of the exercises.

 

I have not. I am about 5 months out from it and (minus the first few weeks of acute years ago) I am worse than I've ever been. Definitely tread lightly on the workouts. I honestly thought I was coming to the end of my withdrawal run and was trying to push myself over the hump, but it did the complete opposite.

[[va...]]

Nov 3, I feel you will get well. It sounds naive I know but I really do. Walks in nature can help us healing to a point. I go in the forest as often as I can.

 

Benzo girl I'm lost too but I'm so interested and I'll follow because this is hope for the future. On Tuesday I have my monthly psychiatrist appointment. I'm translating and printing some of Rancoms posts and showing him. He was so against BBs at first, but after me printing a few posts he's really interested and he keeps them eagerly. I'm going to put them back in my purse and he says "give me give me" 

 

Rancom, you keep doing your research please. There is hope. And we like to read a brainy guy's theories. It's very sexy 

[[be...]]

:thumbsup:

[[Gu...]]

My pdoc offer Transcranial Magnetic Stimulation or TMS for those suffering depression not treatable by anti depressants.  This might work but it scares me.  It just reminds me of the electric shock stimulation of the 60s that lobotocized Jack Nicholson in One Flew Over the Cuckoos Nest.  Maybe it works better now!

[[va...]]

GP I will definitely not be the first to try this and I think you're very smart to stay away from experiments.

[[Gu...]]

Well that’s my first thought Val, then I read Ramcons  post and I have to wonder.

[[va...]]

Well that’s my first thought Val, then I read Ramcons  post and I have to wonder.

 

I'm willing to do it too but only after 200 volunteers have bravely tried it before me. I'm no hero.

[[...]]

Nov 3, I feel you will get well. It sounds naive I know but I really do. Walks in nature can help us healing to a point. I go in the forest as often as I can.

 

I just wonder... Without an interventional fix that actually heals the damage that's been done, do we actually really 'heal'? Or do we just come back to baseline until the next thing sets us back and re-awakens those damaged, sensitized receptors? Do we have to live tip-toeing through every situation for the rest of our lives? I'd love to heal this at the root, ya know? Reverse the damage at the receptor level so I no longer have to live in fear and anticipation of the re-emergence of terrible symptoms and such terrifying, long-lasting setbacks.

 

I love nature walks too though.

That's why winter sucks. 

[[va...]]

Nov 3, no idea if you will heal completely and definitely and forget about this whole situation. Let's hope Baylissa is right but it's true we don't know.

[[ra...]]

Dear Nov, Vallium and All,

 

Here is my own personal take, based only on thw general idea of everything I have read and what "my gut" is telling me.

 

Baylissa and the time heals all camp are almost right.  Literally 99.9% of all people will heal in time.  There is a debate as to whether "most" people heal in a year or 2, or "most" people heal in 5-8, but that is not really the point, and I really do not want to spend time talking about it because at least to me, it does not matter.

 

What I think is that after a period of time off of anything that regularly modulates glutamate, and to me the big 4 are benzos (and definitely Z-drugs, maybe gabapenioids like Neurontin and Lyrica) alcohol, tobacco, and beta lactam antibiotics, your body experiences a "normal" exposure to glutamate.  After this period of "normal" exposure, your dysfunctional glutamate reception returns to normal.

 

Vallium,

 

¡No me halagues así! Me avergüenzas. Es una broma. Me encanta sentirme halagado y no me puedo avergonzar. ¡No sabía que eras español! Mi padre fue criado en Ecuador. Ok, de vuelta al inglés.

 

All,

 

Remember, I am not a doctor, I am not prescribing anything, etc.  Actually, this time I am prescribing something with which the mods will be fine "caution."  Please think long and hard before you let anyone hook you up to any kind of electro magnetic brain device.  TDCS, TMS, PoNS and eth like are VERY blunt instruments.  I am not saying that it is impossible they could help people.  I am saying I personally will not choose them, and if you do, be prepared that literally anything could happen.

 

Now I have some good news and some just news.

 

First the good news:  the principal author of the Deep Brain LFS paper just replied that he is open to email discussion.  We will get our questions answered.

 

Now the news, and I am going to copy this in a separate post:  I need your patience.  It will take weeks of correspondence to get the answers from this one man on this one paper alone.  I will come back when I have something useful, I promise.  But also, guys and gals, I have literally thousands of pages of reading to do to catch up to where I need to be to march us to the next step.  If you know the cliché saying, “the more I learn the less I know,” it is very true, and if I am going to get us where we need to be and work with the best MD/PhD’s in the world I cannot show any “weakness.”  I need time, which means I am not going to spend it here.

 

You are my buddies.  If you need me, if you need and answer to a question, if there is something here you think I have just GOT to see, send me a PM and I will answer, but I am going to take literally a couple on MONTHS, to get where I need to be if we are ever going to get out of this.  Or more accurately, if we are going to turn Baylissa’s 7 years into 1-2.

 

Ramcon1

 

[[ra...]]

Y valiumnomore,

 

Yo sé que eres mujer.  Fue un error de escribir de maquina que escribí, "español" en vez de "española."

 

Espero que puedas perdonarme,

 

Ramcon1

[[va...]]

 

It's so exciting that this doctor is willing to have correspondence with you about our problems and a possible improvement. It's a dream, but so were many medical advances in the past and things were invented. I'm still on the Valium and very very unstable so I won't be able to taper in who knows how long. I hope I stabilize enough to taper again. Don't bother about answering us, as it's much more useful to inform the medical community of what we're going through. This is much needed. The Lisa Ling special didn't put the emphasis on the need to slowly taper over months or years, so the whole thing was very dangerous IMO. I hope people aren't being cold turkeyed thanks to that documentary.

[[ra...]]

Valiumnomore,

 

I hope my Spanish is pretty good.  I have been speaking it for 40 years, which is why I was embarrassed when I addressed you as a man, ironically while telling you that I cannot be embarrassed.    I think I was called out once for Spanish in a longer post, but since I wrote one sentence directed specifically to you, and now redevan, a fellow Spanish speaker, is a moderator I think we are good.

 

All,

 

My ducks are in a row.  I will report back on this topic as things develop.

 

Be well my buddies,

 

ramcon1

[[Po...]]

Anyone have any updates?

 

Thank you.

 

Hope everyone is improving.

 

 

[[...]]

Ramcon and I were just discussing this yesterday.

 

As of yesterday, I was still pushing forward on the idea of DBS and low frequency stimulation with great excitement.

 

While I'm still very intrigued by the concept, namely because of the paper that mentioned normalizing kindling in the GABA and glutamate systems specifically, I have stumbled on some things today that have maybe evoked some slight hesitation.

 

I found a couple paper that talk about the time sensitivity of low frequency stimulation treatment in addressing kindling in other receptors (the amygdaloid in these cases).

 

https://pubmed.ncbi.nlm.nih.gov/18499467/

 

'In kindling animals, LFS delivered immediately after cessation of the kindling stimulus inhibited the seizure stage during kindling acquisition, whereas LFS delivered after the cessation of afterdischarge accelerated the kindling progression to stages 1 and 2. (ii) In fully kindled animals, when using the generalized seizure threshold current as the kindling stimulus, immediate LFS decreased the incidence of generalized seizures and the average seizure stage as well as shortened the cumulative generalized seizure duration (GSD). However, delayed LFS prolonged the cumulative GSD and afterdischarge duration. Our study indicates that there is a time-dependent aspect of LFS treatment, and immediate LFS has anti-epileptogenic action.'

 

https://pubmed.ncbi.nlm.nih.gov/20662893/

 

The first study and quote would indicate that for kindling in the amygdaloid, the low frequency stimulation needs to be done immediately after the kindling stimulus to be effective. Furthermore, if too much time passes after the kindling stimulus, the LFS actually makes the kindling worse.

 

The paper on deep brain stimulation (using LFS)  restoring the glutamatergic and GABAergic synaptic transmission and plasticity to normal levels in kindled rats is still one of the most exciting things I've seen. But I don't believe it details WHEN the LFS was applied in relation to the kindling. Was it immediately after? Had time passed? Etc... Maybe we could reach the authors to find out. I would be incredibly interested to know if LFS could resore the aforementioned glutamatergic and GABAergic synaptic transmission and plasticity after the kindling has already been set in motion for some time... I wish we could set up our own studies on this, ahhhh. Could be so insightful and potentially helpful. But I think this detail needs to be explored before this could be implemented or attempted in anyway.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6837391/

 

That said, I've found a PEMF device that emits electromagnetic waves at customizable frequencies, and it could definitely be set to 1 hz for certain time lengths like the paper, though likely couldn't mimic the pulse duration and such. But I've seen 1 hz frequencies used in various healing/calming  modalities. So maybe that would be sufficient.

 

If we could get ahold of the authors of the DBS GABA/glutmate paper and determine if they tested their results AFTER a certain time window, then it would be cool to try low frequency stimulation on an area of our bodies/nervous system that was damaged by benzos, but maybe isn't as sensitive as the brain. For example, Ramcon has a lot of stomach issues and mentioned applying the LFS to the iliac/intestinal branch of his vagus nerve. I have terrible lower abdominal/pelvic nerve pain and would love to try to apply LFS there and see if it'd heal those nerves.

 

https://earthpulse.net/pemf-therapy-device-v6basic/

 

The device I mentioned is affordable. But I admittedly don't know enough about these frequency admitting devices to say if it'd be sufficient/effective for what we'd like to test. It's certainly not as precise as DBS... Or Elon Musk's Neuralink. ...But it can emit 1 hz frequencies.

 

We need to look into the time window though, as we don't want to make ourselves worse.

Anyone in University and want to run a little experiment?! Lolol... wishful thinking but man I wish we had a connect on the inside like this.  :'(

 

 

 

 

[[Po...]]

Nov - thanks so much. 

 

I’m struggling badly. Hard to read or think or write.

 

Looking forward to small improvements so I can join you in this and being proactive.

 

Appreciate you!

 

 

Alex

 

 

[[ra...]]

Just FYI

 

I saw something on the news a few days ago about DBS for addiction via surgical implant of a DBS brain stimulation device.  Even though 99% of us are not true addicts, the damage is similar enough.  Also, they mention DBS used in different areas of the brain for Parkinson's and epilepsy.  It has a great deal of promise.

 

The main issue I have with it for us is the difficulty of applying it systemically (everywhere) as most of us have systemic damage.  That is the only reason I was keen on NAD+.  It helped some, and it goes everywhere.  But as I found out it is definitely a problem if one has histamine issues, and as Nov found out, it might hurt some independent of histamine issues. I have no idea why at this time, and like Power, I do not have the ability to dig deeper right now.

 

Taking nothing away from DBS, I am cautiously optimistic about Xenon, as brought up in the Jordan Peterson thread, and intend to put my brain on that first, as soon as I have a brain again.

 

Ramcon1

[[Co...]]

Any updates on this? There's a research group where I live working on and offering neuromodulation for all kinds of things (TMS, TES, neurofeedback). They claim to indeed also help addiction and insomnia, alongside tinnitus, burnout etc. So just wondering about your thoughts.