7 replies to this topic

[bacopa]

I may have some form of toxic/traumatic encephalopothy, some form meaning some degree sorry.

I have read that in some cases it prolongs and does not always lead to early death, and maybe some can live long lives, either way, I'm in the "I don't think I will live a long life" category.

Having said that, I'm better now, and for those who have followed my sad story, i'm now sleeping better, I've controlled the "brain damage induced headaches" as well as sleep deprivation led to them I KNOW, and I'm working on getting strong enough immunity wise for amalgam removal.

I'm taking a pretty strong regimen, of noots, supplements, that I can just copy paste for you guys, most are for amalgam illness, of mercury toxic people.

The first priority is to prevent further brain atrophy, I now firmly believe this and the hg/mercury are the root cause of my chronic sleep deprivation.

So I'm going to repost this in my other thread, as well, to get all the help...I know of a few staples for brain atrophy b12, astralagas, and the rest of the noots most take, ALCAR, serine, choline, etc.

For sleep what seems to work is cold temperatures, calm enviornment, and for now depakote and sadly clonopin relax me, + L theanine...L tyrosine, or is it L tryptophan, this is the kind of memory problem I struggle with acutely now...one of those guys sometimes helps me with pleasant dreams, that is when I CAN sleep. So we are talking going 5 nights no sleep, quite often, yea...this is why I KNOW mercury does this..(I studied it, and heard many others go the same distance with sleep deprivation, without all the brain insults I also sadly have.) And brain atrophy I really think makes it tough, if you don't have enough brain TO sleep, how can you? is my theory...and some others agree.

So I need to 1) reverse the atrophy, if possible, and I do better considerably on some days, when I work hard at it, 2) prevent the migraines, which depakote does wonderuslly, and 3) get strong enough to get the amalgams which are coated with mercury, simultaneously trying to control my anger, rage at the quacks who messed me up. I know brain damage, and dementia can also cause chronic sleep problems, so it's that complex...the solutions though may be simple, supplements, ice packs, hyperbaric oxygen, many claim it heals brain injury and dementias, and migraines...some of which I know from first hand anecdotal accounts, not hbot doctor claims...

But mercury is contraindicated, with hyperbarics, potentially...so I am consulting with the 2 foremost mercury experts, Andy Cutler, and Dr. Boyd Haley, to see whta they would say about high levels of hg in brain tissues, and low pressure oxygen which is what form of hyperbaric they give to brain damaged people.

thanks!

Devon

[Destiny's Equation]

How soon will you be able to get the fillings out? I imagine you will feel MUCH better after the chelation.

[bacopa]

From now on when I write a really long post I am going to re-edit it in a document before just submitting it, as sometimes my posts are scrammbled, and obviously I’m in an acute state of either serious brain damage, or some kind of rare neurodegenerative condition, either toxic encephalopothy, or traumatic, or both, the problem is there is only one place studying the traumatic kind as in where you can have an open dialogue, no neuro knows a thing about either, as this head woman told me at BU center for truamatic encephalopothy...and toxic I know of one person who I believe does have it, sadly what can one do?

I’m scheduled to see this doc Joe Carrington who had some sketchy ideas on brain atrophy and vitually denied it exists in psychosis, and seemed to define it as near to brain death...or in short he seemed to skirt around the issue as we were emailng back and forth, and he seemed more like he has a deluded christian savior thing going than a real doctor. I know he has all the experience, but working with dementia patients he probably just thinks if Ido have it there is no hope, and wants to believe I don’t etc. ok but

>he claims he can do blood tests that can help me with brain chemistry, red flag there, and in short I have an air like feeling foudn in carbon monoxide poisoined people. so I am thinking I either am extrmemly toxicly damaged, and traumatically, which one is heh, more of a causal problem in terms of life span, I’m starting to think the toxic one, as I don’t sleep anymore.


> I have a watered down brain, sometimes it feels like air, but it always feels like I'm using a small part of my brain..THIS is a huge thing neurologists never address...what subjective brain states are really...when you can only feel a part of your brain, what is exaclty going on...sometimes I have less of that hyoxic feel, sometimes my brain feels like lead, all are potential signs according to one person of encephalopothy, but that may not or may be sound advice...I do resepct this person a lot, and I know this person knows a lot about what most neruos know nothing about...this is the crux...
>
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>
> so chronic traumatic or toxic encephalopothies are dementias....not that I have this, but I easily could one day. based on reading the symptoms, talking with one survivor who claims she has it, but no neuro is trained if I don’t have this I still have this “hypoxic” feel in my head which is bad bad news, as it has not gotten better, but worse...how one repairs THIS, I don’t know, maybe if the amalgams were removed it could go away, but I have to get to that point, but to be honest I tend to seriously doubt it...Im going to save this conversation for Andy, Cutler the amlagam illness doctor, who I’m consulting with.. this is like learning along the way with a damaged brain...
>
This doc said he would give me a Pet scan, but before he wanted me to watch a show and chit chat with him, when I said I'm sorry I'm here for one reason, to figure out what I'm up against, in short, he just said, I don't do that over email when he was obviously telling me all kinds of theories and ways to repair my brain. So he is on board of a top anit aging org, whatever that means, and calls himself now an anti aging doctor, but he’s old, and been at it for 43 years! So he may know some things, but most I would think I coudl just get good blood tests, that may show deficiencies or maybe he is good at figuring out if I’m over supplementing...I have no idea.





> to sum up, I need a brain scan and tests to rule out dementia...then if I can, then I need to trust that they are right, because no neuro is schooled in the one I worry I might have,

> So the goal is not to be "demented" and then get strong enough to get the amalgams out, phew....and then then I would have to repair the damage, and hyperbarics is the only thing I have read about after exhaustively reading that can do this. And many swear it did repair their brain, sound of mind people, who did not sound completely DELUDED. I worry that much more about the air feeling, this to me suggests something that even hyperbarics may not be able to undo...the WORST fear is toxic encephalopothy, I am now realizing, as there is no center that is currently aggressivley studying it...hence my freind who figured it out from reading case studies, and info online, on wikipedia, articles, so in short what I may have could be the wort thing to have, and even then there IS no way to repair the brain besides suppelments, hyperbarics, exericise, sleep, and time.

there is hope that this air like feeling will go away if I can sleep...but my hope is diminishing...
>
> welcome to my hellish life.
>

Edited by bacopa, 09 February 2012 - 12:22 AM.

[bacopa]

How soon will you be able to get the fillings out? I imagine you will feel MUCH better after the chelation.

I'm not sure Destiny if I can get strong enough to get them out, that is the goal! So as of now I have this watered down, airy feeling in my brain.

We talked about this once or twice....obviously to me this sounds like a toxic induced thing, or hypoxia, either way it's bad news.

The other "brain feelings" I do get are kind of like my head is concrete, you said you had a similar feeling.

So if it is a toxic induced true encephalopothy, which I'm realizing there is no center for study for this!

there is one in Boston, BU center or trauamtic encephalopothy, and I have had head trauma to, so it is interesting because toxins induce a very different type of brain damage, however I can't be sure, in this state.

I'm worse today than yesterday and I'm on no sleep again...but I was better this morning...anyway...I can see how a gas like carbon monoxide can create an airy hypoxia like feeling, and I've read on a CO forum that people can get this feeling. how one would fix that is a mystery to me...

it may boil down to simply that...somehow just supplements, over time, getting sleep...but the idea seems for me that if you have an airy like brain that's just it, there may not be many brain tissue left hence why people like me might not be able to sleep...I hope that isn't true, but there are no controled studies, and if their are, very few, and I'm in no condition to research them.

in short, how do you repair a brian in this condition? see above post I mentioned that the researcher I spoke with at BU center, told me in this dementia, there is the chronic kind and the non...I am wondering, and asked her, if the non chronic is a less aggressive dementia, and can you live a full life, kind of thing...tell me if you understand.

[Destiny's Equation]

I know I already suggested this on Skype, but...cold temps, cold temps, COLD TEMPS!!!

Back when I had toxic encephalopathy regularly cranking my thermostat down to 50 degrees Fahrenheit kept my brain alive. And don't worry about what your dad thinks, since when is "common sense tells me this is bad" a valid scientific argument?! If one has a piece of very expensive meat should one put it in the refrigerator or leave it out to rot? (A brain is more valuable and precious than any piece of meat.)

Also please post your regimen (may I suggest astragalus if you are not already taking it).

[niner]

Devon, the most likely thing that is going on with you is an exacerbation of the condition you've been dealing with for years. Have you changed any medications recently? If not, have you seen your psychiatrist lately? I really don't think you have toxic encephalopathy, holes in your brain, or mercury poisoning. I can tell you aren't yourself, though. If you haven't talked to your psychiatrist about it, you should. Who did the ECT, and what do they have to say about your present condition? How were you feeling before the ECT?

[Destiny's Equation]

I really don't think you have toxic encephalopathy

Why do you assume that? (I am genuinely curious.)

Brain damage can mimic psych disorders. I've had idiot psychiatrists misdiagnose my encephalitis as psychosis, and I know of 2 people with traumatic brain injuries who were misdiagnosed and sent to the psych ward instead of the ER...where they died.

[niner]

I really don't think you have toxic encephalopathy

Why do you assume that? (I am genuinely curious.)

Brain damage can mimic psych disorders. I've had idiot psychiatrists misdiagnose my encephalitis as psychosis, and I know of 2 people with traumatic brain injuries who were misdiagnosed and sent to the psych ward instead of the ER...where they died.

Mostly because of two things: First, toxic encephalopathy is rare and would require a significant dose of neurotoxin, which I doubt Devon has had. Second, Devon has discussed his psych condition here on numerous occasions; an exacerbation of that is just a far far more likely explanation. The ECT is a confounder though; if this is a consequence of it, then that's yet another thing. I'd just hate to see him waste time chasing a bogus diagnosis, and I would really hate to see him blow a fortune on removing amalgam fillings.

How was your encephalitis diagnosed? Do you know what caused it? I'm sorry to hear about the two people with TBI. How were they injured?