Saturday, 17 May 2008

Glutamate - the REAL link between Autism, Epilepsy and Psychosis??

Hi.... having fought my way through the last 3 or 4 posts and their 100's of comments my brain needs to cool off a little and so I thought I'd bring things back down with a bump and create a heap of controversy (this blog doesn't have much of that does it, ha ha).

Hypothesis.... "Glutamate is the trigger for stereotypical autistic behaviour, seizures and also schizophrenia."

Some out there may already know this. Let me know if you do. No-one who talks to us about our son has ever accepted any of these links and they treat him for 3 separate conditions. So how have I been brought to this belief?

Well, it is really a combination of years of trying to understand my son's conditions and some fascinating observations of my son in the past 2 weeks. If we are right, or even on the right path, the effect could be shattering for him and maybe many others.

But without ITLAD and this blog I would have continued to miss the critical ingredient which is the power and enormity of the unconscious mind and the Daemon.

History....
We have known for 20 years that the chemical, MSG (Mono-Sodium Glutamate, E621), which is added as a flavouring in many many foods, causes our son to climb walls, babble, change personality, get angry and hyperactive. As a child, such behaviour was partially controlled by removing MSG from his diet. Nobody took us seriously that he had a condition or even that MSG could do this. They effectively patronised us. But we persisted. At 18 years old, after 14 years of trying, we eventually got someone to accept that he may have an Autistic Spectrum Disorder. But again, nobody cared to connect it to anything he ate or any predisposition to chemicals in the brain.

However, we started to read about it and there was a school of thought that Gluten may have a connection. Some reported success by cutting it out of the diet. But no-one could say why this worked, as Gluten was not really linked to brain issues per se, it just tended to be see as an issue to do with digestion and skin issues. And besides... nobody knows how the brain works, do they!? (But that still doesn't stop doctors from cramming drugs into us to help with problems of the head!)

Anyway, at 20, he had 2 big seizures for the first time, a month apart. Medics quickly treated it as epilepsy and gave him anti-seizure drugs. 3 months later, we saw the start of serious psychotic episodes of anger, paranoia, anxiety and hallucinations. Nobody knew what it was or why. No-one accepted any link to the seizures or the drugs. We could not find anyone who would even consider the possibility.

18 months ago, the psychosis was present every day, many times a day and unpredictably severe. It was a terrifying time for the family. For months, we refused to medicate, but we gave in eventually as it was becoming dangerous for him and for us. For 12 months he has been on anti-seizure and anti-psychosis drugs. The seizures seemed to be in control but the psychosis would still rear its head every few days without any obvious trigger. The Psychiatrist was surprised but agreed not to further increase the dose.

NOW HERE IS THE DISCOVERY..........
2 weeks ago, he had his first grand mal for over 2 years (See my earlier post on this). No-one can tell us why this would happen after so long. We just get sympathy and the medics wanting to increase his dose (over my dead body). Last week, he started having daily episodes of 'Mr Hyde' behaviour again. All the old hallucinations coming back and the anger etc.

We looked for what had changed in the last couple of weeks.

Just one thing came to mind.... Weetabix... he had started to eat Weetabix, by the bucket load. That's when it came to me... the old wives' tale that a Gluten free diet sometimes helped Autistic people. But is there a connection?

Well, guess what... Wheat Gluten is the modern source for producing MSG!!

NOW THE HYPOTHESIS....

1. The link to seizures and psychosis.
If some reports are true that, at the times when Glutamate 'floods' the brain, one has vivid hallucinations of one's past life, then perhaps what Glutamate is doing is 'opening the doors' of the unconscious mind and allowing it to leak into the conscious field. For some who are more predisposed, this 'leakage' is probably more of a tidal wave that overwhelms the brain and can, at worst, trigger a major seizure. At the least, it could trigger illusions, visions and voices composed in any combination from the past. It would not be unreasonable to expect such a sufferer to become very frightened, even angry or aggressive and certainly could appear psychotic if still awake! (And a thought on why people get the shakes during a seizure.... perhaps it is because the daemon/unconscious mind finds itself 'in charge' while the eidolon is out for the count... and it is nor very practiced at mundane tasks like managing a human body!)

2. Now the link to Autism
Many of you will have a view that someone with autism has difficulty relating to the 'real world' and will often hide away from it and avoid contact with people. If they are living in their 'right brain', it is no surprise - what goes on in the real world would be far from what goes on in the unconscious mind.

Conclusion

I must research more into the chemicals that could trigger the 'letting in' of the unconscious mind. It may not just be glutamate. Indeed, there is no obvious reason why it has to be the same for everyone. However, I am tempted to believe that the treatment for all 3 conditions may be the same and quite different from the traditional, subjective medications which are accepted by many as really quite hit and miss. The suppression of Dopamine may well be the right treatement for some conditions, but is this deliberate 'flattening of the personality' right for those with Autism? Perhaps all they need is an acceptance that the human mind is made up of 2 minds, one of which is connected to the universe, the other is connected to this human world and when one gets into the other at the wring time, the only possible result can be chaos..

Sorry for keeping you all up late... But I'd be really intersted to hear what yuo all think...is there merit in this? Is it total rubbish? Do you know of anyone who is doing related research?

Cheers
Ed

PS - If controlling the amount of Glutamate in one's head can help manage the overactive 'positive' side of someone's character, then maybe we should recommend daily Weetabix as a cure for people who need a bit more personality in their lives!

7 comments:

Karl L Le Marcs said...

Ed:
The Artist Formerly Known as ED AKA It's Cool To Care:

Hi Ed, certainly happy to help, so below is a fraction of a paper I wrote a few weeks ago on this very subject.

Nice to have you on here again, but you can comments on other people's posts as well, mate.

I say that as few here have met you, and being proud to have been able to have had that pleasure myself on a number of occassions (is it 4 or 5 times now Ed?) I know full well that you could add some astonishing words to existing comments on other blogs, as much as you do in the ale-infused get togethers.

Your Hypothesis that:
"Glutamate is the trigger for stereotypical Austistic behaviour, Seizure and also Schiphrenia"

Is that a quote from YOU or from someone else, as it is a tad debatable.

Glutamatergic synapses play a critical role in all epileptic phenomena. Broadly enhanced activation of post-synaptic glutamate receptors (ionotropic and metabotropic) is proconvulsant.

Antagonists of NMDA (N-methyl-D-aspartic acid) receptors and AMPA (alpha-amino-3-hydroxy-5-methyl-4-isoxazolepropionic acid) receptors are powerful anticonvulsants in many animal models of epilepsy.

A clinical application of pure specific glutamate antagonists has not yet been established. Many different alterations in glutamate receptors or transporters can potentially contribute to epileptogenesis.

Several genetic alterations have been shown to be epileptogenic in animal models but no specific mutation relating to glutamatergic function has yet been linked to a human epilepsy syndrome.

There is clear evidence for altered NMDA receptor function in acquired epilepsy in animal models and in man but a clinical application of pure specific glutamate antagonists has not yet been established in man.

Note that aspartate (found in aspartame) can be converted into glutamate by a simple reaction in the human body. Note also that, many receptors in the body are affected by both aspartame and MSG.

In 1992, the U.S. Air Force magazine Flying Safety warned pilots not to drink aspartame soft drinks due to seizures. In fact many pilots lost their licences to fly after seizures they believe were induced by drinking diet sodas containing aspartame (Nutrasweet).

Perhaps the aspartate acted as a glutamate agonist, or was converted to glutamate which caused the seizure. Either way, there are many pilots out there who would like to know more about this.

BUT Excitotoxicity is the pathological process by which nerve cells are damaged and killed by glutamate and similar substances. This occurs when receptors for the excitatory neurotransmitter glutamate such as the NMDA receptor and AMPA receptor are overactivated.

A glutamate blocking drug has just been approved as of September 25, 2006, in the US for treating "Grand Mal" or primary generalized tonic-clonic (PGTC) seizures. The drug called Lamictal (lamotrigine), made by GlaxoSmithKline, acts by inhibiting the excessive release of free glutamate in the brain.

There is good article here:
Largest Ever Autism Study Indentifies To Genetic Culprits
(from Scientific American)

and here:
Eye Contact Triggers Threat Response In Austistic Children
(also from Scientific American)

Regarding Ed's Gluten-Free Diet idea, I am reminded that there is a report on the Autism Society of America which quotes:

"Current treatments for autism include gluten-free and casein-free diets. A current theory is that incomplete breakdown of gluten and casein result in the formation of casomorphins and gliadorphins, morphine-like compounds which act on the brain. Another theory is based on the fact that 15.5% of all the amino acids in wheat are glutamic acid in its free or active form and 22.9% of the amino acids present are aspartic acid in its free and active form (which can be converted to glutamate in only one step). In fact, wheat gluten is a considerable source of "natural" MSG in the diet. Items containing casein, like cheese, also are high in free glutamic acid. For example - 18.5 % of the amino acids found in cheddar cheese are free (active) glutamic acid.

Parents helping their child adhere to a strict gluten-free, casein (dairy)-free diet may wish to consider also eliminating tomato from their child's diet as well, if glutamate is suspect, since 34.2% of all the amino acids present in a tomato are specifically free, active glutamate.
"

Ed and I both know from ale-infused discussion of our long term battles with the "Specialists" within Mental Health, that the very people who treat your son are the very last people you should ask these questions to: Hell, many of them, wait for this, 'DENY' that the Amygdala processes emotion in the brain an that this is connected to Autism!!

I've heard one say that to me directly and a 2000 word dissertation from me was delivered to his desk, written by me, for him to read before my next appointment.

He has now backed down as I think my assertiveness took him by suprise, and he and I have jointly now written some papers within the Psychology Profession on Patient-Doctor undestanding of treatement in Autism, Bi-Polarity and Schizophrenia.

Last link to another article that might help Ed and Mark:
The role of amygdala glutamate receptors in fear learning, fear-potentiated startle, and extinction.

And finally the Glutamate Flood at death is literally that. It Floods the brain entirely in a RDE, but in an NDE, or alternate Temporal Lobe Seizure, the glutamate flood is much much less severe, a glutamate trickle maybe, and even less so in lowered states of consciouness such as sleep (with some severe examples resulting is Sleep Death).

Hope some of this helps Ed (and Mark)

Ed said...

incredible!
We must talk....
Ed

Karl L Le Marcs said...

Ed: Thank You.
I've been telling you that for weeks mate, and I'm sure it's your round!
*smile*
That's one of the reasons that I hope you could've come to the last ITLADic meeting, but I'm sure we'll be organising another one failry soon!
*why does everyone look at me when something needs organising!*

Seriously YES, Ed, a main prioirity of mine in the coming week or 2 is to get accross to Liverpool to see you.

Take Care!

ra from ca said...

Ed:

I wish you and your son well.
Karl's advice to avoid gluten and casein, and tomatoes is very sound from my knowledge and experience.
Naturopathic doctors here in Canada often recommend that people avoid these foods. I recommend Naturopathic doctors to help find diets that would serve to help your child. Chinese medicine has much to offer in this regard as well.

Karl: You have researched a lot so you may wish to comment on my suggestions.

Karl L Le Marcs said...

Ra from Ca: Ruth, thanks for supporting my advice regarding avoiding Gluten and Casein and Tomatoes.

Now, I DO think that alternative and complementary medicine can play a role within Mental Health treatment yes, BUT it is deeply, deeply misunderstood in the UK and our Doctors and Specialists are far less likely to even talk about them than certainly in Canada.

Chinese Medicine, certainly yes, go to a local Chinese Herbalist (and believe it or not these are in UK shopping centres these days) and get a consultation. I would then advise doing some of your own research (Ed) into what effects it has to offer, always in conjuction with ongoing meds, obviously.

Thank you for requesting my further input Ruth.

Ed said...

Hi,

I don't want to use the blog to talk off the main subject of ITLAD, but I do want to thank each of you for your interest in this post. I will make one more comment 'in blog' and resort to email for any other ones.

Karl, one revelation from your first comment is that Lamotrigine inhibits the excessive release of free glutamate! Our son is now taking Lamotrigine having started with Epilim (Sodium Valproate).

We have told everyone for 20 years of our belief that there is a serious sensitivity to MSG. Our neurologist had acccess to all of our related notes. He still prescribed Epilim and only changed to another drug, after 2 years, on our insistence. Arbitrarily, it seemed, he chose Lamotrigine. He said nothing about Glutamate and remained adamant that Epilim was the best.

We subsequently found that the Epilim tablets are coloured with an AZO dye, and for no reason other than to make them bright!

Our friends in the USA will appreciate this as I believe AZO's are still banned over there (as they were over here until sometime in the 90's).

Ed
(Note... After just 2 days, we are seeing a real improvement.)

Karl L Le Marcs said...

Ed: Yes, I know mate. You and I know full well the internal machinations that are at work within the pharmaceutical industry!
(and don't get me started on Sodium Valproate!!!!)

Lamotrigine does indeed inhibit the excessive release of free glutamate and is a MASSIVELY better drug for Mark to be on than Epilim.
(ooooh the way Mental Health is "treated" in this country really annoys me!!!)

Again Ed, often the last people to talk to about what medicines to prescibe are those to whom we go to for effective treatment.

Effectiveness does not come from corporate money or capitalist greed but comes from care and consideration and UNDERSTANDING!

*gets off high horse, which was also standing on a soap box for extra effect*

Great news re Mark's improvement, Ed. Hope it continues to get better.