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Study Ganaxolone Study

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I agree that the signalling issues of the amygdala are sort of central, but we do not know if they are the cause or merely the manifestation of PTSD. You can give people drugs that depress the signalling which suppresses symptoms - but the PTSD doesn't go away.

Because we cannot follow random infants through their entire life with PET and fMRI, we cannot watch the brain change from inception. We know there is a difference in receptor patterns - but those could be innate to the person. My father almost certainly had PTSD. (I know this in retrospect - he had a horrific childhood, was in Korea in the 'jungle' for two years during the war, and had some very traumatic circumstances - plane crashes - rescues as a fireman in the Airforce, a gun aimed at his abdomen. He had many of the same symptoms I have now.) So it is possible that my amygdala was already screwy, the receptors were already primed.

My father being the broken person he was, married an even more broken, psychotic person who also probably had/has PTSD.

It was like the study in the past looking at the brains of gay men - some said the difference was due to the gay lifestyle while others said it was the brain being different that made them gay. The fact is - we don't really know that much yet about receptors in the brain and how they actually work.

I just started one of the new studies today - it's looking at language differences - neurolinguistics - of people with PTSD versus those who've had trauma but don't have PTSD. Our Broca motor area decreases blood flow when we talk about our trauma, as opposed to when we talk about day-to-day conversation. Neurolinguistics are looking at PTSD from an entirely different viewpoint.

Who knows, maybe they'll be able to create a CBT based on neurolinguistic exercises.

Be well Ikop - but don't sacrifice yourself unless it is really what you want to do.

When I underwent the study where I had the 2.5 hour PET scan - I worried about the safety of certain aspects of the test. The radio-isotope, the art line (people can get CRPS/RSD from them), and the trauma of being tied down in an enclosed space for that length of time. If anyone other than the treatment team had seen how badly my entire body shook and how long I cried afterwards - they'd have locked me up.
 
I just a 2 hours post and forget to save it and it all got deleted by mistake!!!! I am so angry!
Never mind. I will do it more short and coherent this time .

girl3
You are trying to make the dbs procedure more scare and risky than it is in reality ty (sorrry)

Yes! there are risks, like in any surgery, especially brain surgery. However about 40,000 people were operated with dbs for the last 20 years. The risks are getting lower and lower as the assistance technology progressing

And I must say I am very sorry of what happened to your sister in law.

Back to our topic
You said :

"we do not know if they are the cause or merely the manifestation of PTSD"

The most common and successful dbs procedure is dbs for essential tremor (As you know ) - a neurological disorder that we to (like you said in the case of the dbs ) do not know what exactly causes the tremor , but we do know that if we target the movement aria of the thalamus and reduce by that it's activity, in most cases the tremor is reduced up tp a 80 -100% (in people that drugs like deralin or primadone does not help them)

The thalamus and the amygdala are both in the lymbic system and are relatively close to each other and they are both deep in the brain , so I do not see any reason to afraid to target the amygdala if we can target the thalamus , which has many important functions including sensory input, memory ,sleep regulation and much more.

People who had ptsd since childhood are unable, in my opinion, to know how it is to live a normal (or close to normal life).

I did not had ptsd until 3 years ago, and I can say to you for sure, that a week
after trauma my startle response became so exaggerated , that I needed to go with ear plugs for 3 months, because I could not tolerate any sudden noise, my sleep deteriorated from normal 9 hours sleep to a 3, 4 hours at maximum and this is the situation for 3 years, my memory got bad, my attention , visual processing speed became lower,and I started to feel an 24/7 felling of threat even with my family .
So I can say for sure that something in the brain got wrong. Not only psychologically but mainly physically .

The only reason for what happened , in my opinion in a massive excess of cortisol , that risolted in athropy of some brain arias which explain the memory and cognitive problems . (Irreversible or reversible , I don't know yet) and sopusly caused a dysfunction a of the amygdala making it more sensitive to threat. My cortisol levels are still high, and I want to try some cortisol blockers like Mifepristone.

The studies e about cortisol levels in ptsd are controversial, some says it is high, some says normal, and some says low. But usually it is or high or low, bit can produce anxiety.

So I think trying to manipulating cortisol level according to a personal test could eliminatemaybe some anxiety related to ptsd or even improve memory. But one thing is for sure, in ptsd there is a memory, attention and neurological disorders unrelated to dissociative in ptsd, I am talking about real memory problems, very similar to what happens in cushing syndrome - they to have mild to moderate memory and attentional problems .

Interestingly enough, I found 13 trials of dbs for depression, bipolar dipression and ocd, and zero for ptsd. Strange, no ?

One study called europian dipresssion study and the Enrollment 60 people! in many location , here in Israel , France, Austria, Germany ,
http://www.clinicaltrials.gov/ct2/show/NCT01331330?term=depression dbs&rank=9

They will target the Brodmann Area 25 that is found metabolically over-active in their opinion, so they will target it in order to reduce activity and get good results up to a remission .....

So how can it be that depression Mucj more responsive to therapy and has hundreds ( or even thousands) of approved drugs ) and ptsd only 2 : zoloft and paxil both are ssri which apparently unable to treat ptsd, but maybe reducing some background anxiety or depression.... and sometime even worsen ptsd .

And one last thing :
ptsd doest has to be a memory disorder, it might be, but you can have a ptsd without re experiencing factor. And that was the mistake of the pst 30 years, we tried to "resolve the trauma , by cbt or explore, ignoring the simple fact that the reason for the combat veteran to be hypervigilant in a book store is not because it's reminds him his servise but only because his amygdala is over active.

So I do think that the intention to make a dbs to the amygdala in the near futuremich be very effective therapy to the severe cases of ptsd .

The research is done by antonio de selles and others, with the technology of neorosimga

signs of drug addiction
I am not saying that it is the only way to treat ptsd I also thing that Nepicastat might surprise us :

http://www.clinicaltrials.gov/ct2/show/NCT01331330?term=depression dbs&rank=9

ganaxolnoe migh be very good for ptsd .... ( I hope)

http://www.clinicaltrials.gov/ct2/show/NCT01331330?term=depression dbs&rank=9

Abput the familiar here sgb (tried it, did not helped me )
I read alot about it, I do believe that it has some chances to decrease ptsd but the scientific data is not very convincing - and we do not now exactly what it treats, I believe it treats some kind of anxiety related to high amount of adrenaline, but not necessary ptsd .

And about the dbs of the amygdala (suppressing its activity) I do believe it can produce very strong results, and researchers must in this direction , I see in this procedure as the most efficient to target ptsd .
 
We also know that while initially the tremor or the Parkinson's gets better, but that over time in some patients the effect goes away - sometimes very rapidly....because we don't know exactly who it works or exactly how the loss of dopamine can't be faked by a drug or a machine, even though the problem has something to do with dopamine.

The new study I have started is a study that looks at Broca's motor center not working when people with PTSD talk about their trauma(s). Literally, metabolic activity in Broca's area decreases significantly in contrast to non-PTSD people. Neurolinguists are trying to see if they can decipher this in speech.

I don't think for two seconds that if they could make my Broca's area work when I try to talk about my traumas that it will cure my PTSD, nor do I think anyone will ever be able to 'diagnose' PTSD simply by listening to someone speak about pleasantries versus trauma.

Statistics are difficult for most people because they reference themselves in non-statistical ways. For instance, all people younger than 50 in the US are more likely to die from a drug overdose or a car wreck than they are from their anesthetic. But if you ask most people which they are afraid of, they will say anesthesia. So no, I'm not making DBS scarier than it needs to be. I have two patients with DBS who have deteriorated badly in the course of the past two years despite having great responses when they first got their stimulators. Because they have to come back repeatedly for various problems requiring surgery - central IV access, feeding tubes, skin breakdown, etc. - I've gotten to know them and their families. I have another patient who does pretty well with her DBS, but she's not had hers even two years yet.

Ganaxolone will have to finish this phase two trial before they extend use the study or create an entirely different study getting around to dosing. I also harbor hope for it, but will await the results since no one knows for certain yet if it helps. Producing 'an effect' is not the same as making someone better.

Again - if you want to participate in a trial of DBS for PTSD, then by all means enroll. I'm not going to because I think the science isn't really there yet. It is still too much of an analogue solution to a micromolecular problem.
 
This dbs trial did not started yet and even when it will, it is unlikely that I will be able to take part because they will enrol only US army veterans...

You said that you did feel some affects while on ganaxolone, was it similar to the effects of benzodiazapines ?
 
Sleepy mostly. Since I don't like the way benzos make me feel, I don't take them unless I'm having a horrific panic attack, don't have to work, don't have to drive. I'm too sensitive to many medicines - when I was on Cymbalta I could only take 20mg a day because it jacked my blood pressure up too much. When I was on Prozac I could only take 20mg a day because otherwise it made me feel one dimensional.

Hopefully when they do extended-use-studies they'll include a low dose for people like me who get zonked too readily. I want to feel calm and focused, not asleep.
 
I just e-mailed them to see if I could enter the trials. I'm in California, hoping I dont have to fly out to Boston or Cincinnati since those are the only locations allowing civilians. Does anyone know if this drug alters hormones like benzos do? It seems to be much more effective then benzos, especially since it doesnt appear to have tolerance or addiction.
 
Girl 3. Do you know if they will work with people remotely OR do we have to be present? So far I have not heard back; how did you go about getting involved in the trials?
 
I would like to take a part as well , but i liVe in Israel so the chance for that are low ... But if they will agree tha will be so cool :)
 
Please ask. I will appreciate it. You can ask if it could be done with a collaboration a local Israeli doctor, for example. I really want to try it.

ikop
 
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