# So what if we all got a Pet Scan?



## Guest (Dec 16, 2005)

Would all of our brains have something in common, compared to the normal brain. Dr atkins approach is pretty cool I think. It is where they scan your brain using breakthrough technology and can tell what type of mental illness you have. The procedure is $3200 and it's over 4 days and they pretty much only have labs in California. Anyone wanna do it with me.


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## Mischa (Aug 23, 2004)

I had had PET scan done , which showed quite interesting results , that were similar to results of Dr. Simeon?s research. Similar areas affected . My doctor even elaborated a research paper on this .
Then they tried magnetic stimulation of areas with lower and higher activity like it is done in case of depression, but it did not help .
Anyway , with these results at least I have some proof of my dP/DR and nobody can accuse me of making things up


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## Guest (Dec 17, 2005)

i'd get it done, does insurance cover it lol?


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## dakotajo (Aug 10, 2004)

Why would I do that? Theres nothing wrong with my dog?


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## [rula] (Jan 16, 2005)

california01soto said:


> Anyone wanna do it with me.


not me  If I suspected maybe a brain tumor, or some kind of life threatening disease I might consider a drastic risky move like a CT, PET or SPECT. but dp/anxiety vs maybe getting cancer from the scan? I don't think so. people do recover form this naturally, and some people get the scans but don't get any better either.


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## Depersonalized (Feb 11, 2005)

Pet Scan is a load of bs. Deperosnalization is an emotional feeling and not any pet shmet cat scan would show it. Its the same as love, fear, happiness etc.... And yeah 3200$.. a good way to make money I guess


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## Homeskooled (Aug 10, 2004)

Rula, your killing me. *You will not get cancer from a scan*. This is an irrational fear. Put it aside. Your body produces hundreds of cancer cells a day, and guess what? Your natural cancer fighting mechanisms destroy them. As you get older, these mechanisms get weaker. Which is why the older you get, the greater your risk is. But *you will not get cancer from a CT scan, a dental x-ray, or a SPECT scan, which is much less radiation. * Here is a link for you

http://www.hps.org/publicinformation/ate/q4762.html

Peace
Homeskooled

PS- I'll add more later


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## Guest (Dec 17, 2005)

Depersonalized said:


> Pet Scan is a load of bs. Deperosnalization is an emotional feeling and not any pet shmet cat scan would show it. Its the same as love, fear, happiness etc.... And yeah 3200$.. a good way to make money I guess


I think i agree with this statement


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## [rula] (Jan 16, 2005)

Homeskooled said:


> Rula, your killing me. *You will not get cancer from a scan*. This is an irrational fear.


 Ok, homeskooled, but you *can* get cancer, and here are just *some* of my sources of information, not just some paranoid "irrational" fear I'm making up.

http://www.healingadd.com/wspect.shtml
http://www.ratical.com/radiation/CNR/NoSafeThresh.html

-ru


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## Depersonalized (Feb 11, 2005)

You get more radiation on a nice hot summer day than from Pet/cat scans...so lets all just stay home then


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## Dreamer (Aug 9, 2004)

Rula,
Modern radiology is far more advanced than even ten years ago. I get a yearly mammogram, I used to get a regular chest X-Ray as a child as that was common to screen for TB in "the old days." I get dental X-Rays and have for years. I have had one CAT Scan years ago with radioative iodine, and have been referred for another ... which I just don't care to go to at the mo. The greater concern is being ALLERGIC to the radioactive iodine (I believe the IODINE) and they can take care of you immediately if that were to happen.

It is not that common at all.

All of these machines use less and less radiation. I'm 47 and full of the techniques used in teh 1960s, 1970s, 1980s. I do not worry about radiology at all ... I figure I glow in the dark.

These days, if you are a young person, that's the least of your worries.


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## Dreamer (Aug 9, 2004)

Listen to Homeskooled as well and his info on the Amen Clinic....

I can't remember but I think it's brainplace.org (sorry Home)

There are so many ways to get cancer. There are so many ways to get ill, and we don't understand the MANY influences. It isn't just ONE thing.

Also, as in MY PERSONAL OPINION, mental illness is a medical/neurological disorder. Our Selves/our psychology/our cognition is part of the very workings of our grey matter. They are not separate entities. They are so entwined you cannot separate them.

And Nature influences Nurture influences Nature influences Nurture.... these arguments go on until the end of time. Some parents these days are concerend about giving their children certain innoculations for childhood diseases for fear of autism. This is a big debate in some circles.

Children die of diseases they could have been innoculated against ...

We educate ourselves as best we can, weigh the risk/benefit, and do the best we can.

D


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## Dreamer (Aug 9, 2004)

NikkiUK said:


> Depersonalized said:
> 
> 
> > Pet Scan is a load of bs. Deperosnalization is an emotional feeling and not any pet shmet cat scan would show it. Its the same as love, fear, happiness etc.... And yeah 3200$.. a good way to make money I guess
> ...


*PET scans have already revealed a difference in DP Brains vs. control brains.*

Why would anyone say a PET Scan is b.s.? What does that mean? They are used for research purposes or if a doctor has a very specific concern about a serious illness in a patient. No insurance company is going to cover that unless it is prescribed for good reason. These are research tools. Other machines, the same.

:roll: 
D


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## Depersonalized (Feb 11, 2005)

Dreamer said:


> NikkiUK said:
> 
> 
> > Depersonalized said:
> ...


pet scan is b.s for diagnosing DP(thats all what I meant)


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## Mischa (Aug 23, 2004)

Some posts are b.s. People should do some homework before coming to discuss things here .

Feeling Unreal: A PET Study of Depersonalization Disorder
Daphne Simeon, M.D., Orna Guralnik, Psy.D., Erin A. Hazlett, Ph.D., Jacqueline Spiegel-Cohen, M.Sc., Eric Hollander, M.D., and Monte S. Buchsbaum, M.D.

http://ajp.psychiatryonline.org/cgi/con ... 57/11/1782

I admire your patience Dreamer . Where do you get it?


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## Dreamer (Aug 9, 2004)

Depersonalized said:


> pet scan is b.s for diagnosing DP(thats all what I meant)


No, see Mischa's post and remember DIANGOSIS is not the same as RESEARCH. Research will help us find better diagnostic tools. No doctor is going to send you for a PET. One day there may be an appropriate diagnostic tool for DP. What it is? That's the Billion Dollar question.

*Mischa*

My patiece? LOL. It's about gone at this point. It makes me feel very frustrated. :roll: Thank you for posting Dr. Simeon's article.

Best,
D


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## [rula] (Jan 16, 2005)

Mischa said:


> Some posts are b.s. People should do some homework before coming to discuss things here .
> 
> Feeling Unreal: A PET Study of Depersonalization Disorder


Just because she used PET scans for some research is not exactly an achievement in itself; did the research yield a cure? no. Is she any closer to finding one now, FIVE years after the PET's were done? not really. Not only have I read every single article ever written by Simeon, I've been her patient. I've also read 3 books by Dr. Amen, and been to his site.

Perhaps my comments are out of frustration, cuz all their research and so called cutting edge technology haven't exactly changed much for most of us. Simeon's latest guess is Naltrexone (which I still tried any how, just in case) and Amen would tell someone with dp symptoms to take Lamictal & an SSRI which for a lot of us didn't do a thing, and ironically Dr. Simeon published research against it. So back to the orginal question, should we all go get scanned cuz it's the answer? personally, I don't think so. -rula


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## [rula] (Jan 16, 2005)

One last thing, to Dreamer.
I'm not opposed to, and am aware of the benefits of using PET/SPECT for research purposes. My objection is to their use *clincally*, as Dr. Amen is doing, for much is still unknown/debated about the long term effects of those scans. This is not my personal opinion, I'm not an expert in the field. This is the opinion of his colleagues. Of course we can all dig up tons of links that debate both sides of the argument, so I won't do that.

Dr. Amen seems to often question why no one else but him is performing brain imaging before prescribing a pill, not for life threatening situations, but for depression and anxiety. Which of course made me dig deeper into an answer other than "Well, he must be a genius, and everyone else is behind the times"...turns out the SPECT machines are relatively cheap, but much is still unknown about their long term side effects. I would love it if it truns out eventually that he really is a genius, afterall he's Lebanese (so am I) and the last great thing to come out of Lebanon was probably Khalil Gibran? :lol: but for now I reserve my right to remain a skeptic.

-ru[/b]


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## Homeskooled (Aug 10, 2004)

Dear Rula, 
While I admire your scientific approach to things, and have for some time, I'm going to have to "take you to task" in regards to your stance on SPECT scans.

The question was, "What if we all got a PET scan?". Yes, what if? What would it hurt, and what would it help? I'm going to repeat something that Dr. Amen wrote and I'm sure you've read in one of your three books. SPECT is not desireable or needed for all clinical psychiatry patients, but is best used for complicated or unclear cases. I think it goes without saying that DP/DR is both complicated and mysterious. I've seen a payoff with four people on this site who have had either SPECT or PET assesments and been medicated from those scans. *They do help to show what the underlying brain areas are which are malfunctioning, and help the doctor assess which medications to use*. Because while all people with DP seem to have temporal and parietal lobe involvement, some have depression or OCD tendencies which can be medicated from seeing, for instance, an overactive cingulate gyrus. But lets say that someone has a genius doctor who figures all of this out from tedious questionaires - would it still do DPers good to go out and get SPECT scans? Yes, it would. How many researchers have done these scans? I think I've seen _two_ papers on this so far. Can you imagine the wealth of data on DPers if 500 got scanned? Or even 75? No matter how you slice it, the individual wins as well as DPers on the whole.



> My objection is to their use clincally, as Dr. Amen is doing, for much is still unknown/debated about the long term effects of those scans.


Sorry Rula, too late. SPECT was used, and is used, clinically, long before the brain researchers got a hold of it. It was the "functional" cousin of CT. A CT could show you the morphological appearance of an organ, but a SPECT, well, it could tell you how it worked. Good for subtle diseases. It was, and is, used to look at heart and liver disease, as well as on occasion kidney function, *clinically*.

While I respect the fact that you found a rebuttal to the ionizing radiation hypothesis (and I respect it to degree - the clincher for me is that people in high radiation areas really do get less cancer), I dont really see the newspaper article as being from an unbiased source. It doesnt sway me one way or another to see a big named scientist question a maverick doctor's work. What's new? Two Australians who said that germs caused ulcers were blacklisted for the last 20 years by the medical profession, only to receive a Nobel prize last year. I tend to beleive that in the medical profession, forward-thinking doctors are almost* always* the last to be respected by their colleagues.

Lastly, your objection seems to be based almost entirely on a fear of cancer, which is why it seems irrational to me. Do you get dental x-rays? Have you tested your home for radon? You've taken antidepressants, but do you know that tricyclic antidepressants _and_ SSRI's carry an increased risk of breast cancer? Does this mean that you shouldnt live in an area with radon? Or go to the dentist's ?Or take an antidepressant? _No._ And what makes it irrational, is that you probably *do* all of the above things, but somehow find the possibility of this risk a reason to discredit the use of SPECT scans. Being that cancer has a largely genetic factor, living in a bubble may not be safe enough to guarantee you a long life. Or, if the ionizing radiation theory _is_ at least partially correct, living in a bubble may increase your chances. Do what you have to in order to take care of yourself, and everything else will fall into place. And to me, this means if you have a chance to get a SPECT or a PET scan for your DP, *DO IT*. If you dont, at least use the knowledge gained by others through this valuable research, and talk to your doctor about trying an anticonvulsant. If you cant find a good one, try one of the Amen clinics nearest you. As I said before, they dont need a SPECT study in order to treat you.

http://www.amenclinic.com

Peace
Homeskooled

PS- And in response to NikkiUK and Depersonalized, you _can_ see both anxiety and emotion on a PET and a SPECT scan of the brain. All those things originate in the brain, and can be seen with the right tools.This is a SPECT of a brain with anxiety - you'll notice the pooled "blood" ( the intense red area in the center of the brain) in the basal ganglia. Its a common finding in people like us.

http://amenclinics.com/bp/atlas/viewlargeimage.php?img=ANX1.jpg


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## Guest_ (Sep 17, 2005)

im just wondering, what purpose would it be if you found out you did have DP? Just so you can say 'see, i paid 3200$ to prove i do have an illness!'

sounds like a waste.


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## [rula] (Jan 16, 2005)

Dear Homeskooled,
Yes, you're absolutely right. the original question was "what if we all got a scan". To that question the real answer is a considerable amount of people (or at least I would guess it was considerable) participated in Dr. Simeon's PET scans in 2000. Was it 75 or more? I don't have the statistics. What I know is that apparently we didn't learn enough from it to come up with a cure. She later did fMRI studies, don't know the figures on that either, but still nothing. Many, many people have paid for expensive scans and are still no better than when they started. Many have gone down the anticonvulsants road, and it led to no where.

As for my _irrational_ fear of cancer, well I don't expect you to know how many x-rays I've had (one) or to remember that on this board I've argued quite often against SSRI's, never taken a tricyclic either, only took Wellbutrin for 7 days. so you see my distrust of the medical field is quite consistent actually :wink:



> I think it goes without saying that DP/DR is both complicated and mysterious


At least 3 people I know who recovered from dp/dr, naturally/meds free, would disagree with you. They say that once you're out you realize how easy it really was to get out, and how they were keeping themselves stuck in the adrenaline-fear-adrenaline cycle. my theory is that dp is nothing more than a habit, a learned behavior that needs breaking, not scanning. but different things help different people get past the fear and break out of their habit, to some it's meds or a scan, to others it's God, and to my friend it was her Reiki practitioner. point is it's whatever you *beleive* in that cures you.

peace,
rula


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## Dreamer (Aug 9, 2004)

rula said:


> Mischa said:
> 
> 
> > Some posts are b.s. People should do some homework before coming to discuss things here .
> ...


Rula,
As noted, brain imaging machines and techniques are truly in their infancy. I don't know enough about the Amen Clinic, Homeskooled does. I have no comment one way or the other of using these machines as diagnostic tools. Since insurance won't pay for it most of the time, one would have to pay out of pocket, so it's not a mandatory thing any doctor is going to push on you.

The frustration over why there is no cure yet ... I feel it myself. I have had DP/DR and my other illnesses for essentially my whole life. I am 47. But that doesn't mean that research isn't leading us somewhere.

But to do studies, research studies, that have any scientific validitity... well this takes time, volunteers willing to undergo tests, also volunteers who have SPECIFIC types of DP/DR. If certain criteria aren't met then the studies are useless. You want as many variables eliminated. You want individuals of the same sex perhaps or an equal number of male/female. It isn't SIMPLE.

Again, what I'm always banging on about. AIDS. It has been in existence in one form or another, in the monkey population, the chimp population, and now the human population -- traced back now to possibly the 1930s, a transfer from chimp to man in Africa where chimps were eaten/are eaten by humans. Research into AIDS began in earnest about 25 years ago. We know how to control the disease so that people can live longer, we know that if individuals use condoms and don't use dirty needles, use untainted blood transfusions, etc. they are unlikely to get the HIV virus and subsequently AIDS.

The virus itself exists in a number of variations and it mutates. There is an even more deadly strain now.

One with AIDS could say, "What the Hell... all that research and people are still dying! Research is useless! Testing people with various meds is useless! Where is the cure, we want it yesterday." Well, you could say this about cancer, about so many illness, common and rare. Medicine is in its infancy. Neurology is like a baby, a newborn. 1990 was "The decade of the brain." Just the beginning.

I say thank GOD there are two major DP research units in the world and much research going into anxiety/anxiety disorders. There is the ISSD -- International Society for the Study of Dissosiative Disorders. (In the LINKS section). And ALL mental illness is being researched and MANY mentally ill people can have DP. Those with schizophrenia, post partum depression, OCD, bipolar. WE AREN'T THE ONLY ONE'S WITH DP.

I just get a tad miffed when I see that OK, there may not be enough money going into research into OUR type of DP/DR. Chronic, our most disabling symptom. But on the other hand, I know one woman from this Board who is doing something about it. Hannah from Andy's Board went into neuroscientific research.

There are a lot of medical professionals I'd like to kick in the head, but dedicated researchers who get far less money than physicians, and are scrambling for research grants and donations.

Well, why in God's name attack them.

If I could I'd go to medical school and join the team.

Best,
D


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## Dreamer (Aug 9, 2004)

Also, it is frustrating for instance that David Kozin from NODID, in alliance with Dr. Simeon, prepared a survey here for non drug induced and drug induced DPers. It was like pulling teeth to get people to fill out the surveys.

Yes, they achieved their goal of 300 people, with great effort and will base further research on those results.

*But I hear people complain endlessly, and then they do not participate in a 30 minute online survey on DP!*!!!!!! :shock:

That is the sort of battle researchers put up with. I am in a University town with a super Neuropsychiatric Hospital. There are requests for research participants daily. Fortunately this is a large university with many young people who sadly have various mental illnesses, and there are also many healthy controls. Some get paid small sums of money.

It is STILL difficult to get these studies together. It's easier to get guys to donate sperm for money!

If you think research is simple, I invite you to set up a research project, using proper scientific method protocols ... on any topic.

I'm sorry I'm crabby, but I honestly don't know what people want around here.

I am as tired of this illness as anyone here. It doesn't matter how long one has had it. One minute is enough to terrify a person. We shouldn't have to deal with this.

*"Cutting edge" today, means nothing. I attended a lecture by a neuroscientist who came out with a book "The Mind Within the Net" -- Manfred Spitzer. It was the most fascinating lecture I've attended. His lecture was in great part about schizophrenia and psychotic episodes.

He said, "What I am showing you here today. What is in my book. It will change by the time I give my next lecture. My book is already out of date. We are moving that quickly, yet there is so much more to learn, and we've only begun."*

Yes, I'm frustrated too.
D


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## Homeskooled (Aug 10, 2004)

Dear Rula, 


> Yes, you're absolutely right. the original question was "what if we all got a scan". To that question the real answer is a considerable amount of people (or at least I would guess it was considerable) participated in Dr. Simeon's PET scans in 2000. Was it 75 or more?


No, it was *eight*. And 24 normals in the control group.



> What I know is that apparently we didn't learn enough from it to come up with a cure.


That would probably be because there were _eight_ participants, no funding, one committed researcher, and I dont know how many thousands of suffering people on this board. And, I think, a frustrating inability to connect the dots with the research done. Do I think that the next step upon doing these PET scans is to try periactin and seromycin on DP? Not exactly. What upon finding abnormalities in the temporal and parietal lobes for the umpteenth time makes you think that seromycin (which was used for a phobia treatment protocol) is the answer? I think its completely random and arbitrary, and just goes to show we need more people in the field, pushing it along. People who are ambitious and empathetic. Doing research is time-consuming, but not this time consuming. DPers just dont have a voice in the mental health field to speed things up.



> Many, many people have paid for expensive scans and are still no better than when they started.


Who? Who have you spoken to from this board that said it was an absolute waste of time? Me? I definitely benefitted from being scanned. Mischa? Nemesis? Arczi? Who?



> I don't expect you to know how many x-rays I've had (one) or to remember that on this board I've argued quite often against SSRI's, never taken a tricyclic either, only took Wellbutrin for 7 days.


I admit, I dont quite have a clear picture on your stance with antidepressants. Wellbutrin was included in the studies done on the carcinogenicity of modern antidepressants, as its just another form of reuptake inhibitors, in this case acting on dopamine and norepinephrine. I dont know whether you participated in the seromycin trial, but that too is used infrequently because of its severe side effects in certain subsets of patients. I recall that you (1) had your amino acid levels tested (2) took 5htp (3) Had given advice about Zoloft, as your doctor encouraged you to take it , and (4) are a firm proponent of adrenal fatigue. My questions were rhetorical - you dont need to test your home for radon, especially if you live in Times Square. My point is that you take risks just living your everday life and doing things you have to for your health. There is a common saying in medicine, that there is a thin line between a medicine and a poison. That goes for herbs, amino acids, and prescription drugs. There was a recent study done that showed how many years of your life were taken off of it by living in New York City. Does that mean that you shouldnt live there? Not if the benefits outweigh the risks.



> point is it's whatever you beleive in that cures you.


I absolutely cannot and do not agree with that assessment. I beleive that the reason so little research is done on DP and the reason so many people ride the seesaw of doubt and rumination which this disease thrives on is because it is seen as somehow "*subjective*". Even the evidence doesnt agree with you on this, Rula. Look at the PET, fMRI, and SPECT scans - they all have objective deficits in common in the same areas of the brain. You can absolutely beat it into submission using the old psychotherapy route - Look, if I'm right, and this has absolutely any relation to subclinical temporal/parietal lobe epilepsy, read up on them - you can raise your seizure threshold through breathing techniques and doing things to calm you. In other words, Rula, you can stop a seizure, or prevent one, by using relaxation and breathing techniques. Age also raises ones seizure thresholds. So I absolutely agree that even if I'm right, you can put it into remission for *years* through age, or distraction, or relaxation, or lowering ones stresses. But I will stress that the reason there is so much *recidivism on this board - in other words, people returning after these remissions* is because they are using the abovesaid techniques, and they are *not enough alone*. The disease is, I believe, both genetic and objective. Even drug-induced DP/DR are in my opinion, latent cases of genetic pathology, wherein drugs are simply the catalyst in exposing the natural tendency. Temporal lobe epilepsy patients are usually taught these things *and given anticonvulsants*. On top of that, they are given *multiple, or adjunct therapies*. You said earlier that many people have gone this anticonvulsant route - *but the protocol which I would like to see used has never been done before on people with DP/DR.* There has never been a clinic that has used primary and adjunct anticonvulsant therapy in conjunction with relaxation, distraction, and breathing technique therapies on DP/DR sufferers. And there never will be, until people with DP/DR,and the doctors who treat them, set aside theories and fears, and resolve to *objectively test, and treat, this disorder*. I'll be back.

Peace
Homeskooled


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## [rula] (Jan 16, 2005)

Dear HS,
I really do admire your passion for this particular topic and for the most part agree with you. It comes with about the same level of enthusiasm that I get from my friend Bronia almost every day about how I MUST go see Igor (her Reiki practioner) cuz once he realigns my chakras everything is going to be just peachy.  Her dp never returned by the way, it's been over 5 years.

I wish I thought things were as a clear cut as you believe. No, I don't think it's a coincidence that two independent research (Amen, and King's college) both concluded that symptoms of dp/dr can respond to anticonvulsants therapy. But then later on, 9 out of 9 subjects given lamictal didn't respond to it at all. My friend on this board who had a SPECT and was given Lamictal didn't respond to it either (she said she'd pop in on this discussion and say hello) But if they were all missing a piece of the puzzle, there's Dreamer (sorry if i'm speaking for you), taking your favorite combo Lamictal+klonopin+SSRI and I'm sure she's an expert by now at relaxation, breathing and distraction techniques. The complete protocol as you would like it...yet, she's not recovered. Any theories?



> Even the evidence doesnt agree with you on this, Rula. Look at the PET, fMRI, and SPECT scans - they all have objective deficits in common in the same areas of the brain.


How is that "evidence" of anything? what proof do you have that the deficit *must* be treated by meds and can't let's say dissappear by sheer will power, psychotherapy (which you already admitted works) or any other "subjective" method? it's a fact that depression/anxiety also show up on scans and can be treated by simply changing the way we think. why not dp/dr? why make it into a much bigger monster than it really is and perpetuate the myth that it's a "disease"?

I don't think it's fair to assume either that most people who recovered with alternate methods are bound to remit. There's just not enough evidence to support that theory. most of the recovered people I know actually did it naturally. Most got dp/dr from benzo withdrawal, and there's been evidence linking convulsions/temporal lobe seizures to benzo withdrawal. So it's very true what you're saying about no one out there connecting the dots. Another ex-dp'er I met recovered by simply practicing Buteyko, a breathing technique mostly used to cure asthma but works for any condition where hyperventilation is a suspect. If I were to go by my Buteyko numbers, I'm chronically hyperventilating, and dp/dr is a symptom of lack of oxygen to the brain. so breathing, yes, I brought that up in a PM to you like a year ago 

As for the choices of seromycin, periactin, or naltrexone, they all made *some* sense, you can't really say they were complete wild guesses. and I did take seomycin, for a week, the theory was that if dp is triggered by fear than a phobia med might hold the answer. but it just gave me bad lock jaw. :roll:

About 9 months ago I went to see my first psychiatrist, armed with information about Lamictal, probably all stuff you posted. but my psych thought it was too drastic, that we should just up my klonopin instead; that didn't help. Eventually about 5 weeks ago he said to me "well I think you might have PTSD" (what a genius! I mean, i did grow up in a combat zone for 16 years), "so, I think maybe we should try a mood stabilizer", "um, you mean like Lamictal doc?" so you see not all your efforts are lost, I _might_ even give the full protocol a try (I'm just not getting my brain scanned still  )...question though, does it HAVE to include an SSRI?

peace,
ru


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## Homeskooled (Aug 10, 2004)

Dear Rula, 
Lets see....where to start. Well, I think that if just get those chakras aligned, you'll be fine..... :roll: . I hope your friend doesnt read that. Anyways...

I dont think you've raised anything new that doesnt fit into the theory. I've been watching these boards for two years now, and its all same old same old.



> But then later on, 9 out of 9 subjects given lamictal didn't respond to it at all.


For instance, this isnt the only bit of research on Lamictal done by Simeon, and you know it. I beleive it was a followup peice to the one that found 60 percent improval in patients in which it was given with an SSRI. Lamictal wouldnt have been recommended unless it actually worked. What you meant was, it hasnt worked for _*all*_ DPers. Which is what I would expect, even given the fact that every single one probably had a temporal and parietal lobe abnormality if scanned.

Yes, lets look at Dreamer. Rula, you've read those Amen books - I know you have. Your smart, and you dont forget what you read. I'm not a big proponent of SSRIs with temporal lobe disorders, and if you've read Amen, you know that he doesnt recommend them either, *until the right anticonvulsant has been found and the scan shows normal perfusion*. Now Dreamer, as SleepingBeauty said on here earlier, you are a "rockstar GOD on here" and I totally agree with almost all of your takes on subjects, and find your DP to be the most like mine, and to be one of the biggest and brightest survivors on the board. That being said, I hope you dont take offense to my using your case as an example, and even where it could be improved upon, at least according to my theory. Theoretically Rula, because Dreamer was taking a tricyclic along with a very heft dose of Celexa, it would be further agitating her already agitated parietal and temporal lobes. Agitating the parietal lobes would further fragment her vision (a problem I also had) and agitating the temporal lobes which further increase rage and an out of body sensation (which I too had). I beleive that Dreamer has discontinued one of them, and may be cutting back on another. The optimal medical treatment would be for her to stop the antidepressants entirely, and work soley with anticonvulsants, finding the combination that worked for her fragmented vision, out of body feeling, and mood swings. This combo may or may not be Lamictal and Klonopin, just as seizure patients will not all respond to Lamictal, or Tegretol, or Trileptal, or even the mother of all anticonvulsants, Dilantin. In some cases, surgery is the only option. This *may*, and let me stress the may, be an option for DPers with proven, full-blown, clinical Temporal Lobe Epilepsy. Again, the siezure center is found through a SPECT scan, and is cut out, hopefully stopping all seizure. Although, in my opinion, you're going to have deficits in memory, or speech, or something related to the lobe, that way making the risk/benefit ratio weighing in on the risk side. But I'm getting off on a tangent here. For almost all DPers, whether TLE or subclinical, an anticonvulsant would be the first step.

Now about the distraction and breathing techniques. I beleive Dreamer *has* found improvement with DBT and CBT. These are, in my opinion, fairly good therapies for adjusting your attitude on life. I havent read of Dreamer regularly using breathing techniques, but I _*have*_ read of another survivor without meds, Janine Baker, saying that a daily combination of both *distraction and breathing techniques*, helped her put her DP to rest. And there is more to this. Even in epilepsy, using these techniques to control seizures is underutilized, and something that I dont know enough about yet. But to simply say that your DP is going to go away with a course of DBT or CBT isnt the answer. A daily techinique to calm the mind when this occurs, that you can carry with you anywhere, is the right approach.

As for people who use natural methods not being bound to remit (A) I didnt say that. But I did say the recidivism is *high* and (B) it would depend on how well the therapy could control your brains screwy firings on a daily basis. And just as in epilepsy, there are a multitude of reasons for remissions. Hormonal changes, age, the X factor - the unknown. Many people are on epilepsy medications, and the rule of thumb is, no seizure activity for 10 years, wean off the medicine.



> As for the choices of seromycin, periactin, or naltrexone, they all made some sense, you can't really say they were complete wild guesses. and I did take seomycin, for a week, the theory was that if dp is triggered by fear than a phobia med might hold the answer. but it just gave me bad lock jaw.


But thats my case in point. It wasnt done scientifically - in other words, it was a "good guess" for what might be the cause, but it wasnt based on previous findings, like good science should be. If she had at least looked at brainscans of people with severe phobias and said "Ah yes! Their parietal and temporal lobes are lit up like Christmas trees! What works for them would work for my patients!" Then yes, I would say that it was a responsible, scientific, well-thought out plan. But all it did was give some good patients some lockjaw *and* DP  There has to be more thoughtful, well-laid out, *strategy*. Then, even if you fail, you learn from it. If more things were done with those brain areas, we'd learn more about why they are misfiring. You usually learn more from failed experiments than successful ones. Instead all we know is that tuberculosis drugs and DP dont mix, which wasnt hard to predict if you look at why the drug is never used.

Next, look at DPers in "remission". They still get unexplained episodes of "feeling funny". They can range from symptoms they've had while going to bed since childhood, where it looks like a clock or a lamp is getting bigger or smaller (called micropsia and macropsis, a common symptom in temporal lobe epilepsy), to people's faces melting or looking uneven or unfamiliar, which is also common with temporal and parietal lobe damage. Things may look fleetingly unreal, and then return to normal. But a great deal of the time, they *dont* return to normal, and the "remission" has ended, returning the person to this board, and beginning another titanic battle against their own brain which may last weeks, years, or decades, until that X factor kicks in, and it goes back into remission. Often, however, luck isnt on their side, and the X factor never appears. Or worse yet, they go to a doctor who treats them *unscanned* and puts them on an SSRI, which according to the Dr. Amens of the world, as well as neuroligists, can lower the seizure threshold, making their hold on reality even more tenuous. Or heaven forbid, Wellbutrin, which causes seizures in normal people. If this isnt looked at objectively, you're condemning people to needless experimentation by God knows how many psychiatrists, and a life lived only in their own head.

Lastly, about your Butkeyo numbers. I'm not really a proponent of that. In other words, it may not have anything to do with your blood's oxygen saturation. Best way to get that checked is with a venous blood gas. I've had that ordered for myself in the past. But really, I'm sure people in acute asthma have all sorts of odd sensations from the brain shutting down. But since its shutting down, they cant think. And the horror of DP is that while you're feeling all of these awful symptoms, you can think with the utmost of clarity. People on here are so guilty of *overthinking*. So I think a lack of oxygen wouldnt explain, for instance, your DP. You're too analytical. And I want to say something else - because there are X-factors with epilepsy, and concordantly, with DP, it is very wise to scan patients, because a co-existing depression, once treated, will also change one's seizure threshold, and change the blood flow in the temporal lobe. Depressive patients also have odd temporal lobe perfusion. The difference on the scan is that a depressive will have a hyperintensive limbic system, while a DP or DR suffer without depression will not. I have seen many women on here respond well to Effexor. If they have the kind of DP I am proposing, it only works for a while, and they return. But a benefit of Effexor in women seems to be that it helps regulate their hormones, sometimes calming down alot that is out of balance in their brains. A good scan can tell you alot about an individual's causes of DP, and about the disease of DP on the whole. More to come in the next installment of "_Homeskooled's DP handbook, Or How I learned to make that DP remission last_...." :lol:

Peace
Homeskooled

PS- I just want to add that my as one of my friends says, my place in life is to "stir the pot" a bit. I dont know why, it just is. I do the same thing on the porphyria website I belong to. Assimilate information, read research, propose cures, and talk to doctors who are on the edge. It causes a bit of a stir. I'm taking that priest friend of mine with brain cancer down to the Cleveland Clinic today for treatment, and his own doctor is against the research I am doing for him (although is family is all for it- its a complicated case). Its just going to be another controversial day for me...I can feel it..... :roll:


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