Jump to content
SurvivingAntidepressants.org is temporarily closed to new registrations until 1 April ×

Brain scans - fMRI, QEEG, PET, or SPECT - for psychiatric problems


Altostrata

Recommended Posts

  • Administrator

See also:

 

should-i-be-worried-about-having-an-mri-scan-done-with-contrast

 

 

More likely they show researchers whatever they expect to see....

 

Brain Scan Overload

Don't be fooled by pictures of the mind in action

 

By JONAH LEHRER The Wall Street Journal NOVEMBER 12, 2011

 

In November 1991, a team of researchers at Massachusetts General Hospital described a radical new method for visualizing activity within the human brain. By using giant, superconducting magnets, the scientists were able to peer inside the skull, constructing precise maps of the mind at work....

 

This experimental technique is known as functional magnetic resonance imaging, or fMRI. Over the last two decades, the technology has become one of the most popular tools of modern neuroscience, generating an average of eight peer-reviewed papers every day.

 

These studies have spanned a stunning range of topics, attempting to locate everything from the neural differences between liberals and conservatives to the bits of cortex that become active when we look at beautiful works of art. The brain-scan image—a silhouette of the skull, highlighted with bright splotches of primary color—has even become a staple of popular culture, a symbol of how scientific advances are changing the way we think about ourselves. The expensive machine is like a high-tech window into the soul.

 

But is it really? While there is little doubt that scientists have learned a tremendous amount from fMRI, it's important to realize that the tool comes with strict limitations, which are often misunderstood. Many of these limitations are rooted in the fact that the scanners are forced to measure brain activity indirectly: Neurons speak in squirts of neurotransmitters and bursts of electricity, but fMRI machines can track only changes in blood flow.

 

In theory, this discrepancy shouldn't be a big obstacle, as numerous studies have found that blood flow is a useful approximation for what's actually happening in the brain.

 

The problems begin, however, when researchers attempt to take complex psychological phenomena, such as the experience of love, and reduce them to particular blobs of cortex. They do this by leaning heavily on complex statistical algorithms that allow them to sort the "noise" from the "signal."

 

The noise is all those changes in blood flow deemed irrelevant; it's also the vast majority of what's taking place. The end result is that, in many instances, the statistical filter misrepresents our neural reality, focusing on peaks of activity instead of on all the interactions that make those peaks possible. The brain isn't simple; our pictures of the brain shouldn't be, either.

 

Consider an op-ed piece recently published in the New York Times, which used fMRI results to demonstrate, purportedly, that people "literally love their iPhones." The evidence? When the researchers showed subjects a video of a ringing cellphone, a part of the brain called the insula exhibited a spike in activity. Because previous studies have linked the insula with feelings of love, the authors concluded that the gadget had become a "romantic rival" for husbands and wives.

 

But here's the problem: The insula is also activated by feelings of disgust and bodily pain. It plays an important role in coordinating hand movement, maintaining balance and monitoring bodily changes. In fact, activity in the insula has been implicated in nearly a third of all fMRI papers. Because the brain is such a vast knot of connections, it's often impossible to understand what's happening based on local patterns of activity. Perhaps we're disgusted by our iPhones, or maybe the insula is just preparing the fingers to move. The pretty picture can't reveal the answer.

 

What's worse, the very fact that we're looking at a brain scan seems to inhibit our critical thinking. Deena Skolnick Weisberg, a psychologist at Temple University, has demonstrated that merely referencing fMRI research can bias the evaluation of scientific papers.

 

When she gave neuroscience students and ordinary adults a few examples of obviously flawed scientific explanations, people were consistently able to find the flaws. However, when these same explanations were prefaced with the phrase "Brain scans indicate," both the students and adults became much less critical.

 

When used properly, fMRI can be an essential scientific tool. The scanners have taught us a tremendous amount about how those three pounds of brain give rise to the infinite mind. But every scientific technique has drawbacks and constraints. Until we realize that fMRI is not a window into the soul, that the images it produces are fuzzy statistical representations of a very complex organ, then we'll be continue to be misled by the research.

 

In the meantime, fMRI has still taught us something interesting: The human brain loves looking at pictures of itself.

 

http://online.wsj.com/article/SB10001424052970204554204577024253508340744.html

 

 

Edited by ChessieCat
added link at top of post

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to comment
Share on other sites

I've been strongly considering getting some type of scan to see what effects these drugs have had on my severely impaired/damaged brain, but had been wondering if I should try push for SPECT scan or fMRI. Since we have free healthcare where I'm from, I can possibly get it for free if I can convince my doctor about it (he knows my story and situation). While I realize that the results can't actually be used as a diagnosis, I'm still really curious if there is actually changes in activity to my frontal lobes (it feels like it).

 

Does anyone know which of these scans would suit better for this type of impairment?

Suffered a severe adverse reaction to the tricyclic drug Nortriptyline in October 2008, which completely wrecked my brain and my nervous system. I am currently in my 38th month of recovery, with many symptoms still present, and with no improvement in quality of life, which is still nonexistant. The damage is so severe, that I fear I've been permanently disabled. I struggle to get outside as often as I can (still only for short periods of time), but I am still very much a vegetable mentally.

Link to comment
Share on other sites

I've been strongly considering getting some type of scan to see what effects these drugs have had on my severely impaired/damaged brain, but had been wondering if I should try push for SPECT scan or fMRI. Since we have free healthcare where I'm from, I can possibly get it for free if I can convince my doctor about it (he knows my story and situation). While I realize that the results can't actually be used as a diagnosis, I'm still really curious if there is actually changes in activity to my frontal lobes (it feels like it).

Does anyone know which of these scans would suit better for this type of impairment?

 

Jackson,

Excuse me if I've missed your info. I'm still trying to read about everyone's journeys and learn my way around the site. Can you give a little background or point me to where it's posted?

I think we can all relate to feeling that our brains have changed through the course of psych meds use. I'm curious as to why you feel the frontal lobes are effected. Do you have a baseline scan?

 

I know very little about imaging. However, my belief is that the brain (and mind) can be activated toward growth more easily than many people believe. "Mind Games' of a healthy kind!

 

 

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

Link to comment
Share on other sites

 

I've been strongly considering getting some type of scan to see what effects these drugs have had on my severely impaired/damaged brain, but had been wondering if I should try push for SPECT scan or fMRI. Since we have free healthcare where I'm from, I can possibly get it for free if I can convince my doctor about it (he knows my story and situation). While I realize that the results can't actually be used as a diagnosis, I'm still really curious if there is actually changes in activity to my frontal lobes (it feels like it).

Does anyone know which of these scans would suit better for this type of impairment?

 

Jackson,

Excuse me if I've missed your info. I'm still trying to read about everyone's journeys and learn my way around the site. Can you give a little background or point me to where it's posted?

I think we can all relate to feeling that our brains have changed through the course of psych meds use. I'm curious as to why you feel the frontal lobes are effected. Do you have a baseline scan?

 

I know very little about imaging. However, my belief is that the brain (and mind) can be activated toward growth more easily than many people believe. "Mind Games' of a healthy kind!

 

 

 

Hi, it's because I haven't posted an introduction yet. I've been putting it off for so long because my story is so long and painful, that writing out the details seems like a marathon due to my cognitive problems. I'm a migrater from "that other site" where I've posted quite a bit, you may or may not recognize me under the same username. Basically I'm suffering from a very severe neurotoxic adverse reaction from a tricyclic drug, and am now on 36th month out, still with huge problems and 0 quality of life. Near vegetable state.

 

The reason I feel my frontal lobes are heavily affected is because of the massive pains I feel in that area. It's one of my primary symptoms, very focused, sharp, stabbing pain and pressure in the left side of my frontal lobes. From the temple to the middle of the forehead. It's nothing like a regular headache, it's more like intense nerve pains, as if someone is continously stabbing that area. And it's been going on for 3 years now, with only slight improvement. Also I have the feeling that there is no activity in that part of the brain. It feels dead, like it's filled with concrete. No real activity and no real "flow" if you know what I mean. And then of course most of my symptoms are related to the frontal lobes (social, emotional, cognitive, information handling, decisionmaking, motivation, organizing, relating, connecting, creativity, abstract thinking and other higher mental functions) are all severely impaired or disappeared entirely.

 

That is why I am wondering what type of damage could have happened, and a scan like SPECT or fMRI could possibly give me some insight into a problem that I currently have very little actual knowledge of. Also I've had a CT scan early after the reaction (about 6 months out) that came out normal, but I believe a CT scan can only recognize structural changes like tumors, strokes, etc and not chemical or electrical changes, or changes in activity.

 

Hope that made sense :)

 

cheers

Suffered a severe adverse reaction to the tricyclic drug Nortriptyline in October 2008, which completely wrecked my brain and my nervous system. I am currently in my 38th month of recovery, with many symptoms still present, and with no improvement in quality of life, which is still nonexistant. The damage is so severe, that I fear I've been permanently disabled. I struggle to get outside as often as I can (still only for short periods of time), but I am still very much a vegetable mentally.

Link to comment
Share on other sites

Yes, it did make very clear sense. I wasn't on 'that other site' so had not heard your story. I'm very sorry for the pain you're experiencing, both physical and emotional. I've never considered myself a particularly creative person, but I have had fleeting moments of 'flow', so can imagine what you mean. I used to refer to it as 'dopa-flow' :rolleyes: Creativity is a fascinating area -- the paradoxical traits, etc.

I'm babbling now. Way too much time online!

 

I hope you find the answer to your question about scans. Are you working with a neurologist?

 

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

Link to comment
Share on other sites

Yes, it did make very clear sense. I wasn't on 'that other site' so had not heard your story. I'm very sorry for the pain you're experiencing, both physical and emotional. I've never considered myself a particularly creative person, but I have had fleeting moments of 'flow', so can imagine what you mean. I used to refer to it as 'dopa-flow' :rolleyes: Creativity is a fascinating area -- the paradoxical traits, etc.

I'm babbling now. Way too much time online!

 

I hope you find the answer to your question about scans. Are you working with a neurologist?

 

 

I think what I mean by flow, is also just the feeling of feeling good, feeling calm, feeling peace and being able to think and feel clearly. Being in the moment. My mind is in constant pain, agony, agitiation and pressure and I haven't experienced emotions for over 5 years (anhedonia is my absolute worst symptom, I had it both while on the drugs, but it persisted due to the advese reaction). It feels like someone smashed a hammer or detonated a nuke inside my frontal lobes. The sensations they give actually feel bruised and damaged. But I am also aware how we can not trust these sensations to give an accurate picture of what has happened, which is why I'm highly interested in an advanced scan to get a more objective picture of what type of damage has been inflicted.

 

I am currently attached to a doctor (my GP) and a specialized psychiatrist who is following my recovery every few months. I found him through an article on the internet, after I was admitted to a hospital early in withdrawal, describing withdrawal from tricyclics, which he wrote already back in 1998. So that told me that he was one of the few doctors here in Denmark who recognizes withdrawal, and the hazardous effects of ADs. I've seen him for about 2 years now, but he can't really do anything for me. He's basically just asking monitoring my healing progress (which is extremely slow) and gives (very limited) moral support.

 

I will try writing an intro post later today, so I can give the full details. It's been an incredibly turbulent and agonizing 5 years for me, seen upwards of 20 different doctors, psychiatrists and specialists, and nobody knows a dime about these drugs. So the only real support I've had has been on PP earlier, and then later by reading posts here. But I'm as trapped as can be, I'm a shell of my former self merely just existing from day to day, hoping that someday these horrible symptoms will subside.

Suffered a severe adverse reaction to the tricyclic drug Nortriptyline in October 2008, which completely wrecked my brain and my nervous system. I am currently in my 38th month of recovery, with many symptoms still present, and with no improvement in quality of life, which is still nonexistant. The damage is so severe, that I fear I've been permanently disabled. I struggle to get outside as often as I can (still only for short periods of time), but I am still very much a vegetable mentally.

Link to comment
Share on other sites

Hi Jackson, so sorry that you're suffering.

I can sadly relate. I also feel there are parts of my brain that are inactive in some way. I lost my creativity. I have pains in my forehead too. I do recall reading somewhere - it may have been on this site or the other one - that withdrawal can affect the prefrontal cortex somehow. I'm not sure where that info comes from though, so take it with a grain of salt.

 

I've also wondered about getting a brain scan but have no idea what to ask for. It frustrates me that there's no one out there studying these things.

 

By the way, have you tried any supplements? Fish oil is meant to aid brain function, might be worth trying? I'm a bit too scared to take it myself as it gave me anxiety the last time I took it.

 

Anyway, this isn't likely very helpful, but just wanted to say I understand what you're going through.

Off Lexapro since 3rd November 2011.

Link to comment
Share on other sites

Jackson,

 

I started a thread awhile back (Sept)on Interest vs.Anhedonia (something like that) and not being able to get past the 'initial interest' phase. May be in Symptoms section. I don't recall if you were here then or if any would be new to you.

http://survivingantidepressants.org/index.php?/topic/1203-disconnect-between-interest-and-actionmotivation/page__st__30

 

We all recognized it, I blamed it on so many different life circumstances in the past. I still think I have alot playing in and 'iatrogenic executive dysfunction' (my term) compounding matters.

 

I feel like my brain has gotten so sluggish at times. Then I'll get on a topic that interests me or I feel passionate about and I'm surprised at what is lurking in the recesses of my memory. It's really strange when I hit on something I have no recollection of learning, studying, etc. I've also dwelled on all of the years I've 'lost' by customary measures. Then I thought about all that I've read and studied that I wouldn't have if my life kept humming along per plan. It's a little compensation when I'm feeling lost (much of the time).

 

I still have significant probs w/making a plan, carrying it out, etc. I used to travel alot for work. It was nothing to get myself packed, deal w/business matters, prepare care for animals, and get to the airport on time. Now, I have a hard time just getting myself packed for a weekend. I frustrate the few friends I have left because I have a tough time planning. When I do get somewhere, it's usually by accident.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

Link to comment
Share on other sites

  • Administrator

Jackson, many people have difficulty reviewing and writing their stories, it's so painful. But your Intro post would be very much appreciated by people who are similarly suffering.

 

I am glad you found a sympathetic doctor. I would like to add him to our list http://survivingantidepressants.org/index.php?/topic/988-recommended-doctors-therapists-or-clinics/ Could you post his name and contact information there?

 

As for scans, as I understand it, neither SPECT nor fMRI are going to be helpful in identifying the kind of damage we have.

 

First of all, although you feel pain (and I've felt it, too), we don't have what's called organic damage, meaning tissue destruction. What we have is autonomic dysregulation, which won't show up in any scans or tests -- which is why when people have all kinds of tests, they are almost always "normal."

 

Even in stroke, where there is organic damage, it's not clear what fMRIs scans show (see http://stroke.ahajournals.org/content/34/5/e26.full)

 

The second reason is, as the article above explains, it isn't clear what these scans actually show. Researchers are taking liberties interpreting them. They see what they want to see in them.

 

The last reason is, if you had a scan, what would your doctor compare it to? What would be "normal" for you? Any individual would have to have a baseline scan first and then a scan later to see if anything changed -- and still, all it would show is blood flow.

 

The SPECT scans used and popularized by Dr. Daniel Amen for the purpose of drawing customers to his clinic are highly questionable. There's a large question about whether a "normal" baseline scan has been established. See http://www.sciencebasedmedicine.org/index.php/spect-scans-at-the-amen-clinic-a-new-phrenology/

 

Insurance companies consider SPECT scans for diagnosis of psychiatric disorders to be a research tool, an experimental procedure not yet ready for prime time. In my opinion, Amen has jumped the gun by using SPECT scanning clinically before research has validated his methods. He thinks he is helping patients; but without proper controlled studies, he can’t really know for sure. The FDA would never have approved a new medication on the basis of the kind of evidence Amen is going by. We don’t know (1) whether the scans really improve accuracy of diagnosis, (2) whether the defects we see represent causes or results of the illness, (3) what the progressive changes from scan to scan really mean, (4) whether seeing a picture of their brain actually improves patients’ understanding of their disease, (5) whether it improves their compliance with treatment, or (6) whether Amen’s whole process actually improves patient-oriented outcome compared to optimal treatment without scans. Amen is convinced his methods work, because his patients improve, and because they give him grateful feedback and reinforcement. He may be right, or he may be wrong. Quacks all have patients who improve and give them reinforcement too, even for the most nonsensical remedies that can only act as placebos.

 

The charge is $3250 up front, and most insurance companies will not provide reimbursement because they consider it experimental. There is a 10% discount for testing additional family members. The testing procedure takes four days. The Amen Clinic’s informed consent form is misleading: it does not divulge that the American Psychiatric Association has spoken out against SPECT scanning for these purposes and has warned of potential harm – especially to children, who are more susceptible to the effects of radiation.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to comment
Share on other sites

Jackson,

 

I started a thread awhile back (Sept)on Interest vs.Anhedonia (something like that) and not being able to get past the 'initial interest' phase. May be in Symptoms section. I don't recall if you were here then or if any would be new to you.

http://survivingantidepressants.org/index.php?/topic/1203-disconnect-between-interest-and-actionmotivation/page__st__30

I think I've read some of it, but I'll take another look, thanks!

 

 

I feel like my brain has gotten so sluggish at times. Then I'll get on a topic that interests me or I feel passionate about and I'm surprised at what is lurking in the recesses of my memory. It's really strange when I hit on something I have no recollection of learning, studying, etc. I've also dwelled on all of the years I've 'lost' by customary measures. Then I thought about all that I've read and studied that I wouldn't have if my life kept humming along per plan. It's a little compensation when I'm feeling lost (much of the time).

 

I still have significant probs w/making a plan, carrying it out, etc. I used to travel alot for work. It was nothing to get myself packed, deal w/business matters, prepare care for animals, and get to the airport on time. Now, I have a hard time just getting myself packed for a weekend. I frustrate the few friends I have left because I have a tough time planning. When I do get somewhere, it's usually by accident.

I don't feel interest in anything at all though. I used to be full of life, had many activities a pretty big social network, was extremely active, but now I am just mentally dead. I can't experience emotion. I don't respond to stimuli, such as music. I don't enjoy it at all, it usually just annoys or agitates me. And that is wierd because I was a professional breakdancer pre-medication with music obviously being a major part of my life. I can't feel excited or feel pleasure. My brain is simply unable to experience it. The front part of my brain is numb, or dead. I have no interest in anything or anyone. I am completely non functional, nearly bedridden/housebound for the better part of 3 years. Only in the past 7 months have I been able to get out a little bit, and do very limited exercise. And even that still makes me sick. My brain and nervous system has been completely fried, and I am dependant on my mom at home to bring me food still, otherwise I would likely not eat the majority of the time, simply because executing simple tasks is very difficult (and painful). And I am an above average intelligence 23 year old male, who should be chasing a career, have loving relationships, great social life, living independently in my own apartment at this time. But instead I'm a zombie trapped in an iatrogenically damaged brain. My quality of life is 0. I'm still in more or less raw survival mode on my 36th month and counting. My personality is GONE.

 

 

 

Jackson, many people have difficulty reviewing and writing their stories, it's so painful. But your Intro post would be very much appreciated by people who are similarly suffering.

I will set it as my focus, and then I'll perhaps get to writing it before the end of the week. Not that I have much else to do, but self expression is another part of my mind that is severely compromised.

 

I am glad you found a sympathetic doctor. I would like to add him to our list http://survivingantidepressants.org/index.php?/topic/988-recommended-doctors-therapists-or-clinics/ Could you post his name and contact information there?

 

I'm not sure I would recommend him to anyone else in my situation, mostly because he doesn't actually understand, study or care about psychotropic damage, he merely believes in listening to, and working with, his patients in all circumstances. So he has vowed to assist me with whatever I decide to do, and is not judgemental to the things I explain to him about my situation, but he doesn't have any knowledge or answers that could help other sufferers like me. He is just passionate about his job and his patients.

 

As for scans, as I understand it, neither SPECT nor fMRI are going to be helpful in identifying the kind of damage we have.

 

First of all, although you feel pain (and I've felt it, too), we don't have what's called organic damage, meaning tissue destruction. What we have is autonomic dysregulation, which won't show up in any scans or tests -- which is why when people have all kinds of tests, they are almost always "normal."

 

Even in stroke, where there is organic damage, it's not clear what fMRIs scans show (see http://stroke.ahajournals.org/content/34/5/e26.full)

 

The second reason is, as the article above explains, it isn't clear what these scans actually show. Researchers are taking liberties interpreting them. They see what they want to see in them.

 

The last reason is, if you had a scan, what would your doctor compare it to? What would be "normal" for you? Any individual would have to have a baseline scan first and then a scan later to see if anything changed -- and still, all it would show is blood flow.

As I understand it, the damage done could possibly be physiological in nature, as in, it has to do with destruction of, or downregulation of postynaptic receptors. So while a scan like CT which shows tissue/structural damage is simply not advanced or sophisticated enough to show this type of damage, a fMRI or PET/SPECT could show the lack of activity in certain regions of the brain. While that wouldn't be useful in determining a diagnosis (because we already know it is caused by medication), nor a treatment (we simply know too little to correlate brain activity with brain "treatments"), perhaps the scan results would be help with legal, insurance and rehabilitation issues. Because at the moment, my illness is not recognized by ANY profession or any establishment in the country. It is invisible, unknown, and unexplored scientifically. That means I am lost in the system. I can't get granted disability, I can't get financial compensation, I can't get any type of serious social security benefits (and here in Denmark we have a VERY good social security web), but I am simply not liable for anything, because my mental damage is not acknowledged. If I could get a scan that can prove that my brain is severely under-active in certain areas, regardless of cause, perhaps I would be better off in regards to the system.

 

The SPECT scans used and popularized by Dr. Daniel Amen for the purpose of drawing customers to his clinic are highly questionable. There's a large question about whether a "normal" baseline scan has been established. See http://www.sciencebasedmedicine.org/index.php/spect-scans-at-the-amen-clinic-a-new-phrenology/

I looked at the Amen Clincs site as well, and they do indeed claim that they can distinguish issues of toxicity in their SPECT scans. But then again, I understand they are a business and need to sell their product, but it seems to me like getting a SPECT scan could actually uncover some of the abnormalities caused in brain activity and bloodflow that seems to be a likely culprit in my situation. Not that the scan would help me find a treatment better, but as stated above it could help me legally.

 

I am still unsure if an fMRI or SPECT or even PET would be the right candidate for this, and in the end it is my doctor I need to convince since it is our government or county who has to pay for it.

Suffered a severe adverse reaction to the tricyclic drug Nortriptyline in October 2008, which completely wrecked my brain and my nervous system. I am currently in my 38th month of recovery, with many symptoms still present, and with no improvement in quality of life, which is still nonexistant. The damage is so severe, that I fear I've been permanently disabled. I struggle to get outside as often as I can (still only for short periods of time), but I am still very much a vegetable mentally.

Link to comment
Share on other sites

  • Administrator

Jackson, no scan, fMRI, SPECT, or PET, would show downregulation of receptors. That can be seen only by a microscope, maybe even an electron microscope, and the tissue would have to be removed from your brain. Scans would find the surrounding tissue to be normal. Downregulation is physical, but it is a normal behavior of neurons. Downregulation in itself is not damage.

 

To document a disability claim, you'd have to find an expert to say the scan (of whatever type) indicates a pathological condition that is disabling. These scans are not used for diagnostics. You might find such an expert among researchers. You would need to contact them one by one to find out if 1) they'd do the scan 2) they'd write a report supporting disability.

 

I doubt pursuing this is going to be worthwhile for you.

 

Doesn't your disability system recognize psychiatric disability?

 

In this topic, you've already written all you need for an Intro topic. All you need to do is copy and paste!

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to comment
Share on other sites

Jackson, no scan, fMRI, SPECT, or PET, would show downregulation of receptors. That can be seen only by a microscope, maybe even an electron microscope, and the tissue would have to be removed from your brain. Scans would find the surrounding tissue to be normal. Downregulation is physical, but it is a normal behavior of neurons. Downregulation in itself is not damage.

That makes sense, however I would be hard pressed to believe that my condition is only caused by downregulation of receptors. Something is messed up really badly inside my head, and if I could reveal just a lack of activity or blood flow, I would be satisfied with the scanning. I'm also of the belief that prolonged withdrawal syndrome (which most people here suffer from), and direct adverse reaction (which I, and a few others, have) share many of the same symptoms, but are not entirely similar in nature. But it's impossible to tell really, what really concerns me is the complete lack of mental function I have, combined with the focused nerve pains. As I perceive it, the pains themselves indicate that serious altercation has happened in my head, and if I can get to see some of that visually on a scan, it would give me some type of peace of mind, or acknowledgement that what I feel and experience is real.

 

To document a disability claim, you'd have to find an expert to say the scan (of whatever type) indicates a pathological condition that is disabling. These scans are not used for diagnostics. You might find such an expert among researchers. You would need to contact them one by one to find out if 1) they'd do the scan 2) they'd write a report supporting disability.

 

I doubt pursuing this is going to be worthwhile for you.

 

Doesn't your disability system recognize psychiatric disability?

I've had a lot of trouble with the system so far. What happens is that when you get sick, regardless of cause, you have to attend an unemployment-center in your county. They will grant you social security benefits based on your circumstances, while you are unemployed. For someone under 25 who lives at home, you get $500 a month. Once you turn 25 it gets bumped to $1900. The bump up from that, is our version of disability, called "early retirement" which is $3100. It's a permanent grant, which means you leave the unemployment-system forever once you have been approved. The problem is, jumping from unemployment to early retirement is a very very strict process, because the money has to be payed for the rest of your life, directly out of the county's own pocket. This means they are extremely reluctant in certain counties to ever grant you that benefit, even for people with obvious disabilities like missing both arms and legs. And there's nothing in between. So I am currently stuck in the process of trying to get early retirement granted, and the burden of proof on me is massive.

 

Among others, I need to fullfill these requirements:

 

1) You need to have a lasting chronic disability.

 

2) All possible treatment options must have been exhausted.

 

3) You must have had a job trial, and deemed unable for a workplace

 

With a problem like mine, proving either of these is almost impossible. The last one I can, but the requirements to (1) eludes me, because no one can give me a diagnosis! and even those who believe in my self-diagnosis (neurotoxic adverse reaction), can't prove that it is lasting, as there is no experts on it, and no literature about it. Even I personally don't believe it is permanent. So I sit here with hollow arguments, as there is no real prognosis. Furthermore, the second opinion psychiatrists they send you to as part of the process, will give you a wrong diagnosis and suggest medicine as a treatment option (bipolar, psychotic, general anxiety, depression, or what have you), so I'm trapped in (2) as well. So getting disability/retirement is pretty much out of the question, at least for the next many years. If my symptoms persists, perhaps down the road it would be possible to fight the system. But for the next two years, Im stuck with the 500 dollars to live for. But if we get that far out, and nothing has changed, I probably won't want to continue living either way.

 

I was just thinking that an brain-activity scan could possibly help my case.

Suffered a severe adverse reaction to the tricyclic drug Nortriptyline in October 2008, which completely wrecked my brain and my nervous system. I am currently in my 38th month of recovery, with many symptoms still present, and with no improvement in quality of life, which is still nonexistant. The damage is so severe, that I fear I've been permanently disabled. I struggle to get outside as often as I can (still only for short periods of time), but I am still very much a vegetable mentally.

Link to comment
Share on other sites

 

Jackson, no scan, fMRI, SPECT, or PET, would show downregulation of receptors. That can be seen only by a microscope, maybe even an electron microscope, and the tissue would have to be removed from your brain. Scans would find the surrounding tissue to be normal. Downregulation is physical, but it is a normal behavior of neurons. Downregulation in itself is not damage.

That makes sense, however I would be hard pressed to believe that my condition is only caused by downregulation of receptors. Something is messed up really badly inside my head, and if I could reveal just a lack of activity or blood flow, I would be satisfied with the scanning. I'm also of the belief that prolonged withdrawal syndrome (which most people here suffer from), and direct adverse reaction (which I, and a few others, have) share many of the same symptoms, but are not entirely similar in nature. But it's impossible to tell really, what really concerns me is the complete lack of mental function I have, combined with the focused nerve pains. As I perceive it, the pains themselves indicate that serious altercation has happened in my head, and if I can get to see some of that visually on a scan, it would give me some type of peace of mind, or acknowledgement that what I feel and experience is real.

 

To document a disability claim, you'd have to find an expert to say the scan (of whatever type) indicates a pathological condition that is disabling. These scans are not used for diagnostics. You might find such an expert among researchers. You would need to contact them one by one to find out if 1) they'd do the scan 2) they'd write a report supporting disability.

 

I doubt pursuing this is going to be worthwhile for you.

 

Doesn't your disability system recognize psychiatric disability?

I've had a lot of trouble with the system so far. What happens is that when you get sick, regardless of cause, you have to attend an unemployment-center in your county. They will grant you social security benefits based on your circumstances, while you are unemployed. For someone under 25 who lives at home, you get $500 a month. Once you turn 25 it gets bumped to $1900. The bump up from that, is our version of disability, called "early retirement" which is $3100. It's a permanent grant, which means you leave the unemployment-system forever once you have been approved. The problem is, jumping from unemployment to early retirement is a very very strict process, because the money has to be payed for the rest of your life, directly out of the county's own pocket. This means they are extremely reluctant in certain counties to ever grant you that benefit, even for people with obvious disabilities like missing both arms and legs. And there's nothing in between. So I am currently stuck in the process of trying to get early retirement granted, and the burden of proof on me is massive.

 

Among others, I need to fullfill these requirements:

 

1) You need to have a lasting chronic disability.

 

2) All possible treatment options must have been exhausted.

 

3) You must have had a job trial, and deemed unable for a workplace

 

With a problem like mine, proving either of these is almost impossible. The last one I can, but the requirements to (1) eludes me, because no one can give me a diagnosis! and even those who believe in my self-diagnosis (neurotoxic adverse reaction), can't prove that it is lasting, as there is no experts on it, and no literature about it. Even I personally don't believe it is permanent. So I sit here with hollow arguments, as there is no real prognosis. Furthermore, the second opinion psychiatrists they send you to as part of the process, will give you a wrong diagnosis and suggest medicine as a treatment option (bipolar, psychotic, general anxiety, depression, or what have you), so I'm trapped in (2) as well. So getting disability/retirement is pretty much out of the question, at least for the next many years. If my symptoms persists, perhaps down the road it would be possible to fight the system. But for the next two years, Im stuck with the 500 dollars to live for. But if we get that far out, and nothing has changed, I probably won't want to continue living either way.

 

I was just thinking that an brain-activity scan could possibly help my case.

 

Jackson,

I can't tell you how well I understand your Catch-22 w/disability. I have a similar all-or-nothing situation w trying to get back to work after being on disability. Glad to tell you more later; just wanted to say I do understand.

A few thoughts:

I know a bit about the system in the US and I believe that disability is not tied to a specific diagnosis. EX: my DA is based on functional impairment due to chronic pain. I have neck issues--soft tissue/muscle weakness that does not show on scan, EMG, etc. I believe the same would apply to psych disability. Depression may be disabling to one person while others are functional and able to work. Most docs say that they 'treat the patient and not the xray' for that reason. Something may show on film, but not cause symptoms or impairment and vice-versa. I think a thorough neuro workup could detect problems or deficits. I worked w/neurologists who treated different types of dementia and there are questionaires to elicit responses from diff brain areas, check for recall, etc. I think the Mini Mental Status Exam is one. Funny story...my mother had a workup awhile back and the doc asked her for words that started with the letter 'F'. Of course, one particular word comes to most peoples' minds! I never did find out what that question supposedly checks for or relates to.

 

I have 2 friends who went to Dr. Amen and did the scan. I'm seeing one tomorrow. I'll ask what they thought of his scan-based treatment. I do know that they no longer see him. My doc is not fond of him, but it's a competition thing.

 

I agree...I don't believe it's irreversible.

 

 

 

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

Link to comment
Share on other sites

  • Administrator

Jackson, I did not mean to imply your symptoms are "all in your mind." Autonomic dysfunction causes real pain and real physical symptoms.

 

As I've explained many times, receptor downregulation causes a cascade of effects throughout the nervous system and often autonomic disruption that takes a long time to resolve. This process is described in Harvey 2003 Neurobiology of antidepressant withdrawal

 

The shock to the nervous system also causes neuropsychiatric symptoms such as depersonalization, demotivation, and emotional anesthesia.

 

If you want to go the scan route, I still suggest you find an expert first, someone who will testify to what the scan means. It doesn't make any sense to present a review board with just a scan, no matter how sophisticated. They won't see anything in it.

 

How about contacting Dr. David Healy in the UK? He's recognized as an expert witness on adverse drug effects and withdrawal syndrome. Perhaps he will examine you and certify to your disability.

 

Or, find a forensic psychiatrist in Denmark who will support your claim.

 

Bar, as I understand it, apart from the scans, Amen's clinic offer semi-holistic psychiatry such as you can find just about anywhere, adding some nutritional and psychological support to conventional drug treatment.

 

Dr. Amen is a very engaging speaker and, I'm sure, a nice man. But, in my opinion, his business falls into the scam category. It's really unfortunate that, given psychiatry's glaring faults -- a scam on its own, you might say -- "alternatives" are frequently untrustworthy as well.

 

From the Amen Clinic Web site http://www.amenclinics.com/clinics/patients/

The cost for a comprehensive evaluation at our Newport or Reston office is $4,125.00 (includes concentration, baseline, and QEEG scans). Patients will undergo 4 days of appointments for the following evaluation: 2 SPECT scans, QEEG scan, SCID, medical history evaluation, and a follow-up with Dr. Kraus at our Newport Beach office or Teresa at our Reston office. Brain maps will also be included in a patient's notebook when leaving the clinic.

 

The cost of a complete evaluation is $3,575.00 (includes concentration and baseline scans). The patients will need to allow 4 days of appointments to undergo the entire evaluation process.

 

Each appointment will last approximately 1-2 hours per day. For patients outside of California, a phone consultation is advised with one of the physician staff to determine if the Clinic is the appropriate place for an evaluation. A consultation by phone will cost $175.00 per half hour.

See these consumer reviews of the Amen Clinics:

 

www.yelp.com/biz/amen-clinic-fairfield

http://www.yelp.com/biz/amen-clinic-newport-beach-newport-beach

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to comment
Share on other sites

Hi Jackson, so sorry that you're suffering.

I can sadly relate. I also feel there are parts of my brain that are inactive in some way. I lost my creativity. I have pains in my forehead too. I do recall reading somewhere - it may have been on this site or the other one - that withdrawal can affect the prefrontal cortex somehow. I'm not sure where that info comes from though, so take it with a grain of salt.

 

I've also wondered about getting a brain scan but have no idea what to ask for. It frustrates me that there's no one out there studying these things.

 

By the way, have you tried any supplements? Fish oil is meant to aid brain function, might be worth trying? I'm a bit too scared to take it myself as it gave me anxiety the last time I took it.

 

Anyway, this isn't likely very helpful, but just wanted to say I understand what you're going through.

 

Hi Phil, I'm sorry for having skipped your reply, I really didn't mean to, but has severe problems with focus and attention, so often times things slip for me. Even after reading a post, I will reply to it and forget to adress all of the points that was raised, just because I already forgot what I read. Brain wai u do dis!?

 

About your pains, that is very interesting to me. Because even after reading PP for years, it seems to be quite rare that people have this symptom. Some people describe pressure in the head or migraines, but the pain I feel is different from that. My pains are very located and sharp, almost as if im being stabbed with a pin. There are 2 points; one in the left temple, and one in the forehead.

 

If visualized it would look something like this:

 

Posted Image

 

Quick drawing I made in paint. The two focused areas is where the pains radiate from. The pressure extends from one point to the other, over across the forehead, and somewhat down to the nose. The yellow indicates where I get electrical shocks. They are only in the temple, and only in the left side. I still get these electrical shocks pretty frequently at 36 months out.

 

I have tried various supplements such as magnesium, fish oil, multivitamins, c-vitamin but nothing seems to have any effect at all, and I lose motivation to take it.

 

I recently had a boost of D-vitamin supplements as welldue to low levels as shown in my recent blood-work. Normal values are between 50 and 200 nMol/L I believe, and mine was at 23. But that was also after being pretty much housebound and inactive for 4 years, so wasn't that strange. Over a period of 3 weeks, i shot up to 153, and I felt pretty much no difference at all in my condition/mood/symptoms, so I guess I've kinda given up hope in supplements altogether.

 

 

Jackson,

I can't tell you how well I understand your Catch-22 w/disability. I have a similar all-or-nothing situation w trying to get back to work after being on disability. Glad to tell you more later; just wanted to say I do understand.

A few thoughts:

I know a bit about the system in the US and I believe that disability is not tied to a specific diagnosis. EX: my DA is based on functional impairment due to chronic pain. I have neck issues--soft tissue/muscle weakness that does not show on scan, EMG, etc. I believe the same would apply to psych disability. Depression may be disabling to one person while others are functional and able to work. Most docs say that they 'treat the patient and not the xray' for that reason. Something may show on film, but not cause symptoms or impairment and vice-versa. I think a thorough neuro workup could detect problems or deficits. I worked w/neurologists who treated different types of dementia and there are questionaires to elicit responses from diff brain areas, check for recall, etc. I think the Mini Mental Status Exam is one. Funny story...my mother had a workup awhile back and the doc asked her for words that started with the letter 'F'. Of course, one particular word comes to most peoples' minds! I never did find out what that question supposedly checks for or relates to.

 

I have 2 friends who went to Dr. Amen and did the scan. I'm seeing one tomorrow. I'll ask what they thought of his scan-based treatment. I do know that they no longer see him. My doc is not fond of him, but it's a competition thing.

 

I agree...I don't believe it's irreversible.

 

Ah yea, I've had one of those checkups at a neurologist as well. Twice actually. No abnormalities.

- I have had an EEG and a EKG. Normal.

- CT scan. Normal.

- Schizophrenia expert 4 hour VIDEO interview/analysis. Normal.

- Psychosis 3 hour interview. Normal

- 4 hour tests for all things intelligence/memory/cognition/attention at a neuropsychologist, where I had to complete about 30-40 different mental tasks. This was the only examination I've had in these 5 years that showed abnormalities in certain areas. However the neuropsychologist concluded in the paper review that my results was way too ambiguous to assume any type of damage. I'd love to go into details about this at some other time if anyones interested in what a test like this contains, but it was completely useless to me, other than to get relief that my 'academic and intellectual potential' was above average, but my working memory and attention was very poor and inconsistent. He couldn't conclude any diagnosis on my results and simply wrote in the conclusion that my problems seemed to be "in the personality spectrum and of psychiatric character". Highly suprising (not).

 

 

Jackson, I did not mean to imply your symptoms are "all in your mind." Autonomic dysfunction causes real pain and real physical symptoms.

 

As I've explained many times, receptor downregulation causes a cascade of effects throughout the nervous system and often autonomic disruption that takes a long time to resolve. This process is described in Harvey 2003 Neurobiology of antidepressant withdrawal

 

The shock to the nervous system also causes neuropsychiatric symptoms such as depersonalization, demotivation, and emotional anesthesia.

 

If you want to go the scan route, I still suggest you find an expert first, someone who will testify to what the scan means. It doesn't make any sense to present a review board with just a scan, no matter how sophisticated. They won't see anything in it.

 

How about contacting Dr. David Healy in the UK? He's recognized as an expert witness on adverse drug effects and withdrawal syndrome. Perhaps he will examine you and certify to your disability.

 

Or, find a forensic psychiatrist in Denmark who will support your claim.

 

Oh I didn't mean to sound that way at all. I have read many many of your posts Alto, and I highly respect your knowledge on the subject. Most of what I know, is from your posts actually. What I mean to say, was that the hypothesis that prolonged withdrawal syndrome is caused by longlasting downregulation of postsynaptic receptors seems highly likely. What I am unsure about, is how an Adverse Reaction and Prolonged Withdrawal Syndrome differs from each other. Because there is a difference between the two, won't you agree? Maybe they are much of the same, I'm really not sure, but the healing timelines seems to differ.

 

Finding a psychiatrist here who knows anything about it, is impossible. I've already tracked down the most highly esteemed and experienced psych in the country, and he can still only shrug his shoulders to my situation (he is a nice man though). Writing a letter do David Healy could be an option. I think I will look into that, thanks for the suggestion. I was under the impression that he couldn't help private cases like mine, but was fighting on the public and class action fronts instead.

 

Either way thanks everyone for your responses. I know my story is pretty complicated, Im working on the intro post at the moment to clarify things better.

Suffered a severe adverse reaction to the tricyclic drug Nortriptyline in October 2008, which completely wrecked my brain and my nervous system. I am currently in my 38th month of recovery, with many symptoms still present, and with no improvement in quality of life, which is still nonexistant. The damage is so severe, that I fear I've been permanently disabled. I struggle to get outside as often as I can (still only for short periods of time), but I am still very much a vegetable mentally.

Link to comment
Share on other sites

Hey Jackson,

 

I would like to hear more about the neuropsych testing when you have time. Sounds interesting. Do you think there is a correlation between higher intellectual/learning ability (can't see how you worded that) and being aware of a change? Just curious. I'm a tad analytical ;)

I was at the ISEPP Conference a few weeks ago in Los Angeles. Sat in on panel discussion w "Survivors". Therewere several Harvard people in the group. One was at McClean Hospital during his Harvard years and that prompted a few others to mention Harvard. It wasn't a surprise, but interesting to see it represented in one room.

 

I asked my friend about Dr. Amen's program. I thought that both he and his wife had done it, but she didn't. From what he recalled, the results were very general "slight difference from controls your age which indicate a mood disorder and ADHD" Rx: Neurontin for mood. Stimulant for ADHD. From what he's learned since, the results don't vary greatly between patients.

I was very surprised that the psychologist he went to did therapy based on the scan and only the scan.

 

I would only go to his promo talk out of curiosity. If it was free. And they fed me. B)

 

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

Link to comment
Share on other sites

Awesome graphics, btw!! Is that your profession?

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

Link to comment
Share on other sites

Hey Jackson,

 

I would like to hear more about the neuropsych testing when you have time. Sounds interesting. Do you think there is a correlation between higher intellectual/learning ability (can't see how you worded that) and being aware of a change? Just curious. I'm a tad analytical ;)

I was at the ISEPP Conference a few weeks ago in Los Angeles. Sat in on panel discussion w "Survivors". Therewere several Harvard people in the group. One was at McClean Hospital during his Harvard years and that prompted a few others to mention Harvard. It wasn't a surprise, but interesting to see it represented in one room.

 

I asked my friend about Dr. Amen's program. I thought that both he and his wife had done it, but she didn't. From what he recalled, the results were very general "slight difference from controls your age which indicate a mood disorder and ADHD" Rx: Neurontin for mood. Stimulant for ADHD. From what he's learned since, the results don't vary greatly between patients.

I was very surprised that the psychologist he went to did therapy based on the scan and only the scan.

 

I would only go to his promo talk out of curiosity. If it was free. And they fed me. B)

 

 

I can write something about the Neuropsychologic evaluation in a new topic, also to see if anyone has had a similar experience to me. It was a necessary for me to take, as a part of trying to get disability, so I kinda had to go along with it. I'm not entirely sure what you meant by this:

"Do you think there is a correlation between higher intellectual/learning ability (can't see how you worded that) and being aware of a change?".

Aware of a change in ones condition or? I am also extremely analytical, that has caused me quite a lot of stress though. But I believe it has also saved my butt in this mess, where I had to figure out everything for myself, because I couldn't rely on the system.

 

A bit disappointet to hear about the scan. If they can diagnose you with a mood disorder and prescribe hazardous drugs just from "slight changes" in a 3D image of the brain, that to me is a bit worrying. I thought a scan like that was only supposed to be used as supplementative evidence for otherwise sound clinical assessment. I have an appointment with my doctor in 2 weeks, I will bring up the subject of brain scans, and discuss with him if he sees any reason for me to get one. Perhaps he has another perspective that I've overlooked.

 

Awesome graphics, btw!! Is that your profession?

 

Haha nah I can't claim that as my own work :) the head was simply grapped directly off of google images, and then I just splashed some color on it in MS paint. I wouldn't call myself a graphical talent by any stretch of the imagination B)

 

I actually took 3 years of Gymnasium (I got sick a few months before graduating). Which is about equilevant to your High School Id say. We have 9 years of mandatory public school, and then we have 3 years of Gymnasium (from age 15-18) which is secondary basic eduction as a prerequisite to University.

 

So all I have is my public school diploma and I'm 23. **** my life.

Suffered a severe adverse reaction to the tricyclic drug Nortriptyline in October 2008, which completely wrecked my brain and my nervous system. I am currently in my 38th month of recovery, with many symptoms still present, and with no improvement in quality of life, which is still nonexistant. The damage is so severe, that I fear I've been permanently disabled. I struggle to get outside as often as I can (still only for short periods of time), but I am still very much a vegetable mentally.

Link to comment
Share on other sites

  • Administrator

Absolutely, Jackson, start another topic. You're covering so many fascinating subjects here, it would be a shame for this info to be buried as we're getting more and more off-topic here.

 

Bar, Neurontin and a stimulant for a "slight" difference in scan? Doesn't that seem odd to you? I sure as heck wouldn't take that combination for anything, especially when the diagnostic is so vague. The lack of variability from one scan to the next indicates they may be looking at NORMAL scans, or whatever they're looking for doesn't show up on a scan.

 

....

Oh I didn't mean to sound that way at all. I have read many many of your posts Alto, and I highly respect your knowledge on the subject. Most of what I know, is from your posts actually. What I mean to say, was that the hypothesis that prolonged withdrawal syndrome is caused by longlasting downregulation of postsynaptic receptors seems highly likely. What I am unsure about, is how an Adverse Reaction and Prolonged Withdrawal Syndrome differs from each other. Because there is a difference between the two, won't you agree? Maybe they are much of the same, I'm really not sure, but the healing timelines seems to differ.

 

Finding a psychiatrist here who knows anything about it, is impossible. I've already tracked down the most highly esteemed and experienced psych in the country, and he can still only shrug his shoulders to my situation (he is a nice man though). Writing a letter do David Healy could be an option. I think I will look into that, thanks for the suggestion. I was under the impression that he couldn't help private cases like mine, but was fighting on the public and class action fronts instead.

 

Either way thanks everyone for your responses. I know my story is pretty complicated, Im working on the intro post at the moment to clarify things better.

 

An "adverse reaction" is a general term, "prolonged withdrawal syndrome" is more specific. Loosely, "prolonged withdrawal syndrome" is a type of "adverse reaction" -- although most adverse reactions happen *while* you're taking the drug rather than after you've quit.

 

Forensic psychiatrists are available for hire. In the US, they work with attorneys; here, you'd probably have to initiate a lawsuit to get your disability benefits. People do this all the time in the US, there are lawyers firms that specialize in it.

 

Please do start an Intro post. Just start at the beginning, tell your story simply, don't try to include all the details. You'll have plenty of room to do that later!

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to comment
Share on other sites

Bar, Neurontin and a stimulant for a "slight" difference in scan? Doesn't that seem odd to you? I sure as heck wouldn't take that combination for anything, especially when the diagnostic is so vague. The lack of variability from one scan to the next indicates they may be looking at NORMAL scans, or whatever they're looking for doesn't show up on a scan.

Forensic psychiatrists are available for hire. In the US, they work with attorneys; here, you'd probably have to initiate a lawsuit to get your disability benefits. People do this all the time in the US, there are lawyers firms that specialize in it.

Please do start an Intro post. Just start at the beginning, tell your story simply, don't try to include all the details. You'll have plenty of room to do that later!

 

RE: "slight diff in scan"....apparently my sarcasm doesn't translate in text B) This was probably more years ago than my blurry memory wants to believe. N was used pretty heavily in late 90s early 2000s. Treatment of choice tends to something 'cutting edge' and 'patent protected' and the topic around the 'dinner tables' B)B)B) Prescribing data would be interesting...

The psychologist doing therapy according to scan is more disturbing.

 

Jackson!! You are talented!!!! I'd swap my Bachelor's in Communications and work experience for your creative talent in a heartbeat!

 

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

Link to comment
Share on other sites

Forensic psychiatrists may offer a different point of view, esp if they've worked w prison population. I suspect they recognize overprescribing among general population.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

Link to comment
Share on other sites

  • Administrator

Okay, we agree. I remember the Neurontin fad. Oh, where is the wonder drug now? BTW, it has its own withdrawal difficulties.

 

I would like to close the discussion of the Amen Clinics here. I've added it to the No recommendations for commercial programs to assist withdrawal list.

 

Call me excessively opinionated, but I think discussing bogus "alternative" practices is not worth the effort (why do this when we have all of psychiatry to take shots at?) and I don't want to be posting the same arguments over and over.

 

So, if you want to try any of these miracle cures, go ahead, but no discussions on this site.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to comment
Share on other sites

I just found this article about how fMRI brain scans can show evidence of chemo brain. I am too tired to provide analysis but I thought I would provide the link:

 

http://www.medscape.com/viewarticle/753663

 

Free registration is required.

Drug cocktail 1995 - 2010
Started taper of Adderall, Wellbutrin XL, Remeron, and Doxepin in 2006
Finished taper on June 10, 2010

Temazepam on a PRN basis approximately twice a month - 2014 to 2016

Beginning in 2017 - Consumption increased to about two times per week

April 2017 - Increased to taking it full time for insomnia

Link to comment
Share on other sites

  • 7 months later...

Hi everyone,

 

Several months ago, I had a SPECT imaging scan done of my brain because I was suffering so badly after going off Zoloft, with both physical and emotional symptoms. The scan showed that I have "moderate to severe hypoperfusion to the frontal and temporal lobes" of my brain, the left side being more severe than the right. Hypoferfusion is basically a fancy word for decreased blood flow.

 

I believe that the hypoperfusion was directly caused by the Zoloft because my symptoms coincide with discontinuing the drug. But the doctors who did the scan said that that was not "in the medical literature", and suggested instead that it was caused by a chronic viral or bacterial infection, such as Lyme disease. Well, I have NEVER had a chronic bacterial or viral infection, and I think I would know if I did!

 

I have tried to get help for this injury, but every doctor I have seen just blows me off. I don't know what to do. I am at the end of my rope. I am not able to work because my symptoms are so bad, and I don't know what to do financially. Should I apply for disability? I can't find a doctor who knows anything about this or how to treat it. They just keep throwing more drugs at me.

 

Do you think my brain will recover on its own? Do you know of any doctor who can help me? What should I do for financial support???

 

Thank you all for any advice or support.

Zoloft 50mg for 7.5 years

Developed akathisia while on the drug Dec. 2009

Severe withdrawal/damage

Drug-free since May 5, 2011

Link to comment
Share on other sites

  • Administrator

Sunny, the SPECT scans really don't show anything useful in diagnosing psychiatric or psychological conditions. All they can show is definite physical masses like tumors. That "moderate to severe hypoperfusion" is normal variation in blood circulation in the brain. No doctor can treat it because it does not correlate to an abnormal condition.

 

I am sorry you went to the trouble and expense to get these scans.

 

American Medical Association Journal of Ethics, Farah et al 2012: Diagnostic Brain Imaging in Psychiatry: Current Uses and Future Prospects

In this article we review the current status of brain imaging for psychiatric diagnosis. Among the questions to be addressed are: why has diagnostic neuroimaging not yet found a place in psychiatric practice?....

 

Structural and functional studies reveal a high degree of variability within groups of healthy and ill subjects, often with considerable overlap between the distributions of the two groups [3]. In the language of diagnostic tests, imaging studies are generally not highly sensitive to the difference between illness and health....

 

While some physicians insist that they are able to use brain imaging now for psychiatric diagnosis, there is currently no reliable evidence supporting this view. On the contrary, there are many reasons to doubt that imaging will play a role in psychiatric diagnosis in the near future. As argued here, much psychiatric imaging research remains to be done to achieve sensitivity, specificity, and standardization of imaging protocols.

 

In addition, the nature of current psychiatric diagnosis may not even correspond to the categories of brain dysfunction that imaging reveals. Finally, the practical value of maintaining continuity in diagnostic classifications requires a cautious and incremental approach to redrawing diagnostic classifications on the basis of imaging research.

Am J Psychiatry. 2010 May;167(5):598.

Scientifically unfounded claims in diagnosing and treating patients.

Adinoff B, Devous M.

Dr. Amen claims that numerous psychiatric illnesses can be diagnosed and treatments prescribed based on resting single photon emission computerized tomography (SPECT) images. Dr. Leuchter correctly points out the absence of empirical data to support the claims of Dr. Amen. Several years ago, following conversations with Dr. Amen on how to address such concerns, the Brain Imaging Council of the Society of Nuclear Medicine offered Dr. Amen the opportunity to submit his analyses of a blinded set of SPECT scans (to have been prepared by the Brain Imaging Council) to determine how effective his technique is at correctly diagnosing subjects. Although this proposed study could have provided support for his approach, the offer was declined. Nevertheless, for more than two decades, Dr. Amen has persisted in using scientifically unfounded claims to diagnose and treat patients (over 45,000 by his own count).

American Journal of Psychiatry, Adinoff B, Devous M., 2010: Response to Amen Letter

As noted in our letter as well as in the book review by Leuchter (1), there is presently no evidence to support neuroimaging techniques to aid, substantiate, or otherwise illuminate the diagnosis or treatment of psychiatric disorders. The references offered by Dr. Amen do not suggest otherwise. Camargo (2) notes that "Brain SPECT in psychiatric disorders is still investigational. Despite considerable research interest in this area, specific patterns of the various diseases have not been definitely recognized." Although Carmago goes on to state that "perfusional and receptor imaging findings may be used as an additional diagnostic tool to guide clinicians searching for a definite diagnosis," no validated examples of this approach were provided. Brockman et al. also did not advocate the use of SPECT in clinical practice. In fact, Brockman et al. (3) specifically noted that the use of SPECT in predicting treatment response "is beyond the sensitivity of this method."

NIMH, Thomas Insel, 2010: Brain Scans – Not Quite Ready for Prime Time

 

Salon.com, 2008: Brain scam: Why is PBS airing Dr. Daniel Amen's self-produced infomercial for the prevention of Alzheimer's disease?

At the core of Amen’s crusade — both in print and on TV — is a type of functional brain imaging known as SPECT (single photon emission computed tomography), a radioisotope-enhanced CAT scan that measures blood flow in certain regions of the brain. Amen relies heavily on SPECT to make an early diagnosis of Alzheimer’s so that it can be prevented. But medical science does not support his view.

 

“SPECT scans are not sufficiently sensitive or specific to be useful in the diagnosis of A.D.,” neurologist Michael Greicius , who runs the Stanford University memory clinic, and has a special interest in the use of functional brain imaging in the diagnosis of A.D., tells me. “The PBS airing of Amen’s program provides a stamp of scientific validity to work which has no scientific validity.”

Carlat Psychiatry Blog, 2008: More on SPECT scans and Daniel Amen

 

sciencebasedmedicine.org, Hall, 2008: SPECT Scans at the Amen Clinic – A New Phrenology?

 

Quackwatch, Hall, 2007: A Skeptical View of SPECT Scans and Dr. Daniel Amen

 

 

Even the more sensitive fMRI scans show nothing useful for diagnosis:

And lastly No recommendations for commercial programs to assist withdrawal

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to comment
Share on other sites

Hi Sunny. I'm sorry you're in this predicament.

 

What type of doctor ordered the SPECT? What was the indication - looking FOR something or looking to rule out something?

Last, what did they use as a baseline for comparison?

 

Sorry for all the questions! Just trying to clarify.

What symptoms led to the order for SPECT?

 

Will the doctors interpreting the SPECT help you get temporary disability? Most doctors know extremely little about what antidpressants do TO the brain and fewer know anything about withdrawal or the mechanisms involved. Their response is not surprising.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

Link to comment
Share on other sites

Alto,

 

I was not using the SPECT scan to evaluate for psychiatric illness, but rather to evaluate for brain injury. The following is what my scan report says:

 

"Several regions of abnormally decreased perfusion as described above in detail. In this young patient, the differential diagnoses include traumatic brain injury, toxic brain injury, and viral encephalopathy. In the absence of a history of trauma, traumatic brain injury is an unlikely diagnosis. The above findings might be related to toxic brain injury. However, direct link to any specific toxin could not be established with this scan. Review of the relevant literature reveals no persistent toxicity associated with sertraline (Zoloft). Alternatively, a chronic viral or bacterial (Lyme's disease) can yield a similar diffuse pattern of hypoperfusion."

 

So basically the findings are that I may have a "toxic brain injury" from a chemical or chronic viral or bacterial infection. But I have never had a chronic virus/bacteria that I know of...

Zoloft 50mg for 7.5 years

Developed akathisia while on the drug Dec. 2009

Severe withdrawal/damage

Drug-free since May 5, 2011

Link to comment
Share on other sites

Hi Sunny. I'm sorry you're in this predicament.

 

What type of doctor ordered the SPECT? What was the indication - looking FOR something or looking to rule out something?

Last, what did they use as a baseline for comparison?

 

Sorry for all the questions! Just trying to clarify.

 

Will the doctors interpreting the SPECT help you get temporary disability? Most doctors know extremely little about what antidpressants do TO the brain and fewer know anything about withdrawal or the mechanisms involved. Their response is not surprising.

 

EDIT: I posted and then saw that Altostrata addressed your question.

 

Barb,

 

I was referred for the SPECT scan by my primary care physician to look for brain injury, specifically toxic brain injury. Toxic brain injury is similar to traumatic brain injury, except that the injury is caused by a toxin instead of an outside blunt force. For comparison, they use brain scan images from thousands of other patients who have had brain injuries. Areas of decreased blood flow = injury.

 

The doctors who did the scan haven't been helpful with disability. They just want to prescribe more drugs. :( And yes, no one knows what antidepressants do to the brain, but maybe now we are starting to learn??

Zoloft 50mg for 7.5 years

Developed akathisia while on the drug Dec. 2009

Severe withdrawal/damage

Drug-free since May 5, 2011

Link to comment
Share on other sites

  • Administrator

I'm sorry, Sunny, I believe the SPECT scans you got and the doctors who ordered them and administered them are in the Amen category, as is their explanation.

 

The report is a bunch of jargon that doesn't mean anything.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to comment
Share on other sites

Hi Alto,

 

Well despite what the SPECT scan does or does not show, it doesn't change the fact that I am still suffering from severe withdrawal symptoms. The worst would have to be the anxiety, as it is almost debilitating at times.

 

I don't know what to do because currently I am living with my mother, who is supporting me financially. But she just told me that she won't let me continue to live with her unless I am "on something for my anxiety and mood." I truly believe that there is no cure for withdrawal syndrome, except time, and I wholeheartedly agree with you that no drugs, herbs, or supplements are going to cure me. But try explaining this to my mom...who herself is on Prozac and buys into our drug obsessed medical system wholeheartedly.

 

I have tried to elicit the help of my parents, to no avail. I have tried, numerous times, to explain to them about withdrawal. I have even tried to show them this website, and NO ONE BELIEVES ME. They say "you can't believe what you read on the internet."

 

So what am I to do? I can't afford to support myself financially right now, and I highly doubt I would qualify for disability, or even find a doctor willing to help me. But if I want to continue to live with my mom, I have to take drugs, which will only cause more harm.

 

Any ideas??

Zoloft 50mg for 7.5 years

Developed akathisia while on the drug Dec. 2009

Severe withdrawal/damage

Drug-free since May 5, 2011

Link to comment
Share on other sites

Hi sunny,

 

Been reading this thread. Have you ever been tested for Lyme?

 

Also, I am sure you are completely suffering and I'm sorry for that. Have you considered reinstateing on a tiny dose until you stabalize so you can get a job and get outta your mothers house???

 

Hugs

Everything was ok. And then it wasn't.

 

Med History

11/2009- 50 mg Zoloft (1st ad ever) in combo w/.50 xanax for 2 weeks then use xanax as needed (1st benzo ever)

9 days on Zoloft, I was awake for 9 days straight C/T Zoloft

11/2009- trazadone to sleep for 2 weeks c/t Trazadone

12/2009 start 10 mg Lexapro w/ Xanax as needed

5/2010-3 week taper off lexapro

9/2010? back to Lexapro 10 mg after 5 or 6 weeks c/t leapro

12/2010-10mg paxil

5/2011-6 week paxil taper

8/2011 5mg lexapro

last lexapro pill January 7 2012

all this as per doc orders Thanks Doc!

Link to comment
Share on other sites

Hi sunny,

 

Been reading this thread. Have you ever been tested for Lyme?

 

Also, I am sure you are completely suffering and I'm sorry for that. Have you considered reinstateing on a tiny dose until you stabalize so you can get a job and get outta your mothers house???

 

Hugs

 

Ajnjj,

 

No I have never been tested for Lyme, which I should be, but I just can't stand to go to any more doctors right now.

 

I tried reinstating the Zoloft a long time ago, but had disastrous results. I got akathisia and couldn't eat or sleep for three days. :(

Zoloft 50mg for 7.5 years

Developed akathisia while on the drug Dec. 2009

Severe withdrawal/damage

Drug-free since May 5, 2011

Link to comment
Share on other sites

  • Moderator Emeritus

I tried reinstating the Zoloft a long time ago, but had disastrous results. I got akathisia and couldn't eat or sleep for three days. :(

 

Hi Sunny, I just found out the RLS ( arms and legs) I had is akathisia.. I don't know how anyone can tolerate this without losing their minds. Wow.. no wonder you did not try to go back on. Gosh, the crap these drugs put us thru.

Schuyler

As always, LISTEN TO YOUR BODY! A proud supporter of the 10% (or slower) rule.

 

Requip - 3/16 ZERO  Total time on 25 years.

 

Lyrica: 8/15 ZERO Total time on 7 or 8 yrs.

BENZO FREE 10/13 (started tapering 7/10)  Total time on 25 years.

 

Read my intro thread here, and check the about me section.  "No matter how cynical you get, it's almost impossible to keep up." Lily Tomlin

 

 

Link to comment
Share on other sites

 

I tried reinstating the Zoloft a long time ago, but had disastrous results. I got akathisia and couldn't eat or sleep for three days. :(

 

Hi Sunny, I just found out the RLS ( arms and legs) I had is akathisia.. I don't know how anyone can tolerate this without losing their minds. Wow.. no wonder you did not try to go back on. Gosh, the crap these drugs put us thru.

Schuyler

 

Schuyler,

 

Yes, akathisia is horrible and I wouldn't wish it upon my worst enemy.

Zoloft 50mg for 7.5 years

Developed akathisia while on the drug Dec. 2009

Severe withdrawal/damage

Drug-free since May 5, 2011

Link to comment
Share on other sites

  • 2 weeks later...

 

Hi Sunny. I'm sorry you're in this predicament.

 

What type of doctor ordered the SPECT? What was the indication - looking FOR something or looking to rule out something?

Last, what did they use as a baseline for comparison?

 

Sorry for all the questions! Just trying to clarify.

 

Will the doctors interpreting the SPECT help you get temporary disability? Most doctors know extremely little about what antidpressants do TO the brain and fewer know anything about withdrawal or the mechanisms involved. Their response is not surprising.

 

EDIT: I posted and then saw that Altostrata addressed your question.

 

Barb,

 

I was referred for the SPECT scan by my primary care physician to look for brain injury, specifically toxic brain injury. Toxic brain injury is similar to traumatic brain injury, except that the injury is caused by a toxin instead of an outside blunt force. For comparison, they use brain scan images from thousands of other patients who have had brain injuries. Areas of decreased blood flow = injury.

 

The doctors who did the scan haven't been helpful with disability. They just want to prescribe more drugs. :( And yes, no one knows what antidepressants do to the brain, but maybe now we are starting to learn??

 

 

I am curious did your insurance cover the cost of the spect?

Paxil 10mg 2004-2011

7.5mg 4months

5mg. 4months

2.5mg.8 months no wd issues

Dropped pax 4-10-12

5-9-12 started prozac to alleviate symptoms (no relief)

5-22-12 reinstated paxil 2.5mg

5-28-12 5mg pax (couldn't tolerate sides)

6-22-12 Pax 2.5

6-30-12 Pax O

Cerebrolysin to help with wd at 29 months. Horrible decision much worse.

Still suffering sever Brain fog, Confusion, slow thinking,And just feeling sick and weird (hard to explain),facial twitching, weakness, shaking and jerking

Link to comment
Share on other sites

  • 3 weeks later...
  • Administrator

http://neuroskeptic.blogspot.com/2012/07/brain-scanning-or-vein-scanning.html

 

Neuroskeptic Friday, 20 July 2012

Brain Scanning... Or Vein Scanning?

Many fMRI studies of brain activity could be biased by the effect of large blood vessels, according to an interesting new report: Origins of intersubject variability of BOLD and arterial spin labeling fMRI.

 

fMRI measures BOLD, the Blood Oxygenation Level Dependent response. As the name says, BOLD is when a bit of the brain becomes more active, it uses more oxygen, and the oxygenation level of the blood in the area drops - although it then increases to compensate, and it's the increase that most fMRI picks up.

 

There's a catch though: blood flows. Specifically, it flows from arteries, into tissues - the brain, in this case - and then into veins. Blood leaving the brain tends to end up in the larger veins and, being large, these exert a large effect on BOLD - even though they're some distance from the true site of neural activation.

 

So, the worry is that BOLD blobs may be shifted towards the nearest large vein, reducing the accuracy of fMRI. It's a well-recognized issue, but it's not clear just how serious it is... or what we can do about it.

 

....

Overall, it's an important paper and a reminder that, although neuroscientists sometimes treat the brain as separate from the rest of the body, it's not.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to comment
Share on other sites

×
×
  • Create New...

Important Information

Terms of Use Privacy Policy