Guest guest Posted October 23, 2010 Report Share Posted October 23, 2010 So I was thinking, instead of fighting each other, lets work on fighting PSSD and SSRIs. I was looking to see if there might be any doctors who would be in the right place to help us. I found the following guy. Jay Cohen, psychiatrist in San Diego who wrote the following book. Over Dose, A case against the drug companies : http://www.amazon.com/Over-Dose-Against-Companies-Prescription/dp/1585421235 He is an adjunct professor at UC San Diego, where I went for undergrad. His webpage is http://www.jaycohenmd.com/index.html His email is jacohen [at] ucsd.edu Why don't we each try to find one person like this, and then each email them. Even though it is slow, if we each do this, one by one, I think eventually we can raise more awareness. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2010 Report Share Posted October 23, 2010 Here is the message I sent to Jay. I hope others will look for people like this and post their contact info here as well. If we all contact people then eventually there will be greater awareness. I know this condition is embarrassing and personal but really we should not hide from it. I am using my real name and email when contacting this guy for example. Hi Jay, I saw that you had published a book called Over Dose, A Case Against the Drug Companies, so I felt you might be an appropriate psychiatrist to contact regarding this. Plus, I am a UCSD alumni and seeing as how you are affiliated I figured it would be a good place to start. I am looking to raise awareness for a condition that I and many other people have as a result of taking SSRIs or SNRIs. For some people who have sexual side effects while on SSRIs the condition does not improve afterwards. I do not know if you have heard of this or not but I thought you should know about it. Anyhow, myself and many a large number of other people (both men and women) who have taken SSRIs (http://health.groups.yahoo.com/group/SSRIsex/) have reported that the sexual side effects of SSRIs continue after terminating the use of the drugs and overcoming their depression. This condition has been termed Post-SSRI Sexual Dysfunction. The symptoms are generally not the same as those from psychogenic causes (for example genital anesthesia, lack of morning erections in men, soft glans syndrome in men etc) . I was hoping I could raise this to the attention of open minded psychiatrists. I was also hoping to find someone interested in researching the subject further. Many people suffering from this condition find it difficult because when we talk to those in the medical community they often dismiss the condition even though there are published studies noting its existence. Here are some resources regarding the condition. http://www.ncbi.nlm.nih.gov/pubmed/18173768 http://onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2007.00630.x/pdf http://psychrights.org/Research/Digest/SSRIs/PersistentSSRISexSideEffects.pdf http://www.sexsmartfilms.com/free-videos/libido-lost/ (video by a psychiatrist discussing the condition) I don't know if this ads credibility to what I am saying or not but I studied molecular biology at UCSD and am a graduate student now at Stanford. I know that people's genetics can vary and that drug response can therefor vary quite a bit. In fact some of the people in my department are working on doing genomic analysis for the drug Warfarin to create algorithms to give healthy doses (http://www.ncbi.nlm.nih.gov/pubmed/19228618) . There is no reason why this would not be true for other drugs. Also I do not see why illegal drugs or even tobacco could be known to cause permanent sexual damage but legal prescription drugs could not, at least for a certain portion of the population. Drugs can be processed quite differently between individuals depending on which cytochrome alleles they have for example. I know for myself that this condition was definitely caused by effexor and/or zoloft as I never had any sexual problems during the height of my depression but did more or less immediately have problems after starting effexor. Please let me know if you can help us raise awareness or would like to learn more about the condition. I hope to hear back from you. - > > So I was thinking, instead of fighting each other, lets work on fighting PSSD and SSRIs. > > I was looking to see if there might be any doctors who would be in the right place to help us. I found the following guy. > > Jay Cohen, psychiatrist in San Diego who wrote the following book. Over Dose, A case against the drug companies : http://www.amazon.com/Over-Dose-Against-Companies-Prescription/dp/1585421235 > > He is an adjunct professor at UC San Diego, where I went for undergrad. > > His webpage is http://www.jaycohenmd.com/index.html > > His email is jacohen [at] ucsd.edu > > Why don't we each try to find one person like this, and then each email them. Even though it is slow, if we each do this, one by one, I think eventually we can raise more awareness. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2010 Report Share Posted October 23, 2010 try to contact massimo.biondi @ uniroma1.it and giovanniandrea.fava @ unibo.it, i already did. More feedback are better. > > So I was thinking, instead of fighting each other, lets work on fighting PSSD and SSRIs. > > I was looking to see if there might be any doctors who would be in the right place to help us. I found the following guy. > > Jay Cohen, psychiatrist in San Diego who wrote the following book. Over Dose, A case against the drug companies : http://www.amazon.com/Over-Dose-Against-Companies-Prescription/dp/1585421235 > > He is an adjunct professor at UC San Diego, where I went for undergrad. > > His webpage is http://www.jaycohenmd.com/index.html > > His email is jacohen [at] ucsd.edu > > Why don't we each try to find one person like this, and then each email them. Even though it is slow, if we each do this, one by one, I think eventually we can raise more awareness. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2010 Report Share Posted October 23, 2010 I agree. I think it will help to draw attention if researchers get mails abour PSSD from several senders. > > try to contact massimo.biondi @ uniroma1.it and giovanniandrea.fava @ unibo.it, i already did. More feedback are better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 I have already sent a message giovanniandrea.fava which included the Stuart Shipko film. I told Giovanni how interesting his research was. Kaivey > > > > So I was thinking, instead of fighting each other, lets work on fighting PSSD and SSRIs. > > > > I was looking to see if there might be any doctors who would be in the right place to help us. I found the following guy. > > > > Jay Cohen, psychiatrist in San Diego who wrote the following book. Over Dose, A case against the drug companies : http://www.amazon.com/Over-Dose-Against-Companies-Prescription/dp/1585421235 > > > > He is an adjunct professor at UC San Diego, where I went for undergrad. > > > > His webpage is http://www.jaycohenmd.com/index.html > > > > His email is jacohen [at] ucsd.edu > > > > Why don't we each try to find one person like this, and then each email them. Even though it is slow, if we each do this, one by one, I think eventually we can raise more awareness. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2010 Report Share Posted October 25, 2010 Its interesting how the other thread originally also about raising awareness " at last a response " has degraded into fighting. Does no one else want to raise awareness? Just like 2 others? > > > > > > So I was thinking, instead of fighting each other, lets work on fighting PSSD and SSRIs. > > > > > > I was looking to see if there might be any doctors who would be in the right place to help us. I found the following guy. > > > > > > Jay Cohen, psychiatrist in San Diego who wrote the following book. Over Dose, A case against the drug companies : http://www.amazon.com/Over-Dose-Against-Companies-Prescription/dp/1585421235 > > > > > > He is an adjunct professor at UC San Diego, where I went for undergrad. > > > > > > His webpage is http://www.jaycohenmd.com/index.html > > > > > > His email is jacohen [at] ucsd.edu > > > > > > Why don't we each try to find one person like this, and then each email them. Even though it is slow, if we each do this, one by one, I think eventually we can raise more awareness. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2010 Report Share Posted October 26, 2010 If anyone is interested I heard back from Dr. Jay Cohen. " Hi , Thanks for the info, and I am sorry to hear about your adverse response to an SSRI. Fortunately, i have seen very few cases of this type, but still it is a real problem when it occurs. The literature lists numerous therapies to have helped individuals: Loratidine, Wellbutrin, Periactin (cyproheptadine), Mirtazapine, trazodone, buspirone, trazodone. Do any of these work for your group's members? Dr Cohen " He believes that PSSD exists at least, but in his experience he finds it to be rare. I think this is probably true. I mean millions of people take SSRIs and there are 2000 of us on this board. Has anyone heard of Loratidine, Periactin, Mirtazapine, or trazodone. I have seen many people discussing Wellbutrin and Buspirone but I haven't seen these others. Here is my response to Dr. Cohen " Hi Dr. Cohen, Some people have tried Wellbutrin with some benefit. Often though the benefits wear off after a week or two once peoples bodies get used to the drugs. I know some have tried buspirone. I have not heard of the other ones but I'll post them to the group. I myself have not tried any of these things, just trying to eat healthy and live a healthy life style. This hasn't fixed things but when I do the opposite things seem to get worse. Anyhow, a lot of us do not know who to contact with regard to this disorder. It seems little is known about it. Do you have any suggestions? We are trying hard to get it recognized within the medical community so that someday we may be able to get some help. Thanks for responding, " If anyone else wants to email him I provided his contact information in the first message of this thread. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2010 Report Share Posted October 26, 2010 Hi all, So I decided to contact the author of several of the PSSD studies. His name is Antonei Csoka and he is a professor at the University of Pittsburg. His email is: csokaA [at] dom.pitt.edu . Is main area of research is the molecular biology of aging but he has also published not just the PSSD stuff but other articles on the epigenetics of pharmaceuticals. Perhaps we should all contact him and thank him for raising awareness by publishing papers on the issue and encourage him to do more research. Your email doesn't need to be as technical as mine. I am sure any encouragement would be good. We want people to continue to do research on this issue after all. Here is the email I sent him: " Dear Antonei Csoka, I wanted to contact you regarding your article: " Persistent Sexual Dysfunction after Discontinuation of Selective Serotonin Reuptake Inhibitors " . I was wondering if you have done any more research beyond the case studies and your articles concerning hypothetical link between pharmaceuticals and epigenetic changes. I am a graduate student at Stanford in genetics who also unfortunately suffers from the condition in your article (PSSD). I wanted to contact you because I feel you may be the only researcher who has actually looked into the condition. I am probably one of the few if not the only member of the online support group (yahoo group) who is also a scientist (or at least working on becoming one) so I figured in a way it should be my responsibility to try and get in contact with a researcher who may actually be doing some research on the condition. I have some understanding of epigenetics (if that is indeed the cause) and I imagine it should be possible in theory at least to reverse the condition. However at this point our understanding of epigenetics is not very deep. I do think we would benefit from gene expression studies on how gene expression is changed before and after administration of drugs including SSRIs. I wonder if perhaps GWAS would also be useful in learning more as well. We know that only a small percentage of people who take SSRIs get PSSD (exactly what percentage of people who take SSRIs suffer from PSSD. I do not know but I figure it is no more than 5%). I wonder if there would be anything to gain from doing a GWAS or genotyping study on individuals afflicted by PSSD (genotyping is less powerful but cheaper, for now at least. In my department I was told that the cost will be below $1000 for whole genome sequencing in one to two years). Perhaps there are markers that could determine whether or not someone would be likely to develop PSSD (or even if someone was likely to have sexual side effects in the first place) by such a study. I know this probably isn't an easy condition to get funding for (the NIH much prefers things like cancer, heart disease, diabetes, etc), but I think a lot could be gained from it and a lot of suffering could be prevented. One of the faculty members here at Stanford developed a computer algorithm to determine what dose of Warfarin, a blood thinner, should be given to patients based of their genotypes. Before that it was pretty much a trial and error procedure to get the right amount to people. The drug was dangerous both if it is too low or too high. Now the dose can be determined to a fair degree or precision based off of the patients genotype. Anyhow I figure something like this could be the start. One could research instead of just PSSD what alleles/markers are associated with those who have sexual dysfunction while on SSRIs and who will not have side effects. Perhaps from this research something would be gained that could help those of us who already have it. I know this is a long shot but I figured I would contact you. If nothing else I wanted to let you know that those of us with the condition appreciate that there is at least someone out there publishing on the condition. So many of us including myself have gone to a doctor for help just to be told the condition does not exist and our problems are all psychogenic. Even with my knowledge of science and understanding of why my symptoms are very unlikely to have purely a psychogenic cause I was still told that. It is frustrating, but its good to know there are some people out there who know about the condition and try to let others in the field know about it. Please let me know if there is anyone you know of who can help with the condition, or if you know of anyone who would be interested in pursuing some sort of genetic or epigenetic study on PSSD. I am sure that you could at least get some volunteers off of the SSRIsex yahoo group to participate. I also think if there is reason to publish another case study some of us would participate. Thanks, " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2010 Report Share Posted October 26, 2010 The email address I posted for Antonei Csoka was no longer correct. His current email address is Antonei [at] Csoka.us If anyone would like to contact him. Also an interesting article: http://www.ncbi.nlm.nih.gov/pubmed/19501473 This is a theoretical article, and you may not all be able to access it. Anyhow if there is interested I could get the PDF and upload it if Voran okays it. Its about epigenetics. I contacted a professor at my university concerning it. Its a long shot but perhaps I can get a study started on something like this. It should be interesting from a scientific perspective, but again its a long shot. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2010 Report Share Posted October 27, 2010 thank you , for taking these steps. I noticed something, he says: " Fortunately, i have seen very few cases of this type, but still it is a real problem when it occurs. " Do you think this means he has seen at least a couple of PSSD cases? Or is he just trying to respond in a charitable way which acknowledges PSSD and lets you know he believes what you are saying? Or, maybe he has read about PSSD elsewhere - so he's heard of it but not seen it up close. I too think it must be rare, based on the membership of this group. Other people think it is common and underreported. It's hard for me to believe that this could be happening on a mass scale, to people with internet access, who aren't immediately taking to google and finding this group. > > > If anyone is interested I heard back from Dr. Jay Cohen. > > " Hi , > > Thanks for the info, and I am sorry to hear about your adverse response to an SSRI. Fortunately, i have seen very few cases of this type, but still it is a real problem when it occurs. The literature lists numerous therapies to have helped individuals: Loratidine, Wellbutrin, Periactin (cyproheptadine), Mirtazapine, trazodone, buspirone, trazodone. Do any of these work for your group's members? > > Dr Cohen " > > > He believes that PSSD exists at least, but in his experience he finds it to be rare. I think this is probably true. I mean millions of people take SSRIs and there are 2000 of us on this board. > > Has anyone heard of Loratidine, Periactin, Mirtazapine, or trazodone. I have seen many people discussing Wellbutrin and Buspirone but I haven't seen these others. > > > > Here is my response to Dr. Cohen > > " Hi Dr. Cohen, > > Some people have tried Wellbutrin with some benefit. Often though the benefits wear off after a week or two once peoples bodies get used to the drugs. I know some have tried buspirone. I have not heard of the other ones but I'll post them to the group. I myself have not tried any of these things, just trying to eat healthy and live a healthy life style. This hasn't fixed things but when I do the opposite things seem to get worse. > > Anyhow, a lot of us do not know who to contact with regard to this disorder. It seems little is known about it. Do you have any suggestions? We are trying hard to get it recognized within the medical community so that someday we may be able to get some help. > > Thanks for responding, > > " > > If anyone else wants to email him I provided his contact information in the first message of this thread. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2010 Report Share Posted October 27, 2010 >> > If anyone is interested I heard back from Dr. Jay Cohen. > > "Hi ,> > Thanks for the info, and I am sorry to hear about your adverse response to an SSRI. Fortunately, i have seen very few cases of this type, but still it is a real problem when it occurs. The literature lists numerous therapies to have helped individuals: Loratidine, Wellbutrin, Periactin (cyproheptadine), Mirtazapine, trazodone, buspirone, trazodone. Do any of these work for your group's members?> > Dr Cohen"> ...... > asked: Has anyone heard of Loratidine, Periactin, Mirtazapine, or trazodone. I have seen many people discussing Wellbutrin and Buspirone but I haven't seen these others. Loratidine is an ACE inbitor for lowering BP. I've been taking Loratidine or one of its sisters for over a decade. I've taken Trazodone to help me sleep since the mid-90's. I've also take Wellbutrin. Not sure how long, but years. Mirtazapine is an antidepressant. No sexual side effects were listed, but "there are more" floating around somewhere the ether. Periactin is cyproheptadine: Cyproheptadine HCl is an antihistaminic and antiserotonergic agent. No sexual side effects were listed, but there are more than they did list. Also floating in the ether. I'm 2 weeks out from my last dose of Effexor. I can't tell whether I still have anorgasmia. Two of the orgasms I've had since getting off it have been normal (but keep in mind that I'm masturbating because I don't have a lover). Two were extremely bizarre ones (I posted this earlier) and they were more recent than the good ones. I have what I call brain ringing. It's like ringing in your ears but is all over your brain. It comes & goes during the day. So far I haven't become more depressed. Ann > > > > Here is my response to Dr. Cohen> > "Hi Dr. Cohen,> > Some people have tried Wellbutrin with some benefit. Often though the benefits wear off after a week or two once peoples bodies get used to the drugs. I know some have tried buspirone. I have not heard of the other ones but I'll post them to the group. I myself have not tried any of these things, just trying to eat healthy and live a healthy life style. This hasn't fixed things but when I do the opposite things seem to get worse. > > Anyhow, a lot of us do not know who to contact with regard to this disorder. It seems little is known about it. Do you have any suggestions? We are trying hard to get it recognized within the medical community so that someday we may be able to get some help. > > Thanks for responding,> > "> > If anyone else wants to email him I provided his contact information in the first message of this thread.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Where did you get the information that no more than 5% of SSRI users will suffer from PSSD? I would have thought it was a lot higher than that, especially since reports have show that up to 50% of SSRI users report sexual dysfunction problems > > Hi all, > > So I decided to contact the author of several of the PSSD studies. His name is Antonei Csoka and he is a professor at the University of Pittsburg. His email is: csokaA [at] dom.pitt.edu . Is main area of research is the molecular biology of aging but he has also published not just the PSSD stuff but other articles on the epigenetics of pharmaceuticals. > > Perhaps we should all contact him and thank him for raising awareness by publishing papers on the issue and encourage him to do more research. Your email doesn't need to be as technical as mine. I am sure any encouragement would be good. We want people to continue to do research on this issue after all. > > Here is the email I sent him: > > " Dear Antonei Csoka, > > I wanted to contact you regarding your article: " Persistent Sexual Dysfunction after Discontinuation of Selective Serotonin Reuptake Inhibitors " . > > I was wondering if you have done any more research beyond the case studies and your articles concerning hypothetical link between pharmaceuticals and epigenetic changes. > > I am a graduate student at Stanford in genetics who also unfortunately suffers from the condition in your article (PSSD). I wanted to contact you because I feel you may be the only researcher who has actually looked into the condition. I am probably one of the few if not the only member of the online support group (yahoo group) who is also a scientist (or at least working on becoming one) so I figured in a way it should be my responsibility to try and get in contact with a researcher who may actually be doing some research on the condition. > > I have some understanding of epigenetics (if that is indeed the cause) and I imagine it should be possible in theory at least to reverse the condition. However at this point our understanding of epigenetics is not very deep. I do think we would benefit from gene expression studies on how gene expression is changed before and after administration of drugs including SSRIs. I wonder if perhaps GWAS would also be useful in learning more as well. > > We know that only a small percentage of people who take SSRIs get PSSD (exactly what percentage of people who take SSRIs suffer from PSSD. I do not know but I figure it is no more than 5%). I wonder if there would be anything to gain from doing a GWAS or genotyping study on individuals afflicted by PSSD (genotyping is less powerful but cheaper, for now at least. In my department I was told that the cost will be below $1000 for whole genome sequencing in one to two years). Perhaps there are markers that could determine whether or not someone would be likely to develop PSSD (or even if someone was likely to have sexual side effects in the first place) by such a study. I know this probably isn't an easy condition to get funding for (the NIH much prefers things like cancer, heart disease, diabetes, etc), but I think a lot could be gained from it and a lot of suffering could be prevented. > > One of the faculty members here at Stanford developed a computer algorithm to determine what dose of Warfarin, a blood thinner, should be given to patients based of their genotypes. Before that it was pretty much a trial and error procedure to get the right amount to people. The drug was dangerous both if it is too low or too high. Now the dose can be determined to a fair degree or precision based off of the patients genotype. > > Anyhow I figure something like this could be the start. One could research instead of just PSSD what alleles/markers are associated with those who have sexual dysfunction while on SSRIs and who will not have side effects. Perhaps from this research something would be gained that could help those of us who already have it. I know this is a long shot but I figured I would contact you. If nothing else I wanted to let you know that those of us with the condition appreciate that there is at least someone out there publishing on the condition. So many of us including myself have gone to a doctor for help just to be told the condition does not exist and our problems are all psychogenic. Even with my knowledge of science and understanding of why my symptoms are very unlikely to have purely a psychogenic cause I was still told that. It is frustrating, but its good to know there are some people out there who know about the condition and try to let others in the field know about it. > > Please let me know if there is anyone you know of who can help with the condition, or if you know of anyone who would be interested in pursuing some sort of genetic or epigenetic study on PSSD. I am sure that you could at least get some volunteers off of the SSRIsex yahoo group to participate. I also think if there is reason to publish another case study some of us would participate. > > Thanks, > > " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Interesting... All Dr Cohen's suggestedtreatments are pharmaceuticals. Trade one side effect risk for another. > > > > > > If anyone is interested I heard back from Dr. Jay Cohen. > > > > " Hi , > > > > Thanks for the info, and I am sorry to hear about your adverse > response to an SSRI. Fortunately, i have seen very few cases of this > type, but still it is a real problem when it occurs. The literature > lists numerous therapies to have helped individuals: Loratidine, > Wellbutrin, Periactin (cyproheptadine), Mirtazapine, trazodone, > buspirone, trazodone. Do any of these work for your group's members? > > > > Dr Cohen " > > > ...... > > > > asked: Has anyone heard of Loratidine, Periactin, Mirtazapine, > or trazodone. I have seen many people discussing Wellbutrin and > Buspirone but I haven't seen these others. > > Loratidine is an ACE inbitor for lowering BP. I've been taking > Loratidine or one of its sisters for over a decade. > > I've taken Trazodone to help me sleep since the mid-90's. > > I've also take Wellbutrin. Not sure how long, but years. > > Mirtazapine is an antidepressant. No sexual side effects were listed, > but " there are more " floating around somewhere the ether. > > Periactin is cyproheptadine: Cyproheptadine HCl is an antihistaminic > and antiserotonergic agent. No sexual side effects were listed, but > there are more than they did list. Also floating in the ether. > > I'm 2 weeks out from my last dose of Effexor. I can't tell whether I > still have anorgasmia. Two of the orgasms I've had since getting off it > have been normal (but keep in mind that I'm masturbating because I don't > have a lover). Two were extremely bizarre ones (I posted this earlier) > and they were more recent than the good ones. > > I have what I call brain ringing. It's like ringing in your ears but is > all over your brain. It comes & goes during the day. > > So far I haven't become more depressed. > > Ann > > > > > > > > > > Here is my response to Dr. Cohen > > > > " Hi Dr. Cohen, > > > > Some people have tried Wellbutrin with some benefit. Often though the > benefits wear off after a week or two once peoples bodies get used to > the drugs. I know some have tried buspirone. I have not heard of the > other ones but I'll post them to the group. I myself have not tried any > of these things, just trying to eat healthy and live a healthy life > style. This hasn't fixed things but when I do the opposite things seem > to get worse. > > > > Anyhow, a lot of us do not know who to contact with regard to this > disorder. It seems little is known about it. Do you have any > suggestions? We are trying hard to get it recognized within the medical > community so that someday we may be able to get some help. > > > > Thanks for responding, > > > > " > > > > If anyone else wants to email him I provided his contact information > in the first message of this thread. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 I did occasional google searches for months before I found this group. > > > > > > If anyone is interested I heard back from Dr. Jay Cohen. > > > > " Hi , > > > > Thanks for the info, and I am sorry to hear about your adverse response to an SSRI. Fortunately, i have seen very few cases of this type, but still it is a real problem when it occurs. The literature lists numerous therapies to have helped individuals: Loratidine, Wellbutrin, Periactin (cyproheptadine), Mirtazapine, trazodone, buspirone, trazodone. Do any of these work for your group's members? > > > > Dr Cohen " > > > > > > He believes that PSSD exists at least, but in his experience he finds it to be rare. I think this is probably true. I mean millions of people take SSRIs and there are 2000 of us on this board. > > > > Has anyone heard of Loratidine, Periactin, Mirtazapine, or trazodone. I have seen many people discussing Wellbutrin and Buspirone but I haven't seen these others. > > > > > > > > Here is my response to Dr. Cohen > > > > " Hi Dr. Cohen, > > > > Some people have tried Wellbutrin with some benefit. Often though the benefits wear off after a week or two once peoples bodies get used to the drugs. I know some have tried buspirone. I have not heard of the other ones but I'll post them to the group. I myself have not tried any of these things, just trying to eat healthy and live a healthy life style. This hasn't fixed things but when I do the opposite things seem to get worse. > > > > Anyhow, a lot of us do not know who to contact with regard to this disorder. It seems little is known about it. Do you have any suggestions? We are trying hard to get it recognized within the medical community so that someday we may be able to get some help. > > > > Thanks for responding, > > > > " > > > > If anyone else wants to email him I provided his contact information in the first message of this thread. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 He could also advise you who else might be interested in PSSD. > I contacted a professor at my university concerning it. Its a long shot but perhaps I can get a study started on something like this. It should be interesting from a scientific perspective, but again its a long shot. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 According to a USA Today report (see link below) there were 27 million Americans on Antidepressants in 2005. 5% may seem like a small number but when you do the multiplication the numbers are staggering. I had PSSD for almost 2 years before I found this group... and I was looking. How many thousands, hundreds of thousands... are still out there? http://www.usatoday.com/news/health/2009-08-03-antidepressants_N.htm > >> > Hi all,> > > > So I decided to contact the author of several of the PSSD studies. His name is Antonei Csoka and he is a professor at the University of Pittsburg. His email is: csokaA [at] dom.pitt.edu . Is main area of research is the molecular biology of aging but he has also published not just the PSSD stuff but other articles on the epigenetics of pharmaceuticals. > > > > Perhaps we should all contact him and thank him for raising awareness by publishing papers on the issue and encourage him to do more research. Your email doesn't need to be as technical as mine. I am sure any encouragement would be good. We want people to continue to do research on this issue after all.> > > > Here is the email I sent him:> > > > "Dear Antonei Csoka,> > > > I wanted to contact you regarding your article: "Persistent Sexual Dysfunction after Discontinuation of Selective Serotonin Reuptake Inhibitors".> > > > I was wondering if you have done any more research beyond the case studies and your articles concerning hypothetical link between pharmaceuticals and epigenetic changes.> > > > I am a graduate student at Stanford in genetics who also unfortunately suffers from the condition in your article (PSSD). I wanted to contact you because I feel you may be the only researcher who has actually looked into the condition. I am probably one of the few if not the only member of the online support group (yahoo group) who is also a scientist (or at least working on becoming one) so I figured in a way it should be my responsibility to try and get in contact with a researcher who may actually be doing some research on the condition.> > > > I have some understanding of epigenetics (if that is indeed the cause) and I imagine it should be possible in theory at least to reverse the condition. However at this point our understanding of epigenetics is not very deep. I do think we would benefit from gene expression studies on how gene expression is changed before and after administration of drugs including SSRIs. I wonder if perhaps GWAS would also be useful in learning more as well.> > > > We know that only a small percentage of people who take SSRIs get PSSD (exactly what percentage of people who take SSRIs suffer from PSSD. I do not know but I figure it is no more than 5%). I wonder if there would be anything to gain from doing a GWAS or genotyping study on individuals afflicted by PSSD (genotyping is less powerful but cheaper, for now at least. In my department I was told that the cost will be below $1000 for whole genome sequencing in one to two years). Perhaps there are markers that could determine whether or not someone would be likely to develop PSSD (or even if someone was likely to have sexual side effects in the first place) by such a study. I know this probably isn't an easy condition to get funding for (the NIH much prefers things like cancer, heart disease, diabetes, etc), but I think a lot could be gained from it and a lot of suffering could be prevented. > > > > One of the faculty members here at Stanford developed a computer algorithm to determine what dose of Warfarin, a blood thinner, should be given to patients based of their genotypes. Before that it was pretty much a trial and error procedure to get the right amount to people. The drug was dangerous both if it is too low or too high. Now the dose can be determined to a fair degree or precision based off of the patients genotype. > > > > Anyhow I figure something like this could be the start. One could research instead of just PSSD what alleles/markers are associated with those who have sexual dysfunction while on SSRIs and who will not have side effects. Perhaps from this research something would be gained that could help those of us who already have it. I know this is a long shot but I figured I would contact you. If nothing else I wanted to let you know that those of us with the condition appreciate that there is at least someone out there publishing on the condition. So many of us including myself have gone to a doctor for help just to be told the condition does not exist and our problems are all psychogenic. Even with my knowledge of science and understanding of why my symptoms are very unlikely to have purely a psychogenic cause I was still told that. It is frustrating, but its good to know there are some people out there who know about the condition and try to let others in the field know about it.> > > > Please let me know if there is anyone you know of who can help with the condition, or if you know of anyone who would be interested in pursuing some sort of genetic or epigenetic study on PSSD. I am sure that you could at least get some volunteers off of the SSRIsex yahoo group to participate. I also think if there is reason to publish another case study some of us would participate. > > > > Thanks,> > > > "> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Reading this message board requests registration of group membership and registration of a Yahoo email account, which is visible for all members. That visibility of their Yahoo email adress could be regarded as a privacy concern. Those are three obstacles to get the PSSD message out into the world. And many SSRI users don't know the word SSRI. But they just know that they have ever used pills for feelling unhappy. And many PSSD patients probably don't realise that their problems have been caused by their SSRI or they are too depressed to seek for solutions at Google. > I too think it must be rare, based on the membership of this group. Other people think it is common and underreported. It's hard for me to believe that this could be happening on a mass scale, to people with internet access, who aren't immediately taking to google and finding this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 I am curious to know the titles an authors of that literature. > > > > > > > If anyone is interested I heard back from Dr. Jay Cohen. > > > > " Hi , > > > > Thanks for the info, and I am sorry to hear about your adverse > response to an SSRI. Fortunately, i have seen very few cases of this > type, but still it is a real problem when it occurs. The literature > lists numerous therapies to have helped individuals: Loratidine, > Wellbutrin, Periactin (cyproheptadine), Mirtazapine, trazodone, > buspirone, trazodone. Do any of these work for your group's members? > > > > Dr Cohen " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 It's possible to create an email just to register for this group, so I don't think that would be the main issue. Though we should be sensitive to privacy concerns. And I'm certain there are thousands upon thousands of people with PSSD of varying degrees who don't realize how it happened or can't find this group. Still, considering how many people take these it's still a very small number we have here. You would think that with SSRI's being on the market for over TWENTY years, with millions and millions of people taking them, around the world and with many people speaking English as a second language... there would be more people here??? I mean there's what, less than 20 active female members at the absolute most? I know a lot of people are maybe lurking, or don't post regularly - but still. Losing sexuality and emotions is a pretty big deal, where is everybody??? You would think there'd be more than twenty women on the planet who would find this group and keep up with it regularly - I just find it very odd. > > I too think it must be rare, based on the membership of this group. Other people think it is common and underreported. It's hard for me to believe that this could be happening on a mass scale, to people with internet access, who aren't immediately taking to google and finding this group. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Could the retarded ejaculation that men seek and experience from taking SSRI for their premature ejaculation problem considered a form of PSSD? In Doctor Audrey Bahricks journal article about PSSD she refers to a study done by urologists where patients with premature ejaculation problems are given SSRI to treat this--and, some of these patients have reported continued changes in their sexuality after stopping SSRI six months previous. .....................................................................................................Subject: Re: Lets all raise awarenessTo: SSRIsex Date: Friday, October 29, 2010, 11:02 PMIt's possible to create an email just to register for this group, so I don't think that would be the main issue. Though we should be sensitive to privacy concerns. And I'm certain there are thousands upon thousands of people with PSSD of varying degrees who don't realize how it happened or can't find this group. Still, considering how many people take these it's still a very small number we have here. You would think that with SSRI's being on the market for over TWENTY years, with millions and millions of people taking them, around the world and with many people speaking English as a second language... there would be more people here???I mean there's what, less than 20 active female members at the absolute most? I know a lot of people are maybe lurking, or don't post regularly - but still. Losing sexuality and emotions is a pretty big deal, where is everybody??? You would think there'd be more than twenty women on the planet who would find this group and keep up with it regularly - I just find it very odd. > > I too think it must be rare, based on the membership of this group. Other people think it is common and underreported. It's hard for me to believe that this could be happening on a mass scale, to people with internet access, who aren't immediately taking to google and finding this group.>------------------------------------This group is for support, discussion, or educational purposes only. It does not provide psychiatric or medical care. All medications and supplements should be taken under a doctor's supervision. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 Doctors world wide try hard to convince their patients that PSSD does not exist. So many PSSD patients probably end up seeking for psychological causes. I think that the education level on this message board is above average. Many PSSD patients don't find this board for whatever reasons, I think. > > It's possible to create an email just to register for this group, so I don't think that would be the main issue. Though we should be sensitive to privacy concerns. > > And I'm certain there are thousands upon thousands of people with PSSD of varying degrees who don't realize how it happened or can't find this group. > > Still, considering how many people take these it's still a very small number we have here. You would think that with SSRI's being on the market for over TWENTY years, with millions and millions of people taking them, around the world and with many people speaking English as a second language... there would be more people here??? > > I mean there's what, less than 20 active female members at the absolute most? I know a lot of people are maybe lurking, or don't post regularly - but still. Losing sexuality and emotions is a pretty big deal, where is everybody??? You would think there'd be more than twenty women on the planet who would find this group and keep up with it regularly - I just find it very odd. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 Yeah honestly I think my guess of at most 5% is probably even high. Who knows though, there probably are many people who believe there doctors that its in there head and don't search this group out. Or others whose religious views make it hard for them to discuss these things etc. > > > I too think it must be rare, based on the membership of this group. Other people think it is common and underreported. It's hard for me to believe that this could be happening on a mass scale, to people with internet access, who aren't immediately taking to google and finding this group. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 Most of the said literature is in the database on this message board. > > > > > > > > > If anyone is interested I heard back from Dr. Jay Cohen. > > > > > > " Hi , > > > > > > Thanks for the info, and I am sorry to hear about your adverse > > response to an SSRI. Fortunately, i have seen very few cases of this > > type, but still it is a real problem when it occurs. The literature > > lists numerous therapies to have helped individuals: Loratidine, > > Wellbutrin, Periactin (cyproheptadine), Mirtazapine, trazodone, > > buspirone, trazodone. Do any of these work for your group's members? > > > > > > Dr Cohen " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 I don't think many doctors take it seriously when people try to tell them about their sexual dysfunction. They may immediately assume that the person is just "mentally ill", or that his problem is psychosomatic in nature. They may just try to give him more pills. I seem to remember one person on this forum who said that he had gone to three doctors who didn't believe him. It took me over 10 yrs to find a doctor who took ME seriously! Someone also posted a video by psychiatrist, Dr. Stuart Shipko. In it he mentions studies showing that about 50% of the people taking antidepressants primarily affecting seritonin will have alterations in their sexual behavior. Then he goes on to say that, although it is less studied, there are indications that about 50% of those will have persistant sexual problems even after they discontinue the drug. (That would be about 25%.) I personally think the percentage is much higher, in that many people have great difficulty talking about sexual dysfunction to begin with, can't find anyone to believe them if they do, or may not know what caused it. Then there are some people who don't know how to use a computer (like me 4 yrs ago), or who haven't had the time (are too busy) to google a search, or don't know the terminology (like "genital anethesia", a term I learned from the fellow in the red shirt) to make an effective one. Many, like I was for some time, are probably convinced that their problems are psychological. I'm particularly concerned about CHILDREN who are put on these things, since they really don't know what they should normally be feeling when they reach puberty. Then there are the SOLDIERS who've risked their lives for us, but have immediately been put on psychiatric drugs, often with little or no empathic therapy, when they've experienced emotional overwhelm from it all. How will they handle civilian life when they come home to their spouses "chemically castrated"? I'm not sure of the best way, but I believe we must let people know about this. Kay > > >> > > Hi all,> > >> > > So I decided to contact the author of several of the PSSD studies.> His name is Antonei Csoka and he is a professor at the University of> Pittsburg. His email is: csokaA [at] dom.pitt.edu . Is main area of> research is the molecular biology of aging but he has also published not> just the PSSD stuff but other articles on the epigenetics of> pharmaceuticals.> > >> > > Perhaps we should all contact him and thank him for raising> awareness by publishing papers on the issue and encourage him to do more> research. Your email doesn't need to be as technical as mine. I am sure> any encouragement would be good. We want people to continue to do> research on this issue after all.> > >> > > Here is the email I sent him:> > >> > > "Dear Antonei Csoka,> > >> > > I wanted to contact you regarding your article: "Persistent Sexual> Dysfunction after Discontinuation of Selective Serotonin Reuptake> Inhibitors".> > >> > > I was wondering if you have done any more research beyond the case> studies and your articles concerning hypothetical link between> pharmaceuticals and epigenetic changes.> > >> > > I am a graduate student at Stanford in genetics who also> unfortunately suffers from the condition in your article (PSSD). I> wanted to contact you because I feel you may be the only researcher who> has actually looked into the condition. I am probably one of the few if> not the only member of the online support group (yahoo group) who is> also a scientist (or at least working on becoming one) so I figured in a> way it should be my responsibility to try and get in contact with a> researcher who may actually be doing some research on the condition.> > >> > > I have some understanding of epigenetics (if that is indeed the> cause) and I imagine it should be possible in theory at least to reverse> the condition. However at this point our understanding of epigenetics is> not very deep. I do think we would benefit from gene expression studies> on how gene expression is changed before and after administration of> drugs including SSRIs. I wonder if perhaps GWAS would also be useful in> learning more as well.> > >> > > We know that only a small percentage of people who take SSRIs get> PSSD (exactly what percentage of people who take SSRIs suffer from PSSD.> I do not know but I figure it is no more than 5%). I wonder if there> would be anything to gain from doing a GWAS or genotyping study on> individuals afflicted by PSSD (genotyping is less powerful but cheaper,> for now at least. In my department I was told that the cost will be> below $1000 for whole genome sequencing in one to two years). Perhaps> there are markers that could determine whether or not someone would be> likely to develop PSSD (or even if someone was likely to have sexual> side effects in the first place) by such a study. I know this probably> isn't an easy condition to get funding for (the NIH much prefers things> like cancer, heart disease, diabetes, etc), but I think a lot could be> gained from it and a lot of suffering could be prevented.> > >> > > One of the faculty members here at Stanford developed a computer> algorithm to determine what dose of Warfarin, a blood thinner, should be> given to patients based of their genotypes. Before that it was pretty> much a trial and error procedure to get the right amount to people. The> drug was dangerous both if it is too low or too high. Now the dose can> be determined to a fair degree or precision based off of the patients> genotype.> > >> > > Anyhow I figure something like this could be the start. One could> research instead of just PSSD what alleles/markers are associated with> those who have sexual dysfunction while on SSRIs and who will not have> side effects. Perhaps from this research something would be gained that> could help those of us who already have it. I know this is a long shot> but I figured I would contact you. If nothing else I wanted to let you> know that those of us with the condition appreciate that there is at> least someone out there publishing on the condition. So many of us> including myself have gone to a doctor for help just to be told the> condition does not exist and our problems are all psychogenic. Even with> my knowledge of science and understanding of why my symptoms are very> unlikely to have purely a psychogenic cause I was still told that. It is> frustrating, but its good to know there are some people out there who> know about the condition and try to let others in the field know about> it.> > >> > > Please let me know if there is anyone you know of who can help with> the condition, or if you know of anyone who would be interested in> pursuing some sort of genetic or epigenetic study on PSSD. I am sure> that you could at least get some volunteers off of the SSRIsex yahoo> group to participate. I also think if there is reason to publish another> case study some of us would participate.> > >> > > Thanks,> > >> > > "> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2010 Report Share Posted October 31, 2010 I have another theory as why the amount of known PSSD sufferers is very low. You know my first one, that after your doctor dismisses any notion that it was caused by the drugs you just go on for years baffled as to what has happened to you. Then, if you are like me me, you don't tell anyone else because it is so emabarassing. I was never part of any internet depression self help group where you might hear of it and there may be millions of people out there like me. But here's theory: what if most sufferers of PSSD still take their medication, which means that they would have no idea that their low sex drive was permanent in any way. When many of these people try to come off medication their depression usually returns but the worst of this is most likely more to do with the withdrawal rather than genuine depression returning. This withdrawal can be so devastating and painful that users will usually go back on their drugs and their doctor most likely encourage this. They then come to the conclusion that the need to take these drugs forever. Now this is problably the reason why many doctors say thay have never come across a true case of PSSD. Many people taking antidepressants for a long time are not surprised that they need to increase the dose after a while and may well consider any further numbing to be due to the increase in medication. Also, high dosages of antidepressants can cause lethargy and I have read that doctors may put some of these people on ritalin as well to give them more energy. And others have to go on lithium to control the mania that these drugs often cause. As you can see, these people would most likely consider their low sex drive to be a temporary state due to the drugs they are taking and not consider that this might be a permanent thing at all, and most likely their doctors would problably agree. Kaivey (K V) > > > > > > > > Hi all, > > > > > > > > So I decided to contact the author of several of the PSSD studies. > > His name is Antonei Csoka and he is a professor at the University of > > Pittsburg. His email is: csokaA [at] dom.pitt.edu . Is main area of > > research is the molecular biology of aging but he has also published > not > > just the PSSD stuff but other articles on the epigenetics of > > pharmaceuticals. > > > > > > > > Perhaps we should all contact him and thank him for raising > > awareness by publishing papers on the issue and encourage him to do > more > > research. Your email doesn't need to be as technical as mine. I am > sure > > any encouragement would be good. We want people to continue to do > > research on this issue after all. > > > > > > > > Here is the email I sent him: > > > > > > > > " Dear Antonei Csoka, > > > > > > > > I wanted to contact you regarding your article: " Persistent Sexual > > Dysfunction after Discontinuation of Selective Serotonin Reuptake > > Inhibitors " . > > > > > > > > I was wondering if you have done any more research beyond the case > > studies and your articles concerning hypothetical link between > > pharmaceuticals and epigenetic changes. > > > > > > > > I am a graduate student at Stanford in genetics who also > > unfortunately suffers from the condition in your article (PSSD). I > > wanted to contact you because I feel you may be the only researcher > who > > has actually looked into the condition. I am probably one of the few > if > > not the only member of the online support group (yahoo group) who is > > also a scientist (or at least working on becoming one) so I figured in > a > > way it should be my responsibility to try and get in contact with a > > researcher who may actually be doing some research on the condition. > > > > > > > > I have some understanding of epigenetics (if that is indeed the > > cause) and I imagine it should be possible in theory at least to > reverse > > the condition. However at this point our understanding of epigenetics > is > > not very deep. I do think we would benefit from gene expression > studies > > on how gene expression is changed before and after administration of > > drugs including SSRIs. I wonder if perhaps GWAS would also be useful > in > > learning more as well. > > > > > > > > We know that only a small percentage of people who take SSRIs get > > PSSD (exactly what percentage of people who take SSRIs suffer from > PSSD. > > I do not know but I figure it is no more than 5%). I wonder if there > > would be anything to gain from doing a GWAS or genotyping study on > > individuals afflicted by PSSD (genotyping is less powerful but > cheaper, > > for now at least. In my department I was told that the cost will be > > below $1000 for whole genome sequencing in one to two years). Perhaps > > there are markers that could determine whether or not someone would be > > likely to develop PSSD (or even if someone was likely to have sexual > > side effects in the first place) by such a study. I know this probably > > isn't an easy condition to get funding for (the NIH much prefers > things > > like cancer, heart disease, diabetes, etc), but I think a lot could be > > gained from it and a lot of suffering could be prevented. > > > > > > > > One of the faculty members here at Stanford developed a computer > > algorithm to determine what dose of Warfarin, a blood thinner, should > be > > given to patients based of their genotypes. Before that it was pretty > > much a trial and error procedure to get the right amount to people. > The > > drug was dangerous both if it is too low or too high. Now the dose can > > be determined to a fair degree or precision based off of the patients > > genotype. > > > > > > > > Anyhow I figure something like this could be the start. One could > > research instead of just PSSD what alleles/markers are associated with > > those who have sexual dysfunction while on SSRIs and who will not have > > side effects. Perhaps from this research something would be gained > that > > could help those of us who already have it. I know this is a long shot > > but I figured I would contact you. If nothing else I wanted to let you > > know that those of us with the condition appreciate that there is at > > least someone out there publishing on the condition. So many of us > > including myself have gone to a doctor for help just to be told the > > condition does not exist and our problems are all psychogenic. Even > with > > my knowledge of science and understanding of why my symptoms are very > > unlikely to have purely a psychogenic cause I was still told that. It > is > > frustrating, but its good to know there are some people out there who > > know about the condition and try to let others in the field know about > > it. > > > > > > > > Please let me know if there is anyone you know of who can help > with > > the condition, or if you know of anyone who would be interested in > > pursuing some sort of genetic or epigenetic study on PSSD. I am sure > > that you could at least get some volunteers off of the SSRIsex yahoo > > group to participate. I also think if there is reason to publish > another > > case study some of us would participate. > > > > > > > > Thanks, > > > > > > > > " > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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