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monroera

I'm a TLE patient/grad student in psych, w/ paper on sexuality focusing on epilepsy impact...but all academic data is on men!!!

Hey everyone,

 So, in all the databases I have checked, most issues on the actual impact of epilepsy on a person's sex life have mainly tested men and few academic journals in neuroscience have studied women other than to report irregular periods and sometimes difficulty with the big O....

I'm a graduate student graduating soon with my master in psychology with the hopes of getting into a doctorate program in neuropsych.  I lost my dance career a few years ago when I developed epilepsy at 25 and after failed meds, I had a temporal lobectomy exactly three years prior to the week of my graduation in May (I was in ICU when my parents had flown in and brought me the acceptance letter from my local apartment.)  I also work part-time for the Epilepsy Foundation doing a lot of event planning and fundraising.  I still have auras at times, (especially times like now when I stay up all night trying to write papers!!!), and am still on Keppra, but the surgery helped immensely (after I finally accepted the idea of having it...I was pretty resistant for awhile!)

Anyhow, with all the access I have to academic journal databases, I cannot seem to find articles on the direct effect epilepsy has on women and their relationships, particularly when it comes to the physical components.  Frankly, there aren't many stories on romantic effects in general, other than the fact that most of us become very lonely and depressed.  Those articles tend to reveal the same kind of things looking up "depression and sex/romance" would.  I completely understand what that kind of weight feels like, and have talked to a couple friends, but it's crazy how there are no big trials and not even many personal accounts.  If anyone is willing to just give me any insight that I could add, I actually met with a well-known therapist in the area who works primarily with the families of those affected by epilepsy and she was telling me how sad it is that there is not a whole lot of research on women's issues with romance/sex; anything related is usually on the impact of epilepsy on pregnancy and hormones, which is extremely important, but being in in a Human Sexuality course, our final assignment was simply to write a paper on ______________ and sex, so I chose epilepsy (of course!) only to be surprised that even in the most established journals I found so little!

 It is due tomorrow, but I have a feeling I am going to continue the research post-graduation, so if anyone has anything they care to say, I would be grateful!  I completely understand if people are not comfortable here, and I'm not asking for anything graphic.  I am basically covering so many subtopics on the  impact of epilepsy on sex and romance that does cover hormones and pregnancy, as well as depression, stigmas, religion, varying cultural viewpoints (my friend with TLE told me her divorce was actually a result of her ex's family's interpretation of her condition and his failure to elaborate and clarify with them to the point she was viewed as less than human in their eyes and that took its toll), to side effects of meds, confidence, lack of desire, you name it.  But please, feel free to reveal any insight you mmight have.   I am so happy that epilepsy is finally getting a little more attention in the mass media, but we have a heck of a long way to go!

Many thanks!  RM

Comments

Re: I'm a TLE patient/grad student in psych,..data is on men!!!

Hi Monroera,

Which databases & academic journals have you been limiting searches to???

An easy & restrictive search gives:
http://www.ncbi.nlm.nih.gov/pmc/?term=epilepsy%20hyposexuality

and, of the "opposite":
http://www.ncbi.nlm.nih.gov/pmc/?term=epilepsy+hypersexuality

Hyposexuality is extremely more frequent in both males & females with epilepsy.

AEDs generally add to the frequency of hyposexuality in both sexes.

No effect associated with either the disease and/or AED to hypo- versus hyper- is less than
moderate in frequency.

Hypersexuality is fairly unusual in females, rare in males, with epilepsy.

AEDs ocassionally reduce hyposexuality (more frequent with females than males), and involving
epilepsy, a general dispute on whether the reduction is a direct response to the AEDs or an
indirect response to a reduced "effect" from the epilepsy being used with the epilepsy.

AEDs "causing" hypersexuality is very rare, much more rare than surgery to "reduce" epilepsy
causing hypersexuality (such a surgery result much more common in females than males).

Care must also be taken in distinguishing between the concept of "sexuality" and the concept of
"orgasm", as there are a moderate number of reflex epilepsies near directly "causal" with orgasm.

Most all the reflex epilepsies involving ictal (and/or peri-ictal) orgasm in the available literature during the 1980's
were case studies of females (I couldn't find any males cases in such). Most of these cases
involved "strobing of bright lights" to provoke a "reflex" ictal orgasm. Some of these cases
near totally confounded sexuality with orgasm (sometimes too the extremes of "boarding up all
the windows" in attempt to prevent the possibility of "free choice" of the mate's self-induction)

Catamenial epilepsies are mainly involving females, while church officials labeled me as a male
case of ocassional "male menses" from clustered seizures of near lunar periodicity and moderately "co-morbid" Priapistic ictal/peri-ictal
phenomena of frequent partial seizures (with added biased observations weighted by neurocutaneous signs).
I group the church's view observed by Osborne under their rant with the sometimes called inclusive "Father's Curse"*.

There is also much nonsense in medical history of both female circumcision & male circumcision & castration for treating/curing/preventing
epilepsy.

Eve LaPlante's book "Seized" (1993, 2000) mentions sexuality, "Geschwind's Syndrome" has hyposexuality as one of the
major "traits", and a more recent journal article on "ecstatic seizures" might still have working links:
"The journal article "Ecstatic epileptic seizures: a potential window on the neural basis for human self-awareness"
by Picard & Craig (Epilepsy Behav. 2009 Nov;16(3):539-46. doi: 10.1016/j.yebeh.2009.09.013),
covers some aspects, the abstract at: http://www.ncbi.nlm.nih.gov/pubmed/19836310

the quick view currently at: https://docs.google.com/viewer?a=v&q=cache:TIYZQx9F33sJ:www.epileps.ch/P...
"
A search on epilepsy-dot-com for "migraines that cause "ecstatic events"" returns a large forum
on various aspects of "Ecstatic Seizures" from epilepsy.

Being skeptical of the MMPI studies, I'm fairly skeptical of neuropsychology, such as epilepsy & "secondary schizophrenia":
"Looking for confusions beyond the ictal part, I discovered that not only was Iago one of the earliest sociopaths in literature, he was also one of the earliest practicing neuropsychiatrists in literature. The complex villain Iago describes, with his sociopathic intent, Othello's alledged post-ictal psychosis from a partial complex seizure to an inspiring degree for modern neuropsychiatrists' great delight, and expands his being a role-model further beyond just rattlesnake psychiatrists' spitting their venom. (Amazon-dot-com Look Inside, p.81) (book, p. 83). "Secondary Schizophrenia" by Sacdev and Keshavan (March 15, 2010), p.83.
http://books.google.com/books?id=44_zy35zFnIC&pg=PP1&dq=inauthor:%22Perm...

Tadzio

a few examples:
http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2006.00648.x/abst...

"These have to be differentiated from an orgasmic aura, also an uncommon feature arising for the nondominant
mesiotemporal, or more rarely parasagittal parietal regions, and possibly with female predominance [25,26]." at:
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowFulltext&Ar...

"The body to the Abstract at: http://www.ncbi.nlm.nih.gov/pubmed/14698700 remains at the sponsored site at:
http://www.scribd.com/doc/14732155/Partial-epilepsy-with-ecstatic-seizures
so it must not be objectionable, but permitted with the advertisements, beyond brief citations."

http://www.ncbi.nlm.nih.gov/pubmed/6681877/

and tons more with searches similar to:
http://www.ncbi.nlm.nih.gov/pmc/?term=reflex+epilepsy++orgasm
http://www.ncbi.nlm.nih.gov/pubmed/?term=epilepsy+orgasm
http://www.ncbi.nlm.nih.gov/pubmed/?term=epilepsy+orgasm+hand
etc.

*"My dependable once-a-month seizure clusters, which now lead to frequent secondary tonic-clonics without AEDs, got me a lot of ribbing in adolescence, and early adulthood, for it being "that time of the month" for faeries. I was wondering if the social joking with periodic seizures is very common. One theologian pronounced my occasional priapic seizures during the clusters as the Father's curse, and I didn't know what the guy was talking in a rave about, until a couple decades later when I read the book 'The Poisoned Embrace,' by Lawrence Osborne, and the written 'scientific account' (anti-Semitic myth) of the male menses, recorded by Thomas de Cantimpre in the thirteenth century. After death threats from my ex-priest then at my departure, even though 35 years ago now, some controversies that indirectly involve male epilepsy are still seeming to be very socially dangerous and subject to intense discrimination in many dimensions."