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My boyfriend has bilateral TLE and has changed over time.....

Sat, 08/14/2010 - 15:35
My boyfriend has bilateral TLE and has taken dilantin,  frisium and now only taking tegretol CR. Because I had the pleasure of knowing him prior to having Epilepsy, I can honestly say that he has changed tremondously. On dilantin and Fisium he has sever mood swings and would be short fused all of the time. He became withdrawn and also let go all intimacy in our relationship. Tegretol has calmed the anger and has decreased tension however the intimacy has worsened if that is at all possible. After a few years I finally brought it to his attention and very calmly he told me that it was him and not me. We were 2 people who were always sexually active and now we can go 1 year without any form of intimacy. I didn't understand and he didn't give any details. He said he noticed as well and that he would try. He hasn't yet and I've has to speak with him again. I honestly had to ask him if he was cheating on me and he said no. He said he couldn't explain what was happening to him. I started to look it up and saw that AED's can cause low libido and lack of sexual desire. I urged him to speak to his Neuro about it and he said that he would. He has had 2 appts since and can't seem to bring it up. What can I do because its just indicating to me that he doesn't care. I have already enough to keep inside ie my feelings of rejection, hurt, and loneliness. Why is he doing this to us? I have been nothing but understanding, caring and loving with the Epilepsy and our situation as a couple. Please if anyone has insight, please share. 

Comments

Re: My boyfriend has bilateral TLE and has changed

Submitted by 3Hours2Live on Sat, 2010-08-14 - 20:06
Hi mks5288, Hyposexuality is a frequent practical problem with epilepsy, especially with Temporal Lobe Epilepsy (TLE). With TLE, hyposexuality is in one of the major areas of the Geschwind Syndrome associated with altered sexuality. While my TLE made me sexually apathetic, the intensification of cognitive and emotional behaviour of the Geschwind Syndrome, along with priapistic seizures, fascinated a wide range of possessive Draculas across the board through my adolescence into early adult years. To myself, TLE placed me in Oberon's enchanted forest as a bashful, while arrogant, little Puck, much as in Shakespeare's "A Midsummer Night's Dream", but with my large Becker's Nevus, many people would try to pet me at first glance, and a few would use force. As with epilepsy, is my Becker's Nevus an "it", or is it a part of "me"? This is relevant because many doctors think they can cut people into pieces without damaging the whole person, though most everyone will just look away whenever the issue arises. http://www.youtube.com/watch?v=-CoBvwhPXqg A few other bits about the "forbidden knowlege" of sex and epilepsy is at http://www.epilepsy.com/blogentry/991114 This direct link often only works when a person is not signed-on here, otherwise it defaults to the homepage. My experiences with neurologists is limited to Medicaid neurologists, and minimal services with patient dumping seems to be the norm. Trying to discuss much of anything with a neurologist has been impossible, so I found a neurological journal article on AEDs that discussed concisely the issue I was then interested in: "Since the seizure manifestations (of partial seizures) are often not too disruptive, the patient may prefer incomplete control over the side effects of high doses of medication." The neurologist, who previously told me my MRI was normal (months after surgery by an emergency neurosurgeon for a frontal subdural hematoma (hence, the moniker "3Hours2Live")), he tossed the papers aside, and asked "You have a brain tumor or something?" He told me that he was going to follow standard practices, and walked out. Trying to find a different or understanding Medicaid neurologist is like asking an oak tree for advice, though the tree will be no more harmful than doing nothing. As far as a "Normal Life" with sex, epilepsy, and Medicare/Medicaid: http://www.msnbc.msn.com/id/8347776 http://www.rhrealitycheck.org/reader-diaries/2010/02/23/medicaid-should-stop-paying-viagra Tadzio

Re: My boyfriend has bilateral TLE.....

Submitted by Brick Wahl on Wed, 2010-08-18 - 22:38

This is a very common problem that I imagine most of us epileptic guys have gone through, and you know how men are, it's very difficult to tell your neurologist. Pride, etc. However, see if the doctor thinks if Lamictal might work, in addition to the tegretol. The side effects can be a little harsh the first month of so, but they dissipate, and they drug will leave him more alert and so horny he can't stand it.  It's a wonder drug..... 

 

This is a very common problem that I imagine most of us epileptic guys have gone through, and you know how men are, it's very difficult to tell your neurologist. Pride, etc. However, see if the doctor thinks if Lamictal might work, in addition to the tegretol. The side effects can be a little harsh the first month of so, but they dissipate, and they drug will leave him more alert and so horny he can't stand it.  It's a wonder drug..... 

 

Re: My boyfriend has bilateral TLE.....

Submitted by ejanesuperdog on Thu, 2010-08-19 - 22:13
Agreed.  I'm not a guy, but I struggled with TLE and intimacy for a long time, and Lamictal had the side effect of mood stabilisation (am bipolar, too) without decreasing libido.  So I second this.

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