Men With Epilepsy

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Zoe

Zoe

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Hello,
I've not posted here for a while. This year marks 13 years seizure-free without drugs for me.

I am writing an article about men with epilepys, issues that are of major concern for them. I'm finding a lot about sexuality, how AEDs may affect it, yet am turning up almost nothing on support groups for men with epilepsy. Does anyone of know of any such online groups for men? Are any of the men here interested in discussing some of the issues facing men who have seizure disorders? Thanks!
 
Zoe said:
Hello,
I've not posted here for a while. This year marks 13 years seizure-free without drugs for me.
Click to expand...

Awesome! Great to see you around Zoe. Fantastic milestone you achieved.

:woot:

Zoe said:
... support groups for men with epilepsy. Does anyone of know of any such online groups for men? ...
Click to expand...

I'm not aware of any specific for men.
 
Bernard said:
Awesome! Great to see you around Zoe. Fantastic milestone you achieved.

:woot:



I'm not aware of any specific for men.
Click to expand...

Hi Bernard,
I'm surprised not to see any support groups for men. Maybe someone will want to start one here at some point. I hope you and Stacey and the kids are all doing fine. If I find any online groups for men I will post them here.
Cheers,
 
Men's blog

Zoe,
I would enjoy chatting with other men regarding their epilepsy experiences. I have recently recocoginized I have been experiencing Temporal lobe and Simple Partial seizures for several years, thanks mainly to CWE. I think I have had 3 Complex Partial seizures in the last 2 1/2 years. The latest, 2 weeks ago. I started taking 100MG ZONISAMIDE, a Generic for ZONEGRAN. Since 2 weeks ago, I now take 200MG. Since taking my meds 2 1/2 yrs ago, my selfestiem is low, my sex drive is rock bottom and my energy, as a whole, is down quite a bit. I have had a sleep issue the last several weeks, which may have caused my latest seizure. I am now trying to keep a journal. All these seizures are related to scare tissue from a motorcycly accident, without a helmet, back in 1980. I had a scull fracture and was not expected to live. I look forward to chats on CWE and learning more about epilepsy and seizures.
:twocents:
 
Hello "Paint,"

I posted the links below in this discussion:
http://www.coping-with-epilepsy.com/forums/f23/meds-libido-13230/

http://epilepsy-ms.org/living-with-e...with-epilepsy/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2685882/

http://professionals.epilepsy.com/wi...on=specpop_men

You may want to check them out and the discussion too. Seizures can affect your hormone functions and so can anticonvulsants. So you may want to check with your physician, pharmacist and maybe an endocrinologist to find out what's going on with you.
I had uncontrollable seizures for years thought to be from scarring on my brain and brain damage. This was from several strokes due to a blood vessel disease of the brain (AVM), two brain surgeries which included removing my right temporal lobe, hippocampus and amygdala, a portion of my prefrontal lobe, and damage from spinal meningitis. The second brain surgery was to try and control the seizures and it failed. When evaluated in 1996 for a possible third surgery the specialist found there was more scar tissue on my brain than could ever be removed and just left it at that; no drugs worked and surgery was not an option.
I used behavior modification, diet, neurofeedback and other strategies and brought my seizures under control in 1998 and remain seizure free.
Obviously "scar tissue" alone does not explain why we have seizures, else I would still be having three or more uncontrollable seizures a day.
I am in the middle of researching medical reports for some articles on men with epilepsy, why I got those links. I was surprised to find there is almost nothing out there specifically for men with epilepsy, even though drugs and seizures can affect a man's libido, sperm, ability to reproduce, and emotional states (which in turn can be mistaken for psych symptoms).
There was a group for men with epilepsy on Yahoo, but it hasn't been active for a couple of years.
This link is to a men's group in Ohio, but it isn't online.
http://old.epilepsyfoundation.org/local/westernohio/groups.cfm

Why not write them and see if you can find online support there. Having been on CWE (thouhh not lately active) for some years, I think if you start posting on the your issues you will make some good connections and find lots of support.

Maybe you could start a group here on this topic--I'm not a guy, so I wouldn't be in it.
As I get further along in my article, can I ask you some questions about your seizures related to men's issues?
 
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Hi Zoe,
I am a 63 year old man with a very similar health status as you. I was born with an avm on the left side of my brain. I didn't realize I was having seizures until I was approx 30 years old. They surgically removed my avm in 1984. I caught spinal meningitis from a brain abscess in my left frontal lobe due to this operation. I had a 2nd surgery done to remove the infected bone flap in my left frontal lobe also in 1984. In 1985 I had a left fronto-temporal cranioplasty to replace the bone flap. I fully concur with you that a combination of a physician, pharmacist and an endocrinologist are necessary. For me medication, regimented sleep & diet have helped me live my life without the fear of nocturnal seizures that was born within me. I occasionally will have a small seizure in my sleep wich is accompanied by 30 seconds of vertigo. One very important thing that I have learned is to understand the effects that certain food intake have on my brain. Everyone is different, we all have specific keys to control our seizures, but for me eliminating msg, lactose & activating an excitotoxin free diet have helped me gain almost complete control of my seizures. ZOE, if you get a chance please PM me Maybe we can set up a google+ circle for people who are living through what we both have. If you contact me on email I will send you my cell # & we can discuss further. If not, we can continue contact within this wonderful site. I live in Massachusetts & I am a former member of the board of directors of the Epilepsy Foundation of Ma, Ri, Me & Vt. - John Sturgis
 
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Hello Sturg,
Wow, what are the odds either of us would exist, much less ever, meet up?
Why not keep an open thread here for those who went through surgery, and\or AVMs? I'm open to a circle as you mentioned and am sending you a PM. Are you interested in braintorming (pun intended) about the nocturnal seizures and the meds?
With the AVM, I have to ask, what about your arteries? The main artery to my right hemisphere ruptured during the first surgery from the point where it meets the carotid, so there was no hope of inserting a shunt. It remains, 100% occluded. That was in 1982. The surgeons cauterized it. I came through the anesthesia and heard the surgeons yelling, "clip that artery, I think we lost her." I have still vivid memory of them yelling and having a near death experience before going into an 8 day coma. Found out later the surgeons told my mom that I would not survive or wake up.
Because of the way they had to clip the main artery, all I heard for the first four years is that I couldn't possibly live more than another month or two because that artery was going to blow. Ironically, some years back a study at Henry Ford Hospital on AVMs showed about 1% of the population is thought to have one, and 1% of this group ends up with total occulsin of a middle cerebral artery. Maybe one of those will wander into the discussion. I'm off to send you a PM. Thanks for writing.
p.s. I'll be 60 next week and I'm still "terminal" (LOL)
 
Zoe,
Thanks for your post and the web site links. I have checked out the links you included and they did provide some interesting information. I sent emails to some of those groups and contacts asking about any additional information regarding Men's Support groups in Mississippi. I hope to get some replies soon. I will post any information that may seem to be support that goal.
 
Good News, Paint!
Please do post anything you learn and whether or not you find any other support groups for men.
 
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