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  #1  
Old 07-13-2009, 08:36 AM
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Anyone Had This Problem After Surgery?


Can you believe it's been over a year since my surgery?! No seizures,great stuff I hear you say, but sorry to admit this, I am a moody, miserable, nasty, evil venomous woman, who takes every opportunity to bite her partner's head off, moan, and be generally obnoxious, especially for some reason, first thing in the morning, I wake up feeling so negative and down, and get better as the day goes on. I am also going through the menopause, am still unemployed, miss my dear mum, and generally pretty peed off with the whole freakin' world!!
I am still doing my bit trying to raise epilepsy awareness, and if I had some money, I would be getting my book published by now, I just sometimes cannot see any light at the end of the tunnel, but I have never regretted the surgery, I am almost 95% seizure free, which makes being stuck at home all day every day worse! I am waiting to hear from several jobs, including voluntary work, but this bloody recession continues to make life pretty miserable for a lot of folk here in the UK!!
Hope you are all ok, and like me, you are conquering your epilepsy!!

Love & Best Wishes

Elaine xxxx
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Old 07-14-2009, 10:33 AM
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Hi Elaine,

I can't believe it's been a year already! Yes it is great you're not having seizures, but the moodiness, negativity does have a tendency to take over. Plus, pile the menopause on top, it's no wonder you're going through moodiness now. It takes some time for you body to re-adjust. Just take this time to stop and smell the roses and forget about the thorns!
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Old 07-14-2009, 01:49 PM
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Hi There Cindy

Thanks for your reply, I hope I didn't sound too down, I would never try and put anyone off having surgery as it has changed things for me for the better, I just want a job, meet new people, get driving again, get back in the car, go on holiday, no big deal, just to get back to the way I was a few years ago. The hot flushes are awful, have you been there? Someone said you can go through the menopause for 10 to 15 bloody years!!! Surely not, I just get my brain sorted out, and everything else goes "tits up!" My poor partner, he gets it all in the neck from me, both barrels, I can burst into tears at the slightest thing, and then be laughing five minutes later, totally bizzare, but that's all to do not only with the menopause, but the Hippocampus in The Limbic System, I sometimes wish I could ask for it back!!??!! It's in a jar in a London University hospital. I'm sure I will adjust and things will get back to how they were, I just want to jump on a plane and go back to Egypt, or Hong Kong, there is so much I still want to see, I'lll get there, I must stay positive!

Thanks again for writing, hasn't CWE been a fabulous support eh? I really have met some smashing people through it, what a good days' work that was finding the website!

Talk again soon, I am in the middle of a hot flush now, and will go and stand in the garden. Take care!

Love

Elaine xx
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Old 07-14-2009, 02:38 PM
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Hi Elaine,

Any chance that an anti-depressant might help with the moodiness? I'm not a big fan of unnecessary meds, but some people have been helped by them. And exercise can help, especially later in the day so that it helps with sleeping.

Best,
Nakamova
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Old 07-15-2009, 06:28 AM
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Smile I Can Beat The Blues!!


Hi Nakamova

Thanks for your reply, I like you do not believe in the dreaded anti-depressants, I've sadly seen the demise of several people over the years, thanks to Prozac! God no, I'll be ok, I certainly am not very good at being miserable, and hopefully Vitamin 12, and the love of a good man will keep me sane and smiling! I just have had some pretty bad luck in the last five years, but have had some good aswell, like travelling the world, buying a beautiful house, and now, I appear to be seizure free, see, I'm a different person in the afternoon, but I spent most of the morning in tears!!

Hope you are doing well, and thanks again for replying!!

Love Elaine x
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Old 07-15-2009, 10:45 AM
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Your essential optimism/amazing strength comes through in your words. I wish you many happy afternoons AND mornings, and all good luck for the future.

Best,
Nakamova
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Old 07-15-2009, 04:11 PM
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Hey Elaine,

My Doc warned me of depression following removal of the Hippocampus, I'm OK as of now, but keeping an eye on it. He did not mention what he would do if it hit me but I'll ask when I see him next. The whole stupid hot flash thing sucks, ask your Doc if you can add an natural progesterone to your treatment, it does wonders, it also helps calm the brain and for me relieves anxiety. The job thing is a big pain in the butt. I was self employed with my husband but seizing in front of some clients and not driving cut that off. He's trying to keep the business running with out me but its tough.

Cheer up love it can only ge better, right? I'm convincing myself more than you.

Love Paula
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Old 07-22-2009, 06:33 AM
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Hi Elaine, the symptoms that you are telling me, happened to me. I have not had surgery. It was from my going through menopause. I am glad that is over in my life now. It plays havoc with your emotions.
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Old 07-29-2009, 10:49 PM
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menopause alone will do it, but to add all the other stuff on top. ugh, Give yourself time. and a good dose of kindness. My thoughts are with you. Good luck.
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Old 08-10-2009, 10:05 AM
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Time after surgery


Hi Elaine, I too had the surgery and I can honestly say it took me a good full 2 years to recovery with every day slowly getting better. The process was so gradual that I honestly didn't know the recovery was over until I had the ability to look back and see it as merely a chapter in my life. I remember saying to my husband in the car one day, "Oh wow, my recovery? It's over!!!" He smiled and said, "I know. I realized it about 6 months ago, but I didn't want to jinx it so I didn't say anything." I too was very unhappy and actually downright miserable. I think part of the problem was I was waiting to just wake up one day and feel 100% and, therefore, everyday I was setting myself up for failure because it just doesn't work that way. Again, it's so gradual that you don't even realize the progress you're truly making and it will subside. Feel better : )
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Old 08-11-2009, 05:39 AM
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Hi There All

I just read through a few of our previous chats, and realised that I haven't been on here for a while. Following on from what we were all discussing, I was at the doctor's yesterday, and as I recently had a few bad days, and have been plagued with both Simple and Complex Partials, I asked him what he suggested. I am to increase the Keppra to 1500mg am and leave it at 1000mg pm, also to continue with the Trileptal 1000mg am and 1000mg pm. I know why I've been so bad lately, it's stress, I just cannot get a job anywhere, last week, I had an interview for a Teaching Assistant position, at a local school. I didn't get the job, and they told me that 350 people applied for this one job!! It is unbelieveable in the UK at the moment, I bet a lot of those other applicants were people with degrees who are trying to get into teaching positions, and just can't find work. I must stay positive, but I just know that if I can get back "out there into the big wide world" again, I will be a lot better, and once I can be given new challenges and goals, I won't even have time to think about epilepsy, let alone have any problems with it!!

The menopause continues to haunt me, I've always been a big dreamer, but I am having the most horrendous nightmares at the moment, and when I wake up each morning, I really do have to jump out of bed, get a shower, and shake myself out of it, they sort of stay in my mind for about an hour after I'm awake, does anyone else have this problem? I have always said, that there is a definate connection with Temporal Lobe Epilepsy and dreaming, I can remember dreams from when I was a kid, and my long term memory is indescribably accurate and clear

I'm still feeling pretty emotional, but since I was last on here, I haven't been quite so miserable in the mornings, thank God!! I do mostly have my epilepsy more in the morning than the rest of the day, I was out with Mark the other night, we were having a drink in our local and the landlord came over to ask how I'd been, I just burst into tears!! God, I felt such a prat and couldn't apologise enough, his partner came over and hugged me, I just kept thinking, I must invest in waterproof mascarra for when I'm feeling a bit down! I was laughing my head off ten minutes later, and it was as though nothing had happened, wow, the female brain eh?!

While I'm here, can I ask for your opinions on something that recently happened to a mate of mine, who also has epilepsy, and has had surgery.

Bill had a very bad seizure at home, it sounds a bit like it was Status Epilepticus as he was in and out of it for some time, an ambulance was called for him, and he was taken to casualty. He was still in the seizure when he arrived there, and his mum was with him by this time, as his wife stayed home to look after their young family. His mum distinctly heard two nurses who were nearby say, "Look at the state of him, you can tell a mile away that he's putting it on and pretending to have a seizure to get our sympathy!!" can you belive that? She was raging, and made no secret that she had heard what they said, and she gave them both barrells of her anger. When he came round, he was told that there wasn't a bed for him, and he should either go home, or be taken to another hospital (he was in a pretty bad way apparantly). He has asked me to find out what you all think about this, and is his mother right to file a complaint about this treatment? How sick can you get though, we all know how disgusting it is to think someone could possibly fake a bloody seizure, I was really angry when I heard about this, and I know for a fact, that if it had been me, and my mum had heard this, she would have gone beserk, I think it is very bad, but I promised him I would ask your opinions, and what would you and your family have all done?

I look forward to hearing from you all, and I'm pleased to say that the sun is out today, so I am going to do some gardening. Love to you all, and thanks so much for just being there, it means so much to me!

God Bless

Love

Elaine xxxx
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Old 08-11-2009, 04:52 PM
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Hi Elaine,

I have had Status Epilepticus 2 times. It is one seizure after another. You are unconscious through it all. If he was awake, it is not true status, but it can easily turn into status. You cannot fake it.

The last time I was hopitalized I had the same problem about being told I was faking it. This was a neurologist who told me that. Since I was alert, I fired her. I would see about getting another neurologist while in the hospital. If not, I would go to another hospital and get better care.

I do not know about the type of nightmares you are having? Have you told your neurologist? Make sure you do. You could be having seizures in your sleep. Just a guess.

Ruth
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Old 08-11-2009, 06:34 PM
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Hey Elaine,

I don't think I've seen anyone here write about dreams and a connection to temporal epilepsy. Wait a minute maybe I have - that darn memory. I'm an extremely vivid dreamer also, have been since a kid. That was one of the things I had hoped wouldn't go away after surgery. My surgeon said it should not change a thing and sure enough it hasn't. Mine however are not scary. I discovered when I was little that if I was scared in a dream I could change it. Thats referred to as lucid dreaming. I've always thought it was quite cool. As I got older I was able to do that with good dreams also. Quite handy when Johnny Depp is in my dream. I managed to keep him around one time during a nap. I have had sad dreams that will stay with me all day. Maybe us temporal people are just more emotionally effected and connected. I also remember childhood dreams quite vividly. One odd thing, I was speaking with a dream expert recently and they said people on seizure meds quite often "stop" dreaming. Other meds can have strange effects on sleep and dreams. Maybe its the increase in your meds messin' with ya.

I'm seeing my surgeon on Thursday, I'll ask him about the bad dreams for you. He also told me it would be a full two years of healing and to expect to be emotional. So add in menopause and life sucks.

Screw the whole not working thing. I know its hard I'm really anxious to get my independence back too. But try to relax and let yourself heal.

Hope you feel better soon mate.

Love,
Paula
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Old 08-11-2009, 07:41 PM
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Hi flinnagan,

I never thought about bad dreams being associated with our medications. That could be the answer.

Ruth
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Old 08-11-2009, 08:48 PM
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She said anti depressants have a similar effect. It makes sense that anything that changes the brain could change dreams.
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Old 08-11-2009, 11:44 PM
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Hi,

Ruth
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Old 08-12-2009, 05:30 AM
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The Dreaded Epileptic Word


Originally Posted by feast View Post:
Hi flinnagan,

I never thought about bad dreams being associated with our medications. That could be the answer.

Ruth
Hi Ruth

Thanks for getting back to me, I just completed four years studying epilepsy care and management with Leeds University, and unfortunately, had a bad case of Status Epilepticus myself, so I know that the thought of faking it is totally abhorrent!!!! This makes me so bloody angry, unless you have experienced epilepsy of any degree, you can't begin to imagine how terrifying it is can you, so what right have these supposed medical people to stand there and say, "oh, he's faking it for sympathy or attention" Crazy huh?!

I was interested in your footnote "Epileptics have to support each other" I absolutely detest the word/label Epileptics, it is a word that conjures up all sorts of medieval horrors of people possessed by evil demons, thrashing about on the floor, foaming at the mouth, unfortunately, this is how the great unwashed general public see "people with epilepsy" I have never and would never use the word, it is a horrific label, and we have to stop using it to try and educate the public, that there are many types of seizure, having the condition does not make us a lesser person of low intelligence, and that we are not all likely to be on the floor every five minutes, legs akimbo, peeing all over the floor! Sorry if you disagree, but this is where the label "eppy" comes from, and the more ignorant people out there connect us all with this horrible word. I have had someone once say, "Oh, you are one of those epileptics are you?" whereupon I replied, "No actually, I'm Taurus!" Maybe it's not the same in the States, but all the people I write to over there seem to think it is, but I hate labels, no one connected to Epilepsy Action over here would ever use the word, and all the atricles I've written, and talks I've given, it is not and never will be a word in my vocabulary.

Anyway, all that aside, I hope all is well with you, and that you are having a better Summer weather wise than we are here in good old soggy Blighty!

Best Wishes

Elaine
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Old 08-12-2009, 05:41 AM
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Hi Paula

Good to hear that you are doing ok mate! You are right about us Temporal people having funny dreams, it is the part of the brain in The Limbic System that deals with emotion as you probably know, I have dreams where I astral bounce (my name for it) I sort of walk in slow motion, and bounce up really high and come back down to land again, wow, who needs red wine huh?! I quite enjoy it in a strange sort of way. I've discussed it with various people over the years but no one has ever really said there is a definate connection, but if that is where our emotions are dealt with, then I'm not really surprised, I've always had an amazing imagination too!

Mark just got home frome his two night shifts, so I have him here with me now until Sunday, so that's good, he has just brought an old car, so we will have our own transport for the first time since the end of January, what a crappy year this has been!

I'll carry on looking for a job, I don't think I'll be able to get back into the heavy plant and earthmoving equipment industry for a long time due to our recession, but to be honest, I'd consider anything legal at the moment, of course having no car restricts where I can work too, and it's only a little town where we live.

My doc suggested increasing Keppra the other day to 1500 am and 1000 pm, so that is only a 500mg increase, but I feel as though I'm going backwards with an increase in drugs if you see what I mean, I hate the thought of what all this crap is doing to my insides long term too, I wouldn't make a very good junky, as I hate taking pills!

Anyway, maybe the sun will come out later, I was in the garden until 2am watching a meteor shower last night, wow, it was beautiful, I so love anything to do with astronomy, I wonder if you can see it in the States? Take care, keep getting well, and talk again soon.

Love

Elaine xx
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Old 08-12-2009, 05:59 AM
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Hi Elaine,

If I have been using the wrong word for epilepsy, then I will change it. I do not want to offend any one. I will change my signature line.

We had the meteor shower here in CA. I fell asleep and did not get to enjoy the beautiful show. I usually watch them, when they come our way. I love astronomy!!

Ruth
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Old 08-12-2009, 12:31 PM
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Hi Ruth

Oh bless you, I didn't mean you'd offended me, it's just the idiot general public here in the UK that twist and turn that awful archaic word, and I hate it, I've had people say the most amazingly horrible things to me over the last twenty four years, and the level of ignorance towards epilepsy, never ceases to amaze me, having lost several jobs too, employers are equally stupid and ill informed!

It's great to know that you enjoy astronomy too, I sat in the garden until about 2am, I had my partner's coat on, and a glass of red wine, well, you gotta keep warm haven't you?! I saw about twenty meteors altogether, there weren't as many as I was hoping for, but there was a fair bit of light pollution around, also a large bright waning moon came up around 11pm, that spoilt the view a bit. I've got my own telescope, I wouldn't use it for a meteor shower, but it's fascinating looking at the moon with it. Ever since I was a kid, I've always had a fascination for anything like this. Let me know if you get to see any ok?

I just got an appointment to go down to London and see my surgeon next month, I've been waiting for months to hear from him, so I was pleased to finally get a call this afternoon, just hope I don't have to get stuck in the MRI scanner, I hate those things, I am so claustrophobic!! Keep in touch and let me know how things are going ok?

Love and Best Wishes

Elaine
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