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#1
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#2
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| Boy Kirk, you do have a full plate and that is something I can relate too. Chronic pain drives you crazy and that is something I too have lived with for over 3 decades. It sounds like a lot of your issues are possabily Post Traumatic Stress Disorder but you need a doctor to make that diagnosis. It may be worth your while mentioning this to him/her. The epilepsy of course will rear it's ugly head as theses events play out. I do have one thing I'd like to discuss, the Gabapentin. Now I took Neurontin for a few months but had to get off of it because that stuff just made me INSANE. Depakote did the same thing but add, suicidal thinking and excessive weight gain. On both drugs I was violent, out of control, major depressed, throwing dishes, furniture, slamming doors... you get the picture. I just wonder since you are taking Gabapentin as a pain control, if this is happening to you too. Is there a reason why you are not taking opates for the pain? I have used prescribed opates for years without ever having any sign of an addiction problem. Because I have Severe Rheumatoid Arthritis and Osteoarthtitis, I have had broken feet, torn tendons, frozen shoulders, injections of steriods in my neck, shoulders, wrists, knees, bilateral carpel tunnel surgery, tendon repairs, both knees replaced and several other unrelated surgeries. Lots of pain killers have passed my lips and have been injected into my body. I do not use them as a recreational drug, never did do any street drugs either, for that matter. But they have served me well. Coping with chronic pain is a challenge, IMO it has been more stressfull than the epilepsy, BUT epilesy took parts of my life I can never get back. Both are horrible situations to have to deal with on a daily basis. Visiting these forums and relating to others with similar issues has been a HUGE help, like my Epilepsy Support Group. As for family support, I have very little but my 2 best friends are the salt of the earth and keep me grounded. Do you have someone in your life who shares your ups and down?
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#3
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Answer to birdbomb Thanks Birdbomb I really appreciate that I now know that I'm not the only one that has had these rediculous side FX from alot of the medication I'm taking and whose is suffering from depression because of the trouble associated with my epilepsy and chronic pain in my hand. And I would like to say that it sounds great that you have 2 friends that you can share these very personal parts of your life with. Birdbomb I do have 5 friends that I consider my best friends but I only feel comfortable talking to 2 out of the 5 of them about my personal life and how epilepsy affects it, because the other 3 don't really know too much about epilepsy and how it can really affect your life. Not only that, I'm not really sure how 3 of them will response to such a complicated problem I'm dealing with in the first place. I've talked to 2 of my friends about these problems that I've been having and they are doing the best they can to comfort me. It's just that it's hard for them to give me any advice besides you know "just hang in there your doing a good job" and or "I understand". Don't take me the wrong way I'm greatful that I can even talk about my personal life to do with epilepsy with them and it's great support talking to them and that I can share this part of my life with them. It's just most of the time there listening and just trying to get to understand what I'm going through because they don't fully understand how epilepsy and the anti-epileptic drug's you take with them can actually affect your life because they don't have epilepsy. Which makes it very difficult for them to give me any advice on how to help me cope with my current problem. It's not that there not trying to understand it's just difficult for them to understand how epilepsy and my mangled hand can contribute to so much confusion, frustration, and depression deep within me. 1 of them that has just recently moved to Vancouver has been great support for me because I 1st became friends with him when I was 13 and we were playing basically on the same soccer team together until we both graduated from high school. So as we grew up together he has seen me have seizures before and has learned how to react to them in the proper way when I have a seizure in front of him. Anyways all my best friends are very kind, caring, and positive mature people it's just that I don't feel comfortable talking to all of them especially if it's a serious problem to do with my anti-epileptic drug's and epilepsy. I also can't just always go talking to them about these big problems in my life because they sure as hell have there own personal problems that they have to deal with themselves without me having to add more problems into there lives. And my parents? Well 1st of all I don't really get along with my father too well so he's out of the question. And for my mom she is actually a really good support but when it comes down to the complicated things I'm dealing with presently in my life now she's just as confused and frustrated as I am because of course like all mothers they like seeing there sons or daughters happy not the opposite. Talk to you later and take care for now! Last edited by kirk267; 01-24-2008 at 09:50 PM. |
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#4
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| Hi Kirk, I don't think you're going insane. I feel your pain just by reading your letter. I had a thread on using Neurontin (Gabapentin) as a pain med, look at the Neurontin-Hot-Flashes/Pain thread. I don't sleep at night at all right now because of the pain from radiation and hot flashes that come along with it (Only 6 treatments to go out of 28!). I would rather be up all night than have a seizure from taking meds to help me sleep or take away the pain. What I actually did to help myself out was take in an abandoned kitten, she is my best friend! I just had her fixed and now I have a place to be when I wake up every hour on the hour, she is the best thing I could have done. My kitten takes my mind off of everything and she is by my side. I feel my chest equates to how your hand feels, you have the pain and you want it to go away but whenever you try to relieve the pain; your "E" takes over and tells you there better not be another drug added to your diet? Your freedom, independence, and the good life will come back, you had a set back and everything happens for a reason. If we put one foot on the floor in the morning, we’re having a better day than others. Your thread actually prompted me to say something I have wanted to mention since I have been in this forum, I have cancer and I have epilepsy, if I could pick one over the other, I would take cancer. Those with “E” have to be stronger because the cause, cure and remedy isn’t chemo, mastectomy, and radiation and the “C” is gone. The battle with “E” will be with you forever, can you ever control it and does anyone have the cure? Kirk, have the doc take a look at the meds you’re on and the interactions, more importantly, smile, makes people wonder what you’re up to! |
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#5
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| Kirk - I am not sure I can compare Rebecca's situation to yours at all. I do know though that therapy has been the glue that has held her together. She and I have a great relationship but I am so pleased that she can share her inner fears, and challenges with someone else. She doesn't have to complain to her friends or family. I think a few of Rebecca's meds made her personality change quite a bit. One caused more seizures, another suicidal thoughts. I just don't see how a doctor can justify so many meds in your body. You mentioned seven meds... what studies have been done to prove that was safe? If he doesn't want to recommend alternative treatments... then you do it. You find out what the harm would be. |
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#6
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| Hi Kirk, I don't have much advice for you. I usually try humor when I'm down.
__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. Would you like to help support this forum? We recently had a bunch of new neurofeedback practitioners agree to offer CWE members discounts for service. See post #12 for the list of all participating practitioners. |
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#7
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| Thank you Bernard I appreciate your support ! Those Video clips you added were HILARIOUS!!!! lol!!!! (lol- laugh out loud) |
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#8
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| I can't really give you much advice all I know is I have Epilepsy, I'm in pain almost all the time, and I'm crazy, sometimes I think I'm losing my mind. I take Depekote, Dilantin, Topamax, Serquel, Ativan, Relpax, Vicodin, Lexepro, Singular, Metformin, Nexium...and I have the VNS, so in my opinion maybe I'm just toxic |
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#9
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| It sure would be my guess.... |
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#10
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| At least someone will listen to me (ha ha) |
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#11
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#12
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Thanks Brain that was very kind of you! I'm not sure really what being normal means anymore!!!!!! ![]() Just kidding!!! ![]() Take Care! |
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#13
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| Hi Kirk, You are in AMERICA man! There is no such thing as "normal". The good part is, that you are the one that can fix your problem. I'm doing neurofeedback as well as taking Dilantin and I'm not dead yet.... (laugh Bernard.... exerpt from Monty Python's The holy Grail). Everyone's epilepsy is just a little different. Mine is hormone triggered, so if I can get the hormones back on track, I will have fewer problems. Do some research and find some answers about yourself. Look at your diet too. The forum is a great place to start. I'm glad you're here. |
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#14
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#15
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| Hi kirk, It's nice to meet you too. I'm sorry to all of you that I'm not on more often. You'd think, as a "stay at home" mom I'd have more time, but I spread myself pretty thin. For example, today, I got up, yoga, shower, got the older one on the bus, and the younger one and I ate then went to the elementary school to take pictures for the papers and yearbook, of the Walk for Diabetes. Then I drove Allen to his Mother's Day out program, then came home and downloaded the pictures to edit. Then Bern and I ate lunch. After lunch, I cleaned up the kitchen .... somewhat... and sent a few emails. Then I drove to get Adam out of school just 15 minutes early and drove across town for our neurofeedback sessions. We got out of there about 4:20PM, and then drove straight back to the baseball fields where Allen (the little one) had his first mini-T-Ball practice. We picked him up and played with the boys (they were so fun), then when practice was over, I had promised Adam we would go to Hans (a Mongolian Wok... yummy) so we went. Then We came straight home and got the boys ready for bed. Good thing they were getting in trouble, I sent them straight to bed when they got home. |
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#16
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| We all love to see you on Stacy. That way we know that you are okay, and Bernard can take a breath too. I know the feeling all to well. You do have a busy life. When my third came along, she just had to go along with the flow. Just you wait until they are teens. Then you stay up late waiting for them to come through the door. It all goes much to quick. You are right where you should be. We got a call tonight from our oldest, David, 22, and he thanked us for being such great parents. It was quite touching. Last edited by RobinN; 02-09-2008 at 02:29 AM. |
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#17
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| Kirk, it's great to see that you are in a much better mood.
__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. Would you like to help support this forum? We recently had a bunch of new neurofeedback practitioners agree to offer CWE members discounts for service. See post #12 for the list of all participating practitioners. |
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