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| | From:  Frankie7179 (Original Message) | Sent: 7/7/2008 2:17 PM |
first i wanted to thank deek and of course tammy and sam i am, for keeping the site up and running as i have been very sick, i been having status epileptis, which means seizure after seizure, i have bruised my body and got stiches in my nose due to seizures, as most of you know i have a brain anyuresum and am on heavy painkillers which by the way are very addictive so now i have another problem, i went on tuesday for a cat scan with contrast to see if my anyuersum has grown, i am praying that it has not for then i will need surgery, i am on kepra, lamictal, topomax and kolonipin, as well as oxycontin and percocets for the extreme pain i am in, i also am on cymbalta for the depression, so i am so tired most of the day and in pain from the last few seizures that i have had, i am also so very depressed and the headaches i suffer from are artery induced and i sometimes have to go to the hospital for a morphine shot, i just wanted to let you all know what is going on with me and i have been checking the site but not posting yet, i just denied access to a person looking for love...lol...Anyway, i hope that you all had a fab fourth and are doing good, and remember to take your meds... |
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(((frankie))) I feel so badly for you and hope you feel better soon. I had a giggle when your wrote you had to turn away someone looking for love..you guys are great managers. Please rest up and take care of yourself. I hope everyone else is doing well also. I had a busy week and am seeing the neuro tomorrow. My little grandson turned one this past weekend. I will try and post a pic tomorrow. Lori
From: [email protected]
To: [email protected]
Subject: hello everybody
Date: Mon, 7 Jul 2008 06:17:50 -0700
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hello everybody
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| From: Frankie7179 |
first i wanted to thank deek and of course tammy and sam i am, for keeping the site up and running as i have been very sick, i been having status epileptis, which means seizure after seizure, i have bruised my body and got stiches in my nose due to seizures, as most of you know i have a brain anyuresum and am on heavy painkillers which by the way are very addictive so now i have another problem, i went on tuesday for a cat scan with contrast to see if my anyuersum has grown, i am praying that it has not for then i will need surgery, i am on kepra, lamictal, topomax and kolonipin, as well as oxycontin and percocets for the extreme pain i am in, i also am on cymbalta for the depression, so i am so tired most of the day and in pain from the last few seizures that i have had, i am also so very depressed and the headaches i suffer from are artery induced and i sometimes have to go to the hospital for a morphine shot, i just wanted to let you all know what is going on with me and i have been checking the site but not posting yet, i just denied access to a person looking for love...lol...Anyway, i hope that you all had a fab fourth and are doing good, and remember to take your meds... | |
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Reply
| | | From: vickie | Sent: 7/9/2008 2:02 PM |
Frankie I hope the surgery can give you some relief. I now mine did. I have been through 4surgeries. but I didn't have and anyuresum like you though. Mine was caused by scartissue damage from birth. But for yrs I had the status epilepticus. (forgive me if I spelled it wrong) If you need some one to talk to give me a call some time. here is my email [email protected] I will give you my phone number if you want to talk sometime if you give me a shout. Take care.. Vickie Roy |
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Hi Frankie. I hope this post find you feeling better. I have tried to attach a picture of the little man to my post and hope you all can see it. The past few months I have had more seizure activity but in all honesty, I think I am becoming more aware of the seizures now. It is not as scary for me and this group has done a wonderful job od educating me and getting me to relax. I think I have another kidney infection again and hope it is not a side effect of the blood pressure medication I am taking. My BP has been great and my dilantin level is stable. I have been able to step outside my apartment more and not be as afraid of having a seizure as before and as I am relaizing my triggers now I can take some steps to hopefully avoid a seizure. Take care everyone and I will be reading the posts tonight. Lori  |
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Lori, he is just SOOO cute!
From: [email protected]
To: [email protected]
Subject: Re: hello everybody
Date: Sun, 13 Jul 2008 19:47:55 -0700
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hello everybody
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| From: SoulWings |
Hi Frankie. I hope this post find you feeling better. I have tried to attach a picture of the little man to my post and hope you all can see it. The past few months I have had more seizure activity but in all honesty, I think I am becoming more aware of the seizures now. It is not as scary for me and this group has done a wonderful job od educating me and getting me to relax. I think I have another kidney infection again and hope it is not a side effect of the blood pressure medication I am taking. My BP has been great and my dilantin level is stable. I have been able to step outside my apartment more and not be as afraid of having a seizure as before and as I am relaizing my triggers now I can take some steps to hopefully avoid a seizure. Take care everyone and I will be reading the posts tonight. Lori | |
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I am getting to the boards very late tonight. Sorry to hear of everyones needs here. Hope you are all feeling better soon. Hope you were able to get in and see your doctor Lori or that if there wasn't and opening at least a PA could see you. Sam- reading in your message on Dom- I can say from experience that epilepsy seems to "hit" in puberty. I know for a female person that the seizures seem to happen more around when it is time for when you are due for your period or when you are having it. I have seemed to have mine always the week before or of when I am having my period since I started having my periods. Then also when I am under alot of stress in the past. Now I also read in your message that you said your folks gave him a "hoop" to use. Is this giving him a type of game to play that will allow something to hit his head like "basketball". I know that I was told in Jr. High and H.S. to not be involved in interactive sports due to the epilepsy. If this is so and you have given him something that involves any interactive sports make sure to always have an adult be watching over him at all times. Due to not being able to be involved in interactive sports in H.S. I just took swimming. If any of you have children and they are not in lessons get them started at a young age so they do not "build up" the fear of water. I was a T.A. in H.S. and the older the kids get the more fear they will build up the longer they wait. I hope this message helps you out some. I am getting to bed late. I better just shut down even though this is my only message posted tonight. Sorry. They have changed my hours to where I start a 1/2 hr. earlier now. So I have to be pickier about my bedtime.
Jana |
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Hi everyone. I am checking in...how is everyone feeling? Frankie, do you have any more results on your brain scan? I know you are worried about surgery, what other options has your neuro discussed with you? I also take a small dose of klonopin, 0.5 mg in the morning and at night..they really help with the limb twitching and of course helps me relax and get some sleep. My prayers are with you. thanks Cherokee and all for the e mails about my grandson..he is so cute! Its kind of funny because I don't always refer to him as my grandson - I call him 'Jessie's nephew'! My nickname is La La way back from when I was a kid. My brother couldn't say Lori so LaLa was easier. Little kids seem to naturally call me that and now everyone does. At my grandson's party I observed he can say 'da da, umm, and lala! Smart baby! Maybe grandma can wait?  . Sam I hope Dom is stabilizing and is feeling better. I know puberty can increase seizure activity..I can't believe he isnt a little boy anymore! I did see the doc an had another CAT scan - I have another kidney infection. Not as bad as last time but it still knocked me out for several days. My blood pressure is finally not only stable but great and I am hoping the Diovan I am taking isn't effecting my kidney function. I have to see that doc and a urologist soon. take care everyone. Lori  |
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