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#1
06-29-2012, 03:15 AM
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Greetings, I'm new here.     |
| The Following User Says Thank You to CarpeDiem73 For This Useful Post: | ||
julie wishes (06-29-2012) | ||
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#4
06-29-2012, 10:02 AM
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| Hi Michael, welcome to CWE! I hope you feel free to dive on in to the CWE waters.... (Can you tell it's hot where I am? I so want a swim). Best, Nakamova |
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#6
06-29-2012, 10:34 AM
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#7
06-29-2012, 11:09 AM
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| Hello and welcome! 
__________________ "All of our challenges are challenges that other people go through. We go through these challenges so that we may show others that they can get through these challenges as well." |
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#10
06-30-2012, 02:30 PM
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| Hi Chaz, Unfortunately my seizures are not, nor have they ever really been under control regardless of the meds I've tried. I take 1000mg 2x a day of Depakote XR and 8mg of Klonopin as well as Ativan as needed. I feel drugged to the gills most of the time. I have tremors really bad lately. I still get approx. 3-4 clusters of T/C's a month. I've tried almost every anti-epileptic drug there is and I have horrible reactions that cause extreme panic attacks and even a psychosis. It's been a long hard road but I have yet to give up. Maybe it's the Marine in me, IDK. I just get up every day and keep going. I've been reading the posts here and realize I'm not alone in the reaction department and that makes me feel less alone and less crazy. Thanks for the welcome! |
| The Following User Says Thank You to CarpeDiem73 For This Useful Post: | ||
julie wishes (07-09-2012) | ||
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#11
06-30-2012, 02:55 PM
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| Welcome to CWE hope you feel right at home! mike |
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#12
07-07-2012, 03:34 AM
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| CarpeDiem, An adverse drug reaction  brought your E on, thats heavyThat’s quite a dose of Valpro, have they checked your blood levels for the med? Did they keep upping it to get u to this level? Still a lot of breakthrough for you, I am sorry to hear this. My Son also uses Valpro 1300mg per day (he approx 85kg), also takes fish oil/omega 3 (high/pure quality), Vit E, Vit D, Vit B complex. Wanted him to take magnesium but he won’t (for now) so make sure his diet is high in magnesium... he is also in bio-feedback (brain training) and therapy and I can say these are all helping him in some way, all slowly introduced after med introduction due to complaints of side affects and breakthrough seizures despite taking meds and we did not want to keep increasing the meds if at all possible. Have you considered/tried any supplements/alternatives? Have you ever had your blood levels check for mineral and Vit deficiencies? |
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#15
07-07-2012, 06:23 PM
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| Chaz1, Yes, My Valproic levels have been titrated up to the 2000mg mark because my blood levels dropped to 57 when I was on 1500mg and had many breakthru seizures and ended up in the ER three times, so I was upped and now I am at approx. 104. I have a neurologist appt. on the 12th to check my levels again and to figure out my tremors. I do take GABA and 5-HTP also fish oil. It never crossed my mind that I might have a issue with my mineral or vitamin levels. I will bring this up on my next appt. Thursday I had another breakthru T/C and slept for about 18 hours after. Do you or anyone you know sleep for so long after? When I sleep like this I don't hear my alarm clock and then I end up missing a dose of meds and it starts a downward cycle. I don't take Vit D anymore as it was linked to the 8 kindey stones I had four months ago as per my PCP. I appreciate your questions and really have found some great knowledge here at CWE. I thought I was alone in so many ways and now I feel like I have it pretty easy compaired to the stories I hear on this site. I guess we all are effected differently. |
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#16
07-07-2012, 06:45 PM
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| Greeting  On my last visit to the ER due to another T/C my levels showed that my Potassium levels were low,but they had a hard time finding a vain,so i drank a potassium cocktail yuk.. |
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#17
07-07-2012, 08:29 PM
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| Originally Posted by CarpeDiem73  :
So glad I found CWE, so much information and so ready to help. I don't feel alone anymore. Now I know that what I'm feeling is directly related to my epilepsy and my meds. I'm glad you joined, I know you will enjoy it here. |
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#18
07-08-2012, 01:38 AM
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| hi my name is Emily. I've had pedi mal seizures since 2nd grade finally grew out of those by puberty. and then had my first gran mal seizure a month into starting puberty. * does anyone have the problem that they tend to have pre - gran mal seizures to indicate them that within the next day or so their about to start their cycle? |
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#19
07-08-2012, 10:55 AM
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| CarpeDiem (bit long  )Glad to hear you will see your neurologist soon. I hope he/she is open to doing a full blood analysis for you...never know what it will show… Tremors are a well known side affect of Valpro and one your doc certainly needs to address. Last check my Son blood levels were at 70, believe 120 is the max and u are not far off that. My Son headed to Australia last year, we talked to his neurologist about the best way to take his meds due to the major time difference and long flights etc...He said because the Valpro (Depakine XR) he is taking (think yours is same but check with your doc) is a time release med he could take the full dose in one go once a day so as to make sure not to forget it and keep his levels up. Now he takes his meds 3 times a day, 500 mornings, 500 dinner and 300 before bed, the bed time one stopped his nighttime jerking. Maybe you could talk to your neurologist because maybe u could take the full dose after a T/C and not have to worry about how long you need to sleep afterwards. My Son does not sleep for as long as you do after a T/C, but sleep he sure does...I am the carer and having seen many a T/C it’s easy to understand why the body would cry for rest as they are tough on the WHOLE mind and body..Each body is unique and if that’s what your body needs to recover then it is so. My Son is in therapy, having /living with E and seizures and taking heavy meds is hard on the body, mind, soul, therapy gives him a 3rd party to unleash his frustrations. If there is any chance and you are open, I highly recommend therapy and it’s not uncommon for those with E to see a therapist. Also, my Son is in bio-feedback = brain training. In his EEG they seen area of the brain that just locked in hyper mode and they are training this down, its working before my very eyes. Has helped him stop fidgeting (and I tell you, he could not sit still for a second and now can sit peacefully) and he says its making his brain sharp and helps combat the med head feeling. So like you, we are not giving up and will keep looking for alternatives to or in conjunction with meds in the hope for seizure control. You are sure not alone…..we learn from and support each other here at CWE and I cannot begin to say the wealth of hope and understanding I have found here…. Keep sharing please… |
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#20
07-08-2012, 11:04 AM
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| ladybug, hello. If you are seeing a higher increase around your cycle suggest you research Catamenial epilepsy (lots of info and the wonderful ladies at CWE can provide you guidance/info) and talk to your neurologist about this and keep a diary and record every single potential seizure activity...it will help you explain yourself to the docs and show patterns. http://en.wikipedia.org/wiki/Catamenial_epilepsy Ladies only...catamenial question Warm welcome to CWE |
Welcome Michael! 
