Epileptic Cup-Users?

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Epileptic Cup-Users?

Post  MandyKrzy on Wed Oct 06, 2010 1:35 am

I just thought it would be fun to see if any other cup-users had Epilepsy like me? Epilepsy can really mess with your hormones and I had the heaviest flow since my seizures started which is one reason why I switched. Also, I take enough chemicals in my 3 medications a day, so why put more in there with a tampon! Anyway, just wondering if there's anyone else out there Smile
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Re: Epileptic Cup-Users?

Post  radianceunveiled on Wed Oct 06, 2010 3:28 pm

Hi Mandy,
Yes I have sezuires too. You are so right the harmones do trigger seizures at times. I use a cup too. I have started detoxing this month to see if that make a differnce. Last week I had about four to five spells. This week I am on my cycle. I always feel so wired like I have extra toxions or something in my body. It could be all the years of taking my medication. So I am going to start doing a cleanse for liver and colon and see if that cuts down on my seizures which seem to happen close to my cycle arriving. I don't know if it will make a difference but it is worth a try.
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Re: Epileptic Cup-Users?

Post  MandyKrzy on Thu Oct 07, 2010 12:54 pm

Yeah, I've heard from so many people that detoxing helps so I've been trying but really slowly easing into it because my diet seems to affect my seizures. I started with going organic with all of my food, hair products, etc. I felt a lot better, but I replaced a medication called Vimpat to one called Felbatol and my life is like upside down. I have always had hundreds of what my doctor calls "visual seizures" a day. I believe they are really called simple-partial seizures. I still have those, but the Grand Mals have gone away. I also have that VNS implant. I don't sleep except maybe 3 hours a day, and I'm losing weight like everyday it seems. It's crazy! Thank God for the cup because since I've been on it my periods got even more out of whack! I already had two "periods" a month but now they are both really long. Somewhere near 9 days. That would have been hell with tampons and pads... not to mention the flow is heavy! I'm 17 and I buy my own things, the parents cut me off a bit when I got my job. Normal "supplies" got too expensive. Well I'm glad that there's someone else out there like me Smile
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Re: Epileptic Cup-Users?

Post  radianceunveiled on Thu Oct 07, 2010 3:08 pm

HI Mandy,
Sounds like we have the same type/similar type of seizures? I never had the grand mal but always had what they call partial complex seizures. I kind of blank out for a few seconds and then throw up. I always have an ora before they come on. I am taking phenobartal for mine. What is a VNS implant? Is that to help with the seizures and that is causing the weight loss? Is the weight loss a side effect? What does the doctor say about the weight loss? Wow sleeping about three hours a day that sounds frustrating and I know must be difficult for you emotionally and psychically. I would have major mood swings with little sleep. I am glad you found the cup too 9 days is a long time to have a cycle plus you have two a month. The cup is for sure a eco friendly way to manage your cycle. I love mine and so wish I would have discovered it sooner but better late than never right. Smile I went vegetarian for awhile and that helped my seizures so much but I had to go back to eating meat as I was not getting enough iron and I was so tired all the time even with taking supplements, so the doctor had me go back to adding meats to my diet. Well lets keep in touch. Have a great week! I love you
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Re: Epileptic Cup-Users?

Post  MandyKrzy on Fri Oct 08, 2010 9:55 am

When you see auras do you mean like you see colors and shapes or do you get the smells and sensations? I also get the vomiting and it's horrible. I can't stand it! I have 21 types of seizures right now (that they have counted)... I never knew there were so many! A VNS is a Vagus Nerve Stimulator, and it's basically an implant in your chest area that connects to a nerve in your neck that leads to your brain. It's hard to explain but if you want to know more go here http://www.vnstherapy.com/epilepsy/patient/index.asp . It's really good for people who have not shown success with medications or are on medications with side effects that are causing them a low quality of life. It doesn't work for all people which is unfortunate, but a lot of people like it. I got mine implanted in May, so I have about 6 more months before it reaches it's full effectiveness. I guess the weight loss is from the Felbatol. My doctor said there would be loss of appetite but I didn't think it would be so bad! Is your medication working well? Do you have children? One of the reasons I got the VNS is to hopefully get off of a few of my meds so I can have healthy children because some AED medications cause harm to children in the womb. I've heard of women having healthy childbirth even on meds though.
I'm not going to be vegetarian forever, just so long that I can manage my weight. Then I'll go back to eating meats, but so far I don't eat too many things that come out of a box Smile That seems to be enough for me. I hope you are feeling well, though! Epilepsy can be a total pain in the ass (excuse my language, but it's true) we just have to be strong and pull through!
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Re: Epileptic Cup-Users?

Post  radianceunveiled on Fri Oct 08, 2010 12:24 pm

You know my auras can be strange. Sometime it could be thought, a expression of someone’s face, I use to hear voices but don't hear those any more (thank God) sometimes it is taste, or strange sensation feelings ( like a pinch, toxic feelings like I have to use the bathroom etc.) I don't think smells trigger them. I usually feel dizzy as they start to get close to hitting and I get a tingling sensation in my hands. The tingling gets on my last nerves as it can start in the morning and last for two days before my seizure happens. I feel a lot of anxiety before they come. I think because I know it is going to happen. I have been on medication for 19 years. Since 12 they said I had bulimia so I was misdiagnosis for many years until I reached the age of 23. Then they started me on Dilantin, OMG that was the worst medication I felt like a walking zombie cyclops After becoming deathly ill from Dilantin they put me on phenobartol and I have been on that every since. I have two children both healthy. I was able to nurse one of them until she was almost two. I was nervous too when I had my children as I had to keep taking the medication during the pregnancy, it was more of a risk to stop the medication than to stay on it. My son I was not able to nurse as new studies showed that women that nursed their babies taking anti-convulsants their children showed to have lower IQ's than babies nursed by mothers who didn't take medications. My neurologist says that it is not true as the medication found in breast milk is so low it is hardly any. But each time I would nurse my son it was like giving him sleeping pills as he was sleeping too much he could hardly stay awake to nurse. They found that just the small amount of phenobartal found in his system from when he was in my womb plus the little bit in my breast milk was just enough to keep him sleepy all the time so I had to stop nursing. My daughter on the other hand was able to still nurse no problem. Both my kids are smart so not sure on the IQ thing and they both are healthy, age 15 and 11. Smile So yes you can have a successful pregnancy and healthy baby even with taking seizure medication. I am feeling good this week. Hopefully I will not have another one for a while but I have been under a lot of stress with trying to complete graduate school and a few other stressors in my life. I just pray, try to relax and exercise helps too. How often do you have spells? And when you have them do you have more than one in the same day and week? How long do yours last? I normally have spell episodes for about two to three days when they happen. And yes the Vomiting is the worst! I hate it especially since I am in a black out state and many times don't realize that I got sick or what I was doing while it was happening. I only remember pieces. When I come back from space and see the mess on the floor then I know. There are many times when I know it is coming and I can put a trash can in front of me to catch. The most embarrassing is at work when I am in Zombie state and I am walking around with this trash can up to my face and someone comes to help me as my mind is thinking I am in a bathroom when actually I am standing in the middle of the office. But as you said we can make it we just have to remain strong. I love you I hope you start doing better and your appetite picks up and things start to level out for you. Anytime you want to talk or vent just hit me up.
Hugs I love you
Tracey
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Re: Epileptic Cup-Users?

Post  MandyKrzy on Fri Oct 08, 2010 1:14 pm

Wow, you have no idea how amazed I am right now to talk to someone who has like the same seizures as me. I have very odd seizures. I only usually talk to my Epileptologist about them because once I explained them to a psychologist and she hospitalized me! I have the auras (which my doctor calls visual seizures, but I think that might be his own little term for them) and they are so weird. Sometimes just fuzzy colors, sometimes shapes, numbers, words and pictures of maybe things I've seen in the past or earlier that day. I used to see tidbits of my myspace page when I first started having seizures, it was a bit funny but frightening. Right before I have my Grand mal seizures my auras look all swirly and basically whatever I'm thinking or hearing is projected in words as if I'm reading it out of a book. My doctor was a bit excited to hear this and he's studying me, he said it's really rare to see things like this and that it's because there is a mis-communication between the areas of my brain that control reading and writing. I have these small "visual seizures" anywhere from 15 to hundreds a day. I have greatly adapted to them so that I might stare but I am able to pick right up again and do whatever it was that I was doing. I have many other types of seizures as well. I have absence seizures where you stare, as what you described. I have seizures that affect my insides, such as my bowels and my abdominal muscles. But they will only affect those areas at once. I have some affecting only my arms. Some where I just walk around not knowing what I'm doing. I often smell and taste things before a grand mal as well, such as smelling and tasting an ammonia-like smell/taste or the taste of having a penny in my mouth along with a weird tickling sensation in the throat. After that I totally black out and don't remember anything. It gets really scary sometimes, I was always scared to die because I go through cycles where it gets really severe. At the moment I'm entering that cycle again but I'm not quite there. I am hoping the VNS and new medication is going to help me out. I really want to get off all of the meds because they really mess me up. The side effects suck so bad. One thing I hate is that as soon as I take a dose of medication I can't see or walk for about 2 or 3 hours, and I get this feeling like I'm going to explode with all the rushing thoughts. They really mess with your head too, like depression and anxiety. I was on Dilantin as well and it made me hear voices, it was so horrible. Thank the Lord I got off that stuff, I almost thought I was going schizo!
Enough of me, though! I'm glad to hear your children are well. That is always one of my biggest fears and I'm only 17 and 1/2 years old! Glad to have met you (online haha)! I have a blog at http://mandykrzywonski.blogspot.com and that's a great way to reach me Smile I'm just so happy that someone else has gone through the same thing as me. Most people get the general black-outs, but not the visual and auditory things which can scare the hell out of someone. God bless and keep in touch! <3
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Re: Epileptic Cup-Users?

Post  radianceunveiled on Sat Oct 09, 2010 1:03 am

Mandy,
I am glad we meet too! It is nice to share with someone who can relate. Smile I am going to visit your blog page. Lets keep in touch for sure. bounce
God Bless,
Tracey
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