I got epilepsy and I live alone. I had a scare last month. I mean. I had a partial seizure. I mean I dropped to my knees, and I felt very confused after, and weird.
I used to have a roomate. I mean. I have had a tough life, it's like nobody really understands me and sometimes I feel nobody has been true or fair to me, and I have had alot of backstabbers, or just ignorant people.
I am not sure. I mean. I get scared at the thought of having a seizure while living alone, and I don't see me living with anybody anytime soon. I haven't had a full seizure in a long time, but last month it gave me a real scare.
Hi there. I have had Complex Partial for more than 35 years. I also have lived alone since I moved into my first apartment 26 years ago. My last roommate was when I was in college many years ago. One thing you can do is to follow all the things you may have learned about living with epilepsy such as using the back burners on the stove, keeping the handles turned toward the back, using the microwave when possible, etc. Another thing that will be helpful is to have a close friend or relative that you know well and do trust to call you several times a week just to see how thngs are going. That does keep you in contact wth the outside world so to speak, and can allay some anxiety about having no one aware of you really are doing. You mentioned that you have not had a full seizure, but you described dropping to your knees and feeling weird etc. I would consider that a full seizure. It depends on your diagnosis and on the type of seizures you may be used to. Since there are many different types of seizures, I would consider what you described as a seizure. You may be considering Tonic clonic activity as a seizure and the weird feelings etc as not. I did not ever have Tonic Clonic seizures as in Grand Mal because that was not the type I have, but if I felt weird, that for me was a Simple Partial seizure and if I lost consciousness at all, it was Complex Partial. Do try and set up some type of call system just to have someone aware of how you are doing. Tattoo
Well the type of seizures I had at first was grandmal seizures. I first had one when I was 17, and I am now 24.
I dunno. I don't really have many people who I could consider I could call. I just had alot of bad experiences with people in the past.
but I hadn't really had a seizure that I dropped to my knees, it's not as bad as a grand mal one. but I guess it could be considered a full seizure.
Hello. I have recently found this message board, and I am very thankful that I did. This is the subject that I have tried very hard to address. I live with my daughter who is six, but other then her I am perfectly alone. I want to get my long time bf to move in with me. I have had seizures for the last three years. My question is going to be how does one feel safe in that situation? I have already had a seizure in front of her one time, and I would spare her a second... but how? I get them at work now too. I don't feel safe, as a matter of fact I am getting really depressed over this situation. I think that I feel unsafe so I cannot keep her safe. This really frightens me. For instance, how do you safegard yourself in the bath? What can you do? I am very sorry if I am upsetting anyone, but I am very worried. Can anyone please give me any suggestions?
I am not sure. What kind of job do you have? If you work in a hot work environment, it would make you be more prone to have a seizure. Do the people you work with know about your epilepsy? I am not sure if you get full seizures at work or just partial seizures ?
Yea, I mean I am kind of in the same situation as you are that I live alone. I need help and support too, but you know you just gotta do the best you can and not think about it and don't fear it.
I can understand your depression, because I always get depressed when I get them. How often do you have seizures ?? Are you taking any medication for them, and if so what kind ? I mean if your meds aren't working, maybe you could see your neurologist and see if you could go on a new med.
Anyways best of luck to you, I mean I know it frightens you and it must be frightening for your daughter to see you when you have one.
Hello there. I feel the need to tell you that a Partial seizure is not half or part of a seizure at all. It is a different type of seizure. They usually originate in one area of the brain, but can spread to encompass the entire brain. That's where the term Secondarily Generalized comes from. Please do not think that just because a seizure is classified as Partial that is is not a full seizure. They are full seizures, and they can worsen over time unless stopped. The statistics are that with Complex Partial seizures, when one med fails, there is only a 15% chance that any of the meds will ever work. Proven fact. I encourgae you both to seek the treatment of an Epilepsy Specialist, an Epileptologist, who has done the Fellowship in Epileptology and who sees nothing but epilepsy patients. General neuros will do nothing but keep feeding you pills even though he/she knows that they probably will not work either based on the type you have and the proven statistics. Complex Partial is the hardest to control with meds. There are other options available depending on the individual case, but you need the Epileptologist to tell you the options and go forward in your care. The General neuros will not offer you the options available. No one needs to spend his or her life drugged on meds when they do not work and if there are other possible options available. Please find a good Epileptologist who treats nothing but Epilepsy at a good Comprehensive Epilepsy Center. Go to the website of the Cleveland Clinic's Epilepsy Program and look for their pages called How to Find A Doctor or Facility. It gives you the questions to ask when looking for a good facility and doc. It also tells you what to look for in a facility. Read that and also the pages pertaining to the fact that not all facilities are the same. Not all are good, patient oriented facilities and are more interested in Research instead of the patient. Trust me. I have seen both. There may be a thread here called How to Find a Doc or Facility. Do read that and find a good Epileptologist. By the way, good does not necessarily mean a good reputation/center of excellence, etc. That's a commercial only. Talk to the Epilepsy Center's patients for the best recommendation. Tattoo
[This message has been edited by Tattoo (edited 08-19-2002).]
I work in a warehouse, and I take Depakote. I had an allergy to Dilantin. At work I had the type of seizure that you just kind of stare off into the same spot for a period of time. I was on break, and I must have been that way for a while because one of the girls came to get me, and she was calling my name standing right in front of me and I didn't see her standing there. I can hear her just fine, but I cannot see what is directly in front of me. Medication doesn't seem to want to work for me. I mean with the Depakote I have only had one seizure, but it doesn't react very well to my system. I was prescribed Tegratol (sp?) but the pharmacy would not give it to me becasue they said that it was in the same family as Dilantin. I cannot win either way. When I do blood work it always comes back that not enough medication is in my system to fight them off, but the meds make me so sick.
Anyways, I have always told the people that I work with that I have this condition and that I could get sick. All other times foreby this last one I have had the kind of seizure that makes you shake. God it is so horrible becuase I feel sick for the next hour.
Thank you both for helping me. I feel a lot better knowing that there are people to talk to who are in the same boat that I am in.
I never qxxperienced what you had, in not being able to see the person. But sometimes when I have a seizure, my head starts spinning and I just can't talk even though I wanna say something and I go down after.
Yea. I used to take tegratol. Now I am on Lamotrigine. Works ok I guess.
Pretty kitty, I am not sure why the pharmacist decided to not allow you to have the Tegretol. Dilantin was the first med I took and it did not do any good at all. It was not for Complex Partials at all. I took Tegretol later on. I did not have a reaction, as in allergic reaction, to either of them, but I have never heard of Tegretol and Dilantin being related. Dilantin is Diphenhydramine, and Tegretol is Carbamazepine. Also, it seems your doc would have not prescribed it if there was a possibility you could have a reaction to the Tegretol. As we all know, some docs are much better than others, but I also read on another message board that one person also had a reaction to Dilantin but now takes Tegretol.Tegretol did a number on my short term memory so its effects were not very good for the quality of life. Depakote was not as bad on memory when I took it. I did gain a good bit of weight and lose some hair on Depakote but not enough to be a problem. The things to consider as most important are how your meds work now, do they STOP your seizures, and what effect do the meds have on quality of life. All of those are very important. If your meds now are not stopping your seizures please be sure your doc knows and ask about all options available. Remember that a general neuro will not offer you other options. You do need the Epilepsy specialist at a Comprehensive Epilepsy Center. That makes such a difference provided the facility if a good one that gives good patient care. I have heard of seizures that affect vision during the seizure. I have never experienced it, but I have heard of it. Doc does need to know that too. It will be helpful in deteremining where the siezures may be coming from. Is vision in both eyes affected ot just one? Tattoo
[This message has been edited by Tattoo (edited 08-20-2002).]
I don't like Depakote. It had me gain a lot of weight too right after I had my little girl and was starting to slim down again. I was thinking of Topamax. Do you know anything about that one? I have a lot of GI issues with that stupid Depakote and tried it for as long as I could stand it. It does work well for the seizures thank God, but the side effects are terrible.
Thank you Tatoo
I think you will find the side effects of Topamax to be much worse than Depakote from what I have read from other posters who have taken it. It is referred to as Dopamax if that tells you anything. I was fortunate enough to never be subjected to that stuff. The main priorityis how it controlls your seizures without harming quality of life. If Depakote does control your seizures, are the side effects worse than the seizures? Also, if you have Complex Partial seizures, and if you have found a med that does control (STOP) your seizures, you are fortunate since they are hardest to control with meds. I do not remember if you mentioned what your diagnosis is, nor what type of seizures you have. That determines which meds may work since they cannot be chosen indescriminately and are specific to certain types of seizures. What is your diagnosis? I still am encouraging you to see an Epileptologist. We all waste so much time and good parts of our lives with poor care and on drugs that do no good. The Specialist can make more of a difference for the better. No doubt!
Outsider, i found it helpful to have someone call me once in a while to check on me. I really didn't need it or so I thought, but I was alone and not controlled. I also was beginning to burn myself and walking around during sleep, so it was helpful to have some call periodically. A cousin that I was close to called me periodically, like once a week. Other than that weekly call, I was alone. My family has never been involved with my epilepsy at all. They chose not to be involved, so I have had to detach from them and try to do what I can for myself. A room mate may be a good idea for you, but someone you trust, friend or relative, and who is concerned for you to call you occasionally is a good idea. You may have to cultivate that friendship, but it is possible. Tattoo
[This message has been edited by Tattoo (edited 08-21-2002).]
just wanted to tell you that i am a single parent with one son. in the 25 years i have had Grand-Mal seizures - my son has only seen me in one seizure. it was kind of funny. i was at my mom's house and my mom could hear my son in the other room saying "mom, quit spitting on me" my thought what the heck is she doing spitting on him? then she realized i was having a seizure. she came into the room and removed my son from what was happening. one time he came home from school and found me on the floor. i could hear him on the phone talking to my mom. i wasn't awake yet, but i could hear him. and then he hung up from my mom, and started YELLING at me to wake up. "Mom, wake up, MOM, wake up". after i awoke he was upset. but, you know what it's part of our lives, he is 20 and attending college now (about 400 miles from me). i live alone, i had a seizure last weekend while i was alone. i broke the dish that i had in my hand. but, all in all i was fine. i get depressed sometimes. i can't let me rule me. i have to have a life also. i surf a lot, i hike i do things that might not be so "safe". but i enjoy life. i do call my sister (she lives around the corner) every other day. and she knows if i don't call her and speak with her or leave a message, she has a key to my house and she will come check on me. hasn't happen yet. quick story, last month i had a seizure and was lighting the BBQ, i guess i started having a seuzure at that moment and the lighter was on and i burnt my arm. i don't know how long i had the lighter to my arm. burnt pretty bad. BUT, lesson learnt. my nieghbor now will light my BBQ, or i don't BBQ anymore.
I don't wish to alarm anyone, but I too thought I was fine being alone if I had a seizure (I have partials, progressing to complex partials, and then ending in grand Mals.)I thought I'd just lie down in a safe place when I had my warning (which I erroneously thought was an aura, but is actually a partial.....visual disturbances and speech difficulty.):round and round: Then my last "bout" ended in statis epilepticus, and I was in critical condition in the hospital. If I had been alone I could have died. Now I have to wear a Lifeline monitor when I am alone. It is like the thing in the commercial..."I have fallen and I can't get up." Whenever my family is not around I need to wear the pendant that holds the "panic button." If the alarm goes off and I don't respond, the dispatchers try my phone. If I don't answer that they send an ambulance right away. I feel much safer. I guess it would only work with people that get "warnings." If any of you do, it may be worth looking into. Good luck, Kathy
When Mamma ain't happy ain't noone happy!
It has been a while. To tell you the truth, I don't even know what kind of seizures I have. I could describe them, but I bet that would not do it justice. The way that I have always thought of them was one would be longer then another, but I guess not. I have always had seizures that make me physically shake, but not the last time. I just kind of stared...
I would not have even known I had a seizure at all (at first anyways)if my friend didn't come and get me because I took too long of a lunch (understandably) God I get so sick when they finish though. I stayed at work afterwords because there was nobody else to call. I got off of Depakote. I now take 900 mg of Neurontin. I don't really have side effects that I can tell. I always have to check my balance, but it may be happening more often. It has only been since Friday afternoon though. Again I am wondering about weight gain. I take Wellbutrin for depression, which made me loose 15lbs, so maybe one will offset the other?? I hope so.