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Medical Forum / Diseases and Disorders / Epilepsy / December 2007Almost four months since the first grand mal
Well, it seems that in some ways we have a handle on what is happening and in some ways we are at a complete loss. The MRI and EEG showed nothing. My seizures seem to leveled off at about two a week, always one worse than the other. I have had a couple of really bad grand mals, one last week while I was here alone and I lost a little more than three hours. My parents called repeatedly in that time, my Dad came by and rang the bell and knocked and I was unaware of anything. That is the most frightening part for me, is the time lost and the complete disconnection. I fear it will happen while my kids are alone with me again and I don't want that. My Dilantin level last week was too high at 25, and so I see the neurologist today for an update and whatever changes are necessary. I was on Demerol for the pain that I have left over from all the surgeries and damage before. We have changed the Demerol to a medicine that doesn't interact with the Dilantin blood levels badly. We will see if that works. Otherwise we will have to add another medication. Because of my medication allergies and angioedema any new meds have to be added either at the doctor's office or the hospital. We'll see. I really value listening to other people who are living with epilepsy. And the list of links is a God send when I am having a worry filled moment. Cindi On Dec 14, 11:25 am, "Cindi - HappyMamatoThree" <lonnicusuoTAKEME...@yahoo.com> wrote: > Well, it seems that in some ways we have a handle on what is happening and > in some ways we are at a complete loss. The MRI and EEG showed nothing. My [quoted text clipped - 18 lines] > the list of links is a God send when I am having a worry filled moment. > Cindi Did you see a post I did about 2? weeks ago (or longer) called something like "Websites of use to newer people"? It's not all the sites online, but has several that some of the olde timers here assembled over last ~8 years. On the Idaho site (if you have that post or can find it) are 2 First Aid for Seizures charts (one on land, one if swimming), and either that site or at http://efa.org are a list of ideas for how to 'seizure proof' your house. Things like using a microwave versus a stovetop if seizures are not controlled, Auto-off kettles versus ones that boil until turned off, Showers versus Baths until controlled, and things like that. Depending how old your kids are, some of our phones here (Canada) can be programmed with 4-5 numbers on Speed Dial, so they could call your parents or a neighbour, without needing to remember the number, just the number to press for who they want to call. Julie's Idaho website (on list of sites mentioned above) has lots of other tips and tricks like that, that they assembled and some of us sent ideas for-- saves your having to re-invent the wheel if some of the tips can help. This group has been fairly quiet for about 4+ months. From 1998 to 2005 there were about 20 posts a day, from about 12+ timezones around the world. It was a handy way to put up notes like your's above, and replies might come in over the following 4-6 days as the various timezones and people read the messages. Hopefully some of them are still around, and will post too. Welcome to the neighbourhood in the meantime. My szrs. are controlled, after about 3-4 years, and I just got the first computer about year 3 (in 1997). Once I got to the target level of pills that worked for me, my complex partials reduced to 1-2 a month, to 1 in 3 months, to last in 1998. I still take pills each AM and night, but it's a small price to pay for the freedom not having a Surprise Seizure like I used to. (I was first put on Dilantin and my Neuro told me it's the first often prescribed as it's one of the oldest, longest studied, so side effects are documented. Also since the Research costs are all paid off, if you're able to get a level of control that works, it can be reliable and *cheaper than some other pills. Several of the earlier posters had used it successfully a long time.) You could try a Google on e.g. Dilantin&sideeffects, or Dilantin&seizures&control, just to see if anything else turns up. I know what things to avoid with my Tegretol (Grapefruit juice, alcohol, upset stomach remedies), but wasn't online when I was on Dilantin so don't know much about what things to avoid with it. I'm pretty sure the last 2 of above 3 things in the ( )s apply to Dilantin too. Maybe someone with experience with it will show up. I miss the crowd we used to have and the variety of experiences they brought here. Cheers, G. / > Well, it seems that in some ways we have a handle on what is happening > and in some ways we are at a complete loss. The MRI and EEG showed [quoted text clipped - 15 lines] > Because of my medication allergies and angioedema any new meds have to > be added either at the doctor's office or the hospital. We'll see. You just sound so fearful, jumpy and stressful... even perhaps a little paranoid and frightened of your children getting caught by some ghastly, phaedophile at the front door perhaps. Lie down and relax for godsake, clear your mind of all your fears, and leave the kids alone to sit and watch telly! The Devil isn't at the front door and neither are any monsters - they don't exist! You're old enough to know that by now - you're alone in your home with your children!! Sofie  SignaturePlease visit my deviantART page: http://sofen.deviantart.com/ See my response below: >> Well, it seems that in some ways we have a handle on what is happening >> and in some ways we are at a complete loss. The MRI and EEG showed [quoted text clipped - 6 lines] >> complete disconnection. I fear it will happen while my kids are alone >> with me again and I don't want that. > You just sound so fearful, jumpy and stressful... even perhaps a little > paranoid and frightened of your children getting caught by some [quoted text clipped - 5 lines] > enough to know that by now - you're alone in your home with your > children!! What in Cindi's message led you to such a snarky response??? She didn't say anything about pedophiles, monsters or the devil. If you'd read any of her previous posts, you'd see that she's had at least one grand mal seizure at home when her daughter had to take over, call 911, etc. It was very scary for all of them. As a mother, I completely understand the fear of being alone with the children in an emergency. As the mother, we are the ones who are supposed to protect and nurture our children. While it's heartwarming when a child is able to rescue a parent in an emergency (who hasn't choked up during the old Rescue 911 episodes with the little ones calling the ambulance?) it also speaks to our most primal fears as parents. Sofia, the group is called Alt.SUPPORT.epilepsy. If you can't be supportive, perhaps you just shouldn't feel compelled to respond. Cindi, you know I understand your fear. I wish I could make it better for you. All I can suggest is having emergency plans written out on each child's level so that they know what to do and who to call. It can't keep the seizure from happening, but can give you some reassurance in between. Also, about demerol: one of the metabolites of meperidine (demerol) can build up and cause seizures. So if there's something else that controls your pain, I'd encourage you to stay away from it in the future. Love you! Holly >> You just sound so fearful, jumpy and stressful... even perhaps a little >> paranoid and frightened of your children getting caught by some [quoted text clipped - 29 lines] > build up and cause seizures. So if there's something else that controls > your pain, I'd encourage you to stay away from it in the future Gosh Holly, I am still speechless about Sofia's response. Thank you though for you understanding. The Demerol was hard to get rid of but I feel better and my lucid dreams seem to have gone away so I think you are right this is a good decision. I had another Dilantin level checked on Friday, so I should talk to my neuro or her nurse tomorrow and see how it is going. She did say the trick may be to decrease the dilantin and perhaps in the end add a second agent. Her warnings on Friday were that the last seizure may have been stress or sleeplessness related. My stress level has increased lately because of the multiple surgical procedures for my family this week, and the need to help out. This week has been my first big challenge without driving and wanting to be able to go and do whatever I could for everyone. We are learning to work around and cope though. Thank you Holly! Love you Cindi > Love you! > > Holly On Dec 16, 11:49 pm, "Cindi - HappyMamatoThree" <lonnicusuoTAKEME...@yahoo.com> wrote: > > Also, about demerol: one of the metabolites of meperidine (demerol) can > > build up and cause seizures. So if there's something else that controls > > your pain, I'd encourage you to stay away from it in the future The Demerol was hard to get rid of but I feel better > and my lucid dreams seem to have gone away so I think you are right this is a good decision. ** Hi, I don't know anything about Demerol etc. mixed with anti ep drugs, but the Dr. or Pharmacy could tell you what things can be used with Dilantin or not. I had heard even some over-the-counter cold medicines might conflict with some AEDs, so I always show any to the pharmacist who fills my prescriptions. I had thought lucid dreams (where we recall what we were dreaming about?) only happened if we woke up during the dream, so those symptoms could be sign of your having a restless night, and over- tiredness and fatigue can aggravate some of our types of seizures./ I had another Dilantin level checked on Friday, so I should > talk to my neuro or her nurse tomorrow and see how it is going. She did say > the trick may be to decrease the dilantin and perhaps in the end add a > second agent. Her warnings on Friday were that the last seizure may have > been stress or sleeplessness related. *** Several of the szrs. I had before I was controlled seemed to be aggravated by stress or lack of sleep, and many of the breakthrough type szrs. I had (likely different type than yours) I had while using Dilantin alone. If they add a 2nd pill they will likely reduce the Dilantin you use to get an optimum level of control in your bloodstream, or they might even remove the Dilantin and try another single Anti Ep.Med. Then maybe you can enjoy success in getting full control of them. We all hope so. Cheers. G./ My stress level has increased lately > because of the multiple surgical procedures for my family this week, and the > need to help out. This week has been my first big challenge without driving [quoted text clipped - 3 lines] > Love you > Cindi |
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