Please help

CDC funded page

Not a CDC funded Page

Hi. I wrote before. I had a seizure 17 years ago, been on tegretol 200mg 2x ad day and have been seizure free ever since. I started having seizure symptoms about a week and a half ago only at night. I cant get to sleep. They just keep coming right after I go to sleep. I think I am only asleep for about 15 minutes or so, and then they hit. I have heavy heart beat, breathe hard, cold sweats, throat feels like I am going to throw up, and I feel like I am going to seize. I never had any convulsions. I have always woke up thoough, and then try desperatly to go back to sleep. But, then it just happens again, and again and again. I am not getting any sleep. People keep telling me to get some sleep. I AM TRYING!!!!!!!!! I have an mri and ekg in two days. I dont have a neurologist and I tried to make an appt and they say I cant see one until Noveember. I cant do this until November!!!!!!! I did see a physicians assistant (my primary care is on maternity leave) and he upped my meds 400 at night. **How long will that take before it takes affect - the increased dose? Will it help?? Why is this happeneing after so long of being seizure free?? I live in a rural community with very little health care but am willing to travel 5 hours to see anyone. Does anyone have any answers??????

Comments

Why do seizures return?

Submitted by grez-monkey on Tue, 2005-09-27 - 12:58

Cameo, You just mentioned that you started having seizure symptoms about a week and a half ago. My question for you is, where you actually having real seizures? And if so, what actual seizures were you having? Overtime and asked each individual becomes older, the absorption of the medication into the blood system slows down. Now I am not a doctor, I am only another patient who has epilepsy. But one thought that has come to my mind is that instead of having an increased dosage amount at night, or any time for that matter, instead of taking the medication twice a day may be there could be a possibility of taking the same dosage amount three times a day. Again, this is just a guess and a thought they came to my mind. Maybe you can experiment with yourself and give these a try. I know that when a person takes medication twice a day that means that they must space the frequency 12 hours apart (3x a day is every 8 hours; 4x a day is every 6 hours, and so on). How soon are you taking your night dosage? If for example, you are taking your medication roughly around 9pm, then maybe you can make an adjustment to take it either one hour before (8pm) OR one hour after (10pm) you're routine time. Prior to you going to bed at night try to avoid anything which might contain caffeine (coffee, tea, chocolate) 4 to 6 hours. Also, try not to take your medication when ever you have your meals, and because this can slow down the absorption of the medication into your bloodstream. I have no idea how active you are every day, but maybe you can do some more active work, such as just minor exercising, going for a walk or jog, because doing this can raise what's called your seizure threshold. Raising the seizure threshold lowers down the chance of having a seizure. These are just some ideas for you to see if any of them can help you to fall asleep better and easier at night. Now here is something that you definitely need to know. Tegretol is one of the six anti-epileptic medications that fall under what's called the 'START LOW, GO SLOW'. Simple and easy to understand. Whenever a patient starts on this medication for the first time it has a wise decision to start at a very low dosage amount (START LOW). Then, when ever you do an increase in the dosage amount, whether it is from the first increase or for any other increases as long as you are on the Tegretol, that increase needs to be very slow (GO SLOW). So if that physician's assistant requested for you to increase the amount you take at night from 200 mg to 400 mg, I would think that it would be best to take at least two full weeks to increase that dosage. First week/seven full days doing 300 mg at night, and then the following week and so on to be bumped up to the 400 mg dosage amount. Doing this can lower in the chance of having stronger side effects and if you do end up having side effects then they may wear off much easier and quicker. Because if you end up jumping from a 200 mg to a 400 mg over a very short number of days then the body is not going to have such an easy chance to adjust to that rapid increase, which means that your body may become toxic, and one of the side effects with being on toxic levels of Tegretol can cause an increase in seizures. Nobody knows how long it will take before it takes effect nor whether if it will help, because everybody's body is different and everyone must go through the trial and error phase in order to find out what the outcome is going to be. I know you said that you do not have any appointment with a neurologist until November. Maybe you could contact that neurologist or their staff members, and have one of them to notify you if there becomes a cancellation/opening available where you can have a chance to come in any earlier. Because it appears that now is the time for you to see a neurologist. I wish you the best of luck and hope that what I have said can become helpful for you. Bruce (link guy) Disabled American Veteran

Grez monkey - why do seizures return

Submitted by cameo on Tue, 2005-09-27 - 17:25

You asked what type of seizures i was having. To be honest, I dont know. These were my symptoms: headaches, hotness, heavy breathing and heartrate, my mouth would start quivering rapidly, i felt like I was choking. I also felt my body go into the seizure. I was conscience the entire time because I was in a light sleep. And I was able to wake myself up. I never truley lose conscienceness. It would only happen about 5-10 minutes or so after I truely fell asleep, not a deep sleep. I remember when I had the other seizure 17 years ago, and I felt the same. The seizure I had before was a grand mal. Now, since my medication has been increased at night (200-400mg) I sleep all through the night until about 4am, then start having those above described symptoms. They still happen every night though. The medicine I take is tegretol xr - would it still help to take it 3x a day?? I do have some good news. I get to see a nuerologist this Thursday, who also specializes in sleep disorders. I am having MRI and ekg, eeg done too. I am happy abuot that. Do you know why someone like me would do fine for 17 years, and then all of a sudden have these every single night???? Is it possible to get back to normal and not have seizures?? Are there people who have it controlled by medicine for thier lifetime?? Or does everyone have breakthrough seizures? Thanks so much for your help.

cameo

Submitted by grez-monkey on Tue, 2005-09-27 - 18:09

They symptoms that you have just explained to me do match the type of seizures called a simple partial seizure/aura. These symptoms or like early warning signals that it is possible that you may end up having a more serious seizure. I've had the simple partial seizures/auras now for over 18 years. But between July of 1994 and the middle of 2003 my simple partial seizures/auras would eventually turn into either complex partial seizures or the tonic clonic seizures (past and outdated nickname of a tonic clonic is grand mal). Here is a website with more information about the simple partial seizures... http://www.epilepsy.com/epilepsy/seizure_simplepartial.html And here is a website with more information about auras... http://www.epilepsy.com/epilepsy/auras.html I am glad that you mentioned that you are taking Tegretol XR, because the XR stands for extended release. So this medication will stay in your body/blood system longer. So it may not be necessary to do the 3x a day. I do not know the exact reason as to why your seizures came back after 17 years, but I can say that it is possible that your body has adjusted to the medication enough to where the medication is no longer are becoming fully effective. And if this is true then the dosage level of the medication might need to be increased ever so slightly to see if you can regain seizure control. This is just one possibility of why and what it might take to correct that problem, but there are several other possibilities as well. See if you can backtrack what all you have done over the past 17 years in relation to your health, your daily intake of nutrition, as just a few examples. There are many people who have been controlled by medication for their entire lifetime; some people can be controlled with medication for many years and then eventually be completely weaned off the medication, which means that they have become seizure free; as well as other people in need to have their medication dosage increased for better seizure control or decreased to lower the side effects. So stay in contact with that neurologists you are due to see this coming Thursday and follow his/her recommendations. If you are uncomfortable with what ever your neurologists explains to you and/or have any questions, please continue to share your information and questions with us, so we can share our experiences that we have gone through just as well. Bruce (link guy) Disabled American Veteran