Diagnosed yesterday...

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Good Morning,

I have been having deja vu sensations about twice a year since 2003. In 2003 I had a MRI which was clear and decided not to see a neurologist. In March of this year, I had two more deja vu experiences and decided to see a neurologist. I had an EEG the first week of May and finally saw a neurologist yesterday. After a long discussion of my symptoms and test results, he concluded that I have epilepsy. My EEG was abnormal during my drowsiness state in the left temporal region. He stated that they were not epileptic spikes but rather a pattern different from what one would consider normal for the drowsiness state. My seizures are simple partials. I am going to have another MRI to take another look at the region of the brain and will see the doctor again after the MRI. We also talked about medications and named several for me to research--Lamictral, Trileptal, and Tegretol were some he listed. We talked about the some of the pros/cons with taking medication and why some do take it and some don't. I am having a hard decision with taking medication. Any thoughts on this or my diagnosis...he indicated that simple partials may progress into larger seizures--that is what scares me...Thanks, Lisa

Comments

RE: Diagnosed yesterday...

Submitted by grez-monkey on Wed, 2005-05-25 - 11:53

Lisa, I searched and read over the past posting you have done, but never recalled seeing any of them before, until this one here and now. One of the emotional difficulties is that youÂ’ve been diagnosed with epilepsy [I have it too, so I know what itÂ’s like]. That was the bad part. But hereÂ’s the good part, with your symptoms description and with what your doctor found with the EEG, this aided in determining the type of seizures youÂ’re having. With these results, it narrows down the gap of what antiepileptic drugs [AEDs] are most effective for the seizures. According to a chart description I have, it displays that both Lamictal, Trileptal, along with Neurontin and Topamax, each one alone can become effective for simple partial seizures. Since your neuro mentioned Lamictal and Trileptal, I suggest that you ask for the neuroÂ’s recommendation and/or flip a coin. Whichever one is chosen, the first few days, maybe even a week or two, of starting any medication and increasing the dosage amount, you will most likely begin to have some minor/common side effects. This is due to the body adjusting to the medication(s). If you notice any serious side effects, notify your doctor immediately. HereÂ’s one online websites Â‘table of contentsÂ’ that has the General Information and Available Seizure Medications. www.epilepsy.com/epilepsy/seizure_medicines.html

Sleep depravation, stress and anxiety can be, or in my own opinion and experience are, reasons why people have seizures. So people, but not everybody. There is something else you may want to check in to and look over. IÂ’ve had simple partials for 18 years, gone through several AEDs, tests, etc, but still no control with me simple partial seizures, until now. This is something IÂ’m doing myself and itÂ’s helping enough, but not completely, yet. Please take a look at one of my other postings, under my other user name of Â‘batmanÂ’ [changed names due to epilepsy.com computer tech problems], located on this website. http://communities.epilepsy.com/epilepsy_community?go=800741

Yes it is possible for simple partials to progress into larger seizures, but itÂ’s also possible to get the minor ones under control so they DO NOT progress forward, but backwards. It can be scary, especially when someone is new to epilepsy, but the more you know about epilepsy can greatly lower that level of being scared. ThatÂ’s what this online epilepsy support group is designed for. ItÂ’s not the medical expertise side of terminology and knowledge, but the patientÂ’s side to provide easy to understand answers to Â“what the heck are these doctors doing and talking about?Â”

Hope this help you. Please stick around and keep us posted on your outcome. And also help us with your experience about epilepsy so we can move forward to help other newbies.

Bruce CJ

Lisa, I searched and read over the past posting you have done, but never recalled seeing any of them before, until this one here and now. One of the emotional difficulties is that youÂ’ve been diagnosed with epilepsy [I have it too, so I know what itÂ’s like]. That was the bad part. But hereÂ’s the good part, with your symptoms description and with what your doctor found with the EEG, this aided in determining the type of seizures youÂ’re having. With these results, it narrows down the gap of what antiepileptic drugs [AEDs] are most effective for the seizures. According to a chart description I have, it displays that both Lamictal, Trileptal, along with Neurontin and Topamax, each one alone can become effective for simple partial seizures. Since your neuro mentioned Lamictal and Trileptal, I suggest that you ask for the neuroÂ’s recommendation and/or flip a coin. Whichever one is chosen, the first few days, maybe even a week or two, of starting any medication and increasing the dosage amount, you will most likely begin to have some minor/common side effects. This is due to the body adjusting to the medication(s). If you notice any serious side effects, notify your doctor immediately. HereÂ’s one online websites Â‘table of contentsÂ’ that has the General Information and Available Seizure Medications.  <a href="http://www.epilepsy.com/epilepsy/seizure_medicines.html">www.epilepsy.com/epilepsy/seizure_medicines.html</a> Sleep depravation, stress and anxiety can be, or in my own opinion and experience are, reasons why people have seizures. So people, but not everybody. There is something else you may want to check in to and look over. IÂ’ve had simple partials for 18 years, gone through several AEDs, tests, etc, but still no control with me simple partial seizures, until now. This is something IÂ’m doing myself and itÂ’s helping enough, but not completely, yet. Please take a look at one of my other postings, under my other user name of Â‘batmanÂ’ [changed names due to epilepsy.com computer tech problems], located on this website. <a href="http://communities.epilepsy.com/epilepsy_community?go=800741">http://communities.epilepsy.com/epilepsy_community?go=800741</a> Yes it is possible for simple partials to progress into larger seizures, but itÂ’s also possible to get the minor ones under control so they DO NOT progress forward, but backwards. It can be scary, especially when someone is new to epilepsy, but the more you know about epilepsy can greatly lower that level of being scared. ThatÂ’s what this online epilepsy support group is designed for. ItÂ’s not the medical expertise side of terminology and knowledge, but the patientÂ’s side to provide easy to understand answers to Â“what the heck are these doctors doing and talking about?Â” Hope this help you. Please stick around and keep us posted on your outcome. And also help us with your experience about epilepsy so we can move forward to help other newbies. Bruce CJ

Lisa, I searched and read over the past posting you have done, but never recalled seeing any of them before, until this one here and now. One of the emotional difficulties is that youÂ’ve been diagnosed with epilepsy [I have it too, so I know what itÂ’s like]. That was the bad part. But hereÂ’s the good part, with your symptoms description and with what your doctor found with the EEG, this aided in determining the type of seizures youÂ’re having. With these results, it narrows down the gap of what antiepileptic drugs [AEDs] are most effective for the seizures. According to a chart description I have, it displays that both Lamictal, Trileptal, along with Neurontin and Topamax, each one alone can become effective for simple partial seizures. Since your neuro mentioned Lamictal and Trileptal, I suggest that you ask for the neuroÂ’s recommendation and/or flip a coin. Whichever one is chosen, the first few days, maybe even a week or two, of starting any medication and increasing the dosage amount, you will most likely begin to have some minor/common side effects. This is due to the body adjusting to the medication(s). If you notice any serious side effects, notify your doctor immediately. HereÂ’s one online websites Â‘table of contentsÂ’ that has the General Information and Available Seizure Medications. www.epilepsy.com/epilepsy/seizure_medicines.html

Sleep depravation, stress and anxiety can be, or in my own opinion and experience are, reasons why people have seizures. So people, but not everybody. There is something else you may want to check in to and look over. IÂ’ve had simple partials for 18 years, gone through several AEDs, tests, etc, but still no control with me simple partial seizures, until now. This is something IÂ’m doing myself and itÂ’s helping enough, but not completely, yet. Please take a look at one of my other postings, under my other user name of Â‘batmanÂ’ [changed names due to epilepsy.com computer tech problems], located on this website. http://communities.epilepsy.com/epilepsy_community?go=800741

Yes it is possible for simple partials to progress into larger seizures, but itÂ’s also possible to get the minor ones under control so they DO NOT progress forward, but backwards. It can be scary, especially when someone is new to epilepsy, but the more you know about epilepsy can greatly lower that level of being scared. ThatÂ’s what this online epilepsy support group is designed for. ItÂ’s not the medical expertise side of terminology and knowledge, but the patientÂ’s side to provide easy to understand answers to Â“what the heck are these doctors doing and talking about?Â”

Hope this help you. Please stick around and keep us posted on your outcome. And also help us with your experience about epilepsy so we can move forward to help other newbies.

Bruce CJ

RE: RE: Diagnosed yesterday...

Submitted by Gretchen on Thu, 2005-05-26 - 03:25

Hi LisaIsn't deja vu annoying? I go through spells where I have it quite a bit. Then spells where they switch off to something else! Are we having fun yet? Bruce covered most of anything I'd say except to stress that the object of epileptic care is to avoid seizing. It seems like your doctor has already told you this. I can only say several neurologists and my current epileptologist have told me this too, so I'm quoting, I'm not a doctor able to state this professionally, but I've always been told your goal is to stop sz's because as you were told the more you seize, the more you can seize and the more severe those seizures can get. Additional seizure types can develop and to be honest with you even on medication that can happen and frequently does but you would have a "leg up" if you are already on AEDs, IMO.I've really been thinking a lot about this lately but I've never known of any group of medications that effect people so differently than the AEDs (anti epileptic drugs). I have unusually severe side effects to most of the AEDs, which is one of two reasons for intractability which I also have. When I read for instance someone is taking Neurontin without problem? I gasp. I took TWO pills of Neurontin and solidly slept for 3 days. Most people though who do experience side effects, and most do have some, will find those side effects dissipating in severity or going away over time. The ticket I think it to go up s-l-o-w. IOW your doctor will start you on a low dose and gradually raise your dose higher while he's watching your sz activity. Lamictal BTW comes with a nice little starter pack. Some doctors I think just jack rabbit people up way too fast. That's happen to me far too many times. I refuse to do that ever again. Maybe some can get away with it. I can not. I'm on Dilantin, among others, and the typical way of prescribing that is starting with a dose of 300 mg taken all at once, once a day. I did that and I could barely move from fatigue, feel asleep if I sat down, and when I was heading sluggishly into the 9th week still like that I consulted with my pharmacist. He had me do some "creative dosing", I split up my 3 capsules over a 24 hour period, and while I remained a little drowsy for another month, now I don't think I'm drowsy at all on it. On the other hand I can't remember what I felt like for sure before I went on it. I'm going to go straight out on a limb here but don't get on Dilantin. Every doctor I've gone to has hated me being on it but so far it's the only thing of two things I can take but now even the makers, Parke-Davis, have said it's for short term use. I've had more than nasty side effects after 6 years on it, I've had some serious complications and I'm stuck on it - at least for now. I usually never am that bold but I will be about Dilantin and I know others have had similar problems.But about Neurontin? There is some kind of concern about Neurontin right now but I can't remember what it is. It's published on this site too. Maybe if you click "Main" it's there. Or a pharmacist could tell you too.On AEDs? Often it's you have to give a little to get. The only other thing I'd add is I'd NEVER EVER start two AEDs at the same time. Because if you have a bad side effect you won't know which drug it is. But I doubt your doctor would do that. However I wasn't sure from your post and that did happen to me and I started having frightening hallucinations. NOT a good deal. Slow and easy.Good luck. Being diagnosed, getting your AEDs straightened out, all of the testing, the realizations etc? This is a tough period for you. Keep with us. Keep posting. I'll be looking for you.Gretchen

RE: RE: RE: Diagnosed yesterday...

Submitted by lisab on Fri, 2005-05-27 - 17:10

Thanks Bruce and Gretchen for the information. I am doing some research on the drugs the doctor has suggested as well as looking at my own diet and eliminating things problematic to me (caffeine for example). I have a MRI scheduled for next Sunday that has me a little nervous. I had a MRI in 2003 after my first deja vu episodes and it was clear. The doctor (and I) want to do another one--this will be in the closed tube. Since the EEG showed the abnormal slowing in my temporal lobe the doctor wants to take another look, especially in that area. I have no family history of epilepsy and no high fevers or injuries that would have precipitated this.

When I discussed the meds with the doctor he said he could not guarantee that I would not have another seizure--you just hope the medication supresses it. I am trying to comes to term with this. Several months/years pass between deja vu's so then I hope it won't happen again. Deep down I know that it will happen again and it may be larger...Lisa

Thanks Bruce and Gretchen for the information. I am doing some research on the drugs the doctor has suggested as well as looking at my own diet and eliminating things problematic to me (caffeine for example). I have a MRI scheduled for next Sunday that has me a little nervous. I had a MRI in 2003 after my first deja vu episodes and it was clear. The doctor (and I) want to do another one--this will be in the closed tube. Since the EEG showed the abnormal slowing in my temporal lobe the doctor wants to take another look, especially in that area. I have no family history of epilepsy and no high fevers or injuries that would have precipitated this.