I'm new to this and need someone's advice and help please

[nikki1124]

I've had seizures since I was 13 i'm now 21. I have had several different doctors and none of them have been able to diagnose me with a specific type of epilepsy. I am currently on Trileptial, Kepra, and Lamictal. I just got put on the Kepra but for the last 6-7months I have been having grand mal seizures at least 5-7 times a month and I keep falling on my face. 3 weeks ago I had to go to the hospital because I had 3 seizures in one night which is extremely unusual I usually only have them within the first 5-10mins of waking up the 1st one was the unusual one the 2nd one I fell asleep after the 1st one so it was like one of my regular ones and so was the 3rd one and I had to get 11 stitches on my top lip and 4 on the inside of my top lip. I can't work and it's like every time I turn around I'm having another seizure and it's killing me inside. It's like they have gotten worse and I can't even describe how much it hurts me inside and I know that every time I have one it scares my family and my boyfriend to death because my seizures are so severe they are afraid that I'm not going to live through them. I have had 4 in the last couple months where I have stopped breathing and one time my lips turned blue because I had stopped breathing for so long. But I come out of it every time. But it scares me because it's like how is everyone going to feel if I really do die from one of these. My doctor is now beginning to believe that I have Frontal Lobe Epilepsy so she's ordered a MRi and a 24hr EEG in the next week and I really hope she finds something because I just want it to be figured out so I can move on and feel like a normal person again. Since the night I had to get the stitches the 3rd seizure happened after I got them while I was walking to my father's car leaving the emergancy room and then I got admitted for a day and I hated it because hospitals scare me and I was in a room with someone else and I just cried because I'm 21 they wouldn't let my parents stay overnight with me. It just upsets me so much. Since I've had them for so long my attention span isn't that great, I could be in the middle of a conversation and just space out. My memory is horrible, I don't want to be like this anymore I just want everything to go back to the way it was

 

[Nakamova]

Hi nikki1124, welcome to CWE!

You've come to the right place. Folks here understand how miserable epilepsy can be, whether it's the seizures, the meds, or the repeated visits to the ER. It sounds like you've been going through a particularly bad patch. Do you have any sense of why your seizures have increased over the past year? Do you know if you have any specific triggers? Have the meds helped? Since the Keppra was added will you be tapering down from one of the other meds? The memory and attention issues might be med-related.

I hope the MRI and EEG provide some answers. Has your doc said how she might change your treatment if the Frontal Lobe Epilepsy diagnosis is confirmed?

Best,
Nakamova

 

[s10sleeper]

Sorry to hear about your troubles, it can definitely be frustrating to not know the exact diagnosis and focal points of your seizures. I was officially diagnosed with epilepsy at 14 although I had been having them as long as I can remember. It took until I was 27 before they knew the exact diagnosis, mesial temporal sclerosis. I had been to multiple neurologists and a large number of medications before they finally sent me to an epileptologist.

Are you currently seeing a regular neurologist? and if so how many meds have you been on that have failed? If you are seeing a neurologist only and have been through multiple meds without it working, I would recommend asking about getting a referral to an epileptologist. The epileptologist was the one that was finally able to give an official diagnosis on mine after multiple eegs, a CT scan, an MRI and a PET scan. Unfortunately they have also diagnosed me as medically refractory and not a candidate for surgery.

Epilepsy centers will be your best bet though for getting them under control as best as possible, although they may still recommend you see your neurologist. If you are referred to an epileptologist, make certain to get all prior medical records to them as they will need to know everything and will need all of the results of your eeg, MRI and such.

As far as memory goes, I can understand, as I had to also start going to a psychiatrist who diagnosed me with ADHD this year and he thinks my long term memory issues, although not related to the ADHD, are probably coming from the lesions in my brain and also the Keppra I am on, which is also causing me to have chronic insomnia, but the doctors insist a take my largest dose, 1500 mg, at night due to constant seizure activity in my sleep.

Anyways, best of luck with everything and I hope that helps some.

 

[nikki1124]

Thank You. I just got put on the Keppra when I was in the hospital when I had those 3 seizures, so I believe that my body is still adjusting to it. I was told that your body changes every 7yrs I think that may have something to do with it if that's true. However, my doctor has been changing my meds to find the right combination for me to be on for the rest of my life. I don't know if anything specific has anything to do with it I think it might be sleep related but I'm not 100% sure the meds have helped but at the same time havent. I was originally when the first discovered the seizures on Depakote but it made me fat and absolutely miserable. So the new doctor I started seeing at the time changed me over to Lamictal and then took me off because I was doing really good and then I started having seizures again. My new doctor is considering taking me off the Lamictal because that's the medication I'm taking that is the lowest dose. I think that the memory and attention issues are related to having the seizures that I have had because I have only had grand mal seizures I have never had any other type. My doctor hasn't said anything about any type of treatment if the FLE diagnosis is confirmed. I'm just so scared and so annoyed with all of it no one on my mom's or dad's side of the family has ever been diagnosed with seizures or any type of problems with the brain. It bothers me so much that I'm the only one who has it and it upsets me so much.

 

[nikki1124]

S10Sleeper
Thank You
Yes I am currently seeing a regular neurologist. I Zoneogran has been the only one. I've been on that and Depakote, Lamictal, Trileptal, and Keppra. I started seeing a psychitrist recently and he prescribed me Trazodone to help me sleep because I myself was also having sleep problems too. I'm on 350mg of Lamictal, 900 of the Triliptal, and 500 of the Keppra and I have to take all of that twice a day. I am also on Folic Acid which is a vitamin and Synthroid because I have an overactive thyroid. I have been recently thinking about going to an Epilepsy Center but the nearest one to me is about 5 1/2 almost 6hrs away from me and thank you for the idea of seeing an epileptologist, I have never thought about it or heard of one.

 

[trish94402]

Keppra and Depalept

I came here today to ask about meds and side effects, but also wanted to let you know that Keppra and other meds may be the right answer. Sure, there are problems with Keppra--my son has had seizures since he was a baby. We've been through just about every anti-epileptic medicine in the book and they didn't stop the break-throughs, made him sleepy and he had a terrible time in school. We ended up with a great neurologist who put him on Keppra, warned us about the side-effects (I wanted to ask, "who are you and what did you do with my kid?" to the raging teen in my house), found out that Multi-vitamins (NOT just Vit. B or B-complex---B6 needs B-complex which needs C which needs certain minerals etc....just get the multi-vitamins)REALLY WORKED!!! However, since he started the Keppra (which he took with Topomax and Depalept, and we have since discontinued the Topomax) he has not had ONE seizure! It took a while to figure out the right combinations and dosages, but so far, so good--it's been 18 months without a seizure. The meds are part of it; 9 hours sleep every night is part of it; a nap every day for an hour is part of the treatment too (when he gets home from work or school).

Now I have a question maybe someone can answer? My son is too embarassed to ask. He has mild CP along with epilepsy. The meds now are Keppra and Depalept. Do either of these have side effects which include erectile dysfunction? I can't find anything on the internet, so we can't figure out if it's the meds or perhaps the cerebral palsy, which causes a mild paralysis on the left side?

If you know please let me know; if you find a web-site with answers, please post it?

Thanks!

 

[nikki1124]

Trish94402
Thank You for the talking about the vitamins I think that might help my problem. I'm sorry your son has to go through what he's going through with his erectile dysfunction problem and I'm happy to hear that he hasn't had a seizure in 18months he's lucky lol. I'm not exactly sure if this website will help but it might I was reading through the women's part of it and I briefly read through the men's part when you asked the question about your son's problem. Tell him that he shouldn't be afraid to ask questions like that I know that they can be embarassing believe me I have asked pretty embarassing questions myself but I believe that sometimes the most embarassing questions are the ones most easily answered, but that's just my opinion.

But here's that website that I was talking about... I hope it helps.

I'm having an error message come up when I'm trying to send this saying I haven't been on this website long enough to send links so I'm putting spaces in it sorry I hope you can figure out where the spaces are.

www efepa org / living-with-epilepsy/ men-with-epilepsy

 

[nikki1124]

I also took the dots out after www and the efepa

 

[trish94402]

Nikki1124--thank you SO much! Your link took me right to the site!! (even with the spaces and no dots!)

Give yourself and your neurologist time to get the med combination right--and btw, we saw a lot of idiot neurologists before we finally landed a keeper. You'll know when you get a good one--someone who wants to work closely with you, get you seizure-free and doesn't treat you like "another day at the office." Having MD after your name doesn't mean you know everything

 

[nikki1124]

Your Welcome Trish94402
And the neurologist that I have specializes in epilepsy and she seems like she's trying really hard to figure this out. I've gone into her office for appointments sometimes with black eyes, swollen eyes, fat lips, with stitches and everytime she sees them she looks like she wants to cry because she feels absolutely terrible that she's unable to figure out what type of meds my body is going to except. I'm going to talk to her about the vitamins and see what she thinks and if she thinks that it's a good idea I'd like to start taking them and if I do start taking them I hope they work because having all these seizures lately is putting so much stress on me and my family and it's just killing me on the inside because I feel like I can't lead a normal life.

And I'm very happy that that link helped you I hope that everything works out for your son too.

 

[s10sleeper]

My doctor has me supplement with 2 extra folic acid supplements a day along with my multivitamin due to low levels because Depakote is a folate antagonist. One of the extra supplements is in a B complex. From what I have been able to research, the B complex with C is good because in a multi vitamin it has little effect as many of the minerals interact with vitamin c absorption, the downside to a multi vitamin. I have always been told by my doctors that the use of a multi is just as a back up since you may not always get enough of each vitamin every day.

If your neurologist handles only epilepsy and has specialized in it, basically they are an epileptologist. If they are not at an epilepsy center if certain tests have to be run they may then send you there, for example with a Wada test as it requires a neuropsych, neurosurgeon and epileptologist.

Also, thanks, that link was interesting. Best of luck to you with everything, things will somehow work themselves out.

 

[trish94402]

Folic acid

This is a great help. My son is already on a multi-vitamin complex to control "Keppra rage" (and it works) but I had not heard about folic acid! Thanks so much!