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adult onset epilepsy

Looking to see if there are any other women out there with adult onset epilepsy with the complication of migraines and breakthrough complex partial seizures. My tonic clonic seizures have been controlled for one year now with keppra but my complex partials are breaking through the topiramate. They have not found a cause.

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Re: adult onset epilepsy

Hi everyone,

I am 58 just diag last july I had 2 tonic clonic seizures and lost 2 weeks of my memory.  The seizures did not stop with Keppra . As with many the cause is unknown.  Tonight it is hard for my to type that happens.  Right now I am on 1500 mg per day and they are watching to see if I need to add  vampat. I just started to see a Neuro who specializes in E. I work or did in a Peds office and was told if I contnue to have seizeures they would have to move me to a diff job. I did ask what and was asked what would I like to do.  Things went down hill from there and I am on sick leave now and very greatful to not have to work with such wonderful people in the medical field.  HR was more understanding and my new Neuro.  He gave me three months off and added to my Keppra.

My memory is the worst I forget names and what I want to do and the aurras are scarry.  I do have a wonderful husband who drives me around and is great but I do want my life back and a new job. I still want to work. 

Nita

Re: adult onset epilepsy

I am also new to this site. I am 39 and developed partial complex seizures from the Left Temporal Lobe about three years ago. I also didn't go to the doctor initially, thinking I was either losing my mind (de ja vu experiences were strange) or having strange anxiety/panic attacks.  After seeing a local Neurologist and being prescribed TriLeptal I decided to seek out an Epilepsy Specialist and now travel 3 hours to Philadelphia to see her.  This was a great decision...she spends an hour or more with me, is aggressive in her diagnosis and testing, and specializes only in Epilepsy as opposed to the variety of neurological conditions. 

I am now on Lamictal which has very few side effects...as far as epilepsy meds are concerned. I have not had any seizures over the past year, however, have concerns now about night time seizures, as I often wake up covered in sweat followed by a full day of a headache and exhaustion. This occurs during the four days before my menstruation. My neurologist has decided to run bloodwork, conduct a 48 hour ambulatory EEG, and do a full Neuro-psych Evaluation.  This will be done this coming week and I'll let everyone know the results.  The bloodwork did come up with significantly low Vitamin D levels, with prescription strength D I have begun to feel less tired...something they do not routinely test for, but my doctor wanted to test for, thank god! who would have known!

I am experiencing memory problems and word retrieval issues. I feel very anxious lately and am completely disorganized (worse than ever since diagnosis).  I'm not sure if these are all connected, but I suspect so. I have always been a quick information processor and very skilled at both writing and speaking orally...as of late, I feel that i struggle in all of these areas and have begun to worry about my future career and just functioning in life.  I would be interested to hear from others with adult onset and temporal lobe epilepsy.  symptoms, problems since beginning meds, etc.  ADD???  My attention stinks...i can be talking to someone and then a thought will fly through my head not related and I can't continue what I was saying or remember what I was going to say. It's horrible and embarrassing and people don't understand. My family is frustrated with my disorganization and inability to retain information or remember specific things.

Re: adult onset epilepsy

Hi everyone Just new to this site and finding my way around. Have only replied to one post in this forum regarding Non-Epileptic Seizures to jessica25. Thought I was in right place but reading on have now found this topic and it seems to have many similarities to my situation. Please read my reply to jessica25 Thanks Beebs

Re: adult onset epilepsy

Hmm, ok, so I feel a little out of place posting here as a 22 year old, but even at 19 my partical complex temporal lobe seizures were considered adult onset. I was grabbed more by your comment about the added complication of migraines. In my case, my migraines were the much more pressing problem, coming daily without reacting at all to the full range of meds. In any case, in looking for a cause for the migraines we found a small brain tumor in my right temporal lobe. It seems fairly clear that the seizures are a result of the tumor and subsequent surgery to take it out, but there is still no apparent cause of the migraines. I definitely notice a correlation between flare ups in migraines and seizures. It has been suggested that one might be an aura for the other, but it becomes something of a chicken and the egg problem when you have both seizures and migraines too often and too close together.

Keppra didn't work for me, but Lamictal did wonders for my absence seizures, and the addition of Lyrica helps  to control various other manifestations of partial compex seizures. Mine still are not completely under control, but whenever control of the seizures improves my migraines improve and vice versa. Even so, my neurologists are reluctant to say that there is a definite link. I'm not sure how they can deny it though.

One other thought, as a woman, I find that the severity of my migraines and frequency of my seizures varies deepending on where I am in my menstrual cycle. Doctors have been more reluctant to agree that there can be a connection as I have gotten older, like hormones can only affect things during puberty and menopause. Has anyone else who is between those two periods of hormonal upheaval noticed a connection? Thanks.

Re: adult onset epilepsy

OMG OMG OMG!!!!!!!!! You just said it! Mine started to get really bad during the time I starting getting what I know now are occular migraines! I would get a HORRIBLE pain behing my left eye and went to the ER twice because I thought my eye was going to pop out of my head! That's when all of the epilepsy stuff started to get really bad! I was just diagnosed on 01/18/10....wow...I am not alone! Oh, and this type of migraine was different then the one's I had when I was younger. Before I would see spots before I got them and they would be in the front of my head. The ones that I got when the E got bad were behind my eye and always started right after I woke up in the morning. It's strange....email if you have any other questions! ambersers@hotmail.com

 

Amber

Re: adult onset epilepsy

I am new here, too and it is so healing to read about others who have had the same experiences as I have had. I had my first seizure at age 36 and I am now 52. I have complex partial seizures and have had them controlled for 12+ years. I take tegretol extended release. Early on I tried other meds, but this one turned out to have the least side affects for me (it is so individual). Occasionally, (maybe three times a year) I do feel the deja vu feelings. This almost exclusively comes before my period or in high altitude.

I started looking on the internet today because I was getting frustrated with not being able to recall some words and my internal critic was getting a little too loud about my lack of having a sharp and fast memory. I was starting to berate myself with these facts and then I remembered that it might be due to my epilepsy!! It was a relief to read all of your blogs. The really good news is that after all of these years epilepsy does not run my life and so I can forget that epilepsy does have certain affects on me. As soon as I read some of the online articles and then found this site, I experienced relief due to normalizing my situation. Epilepsy is simply part of who I am. It is not my enemy. I actually think that some of the ways I think and process the world are much more creative then if I did not have epilepsy. It reminds me that many creative people in history have had epilepsy. Also, some other cultures deeply honor our ways of thinking and emoting. I encourage us not to discount our way of Being. In a wonderful way, reading all of this reminds me that I am much more then what our culture calls having an "illness of epilepsy". One thing that has helped me all of these years is practicing mindfulness meditation and loving-kindness.

I have raised three lovely children (my kids and I rode our bikes everywhere for a year when I lost my license that first year), and last year I finished my Master's degree. I am looking forward to continuing to read all of your comments.

Re: adult onset epilepsy

Hi my name is Tina, I have had 3 seizures, the first one was happened just before my 42nd birthday in the morning, the drs did many tests and found nothing. The second one happened a month later after I had went to bed. Still after more test EEG,brain scan, ct scan they found nothing, but put me on topamax. It has been 4 1/2 years and had another seizure on Sept. 27th 2008. ( I would acted panicd then blackout, i would wake up when the
ambulance came but have no memory what happened, I still dont, my
boyfriend said he thought i stopped breathing for a min, but i never
started shaking) since my first seizure I have had problems with memories, emotions, auditory halluncinations, and major headaches. 

My auditory halluncinations and headaches were getting worse for the past year, but I couldnt find a dr that would listen to me. I own and run a mobile hair salon in which I drive a 27 foot RV converted into a salon on wheels. My heart Dr informed the DMV that I could no longer drive. I am going crazy, I have no insurance and no insurance will touch me. I dont know what to do. The drs changed my medication but the auditory halluncinations and headaches along with lightheaded and nausea still persist.      

I feel lost,any sugestions

Re: adult onset epilepsy

Wow, I really wish I would have found this a year ago when my seizures and headaches started at age 26.  But my Neuro had me thinking the two were not connected. I haven't been able to get rid of the headaches over the past year and am still having breakthrough grand-mal seizures while I am taking Topomax 250mg. And why can't my seizures ever come on while I am laying tucked in my bed????

Re: adult onset epilepsy

Hi everyone, new to this site.

 My first grand mal was a "19th birthday present." I guess I was an adult. I have suffered from fairly severe migraines since I was a young teenager. Topamax has recently helped with this - I have been migraine free for about a year and a half! I still do have mild headaches occasionally. It also helps with some of the petit mal seizures, although my left pinky is tingling pretty bad right now making it hard to type... Topamax doesn't control my grand mals - my neurologist tried that. I have been taking carbamazapine since I was diagnosed. Still having grand mals more frequently - about once a month - and am going for a video EEG and they have increased my meds, yea I feel great. 

 I don't really think anyone is alone out there when it comes to epilepsy. It's really hard to believe there's so many of us... each with our own but somehow similar story...

 Lindsay

Re: adult onset epilepsy

Hi Ladies I'm new here first time on any site so glad to be here and see you all started crying being so close to people like me soooo many times I feel alone. I was diagnososed in 1998 with temporal lobe and complex parial both hard to control with me at the time taken off work put back on off on off on bla bla bla you know the story family watching and coworkers and oh how about the drivers license when you go the E.R. no more license anyhow so glad to be alive today. Lindsay my doctor put me on Tegratol (carbamazapine) ugly side effects and then I heard about Lamictal 2 years later similar to Tegratol with out some of the stuff in it that makes it ugly that's what a doctor I work with said. and in combination with Topamax they were antiepileptic meds. If interested bring this to your doctor I felt much better and the swelling went away with them.

Ba bye 

JeanMarie

Re: adult onset epilepsy

I am 53 and was just diagnosed with TLE a week ago although I realize now that I have been having partial seizures for at least 15 years -- I just didn't now what they were. I also have migraines. My mri was okay but my eeg did show abnormalities. Makes me wonder how many people are walking around with epilepsy who are explaining their symptoms away like I did.

Roxie

Re: adult onset epilepsy

Like everyone else, so glad to find this posting!  I had adult onset TLE too - first grand mal was about six months ago (I was 24 at the time, I'm 25 now).  I had horrible migraines in the month leading up to the seizure - so bad i was sure i had a brain tumor or something.  THen I had the seizure, and they found abnormal activity in the temporal lobe and started me on Keppra.  I attributed the Keppra to getting rid of the headaches, but now the headaches have returned.  I'm frustrated with my neuro who does NOT specialize in epilepsy, and I am currently trying to switch.  I have been having the headaches in greater frequency along with auditory hallucinations, which he told me was psychosis from the meds!  (From what I have heard on this site, it sounds a lot more like simple partials to me!).  Anyway, would love to hear more from anyone about the connection between migraines and seizures.  Since I've only had the one seizure, I have no idea if I'll ever have another, if I should stop driving, etc.  Anyone have any advice?

Hi ib34, I wasn't diagnosed

Hi ib34,

I wasn't diagnosed with epilepsy till I was 34, TLE, and I have suffered with migraines for most my life. I had thought my szs were under controll, CP & SP, with trileptal but I've been having break throughs as well. I too am looking for answers here, but I wanted to say hello and that your not alone. I have read that aeds can loose their affect after time so people either switch medications or add to it. That's a possibility for us both.

I surely don't have all the answers, but I understand what your going through, as do many here :o) There is alot of informative people here that are very helpful. I'm sure you will get some good feedback that will help you.

Sincerely,
Sausha

Re: Hi ib34, I wasn't diagnosed

LB

Dear Sausha,
Thank you so much for your reply. I just got placed on a third med. and as usual I'm adjusting to the s/e's. It is good to here from another adult onset epileptic with migraines. I don't know what TLE stands for. I haven't had CP only Tonic Clonic and the SP. I know God has a purpose in all of this but these adjustments to knew meds are sure getting tiresome on me and my husband. I sure do appreciate your response.

Sincerely,

Lynn

Hello lb34, I am new here

Hello lb34,

I am new here and had my 1st seizure 4 months ago. it was a biggie..tonic clonic originating in my temporal lobe. I started on Topamax too and have had no further major ones but struggle with smaller ones and may need to increase the dosage, so as with you, med you say, tolerances may be developing with me.

I feel my brain getting more irritable lately and am concerned.
Plus I have returned to work (and my coworkers are watching me like hawks)and am more stressed, so I have a new trigger. :)

I have head and neck injuries in my past. Its also possible I had a seizure when I was pregnant, I thought I fainted and never followed up. This was 27 yrs ago..who knew?? I am now perimenopausal (catamenial/hormonally influenced seizures?) All my MRI's are normal.

Lots of nice people here. Keep in touch..it helps to share. :)

Sounds like the Top is not helping your headaches...too bad. It helps mine luckily.

Spaznurse

Re: Hello lb34, I am new here

LB
Hi spaznurse, wow. Sorry to here about your first grand mal thats how mine started and it was quite a blow to say the least. I am new here too. I am glad you started here earlier than me. It does seem that there is a lot of helpful info on this site. I have also found some interesting info on Google Scholar and then looking up Migraine + epilepsy a lot of medical journals and what not. I never thought much of my migraines even though they were hemiplegic with aura and N/V I'd just tough em out and take the occasional advil. It took the Tonic Clonic to get me to a Neuro. Anyway, ,enough about me. Hope all continues to go well on your topomax. I found it makes me tired they are trying me on a new med called Namenda You might be familiar with it it's for Alzheimers pts but is also effective for epilepsy and migraines. Heck I'll take the Alzheimers coverage at this point:)
And it has actuall had the least s/e's of all my meds so far. It's new on the market. Just approved by the FDA. O.K. God Bless You. LB

Re: Hello lb34, I am new here

Hi spaznurse,
I am a 45yo critical care RN with a long history of severe migraine problems....I developed complex partial seizures in 2004 but this was not diagnosed as such until a year later...I am now under the care of a neurologist and on lamictal and keppra but am still having problems. I continue to take propranolol and nortriptyline for migraines as well as cafergot. I started to have significant problems with concentration and memory...almost accidently killed a patient at work at which time I took myself off work and have not been able to go back since...I'm having a very difficult time dealing with what now looks to be loss of my 18 year nursing career not to mention the financial and social problems. Even more upsetting than any of this is the fact I feel like I am on the decline in my mental functioning....you mentioned a concern about your brain getting more irritable....what exactly did you mean by this....your co-workers watching you....do my problems sound familiar to you??? I had my initial EEG showing epileptiform discharges....MRI X2 ok....inpatient video EEG abnormal due to interictal waveform abnormalities in my left temporal lobe...interestingly, my migraines are almost always on the left....sorry for going on and on....appreciate any input!!!
feeling desperate

Re: Hello lb34,I am new here

Hello,

I am recently diagnosed with a seizure disorder. I am worried about my future employment as an RN. I have been a RN for 30 years. Are you able to draw disability?

Re: adult onset epilepsy

I just wanted to chime in on this one. I always say my seizures and migraines were 30th birthday "presents" from my body. I never had a problem with either until then, and the cause of them is still unknown. I, too, have TLE--temporal lobe epilepsy. Look up what your temporal lobe is responible for if this is your diagnosis. It will help you understand a lot of your symptoms if you have problems with memories, emotions, auditory halluncinations...regardless, know that you are not alone. When I'm feeling ok enough to joke about it, I always say my warrantee must have expired. Hang in there, all of you.

Re: Re: adult onset epilepsy

LB

Hey Hiedi, Thanks. I guess if I would have looked up what my temporal lobe was responsibel for things might have been clearer. I guess I have been waiting for the magic scan to reveal all. I do have all those things you listed and I do have a lot of good days that I can laugh about all of this. My first seizure- a grand mal was a couple of days before my 35th b-day a present as well. I like your warrantee joke, that's a good one. Now my knee is going- not good for an epileptic we'll see what's going to drop out from under me next. Yes, I'm laughing as I write this. God has done a lot of good things for me through it all. Thanks again. Lynn
P.S. Thanks for clearing up for me what TLE is I don't know when that would have clicked for me.