amnesia

My daughter is on medical leave from college after a second bout of amnesia "spells." She emerges into consciousness around, say, noon, and doesn't remember anything from the previous 5 hours, since her alarm. The first time, a couple of years ago, she wandered around campus and the street. The other 10 or so episodes, she has kept herself in her dorm room, along. Afterwards, her eyes look flat, she slurs, is volatile, and doesn't know where she is or who people are. She does get a headache and extreme sensitivity to light afterward. For a couple of days, she ahs trouble with word recall and spelling etc., which is tough in school.

She also has a lot of other "weird experiences" which seem to happen in seconds, and leave her disoriented or dissassociated.

Her MD's think she has temporal lobe epilepsy, but also say these could be related to migraine.
She just spent 8 days in the hospital, hooked to an EEG, but many people don't have "events" under those circumstances.

She has been on Topamax, which stopped working for the headache, and it is even possible that Topamax, or fluctuating levels of it in a day, may have contributed to these episodes.

Depakote got rid of all of her strange experiences and pain. But the nausea and weakness became intolerable. She had a severe reaction to Lamictal (bleeding, sores, petchiae, flu, etc.) but is rechallenging, and it is happening again.

For meds, it would seem to help to know if any others have amnesia with their migraines, and also, using the wonderful headache specialist would be so much better than using the big name teaching hospital doc who specializes in both epilepsy and migraine. But right now, she is using the latter.

Oh- and she has had severe hemiplegic migraines, on Lexapro, and lesser ones at other times.

She wants to get back to her life, such as it was...life is so hard all the time but at least she would like to get back to school next fall.

Thanks. That's what we feel, too, that it is temporal lobe epilepsy, but MD's won't seem to diagnose w/out EEG evidence, and temporal lobe stuff does not register on EEG unless it is a huge seizure that "generalizes" from the local focus. (Here's another examply, different from the long amnesia episodes: she got up in the morning, at home, went to the refrigerator, presumably for jelly, and grabbed ketchup. She put ketchup on a muffin, then stopped, and said, "Hey, I don't remember doing that." Then, again, she slathered the ketchup on, like frosting. Stopped, and said, "wait a minute, I don't remember doing that." This was a matter of seconds. She then went to lie down and was out of it for awhile, and had some trouble cognitively for about 24 hours.)

She was not on Depakote and Lamictal together. No,no, no! That would be terrible for a sensitive person. She was on Topamax plus Lamictal (had a reaction, probably beginning of SJS). Then just Topamax (a few months into that, she started having the seizures). Then Topamax plus Depakote- magic!!

She takes about 10% of what other people do.

She is also on an insulin pump for type 1 diabetes (for many years), which is an autoimmune disorder, and has systemic lupus, both kind of key when considering meds. I believe that Lamictal causes her lupus to act up, and some anticonvulsants do affect autoimmunity. Many meds also affect blood sugars. When she skipped a dose of Depakote due to nausea, the ambulance had to come to revive her from unconsciousness due to low blood sugar- no fault of hers whatsoever.

I think that more specficially, we need to find an epilepsy doctor who specializes in temporal lobe. In a teaching hospital, some epileptologists won't even deal with you unless there is something on an EEG. Then again, when she was in the hospital, yes for a VEEG, the other team of docs said that what happened to her is dangerous, and they would keep her for a month if they could.

They took her off Topamax entirely, yes, but it takes 2-3 weeks for her to start feeling withdrawal, and she was only there for a week. The other thing is that since we said these seizures had gotten worse on Topamaxx, they had the bright idea to give her a dose on the 4th day, which eliminated any chance of having a "spell" due to withdrawal. They also sleep deprived her but gave her amitryptilene with the Tiopamax (one dose, because amitryptilene has been a trigger) and that sedated her for two days, undoing that strain on her brain. We found the whole protocol to be very irrational and poorly thought out.

Thanks for your opinion. It is helpful.

Thank you. I look forward to any more thoughts. I should add that in the past week, other things have happened besides amnesia, and besides head pain. For instance, last night, she visited her friends at college, and they went to a take-out place to get some food. She was feeling fine, except for her chronic low-grade headache. The all of a sudden, something happened, and things looked and felt strange. It was a moment, but her friends all noticed and asked if she was alright. All of them. She went to the bathroom to try to get collected, but then called home for us to come get her. At home, she was still not herself.

Last week, she was shopping for pj's, crouched to look at something, and started to cry because all of a sudden, she felt sure she had no limbs, no arms or legs, as if they has been cut off.

Her life is full of strange experiences, and she can barely leave the house. She is a talented person who was at a great college, with friends and interests, and it is hard to watch her try med after med. She is trying Lamictal again, but already has nose sores and sore throat, which is how her really bad reaction started last time.

I will go over to the epilepsy forum. Last night did not involve any headache increase. I am quite sure she has TLE, though she seems also to have migraines.

I'm definitely out of my depth here, but these strange experiences your daughter has been experiencing sound like simple and complex partial seizures. Most seizures are actually non-convulsive. It sounds like, given the information, that the neurologists are taking the best approach.

It's a complex issue and given your daughters comorbid conditions, I wonder if adding a neuro-endocrinologist to the treatment team would be of benefit (getting a good epileptologist should still be the first priority though). It certainly wouldn't hurt.

It's too bad that the Depakote isn't a feasible treatment. The med has a reputation for causing weight gain. B/c of this I'm not surprised that, given the t1 diabetes, she is having blood sugar issues. Problem solving through situations like this is were I think the neuro-endorcinologist would be especially beneficial.

It is not uncommon at all for people that have epilepsy to also experience migraine. I have migraine and a family member of mine has epilepsy. This is pretty common as well. Migraine with aura and epilepsy have some clinical similarities (probably why some of the treatments overlap). BTW, patients with epilepsy have to be very careful when taking antidepressants (especially tricyclics like amitryptaline). It can cause the epilepsy to "act up."

Your daughter doesn't have to fit every piece of the criteria to have a specific type of epilepsy. One of my good friends who is also a migraineur, used to have classical migraine. In his early 20's his classical migraine changed to migraine with aura without headache. This doesn't usually happen until someone hits their 50-60's. It's rare for this to happen... but it can.

When going off to college, a lot changes. Diet and sleep usually suffer. This can really impact both migraine and epilepsy. The other forum that I mentioned is very supportive, and I'm sure they will be able to offer a lot of pertinent information.

I hope your daughter finds the right medication (and lifestyle e.g. sleep pattern, diet, supplements) combo that helps soon!

Best of luck!

That sounds like an incredibly frustrating situation to be in. I really do sympathize.

It's too bad you need the diagnosis to get referred to a epileptologist. I know that this is not always the case (it's physician/location dependent). Sometimes a simple referral, with suspicion of epilepsy is enough. As you know with simple and complex partials, with a TL (and some other) locus, it can be difficult to detect activity on an EEG.

It sounds like based on the meds, they were trying to tackle both the migraine and the epilepsy simultaneously. Tegratol is a first line TLE treatment. Trileptal is very closely related, has similar efficacy and usually has fewer/lesser side effects. This is probably why it is next in line.

I didn't mean to imply that your daughter was gaining weight and that this was an exacerbating factor. Rather, because the Depakote often causes an increase in weight, it must have an effect on blood sugar/hormone levels. This would be particularly clinically significant in someone with diabetes (regardless of subtype). Hence the suggestion of getting a neuro-endocrinologist on the treatment team.

It sounds like you already have the enough physicians involved. It's too bad that they don't communicate with one another. It drives me crazy when that happens!

I've had some of my best and worst experiences with physicians at large first tier, world class teaching hospitals (oddly enough, no mediocre experiences... as of yet). As you're beginning to see, the quality of your physician (not necessarily the institution they work at) is extremely important. For my migraine (alone), I've been through multiple GPs, several neurologists and two headache specialists before finding the specialist that I work with now. Part of the "quality equation," includes how well the physicians communicate with one another when dealing with a complex, multidisciplinary issue.

Sometimes when dealing with multiple specialists the most important part of the treatment team is the GP. A GP who makes a concerted effort to be the central mediary can make all the difference.

I'm sorry you're having to deal with this. It's such a tough situation that no one should have to go through. I really hope you do find answers and solutions.

Best!

Post Edited (EvilFluorescents) : 2/21/2011 10:18:18 PM (GMT-7)

Sorry I wasn't able to help more.

Even though I don't have TLE (though I have had a few simple partials), I can definitely relate to your daughter. I have had chronic medical issues (both rare and less common) ever since I was a wee pip-squeek. I've definitely been through the medical merry-go round and have been close to the brink on a couple of occasions.

I'm only a few years older than your daughter and have finished undergrad, majoring in an academically rigorous discipline. It certainly is terrible when you feel like your future is uncertain and you see everybody around you moving ahead with their lives, while yours seems stagnant.

Just remember that you will get this figured out. It is only a temporary obstacle. It may take more time than you like, but everything will be OK. I know it's not much consolation, but you will be such a stronger and more driven individual because of your experiences. Keep pushing ahead and continue to keep yourself stimulated (intellectually and socially).

Best!

Post Edited (EvilFluorescents) : 2/22/2011 11:04:16 PM (GMT-7)