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brindy
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 2/19/2011 4:46 PM (GMT -7)   
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.

EvilFluorescents
Regular Member


Date Joined Jan 2011
Total Posts : 224
   Posted Yesterday 1:45 AM (GMT -7)   
I'm sorry to hear that your daughter is having such a rough time.

I'm much better versed in migraine than epilepsy but (b/c of family history) I am a little familiar with epilepsy.

Your description certainly sounds epilepsy like. That post episode description of flat eyes, slurred speech, etc. sounds classic post-ictal.
It is not uncommon at all for people to experience migraine post-ictal.
In even rarer cases migraine actually precipitates a seizure (ie migralepsy).

Yes, Depakote and Lamictal... definitely not an advisable combo (the risk of stephen johnson syndrome increases, something like four fold).

Sometimes when topamax loses effectiveness, doctors will switch the patient over to a similar drug, zonegran.

Yes, unfortunately Lexapro has gained a reputation for making migraines worse.

It sounds like she was given a VEEG as an impatient. Was she withdrawn from her meds during this period?

I would highly recommend going to a different forum, coping-with-epilepsy.com. They are a group of very helpful, experienced and knowledgable individuals with epilepsy. They may be able to help you out more.

I would be wary of anyone who claims to specialize in both epilepsy and migraine. The doctor may be very knowledgeable about both, but these are such vast fields that it seems unlikely that s/he is a dual specialist (regardless of the institution). I would think the number one priority right now would be to find a top notch epileptologist, and then maybe adding a headache specialist to the team.

Best of luck!

Post Edited (EvilFluorescents) : 2/20/2011 1:48:08 AM (GMT-7)


brindy
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted Yesterday 5:36 AM (GMT -7)   
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.

EvilFluorescents
Regular Member


Date Joined Jan 2011
Total Posts : 224
   Posted Today 12:54 AM (GMT -7)   
Temporal lobe foci sounds like a good fit for the symptoms. I have some other thoughts, but I'll type them tomorrow when I can express them more coherently (tired).

I'm sure you've stumbled onto similar things but here are some links:

http://journals.lww.com/co-neurology/Abstract/2010/12000/Transient_epileptic_amnesia.11.aspx

and

http://qjmed.oxfordjournals.org/content/98/5/383.full

and

http://www.coping-with-epilepsy.com/forums/f22/transient-amnesia-can-form-epilepsy-1043/

The second article makes an interesting and possibly diagnostically pertinent point:

"In most cases, the separation from TGA should be easy keeping in mind the frequent recurrence and short duration of TEA, the combination with further seizure types and the abnormal EEG findings including temporal sharp waves."

Post Edited (EvilFluorescents) : 2/21/2011 1:00:03 AM (GMT-7)


brindy
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted Today 4:59 AM (GMT -7)   
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.

brindy
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted Today 5:08 AM (GMT -7)   
ps Even though this is Wikipedia, it is a good source of info on TEA. However, this and the other articles I can find all say that this occurs in people over 60.

http://en.wikipedia.org/wiki/Transient_epileptic_amnesia

Depakote worked like magic but made her terribly ill, she is trying Lamictal again, and it looks as if Trileptal might be next.

Thanks again.

EvilFluorescents
Regular Member


Date Joined Jan 2011
Total Posts : 224
   Posted Today 5:42 PM (GMT -7)   
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!

brindy
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted Today 9:15 PM (GMT -7)   
Thanks for writing. A lot of this we know, but it is hard to get help that is accessible and also find an MD who will diagnose w/out anything on an EEG.

Just want to clarify that type 1 diabetes has nothing to do with weight. It is an autoimmune disorder in which the pancreas is attacked by the body, and the ability to make insulin is completely destroyed. It is a totally different disease than type 2, which is connected to weight and lifestyle. My daughter is quite thin, and being on Topamax along with depakote kept it that way.

The thing is, depakote raises blood sugars. That means that you increase the insulin rate in your pump to accommodate this rise. But then, when there is a trough between peaks of depakote, or if you miss a dose, there is too much insulin on board. So it is very tricky, with almost constant adjustments of the pump rate for insulin, and very frequent fingersticks to test blood sugar. And the nausea it causes also causes blood sugar to plunge. With diabetes, many meds are complicated this way. Lamictal and other anticonvulsants also affect lupus activity.

There is a neurologist, endocrinologist, rheumatologist, gynecologist, and headache specialist involved, and, of course, none of them talk to each other, and none of them check med side effects for the others' specialties, either!

EvilFluorescents
Regular Member


Date Joined Jan 2011
Total Posts : 224
   Posted Today 10:15 PM (GMT -7)   
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)


brindy
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 2/22/2011 5:11 AM (GMT -7)   
Thanks for your encouragement. Believe me, we are not "beginning to see"! I have been dealing with this child's health issues and a sometimes frustrating health care system for more than 18 years. I could write a book. We're pretty knowledgeable about all this stuff, meaning both migraines and epilepsy, and even the meds, but her sensitivity and other issues are making things more difficult to address than would be expected.

She does not need a diagnosis to see an epileptologist. Diagnosis wasn't really a problem until she agreed to do the 8 day inpatient VEEG. She is being treated with regard to both problems, empirically, but it would be really helpful for my daughter emotionally, to hear that others have these experiences, and that they are considered TLE. It is easy to think you are "crazy" with some of these experiences. Diagnosis also would help target med decisions, as you so wisely picked up.

I have read that people with my daughter's kind of episodes often will hear migraines from 50% 0f MD's and TLE from the other 50%.

It would also be helpful to hear from others with similar experiences, what worked, and how things turned out, especially people who endured undergrad education with these obstacles.

EvilFluorescents
Regular Member


Date Joined Jan 2011
Total Posts : 224
   Posted 2/22/2011 10:58 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)


brindy
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 2/23/2011 5:27 AM (GMT -7)   
My daughter has a great attitude. She had been dealing with health problems since she was 3 (sounds like you have too) and was sometimes out of middle or high school for a month or two. She is much more mature than most, and is sought after by others for help and counsel (again, you probably have had the same experience).

She is a composer, and during these forced breaks, writes music. The last semester break, she produced a 20 minute string quartet.

I don't agree that things will necessarily get better, that's the thing. Both lupus and type 1 diabetes tend to have progressive effects, and apparently migraines and epilepsy can go either way. It has served her better in some ways to recognize that her problems are chronic, and that life may not be easy at any stage, though still rewarding once that reality is accepted. I sure do hope, though, that a trial of one of the meds in a series she is trying, will help with the neuro stuff enough to return her to her life!

Good luck to you too and congratulations on finishing in a rigorous discipline. I am one who knows what it took for you to do that!
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