Question to those with partial seizures

[curwood]

Hello CWE,

I am a psychologist and I work at a state residential facility for adults with severe and profound developmental disabilities. A significant percentage of those we serve suffer from a wide variety of seizure disorders. I am currently working with a young man in his early 20s who has autism and both petit mal and grand mal seizures. His grand mal seizures respond well to medication, but he continues to exhibit partial seizure activity almost every day. The partial seizures are very uncomfortable to him, and he often begins to engage in a variety of compulsive behaviors in what appears to be an effort to manage the discomfort. Many of the behaviors are disruptive to those he lives with (he resides with 12 other males), and efforts to redirect him away from the disruptive behaviors frustrate him even more. This can often lead to an explosive rage in which he screams, destroys property, and strips off his clothing. The force of his rage episodes has resulted in significant structural damage to his home, including cracking walls built from cinder block and steel.

Unfortunately, this gentleman is nonverbal, so we are not able to directly understand or evaluate his experience with his seizures. I am hoping to gain some insight from others on this forum who also suffer from frequent partial seizures. In particular, I would like to know:

1) How common is it to have irritability, particularly extreme irritability/anger with partial seizures?

2) For those who experience irritability, what things in your environment make the experience worse?

3) For those who experience irritability, what coping mechanisms do you have to manage the irritability?

4) Do any of you experience episodes of complete rage? For you, is it an actual neurological event, or is it extreme anger/frustration in reaction to seizure activity/irritants?

Of course, I would also love to hear of how any of these things have responded/not responded to your anticonvulsants.

Thanks very much on behalf of this young man, as well as our staff and his very discouraged family. We have a number of logistical challenges to supporting persons with such challenges in a large, congregate care facility, but we are working very hard to provide the best quality of life for him as we work towards better control of his seizures.

 

[dfwtexas]

Could his meds be the cause of his irratability? I am on Keppra and that is a common problem for those of us on it. I tend to beleive it's the med and not the seizure that causes me to have raging behavior.
Do you know if he is photosensitive? Is so, a variety of different kinds of lights, video games, etc could also trigger this.

 

[dfwtexas]

Oh, also, I know myself and others have stated calming music is very helpful, for me, Christian music is a huge help

 

[elderwanda]

You say this young man is non-verbal. Just curious, have you tried giving him an opportunity to write or type? I know several autistic people (online) who are non-verbal, but can express themselves quite eloquently in written form.

I can't help but wonder if the rage is, to some degree, brought on by an inability to communicate and be understood.

 

[Crystal11]

I know that sometimes when I have a complex partial seizure, I know it's coming by the aura (simple partial seizure). I try to do things to get it to go away like sitting really still, or I start to fidget with things- sometimes I will try to stand up and "walk it off" or I have even been witnessed to changed the station on my XM radio to get it to go away as if I truly believe it will help lol. Of course nothing helped since it was a seizure!
I am thinking that even his lack or inablility to communicate verbally might be a sorce or anger to him. Medications can cause irritability and/or ill feelings as well as the seizure itself. Why hasn't a neurologist or behavioral specialist been consulted? I am just curious. I definatly would talk to his neurologist or neurologist on staff there at the facility though and discuss what changes can be made based off of staff/doctor's observations.
If he is still having partial seizures and no generalized seizures, then his meds might need to be changed or increase, or another medication added on. Also, there might be possible bahavioral issues as a result of his autism or other condition.

I Wish him the best.

Take care,
CM

 

[Crystal11]

Another thing that possibly could help this client is a communication board with pictures and words on it that he can point out. I would put "seizure" and/or "aura" on it as well so that he can let you know if he thinks he is going to have a seizure. I have used them a lot - I am deaf-blind and am verbal but use communcation books and boards for responces back from the person I am interacting with.

Maybe try going to a quiet room without others- he might be frustrated or scared if around a lot of others watching or what not.

I would do some research into the types of seizures he has and what can be done to help him feel better- I do wish the best of luck for him and everyone involved with his care.

-CM

 

[Junebug]

1) How common is it to have irritability, particularly extreme irritability/anger with partial seizures?
I have never had a seizure with irritablity with my partial seizures but I do occasionally have some moodyness when I have a tonic clonic (grand mal) seizure, though it is only on occasion, my irritablity is not rage against others but I am upset because I had a seizure and won't stop crying till after about 10 min. after the seizure is over.

2) For those who experience irritability, what things in your environment make the experience worse? Just like jgbmartin I also take Keppra and that medication is known for causing irritability, though we (myself and others at CWE,) call it Kepprage. My dr. has told me that Vit B6 helps me with my Kepprage.

3) For those who experience irritability, what coping mechanisms do you have to manage the irritability? Most of the time my Kepprage is caused by stress and what is going on in my life. I have 2 daughters who have a love/hate relationship and when they aren't getting along or when they don't want to listen to me then I am stressed about that so when my husband is home I usually go in another room by myself and de-stress by reading, watching TV or listening to my fav music.

4) Do any of you experience episodes of complete rage? For you, is it an actual neurological event, or is it extreme anger/frustration in reaction to seizure activity/irritants? Stress/anger/frustration to seizures AND daily stresses in my life.

 

[curwood]

Thanks everyone for your replies. I am a behavior analyst and our psychology department practices applied behavior analysis, so we certainly have taken a hard look at any operant functions of his behavior. We are also working with an outside epilepsy center that is part of a major university medical center, so we feel confident in that we are covering both our behavioral and neurological bases well. When he was initially admitted, we attempted to explain much of his behavior in operant terms, but as time progressed and we continued our evaluation, it became clear that much of his behavior was related to his seizures. Much of his behavior is similar to others with autism, which threw us off the trail initially.

He does indeed communicate with writing, although his abilities decline as his partial seizure activity increases. Our speech language pathologist has worked toward helping him recognize various images with the aim of helping him communicate pain and discomfort. We have tried getting him to associate "seizure" with his condition with no success. The most he will write when he is having partial seizures is "scared," which certainly gives us some insight. However, he is so sensitive to demands when he is having partial seizures that any request, whether verbal or written, can irritate him.

In terms of his medication, he was tried on virtually everything when he lived at home prior to being admitted to us in January 2007. Oddly enough, he was on Keppra when he was admitted, which caused relatively less agitation than other anticonvulsants. However, he took a very small dose, which kept his grand mal seizures at bay. We have a sketchy history with Keppra at our center due to its tendency to cause agitation, as you describe. We have had relative success with Lamictal, but the university medical center is recommending polypharmacy, so we have tried Topamax, Dilantin, and currently Depakote. He has done worse each time we have added an adjunct to Lamictal, although we are just now starting Depakote.

Again, thanks for the thoughts, and I look forward to reading more ideas from everyone.

 

[Kansas Educator]

Is it possible that he is experiencing panic as part of his complex seizure? I know that I thought I was having panic attacks for awhile until we figured out I was having partial seizures.

 

[curwood]

I would say that panic would definitely be a possibility, especially given that about the only thing he will write when he is having partial seizures is "scared." But his behavior most of the time seems much more like anger or frustration, especially when he is stopped from engaging in compulsive behavior during partial seizures. His compulsive behaviors range from repetitive things such as turning light switches or televisions off (supporting photosensitivity, as others suggested) and closing doors to more unusual behaviors such as standing on sofas, chairs, tables, or even water fountains. Since he lives with several others with autism, his compulsions often compete with his housemates' compulsions, creating another source of fireworks surrounding his seizures.

 

[Crystal11]

I was wondering Curwood, why are you discussing a client's medical and medication history and other topics with a forum when a patient's information is confidential even if you don't use their name at all. I think if you are working for a facility and are dealing with a client in need, that the doctors, staff, and other care providers should give you the answers you need- especially since you are recieving information and/or care for your client from a epilepsy center and a university.
I am sort of confused on how this is being allowed,

Despite this, I do hope things do get better for your client.
Take care and be safe..

 

[curwood]

I have not used his name nor shared any documents, so under HIPPA regulations his confidentiality is being protected. My seeking information from this forum is an attempt to get first-hand information from those who can describe their experiences. I do see the university as a resource, but I simply did an internet search as a first step and found this website, so here I am.

 

[Bernard]

Hi curwood,

A couple points

1. complex partial seizures involve impaired consciousness. Most people who have them are not fully aware of what they are doing or experiencing during the seizure or post-ictal period.
2. Irritability/anger could be symptomatic of a post-ictal state. A person may appear responsive when post-ictal, but they are not truly lucid.
3. Some AEDs can cause irrational moodiness (Keppra is especially infamous for this) as a side effect. If the patient is taking Keppra, the Kepprage might be mitigated with vitamin B6 supplementation.
4. http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
5. [ame]http://www.amazon.com/exec/obidos/redirect?tag=projectmana0a-20&path=tg/detail/-/0802774652/ref=ase_projectmana0a-20?v=glance&s=books[/ame]

 

[Belinda5000]

Partial seizures can be the hardest to control.
That right there can bring on anger.


Belinda:twocents::agree:

 

[brain]

A point to ponder ...

:hello: Curwood;

If you desire to, consult with the Epilepsy Center
and do some research on the Lamictal aka
Lamotrigine; not only does it control seizures but
it also controls psychiatric / psychological issues
as well, however as implied - one must do a research
on this drug considering the patient's medical history
and medications presently on. You "might have" to
put up some "honeymoon" phasing out in the
titration mode while this medication if the Doctors
feel it would be of benefit, and worth a shot at,
et al. But I am not a Medical Doctor, however,
many have profound results from being on Lamictal
(Lamotrigine). Hopefully this would work all out
for the betterment. Another option would be
Zonegran (brand name - not the generic of
Zonisamide due to the fact there are so many
of the generics out there that the formularities
fluctuates - it is not worth it), however, the
patient must have a lot of water.

These two medications listed above seems to do
quite well with individuals who are:

• refractory
• intractable
• degenerative
• progressive
• behavioral

With the above being only a partial listing as
you will find when you do a research study on
these two medications; but the flip-side of the
coin is. Zonegran (Zonisamide) - is no good with
patients who are Asians or allergic to Sulfa.
Lamictal (Lamotrigine) has to be a slow titration,
and there is a rash that would have to be monitored.

I am progressive, degenerative, and intractable.
Having been on Zonegran (brand) for a long time
now; however at this present stage, I am being
in the "honeymoon" of the titration into Lamictal
in due part for I have "no spare tire in the trunk",
in other words - I have nothing to fall back into
if a anti-epileptic drug fails. I used to have Dilantin
(Phenytoin), which unfortunately wrecked havoc
with my dental and had to be removed after being
on it for decades, and it was the "spare tire in the
trunk" when Neurologists tried to move me off of
Dilantin (Phenytoin) to something else that would
control my seizures even better.

With this having being stated; such move developed
tolerance / resistance or drug allergy(ies) or the whole
titration of the combination (aka cocktail) collapsed,
they always had Dilantin "spare tire" to put me back
on. So this is the explanation of what I am going
through at this present stage - sufficient is it that
is being risky with nothing to fall back to; but knowing
Zonegran works ---> they can now try moving me
on something else that is better. So far, Lamictal is
working as the titration continues to move upwards.

I must also add, Lamictal is a "hot item" with both
Neurologists and Epileptologists because of the success
rate, although not all can take it, but the overall
ratio is very good.

But keep in mind that every individual is unique and
as I have posted repetitiously, for we are all like
snowflakes, no two of us are alike.

Here's wishing you all the best for your patient. I
hope you do proceed with some researching and then
evaluating this with consultation with the Epilepsy
Center and go on from there and see how it proceeds.

 

[drarvindr]

Dear Curwood,
Here's responses to the questionnaire you've sent:

1) How common is it to have irritability, particularly extreme irritability/anger with partial seizures?
I get it many times. i don't have incidence and prevalence stats for u .

2) For those who experience irritability, what things in your environment make the experience worse?
In my case , sound. It could be a jerk screaming on his mobile phone today , it could be my dad chewing oatmeal tomorrow. given how autistic patients are sound sensitive , you may want to investigate this further

3) For those who experience irritability, what coping mechanisms do you have to manage the irritability?
I use repression ,sometimes reaction formation as defense mechanisms.

4) Do any of you experience episodes of complete rage? For you, is it an actual neurological event, or is it extreme anger/frustration in reaction to seizure activity/irritants?
What exactly do you mean by "neurological rage"? isn't all rage neurological at some level?

I feel that the person you describe has a problem with something in his immediate environment aside from the seizures , and given that he's non verbal , he cannot tell you what is wrong and that makes it infinitely worse. i think you should look into the ambient sounds and see if something happens regularly that makes a sound which annoys him. perhaps you could record the different ambient sounds and try to isolate what is bothering him.

Hope i've been of help,
Sincerely ,
Dr.Arvind Ramaswamy