The Romberg's Connection 2009 Survey Results

Brain Seizures

Page 22. III. Associated Symptoms (page 1 of 4) cont.: Seizures
1. Please select the type/types of Seizures:

Type

Responses
(25)

% of Number responding

Grand mal

62%

Jacksonian epilepsy
(sensory seizures)

15%

Loss of feeling

23%

Petit mal

46%

Tingling
sensations

31%

Other (Specify)

15%

Number responding = 13 / percent responding = 9% of total respondents (143).
Note: This was a multiple choice question.
This chart has links to additional information.

Page 22. III. Associated Symptoms (page 1 of 4) cont.: Seizures
2. Please list any medications taken for seizures:

Comments (11)
TRILEPTAL 600MG DAILY, DOWN FROM 1200 MG
Dilantin (400 mg daily), but began having visual auras again after three years of no symptons). Keppra for a few weeks, slowly ramping up. Now Lamictal (400 mg daily) and no auras since November.
Phenobarbital at age 12 for about a month or so.
Keppra for migraines and seizures.
AUGMENTINE DEPAKINE (solución) DEPAKINE CRONO KEPRA LABILENO LUMINAL MYSOLINE NOOTROPIL NORMOVITE SABRILEX SIBELIUM SOMAZINA TEGRETOL TOPAMAX TRILEPTAL ZONEGRAN
Keppra Trilepta ** We are VERY careful NOT to use a generic brand which is NOT the same. Ativan for anxiety related to seizures. Clonazepam as a sleeping aid.
Currently taking Neurontin, Lamictal and Keppra. Have taken almost all anti-seizure medications in the past at one time or another.
100 mg. Topomax 2X a day. Once in the a.m., once in the evening before bed.
Tegretol (carbamazapin) 200 mg 3x a day Lamictal (lamotrigine) 100 mg 5x a day
Every kind, I can't list them all.
Keppra

Number responding = 11 / percent responding = 8% of total respondents (143).
Note: These medications with these four questions are combined in a chart below.

Page 22. III. Associated Symptoms (page 1 of 4) cont.: Seizures
3. Length of time medications were taken:

Comments (11)
11 YEARS
Dilantin, three years; Keppra for a few weeks; Lamictal 4 months
About a month
Over 1 year
13 years, taking 2 or 3 medication at a time.
6 months
Been on anti-seizure medicines since age 3.
Have gradually increased since October '08.
Will be taking them forever.
3 years
18 months

Number responding = 11 / percent responding = 8% of total respondents (143).
Note: These medications with these four questions are combined in a chart below.

Page 22. III. Associated Symptoms (page 1 of 4) cont.: Seizures
4. Please explain if these medications were or were not helpful:

Comments (11)
WERE HELFUL
Yes, they were and are very helpful. The Keppra, however, brought on severe psychotic reactions (severe hostility, depression and thoughts of suicide: all three of these were rare reactions which the paperwork cautioned users to contact the doctor immediately).
I didn't take them long enough to find out.
Keppra but they keep upping it because she needs to have less migraines. She has only had two seizures.
Probably Sabrilex was the best medication, that got for huge time Tasio free of seizures. It is difficult to say, how good some of the meds were, because I can't compare with not having taken meds at all.
Having breakthrough seizures...presently adjusting medication.
Seizures are intractable, but they would be even worse without medications.
So far, so good!
I am seizure free with this medication.
Not really, see previous answers. She had some seizure activity until the day she died.
Somewhat

Number responding = 11 / percent responding = 8% of total respondents (143).
Note: These medications with these four questions are combined in a chart below.

Page 22. III. Associated Symptoms (page 1 of 4) cont.: Seizures
5. What were some of the side effects of these medications:

Comments (11)
NONE THAT I REALIZED
Dilantin: swollen gums, mild fever (about 1 1/2 degrees) Keppra: severe psychotic reactions (see above) Lamictal: none so far
They made me sleep all the time.
You cannot miss a dose that can cause a seizure, have to take with food. Can cause I believe kidney problems.
somnolencia, irritabilidad, lentitud, torpeza .... (Note: A rough translation has been provided: "drowsiness, irritability, slowness, stupidity")
Tired
No response
Tingling in fingers and toes, but they made me lose weight, so I don't care!!!
Sleepiness, fatigue, forgetfulness, some loss of coordination at the beginning. The forgetfulness persists, other symptoms have faded.
Memory loss Kidney infections Immune system compromised Acting stoned Inappropriate behavior Slurred speech
No response

Number responding = 11 / percent responding = 8% of total respondents (143).
Note: These medications with these four questions are combined in a chart below.

Page 22. III. Associated Symptoms (page 1 of 4) cont.: Seizures
Combination of the four questions for these medications:

Medication	Length time taken	Helpful or Not	Side effects
TRILEPEPTAL 600MG DAILY, DOWN FROM 1200	11 YEARS	WERE HELPFUL	NONE THAT I REALIZED
Every kind, I can't list them all.	3 years	Not really, see previous answers. She had some seizure activity until the day she died.	memory loss kidney infections immune system commpromised acting stoned inappropriate behavior slurred speech
AUGMENTINE DEPAKINE (solución) DEPAKINE CRONO KEPRA LABILENO LUMINAL MYSOLINE Nootropil NORMOVITE SABRILEX Sibelium Somazina TEGRETOL TOPAMAX TRILEPTAL ZONEGRAN	13 years taking 2 or 3 medication at a time.	Probably Sabrilex was the best medication, that got for huge time Tasio free of seizures. It is difficult to say, how good some of the med where, because I can't compare with not having taken med at all.	somnolencia, irritabilidad, lentitud, torpeza .... (Note: A rough translation has been provided: "drowsiness, irritability, slowness, stupidity")
100 mg. Topomax 2X a day. Once in the a.m., once in the evening before bed	Have gradually increased since October '08	So far, so good!	Tingling in fingers and toes, but they made me lose weight, so I don't care!!! : )
Phenobarbital at age 12 for about a month or so.	about a month	I didn't take them long enough to find out.	They made me sleep all the time.
Keppra	18 months	Somewhat	No response
Keppra Trileptal ** We are VERY careful NOT to use a generic brand which is NOT the same Ativan for anxiety related to seizures Clonazepam as a sleeping aide	6 months.	Having breakthrough seizures...presently adjusting medication.	Tired
Currently taking Neurontin, Lamictal and Keppra. Have taken almost all anti-seizure medications in the past at one time or another.	Been on anti-seizure medicines since age 3.	Seizures are intractable, but they would be even worse without medications.	No response
Keppra for migraines and seizures	over 1 year	Keppra but they keep upping it because she needs to have less migraines. She has only had 2 seizures.	You cannot miss a dose that can cause a seizure, have to take with food. Can cause I believe kidney problems.
Dilantin (400 mg daily), but began having visual auras again after three years of no symptons). Keppra for a few weeks, slowly ramping up. Now Lamictal (400 mg daily) and no auras since November.	Dilantin, three years; Keppra for a few weeks; Lamictal four months.	Yes, they were and are very helpful. The Keppra, however, brought on severe psychotic reactions (severe hostility, depression and thoughts of suicide: all three of these were rare reactions which the paperwork cautioned users to contact the doctor immediately).	Dilantin: swollen gums, mild fever (about 1 1/2 degrees) Keppra: severe psychotic reactions (see above) Lamictal: none so far
Tegretol (carbamazapin) 200 mg 3x a day Lamictal (lamotrigine) 100 mg 5x a day	Will be taking them forever.	I am seizure free with this medication.	Sleepiness, fatigue, forgetfulness, some loss of coordination at the beginning. The forgetfulness persists, other symptoms have faded.

Number responding = 11 / percent responding = 8% of total respondents (143).

Page 22. III. Associated Symptoms (page 1 of 4) cont.: Seizures
6. Comments for Seizures:

Comments (7)
They happened only when I was sleeping, about every other month. My parents seemed to think that they would happen when I was overly tired or stressed.
I am always told they do not know if they are PRS related, same with migraines. How will I know if they are or they are not.
I think he has had all forms of seizures, from very little one to grand mal, from only one side, to big convulsions for a lot of time. All time the seizures affects his capacity of speaking and his right arm and hand.
Still struggling to find the right drug cocktail that will work.
I don't remember the seizure, so that didn't bother me- unfortunately it happened in front of my children though which wasn't good. The part that really has been hard was the loss of my driving privelege for 6 months, and not being able to work.
Grand Mal seizures out of the blue, in my sleep at 44.
All kinds, including the psuedo, eventually her body reacted to any problem particulalry fevers with seizure activity.

Number responding = 7 / percent responding = 5% of total respondents (143).

Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for a consultation with one's personal physician. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.

As a support group, The Romberg's Connection is unable to offer medical advice to anyone.

Throughout this survey, when we use the term "Rombergs" or "Romberg" we are referring to: "Parry Romberg", "Parry Rombergs", "Parry Romberg Syndrome" and "PRS".

This is an unscientific survey designed to gather information from those who must deal with Rombergs on a daily basis.