Instructions for Use of Anti-Seizure Medications After Brain Injury

Drug Name: Commonly known as an ASMs.

Uses:  To treat seizures after brain injury (e.g., brain bleeds, brain hemorrhages and brain surgery to address aforementioned)

Before Using This Medicine Tell Your Doctor:

  • If you have an allergy to any part of this drug.
  • If you are allergic to any drugs like this one, any other drugs, foods or other substances.
  • If you have kidney disease or you are breast-feeding.
  • If your personal relationships, like your marriage, are fragile.
  • If your family is still traumatized from your most recent, and possibly first seizure, when they found you naked and convulsing on the bathroom floor.
  • If your family is confused by the events that have recently occurred:

o surviving a brain aneurysm or AVM (arteriovenous malformation),

o slowly recovering from multiple brain surgeries to obliterate the aneurysm or AVM,

o experiencing and nearly dying from the aforementioned and unexpected grand mal seizure that occurred when you thought your body was on the mend.

How to Use This Medicine:

  • Use this drug as ordered by your doctor. Take with or without food at the same time every day even if you are feeling well.
  • Do not miss doses. However if you miss a dose, take the missed dose as soon as you think about it.  If it is close to the time for your next dose, skip the missed dose and go back to your normal time.  
  • Do NOT mention to your spouse that you missed a dose.  He/she may likely panic and rush home immediately to check on you.

o He/she may find you seizing, either alone, or with your young children unattended, because you are unconscious.  OR

o He/she may find you at home tending to your usual activities such as cooking dinner, folding laundry, playing with your children or scrolling through your phone during the quiet five minutes you receive when your children are playing together nicely.

o In either situation  your spouse may remark insensitively to the situation, commenting that you need to set more consistent reminders to take your medication on time.  

o He/she does not like the feeling that you are unwell as it is a reminder of the trauma that you all have already experienced to warrant this medication.  

o It is equally frustrating to your caretaker that he/she rushed out of an important meeting at work to ensure your safety when you are fine this time.  You weren’t fine last time, but this time, you are fine.

  • Again, to gain the most benefit, do not miss doses even if your newly minted brain, secured with titanium plates with screws, is still healing and it is sometimes hard to remember everything. Try to get past the physical and emotional setbacks of all that you have been through and take the medicine regardless.
  • Remember that your caregivers may be tired of thinking about you.  They are physically exhausted from taking care of you, emotionally exhausted from watching you deal with the trauma and tired of talking about how much your hair has grown back from your craniotomy incision site.

Cautions:

  • Even though it may be rare, some people may have very bad and sometimes deadly side effects when taking this drug. Tell your doctor or get medical help right away if you have signs of an allergic reaction. Patients who take this drug may be at a greater risk of having thoughts or actions of suicide. Call the doctor right away if signs like low mood (depression), nervousness, restlessness, grouchiness, panic attacks or changes in mood or actions are new or worse.
  • Even if your symptoms are not extreme, your spouse or partner and family will easily recognize a change in you and they will resent your new behavior, particularly after the trauma that you have all been through previously to arrive at this juncture in your recovery.
  • You will be very short-tempered and will react negatively to most situations.  If you have small children who tend to wear you down, you will lose your patience very quickly.  Some patients have noted a desire toward physical aggression, even though these thoughts or actions have never manifested in the past.
  • To redirect these dangerous thoughts, patients have engaged in more physical activity such as extreme exercise, crying uncontrollably or punching inanimate objects such as nearby machinery (e.g., washing machines, cars, chairs, etc.)  This redirection can present additional risks however, as a rise in blood pressure and over exertion of your brain, already sensitive to over stimulation, may backfire, and cause additional seizures.  
  • If your brain injury has previously caused loss of fine and gross motor function or loss of speech, we do not have record of how to deal with physical or verbal aggression, nor do we have studies on the psychological impact of these deficiencies.  

Some patients choose to seek additional health care providers, such as counselors, psychiatrists, psychologists and mental health specialists, when taking this drug, to find resources to offset the side effects.  In addition to breathing exercises and forms of meditation or conversation, some providers may prescribe medication to offset your behavior and attitude.  Please refer to the “How to Take Anti-Anxiety/Depression Drugs” for further instructions.  These instructions are UNATTACHED.  It is unlikely you will receive a copy of these instructions prior to ordering and paying for these new medications.  Please note some patients report the most common symptom is low libido, which will more than likely impact your already-fragile marriage.

 Neither ASMs or Anti-Anxiety/Depression Drugs are compatible with alcohol, so your family and friends will identify you as “recovering from brain injury, at-risk for seizures, grouchy, tired, and really no fun at all”.

  • Do not stop taking this drug suddenly without calling your doctor. You may have a greater risk of seizures. If you need to stop this drug, you will want to slowly stop it as ordered by your doctor.

Additional Information:

If your symptoms or health problems do not get better or if they become worse, call your doctor. Before your regimen is finalized, many patients report a necessity to increase doses to improve effectiveness, and then decrease doses at the detriment of effectiveness but to tolerate side effects and to ensure that your new and angry personality is suitable as a parent, spouse, child, student and citizen of your community.  The variability of side effects and seizure tolerance will be frustrating for you and your family will find you annoying for the continued trauma that you cause.  This information should not be used to decide whether or not to take this medicine or any other medicine. Only your health care provider has the knowledge to decide which medicines are right for you.

Author Note: The style of writing used in this piece is called a hermit crab essay, which uses one form of writing on the surface to conceal the deeper meaning behind the writing. The author uses a medication use description normally found on a prescription bottle to share her experiences with treatment after brain surgery. 

Click the photo to learn more about the author, Vanessa Garza