What is Phenytoin?

Category: Prescription Drugs

Most popular types: Dilantin Phenytoin EX Dilantin Kapseals Show all

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Phenytoin is an antiarrhythmic and anticonvulsant agent that is used for the management of generalized tonic-clonic (grand mal), complex partial seizures; and for the prevention of seizures following head trauma/neurosurgery. Off label it is used for neuropathic pain.

Reported purpose & perceived effectiveness
Purpose Patients Evaluations Perceived Effectiveness
Epilepsy 546 266
Seizures (grand mal or tonic-clonic) 64 40
Seizures 42 49
Seizures (complex partial) 5 16
Stiffness/Spasticity 3 0
Dravet's syndrome 2 0

Show all 41 reasons taken


  • Major
  • Moderate
  • Slight
  • None
  • Can't tell

Side effects

Side effects as an overall problem

Side effects as an overall problem
Severity Evaluations
Severe 91
Moderate 79
Mild 68
None 70

Commonly reported side effects and conditions associated with Phenytoin

Side effect Patients
Bleeding gums 13
Drowsiness 13
Dizziness 10
Depressed mood 8
Fatigue 8
Gingivitis (gum disease) 7

Show all 195 reported side effects

Dosages

Based on patients currently taking Phenytoin

Dosage Patients
300 mg daily 10
400 mg daily 8
100 mg daily 3
200 mg daily 3
200 mg twice daily 3
100 mg twice daily 2
100 mg three times daily 2
500 mg daily 2
300 mg twice daily 2
4 mg daily 1

See all 16 dosages

Why patients stopped taking Phenytoin

Multiple reasons could be selected

Reason Patients
Doctor's advice 152
Side effects too severe 140
Did not seem to work 123
Other 61
Course of treatment ended 24
Personal research 16
Change in health plan coverage 6
Expense 6
See all 340 patients who’ve stopped taking Phenytoin

Duration

Currently taking Phenytoin

Duration Patients
1 - 6 months 2
6 months - 1 year 1
1 - 2 years 3
2 - 5 years 5
5 - 10 years 6
10 years or more 24

Stopped taking Phenytoin

Duration Patients
Less than 1 month 67
1 - 6 months 52
6 months - 1 year 32
1 - 2 years 31
2 - 5 years 51
5 - 10 years 34
10 years or more 75
Adherence
Adherence Evaluations
Always 256
Usually 36
Sometimes 5
Never taken as prescribed 11
Burden
Burden Evaluations
Very hard to take 30
Somewhat hard to take 34
A little hard to take 43
Not at all hard to take 201
Cost per month
Cost per month Evaluations
$200+ 1
$100-199 1
$50-99 17
$25-49 51
< $25 134
Not specified 104

What people switch to and from

Patients started taking Phenytoin after stopping:

Treatment Patients
Lamotrigine (Lamictal) 6
Levetiracetam (Keppra) 4
Phenobarbital 4
Topiramate (Topamax) 3
Carbamazepine (Tegretol) 2

Show all 11 treatments patients report switching from

Patients stopped taking Phenytoin and switched to:

Treatment Patients
Levetiracetam (Keppra) 10
Lamotrigine (Lamictal) 7
Carbamazepine (Tegretol) 6
Primidone (Mysoline) 2
Topiramate (Topamax) 2

Show all 10 treatments patients report switching to

Last updated:

29 patient evaluations for Phenytoin

225 members have decided to share their profiles only with other members of PatientsLikeMe.

Srs2388
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Srs2388
Data Quality: 1 star
  • Gender: M
  • Age: 29y
  • Duration: ? yrs
Quality of life:
  • Mental: Severe
  • Physical: Severe
2 seizures
19 weeks ago
I am: vb
I have:
Epilepsy

See Srs2388's full Phenytoin history

Jul 1, 2015 (Started Jul 01, 2015)

  • Effectiveness
    Can’t tell (for Epilepsy)
  • Side effects
    Moderate (Depressed mood)
  • Adherence
    Usually
  • Burden
    Very hard to take
Dosage: 100 mg Twice daily

  • 0 helpful marks
Fluff4brains
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Fluff4brains
Data Quality: 1 star
  • Gender: M
  • Age: 50
Condition: Glioblastoma 6 additional condition(s)
Quality of life:
  • Mental: Mild
  • Physical: Moderate
I am: b
I have:
Glioblastoma

See Fluff4brains's full Phenytoin history

Nov 14, 2014 (Started Oct 20, 2014)

  • Effectiveness
    Slight (for Seizures)
  • Side effects
    Moderate (Cognitive confusion, Fuzzy thinking)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily

Nov 13, 2014 (Started Oct 20, 2014)

  • Effectiveness
    Slight (for Seizures)
  • Side effects
    Severe (Cognitive confusion, Fuzzy thinking)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Advice & Tips: On stronger doses, you do feel like your IQ has dropped significantly. I spent an afternoon trying to work out how to switch my watch off Daylight Savings (and failed). You can make very poor and impulsive decisions. A client who didn't know my condition was bugging me for a conference call, and I sent him a selfie from my ICU bed to explain that, no, I can't do a conference call (blush). You can miss out on vital information - it just flies over your head. I wish I could say you feel care free, but you don't because you know you're missing your mental cognition. You need to make notes about EVERYTHING, especially questions for med team. You need to re-read those notes and add further notes. IMHO, you need to get your Phenytoin exit strategy in place as soon as you learn how to say it. The day my dosage halved and we added Keppra was such a joy - I could think again!

  • 0 helpful marks
Cagedbrd
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Cagedbrd
Data Quality: 1 star
  • Gender: F
  • Age: 28
Condition: Systemic Lupus Erythematosus 9 additional condition(s)
Quality of life:
  • Mental: Moderate
  • Physical: Moderate
I am: n
I have:
Systemic Lupus Erythematosus

See Cagedbrd's full Phenytoin history

Jul 21, 2013 (Started Jul 21, 2013)

  • Effectiveness
    None (for Psychogenic Non-epileptic Seizures)
  • Side effects
    Severe (Anaphylaxis)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg One time
Advice & Tips: Allergy anaphylaxis

  • 0 helpful marks
Last updated:
Showing 3 of 29 patient evaluations for Phenytoin