Papilledema

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By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is papilledema?

Papilledema is swelling of the optic disc that is due to elevated pressure inside the skull (intracranial). The swelling usually affects both eyes.

Common symptoms reported by people with papilledema

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
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Treatments taken by people with papilledema

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Diamox)
Type
Prescription Drug
How many have tried
3
Tried for
papilledema (3)
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Duragesic-50)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Lyrica)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)

Data from patients with papilledema, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with papilledema

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Diamox)
Perceived effectiveness
for papilledema (2 evaluations)
Side effects
nausea
Total evaluations
3
Tried for
papilledema (3)
Treatment name(s)

(Elavil)
Perceived effectiveness
No evaluations
Side effects
blurry vision excessive dry mouth 2 more
Total evaluations
2
Tried for
pain (1)
Treatment name(s)

(Duragesic-50)
Perceived effectiveness
for pain (2 evaluations)
Side effects
Total evaluations
2
Tried for
pain (1)
Treatment name(s)

(Norco)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(Lyrica)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with papilledema, who reported starting treatments within the last 5 years.
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Who has papilledema on PatientsLikeMe?


Age
Age Proportion # of patients
<20 3
20s 6
30s 9
40s 9
50s 9
60s 2
70+ 0
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1
20-29 years 7
30-39 years 3
40-49 years 5
50-59 years 0
60-69 years 0
70+ years 0

Sex

Distribution of sex

95% Female
5% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 23
Not Diagnosed 1

These charts show data from papilledema patients who have completed their condition history
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