Idiopathic intracranial hypertension

We’re all in this for good.

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 idiopathic intracranial hypertension?

Idiopathic intracranial hypertension is a neurological condition that causes increased intracranial pressure without the presence of a tumor or deformity to explain the increased pressure in cerebral spinal fluid.

Common symptoms reported by people with idiopathic intracranial hypertension

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.
Last updated:

Treatments taken by people with idiopathic intracranial hypertension

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

(Diamox)
Type
Prescription Drug
How many have tried
18
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
6
Tried for
pain (5) anxious mood (1)
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
5
Tried for
pain (5)
Treatment name(s)

(Topamax)
Type
Prescription Drug
How many have tried
5
Type
Surgery
How many have tried
4
Treatment name(s)

(Xanax)
Type
Prescription Drug
How many have tried
2
Tried for
anxious mood (2)
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
2
Tried for
headaches (1) pain (1)
Treatment name(s)

(Abilify)
Type
Prescription Drug
How many have tried
2
Tried for
depressed mood (2)
Treatment name(s)

(BuSpar)
Type
Prescription Drug
How many have tried
2
Tried for
depressed mood (2) anxious mood (1)
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
2
Tried for
anxious mood (2)

Data from patients with idiopathic intracranial hypertension, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with idiopathic intracranial hypertension

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

(Diamox)
Perceived effectiveness
for idiopathic intracranial hypertension (12 evaluations)
Side effects
decreased appetite fatigue 16 more
Total evaluations
12
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (4 evaluations)
Side effects
burning sensation
Total evaluations
4
Tried for
pain (5) anxious mood (1)
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (5 evaluations)
Side effects
abdominal cramps drowsiness 1 more
Total evaluations
5
Tried for
pain (5)
Treatment name(s)

(Topamax)
Perceived effectiveness
for idiopathic intracranial hypertension (1 evaluation)
Side effects
memory problems
Total evaluations
2
Perceived effectiveness
for idiopathic intracranial hypertension (1 evaluation)
Side effects
Hospitalization
Total evaluations
1
Treatment name(s)

(Xanax)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
anxious mood (2)
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (1 evaluation)
Side effects
dry mouth
Total evaluations
1
Tried for
headaches (1) pain (1)
Treatment name(s)

(Abilify)
Perceived effectiveness
for depressed mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
depressed mood (2)
Treatment name(s)

(BuSpar)
Perceived effectiveness
for depressed mood (1 evaluation)
Side effects
anxious mood
Total evaluations
1
Tried for
depressed mood (2) anxious mood (1)
Treatment name(s)

(Klonopin)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
anxious mood (2)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with idiopathic intracranial hypertension, who reported starting treatments within the last 5 years.
Last updated:

Who has idiopathic intracranial hypertension on PatientsLikeMe?


Age
Age Proportion # of patients
<20 15
20s 58
30s 139
40s 151
50s 76
60s 20
70+ 3
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 55
20-29 years 89
30-39 years 84
40-49 years 24
50-59 years 7
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 28
Female 439

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 315
Not Diagnosed 13

These charts show data from idiopathic intracranial hypertension patients who have completed their condition history
Last updated: