Idiopathic intracranial hypertension

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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.
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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
15
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
8
Tried for
pain (7) anxious mood (1)
Treatment name(s)

(Topamax)
Type
Prescription Drug
How many have tried
7
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
4
Tried for
pain (4)
Type
Surgery
How many have tried
4
Treatment name(s)

(Xanax)
Type
Prescription Drug
How many have tried
3
Tried for
anxious mood (3)
Treatment name(s)

(Pamelor)
Type
Prescription Drug
How many have tried
3
Tried for
pain (3)
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
3
Tried for
pain (3) headaches (2)
Treatment name(s)

(Tylenol)
Type
Over the Counter Drug
How many have tried
2
Tried for
pain (2)
Treatment name(s)

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

Data from patients with idiopathic intracranial hypertension, who reported starting treatments within the last 5 years.
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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 (7 evaluations)
Side effects
decreased appetite feet tingling 13 more
Total evaluations
7
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (6 evaluations)
Side effects
burning sensation sleepiness
Total evaluations
6
Tried for
pain (7) anxious mood (1)
Treatment name(s)

(Topamax)
Perceived effectiveness
for idiopathic intracranial hypertension (4 evaluations)
Side effects
brain fog change in taste 15 more
Total evaluations
4
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (4 evaluations)
Side effects
drowsiness itching
Total evaluations
4
Tried for
pain (4)
Perceived effectiveness
for idiopathic intracranial hypertension (1 evaluation)
Side effects
Hospitalization
Total evaluations
1
Treatment name(s)

(Xanax)
Perceived effectiveness
for anxious mood (3 evaluations)
Side effects
tiredness
Total evaluations
3
Tried for
anxious mood (3)
Treatment name(s)

(Pamelor)
Perceived effectiveness
for pain (2 evaluations)
Side effects
feeling hot/overheating
Total evaluations
2
Tried for
pain (3)
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (1 evaluation)
Side effects
itching
Total evaluations
1
Tried for
pain (3) headaches (2)
Treatment name(s)

(Tylenol)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (2)
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (1 evaluation)
Side effects
dry mouth
Total evaluations
1
Tried for
headaches (1) pain (1)
  • 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.
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Who has idiopathic intracranial hypertension on PatientsLikeMe?


Age
Age Proportion # of patients
<20 16
20s 71
30s 160
40s 184
50s 91
60s 26
70+ 4
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 57
20-29 years 90
30-39 years 86
40-49 years 24
50-59 years 7
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 36
Female 527

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 323
Not Diagnosed 12

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