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
17
Type
Surgery
How many have tried
8
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
5
Tried for
pain (4) anxious mood (1)
Treatment name(s)

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

(Elavil)
Type
Prescription Drug
How many have tried
4
Tried for
pain (3) headaches (1)
Treatment name(s)

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

(Ultram)
Type
Prescription Drug
How many have tried
4
Tried for
pain (4) headaches (1)
1 more
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
3
Tried for
depressed mood (2) anxious mood (1)
Treatment name(s)

(Lasix)
Type
Prescription Drug
How many have tried
3
Treatment name(s)

(Xanax)
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.
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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 (11 evaluations)
Side effects
fatigue nausea 15 more
Total evaluations
11
Perceived effectiveness
for idiopathic intracranial hypertension (2 evaluations)
Side effects
Hospitalization shunt malfunction
Total evaluations
2
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (3 evaluations)
Side effects
Total evaluations
3
Tried for
pain (4) anxious mood (1)
Treatment name(s)

(Topamax)
Perceived effectiveness
for idiopathic intracranial hypertension (2 evaluations)
Side effects
anxiety and frustration feet tingling 2 more
Total evaluations
3
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (2 evaluations)
Side effects
blurry vision dry mouth 3 more
Total evaluations
4
Tried for
pain (3) headaches (1)
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (2 evaluations)
Side effects
abdominal cramps itching
Total evaluations
2
Tried for
pain (4)
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (1 evaluation)
Side effects
itching
Total evaluations
1
Tried for
pain (4) headaches (1)
1 more
Treatment name(s)

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

(Lasix)
Perceived effectiveness
for idiopathic intracranial hypertension (1 evaluation)
Side effects
frequent urination
Total evaluations
1
Treatment name(s)

(Xanax)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
Total evaluations
1
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.
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Who has idiopathic intracranial hypertension on PatientsLikeMe?


Age
Age Proportion # of patients
<20 18
20s 55
30s 121
40s 134
50s 65
60s 18
70+ 1
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 54
20-29 years 86
30-39 years 78
40-49 years 24
50-59 years 7
60-69 years 0
70+ years 0

Sex

Distribution of sex

94% Female
6% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 283
Not Diagnosed 12

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