PatientsLikeMe : Carbamazepine Treatment Report

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What is Carbamazepine?

Carbamazepine is an anticonvulsant used to treat partial and mixed seizure patterns, generalized tonic-clonic seizures and trigeminal neuralgia. Off label it is used to treat resistant schizophrenia, alcohol withdrawal, restless leg syndrome and post traumatic stress disorders.

Reasons taken & Efficacy

Reasons and Efficacy
Reasons taken	# of patients	# of patients evaluated by
Treat my mood condition(s)	49	11
Other	37	7
Pain	30	2
Trigeminal neuralgia	23	4
Bipolar Disorder	18	6
Stiffness/Spasticity	17	3
Nerve pain (neuropathic pain)	7	3
Numbness, tingling, pins & needles (paresthesia)	5	1
Bipolar, rapid cycling	5	2
Seizures	4	1
Headaches	4	2
Slow my MS progress	3	0
Tonic spasms	3	2
Don't know	3	0
Mood swings	3	0
Epilepsy	2	1
Pain and stiffness, feet	2	0
all of them i think	2	0
Seizures (grand mal/tonic-clonic)	2	2
Schizophrenia	1	1
Shocklike spasms, tingling	1	0
Depression with anxiety	1	1
To help with RSD/CRPS Pain and Nerve Pains etc	1	0
seizures when stopping treatment	1	1
twitches and jerks	1	0
Severe tingling numbness burning in my feet and hands	1	0
dizziness like jet lag, vagueness in my head with increasing intensity.	1	0
Depression	1	0
anticunvulsant( neck muscles)	1	0
Persistent Migraine Aura without Infarction	1	0
Nerve Pain	1	0
Bi polar	1	0
Buzzing/vibration	1	0
burning skin	1	0
Cramps	1	0
disease-related symptoms	1	0
MS Seizures	1	0
Balance problems	1	0
Stop tonic spasms	1	0
Facial Nerve Pain	1	1
Spasms	1	0
Slow my ALS progress	1	1
epileptic seizures	1	1
tingling in limbs	1	0
eye twitching	1	0
seizure disorder	1	0

See all 46 reasons taken ▼

See all 195 patients currently taking Carbamazepine

Mouse over the table for more information

Side Effects

Side effects as an overall problem

Severe	7	15%
Moderate	12	25%
Mild	12	25%
None	17	35%

Most commonly reported side effects

Increased fatigue	13	27%
Sleepiness	10	21%
Dizziness	8	17%
Constipation	7	15%
Mood swings	3	6%
Double vision (diplopia)	2	4%
Increased Hunger	2	4%
Continual Headaches	2	4%
Irritability	2	4%
sluggish	2	4%
Vivid dreams	1	2%
Mouth sores/ulcers	1	2%
Migraine Headaches	1	2%
Tremors	1	2%
dry mouth	1	2%
hallucinations	1	2%
hair loss	1	2%
I get awake instead of tired	1	2%
messed with thyroid	1	2%
tiredness	1	2%
Imbalance when walking	1	2%
drunk feeling	1	2%
Nausea/Vomiting	1	2%
swelling of throat and neck	1	2%
can't stay awake	1	2%
Word finding difficulty	1	2%
Difficulty breathing at night	1	2%
working became worse	1	2%
hyper/not hyper/hyper	1	2%
Abdominal pressure	1	2%
neck stiffness/trouble turning neck	1	2%
Cold sores (fever blisters)	1	2%
loss of fine motor skills	1	2%
If I don't take as directed, I get manic	1	2%
lowered INR rates	1	2%
Depression	1	2%

Mild
Moderate
Severe

See all 36 reported side effects ▼

Dosages

Top 10 dosages based on patients currently taking Carbamazepine. See all 29 dosages ►

100 mg/5 mL daily	200 mg all the time (24/7)	200mg as needed	400 mg as needed	400mg as needed	daily	1 mg daily	2 tbs. daily	40 mg daily	100 mg/5 mL daily	100 mg daily	200 mg daily	2 x 100 mg/5 mL daily	300 mg daily	3 x 100 mg/5 mL daily	400 daily	400 mg daily	500 mg daily	600 mg daily	6 x 100 mg/5 mL daily	700 mg daily	750 mg daily	800 mg daily	900 mg daily	1000 mg daily	1200 mg daily	1400 mg daily	1600 mg daily	1700 mg daily
1	1	1	1	1	6	1	1	1	1	14	31	2	9	2	1	46	2	24	1	1	1	26	4	4	10	1	1	1

Stop Reasons

Why Patients Stopped Taking Carbamazepine (multiple reasons could be selected)
Reason	# Patients	Percentage of patients
Doctor's advice	25	34%
Side effects too severe	25	34%
Did not seem to work	17	23%
Other	14	19%
Course of treatment ended	4	5%
Not indicated	3	4%
Personal research	2	3%
Expense	1	1%

See all 71 patients who’ve stopped taking Carbamazepine

Duration See details about how long patients take this treatment ▼

Currently Taking Carbamazepine

0-1 month	1-3 months	3-6 months	6 months-1year	1-2 years	2 years or more
4	9	17	22	22	44

Stopped Taking Carbamazepine

0-1 month	1-3 months	3-6 months	6 months-1year	1-2 years	2 years or more
15	13	12	6	10	15

Adherence, Burden & Cost See details from patient evaluations ▼

Adherence

Taking treatment as prescribed

Always	41	85%
Usually	7	15%
Sometimes	0	0%
Never	0	0%

Burden

Difficulty being on treatment

Very	4	8%
Somewhat	8	17%
A little	6	13%
Not at all	30	63%

Cost

Paid out of pocket

$200+	0	0%
$100-199	0	0%
$50-99	2	4%
$25-49	6	13%
< $25	23	48%

See more information, including instructions, precautions, side effects, and interactions.

Patient Evaluations

See all 48 patient evaluations

JesswithMS

Sex: F

Sensation: Moderate

Overall: Mild

Cognition: mild

Vision: moderate

Speech: mild

Swallowing: moderate

Upper limb: mild

Walking: moderate

See profile
JesswithMS

800 mg daily

since Apr 30, 2003
Efficacy Moderate for Nerve pain (neuropathic pain)
Side Effects Moderate
Advice/Tips Take medication as prescribed. If you need to stop medication make sure you wean yourself off of the drug according to your doctor due to causing very sever... See full evaluation

spider

Sex: M

Mouth/throat: mild

Arms: severe

Chest: none

Legs: moderate

See profile
spider

100 mg/5 mL daily

since Aug 23, 2008
Efficacy Slight for Slow my ALS progress
Side Effects None
See full evaluation

beach73

Sex: M

Depression: 2

Emotional: 0

Compulsion: 0

Anxiety: 1

Mania: 0

Physical: 1

External Stress: Moderate

38 M

Function: Moderate

Distress: Low

See profile
beach73

800 mg daily

since Oct 30, 2008
Efficacy Major for Epilepsy
Side Effects None
See full evaluation