116 patient evaluations for Topiramate

916 members have decided to share their profiles only with other members of PatientsLikeMe.

catchmeifyacan
9863 thumb
catchmeifyacan
Gender: F
Data Quality: 0 stars
Pain: Some
Fatigue: All
Sleep: All
Stiffness: Most
function: Some
external_stress: Most
Stickman: most
Description:F50y
FM:10y Dx
I have:
Fibromyalgia

See catchmeifyacan's full Topiramate history

Apr 8, 2009 (Started Mar 04, 2009)

  • Effectiveness
    None (for fibromyalgia)
  • Effectiveness
    None (for Nerve pain (neuralgia))
  • Effectiveness
    Slight (for Migraine headaches)
  • Side effects
    Moderate (Sleepiness, Hands tingling, Feet tingling, Brain fog, Tremor in hands, Nausea)
  • Adherence
    Usually
  • Burden
    Very hard to take
Dosage: 75 mg Daily
Advice & Tips: I will ask to quit this because for me it hasn't prevented the migraines enough....ended up at doctor's office yesterday for a shot for one.....and the side effects lost me a month of activity.
Cost: $25-49 monthly
Side effects: Feet tingling, Hands tingling, Tremor in hands, Nausea, Brain fog, Sleepiness

  • 4 helpful marks
dsseak
Portrait default thumb
dsseak
Gender: F
Data Quality: 1 star
Pain: Most
Fatigue: Most
Sleep: Little
Stiffness: All
function: Little
external_stress: Some
Stickman: most
Description:F49y
CFS:8y Dx
FM:8y Dx
I am: b
I have:
Fibromyalgia

See dsseak's full Topiramate history

Mar 1, 2010 (Started Jul 30, 2009)

  • Effectiveness
    None (for fibromyalgia)
  • Side effects
    Severe
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 200 mg Daily
Advice & Tips: Made me very tired and gave me diarrhea.
Cost: < $25 monthly

  • 2 helpful marks
NewportNews
17703 thumb
NewportNews
Data Quality: 0 stars
  • Gender: F
  • Age: 53y
  • Duration: 31 yrs
Quality of life:
  • Mental: Unreported
  • Physical: Unreported
0 seizures
382 weeks ago
I have:
Epilepsy

See NewportNews's full Topiramate history

Oct 27, 2010 (Started Jan 01, 2004)

  • Effectiveness
    Moderate (for epilepsy)
  • Side effects
    Severe (Unexplained itching, Hearing problems, Blurry vision, Weight loss)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 400 mg Daily
Advice & Tips: Hearing loss is becoming more obvious, vision problems are rapidly becoming a problem also. itching of my larger skin areas is an unusual and new problem that could maybe be due to Topamax or the antidepressant Prozac, unsure about this. I have had terrible crying jags and depression over inappropriate issues in the last year or so that was assumed to be due to my aging process, but was recently debunked by a hormonal test. I therefore believe that the Topamax is a more likely suspect.
Cost: < $25 monthly
Side effects: Weight loss, Blurry vision, Hearing problems, Unexplained itching, Unexplained itching

Feb 15, 2010 (Started Jan 01, 2004)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    Moderate (Hearing problems, Blurry vision, Weight loss)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 400 mg Daily
Advice & Tips: The side effects of Topamax are really tough, but not as tough as others, and certainly not as tough as beating the heck out of yourself and frying your brain during a seizure. I never miss a dose, if I do, I could really end up hurting myself. I take it as exactly to the minute as I can, I do the same with all my meds, and for the last several years since I have been doing this, my seizures have been much less invasive into my life. I also NEVER NEVER take generic epilepsy medication. It must be brand always! Generic is NOT the same, no matter who insists that it is. I can take generic on other medication, but generic Topamax allowed me to have 3 months of severe cluster seizures last year.
Cost: < $25 monthly
Side effects: Weight loss, Blurry vision, Hearing problems, Unexplained itching, Unexplained itching

  • 2 helpful marks
Rotisgirl
15121 thumb
Rotisgirl
Data Quality: 0 stars
  • Gender: F
  • Age: 49
Condition: 2 additional condition(s)
Quality of life:
  • Mental: Unreported
  • Physical: Unreported

See Rotisgirl's full Topiramate history

Nov 7, 2009 (Started Nov 05, 2009)

  • Effectiveness
    Major (for fibromyalgia)
  • Side effects
    Mild (Hands tingling, Feet tingling, Word fishing)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: Its a good medications with not many bad side effects. It is easily tolerated. One benefit I have noticed is it makes my skin tingle which I love. It also elevates my mood. It also controls my appetite, now that doesn't happen with everyone, but it does happen with me. What I mean when "controls appetite" I don't get hungry. I forget to eat!
Cost: < $25 monthly
Side effects: Feet tingling, Hands tingling, Word fishing

  • 1 helpful mark
literature lover
17885 thumb
literature lover
Data Quality: 0 stars
  • Gender: F
  • Age: 46y
  • Duration: 11 yrs
Quality of life:
  • Mental: Unreported
  • Physical: Unreported
0 seizures
379 weeks ago
I have:
Epilepsy

See literature lover's full Topiramate history

Feb 19, 2010 (Started Sep 20, 2006)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    Moderate (Memory Loss)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 200 mg Daily
Advice & Tips: I have been taking Topamax since 2007 and I noticed many side effects that I was told about by my Neurologist. First was the tingling in my hands, feet and face. These symptoms went away after I took the medication for over a year. I also noticed a decrease in my number of seizures a year. I also had a decrease in tiredness. With this med you need to get proper sleep, and watch your diet. You can not over exert yourself. Especially in warm weather.. I have had a lot of success on this med and am very happy. I will continue to stay on it as long as I can..
Cost: < $25 monthly
Side effects: Memory Loss

  • 1 helpful mark
fsbiddle
5306 thumb
fsbiddle
Gender: M
Data Quality: 0 stars
Depression: 0
Mania: 0
Emotional: 0
Anxiety: 0
Compulsion: 0
External Stress: Moderate
54 M
Function: High
Distress: Low
I am: vg
I have:
Bipolar II

See fsbiddle's full Topiramate history

Feb 10, 2010 (Started Jun 29, 1998)

  • Effectiveness
    Major (for Treat my mood condition(s))
  • Side effects
    Severe
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 100 mg Daily
Advice & Tips: Topamax was a good new stabilizer for me for about 10 years. In the last two years the side effects were too burdensome for me to continue taking it. I looked and felt drugged on this medication. Other people reported that I had a flat effect in my face looked blank with no expression. I am now taking Zyprexa for my mood stabilizer and for sleep aid.

  • 1 helpful mark
NanaBurr
21662 thumb
NanaBurr
Data Quality: 2 stars
  • Gender: F
  • Age: 46
Condition: Systemic Lupus Erythematosus 12 additional condition(s)
Quality of life:
  • Mental: Mild
  • Physical: Moderate
I am: g
I have:
Systemic Lupus Erythematosus

See NanaBurr's full Topiramate history

May 21, 2010 (Started May 19, 2010)

  • Effectiveness
    Slight (for fibromyalgia)
  • Side effects
    Moderate (Fingers Tingling, Numbness in knee, Nightmares, Numbness in feet, Brain fog, Balance problems, Nausea)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Daily
Advice & Tips: I did a lot of research before starting this medication, so none of the side effects came as as suprise. They are not pleasant, but I am already noting a slight decrese in pain on day 3 and it is my understanding that the side effects will subiside.
Cost: $200+ monthly
Side effects: Nightmares, Fingers Tingling, Numbness in feet, Nausea, Numbness in knee, Balance problems, Brain fog

  • 1 helpful mark
pjoy17
31685 thumb
pjoy17
Data Quality: 0 stars
  • Gender: F
  • Age: 59y
  • Duration: 55 yrs
Quality of life:
  • Mental: None
  • Physical: None
6 seizures
365 weeks ago
I am: g
I have:
Epilepsy

See pjoy17's full Topiramate history

Jun 24, 2010 (Started Jan 19, 2010)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 200 mg Daily
Advice & Tips: I am sleeping so much better than I have ever slept in my life ! I workout better getting better muscle tone, am happier!
Cost: $200+ monthly

  • 1 helpful mark
cantsleep
13104 thumb
cantsleep
Gender: F
Data Quality: 1 star
Pain: All
Fatigue: All
Sleep: All
Stiffness: All
function: Little
external_stress: Most
Stickman: all
Description:F53y
FM:16y Dx
CFS:15y Dx
I am: b
I have:
Fibromyalgia

See cantsleep's full Topiramate history

Mar 1, 2010 (Started Jan 05, 2010)

  • Effectiveness
    Slight (for fibromyalgia)
  • Effectiveness
    Slight (for Depressed mood)
  • Side effects
    Severe
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 25 mg Daily
Advice & Tips: it caused severe dry mouth, I now have a hard time making my own saliva. And it ruined my teeth because of the dry mouth.

  • 1 helpful mark
BrainStorm
24289 thumb
BrainStorm
Data Quality: 2 stars
  • Gender: F
  • Age: 56y
  • Duration: 42 yrs
PRO survey: PRO 3
Quality of life:
  • Mental: Moderate
  • Physical: Mild
4 seizures
210 weeks ago
I am: g
I have:
Epilepsy

See BrainStorm's full Topiramate history

Jun 16, 2011 (Started Jun 14, 2011)

  • Effectiveness
    Moderate (for epilepsy)
  • Side effects
    Mild (Suicidal thoughts or urges, Feeling of heart pounding, Trouble spelling, Suicidal thoughts (free floating), Night cramps in legs and feet, Numbness in hands)
  • Adherence
    Always
  • Burden
    A little hard to take
Advice & Tips: I stopped Topamax (generic) in January when my neuro put me on generic keppra. There has not been any improvement with that drug and I do not like the effects of it. Neuro has started me on Topamax again. 06/14/11 I began taking 1/2 caplet of topamax at bedtime along with my regular dose of 4 dilantin and 2 keppra. Gradually I will build the dose up to 2 tablets of topamax daily with 4 dilantin (as before) and stop the keppra. Wish me luck! My meds are all generic prices.
Cost: < $25 monthly
Side effects: Suicidal thoughts or urges, Feeling of heart pounding, Suicidal thoughts (free floating), Trouble spelling, Numbness in hands, Night cramps in legs and feet

Jan 10, 2011 (Started Jun 14, 2011)

  • Effectiveness
    Moderate (for epilepsy)
  • Side effects
    Moderate (Suicidal thoughts or urges, Feeling of heart pounding, Trouble spelling, Suicidal thoughts (free floating), Night cramps in legs and feet, Numbness in hands)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: Manage: I took Topamax 2x daily. 1 in the morning with food and 1 in the evening with supper. 2. Benefits: It made lose weight. 3. Impact: Learning to adjust to it's side effects.
Side effects: Suicidal thoughts or urges, Feeling of heart pounding, Suicidal thoughts (free floating), Trouble spelling, Numbness in hands, Night cramps in legs and feet

Jun 24, 2010 (Started Jun 14, 2011)

  • Effectiveness
    Can’t tell (for epilepsy)
  • Side effects
    Moderate (Suicidal thoughts or urges, Feeling of heart pounding, Trouble spelling, Suicidal thoughts (free floating), Night cramps in legs and feet, Numbness in hands)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: 1.Manage: Inform and prepare yourself for this drug. If you are experienced with taking medications you may manage well with it. If you are a weak person, you may want to try something else. 2. Benefits: Weight loss and it keeps it off. Please do not use this drug for weight loss!! It might sharpen your cognitive or judgment skills but it's only temporary. Then they may become clouded. 3. Impact: Food flavor may suddenly change. There will be times when you are sleeping that you will awake to your heart pounding in your chest...feeling of impending doom, thoughts of being sicker than you really are and ideas of suicide are side effects you may experience with this drug. Brand name or generic it is a high priced drug.
Side effects: Suicidal thoughts or urges, Feeling of heart pounding, Suicidal thoughts (free floating), Trouble spelling, Numbness in hands, Night cramps in legs and feet

Jun 22, 2010 (Started Jun 14, 2011)

  • Effectiveness
    Can’t tell (for epilepsy)
  • Side effects
    Moderate (Suicidal thoughts or urges, Feeling of heart pounding, Trouble spelling, Suicidal thoughts (free floating), Night cramps in legs and feet, Numbness in hands)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: Topamax helped me drop weight but that's not why I agreed to take it. I wanted to be seizure free! And the spells stopped for 6 months but then they started up again. One must be very careful when using this drug because it has many side effects. I have learned to recognize them and distinguish the difference between me and the drug but the most bothersome and hardest to cope with is the sudden rush of my heart pounding on my chest. It scares me to death. I think it's time for me to get off this drug. Please be careful if you use this drug. It's also very expensive in generic brand too.
Side effects: Suicidal thoughts or urges, Feeling of heart pounding, Suicidal thoughts (free floating), Trouble spelling, Numbness in hands, Night cramps in legs and feet

  • 1 helpful mark
Last updated:
Showing 10 of 116 patient evaluations for Topiramate