Please tell me all about Topamax

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Thanks. I think he's actually a very good neurologist. We're just having a communication challenge right now. Last time it took me refusing meds to get my point through to him. It might take that this time as well.
 
Last edited:
GO to the Pharm Company website and pull up the contraindication sheet for topomax (the link for it is probably on the form some place?) then call the Dr and read it to him. Tell him there is NO DOUBT whatsoever that you are having issues with the med and you woulld prefer to try something else before things get worse. Some doctors work with meds so long they forget all of the side effects and need to be reminded of them. My Dr. did pull me off Tegretol and slap me on Trileptal without ramping up/down because the side-effects were such that he didn't want me to go status again. Your doctor should be taking your complaints seriously.
 
Yo Yo Topamax

Well, go figure. Things have changed since yesterday. Topamax is fickle.

My 9-day migraine is gone (or was it 10 days by yesterday? I lost count) The hyper stuff has calmed down. My blurry eyes have mostly cleared up. I'm wondering if the hyper was due to taking some zyrtec-d for stuffy nose?

The bad part is after going about a week and a half or two pretty much seizure free, last night was awful. I had seizures on and off all night. Then again today, rinse and repeat. I hardly ever have all that happen within 24 hours.

I feel so sad. I was feeling so positive about everything - I thought the seizures were under control and I was getting close to good to go. Which now I see was stupid, because it's pretty early on. I'm only on 25 mg a.m. and 50 m.g. p.m. But I've always been extremely sensitive to drugs, no matter what they are. It's never taken much of anything to elicit change in me.

Why do Topamax's effects change so much? And so fast? Except for one missed dose I've been extremely careful about taking the right dose at the right time every day. The only difference is that yesterday I didn't take my vitamins (including calcium) with the doses, as instructed for the bone density tests I had done yesterday. Per another post, that should have increase absorbtion of the Topamax, which should have controlled seizures better, not made all hell break loose yesterday as it did. It really doesn't make sense to me. Unless this is just some random seizure activity, which I guess just happens. Not everything has to make sense.
 
Last edited:
I don't know how it is for other folks but I have to really be careful with allergy/ cold and sinus meds and my E meds. I was taking zyrtec when trying to cope with the dust storms in kuwait and they kept finding me asleep at my desk...hands paused midstroke on the computer, snoring not so prettily :roll: WHen I managed to be awake my brain felt like it was on hyperdrive. I finally realized what was going on and tossed it out. Pseudophed causes me to bounce of the walls. I can manage one dose of tylenol flu for about 2 days and then I start getting twitchy, hyper, crawling out of my skin icky...if the flu/ cold isn't over by then I suffer for the remainder. You also have to take into consideration the half-life of the meds too...the drugs stay in your system for longer then you may think or it feels like they do.
 
everything you never wanted to know...

...about topamax:

Adult Dosing .
Dosage forms: 25,50,100,200 tabs; 15,25 caps

partial seizures
[monotherapy]
Dose: 200 mg PO bid; Start: 25 mg PO bid x1wk, incr. 50 mg/day qwk until 100 mg PO bid, then incr. 100 mg/day qwk until 200 mg PO bid; Info: doses >400 mg/day rarely more effective, may incr. ADR risk; taper dose gradually to D/C; caps may be swallowed whole or sprinkled on soft food
[adjunct tx]
Dose: 100-200 mg PO bid; Start: 25 mg PO qd-bid x1wk, incr. 25-50 mg/day qwk; Info: doses >400 mg/day rarely more effective, may incr. ADR risk; taper dose gradually to D/C; caps may be swallowed whole or sprinkled on soft food
seizures, primary generalized tonic clonic
[monotherapy]
Dose: 200 mg PO bid; Start: 25 mg PO bid x1wk, incr. 50 mg/day qwk until 100 mg PO bid, then incr. 100 mg/day qwk until 200 mg PO bid; Info: doses >400 mg/day rarely more effective, may incr. ADR risk; taper dose gradually to D/C; caps may be swallowed whole or sprinkled on soft food
[adjunct tx]
Dose: 200 mg PO bid; Start: 25 mg PO qd-bid x1wk, incr. 25-50 mg/day qwk; Info: doses >400 mg/day rarely more effective, may incr. ADR risk; taper dose gradually to D/C; caps may be swallowed whole or sprinkled on soft food
seizures, Lennox-Gastaut
[adjunct tx]
Dose: 100-200 mg PO bid; Start: 25 mg PO qd-bid x1wk, incr. 25-50 mg/day qwk; Info: doses >400 mg/day rarely more effective, may incr. ADR risk; taper dose gradually to D/C; caps may be swallowed whole or sprinkled on soft food
migraine prophylaxis
[50 mg PO bid]
Start: 25 mg PO qhs x1wk, incr. 25 mg/day qwk; Max: 200 mg/day; Info: taper dose gradually to D/C; caps may be swallowed whole or sprinkled on soft food
renal dosing
[adjust dose amount]
CrCl 10-70: decr. dose 50%; CrCl <10: decr. dose 75%; HD: consider supplement
hepatic dosing
[not defined]
hepatic impairment: caution advised
Peds Dosing .
Dosage forms: 25,50,100,200 tabs; 15,25 caps
partial seizures
[monotherapy, >10 yo]
Dose: 200 mg PO bid; Start: 25 mg PO bid x1wk, incr. 50 mg/day qwk until 100 mg PO bid, then incr. 100 mg/day qwk until 200 mg PO bid; Info: taper dose gradually to D/C; caps may be swallowed whole or sprinkled on soft food
[adjunct tx, 2-16 yo]
Dose: 5-9 mg/kg/day PO div bid; Start: 1-3 mg/kg/day PO qhs x1wk, incr. 1-3 mg/kg/day q1-2wk; Info: taper dose gradually to D/C; caps may be swallowed whole or sprinkled on soft food
seizures, primary generalized tonic clonic
[monotherapy, >10 yo]
Dose: 200 mg PO bid; Start: 25 mg PO bid x1wk, incr. 50 mg/day qwk until 100 mg PO bid, then incr. 100 mg/day qwk until 200 mg PO bid; Info: taper dose gradually to D/C; caps may be swallowed whole or sprinkled on soft food
[adjunct tx, 2-16 yo]
Dose: 5-9 mg/kg/day PO div bid; Start: 1-3 mg/kg/day PO qhs x1wk, incr. 1-3 mg/kg/day q1-2wk; Info: taper dose gradually to D/C; caps may be swallowed whole or sprinkled on soft food
seizures, Lennox-Gastaut
[adjunct tx, >2 yo]
Dose: 5-9 mg/kg/day PO div bid; Start: 1-3 mg/kg/day PO qhs x1wk, incr. 1-3 mg/kg/day q1-2wk; Info: taper dose gradually to D/C; caps may be swallowed whole or sprinkled on soft food
renal dosing
[see Adult Dosing]
renal impairment: dose adjustment may be required although specific pediatric dosing adjustments not defined; see adult renal dosing for guidance
hepatic dosing
[not defined]
hepatic impairment: caution advised

Contraindications/Cautions .
hypersens. to drug/class/compon.
caution if renal impairment
caution if hepatic impairment
caution if nephrolithiasis hx
caution if dehydration
caution if diarrhea
caution if respiratory dz, severe
caution if surgery
caution if ketogenic diet
caution if congenital metabolic disorders
caution if valproic acid use
caution if status epilepticus
caution if depression or hx
caution if pregnancy 1st trimester
avoid abrupt withdrawal

Drug Interactions .
Avoid/Use Alternative
carbonic anhydrase inhibitors, systemic
contraceptives, oral combo
contraceptives, other combo
pazopanib
sunitinib
tolvaptan
Monitor/Modify Tx
ACE inhibitor/ thiazide combos
amlodipine/ valsartan/ hydrochlorothiazide
ARB/ thiazide combos
bisoprolol/ hydrochlorothiazide
cyclosporine
diuretics, potassium-sparing/ thiazide combos
hydrochlorothiazide
hydrochlorothiazide/ metoprolol
hydrochlorothiazide/ propranolol
hydrochlorothiazide/ timolol
lithium
metformins
phenytoins
pioglitazone
pioglitazone/ glimepiride
sirolimus
sitagliptin/ metformin
tacrolimus
valproic acid derivatives
warfarin
Caution Advised
acetaminophen/ butalbital
acetaminophen/ caffeine/ CNS depressant combos
acetaminophen/ opiate combos
acetaminophen/ propoxyphene
acetaminophen/ tramadol
aldesleukin
antidepressants, other
antihistamine/ decongestant combos
antihistamines, sedating
antipsychotics
aspirin/ caffeine/ CNS depressant combos
aspirin/ carisoprodol
aspirin/ opiate combos
azelastine nasal
barbiturates
bortezomib
BZDs, all
calendula
cannabinoids
capsicum
carbamazepine
central alpha 2 agonists
cetirizine
chamomile, German
chlorpheniramine/ hydrocodone
colchicine
conivaptan
corticosteroids, systemic
dantrolene
darifenacin
dexmedetomidine
docetaxel
droperidol
eletriptan
ethanol
ethosuximide
etomidate
ginseng, Siberian
goldenseal
gotu kola
hawthorn
hydrocodone/ ibuprofen
ibuprofen/ oxycodone
inhaled anesthetics
irinotecan
kava
ketamine
lapatinib
lemon balm
levocetirizine
levonorgestrel
meprobamate
methadone
metoclopramide
mitotane
morphine liposomal
muscle relaxants
olanzapine/ fluoxetine
opiate antagonists
opiates
oxcarbazepine
passionflower
phenobarbital/ hyoscyamine/ atropine/ scopolamine
phenothiazines
pimozide
pramipexole
pregabalin
promethazine/ codeine
propofol
propoxyphene
repaglinide
rifampins
ropinirole
rotigotine transdermal
rufinamide
sedative/ hypnotics
sildenafil
sodium oxybate
tadalafil
tapentadol
temsirolimus
tetrabenazine
thalidomide
thiotepa
tiagabine
tramadol
tricyclic antidepressants
vardenafil
ziconotide intrathecal
zonisamide
Adverse Reactions .
Serious Reactions
metabolic acidosis, severe
nephrolithiasis
osteomalacia
osteoporosis
growth suppression (peds)
myopia, acute
maculopathy
glaucoma, secondary angle-closure
oligohidrosis
hyperthermia
diabetes mellitus
leukopenia
anemia
psychosis
suicidality
skin rxns, severe
hepatotoxicity, incl. fatal
pancreatitis
DVT
pulmonary embolism
Common Reactions
metabolic acidosis
dizziness
somnolence
fatigue
nervousness
psychomotor slowing
paresthesias
impaired memory
language problems
ataxia
speech disturbance
anorexia
nystagmus
nausea
depression
concentration difficulty
confusion
diarrhea
diplopia
mood disturbances
tremor
taste changes
weight loss
abdominal pain
abnormal vision
insomnia
anxiety

Safety/Monitoring .
Pregnancy: C, see Contraind/Caut.

Lactation: Safety Unknown

Monitoring Parameters
Cr at baseline; bicarbonate at baseline, then periodically; s/sx depression, behavior changes, suicidality

Look/Sound-Alike Drug Names
[from www.usp.org]


Topamax confused with: Protonix; Sporanox; Tapazole; Tegretol; Tofranil; topiramate; Toprol-XL; trazodone


topiramate confused with: Topamax; Toprol-XL; torsemide

Pharmacology .
Metabolism: liver minimally; CYP450: 2C19 (weak) inhibitor; 3A4 (weak) inducer

Excretion: urine 70% (primarily unchanged); Half-life: 21h

Subclass: Seizure Disorders; Migraine/Headache
 
...and more...


Mechanism of Action
exact mechanism of action unknown

Manufacturer/Pricing .
Manufacturer: Ortho-McNeil-Janssen Pharmaceuticals, Inc.

DEA/FDA: Rx

Approximate Retail Price
from www.drugstore.com

tablet:

25 mg (60 ea): $169.58
50 mg (60 ea): $319.71
100 mg (60 ea): $451.50
200 mg (60 ea): $525.95

Patient Education
Generic Name: topiramate
Pronounced: toe PYRE a mate
Brand Names: Topamax, Topamax Sprinkle
What is the most important information I should know about topiramate?
Seek emergency medical attention if you have a sudden change in vision and pain around or behind the eyes. These may be early signs of a serious side effect of topiramate.

Do not stop taking topiramate without first talking to your doctor, even if you feel better. You may have increased seizures if you stop taking topiramate suddenly. You will need to use less and less before you stop the medication completely.

Contact your doctor if your seizures get worse or you have them more often while taking topiramate.

You may have thoughts about suicide while taking this medication. Your doctor will need to check you at regular visits. Do not miss any scheduled appointments. [Black box warning]

Call your doctor at once if you have any new or worsening symptoms such as: mood or behavior changes, depression, anxiety, or if you feel agitated, hostile, restless, hyperactive (mentally or physically), or have thoughts about suicide or hurting yourself.

Carry an ID card or wear a medical alert bracelet stating that you are taking topiramate, in case of emergency. Any doctor, dentist, or emergency medical care provider who treats you should know that you are taking a seizure medication.

Topiramate can cause side effects that may impair your vision or reactions. Be careful if you drive or do anything that requires you to be alert and able to see clearly.

Avoid drinking alcohol. It can increase some of the side effects of topiramate, and can also increase the risk of a seizure.

Ketogenic or "ketosis" diets that are high in protein and low in carbohydrates can increase the risk of kidney stones. Avoid the use of such diets while you are taking topiramate.

What is topiramate?
Topiramate is a seizure medication, also called an anticonvulsant.

Topiramate is used alone or in combination with other medications to prevent seizures in adults and children who are at least 2 years old.

Topiramate is also used to prevent migraine headaches. Topiramate will only prevent migraine headaches or reduce the number of attacks. It will not treat a headache that has already begun.

Topiramate may also be used for other purposes not listed in this medication guide.

What should I discuss with my healthcare provider before taking topiramate?
Do not use this medication if you are allergic to topiramate.

Before taking topiramate, tell your doctor if you are allergic to any drugs, or if you have:

kidney disease or a history of kidney stones;
liver disease;
glaucoma;
asthma, emphysema, or bronchitis; or
if you have recently had surgery.
FDA pregnancy category C. This medication may be harmful to an unborn baby. Tell your doctor if you are pregnant or plan to become pregnant during treatment.

You may have thoughts about suicide while taking this medication. Tell your doctor if you have new or worsening depression or suicidal thoughts during the first several months of treatment, or whenever your dose is changed.

Your family or other caregivers should also be alert to changes in your mood or symptoms. Your doctor will need to check you at regular visits. Do not miss any scheduled appointments.

Topiramate can make birth control pills less effective. Talk with your doctor about other forms of birth control if you are trying to prevent pregnancy while taking topiramate.

It is not known whether topiramate passes into breast milk or if it could harm a nursing baby. Do not use this medication without telling your doctor if you are breast-feeding a baby.

How should I take topiramate?
Take this medication exactly as it was prescribed for you. Do not take the medication in larger amounts, or take it for longer than recommended by your doctor. Follow the directions on your prescription label. Your doctor may occasionally change your dose to make sure you get the best results from this medication.

Topiramate can be taken with or without food.

Take the medicine with a full glass of water.

The topiramate tablet should be swallowed whole. It has a bitter taste when chewed or broken.

To make the topiramate capsule easier to swallow, you may open the capsule and sprinkle the medicine into a spoonful of applesauce, custard, ice cream, oatmeal, pudding, or yogurt. Swallow this mixture right away without chewing. Do not save the mixture for later use.

To be sure this medication is not causing harmful effects, your blood will need to be tested on a regular basis. Your kidney or liver function may also need to be tested. Do not miss any scheduled visits to your doctor.

If you need to have any type of surgery, tell the surgeon ahead of time that you are using topiramate. You may need to stop using the medicine for a short time.

Do not stop taking topiramate without first talking to your doctor, even if you feel better. You may have increased seizures if you stop taking topiramate suddenly. You will need to use less and less before you stop the medication completely.

Contact your doctor if your seizures get worse or you have them more often while taking topiramate.

Carry an ID card or wear a medical alert bracelet stating that you are taking topiramate, in case of emergency. Any doctor, dentist, or emergency medical care provider who treats you should know that you are taking a seizure medication.

Drink extra fluids each day while you are taking topiramate. This will lower your risk of having kidney stones or an electrolyte imbalance. Vomiting or diarrhea can lead to dehydration and cause an electrolyte imbalance. Call your doctor if you have ongoing vomiting or diarrhea while taking topiramate.

Store topiramate at room temperature away from moisture and heat.

What happens if I miss a dose?
Take the missed dose as soon as you remember. If it is almost time for your next dose, skip the missed dose and take the medicine at your next regularly scheduled time. Do not take extra medicine to make up the missed dose.

What happens if I overdose?
Seek emergency medical treatment if you think you have used too much of this medicine.

Overdose symptoms may include drowsiness, dizziness, agitation or depression, blurred vision, problems with speech or balance, stomach pain, chest pain, fast or pounding heartbeats, feeling light-headed, fainting, and seizure (convulsions).

What should I avoid while taking topiramate?
Topiramate can cause side effects that may impair your vision or reactions. Be careful if you drive or do anything that requires you to be alert and able to see clearly.

Avoid drinking alcohol. It can increase some of the side effects of topiramate, and can also increase the risk of a seizure.

Cold or allergy medicine, narcotic pain medicine, sleeping pills, muscle relaxers, and medicine for seizures, depression or anxiety can add to sleepiness caused by topiramate. Tell your doctor if you regularly use any of these other medicines.

Ketogenic or "ketosis" diets that are high in protein and low in carbohydrates can increase the risk of kidney stones. Avoid the use of such diets while you are taking topiramate.

Avoid becoming overheated or dehydrated during exercise and in hot weather. Drink extra fluids in these situations.

What are the possible side effects of topiramate?
Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

Call your doctor at once if you have any new or worsening symptoms such as: mood or behavior changes, depression, anxiety, or if you feel agitated, hostile, restless, hyperactive (mentally or physically), or have thoughts about suicide or hurting yourself.

Stop taking topiramate and call your doctor at once if you have any of these serious side effects:

sudden vision loss, pain around or behind your eyes;
dry mouth, increased thirst, confusion, drowsiness, decreased sweating, increased body temperature, and hot, dry skin,
nausea, vomiting, increased urination, muscle pain or weakness, fast heart rate, feeling light-headed, fainting, or seizure (convulsions); or
severe pain in your side or lower back, painful or difficult urination.
Less serious side effects may include:

slowed thinking, memory problems, trouble concentrating;
problems with speech or balance;
numbness or tingling;
sleep problems (insomnia);
tired feeling;
headache, dizziness; or
loss of appetite, weight loss.
This is not a complete list of side effects and others may occur. Tell your doctor about any unusual or bothersome side effect. You may report side effects to FDA at 1-800-FDA-1088.

What other drugs will affect topiramate?
Before taking topiramate, tell your doctor if you are taking any of the following medicines:

amitriptyline (Elavil, Etrafon);
atropine (Donnatal, and others);
benztropine (Cogentin);
glycopyrrolate (Robinul);
hydrochlorothiazide (HCTZ, HydroDiuril, Hyzaar, Lopressor, Vasoretic, Zestoretic);
methscopolamine (Pamine) or scopolamine (Transderm-Scop);
risperidone (Risperdal);
bladder or urinary medications such as darifenacin (Enablex), oxybutynin (Ditropan, Oxytrol), tolterodine (Detrol), or solifenacin (Vesicare);
bronchodilators such as ipratropium (Atrovent) or tiotropium (Spiriva);
diabetes medicine you take by mouth, such as pioglitazone (Actos) or metformin (Actoplus Met, Avandamet, Glucophage, Fortamet);
glaucoma medications such as acetazolamide (Diamox), methazolamide (Neptazane), or dichlorphenamide (Daranide);
irritable bowel medications such as dicyclomine (Bentyl), hyoscyamine (Anaspaz, Cystospaz, Levsin, and others), propantheline (Pro-Banthine); or
other seizure medications such as carbamazepine (Carbatrol, Tegretol), lamotrigine (Lamictal), phenytoin (Dilantin), or valproic acid (Depakote, Depakene).
This list is not complete and there may be other drugs that can interact with topiramate. Tell your doctor about all the prescription and over-the-counter medications you use. This includes vitamins, minerals, herbal products, and drugs prescribed by other doctors. Do not start using a new medication without telling your doctor.

Where can I get more information?
Your pharmacist can provide more information about topiramate.



As for my personal experience, it has decreased my appetite and I have a hard time drinking carbonated beverages. I can't attribute much else to it because of the brain injuries - many of topamax's side effects are also brain injury symptoms, so it is hard to distinguish between what is the medication and what is the injury. Sorry.
 
Thanks, everybody. Turns out it was a side effect of the Topamax.

Well, this is now my brain off topamax. At least it will be soon. I was on such a low dose the doc took me off cold turkey. The half life is around 20 hours so by Monday I should be mostly clear. I should be feeling better soon.

These drugs suck. The seizures suck worse. Sort of a conundrum of suckiness.
 
I agreed whole-heartedly! When talking with my BF I said it was a quality of life vers quality of life issue. I just had a seizure Friday, hoping its due to the switch over of meds, now its the wait and see if any more happen
 
I don't know much about Topomax, but I'm taking Topomax because it is said to have control the postictal period. My postictal period last between 15 - 30 minutes! Lots of crying and screaming like someone just died.
I also have side effects on this drug aswell. Dizziness and my eyes are like rolling up into the back of my head. Simular effects to my Lamictal once, when the dosage was too high.

Not trying to change the topic, but may I just squeeze in question? I heard someone in here say that Topomax causes memory loss, maybe I missheard, but is it true if I heard right?
 
one of topamax's "less serious" side effects is trouble with memory, yes.

If you are having serious and significant vision trouble on topamax, especially in the first couple weeks to a month of starting on it, this is a fairly serious side effect (though one that effects a very tiny percentage of patients) that should be reported to your doctor at once. If your doctor gives you trouble over it, then go to the ER - vision trouble with topamax can be halted and possibly reversed if caught soon enough but if allowed to continue, it can become permanent. Vision troubles are also considered (generally, but not always - it depends on the situation) to be a medical emergency in many situations.
 
Ok, but that eye rolling side effected is only temporary. Last about an hour.

How bad is the memory loss? Will it really effect me badly?
 
I think the memory loss depends on the individual. I consider the memory loss I have more annoying and frustrating than anything. Little things mostly...yesterday I argued with my husband that it was Tuesday. I couldn't be swayed so he had to prove to me it wasn't. So now, I have no idea what happened to Monday. I've always had bad time-sense...now it is worse.
 
I was still ramping up on Topamax, but I had almost zero short term memory on it. I couldn't remember a list of 2 things. I started carrying around a little pad and pencil with me, but I kept misplacing it. The doc said it would probably get better over time. Due to other side effects I was taken off the Topamax, so I never found out. It also affected my ability to think through problems, or even sort through information. It made me into a bump on a log. I start on the new one today (lamictal). Let's hope that's better.
 
I just got back from the store...I know I have forgotten something, just not sure what it is. At least this time I KNOW it wasn't toilet paper :paperbag:
 
Topamax messed with my meory and thinking at first, but after a few months, it settled down and wasn't too bad. Took a little while for my body to adjust, but that was all, really.

Most of the issues I have now are from the brain injury crap and not the drugs (or at least not the topamax). *shrug* I just carry a little pad of paper everywhere and my desk is covered in sticky notes (whic hdrives me crazy because I'm a neat freak but we do what we gotta do)
 
@ Endlesssea:

I'm on Lamictal and the only side effect I had is when I was on a dose too high. It was a nightmare.
Maybe 5-10 minutes after taking it, I would become nauseous, vomited, rolling eyes, and unstable walking very hard to walk without falling or bumping into something.

But when they reduced the amount, everything was fine. The only "side effect" I have is when the pill rubs against my tongue(it's a very chalky pill), it leaves a horrible bitter taste on my tongue and it can last for hours. Ick!
 
Hey, Stinkpot. Thanks for the heads up on the bitter. I'll be very, very careful. Ick.
 
Back
Top Bottom