Michael J Kutryb, MD  

Specialties: Ophthalmology, Cataract Surgery, glaucoma

Interests: Ophthalmology
Kutryb Eye Institute - Titusville
Titusville, FL
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Worst Topamax Glaucoma Attack Yet

Mar 20, 2010 - 81 comments















side effects



     I have done my best to warm people about the sight threatening side effects from Topamax, but this last week I have seen the worst case scenario up close and personal.  

     This patient was a 65 year-old man on only 25 mg of Topamax a day for headaches.  It took us over 8 hours just to get the eye pressure under 50 (which is still about 3 times normal.)  He was rapidly losing vision from an attack of acute angle closure glaucoma IN BOTH EYES.  That is one of the most significant things that people don't always realize.  In my business it is extraoridinarily rare for an acute, severe problem to happen to both eyes unless there is some sort of terrible industrial accident, explosion or facial trauma.  Topamax, when it causes this extreme side effects, will almost universally affect both eyes.  What is the indicence?  I don't think anyone knows but I'll just throw it out there.  If I make a very gross estimate that there might be 2000 people in my city taking Topamax and I, personally have seen 2 attacks in one year, then that would put the risk at about 1 in 1000.  Please understand that I have no scientific evidence to base this rate on and that this is purely my very rough estimate from my experience only.  So take it for what's it worth.

     By the way the patient has improved dramatically but is still on four different glaucoma medications and one dilating drop.  He is nowhere close to a full recovery and I suspect that he will probably have long term negative effects from the attack.

     If you are on Topamax or considering taking it, please be aware that it can cause acute myopia, choroidal effusions, acute angle closure glaucoma and severe vision loss.  There is absolutely no way to predict who will get this side effect and it can occur even at very low doses.  If you are already taking Topamax and you notice any early signs of vision loss or eye pain please see an ophthalmologist immediately.

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by johnnymutt, Mar 20, 2010
Thank you for this post. I have recently stopped taking topamax for eye issues myself. I was checked out by an Ophthalmologist and did have increased eye pressure. I was only on it for 2 weeks when the pain started to become quite notable. Into the 3rd week I was experiencing severe pain in the back of my left eye, with some really bad irritation in both eyes. During the usage, several times I noticed that I had a lot of red around my iris. I have been off of the medicine now for a month, and still feel a bit of pressure around the back of my eye. Again thank you for the info.

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by PastorDan, Mar 21, 2010
Thank you for this warning.  I refused to even try the Topamax prescribed for me by a neurologist who steadfastly insisted that I was (and am, I suppose, since I still have whatever it really is, after 20 months) suffering from "atypical migraine," without migraine symptom number one.  I read the instructions, and with my personal history, family history, and other current medications, it was clear that it should never have been prescribed for me.

New neurologist (5th one) agrees that it was a bad thing to Rx for me.  He hasn't totally ruled out migraine, but seems pretty skeptical to date.

Dr. Kutryb, you didn't mention here if you are the only doctor in town who would see such patients.  If there are others, the incidence might be quite a bit higher than 1:1000.

Avatar universal
by Danboston, Apr 13, 2010
Hi:  I was just prescribed topomax for bipolar 2.  My doctor began by starting me off on 25 mg for a week, then 75 mg for a week, them 100 mg for a week.  However, after reading some of these blogs, (I failed to mentioned I have only one eye) to begin with. I at 25 mg am coming to a complete halt!!  I am not taking any chances on this horror.  This medication was to be used as an mood stabilizer ( still not approved by the FDA for this purpose as of yet)  My Dr failed to mention this side effect to me.  Thats ok.  At least I had the the intelligence to look into this further.  My one and only eye means a lot to me, it has to last me the rest of my life!  Dan from Boston.

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by Michael J Kutryb, MDBlank, Apr 13, 2010
Let your doctor know what you told me.  It is important to get the word out.  I completely understand your concerns.  Almost all drugs have side effects, which we expect.  What we don't want is ignorance of those effects.  Doctors and patietns needs to have a real world feeling for what can happen.  Remember, I have seen it twice in a city of 40,000 people.  I suspect that only 1000 people in this town are on Topamax at the very most and it could be as low as 300 to 500 people.  This represents a significant risk.

Avatar universal
by ColdCold, Apr 25, 2010
Very interesting.  In May 2007, I experienced acute bi-lateral narrow-angle glaucoma that appeared literally overnight on my tenth day of taking topamax.  I could not focus my eyes on anything further than about ten inches from my face.  It was so bad I could not even recognize family members from a distance of ten feet.  Within ten inches, however, my vision was sharply focused and I could clearly see objects within just a couple of inches from my face which is not normal either.  I would compare it to trying to see something under water, but add to that everything looked cloudy, like I was in the clouds, and all light sources had halos around them.  It wasn't until I visited the fourth opthamologist in as many days, that the doctor identified topamax as the probable cause.  After immediately discontinuing topamax, my vision began to return within a few days and was fully restored within about 5 or 6 days.  Around this time I was researching topamax and cases of acute bi-lateral glaucoma and I found some statistics.  This reaction to topamx is extremely rare, with approximately 37 reported cases in over 1 million patients taking topamax (this was as of early 2007, and the stats may have been a few years old by then).  That works out to approximately 1 in 28,000 people.  I live in a populous area (east San Francisco Bay area) and I was the first case that any of the four doctors had seen.  Needless to say, this reaction to topamax is exceedingly rare, and personally I don't think it should dissuade anyone from trying the medication if your doctor thinks it will help you.  My suggestion would be to give it a try and if you see any changes in your vision, contact your doctor and let him/her know you're going to discontinue the topamax.  It seems that as long as it is caught early there should be no permanent damage to the eyes and vision will restore itself.  Just my $0.02.  

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by Michael J Kutryb, MDBlank, Apr 27, 2010
I literally cannot believe what you are saying.  You had a tremendously dangerous problem - could have gone blind - had to see 4 doctors and must have been losing your mind with anxiety - and all you can say as that it should be OK for people to take topamax.  Will all due respect, are you a drug company representative?  Just some food for thought, if there were only 37 reported cases reported, do you think that is accurate?  I have not reported in the literature any of the cases I have seen.  Three of the 4 doctors who saw you weren't even able to diagnose the situation, so that would lead me to believe that the majority of cases might not even be recognized and only a small percentage of those would be reported in the literature.  The drug has its place in the arsenal of treatments available for certain conditions, but should be used with caution, prescribed by a well-trained physian and only used when really necessary.  I'm just trying to get the word out because I truly believe that most of those prescribing topamax are not away of this serious side effect.  Saving vision and taking care of my patients is my passion and I'll continue to keep looking out for them.  After reading your story, I'm surprised that you are not trying to help protect others from the same scenario.  Strange.

Our office has had three bilateral attacks of patients on topomax.  Helpful medicine but everyone starting or taking it needs to know about this problem.


Avatar universal
by whitneyc, May 04, 2010
I am considering trying Topamax for migraines (I have around 4-5 a month, which are debilitating). Obviously, I have been researching this medicine and am aware of the possible blindness side-effect. I need to know if there are warning signs ahead of time, or if this is a side-effect that will come suddenly with no cure? I don't want to wake up one day while taking Topamax and be blind. But, if there are warning signs before-hand and I can just stop taking the medicine to prevent this, then I might actually try Topamax. Let me know what you think.

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by Michael J Kutryb, MDBlank, May 05, 2010
Yes, if you take it slowly,use it as directed, and look for any warning signs, particularly blurring of distance vision then you should be OK - again as long as done under physician supervision.  This isn't a situation where you just go blind. I was using strong terms to underline the seriousness of the situation.  If not diagnosed properly and treated properly, then blindness is a possiblity but it would really have to be ignored and not treated properly with stopping the drug and instituting proper measures to improve the pressure and choroidal effusions.  Make sure that you really need the drug.  Some people are using it for weight loss and I'm not in favor of that.


Avatar universal
by Rx817, May 08, 2010
What will happen if I stop taken Topomax without titrating off?  I have been on Topomax for 5 years, have had all the side effects you can possibly have.  Last week the Rx was not refilled in a timely manner.  I have been off Topomax for 4 days without consulting my doctor. (taking 100mg for migraines) I feel so good and so awake.. I do not want to continue. What will happen by my sudden stop of Topomax?

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by Michael J Kutryb, MDBlank, May 09, 2010
I don't know your history or why you are taking it.  I really cannot answer your question.  I would be particularly worried if you have a history of seizures.  Call your doctor and ask him or her what they recommend.  It is important for you to have a say in your care but you need to discuss the situation with your doctor before you make your own moves.

Avatar universal
by Arvilla, Jul 19, 2010
My husband had an attack the other day affecting BOTH Eyes.  He was Finally sent from the ER to see an eye doctor who immediately diagnosed the problem.  Precious time had passed and even 6 days later he still has so much swelling therefore we cannot get an idea as to how much permanent damage was done.  He was prescribed the drug for diabetic neuropathy which given a choice,  he would much rather deal with that than blindness!  He too said it was extremely rare for this to happen in both eyes.  We have been fortunate to have two fantastic opthamologist here in NC who have diligently been treating my husband!

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by Michael J Kutryb, MDBlank, Jul 20, 2010
I wish you well.  We battled for about a week with the last case but he came through finally with no obvious permanant damage, but I still think it was very, very stressful on his eyes (not to mention his body's stress level) and I suspect he may have some less obvious damage down the road to his optic nerve and perhaps earlier cataract development.  It is enough stress on the eye to cause it to age prematurely in certain ways.

Avatar universal
by stephan1977, Jul 27, 2010
Hi everyone. I'm based in South Africa. Recently my wife aged 26 with zero eye problems received the generic version of Topamax ( In SA ) from her psychiatrist. Basically she's treated for migraine problems and receives other medications and mood stabalizers for that reason. She started gaining weight, and the doctor suggested a mood stabalizer in order for her to loose weight while using the other antidepressants. She started with 25mg, and within 5 days developed accute glucoma to the extend where she vommited, and went completely blind for 3 days. I'm not a psychiatrist, but I immediately stopped the medication, because that was the only thing she changed in her lifestyle recently.We went to our GP, and he referred us to an optometrist.They tested eye pressure at 33 and 34. Normal I think would be in the region of 14 to 20, but it differs from person to person.We ended up at an eye specialist in Pretoria.He performed lazer treatment to lower pressure, and after about 2 days my wife's eyesight returned, but still not 100 % It's now been 10 days of hell.Thank God we went to see a specialist immediately. I don't have a problem with side-effects, but if those side-effects take away one of your senses or limbs...bad, bad, bad. Luckily I live in SA, because if my wife turns blind, I'll end up on the front cover of the local newspaper. Stay away from this medication.

Avatar universal
by cozkel, Aug 07, 2010
Last July I went in for a routine eye exam and was sent to see a specialist and from there another specialist eye/neurologist.  I had MRIs, CT scans, and a lumbar puncture to determine the cause of the bilateral optic nerve swelling and was given the diagnosis pseudocyst ceribri.  Immediately following the lumbar puncture I was put on 100mg of the generic form of Topamax and my body went through some waves of change.  My poor daughter didn't know what to expect as I could be crying one minute and laughing the next.  As my body leveled out it became easier to function.  I had NO symptoms, no headaches, no migraines, no seizures, NOTHING.  I was told I needed this medication to keep the pressure down in the brain to keep me from going blind and it was a rest of my life kind of thing.  Up until last year I had never taken any medications, suddenly I had to go on Omeprazole for GERD (another doctor) and Singulair (another doctor).  I hate taking medication and I have done what I was told to do, watch what I eat and exercise.  I have lost weight, 40 pounds since September however I would not saw that it was that medication I have been diligent at what I have been doing.  I still do not understand how an antiseizure medication keeps the pressure down in my brain and reading what you say bothers me.  He told me that if I didn't want to go blind that I needed to take this medicine.  I still am asymtomatic, no problems with vision other than I need my glasses for distance more now than I used to, at 45 I suppose that is expected.

Avatar universal
by Carolsees, Sep 04, 2010
I began Topamax in late 2004.  Mid 2006 I lost total vision in my left eye. Was diagnosed with narrow angle glaucoma. Sight returned weeks later yet I underwent the laser surgery (forgot the name) which places a drainage hole in the eye to relieve pressure.  I contacted the manufacturer and was sent a form. As I recall it may have been a release form. I refused to submit or return the requested information to Topamax manufacturers.  I figured I had already given them enough!
I think it's really important ask the question before taking Topamax- is being blind worth what this drug may do? I have since begun using self-hynosis and feel soooooo much better. I researched hypnosis. Some folks don't believe in hypnosis but I am not a goofball or wacked out on anything. The self hypnosis tapes really have helped  the pain and anxiety. Never underestimate the power of the human mind. I have learned reaching for a pill is not the best fix.  
At best- warn others about the potential effects of Topamax. Stand beside them if they make the same mistake and be ready to buy the eye patches when their sight goes away.
Dr. Kutryb, Thank You for your continued efforts.

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by epilepticdollie, Sep 07, 2010
I'm really nervous now so far this is the only medication that has worked to controll my seizures :( If I do have this as a side effect dose this mean I have to stop yet another seizure medication and start over again :( I already I had the nasty lamictal rash that my doctor says no one ever gets and I'm not noticing any blurring but I have noticed a little pressure I'm hoping it's just maybe allergies and me worrying too much. I just don't know if I can really handle more med changes.......  and this that article sounds not fun at all :( If the changes in your vision happen slowly would you notice them right away Ive only been on the medicine a few weeks?

Avatar universal
by bfrog, Oct 18, 2010
I've been on topamax for 6 months and having eye pain in the left eye, opthamologist believes it is from the severe dry eyes, though my cup to disc ration is 75 in both eyes so I guess I'm at high risk for glacoma - I asked him if the topamax or inderal should be a concern and he said no - but I am concerned because the pain in the eye along with the white light I was seeing off and on didn't start until after I was on it for about a month or so, he did give me lotamax which helped for a bit but really the topamax has not stopped the migraines even though my nero says it has helped (because at least now with the maxalt and midrin combo I can make the migraine go away) I'm thinking it is not worth the possiblity of losing my vision as I am only 47.

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by Dot1962, Jan 11, 2011
i just was researching about Topamax, i have been on it for almost 8 years now, at 200mg a day, for migraine headaches, I was never informed it could bother my eyesight from any doctor pharmacy , I am 48 years old and have recently found out i have Macular degeneration, glaucoma and early cataracts, i am so afraid I will loose my sight I am seeing a specialist next month to decide treatment, but I was informed by my eye doctor that the Topamax may have caused these problems. they need to take it off the market asap....
Dot Smiley

Avatar universal
by sirgeorge1, Jan 21, 2011
can whiplash cause an attack of acute angle clousure in both eyes as i experience this 2 days after a car accident

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by Michael J Kutryb, MDBlank, Jan 24, 2011
Probably not the whiplash but the pain medicines and muscle relaxers if they are used afterward could definitely contribute.

Avatar universal
by katyone, Feb 16, 2011
I take 100mg Topamax (actually I take the generic Topiramate) once per day.  I've been on and off of this for a few years.  But started taking the generic last year due to the insurance company making me switch.  Anyway, when I switched to the generic, I have since started having a lot of pressure behind my left eye and into my cheek.  Also, sometimes behind my right eye, but that's rarely.  It's daily behind my left eye.  This has been going on for a few months.  Over the past couple of months I am now having shaking in the left eye...side to side shaking, like a nsytagmus.  When I saw my PCP in Nov, I was only having the pressure and he thought it was due to tension in a nerve along the side of my head and offered to give me some sort of shots...which I didn't want.  But, now the eye shaking and the increased pressure is scaring me.  Is this likely side effects from the Topiramate?  I have also noticed that when my eye is shaking that sometimes I also feel a shaking sensation in the back of my head, like almost like my brain is shaking just in the back near the neck.  Sound weird? Hard to explain.  It's not the same sensation I feel with vertigo.  I can't get an appt w/the eye dr until next month...they are booked.  I can't get an appt w/my PCP until next week.  Any advice?  Thank you so much.  

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by Michael J Kutryb, MDBlank, Feb 21, 2011
I honestly can't say what you have going on.  You just will have to get it checked out in person with an ophthalmologist.  Generally the side effects I wrote about would cause extreme worsening of distance vision and pain in the eye with a fixed, mid-dilated pupil and possible nausea and vomiting.

Avatar universal
by tmcook, Apr 24, 2011
Ive been on Topamax 25mg 3x a day for 2 1/2 years following a brain surgery. Not noticed any vision problems (Im an Optician and know all signs of everything) but have experienced significant weight loss. 87lbs and counting! Didnt know of this side effect whn I began it. Glad I did though...

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by Michael J Kutryb, MDBlank, Apr 25, 2011
That is one of the reasons I supect the drug is used as much as it is.  One of the attacks of glaucoma that I saw was with a patient on the drug for weight loss.

Avatar universal
by shellbell2009, Jun 02, 2011
Ive been on this medication for a while now. before I started it I was seeing my eye doc every 3 to 6 months due to some crazyness going on with the preasure in my eye. It would be up then down. And thinking needing glasses was my headach problem. any way long story short  im also on adhd meds which im sure are not helping my situation. Any way my eyes feel like they are about to pop out of my head i mean it hurts to even close my eyes sometimes. And go figure I i told all 3 of my docs about it and no one can give a strait answer! on the up side i havent had any spells since ive been on it. spells = light headed, whole body goes weak,hearing gets muffled,and blurred vision. the whole reason i was put on topamax!

Avatar universal
by Cheftoole, Jun 13, 2011
Hello. I was prescribed Topamax for migraine prevention and took a single 25 mg tab. Within 3 hours my vision began to get blurry. Within 6 hours, I began to experience what I thought was a migraine. I took Imitrex but it didn't work. Within 12 hours, I was in the ER. I couldn't stand any light, was vomiting, and felt as if my eyes were going to explode. Only after my neurologist was contacted the next day did they check my eye pressure. Both were near 50. I immediately began a series of drops over the next weeks to lower the pressure and improve my vision. It is now June 13 and I took the dose on May 26. I still cannot take sun light for too long, my vision (both near and far) is terrible, and I am unable to work. I did have 20/20 before all of this. I live in Rochester, NY and am grateful for the specialists at the Flaum Eye Institite here- especially Dr. Kahlifa. That said, in you opinion, are there other factors that mau have caused this very sudden onset of angle closure glaucoma?

Kevin Toole

Avatar universal
by maircymraeg, Oct 07, 2011
I have been on pregabalin for nerve pain since an op and recently had a very bad headache and have had eye pain in one eye and nausea for some time. I put the nausea down to a hormonal problem-I'm on HRT after  a surgical menopause and anxiety which  hit me for the first time six months after op. Originally I tried to come through without drugs but went on HRT  months later. I was on 300mg of pregablin but have now come right down to 50 mg daily.
My eye consultant says I have narrow angles and need lazer treatment on my iris because pressures are fluctuating. Is this lazer treatment needed? Could it make things worse? I have not had an attack that has taken any vision I don't think.  I also took one valium two days before my pressure was found to be 20. The week before it was 16. I have also had blurred vision and double vision since starting pregabalin last Feb. I rarely take valium-was given 8 to take me through a holiday and hardly used any. Took one recently to see if it would ease headache. I have never had a headache before but have had pain behind the eye for extended periods  three times in last two years. I have had nausea since August and a cause has not been found until this eye doctor said it could be because of my narrow angles.

Avatar universal
by rosie5300, Nov 13, 2011
i was taking topamax for about 4 weeks and in the first few days i experienced some small eye pain but i rang my doctor straight away and he told me that my eyes were just adjusting to the medication. a day or two later the pain stopped but i was noticing changes in my vision at long distance. But everything up close was fine it took me about a week to notice that it was double vision as it become stronger. ( i wasn't aware at the time double vison was a side effect it was only after reading on the internet that i labeled it) but anyway called my neurologist and told him it was double vision and he said that i would have to stop taking the topamax. I was pretty bummed because i hadnt had a single headache or migrane while taking it which i cant remember a week where i went with out one. I was also not experiencing any other side effect. Anyway thats just the history after i stopped taking topamax after a week i still was experiencing double vison its been 3 weeks total after stopping it and i still have it. My doctor has referred me on to an eye specialist and to get an MRI  in which on the request form he wrote (demyelination?) He didnt mention this to me at all and to be honest i have no idea what it is. But he did he mentioned a theory, that because at age 10 (now 17) i was told i had convergence excess but apparently i cant even notice it. Anyway i was prescribed reading glasses and thats it apart from that i have always had really good vison. But anyway he seems to think that because of the convergence excess and from being on the topamax it has thrown my eyes out of whack. im seeing the eye specialist in 2 days but im beyond worried that this will never go away and im just interested to hear if there could be another reason. Sorry this is such a long post!

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by Msdnygal, Dec 04, 2011
I have been perscribed topomax recently for mood disorder (mania) I do not like medications to begin with because I do not like side affects nor do I like the risks, however I also do not like my mood disorder and have tried other medications that have other side effects. Evry medication comes with a cost right? I wonder what the statistics are for this eye problem.

Avatar universal
by RemedyIsWORSE, Dec 11, 2011
Yeaaahh, I started taking topamax for PTSD symptoms and I started to realize that I was having eye pain and redness; I'm in school for photography. I think that after reading that a certain type of blindness can be caused by topamax and having only just reached 100mg of this, not to mention the non-stop I want to die now, how many tums did I just eat, can I have a Pepto Bismo smoothie heartburn. I stayed off of it for two days. I did not realize that the eye pain was associated with the topamax, until I stopped smoking marijuana at 50 mg of topamax. Now I do. It's funny how you think "okay I want something that will make me stable and calm, but I don't want to continue being perceived as irresponsible nor have a drug test for work get me fired or not get me hired" but then the drug prescribed may give you glaucoma. But I'm not laughing: I'm 26. I had been without medical care and without medical diagnosis for years on end; I suffered abuse for which I have PTSD. I wanted something to help with the rage and aggression caused by being overly defensive. I wanted to get medication for this so that I could stop self-medicating with marijuana and maybe get a better job. But, I do not want to lose my sight. IFor the past two days I have had neither marijuana nor topamax. I took one topamax @ 25mg today and surprise:"stress coma." Though not actually comatose, instead of becoming aggressive during a stressful situation today my body just shut down. I slept the day. I had things to do, but my eyes hurt so bad I was squinting and they were so red that I was afraid that I was going to be accused of smoking weed anyway...
Metabolic acidosis + blindness = worse than the PTSD
I'll take the disease over the remedy. I don't want to take drugs that make me gain weight either. Hello the type 2 diabetes that runs in my family. I think I'll move to a different state now. One in which PTSD is legally treatable by marijuana. It's terrible that all these things that are on the market could possibly kill you or make you blind are perfectly fine. I feel more like I'm more of a case study than a patient to this guy; when you're a mental health patient doctors often treat you as if you were incompetent. Forget medication. I don't need it. I'm going to go look up some states laws and figure out how to get out of Florida now. Wanna know the funny part? If you're old and in a nursing home in this state you can get Marinol (marijuana in pill form) as an appetite stimulant. FML.

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by Jana1982, Nov 02, 2012
I've been sitting here, staring at this bottle of topamax for four days and just can't psych myself into it. I suffer from severe panic disorder, hypochondria, agoraphobia and social anxiety. My psychological issues have severely hampered my ability to function and be a productive member of society. I am lonely and depressed due to this! I'm 29 and will be 30 this month! I was hoping for a 'miracle cure' and I suppose I was desperate also so considered this, but not anymore. I refuse to let something or someone add insult to injury after all i've been through! I was feeling really guilty because I have to go back to the psychiatrist in 2 weeks and tell him how topamax is working out. I don't want to insult him and I fear he will refuse to help me any further! I take a small dose of alprazolam (xanax) as it is, maybe he'll no longer prescribe it to me. It's only .25 mgs twice daily (as needed) and I NEED it! I'm having horrible anxiety now. . hyperventilating, feeling numb and confused, but i've already had my 2 for the day. Oh, and xanax has already taken its toll on my short term memory! I don't need something that will lower my I.Q on top of that! I like my personality, I just wish I could actually SEE my friends and show it off more. I also like my eyesight. . LOL! Thanks for your honesty, Doc :)

Avatar universal
by karmadog, Nov 17, 2012
my eyes have gotten so bad in the past 2 years. Yet the eye doctor has found nothing. I told her I cannot see anything at night. I cannot drive. I also said everyting is blurry.  She did say I needed distantance glasses. So I got them. I still can't see at night. I always have dot's like floating around. She said I have very begining stages of cataracts but they are not bad.  They cannot find what is wrong with me. I cannot judge my distance between cars, or parking or how close I am to the front of the cement block when I park and when I am driving at night I see no person until I am on top of them and almost hit them.  I have been on and off topamax ofr about 2 years for Headaches, and I like it for my moods.  I take lamictal and have been on it for 8 years, but topamax gave me that lift when down and helped with headaches. I think i should ditch it for good though, but will the eye problem get better. I went off it for  about 5 months and my eyes did not get better. She did say I had dry eyes bad, but the drops make my vision even worse. Help!!

Avatar universal
by rach8075, Nov 29, 2012
I have been on 100 mg of Topamax 2x a day for approx 10 years for migraine prevention.  When first starting this medication I had many side effects...hand and feet tingling, food tasted bad, etc.  However, those went away.  I have been lucky not to experience any of these alarming eye problems.  Thank the Lord!!  I have tried to stop taking Topamax numerous times over the years, simply because I wanted to see if I could just get off of taking pills every day ...plus it did cause me to have a kidney stone which wasn't any fun!!!  However, I only lasted a short while and the migraines were unbearable.  So, I've been faithful at taking them and to me it is simply a wonder medication.  I literally wasn't able to function before.  Thanks for this information because I will definitely keep a watch out for any warning signs with my vision.  No one has ever brought this to my attention.

Avatar universal
by Frannie213, Feb 28, 2013
I spent 7 hours in an emergency situation with an acute case of closed angle glaucoma this past Sunday. My pressure was at 60 and I was in the most severe pain that I had ever experienced. Natural childbirth paled by comparison. A handful of years ago my doc put me on Topomax while adding, " no side effects and it's not a narcotic". I have been a migraine sufferer for 20 years and at that point in time my kind and compassionate neurologist died, leaving me with no place to go. When you are in the midst of a daily, painful struggle, you will try just about anything. He started me at 25mg a day and the goal was to titrate to 200mg, but that never happened. I was so sick, lost so much weight that my ribs hurt and my size xs underpants were falling off and my hair was falling out. Not to mention that I never could remember a thing. I stayed on it for nearly a year and got off cold turkey. The thing is, I was just routing around the web trying to find out if closed angle glaucoma causes migraines when I stumbled on all of this information that links Topomax to the disease. I had mentioned the pressure and all the visual stuff to my optometrist and he simply said that it was more than likely an ocular migraine! I have been having bouts of this pressure with haloes etc for the past handful of years, but on Sunday the bomb exploded.
When I got off of Topomax I felt it was my duty to post what I knew on the web, which I did, and I received at least 9 emails of thanks...This drug should never have been approved for use for migraine sufferers. It was intended for serious seizure sufferers.
Thank you very much for publishing this word of warning. I will continue to do what I can to advise and inform...
As for now, I will definitely be sending my ex-doc the literature in hopes that he will learn from it.

Avatar universal
by hstephens336, Mar 22, 2013
I just got rx topomax for a weight loss study w/ phentermine 37.5. I was suppose to take 1/2 a topomax at night & phentermine in the morning. Gradually he wanted me to move up to 2 topomax 100 mg. I took a half the first night & the next morning the entire day was in a haze, i felt like i was high (not a good high) confused, Anxious, Moody, the back of my head was on fire, as well as my forhead. Later that night i had a Severe Sinus headache so i decided to just take a fourth, the next day was better, not as bad but still felt the same just the effects werent as strong, also if i bent down & came back up to quick i felt dizzy & Nauseous. what made me discontinue taking anymore was my ears started to ring & my eyes blurred & i thought i was going to black out sitting at work ... I'm not exactly sure if it works For weight loss or not? After that day i havent taken the pill anymore. i Have no feeling of hunger on the phentermine now but i can tell the topomax helped make the effect stronger by making food undesirable. And fortunately the pill Had too many side effects for me to continue. Lord only knows what could've happened if i had taken the entire 100mg or even the proposed 200mg/day.

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by kh12345, Mar 24, 2013
So glad you are warning people about this drug!  Two years ago my neurologist prescribed Topomax to helkp with my migraines.  He mentioned a few of the symptoms but not the risk of losing eyesight.  I was on it for 8 days at 25 mgs I didn't like the other side effects and had read about the possible loss of eyesight so I decided to go of it but had read that you have to be weaned of it since it could cause seizures in people who have never had them.  So, my 8th day I took only the 25 mg since I didn't want to go up to the 50 mg i was supposed to take and was going to call my Dr. in the morning.  My eyes (which were 20/20 my entire life except for the past 5 yrs I wear readers, age 52) started hurting, seeing small fragmented specks, then everything was blurry, only could see shadows & light and I guess my eyes were dilated because when I woke the nest morning the sun coming through my windows overwhelmed me like a strong spotlight.  Anyway, to shorten my story, I remembered reading about the blindness side effect of Topomax and felt 100% it was from it.  My neurologist completely disagreed and said it was visual auras, which I told him I have never had before with my migraines.  Since I had the worse migraine ever with vomiting he said he would call in an anti nausea medication.  My husband picked it up for me made no difference I was so sick.  So, my neurologist then said I could go to his office for a shot of Immitrix? for my migraine but he was making hospital rounds so he would not be able to see me.  Well, I had someone drive me, his nurses called him in to see me about my eyes.  This Dr. asked me if I had allergies!!  He was still in denial and said I could go see an eye doctor but it was Friday and probably hard to get in with one.  He casually said I could go to the ER if I wanted.  I can't believe I did this but I decided to just go home.  The next morning my eyes were even worse, had my husband take me to the ER they took all kinds of tests, they did check my eye pressure and it was really bad. Can't remember details but the eye Dr. on call, over the phone started me on diuretics and eye drops. Met me in her office the nest morning (Sunday) and was amazed at what was happening.  She had heard of this Topomax reaction but had never seen it.  Also, she contacted a glaucoma specialist, I saw him the next day, he did an ultrasound of my eyes and diagnosed Narrow angle glaucoma due to the Topomax.  He thought I might need eye surgery but with all his expertise he was able to get my eyesight back.  It truly was one of the scariest things I have ever been through.  Btw, that same neurologist was on call in the ER and still refused to believe or admit it was caused by the Topomax. Very frustrating.  I told everyone I could (Facebook) about this horrible side effect.  I feel the biggest concern, well two of the biggest concerns are patients NOT being aware of this side effect and continue to take the medication and health care workers/ especially the physicians who are prescribing it, not listening to patients who are having eye problems/ eye attacks.  From what I know the pressure must be taken off the optic nerve in at least 48 hours or the blindness can be permanent.  I am so thankful for my two eye doctors who acted quickly to treat me.  Thanks for getting this message out there, you obviously are passionate about what you do and truly care about your patients and warning those you don't know so they never have to experience this and lose their precious sight.  You should be applauded!!

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by camsmom528, May 27, 2013
I've been taking Topamax for a little more than 6 months now for migraine prevention and I have been pleased with the results.  I went from having almost daily severe headaches and what I would I would call true migraines (with light and sound sensitivity and nausea and vomiting) about once per week to almost nothing.  I still get minor headaches but nothing I can't get rid of with ibuprofen and it doesn't occur daily anymore, however, my headaches usually did come with pain behind my eyes before I ever started taking Topamax and I still get the pain behind my eyes.  I can't tell if its any different or worse than before or if I should be worried or attributing it to the medication.

Avatar universal
by F65, Oct 24, 2013
Have been on Topamax for over 12 years . Since July have been diagnosed with macular holes in both eyes. My G.P found a  side effect with the macula and the Topamax, yet my neurologist can find none. Any thoughts on this side effect.

Avatar universal
by F65, Oct 24, 2013
Have been on Topamax for over 12 years . Since July have been diagnosed with macular holes in both eyes. My G.P found a  side effect with the macula and the Topamax, yet my neurologist can find none. Any thoughts on this side effect.

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by Alymommy, Dec 16, 2013
I was put on topamax lowest dose once daily for weight loss after 6 days ONLY 6 days of taking the medication I started having blurry vision something I've never experienced before I immediately looked up the medication online knowing that I've never experienced blurred vision and had just started a new med. I read as much as poss w the way my vision was about the adverse reaction causing acute angular glaucoma and became very worried as the night progressed I started having severe pain behind both eyes and was taken to the ER where they didnt believe my self diagnosis and just sent me home w pain Meds and anti nausea Meds as I also started to feel very sick. This all happened on a Sunday and I was unable to contact the doctor who prescribed me topamax. The next day I was extremely sick and completely blind! I stayed in bed all day and called the doctor who put me on hold after I asked if it could be acute angular glaucoma to read up on it and then told me he highly doubted it and if I didn't feel better in a few days to call him back! Well I'm glad I didn't listen because I would still be blind!! My husband came home to find me in bed and describe me as looking like a dead body, my eyes were fixed and dialated and my face was blown up. Not to mention I couldn't stop vomiting. I was taken back to the ER where I ended up being diagnosed with acute angular glaucoma from topamax!! I was transferred to two different hospitals to see specialists and then finally to the New York Eye and Ear Infirmary where I would spend the next week also the scariest week of my life. So few cases had been seen and no doctor could assure me my vision would ever return ( at this point I was declared legally blind). My eye pressure was in the 60's in both eyes. They put me on a series of eye drops and other medication to drop eye pressure which then dropped too low! They gave me lazer eye surgery while my platlets were low causing swelling and bleeding in my retinas as if I hadn't already had enough problems! They then put me on different drops and told me the only thing we could do is wait to see (no pun intended) what happened. I was released from the hospital still unable to see. It took a month for my vision to very gradually return completely and I thank God everyday for eyesight! I now have trouble seeing at night and it'll never be 20/20 as it was but I can see and that's good enough for me now after knowing what it was to be legally blind and unable to see my sons face. I still suffer with short term memory loss and the trauma of the whole event and it's been a year and a half since this happened! As u can see I still google it from time to time. It was awful and I'm glad to see the word is out there!

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by laurie0854, Apr 24, 2014
My daugher was on Topamax for only a week. Her episode started with just blurred vision in only one eye then both eyes and soon escalated to debilitating headache Tuesday night 4/22, we took her to the ER where it took 4 shots to ease the pain.  It's been 2 days now, the pressue has gone down but she is on 3 eyedrops and oral meds but her vision has not returned.  This has been a absolute HORRIBLE nightmare to see my child go through this.  I would reccomend this drug be taken off the market.  Even though these side effects are rare they are too serious.  Hopefully she will recover but it's costing her a small fortune and time off from work.

Avatar universal
by Gr8teful, May 03, 2014
I was prescribed Topamax for frequent severe migraines and within one week of starting the medication, I began to experience what I describe as "tunnel vision".  This rapidly turned into blurry vision and what looked like a million flashbulbs going off at the same time, followed by the most severe headache I've ever had.  I later learned that this medication had brought on a complex migraine along with the glaucoma.  The next morning, I went to the ER and the on call doctor immediately sent me to an ophthalmologist for treatment.  He had me immediately cease taking the Topamax and in addition, he prescribed a very high dosage of steroids for ten days.  I saw him two weeks later and the glaucoma was gone, but apparently the steroids made my already present medium size cataracts grow rapidly.  I have also been treated in the past with steroid injections for tendonitis and back problems, as well as oral steroids for sinus infections and such, but he felt the sudden shock of the high dose of steroids caused the cataract growth.  Long story short, that was in September 2012 and at age 52, I'll be having my first cataract surgery in two days and the other two weeks after that.  All of this to try to relieve migraines.  It will now cost me over $2,000 for the surgery (that's just the out of pocket cost for me after insurance) as well as the cost for the side effect treatment.

By the way, this was only the second time this 38-year-old doctor had only seen two cases of this reaction from Topamax - one in residency and mine.  Ironically, during the two weeks before I had my follow-up treatment, he was contacted to serve as an expert witness in a case in which a pharmacy had accidentally given an elderly gentleman Topamax instead of the correct medication (it had a similar name).  So I guess my case helped educate more people, anyway.

I don't know if there's a way to sue the drug company over this, but it would be nice to at least be reimbursed all the costs I've incurred as well as a little for time and suffering.  I did have to miss a considerable amount of work.

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by Michael J Kutryb, MDBlank, May 05, 2014
Your case sounds like a textbook case from what you told me.  I suspect the headache was from the extremely high intraocular pressure - not a migraine.  Just a guess, I would need to know the pressure.  It is extremely doubtful that steroids would worsen a cataract that quickly, but if you indeed had a severe glaucoma attack with narrow angles, choroidal effusions, and pressures in the 50's or  higher, that could cause a cataract to worsen quickly.

Avatar universal
by billdehaan, May 12, 2014
I just want to say that I'm thankful for your blog. I'm a 52 y/o male, chronic migraine sufferer, who had topomox recommended to me by a company nurse, so ironically, I mentioned it to my MD. He and his intern did review it, and gave me a 25mg prescription, starting May 1st, upping it to 50mg/day. I'm a high blood pressure case (under control with diltiazem), and otherwise in generally good health, but the migraines have become increasingly debilitating (9 in a 30 day period).

I read the literature, and I take warnings seriously. I try to avoid "WebMD-itis", though.  Unfortunately, for me, things like "blurry vision" are commonplace, so even if the drug was causing it, I'd be hard pressed to know if anything was different from what I normally see. I would say that I'm maybe seeing slightly different at a distance, but even if I am, the difference is 5% maximum, so I could just be imagining it.

While I saw no quantifiable side effects on 25mg the first week, at about day 9 (this is day 12), I started noticing minor things (taste of Coke changed, etc), and while I wouldn't say I have eye "pain", I'd qualify it as irritation, or pressure, like maybe a high pollen count. I've felt fluttering under the eyelid of my right eye (the working one), and yes, I've not taken today's dose of topomax (nor will I take tonight's), and though my MD is on vacation, I'm seeing his on-call tomorrow. I've not experienced any visual problems (outside the chronic problems I have with my eye); and certainly nothing like what I've been reading above.

Am I being paranoid? Acting like a hypochondriac? I certainly hope so, but reading the above, it's made me more convinced that I made the right decision in booking that doctor's appointment, and I definitely want an interocular pressure test. And whether this is an issue for me or not, I'm going to be sure to mention to the company nurse that topomox has this known issue; some people have been taking this simply as a weight loss aid!

Thanks for a well documented and presented blog.

Avatar universal
by maltanna, Jul 02, 2014
Hi thanks for this great resource of information my husband started taking topomax on the advice of his nuerologist for cluster headaches 4 months after taking topomax he started getting pain behind his eyes and down his nose and forehead with acute onset of double vision. He has had every scan, mri you name it every blood test everything is normal the only thing that was different was the introduction of topomax hes been off the topomax for 3 weeks not and we are praying the double vision isn't permanent. Has anyone had double vision as a side effect and did it go away thanks for your advice.

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by Sharmilajoban, Aug 21, 2014
Hi I took Topamas on March 7, 2014 (25 mg) it was prescribed for foot pain. I woke up the next morning with a massive headach. I went to the bathroom and came out and everything was really blurry. I realized I could not see so I went into emergency. It took a few hours to find diagnose what happend to me and they treatment for  angle clousure due to the medicaton. I have cateract in both eyes and glaucoma as well. I have to have surgery. I am afraid to get surgery and
yet my eyes are getting processively worse slowly. It has not been 5 months. Should I get surgery? I live in Vancouver BC and I am treated by the eye clinic here. I am not sure if I should find a doctor that specialize in this or trust that
I am in the best care. Please do advise.


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by Michael J Kutryb, MDBlank, Aug 22, 2014
Hopefully your eye pressure is under control now.  The cataract surgery may be a bit more complicated depending on how much damage was done when you had the angle closure attack.  Fortunately for you it sounds like it may have been due to a side effect of the Topamax and not anatomically narrow angles that you were born with.  Either way you need to have a frank discussion with the surgeon about the surgery and if it is expected to be routine or complicated.  If it is a complicated case ask if he feels qualified and if he is not I am sure he will refer you to someone else. I suspect the surgeon will be probably be very capable since we do these type of cases all the time.

Avatar universal
by ghfd, Aug 25, 2014
I am a 23 year old f on Topamax about two months now... I started at 25mg twice a day for migraines my migraines get so bad that I start to convulse and end up in a seizure(episode) I have had an EEG and MRI which were both normal  I am not Epileptic? I just have chronic migraines and apparently was allergic to my bad habit of smoking which I have quit.... the migraines did not stop so I started taking 50mg twice a day... I then started only having headaches here and there and only three migraines for a period of 3 weeks which was great! but now.. I am on day 9 with a SEVERE MIGRAINE and the migraines are TEN TIMES WORSE then I HAVE EVER EXPERIENCED!!! I vomit the pain is stabbing and overwhelming it comes on suddenly with no aura or warning like I used to have with the past migraines BUT NO SIEZURES I treat my migraine with 100mg oral sumatriptan but seems like the migraines are back and even worse but I don't see my nuro for another six months being  that I just seen him two weeks ago.... any idea? advice?

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by Joannhuebner, Jan 03, 2015
What about optic nuritus and vision loss? My son sees the best at Emory university so we're told but he's still losing sight he's now down to maybe 3-4 percent and has one to two attacks a year and we have to go to hospital for 3 days of high dosages of IV steroids. Time is of the essence or he loses more sight. Drs. Have no answers at all as to why he's losing his sight. This has been going on for 15 yrs. During a MRI of optic nerve they found an anyursymm and he had to have brain surgery once they got in they found another that went undected in MRI at "EMORY " ...
I feel blessed he's still alive but still very frustrated that there's been no answers  as to why he's going blind and yes he's been taking topamax like forever and high doses as well from his doctor.
Signed a broken hearted mom

Avatar universal
by VHouston, Feb 10, 2015
Can we still ask questions about this blog as this was started in 2010?
I started topamax January 3rd for migraines and I take 1/2 of a 50mg pill in the morning and 1 whole 50mg pill when I go to bed. Over the last few weeks I've been having severe nausea.Then last week I started having eye pain. Last night I had a dream that I was searching for an e.r. cause my eye was going to explode. When I woke up my eyes have felt pressure all day today. Now I have lost my health insurance and I don't know if I should just stop this topamax cold turkey or wean off of it. Do you know? Thanks so much any suggestions would help.

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by I_am_healthconscious, Mar 28, 2015
I have been prescribed .25mg topamax for binge eating disorder / bipolar.  I have been taking it 5 days at bedtime.  Yes it makes me tired and tingly.  some bluriness that comes and goes.  Question, at this dosage, is there risk of glacoma you mentioned?  I don't feel pressure?  Can this symptom come on after awhile taking this lowest dosage?  Your blog is super scary. I must tell you that this drug has been god sent for feeling even and getting rid of binge urges.  Just want realistic input if I should be vigilant or stop it because its dangers outweigh the good its doing. Thank you for your previous blog years ago.  please give us new blog on topamax.  really really great.

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by I_am_healthconscious, Mar 28, 2015
Yikes, he was on my dosage....I need to rethink things.  thanks for the blog

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by canadianartillery, May 03, 2015
Hi I'm on 1200mg a day and I'm starting to not be able to see in the day light this is obviously baby right? Also my knees are in extreme pain?

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by canadianartillery, May 03, 2015
Bad not baby lol

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by canadianartillery, May 03, 2015
I need topamax for my health issues and I'm afraid wut might happen if I stop taking it? Is there a substitute?

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by PlumO, May 06, 2015
I have been on Topamax for several years now for Migraines. 100mg BD. In January I had a bilateral iridotomy, due to narrow angles and raised pressure. Although I had told the Ophthalmologist I was taking Topamax no mention was made of it even slightly being an issue, nor when I mentioned it to the Neurologist. I have had a steady loss of vision over the last year with loss of peripheral vision and very dry and irritated eyes. Nothing much seems to be able to be done except the suggestion of lubricating drops. In Australia there does not seem to be an awareness of the side affect issue. I am also on the Botox medical trial for my migraines which are dreadfully severe. Not sure where to go from here as no specialist seems to take my concerns re Topamax at all seriously
J Occleshaw

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by Jomama625, Jun 14, 2015
I had a similar experience as Alymommy 10 years ago. I was on topamax for about a week when I had a bad headache and blurred vision. I went home to nap away what I thought was another migraine, but woke up having trouble focusing on the digital alarm clock. As time went by, my vision got worse. The room looked smoky. My husband took me to the treatment center who said it's probably just a bad migraine and sent me to the hospital for a CT scan. During the drive there, the stoplights were blurs of color with halos around them. I was starting to get really scared. While waiting in a  hallway for the CT scan, I looked at my husband sitting right next to me and started crying hard. He asked what was wrong. I told him, "I can't see you! I can't see anything anymore! I'm going blind right now and nobody can help me!" After the scan a neurologist came in the room to see me. He said I had a complicated migraine, gave me a pill to take, and sent me on my way. I demanded an eye dr but was told that they weren't going to wake up their eye doctor to come in for a migraine! So I went home. All night long, I had to crawl from my bed to the bathroom to vomit and cry. I crawled back and forth several times not knowing where I was. In the morning my husband called my physician at home against my will. I assumed that it was pointless if other Dr's couldn't help me. He told my husband to get me to the opthomologist asap if my eyes were red. Naturally they were red from crying but my husband said he could tell there was something wrong. The opthomologist checked my pressure and it was dangerously high. I had to stumble to a room and sit still in a chair while the opthomologist popped holes in my corneas with lasers. It was extremely painful. It felt like a rubber band snapping in my eyes. While trying to sit very still for the surgery, I was vomiting in a waste basket on my lap while he did the surgery. I was there for about 8 hours but was finally able to see blurry colors by the time I left!  I was sent home with a regime of multiple eye drops and a prescription for glasses, something I've never needed before. Slowly but surely over the course of 2 months my vision returned. I stopped needing the glasses. My vision went back to 20/20 but still have trouble seeing at night and in bright sunlight. The opthomologist called it double vision, but it's more like seeing glitter shining close to eyes for a few seconds. I was extremely fortunate. I thought I would never see my baby grow up. She was only 1 at the time. My opthomologist saved my vision and I thank God every day for my eye sight! Thanks for raising awareness about this dangerous side effect!  I hope my story can help someone else out there. If I hadn't been able to get to the opthomologist when I did, I would have been permanently irreversibly blind! To this day my chart says allergic to topiramate. Please be careful everyone!  

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by Michael J Kutryb, MDBlank, Jun 14, 2015
I'm so glad you fully recovered.  Typically these cases are totally misdiagnosed early on.  When people have an attack of narrow angle glaucoma you can usually dusgnose them from across the room because they are the ones holding the waste basket throwing up and have the fixed
Mid dilated pupil. Thankfully I haven't seen a case in 3 years.

Avatar universal
by foofer12, Jun 18, 2015
My daughter is 14 and on Topamax for almost 6 months for migraines..  She has always had problems with her right eye not being able to focus clearly  but sees 20/20 with both eyes.  We went in for a routine yearly checkup at her pediatrician and was told she needed to see an eye doctor because she could barely see the largest letter on the eye chart with her right eye.  We immediately made an appointment with the eye doctor and she has noticed that everything on her right peripheral vision is gone (black) in her right eye.  At the eye doctor, before dilation, she was seeing at 20/500.  After dilation and some correction, she was able to see somewhat better.  We are going for a field of vision test on Monday and are trying to determine if Topamax is the cause of her eye trouble.  She has began complaining with eye pain in that eye and overall feels miserable.  Her neurologist keeps insisting that Topamax is not causing these problems, but myself and her opthamalogist are starting to believe it is.  Thanks for this blog and for getting the word out.

Avatar universal
by 1234clm, Jul 30, 2015
Hi interesting reading all of this. I was put on Topamax and a week and a half in, not even on my full dose woke up blind in both eyes.  I could see big outlines but on the eye test I could not even see the big E!  I went to the hospital and they did a bunch of tests and told me to go immediately to our hospital that specializes in eyes.  Once I was seen there I had emergency eye surgery for glaucoma like symptoms.  Did I mention that in this entire day ordeal my neurologist had not returned my call even though I called at 7am said I could not see, and called every hour after that.  Luckily my GP was calling me every 10 mins. so concerned and making sure I was getting treatment.  The ophthalmologist was not positive it was the Topamax until 3 months after the surgery my eyes were 100% healthy and 20/20 vision restored.  He said for sure it was the Topamax that did this to me.  It will be 2 years ago in October that this happened and my neurologist still has never got in contact with me..... Needless to say I have a new wonderful neurologist who tries natural products first.  He also tells me I am the talk of the city amongst neurology staff and patients.  Everyone tells me I am so lucky!  Don't be afraid to question your doctors recommendations.  A good doctor should encourage it!

Avatar universal
by asher2789, Aug 03, 2015
I was just put on topamax less than a week ago (severe, stroke-like migraines), 50mg a day to go up to 100-150mg a day slowly depending on what is therapeutic for me.

Just kidding. Going off it as of tonight. I went on it while in the hospital and my eyes were hurting, I thought it was because I wasn't sleeping well due to the uncomfortable hospital beds. Then I came home, still my eyes hurt, and were a bit red, thought maybe it was my contacts. Then I saw this after actually looking up about peripheral neuropathy, which is a weird side effect I'm having and I'm only 26 and previously otherwise healthy! I've only been on this drug for about a week, it hasn't helped my migraines but God I feel awful, I feel like a tired zombie sleeping all the time (previously I was hyperactive), little interest in food, mild nausea, intolerance of heat (great timing, were in the middle of a heat wave), and unquenchable thirst. I've had a mild headache behind my eyes the whole time, and occasional stabbing eye pain with a migraine (tends to happen previously, probably not the topamax but who knows now).

The only good thing I have to say about topamax is that I've been sleeping well - too well - and that it's mildly mood stabilizing and that's helpful for me right now. I just went through a bad breakup the other day and I'd normally be a hysterical mess but instead I was just ...numb.

So yeah. You guys have scared me off the drug - I called my pharmacy and they said it was ok to immediately discontinue it. I'm not risking blindness to treat my migraines and psych issues no way in hell. To those who suffer from migraines and seizures, if you haven't tried cannabis, I strongly recommend you try! Indica dominant strains have always helped me damn the medical establishment and the federal government to hell I don't care if it's legal or not or if you consider it "a substance abuse problem or not! The church thought Galileo was a delusional heretic but he was just many years ahead of his time!

Avatar universal
by Luckylady55, Sep 04, 2015
I started Topomax on Wednesday 26.08.2015 for trigeminal neuralgia. On 02.09.2015 I woke up with jelly like lumps on the whites of my eyes,blurred vision and flickering lights but no pain. I had read the leaflet that came along with the medication and became concerned, I googled topomax and eye problems and clicked on the images button and there was a picture of someone's eyeball that looked exactly like mine. I made an emergency GP appointment but was told it was allergic reaction to something And I needed antihistamine, I told Gp I already took antihistamines I was offered drops to add in, I declined and insisted this was more serious I was told reluctantly to go to eye casualty which I did, nearly an hour away. On arrival there the triage nurse said the same thing and I had to wait another hour or so to be seen by a practitioner who also said the same thing though I was insistent this was topomax related. Fortunately this lovely lady said she would check the pressure in my eyes and was astounded that it was 48 in both eyes. I was sent through to a Doctor and the pressure had already increased to 52 in both eyes. I was immediately admitted to hospital and started on five different drops and IV and oral drugs. I was scanned and had photos taken and my pressures checked many times over the next 48 hours by some wonderful Doctors who had heard of this condition but not observed it first hand. they researched as they went along and kept me informed at each step. After 48 hours the pressure in both eyes was back to normal and I was allowed home with five lots of eye drops and an appointment booked in four days for a review but told to return immediately if I noticed any new symptoms. I still have blurred vision but hopefully this will decrease in the coming days. Please always insist you see an eye Doctor if you think this medication is the cause of your symptoms.

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by Patsy321, Oct 21, 2015
Dear Dr. Kutryb: Sometimes doctors suggest that people take Valium for an occasional medical procedure (e.g. an MRI) or when flying due to anxiety.  I may have had narrow angle glaucoma approximately 11 years ago although it was undiagnosed as such at the time. I lost a lot of vision in one eye.  It may have been due to taking Topamax for one week or the combination of Topamax with other drugs during that week.  What can I take instead of Valium for occasional use?  I read that Valium might increase eye pressure and that is why it is contraindicated for people with narrow angle glaucoma. My eye pressures have remained between 19 and 21 for the past 10 years.  I get an annual exam from an ophthalmologist and am considered "glaucoma suspect" but would like to know what can I take instead of Valium for occasional use?    (I have four aunts who developed glaucoma (I assume the open angle kind) and took drops every day.  I have a first cousin who was also given Topamax and developed very serious, lasting eye problems (Arch Ophthalmol/Vol. 119, Aug. 2001 p. 1210 Case #2.)
Thank you very much.

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by Maria8772, Oct 26, 2015
I started taking 100 mg of topamax 5 days ago and today my eyes started feeling all full of pressure and then started hurting. At first I thought I was just having some kind of a headache (in and around my eyes..) but vaguely remembered reading through the side effects of topamax and the part about glaucoma and permanent blindness. I took topamax for about 5-6 days at 75 mg around this time last year but don't remember having these serious side side effects. I had the feeling like I was going to pass out from time to time then and I do this time too and that would be a fair trade out for the treatment of unstable moods, anxiety, panick, and anger control that I don't like having..but this eye pressure and pain with potential for PERMANENT blindness is NOT okay and I am not going to take it anymore, I am calling my doctor in the morning to alert them to the problem and I am going to try to schedule an appointment to get my eyes checked. Thank you for this information!

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by Kares, Jan 20, 2016
I get tested every year for Glaucoma because of my high eye pressure.  In November 2015, I tried to get in to see my Optometrist because something weird happened to my eyesight and couldn't get in.  I thought it would go away so I tried to ignore my symptoms.  I had a flash of light happen in both eyes and then I had more floaters then usual.  It wouldn't go away and then I had a half circle of a flash of light, still in both eyes.  I called and they wanted to see me immediately. The doctor said I had symptoms of retinal tearing.  I also asked about a type of fog or cloud like thing that's transparent in my eye.  He said that is cataracts and told me that I would have to start coming in every 6 months to check my eye pressure because of the current problems.  This all freaked me out.  I started searching (Googling) on the internet.  I feel I should be able to do something about preventing Glaucoma than just waiting for it to happen and then stop the progression.  This is when I came across your information about Topamax!  I've been taking it for years.  I get migraines and so I take Imitrex everyday, to help prevent them and when I still get them which was 3-4 times a week I would take my Topamax.  A lot of the times I would need to go to bed, turn off all sounds & lights, couldn't eat, and would get nausea, at times.  I was a basket case.  I was taking all kinds of pills for years and then I started taking Adderall.  I didn't get so many migraines but when I did I would take the Topamax.  I will never take Topamax again.  I started feeling so much better after increasing my Adderall but then my body gets use to that amount.  It's really was helping but not so much now.  I now have a little energy to get up and focus to get things accomplished.  I'm now looking into eating better and finding natural ways to compensate my physical illnesses.  If that means Cannabis then I will check out ways so I'm not getting high.  I don't need to get high nor do I want to or want that in my lungs.  God made plants and so I need to find what will work for me.  Thank you so very much for your information on Topamax.  That explains a lot of my problems but it might be too late for me and my eyesight. I also don't know what I'm gonna do when I have my next migraine.  If you can help to enlighten me and others about steps we can take to save our eyesight, well, I'm all ears. Ha, ha.  I'm gonna pass this on to people who normally won't "hear" about it.  I have a lot of deaf friends.  Thank you so so much!

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by miro505, Apr 14, 2016
I've been taking topiramate since 2008 (I am 33 as of writing this) & I feel as though I am going blind. I never had eye problems before this medication. Now it is impossible to drive at night. If I step into sunlight and then indoors again I go completely blind for several seconds. I'm not sure what to do.

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by Tinastoverc, Jun 20, 2016
I didn't have any warning at all just one day all the sudden my eyes got blurry and it has been that way Fri 5 days now I went the er on the 2 day they said stop the topimax but it has yet to clear up. If its not better by Fri I guess I have to see a eye dr. I was only on it for a week at 100 mg a day I have no pain just blurred vision and swollen like eye lids glossy I can see up close but that's it. Not sure if I should wait or go in now. The hospital said it should clear up in 48 he's well its been pass that. I'm just waiting to see if it clears up I guess.

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by MrZonk, Jul 10, 2016
Hello Dr. Kutryb. I have epilepsy; semi partial and have gained weight over the last twenty years. I'm 51 now. I take Neurontin, with Vimpat. I tried Dopomax years ago but it made me too silly. At 50, my wife nagged me to get my eyes checked and like my dad, I have glaucoma. I didn't tell my neurologist about the glaucoma so I stopped stopped for the weekend. The only reason I was trying to get off the Neurontin was to lose some weight. I'm always going to have seizures and I just deal with them. They're frustrating but nothing major. Over the week I've noticed the corner of my eye has felt odd. At this point I'm still on my full dose of Neurontin. Just like to hear your feedback

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by Klint1, Jul 17, 2016
I was diagnosed of hepatitis in 2014, I have tried all possible means to get cure but all my effort proved abortive, until a friend of mine introduced me to a herbal doctor from Africa, who prepare herbal medicine to cure all kind of diseases including hepatitis b virus (Hepatitis), when i contacted this herbal doctor via his email, he sent me hepatitis b herbal medicine via courier service, when i received the herbal medicine he gave me step by step instructions on how to apply it, when i applied it as instructed i was totally cured from the virus within 8 days of usage. Contact this great herbal doctor via ([email protected] yahoo. com)

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by NeedingHelp00, Jul 21, 2016
Hello, in response to  cold cold, I am currently experiencing the very same thing, I was on my 15th day of topamax and just had increased my medication to three pills per night, when I walked out of the office Monday at 530pm, in Virginia it was about 100 degrees outside and as soon as I walked out the back doors, everything went blurry. I called my boss and friend and said, Lisa, I just left the office and I can't see anything. I had to go pick up my son fromy summer camp ...and she thought the heat may have caused my vision loss. She said, just sit there a few minutes get your AC pumping and I'm sure you'll be able to see again. I said, okay, thank you and we hung up. But my vision did not return. My father has diabetes and my husband said that night, maybe it's diabetes.  This worried me. And when I woke up at midnight and still couldn't only see about 6 to 8 inches in front of my face, I googled how to lower glucose quickly.  I read to exercise and drink lots of water. I drank a 1/2 gallon of water and went out to the garage at 1230am and worked out on the elliptical. I still couldn't see after all of that. My mom drove me to the doctors the next morning. The checked my sugar, which was 111 and my blood pressure was low, but it always has been   they drew blood and took a urine specimen. I went directly from the urgent care to my eye doctor.  He checked my eyes with a few different lights and took a few photos of each eye with two different high-resolution fancy eyeball photography machines. He is able to tell if someone has or will be getting such diseases as glaucoma hypertension or diabetes and he didn't detect any of those when he did his assessment of my eyes. My pcp doctors told me to stop taking welbutrin and cut back to two pills a day for topimax. Are they crazy. I can't see, I stopped all of my medications, didn't even take advil or vitamins over the last few days. I've been Googling what could cause a sudden onset of nearsightedness and all kinds of scary things came up, including brain cancer and stroke. Today is Thursday, July 21, 2016, I still cannot see. I contacted topimax and advised them of my adverse side-effects and they did not seem willing to help much or give me information, just wanted to take my information. I received my blood work back this morning, everything was normal. I went to theye hospital this afternoon for a CT scan, fearing a brain tumor or something crazy would show up...but I was advised my ct scan was normal. I sat and cried in the hospital waiting area, not knowing if I'll ever see again. And if the experts cannot figure out what's wrong, no one, can, right? So I am a little past 4 days at this time, no longer taking the medication, I have missed an entire week of work, cried to everyone I know and anyone who would listen and asked and begged for prayers from everyone. I really appreciate this post and what coldcold posted, gives me hopersonally that I may be able to see again one dayear, and hopefully soon. I am sure my husband, son, dog, family, coworkers, bosses and friends are all ready to have the normal me back...and I should never take my 20/20 vision for granted again, if I ever get it back. Best wishes to you all. Mommyblogger24_7 at live.com

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by Ghostkitten666, Sep 18, 2016
I've only been on this poison for only 2.5 weeks.  My doctors insisted I take it to stop my migraines which were causing small bouts of sudden hearing loss and tinnitus.  I started with 25 the first week, 50 the second week, 75 the third week, and so on.  Clearly, this doc. had no real clue how to treat migraines or deal with this med.  

I first started getting flashes of light and tremors while trying to fall asleep.  I call the doctor and they are like "oh it's just your migraines hun"...my migraines never produced these symptoms.  Then I started losing my low frequency hearing and had a droning, diesel engine tinnitus whenever I woke up in the morning (they were supposed to be treating that in me, that is why I went to visit them BECAUSE THEY ARE EAR DOCTORS).  Turns out the medication was slowly dehydrating me even though I was taking in the recommended amount of water.  Then I started having memory lapses, unusal fatigue and feverish feelings, and now of course the early stages of glaucoma.

Nothing is wrong with my vision *yet* but my eyes are bright red, are swollen, and they hurt from behind.  I will not stay alive on this earth if I go deaf AND blind.  No way.

I think I need to throw a molotov cocktail into my doctor's office.  I swear these birdbrains are trying to kill me or maim me for life.  They don't think before they act and they have just been throwing meds. at me!!!

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by Kirk10786, Sep 30, 2016
Been taking this medication since January now for idiopathic intercanial hypertensian. Slowly been increasing the dosage. When my nurologist bumped the dose up to 70mg I had a few days where I lost my prerifiral vision, also my eyesight became worse and headaches worse and also pressure behind my eye more painful. I told him and he said it must be migrains so upped my dose to 150mg. Now every time I wake up in the morning I get light tracing, it's like I am having an acid trip. Also the pain and pressure behind my eye is worse. No headaches though.  I would speak to my nurologist but he discharged me the same day he increased my medication last time! Went to my local doctor and she has refered me back to nurology but there is months waiting list to be seen!! Slightly worried now reading this thread, what should I do?
Note please excuse my spelling and grammer I am dyslexic, sorry.

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by MrMcGoo2, Oct 05, 2016
I was prescribed Topamax for migraines and after 1 dose began to lose my eye sight. First I had a terrible headache,  then things got very blurry. By the end of the day I couldn't navigate my own house and the pain in my head put me in the ER. The doctors were perplexed for hours thinking I was just having another migraine. After four hours and almost 100% blindness a young doctor looked at my eyes and saw there was something wrong. He took the ocular pressure and it was at 60(psi or whatever they measure the pressure in your eye with) He called in a eye specialist immediately and they were able to bring the pressure in my eyes back down. The pain was gone but my eye sight took almost 5 weeks to return to somewhat normal. On top of that whatever they gave me to take to keep the pressure down in my eyes and treat the glaucoma, gave me severe kidney stones. I was back in the ER just a week later and had emergency surgery for severe kidney stones. All from 1 little tested drug called Topamax. At the time, I was one of two people in the US having this reaction. Now I read this and can't believe how many people had the same problem. There is a definite conflict of interest between big pharmaceutical and the FDA. Lining each other's pockets. Educate yourself! Read who's paying who to get these dangerous drugs fastracked on to the market. It's criminal and no one wants to take them on. Sick SOB's
Doctors need to be policed more as well. Most of those drugs and SSRI's are dangerous as hell and half of America is taking them. My eye sight has never fully recovered and some days it's 20/20 and some days I can't make out who people are two feet away from me. Good luck everyone. Do your own research. Try everything else including natural remedies. Stay away from Topamax. Don't let the pushers talk you into it.

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by PMMHM, Mar 22, 2017
Dear Dr. Kutyrb,

I am so grateful to have come across your post.  I was recently prescribed a weight loss combination of both Phrntermine and Topamax.  I have not started the Topamax,  or do I plan to after reading your cautionary posts.  However, after being on 37.5 mg. of Phentermine for two weeks, I realize that my blurry vision - especially in my left eye - may be caused by the Phentermine.  Do you happen to know if Phentermine has similar negative effects on eyesight as the Topamax?

Your posts are tremendously important.  Thank you so very much for sharing.


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by emmanueldr, Jun 16, 2017
! I suffered from Glaucoma, my eyes were almost ruined, I sought help from DR thompson wiliams,  with his drugs, prayers and instructions I was treated and now i am free!pray to God and follow the instructions of Dr Jose, he has the perfect solutions for most issues concerning the eye.He is such a genius dealing with brain and eye issues, you can write to him on ***@**** He will surely be able to help you

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by MonzNz, Jun 24, 2017
I have been taking Topamax for nearly 12 months, for hemiplegic migraines.  A few weeks ago, I started getting an awful pain behind my R eye and getting blurred vision.  I had an eye test, and was told I needed reading glasses.
I have received my glasses now (12 days later) and my vision has got worse in that time, so my new glasses are not even that effective.  The eye pain is a lot worse.
Today, there is almost no vision in that eye (without glasses) and very blurry, with them on.

I have also had increased slurred speech, trouble with balance and concentration.

Is it possible to be side effects on this drug after almost one year?

I've been to my doctor and the hospital once, and feel no one is listening to my concerns!

I have been referred back to my neurologist, though that could take weeks and I'm so scared that staying on the Topamax during that time could be doing serious, and permanent damage to my eyes.

I am in New Zealand

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by sooty1, Aug 05, 2017
This is such a wonderful yet disturbing thread and I am so thankful for Dr. Kutyrb to actually want to help us as patients of this awful medication!  My doctor prescribed Topamax as a migraine preventative which I have been taking 100 mg a day - 50 mg in the morning and 50 mg at night.  I have been losing my hair daily, I cannot stay awake - almost falling asleep while driving and have these weird peripheral visions mainly in low light - I notice them more in the door ways, like wavy lines.  It is so hard to explain but my eye sockets hurt as well.  I have been taken Topamax for about 6 months and have lost 35 pounds but not the reason why I started taking it.  I went to my doctor this week and was in tears telling her about my vision issues, my fatigue, my hair loss and basically feeling like a zombie and she told me it sounds like a Fibromyalgia slump (which I do have Fibro) and that she doesn't treat the eyes and blew that part off - but wrote me out a prescription for RITALIN for my fatigue and sent me on my way.  Didn't even once listen to me when I asked if these might be side effects of Topamax - didn't even care one bit!  Told me to take Rogaine for my hair loss. I will not fill the prescription for Ritalin - I am the most calm person you will ever meet and will not put another medication in my body while trying to rid myself of this nasty drug I am already on!  I am weaning off the Topamax the same way I built up the dose.  I pray that the vision issues go away but will make an appointment with my opthamologist to be on the safe side.  Thank you Dr. Kutyrb for caring about us as people and not as my doctor does who looks at as another bonus in her pocket from the drug company when she gets to write another script.  Shame on her and shame on the manufacturer of Topamax for allowing this drug on the market as well as the FDA!

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by Colleen259, Sep 23, 2017
I was recently prescribed Topomax ins only paid for Generic for a still undiagnosed problem. Muscle spasms around my ribs have hardened my muscles and taken the natural curve out of my spine. Seen every kind if Doc except Neurologist which I will be seeing in November.  Never a headache person. After few days I started with lots of crazy side effects  sharp pains in my left eye a few times a day. as the dosage increased it became a steady pain along with headache light sensitive. Other side effects pins and needles all over my body. Weakness  and pain is muscles, brushing teeth became painful in arms. Loss if coordination , major confusion. Words and letters jumbled when speaking and writing. After 3 weeks I went off the Topomax and the eye pain started to decrease. Then they switched me to Keppra and after a few days my eye pain started back so stopped that after 10 days. Went to eye doc and have inflamed cornea and am in drops and ointment. Not taking anything right now and pain, pressure and headaches slowly decreasing. Luckily he said my angles are wide open.

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by duchessewing, Feb 21, 2018
I realize there are bad side effects with medications... ALL medications.  I have a couple rare disorder/diseases that require a few medications due to a lot of things that are going on with my body.  I have mastocytosis and I have ADEM. I have a lot of unruly mast cells in my body and I have lesions on my brain, one of which is a large one on my pons that is interrupting communication to my body.  As well as having fibromyalgia, raynauds, livedo reticulitis, spacticity, twitching/jerking of extremities,  I could go on but I wont.  I have neuropathy that is not like most peoples, it is an electrical zapping (not like the diabetic neuropathy, tingling/stinging in the feet and hands) like being zapped by an electric fence all over my body from within.  My insurance will not cover Lyrica (300 mg) (which did not do a very good job in the first place, made me foggy and lazy and fat), and I have had migraines my entire life.  So the next best medication was Topiramate (Topamax). I have been on Topiramate for over 3 years (275 mg) and the only side effect I have noticed is my hair has gotten thinner. My migraines did reduce as did the neuropathy (migraines reduced from 4 days a week to one day on weekends). I do still have migraines though so my neurologist (just recently) increased my Topamax to 400 mg.  I still have not experienced any difference.  I am in my mid 40s.  I do see cataracts on occasion when I have been staring at a computer for several hours, but if I haven't I don't see them.  So I can not say that it is the Topamax because cataracts are very common after your 40's and I have had glasses since I was 13, plus astigmatism.    So while it is great to warn the public of bad side effects (because people should be informed).  I feel people should also be informed of the good as well.  The Topamax has also decreased my back pain from my herniated discs/stenosis that I have as well, as I have had to go without it due to the pharmacy not having any and my back pain increased. I would have to say that predisposition and genetics might possibly play a role.  Also, it is not a bad medication for everyone.

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by JustAguy1982, May 01, 2020
My eyes were doing pretty good.. started Topemax, 3 days in and started having eye pain. Kept taking it three more days. They advised me to stop. Week later they told me to wait a few days and start back up on it. Went to a visit with eye doctor and cornea and pressure looked okay but he couldn't explain my pain. He too encouraged me to start back on the Topemax. Really aggravated as I feel it is the Topemax, but doctors in my area do not believe in side effects. The doctor that prescribed it is a 100 miles away as I live in a rural area. 2nd day back on it, and eyes are hurting worse, again.

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