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Michael J Kutryb, MD  
Male

Specialties: Ophthalmology, Cataract Surgery, glaucoma

Interests: Ophthalmology

Kutryb Eye Institute - Titusville
321-267-2020
Titusville, FL
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Worst Topamax Glaucoma Attack Yet

Mar 20, 2010 - 46 comments
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Topamax

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glaucoma

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Pain

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eyes

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vision

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blindness

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cataract

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side effects

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kutryb



     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.

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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.

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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.

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by John C Hagan III, MD, FACS, FAAOBlank, May 04, 2010
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.

JCH MD

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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.

MJK MD

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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.

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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.

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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.

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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.

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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?

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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




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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
Jan

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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.

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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.

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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.

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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!

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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
***@****

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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.

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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
Hello,
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.


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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 :)

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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!!

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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.

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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.

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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.

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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 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.

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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.

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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.

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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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