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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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Topamax and Another Acute Glaucoma Attack - Almost.

Aug 09, 2008 - 95 comments
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Topamax

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topamaz

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topiramate

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glaucoma

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blindness

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acute glaucoma

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narrow angle glaucoma

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flomax

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flomax urgency frequency

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tamsulosin

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kutryb

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seizures

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myopic shift

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drug side effects

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adverse reaction

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vision

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vision loss

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Migraines



I hope anyone who uses Topamax for any reason is fully aware of the serious risk of acute narrow angle glaucoma.  I had read several articles about it but saw it firsthand last week.  As usual on my quiet weekend off I got the dreaded call from the emergency room, again.  This time about a woman on Topamax for 7 days who seemed to have lost almost all her vision 12  hours after increasing her dose per her doctor's instructions.  Some quick thinking sparked me to ask if she could see up close and lo and behold while she was blind as a bat in the distance, she could see the tiniest print about 6 inches in front of her nose.  She had developed an acute myopic shift from a choroidal effusion which pushed the lens/iris diaphram forward.  Fortunately, God was on  her side because she was smart enough to stop the Topamax and go to the emergency room before she developed an attack of acute narrow angle glaucoma (symptoms severe eye pain, headache, nausea, vomiting, almost complete vision loss.)  Her ocular pressure was actually only slightly elevated and with cessation of the Topamax, her pressure returned to normal in a day, while it took over a week for her vison to return to normal.  It was extremely impressive the way the lens moved forward initially.  After a week, the lens moved back to normal position and the eye looked completely different as if from another person.  It was really something I will never forget.  She could have gone blind if she hadn't stopped the drug and gone to the  emergency room.

So, if you are taking Topamax or getting ready to increase you dose or considering starting it - please, please take my advice and remember that it can cause sudden worsening of your vision, and if an attack of narrow angle glaucoma starts, you can develop severe eye  pain, extreme headache, nausea, vomiting and nearly complete loss of vision.
Next on my list of least favorite drugs - Flomax - the only drug I know of that actually caused it's own completely new syndrome - the formidable "Floppy Iris Syndrome" nemesis of cataract surgeons everywhere.

Michael Kutryb, MD

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by HR_PuffnStuff, Aug 09, 2008
Wow, I was on Topa for migraines for about a year. I always had sort of a pain/pressure feeling when I would rub my eyes. Sometimes my eyes would feel sore (for lack of a better word). I went to an opthomologist and got a complete eye exam since my doctor was worried about glaucoma. I got a perfectly clean bill of health there, but I recently went off the Topamax (about 1 month off now) and my eyes feel totally normal now....no pain and no pressure at all. So even though the doctor said my eyes were fine, I can't help but think those symptoms were related to the use of Topa. I'm so glad your patient got help before the worst case scenario played itself out.

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by narcy, Aug 10, 2008
I happened to notice the article about the use of Topamax for migraines. I was put on Topamax for Bi-Polar disease and the drug almost killed me. After 3 broken noses, a cracked open cheek bone, and the back of my head cracked open I realized I should not be taking this drug. As unfortunate as the situation was my psychiatrist whom I truly trusted, was amused and laughed at me. Did you know that Topamax also can cause loss of conscience and kidney stones? I did not know this, but most of all my psychiatrist did not know either. You probably think oh well and sorry you got hurt. But actually it really does mean alot to me because I was born with a bi-lateral hair lip and cleft palate. It took years and years to try and fix my face with lots of surgeries and pain. But it only took 3 months for the falls I took while taking Topamax  to take all that away. Since my psychiatrist was deffinitely negligent when he ignored all my questions about Topamax and actually told me to up my doseage. I was a very involved patient when it came to my mental health issues and if my psychiatrist had taken me seriously I would not have had all those unnecessary accidents. I'am very angry about it and would love it if someone out there would go after this psychiatrist? I'm sure I'm not the only patient treated this way. He should not be able to get away with it.

Melody H.

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by pinklady42, Aug 10, 2008
HI I TAKE TOPAMAX FOR MIGRAINES IS THIS WHY I HAVE BEEN HAVING PROBLEMS WITH MY EYES.

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by summer63, Aug 10, 2008
Thanks for the information.  I will be increasing my dosage in probably about a week.  My doctor wanted me to increase in 3 days but I am not ready yet so I will probably wait until next weekend until I increase it.  So this is good information to have to watch for.  My doctor did tell me about the kidney stones and the possible physchotic (sp?) episodes so I am taking it slow and watching things carefully.  I am taking it for migraines also.

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by Michael J Kutryb, MDBlank, Aug 10, 2008
You will definitely know if you are having a problem.  Vision will be VERY blurry - there will be no doubt - you will know.

MJK MD

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by cait08, Aug 10, 2008
i take topamax for seizures... i dont have too many problems with it. when i first started it i did, like weight loss & being irritable but most of my headaches disappeared although lately they have returned.. i dont have much trouble with vision. and the kidney stone thing scared me also so i started drinking only water about a year ago or at least cutting out all sodas to try and prevent them the best i can..  

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by kikicoates78, Aug 10, 2008
My mom was put on topamax for weight loss, she was dx with breast cancer & had a masectomy. Well they wouldn't do reconstruction till she lost like 35 more lbs so her oncolgist actually prescribed it. My mother is also diabetic. Does that put her at greater risk? Love her heart she dosen't need anymore problems. She is on 100mg once a day, she has been taking it for 6 months now, and is almost at her goal weight.

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by slightlybroken, Aug 11, 2008
What will Topamax do to eyes that already have high pressures? Can it increase your pressures if you suffer from ocular hypertension?

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by Michael J Kutryb, MDBlank, Aug 11, 2008
Probably no effect on the pressure unless you get the myopic shift and narrow angle attack.  So there is not clear estimate to the risk - maybe 1 in 500??? Just a wild guess - so don't take that for anything other than a pure guess.
MJK MD

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by NEEDTOKNOWY, Aug 11, 2008
do you have any info on a procedure of healing optic nerve for vision? or re-attachment?

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by Vessel4god, Aug 11, 2008
I've been on Topamax for about 6mnths, and was recently diagnosed with MS, also diabetic.  I had been in to see my Opthanlogist because I was having extreme eye pain, double and blurred vision, and was loosing vision in my right eye 9just would come and go).  i was taking 75mg of Topamax in the morning and 50mg at night before bed.  In Nov. 2007 my vision was 20/20 in both eyes no problems, I got severe headaches, and vision would get blurry every now and then, but since being on Topamax for seizures...I have light sensitivty issues, and all this other stuff, my vision has gotten dramatically worse in the last 2mnths, and every 3weeks I go back to the eye dr (opthamologist) my vision has gotten worse, he diagnoised me with Optic neuritis, and slight APD.

I just stop taking the Topamax for the last 3-4 days, my headaches are not as severe, but my eyes still hurt badly, very heavy feeling, but can't see far away, even looking at tv that's 15ft-20ft is very blurry, and hard to see.  Can topamax do this much damage this fast, I've gotten 3 different prescriptions for glasses in the last mnth, if that tells you how quickly my vision is getting worse.

Thanks,

Vessel

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by Suett, Aug 11, 2008
hi all,

the doctor describes exactly what happened to me a few years ago. the er docs told me to only decrease the topomax and not stop it cause they thought i would have a siezure if i stopped it all at once.

i could not see right for over a week..... the pschiatrist did not contact me for a week after my er visit. i was so upset.

it was a close call.......don't take it.

thanks dr. ktyrub

sue t


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by lulu58, Aug 11, 2008
I take Topamax twice a day because I had a very slight stroke 4 years ago, and the Dr. put me on Topamax. After reading all of these coments on it, I am very leary now of continuing with it. I do have migraines, but have had them all my life. I have even had surgery for them 3 times, so the Topamax is not for the headaches. But I did have to have cataract surgery last year, and now, my vision is getting blurry again. Could this be from the meds?

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by angie99, Aug 11, 2008
I took 2 doses of topamax and couldnt see a thing, after 1st dose some pain and distortion, then took next dose and woke up the next morning and could not see anything, no faces, no tv, no writing no nothing.....my sister is a RN and she looked it up on the internet and told me of the FDA warning and told me to stop taking it. Funny though, I called the ER about my problems and the doc on call said it would get better after more doses so keep taking it....then I called the pharmacy and told them and they said to STOP, and see my doc next day.

DONT take this drug....

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by lilclar, Aug 11, 2008
So how long are you supposed to use this for migraines?  I have been on this for 1 1/2 years without problems.  50 a day.  Not sure what to do here...

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by Jaybay, Aug 11, 2008
Topamax is the WORST medication I've ever been on for side effects.  My pain doc wanted me to try it, and naturally it didn't help the pain at all.  I first noticed my vision worsening just as you described - up close was OK but distance was utter ****.  Then my face, hands and feet went numb.  About the time my tongue went numb and felt like an unmoving, dry wooden block I told the doc what he could do with the rest of the topamax.  All of that took place over two weeks, and I was pretty much back to normal two days after giving it up - well, except for the continued numbness in my right foot three years later.  And no, I don't have spine issues.  :-)  Topamax also makes everything you put in your mouth taste like the bottom of an old and well-used cat litter box.  Nope.  Never again!

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by lilclar, Aug 11, 2008
These are horrifying.  I haven't seen how long you should stay on it before you wean off or switch.  Is there anyone with suggestions for this?  I am really worried about this, now that I have been on it for over a year and a half.  It can sneak up on you at any time, it seems.

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by fibro_fog, Aug 12, 2008
I had this same reaction after 10 days on Topamax!  It came on in the evening, beginning with distance vision, and we were strangely all making jokes about me not being able to see people across the room. I knew it was the Topamax so I stopped taking it, thought it would correct itself.  Within a few hours of onset I could only see clearly about 18 inches from my face. But by the next day I was completely blind, in great pain, and scared to death!

Doc said a few more hours and I would have been permanently blind!  If you have this reaction, please, please, stop the drug, BUT ALSO, head straight to the emergency room of a hospital - not a clinic, they aren't properly equipped (found that out the hard way) - there needs to be an opthamologist on staff.

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by fibro_fog, Aug 12, 2008
BTW, for those of you who have been on it for a long time, no worries - this particular problem is an allergic reaction that only happens to some people.  If it is going to happen to you it will be within the first two weeks (or so I'm told).

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by Sammie4258, Aug 12, 2008
Wow!!!!! So that explains the severe eyepain and blurred vision.  I was about to head to the opthamologist and a neurologist had told me to stop taking it.  She was not the original doctor who prescribed it either.  Since then, the pain has stoped and vision improved. I thought it was from chemo. But that was a year and a half ago, but still have some side effects.  But interesting the problem stopped after I stopped taking the topamax.

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by djarvisga, Aug 12, 2008
Hmmmm...I've been on 50 mg of Topamax once a day since Oct 2007.  I'm suppose to take it twice a day but I changed it to once because I noticed it made my thinking slower.  I do have numbness in my hands especially when I'm working out.  But now, out of the blue since 3 Jun 2008, I have been developing eye problems.  I've been to my dr. 6 times since then and have been on restasis for one month and just today, 12 Aug 08, I was put on 100 mg of Doxycycl, twice a day.  My eyes are extremely dry to where I can take the mucous from each eye and fill a small eye dropper bottle from each eye every single day.  The pain is unbearable but after 2 months, I am learning to live with it; however, I cannot see out of my left eye at all.  I wear glasses, my right eye is fine, but nothing from my left.  Now after reading all of this, I'm wondering if Topamax can be causing all of this.  I know I cannot see anything far off, I have to read with everything right up at my face.  I feel like an idiot when I'm at a restaurant looking at a menu and having it right up in my face and feeling like everyone is looking at me.  My eyes look like somebody has hit me and given me black eyes.  I can't go outside in the sun because it hurts my eyes.  I can't wear make-up anymore.  I can't wear my contacts.  I can't get my hair touched up at the roots, because I don't want my eyes near the chemicals.  I am just so very frustrated right now.

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by MrsNini, Aug 12, 2008
I have been taking Topamax 200 mg twice a day for 3 years now.  My doc warned me about becoming "slower" he said that it was just a side affect of the medicine once we get higher up in the doses, but I was okay with that because my head aches were so bad.  I get the tingleing in my hands and in my face too.  He warned me about that too.  He called them zings, but he never said anything about my eyes and to tell you the truth, I have been have some really strange things going on with my eyes.  I am having alot of trouble outside on sunny days.  My makeup really bothers my.  The other day it was like there was lint or something in my eye that I could see, but it wasn't moving.  I was driving and it made it really hard to see.  The bad thing is I am not sure what other medicine I would take to keep my headaches a bay.  I have tried all kinds and this was the only one that we could find that worked.

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by Momma_T, Aug 12, 2008
A long time user of Topamax as migraine preventative and it works wonderfully.  Current dose is 150 mg q.d.  The only side effects that I've noticed is thinning, weakened fingernails and thinning hair.  Several years ago I began having what my eye doc diagnosed as occular migraines: a bilateral blurring of vision, either upper, lower, right, or left sided.  It appears as wavy lines, such as heat rising from a road's surface.  It isn't painful and may last anywhere from 5 to 30 minutes.  No determination has been made to the relationship with Topamax.  Today began a new chapter in the visually bizarre.  As I was working at my computer I began to feel my pulse in my face and head, and actually saw what appeared to be shadows of my eye's blood vessels pulsing with each beat.  After reading this blog, I became very curious if this might be a new side effect of the Topamax.



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by Tink70, Aug 13, 2008
I take 75 mg of Topomax per day and have been on this dosage for about one month.  I had ocular pressure when I first started taking Topomax at just 25 mg but it went away with in the first month.  My body PH gets very acidic very quickly on this drug and I am also a diabetic so I have to constantly watch my water intake and double it.  I was warned about the side effects of this drug not by my PDoc (I take this medication for Bi Polar disorder) but by the PDR!  I looked this medication up for myself.  Just as everyone should do when starting a new medication.  The patient is the best advocate for themself!  The doctor should warn us but don't go blaming them for everything.  They are only as smart as the PDR in front of them and no one can remember the mass quantities of drugs that they prescribe so blame yourself if you almost go blind!  That side effect occurred during testing in a very small percentage of patients so it's not going to be something that the doc is gonna warn you about but from the posts - it appears that it warrants further review. So my suggestion is that the doctor on this forum do something that WE can't.  Take it to the proper people FOR US!  Take these posts and submit them to the FDA or the Boston Medical Review or the PDR or WHEREVER you doctors go for your info and get it on the books that this is more prevelant a problem then was thought at the time of approval of the drug by the FDA.  The benefits of this drug far outweight the side effects at this time for me so I'm not gonna stop taking it.  My diabetes will cause me to have glaucoma as well as the Topomax so whos to say which one is responsible if it happens? But for now, I'll keep checking my eyes like I'm supposed to, try to keep the dosage down to a minimum (theraputic levels are a matter of opinion in my book), stay in therapy, drink LOTS of water to flush the kidneys and do what I can to minimize the side effects.  But I certainly am not gonna blame my PDoc because the information on this drug was there for my taking and reading.

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by djarvisga, Aug 14, 2008
Just for the record, I don't blame my dr. or anyone about Topamax.  Everytime I get a prescription filled, I read the inserts my pharmacists puts in there about the medication and read all about the side effects.  Since I have been having such problems with my eyes the past two months (which started out with pink eye for 2 whole weeks that lead into a bacteria infection which has now lead into whatever I am going through now), I have just been doing alot of research on the internet and came across this forum.  Reading everything I did made me wonder if it could be the drug, but I someone doubt it since I would think I would have immediately started having problems as soon as I started taking Topamax.  I'm just so very frustrated right now with all the pain I'm in that I am just trying to alleviate everything possible and figure out just what in the world changed in my life for my eyes to be in such bad shape.  I do agree that the FDA needs to get involved with everything.  However, I do think that some doctors are prescribing it just because it's new.  I was shocked to learn that someone I know was prescribed Topamax for chronic back pain.  I was like, what?!?!?!  My mom just had major surgery on her back and never has her doctor suggested Topamax for her pain.

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by 21taters, Aug 14, 2008
Dr. Kutryb:

Thank you for this information.  About 3 years ago, I took Topamax for three weeks and then suddently had a horrendous multi-system allergic reaction to it (dermatologic, gastrointestinal, and respiratory).  

I now take another anti-seizure drug, Depakote ER (for migraine prevention), and just re-read the product circular.  While it does not mention glaucoma as a complication, I do have retinal thinning and am being evaluated every 6 months by a retinologist.  I am wondering if the Depokote could be contributing even though it is not documented in the literature?  

He suspects that even though my eye pressure is normal during the day, I have noctural headaches (severe hypnic headaches and hormonal migraines) that could elevate the pressures at night and cause damage.  But I was wondering if in your clinical experience you have ever witnessed glaucoma as a result of Depakote therapy?  

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by trinity007, Aug 14, 2008
Dr. Kutryb,
Thank you for the information.  I was placed on 100mg of  Topamax  2 times a day 8 months ago. I was having severe headaches, dizziness,and blurred vision.  I was diagnosed with Empty Sella Syndrome.  My neurologist did not make me aware of the fact that the dosage should be gradually increased.  I had to learn that information through research of my own.  Upon taking it, I immediately began experiencing blurred vision every morning.  this subsided after a month.  Then I started experiencing a heat sensation in my eyes.  This too subsided.  Then I started experiencing random periods of blurred vision without a headache, as recently as two days ago.  I informed my neurologists of all this and he still does not think there is anything to be concerned with.  

I am also taking 2.5 mg of Frovatriptan as needed for pain.  This medication makes me very drowsy, leaves me mentally impaired, and unable to drive for nearly 3 days.  

As of Aug,. 7th, I had a 2nd surgical consult with a neurosurgeon that specializes in pituitary abnormalities.  And Empty Sella was confirmed and he agreed that I should seek another neurologist.    

Should I be concerned about my eyes?

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by IndianaHeart, Aug 15, 2008
I took Topamax and Seroquel for a while. My eyes got so bad, I couldn't read the newspaper. It even happened after I stopped the Topamax and only on the Seroquel.

When I stopped them both, my eyesight came back.
They didn't even give me the warnings on those drugs.

People should be warned about these side affects and make informed decisions to take them. It's just not right.



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by Rob2008, Aug 15, 2008
I was given Topamax 3 years ago for "migraines".  (I really have a bone tumor in my head).     I did not take the Topamax,  and I'm glad I didn't.    I never take drugs unless I absolutely HAVE to.     I even avoid Tylenol unless things are unbearable.      A drug called Tequin, an antiotic, has nearly ruined my life.

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by kinder, Aug 16, 2008
I was prescribed Topamax in the hope's of decreasing the amount of migraine headaches that I had been having.  I developed a rash that was bright red, just like a severe sunburn.  It radiated heat and covered my body from my chest down to my knees.  I would itch so bad especially while sleeping that I began bruising.  I ended up in the ER where I was told that "Textbook does not mention hives as a reaction to taking Topamax".  I am not one to have a reaction to a medication.  This was a first.  Yet each medical personnel  who visited me that day at the hospital all had the same head scratching dumb founded look.  No way, this could not be the TOPAMAX!   There's a first for everything and that was my stand on the matter and now we must address my symptoms because I am just about ready to go out of my mind!  I was miserable!  Let's move forward and now!  They began an IV of a steroid and the rest is history,  To the this day I have not taken another TOPAMAX and will not.  I have been told by a few more specialists that TOPAMAX was for me!  That's when I remind them of my TOPAMAX Nightmare!  And yes, I get the head scratching look and the "TOPAMAX"?  I have come to the conclusion that I will be haunted by Topamax for the rest of it's shelf life.   I had a horrible reaction to Tequin soon after the Topamax.  I received the  same treatment from the medical world!  I feel like I am a freak of nature!  I wonder how often others have similar problems as I have had and never a change in information provided with the medication,     So, in the meantime there are patients out there who are having an allergic reaction to a prescribed medication and when they bring it to their physicians attention the doctor is quick to discount their symptoms. beacause "textbook" makes no mention of  any of the patients symptoms.  Is there any hope for needed changes in the healthcare world relating to the above?   Even if they would note each and every reported reaction to any and all meds.  Yes, more work for physicians however, less in the long run as they would be able to correlate that the health problems are in fact a reaction to a medication.  Hopefully my insight as a patient will help all aspects of the medical world.


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by cwortham, Aug 18, 2008
My main gripes about Topamax are the short term memory loss, so the nickname "Stupamax", and the awful taste in my mouth.  Since decreasing the doseage from 200mg to 100mg a day, that has been better.  I felt like I was parched no matter how much water I drank when I was on 200mg's a day and that metalic taste was unbearable!  I have become accustomed to it now and it isn't as bad since decreasing the doseage thankfully.  

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by delmars, Aug 19, 2008
Hello,  I took Topamax for 5 days and on the 6th day my vision became very blurry.  I went to the emergency room were they informed me that I was having a acute closed angle attack.  By this time the pain was insane.  The Doctor in the ER gave me drops to lower the pressure.  Nothing happened.  The ER was not properly equiped to handle this emergency.  They took me by ambulance to another hospital and did a laser iridotomy to realease the pressure.  My attack was a bi-lateral angle closure attack meaning that it happened in both eyes at the same time. It is VERY rare.  Anyway, by the time they got my eyes correctly treated it had been about 24 hours and I lost most of my vision in my right eye and 1/2 my vision in my other eye. Both eyes are ruined to this day. It is permanent.  PLEASE. find another medication to take for whatever your ailment is and if you run into symptoms go to the ER fast. When you are having an acute attack time is vision.    Scott DelMar

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by alagirl, Aug 21, 2008
Scott, if you don't mind my asking, how much topamax were you taking?  what dosage?

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by alagirl, Aug 21, 2008
Dr. Kutryb,

Is this issue something that typically happens early on in treatment with topamax, or early in increased dosage, or do doctors see it in long time users of topamax.  Also, is this always a sudden and acute vision loss, or is it ever a progressive issue?

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by Michael J Kutryb, MDBlank, Aug 21, 2008
It's usually either soon after starting it or soon after starting a higher dose.  My understanding is that Topamax has a sulfonamide molecule in it that makes some people have a sort of hypersensitivity reaction.  Basically you either react to it or you don't but there must be some threshold blood level that you must reach.

MJK MD

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by delmars, Aug 22, 2008
alagirl,

    They had me start on 50mg a day.  For some reason that was enough for my body to trigger an angle closure attack.  It probably isn't the same for everybody.  I will say though, if you are taking Topamax get to the hospital ASAP if you start to experience angle closure symptoms. Don't constantly worry about it but please stay alert to the signs.

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by nangi, Aug 25, 2008
I am 51 year old female, I have developed a scotoma in the upper half of the left eye since January 2007.(Altitudinal) In my Right eye too there is a visual field defect in the nasal half of the upper quadrant.I had episodes of transient blurring of vision for the last nine years, Though I have migraine i have never been on any prophylactic treatment for migraine. Doctors have diagnosed as I am having Low tension Glaucoma as my eye pressure has never been above 20. I am on Azopt eye drops twice a day and Lumigan Once a day. My neurologist asked me to do an Angio CT and a Brain CT Which were normal. Carotid Doppl;er studies and Echo Cardiography were normal.
I was put on Topiramate 25mg last week and I was asked to increase to 50mg from today. As I am a Miopic and I am on treatment for low tension Glaucoma though I do not have angle closure Glaucoma is it absolutely safe to take Topiramate. Please reply. I am so anxious as my vision is already deteriorated.

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by nangi, Aug 25, 2008
PS. Could you kindly add this to my above comment. while I was on Topiramate, this morning I developed pain in my right eye and my eye pressure was 15 in both eyes at 8 am, even after putting Azopt at 7am. Normally my eye pressure is 12 at this time before I started on Topiramate . Should I change to another drug for migraine prophylaxis?

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by trinity007, Aug 30, 2008
I have officially stopped taken Topamax.  Since my last post to this blog, I have been to the ER 2 times for the pain in my lower back and and left side.  It turns out that the reason that my left kidney is enlarged is because of a stone.   I did not have any problems before taking this medication.    A group of doctors consulted me in the ER and all agreed that my dosage of Topamax, 100 mg 2X's a day, is two much!!!

Upon further conversation, I learned that by neurologist was supposed to gradually increase my dosage to that amount.  And reading the rest of the blogs, I see that nearly everyone was gradually giving Topamax in doses of 25mg.   My neurologist started me at 100mg twice a day and I have been there every since.  This very upsetting to me, because my body has gone through HELL for the last nine months.  I have experienced all of the severe symptoms and his response was,  " your body has to adjust,".   I have been overdosed my the doctor.  I could have died.

How can I report the Dr?

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by denise035, Sep 03, 2008
MICHAEL J KUTRYB MD

i would like to thank you for saving my vision today. i to started topamak 7 days ago a very low dose of 25mg qd and was to increase to 25mg bid today. i have been feeling great for the past 7 days. when i got off work this evening i had some "hazy" vision, thought it was fatigue. as the evening progressed i developed sudden blurred vision. i have 20/20. being a nurse i knew enough to be concerned but did not want to over react. i did look up simple topamak side effects and did not see any vision related info so i brushed it off. i was going to go to sleep and call my p.c.p in the am or make an eye apt some where if it cont. i figured it would be gone when i woke up. as i laid in bed it really troubled me so i got on the computer once again and i found your posting. i knew then i needed to get to the er, asap. well long story short my pressure in both eyes was 50. i have been with an eye specialist for the last six hours doing eye drops every 20 mins, my pressure finally is at 31. they let me come home to get my daughter off to school this morning, with 5 eye drops in hand that i have to cont every hour and i am to meet the eye specialist at his clinic at 9am to see where my pressure is at. i do feel if i had not read your posting i would have fallen asleep and this doc told me i probly would have woken up blind with sever optic damage. so thank you so so much. for every one else please pay attention to ant vision changes with this medicine. i actually printed your posting out and took it with me so they would know where to start and you were right on it!!!
pardon my spelling- i have not gotten my vision back yet but hope to return to 20/20 soon!!!!!
denise

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by delmars, Sep 04, 2008
Thank god you caught it.  Your vision will return to normal. Probably with no damage.  When I had my Angle Closure attack from Topamax my pressure in my left eye was 75 and my right eye was 90.  Needless to say I sustained nerve damage and my sight is not normal. Anyway, I am so glad you caught it in time.  Make sure you keep your preasure down :]

Scott DelMar

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by denise035, Sep 05, 2008
SCOTT
please tell me you have sued some one for your eye damage???? yes my pressures have come down, my vision has not returned to normal yet but i am told that it will in a few days to a week. its off to the hospital again for me this morning for pressure checks. the doctor who is treating me has been wonderfull. he said i am his 5 case of this. what does surprise me though is most physicians arent aware of it. i know had i called my doc the night of my blurred vision he would have told me to come see him in the am, by then i would have had permanent damage to my optic nerve, which appears to have happened to you? i think doctors who perscribe this med need to know that the sudden blurred vision is a serious condition and if your patients report it they need to be directed to the er asap. i think when a new script is given to a patient they should be verbaly advised to watch for this. putting it in very small print, which you wont be able to read anyway, is just not enough. to add to that it does not even say to seek emergency attention for sudden blurred vision, just says stop the med and notify your doctor, my doctor would have told me to come see him some time the next day. when i reported this to the office, after my er trip, the on call doctor said she had never heard of it.
as a nurse and a VICTIM i feel something has to be done. even as a nurse, giving me more medical knowledge then your average person, i didnt realize how serious the sudden blurred vision was. if it wasnt for this forum i would have gone to sleep and woke up blind!!!!!!!!!!!!!!!!!! i have 20/20 vision and no drug alergies. i suffer from head aches, but at this point a headache here and there is better than being blind, so NO MORE meds for me. this was very scary and painfull!!!!!!!!!

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by Rachel9904, Sep 05, 2008
I am on Topamax 300mg a day, and have been experiencing eye "shifting" in my left eye only. It is not painful, and is not blurry like everyone else's posts have said. Its basically like my vision shifts into a direction for a second and then its over. This has been going on for a few days and Im wondering if it is something to be concerned with. I have been on the Topamax for 9 months(at the same dose for about 4 months).
Thanks, Rachel

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by Michael J Kutryb, MDBlank, Sep 08, 2008
You would notice some serious blurry of the vision for distance if it was a true reaction.  I'm not sure about your shifting vision.  Maybe a very mild reaction?  Not sure if it is related.

MJK MD

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by delmars, Sep 09, 2008
Denise035,

   No, I haven't sued anyone. There is a class action lawsuit against the makers of Topamax that I will try to join.  The biggest problem I ran into was that when my vision wet blurry I DID go directly to the emergency room.  I waited in the waiting room for 7 hours.  After they got me in it took another 7 hours to diagnose the angle closure attack.  At this ER they didn't have any eye laser equipment so they opted to try to get the extremely high pressure down with drops.  They DID NOT have the drops on hand so they had to get some from the pharmacy. This all took 2 more hours.  The drops didn't help the pressure because it was way to severe.  They had an ambulance take me to another ER and I was there for another 5 hours before they decided what to do.  The "Laser room" was locked for the night but from the efforts of an ER doctor at the Hospital that is my hero he was able to find someone to unlock the room.  Finally after approx. 24 - 26 hours of 75 - 90 eye pressures they were able to give me a laser iridotomy in both eyes.  The pressure went down almost immediately.  For the next 10 days I almost lived at the hospital so they could monitor my progress.  I couldn't even open my eyes for 6 days because the light was to bright.  Slowly I could open them.  The pressure had reached a level that damaged my optic nerves and the muscle that controls my pupils.  My pupils don't contract and dilate anymore. They are no longer round like normal.  The right pupil is always large and the left is always small. They won't focus like normal and everything is blurry all the time.  It is not able to be corrected with glasses.  Am I bitter about the Topamax and the fact that in my case the medical profession let me down? You bet your A#% I am.  Will I get over it? Absolutely.  I have a ten year old son that still needs me and I still do trust the Hosptals and medical professionals.  

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by azimay, Sep 11, 2008
My vision in low light since starting topamax has a really weird effect!  It is not constant, but it has happened enough that it has worried me.  It is almost like the way an acid trip on tv is shown - has anyone else experienced this?  Is is only since starting the topamox at 50mg bid.

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by brownsug87, Sep 18, 2008
my partner is having eyes pains in both of his eyes and banging him all time and also all see burred things .b but the reason he thinks got glacoma is because he used paint on celling with oil an d turpintine


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by TC88, Sep 30, 2008
Hi,
I had been taking Topamax for migraines for 2 1/2 mos. at 100mg.  I had every horrible side effect in the book but my doctor insisted I keep taking it.  Finally I noticed my vision had been affected and I couldn't focus on anything within 12 inches of my face and distance was also blurry, just not as bad.  When I told my doctor (a headache specialist) he said it was totally normal and not to worry about it.  I called the Topamax line and they suggested I get an eye exam.  I called my doctor back and told him I wanted to get my eyes checked and he reluctantly gave me a referral.  (Actually, all this was relayed through the nurse as the doctor won't call himself even when asked, EVER.)  The opthamologist said there was no damage but I should stop taking the drug and he thought my vision should return to normal.  It has been three months since I stopped taking it but I still have the same vision problems.  I still can't focus on anything within 12 inches of my face.  I'm so upset about this but don't know what to do.  Obviously I don't trust anything the doctor says and I'm not going back to him again.  How long does it take for vision to return to normal?  It sounds like everyone else had no problems after a few days of stopping the drug.  Thank you for your help.  Traci    

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by delmars, Oct 15, 2008
Traci,

    Has your vision returned to normal yet?

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by CDream, Nov 06, 2008
Dear Dr. Kutryb,
     I must make a decision quickly as to what IOL to have w/ cataract surgery.  Everything I find on the internet seems to be pushing ReZoom or Rstore.  Some statements seem to tell me not to use a multifocus at all.  My doctors office is pushing Crystallens.  I'm 58 and I read that my eye muscles won't handle Crystalens as I age.  I also find little positive posts on Crystallens.  Please help ! -  David

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by rodman901, Nov 25, 2008
Dr. Kutryb,
What was the starting and ending dosages of topamax that the woman was on in "Topamax and Another Acute Glaucoma Attack - Almost," dated Aug 09, 2008 10:05PM?

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by Michael J Kutryb, MDBlank, Nov 27, 2008
I think she went from 25 twice a day to 50 twice a day when then problem started.  It was prescribed for weight loss.

MJK MD

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by rodman901, Dec 02, 2008
Dr. Kutryb,
   I have a similar case as the lady here in the blog. I was given Topamax by a major pharmacy inadvertently and cause me to have advanced glaucoma and has lead to a diagnosis of legal blindness by my treat eye doctor. My question is rather or not you would be willing to review my medical records and offer a second opinion or independent medical review of my records? I would truly appreciate it if you would reply to my inbox at your earliest convenience.

Thank You

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by gemini1976, Dec 02, 2008
I thought  was going crazy about Topamax, but in all honesty I'm not. I took Topamax for 2 days for severe groin pain, which was prescribed by a pain doctor, and literally thought I was going blind. My Vision was so horrible for those two days, I was seriously afraid of getting up just to move around the house in fear that I might trip over something.   I knew first hand what it was because Topamax was the only meds I was taking. Why is this stuff still on the market if it causes people to lose their vision? Some one explain.  I"m about ready to get a lawyer for this.

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by SLS68, Feb 20, 2009
Dr. Kutryb,
I have been on Topamax for about 19 months for bipolar/anxiety.  My initial dose was 100mg but I lost too much weight so I went to 75 mg.  I did notice a bit worsening in my vision but was turning 39 and eye doctor said my eye sight was normal for my age.  Two months ago my doctor had me return to 100 mg Topomax.  Four weeks later I started getting daily headaches and eye pain and pressure.  A week later I developed a cold and the symptoms went away so I thought they were due to sinus pressure.  I still went to the eye doctor and she said my eyes were fine.  Last week the eye pain, pressure, and headaches returned.  I have it constantly and I am really worried it is due to the Topamax.  My psychiatrist said to taper off the Topamax but he does not think this is what is causing it.  I have never had eye pain and pressure before.  My vision is okay but feels very strained if that makes sense.  Should I be worried and stop the Topamax immediately?

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by Tina2026, Mar 07, 2009
Dr Kutryb, I have been on Topamax for about 6/7 years for chronic daily headaches. Until reading the posts on here I hadn't realised that Topamax could be the reason for my visual problems. I have had an eye exam today, where I was told I have scaring on my left eye and also starting on the right. The doctor said to come back and see him in a years time, then he will be able to tell if it's getting any worse, but if I see floaters or flashing to go directly to A & E.
My visual problems consist of blurred vision (like constantly looking through unclear eyes), headaches, and this is a weird one double vision but only at night, i.e. when the sky is dark anything bright appears double, like two moons, street lights are also doubled as well. As my headaches seem to be getting worse shall I come off the Topamax and if I do will my eyesight get better and how long will it take for the Topamax to get out of my system ? I find it odd that I mentioned to the  doctor at the Eye Hospital that I am taking Topamax and he made no comment. I would welcome your advice.

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by matd22, Mar 07, 2009
I have been on topamax for a few years now. The Eye doctor Dx me with Macular Degeneration 2 years ago, no signs of glacoma though. I do complain of a lot of floaters and I am very near sighted. I have the usual complaints/ side effects of topamax, weight loss, metal taste, dry mouth, unable to form or spell words. I was prescribed T for Migraines and it did help decrease them. I now only get a migraine once every 4-6 weeks instead of 2-3 times per week. The only pain relief medication that helps is Fiorocet when I do have one full blown.
My question is...if you were to have a reaction from the topamax would it be upon starting the medication and or increasing the dosage? At this stage of the game am I safe at continuing my level of 100 mgs 2 x daily without concern?? Thanks for ANY feedback.

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by Mississippi_RN, Apr 16, 2009
I experienced a really similar situation. I had been on Topamax for migraines for 7 days and doubled my dose per physician orders. I took 25mg in the morning and another 25mg at night. About 12 hours after the morning dose, I began to have blurred vision. Since I had been working on the computer for a few hours, I ignored this warning sign. Like the woman mentioned in this post, I could see about a foot in front of me, but nothing past that. After about another hour, I laid down and contributed the blurred vision to a migraine. In the wee hours of the morning I woke out and still had blurred vision. I then knew something was majorly wrong. I am an RN and immediately went searching for answer. My fiance and I found the FDA warning. I contacted my neurologist first thing the next morning, and he referred me to an ophthalmologist. I had narrow angle glaucoma, and my pressures were 30 & 34. I immediately discontinued the drug and used eyedrops to get my pressures down. My vision returned to normal in about 3 days, but still had iris displacement. Topamax, even in just 7 days, was starting to get rid of my headaches, but I would much rather see. Before starting this drug, PLEASE SEE AN OPHTHALMOLOGIST first.

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by phyrehart, May 20, 2009
My doc was on vacation.  I'd had been on topamax for about 2.5 months. The eye got really bad.  They felt like they were taken out of my head rolled in sand and then put back in.  When I call my doc to report what happened she was on vacation and the doc in charge told a nurce to sell me back and that I was supposed to continue the medication until my pcp returned.  I kept taking it for 13 full days with the steady increase.  I didn't know it was the medication.  I didn't know because I was not told.  That was in 2002.  It's now May of 2009 and my long term medical leave wants proof it damaged my eyes.  The problem is that it's not in the eye itself.  I have 20/20 vision.  I've never had an issue with my eyes before this happened.. I've had to be placed on permanet pain meds. I have to wear these funky huge dark glasses to keep out of light. I can't stand any light actually.  
I live in a basement with black cloths and blankets over the window to block out the light.  My eyes hurt when I move them back and forth and to read I have to use something to magnify the item I need to look at.  I''m even now becoming a member of the Maine Department of Labor Division for the blind and visually impaired to help me learn brail.  I can't move my eyes to read a book.
At first they wanted to say it was in my head.  LCSW, Psychologists, Psychiatrist that I've seen have all said this is not somethingin my head.  I'm a normal person that wants to work and wants to have a life.  
Now... The long term disability company says they need something physical.  Yet... there is nothing in the eye persay.  
I don' t know what do.  
They are canceling me and I will have to now pay for my health insurance and well, that's 400 a month.  
What am I do to.. What doc is out there that will even take the time to read the PDR and talk to my PCP that have dealt with me for all these years..
I'm so worried.
Thanks.

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by UKBlade, Aug 16, 2009
Topamax eye damage can take years to manifest [eyesight degradation, pain, permanent discomfort at best] dependant on dosage and body chemistry / tolerance.  I would respectfully suggest that anyone experiencing ANY kind of vision problems [and MANY other serious side effects] insist their Physician take notice of the extensive list of damaging side effect this drug can induce as specified in the accompanying literature issued with this drug... then start to look into the FAR greater side effects that are NOT highlighted and referred to on may websites throughout the globe.  
My friend was on this drug for 10 years at a dosage of 450Mg a day and it almost killed her - 5 doctors and 3 consultants did not associate this drug with the catalogue of medical problems she experienced and eventually said they were going to do nothing further to assist her [she weighed about 5 Stone at this point, was having agonising pain in her left eye and was almost blind in said eye, was having 4 of 5 Cluster fits per day lasting up to 4 minutes during each ICTAL phase and had been bed-bound for 4 months... oh, and she was having 95% of ALL the side effects the manufacturer claimed were possible.. and still none of these Doctors made any connection with this insidious drug].  
In desperation.[without knowing the backgrund to Topamax at that point] there was a clear association with the regularity of drug consumption and the effect - therefore she stoppped "Cold Turkey"... it saved her life although after 10 weeks she is still having Topamax induced saizures [her 'epilepsy' was an almost negligible experience of text book Drops and 15 - 30 second 'absences... but Topamax soon generated massive fits that progressively grew over the years.  The day after she stopped the cluster fits stopped and progressively diminished and are only manifesting when her Topamax damaged Pancreas releases the drug into her system.  This drug can take years to recover from [and for many people it can be almost problem free and a genuine boon to their lives] but I would strongly suggest that it is seriously assessed before consumption... this stays in your system for a LONG time and generates exactly the effects it claims to combat.
If anyone knows of anything which can spped up the process of detoxification from this contaminant, I would be immensely grateful to hear from you.

J Blade
alpha.sys@ntlworld.com

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by rlyons, Sep 08, 2009
no one answers these posts.   They know Topamax is very bad.  I suffered the glacoma , eyes dry and painful, and the blindness.  Eye pressures at 39 and drops not lowering them.  Two laser holes burned into my eyes to lower the pressures.
  I am still battleing the dry eyes, pain around the eyes, weird vision hard to focus, floaters, very very sensitive to light, and headaches.  All this after three years.  Ortho-m told my eye doctor they would cover my surgery at the time but of course backed out right after.  A week being blind, loss of near-sightedness, excruciating pain, headaches, ice pick headaches, floaters, weird to control vision (not always 20/20), dry eyes with pain, alot of medical bills, depression, and an insurance company that refuses to believe this is ongoing.    Thanks Topamax   , Ortho-McNeil you should be out of business. and Take State Farm with you for not believing.

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by rlyons, Sep 08, 2009
oh, don't forget deathly afraid of any perscription meds.

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by ComingApart, Sep 28, 2009
I have partial complex seizures plus migraines and Topamax seems to work. I have gone down to the very lowest dose that is effective because I also have low tension glaucoma.  Any of these brain meds are so tricky. I wish I could get all my doctors to talk to one another more. I would feel more confident about potential drug interactions if they did. I will be more vigilant after reading all this information. Thanks.

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by Liora, Sep 28, 2009
Topamax as a migraine preventative seemed to work for me but I felt foggy and my vision wasn't as sharp. I lost 10 pounds (the good news) but it came back as soon as I stopped taking it.

My husband was prescribed Topamax for severe migraines and cluster headaches and ended up 2 weeks later with acute pancreatitis and in the hospital as a reaction to the medication.

We both experienced metallic taste which was pretty bad.

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by debbi526, Nov 11, 2009
I also had the blurred vision.  I took 7 doses of 25 mg in 7 days.  On day 8, when I work up everything was extremely blurry.  The only thing I had changed in my life was that I  started taking Topamax.  I also read the FDA warning and headed straight to the clinic.  I was then sent to the ER.  It was very scary.  It has been 2 days and my vision has not gotten much better, but as I  also read here, it can take a week or two.  I read a study that said 85% of people who get this, get it within the first 2 weeks of taking itl  It also can occur when the medication is doubled.  I am taking eye drops to keep eye pressure down.  I had severe swelling around my eyes.  They were sensitive to light.  My head hurt.  The swelling and head pain have gotten much better already.  Thank you for this post.  The prescribing doctor and the pharmacist both stated than the main thing that I needed to look out for was drowsiness.  They did not say anything about the eyes.  However, it was easy to find info on the insert and on the internet.  It is very scary to realize that just 7 pills can't make me not be able to see.  I can/could only see about 6-10 inches in fromt of me.  I am so grateful that the FDA warning was on the insert.  I will report it to the FDA too. I hope all of you who had this do too, so that they have more info to show what this drug can do.

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by sarah_joy, Jan 11, 2010
i have terrible migraines for 27 years now and lately the attacks happen frequently and on longer duration.  i went to the neurologist who prescribed me with topamax.  After just taking the medicine for 3 days,  the headache was worse than before and i've noticed that i feel sleepy the whole morning and could not concentrate on my work.  I decided to stop taking it despite the doctors advice to continue taking it.  I was glad that i made the right move to stop if not, I might end up not only having severe migraine attacks but losing my vision also.  Thanks, Dr. Kutryb.    

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by HeatherChad, Jan 20, 2010
Dr. Kutryb,
I took 100mg of Topamax daily for about a year for migraines.  Very soon after starting it I thought my vision was not as sharp.  (I was -7.5 before Lasik procedure I had 9 years ago)  I didn't have any pain but the decline in my vision progressed over about a year so I went to my Ophthal (Dr. Marc Michelson) that did my Lasik to see if I should get an enhancement.  He was suspicious that it was caused by the Topamax and prescribed some glasses.  (only about a -1.5)  I have been off of the Topamax for 4 months with no improvement in vision.

Do I have any hope for returned vision?

Thank you,
Heather

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by Michael J Kutryb, MDBlank, Jan 20, 2010
If it was due to the topamax it will get better in a few days off the medication. YOu probably have simple regression or possibly even an early cataract.

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by Leesa_, Feb 15, 2010
Saturday was my mother's seventh day of taking Topomax. Topomax was prescribed for her silent migraines by a neurologist.  She has never experienced painful migraines but the frequency of her migraines was increasing recently.
She went to the emergency room Sunday morning for symptoms similar to those you described in your patient (changes in her vision, significant pressure behind her eyes). Unfortunately in her situation they did not have an ophthalmalogist examine her even though she told them she couldn't see and she has never experienced a migraine like this.  We took her to her ophthalmoligist this morning he diagnosed this problem (gluacoma??) as a result of her taking Topomax.  My 62 year old mother who is more like 42 currently can't see and has not been able to see since Sunday morning.  Her pressure was rated at 46 this morning.  It is now down to 30 in her left eye and slightly below 30 in her right.  She is being treated with several types of drops to help bring down the pressure vs. a laser procedure which could cause more inflammation.  We are to take her back to the doctor in the morning to determine next steps.  I am terrified she may have lost some of her vision for no reason.  The risks of this drug clearly do not outweigh the benefits in her case.  What other questions could I be asking her doctor to helps us make the smartest decisions in such a situation that calls for quick responses?  Are there other treatment options that we are not aware of?  

Thank you for your time,
Lisa

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by Michael J Kutryb, MDBlank, Feb 16, 2010
Take the drops as directed. The problem usually gets better as the topamax wears off.  The pressure will get better first. Look for it to come down in the range of about 20 hopefully in a day or so. The vision should improve later, maybe in a week or two.  A good test is to see if you can read up very close to your face - that is a sign of the intense myopic shift.  THese patients are usually terribly blurry in the distance but can see about 3 or 4 inches in front of their face.  Again, it takes getting of the topamax to get better and lots of glaucoma drops in the interim.  Hopefully no permanant damage will be done. That was the case with the last patient I saw with this. Please make sure the prescribing doctor knows what happened so they think twice about using topamax again.  Make sure your ophthalmologist is well aware of topamax side effects.

Michael Kutryb, MD

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by Prays, Feb 20, 2010
Dear Dr. Kutryb,
Hello Dr....I am the sister of Diane and the Aunt of Lisa who wrote to you on Feb 15 at 5:11. about her mother and Topamax. My question is why in the world is this Drug on the market if it can do this much damage. It may do alot of good for some....but I would like to know what person would like to take the chance of having permanant damage
to there eyes....or to even go through this ordeal....or even half of the things I just read in your comment boxes from all of these people....Besides talking to the  perscribing Dr. and her Ophthalmologist......and also the first hospital , which really didn't listen to her or call in a eye specialist to look at her......what else can someone do to let people be aware of this drug....I know that spreading the word helps...but who else do we write to, who well listen, I am asking your advice. This women is a very active person and takes very good care of herself always...her family is all pretty angry.....Thank You for your time and any more advice you could give us.  
Best  to you..a Sister who loves her Sister  Linda

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by Somewhere_in_California, Feb 21, 2010


Dear Dr. Kutryb,
Yes, I went blind but it happened during business hours. Although, my neurologist was not worried that afternoon about my blurred vision when I called her after reading that it could be problematic. And it was neglibible that I drov\\\\\\\\\                                                                               Later on though, she left later left me an urgent message to get to my opthamologist's. WIthin the hour I lost the last of my eyesight, and was fortunate enough to be given glaucoma drops-and be told that my eyes were about to rupture because of acute (and formerly non-existent) glaucoma. When my eyesight was 75% better the next morning, my doc diagnosed me as having "drug-induced glaucoma". As he said that normal glaucoma would not respond this immediately. He suspected that it was the Topamax and did online searches, including conferencing with other doctors-but still nothing].  
This happened about 6 years ago........and ever since I've occasionally followed whatever was to be said on the subject (not much).
However                                                                                                                                                                                                                                                                                                                                                       , I read not long ago that another patient did lose her vision a few years ago because she thought that she was overreacting-and went to bed-only to wake up completely and permanently blind.
I know of too many fellow migraine/autoimmune sufferers who need this drug. I'd only ask for the proviso that this be spelled out for all to see-so, that they immediately get their eyes checked for and why.
And as far as I know, the manufacturer does not stress the danger in clear terms.
As for the other woman who lost her site, the blog was a few years old, so I had no idea if she still followed it. However, it seemed excessively cruel to write to her and tell her that my vision was saved, while hers was not.
The sad thing is that this other is that if other cases have been like mine, they were preventable.
Thank you.

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by Michael J Kutryb, MDBlank, Feb 21, 2010
I agree with you that I think most doctors are not aware of the acute glaucoma side effect.  I recommend you write to the manufacturer to relate your stories.  If nothing else, the company needs to do a better job of educating physicians and patients.  I have even seen doctors prescribing the drug for weight loss if you believe it.  

Michael Kutryb, MD

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by Leesa_, Mar 11, 2010
Dr. Kutryb,

I wrote to you about my mother on February 15, 2010.  She has been receiving treatment for acute narrow angle glaucoma due to Topomax as you described in your patient.  While the prognosis was quite bleak that Monday, she has made better than expected progress under the care of her current specialists.  Her vision is better, but not what it once was.  She is going to have cataract surgery, which the doctor said might help some.  The doctor explained to her yesterday that her cornea and nerve healed well but her iris is/are still damaged.  Her pupils are still dilated quite a bit, and he thinks they will probably stay that way. Her eyes are so sensitive to light she has to wear sunglasses all the time, even in her own home.  

While I will be forever grateful her vision is restored more than we initially thought it would be, I continue to feel such frustration that doctors are not educated regarding the side effects of this drug and plan to follow through with your recommendations above.  I also feel such anger that my mother told both her neurologist's colleague that Saturday evening and the ER doctor on Sunday about what she had read online regarding Topomax and these side effects.  She put the information right in their hands and they ignored her.  Doctor's who don't listen to their patients are just as dangerous as the drug itself.  She lost critical time because they did not listen to her.  The ER doctor didn't even get her an ophthalmologist when she said she couldn't see. This did not have to happen and should never happen to anyone else.  

We pray she will still have a full recovery.  Time will tell...    Do you know of any research or case studies where patients suffered iris damage and possible treatments? Have you had any experiences with iris damage?  I am wondering what the possibilities are for her iris to continue to heal after 3 1/2 weeks of treatment.  I am wondering if there are other treatment options we can consider.

Thank you for taking the time to respond to my thoughts and questions.  You have no idea what your response meant to my family during such a traumatic time in our lives.

Lisa



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by mattsmom92, Jul 06, 2010
I have been on topamax for years. When I first took it I lost a lot of weight, then I quit taking it and have gained almost all my weight back. Since May '10, I have been having eye problems. It seems the light of day is too much for me. My eyes hurt and I at times have troubling focusing on things. So what is happening with my eyes and since I went back on it, why don't I lose any weight?

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by sketch66, Jul 25, 2010
Dr. Kutryb,
            
My name is Jim, my story is very similar to the one you described in the beginning. I to was prescribed Topamax for my migraines and soon after increasing my dose I started to lose my vision without any notice. It came on very quickly, My wife rushed me to the ER.By that time I was nearly Blind,  with my eyes bulging and fluid draining with really bad pain and vomiting. I even brought in the side effects of the drug Topamax and my wife outlined glaucoma. They told me I had a complexed migraine and sent me home with a shot of pain medicine. I moaned myself to sleep and my wife woke me that morning scared because my eyes were protruding out of my head. Rushed me to my family Doctor and they promptly rushed me to a Ophthalmologist. He dropped all other patience and did emergency surgery on me. He told me that I was nearly two hours from being blind for life.I have now been through all surgeries and now developed cataracts and had surgery for them and now have implants. To this day I can't see even close to what my vision was. I now wear trifocals and they still don't help much. And to top it off I'm a really good detailed artist and make a living off it. But now I struggle to see my work, just as I'am pushing these keys. I feel someone should be responsible for what has happened to me and others like me. I have called many lawyers and have not yet received any progress. I'm not out to make a fortune off a stupid lawsuit, I just feel someone should take notice of the seriousness and be reliable on the side effects of drugs, such as Topamax. It has changed my life magnificently...   Thank you, Jim!

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by jonniek, Aug 12, 2010
I was put on Topamax for the pain from MS.  It worked great for the pain.  My eyesite changed drastictly but I was told this was from the MS.
However, I just got new glasses every year.
The biggest problem I had with the Topamax was I lost my memory.  Words that I have said all my life I couldn't read or pronounce and my doctor took me off this drug and tried to put me on a drug to restore my memory.  I had very active dreams and would wake up exhausted so they took me off that drug and said oh well...thats life.
I accepted that until I read the side effects.  Memory loss is one as well as the vision.  I still have problems with memory and buy new glasses every year.    

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by anita2, Sep 05, 2010
My neurologist prescribed Topiramate for facial pain. I took four pills-1/day at bedtime starting 7/16/10. I went off the pill 7/20/10 because I was not having a good reaction to it.  My headache started Sunday evening 7/25/10. My distance vision was blurred, and my near vision perfect. This was totally opposite of what my vision should be. I had a terrible headache and took 3 aspirin and went to bed.
I woke up Monday, 7/26/10 7:00am and I could not see. I had a terrible headache. I went to emergency room, had a catscan, bloodwork and was told to see my opthamologist immediately.
I went to the doctor who, thank goodness, was only 1/2 mile away. She saw me immediately and said she had never seen this before-my ocular pressure was so high it had distorted the shape and caused the vision changes.. She left the office and came back with eyedrops to drop the pressure. She told me I would have been blind had I not arrived at the office when I did. We did 3 different drops and pills for 4 days. I saw the doctor every morning and slept for 4 days and could not drive.
My vision in left eye is still not sharp. My night vision was razor sharp-now it is blurred. I am still taking a drop for the swelling in the back of my left eye. It took 2 weeks before I could read for more than 15 minutes. I still(9/5/10) have pressure in back of the left eye and my left eye vision is still not back to normal. My readings are all fine, but the pressure is still felt.
Anita Rosner

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by Yummys1, Oct 22, 2010
Severe eye damage happened to me after being on Topamax for 9 days.  I had acute angle closure attacks bilaterally in both eyes with pressures up to the 70's.  This spring I had cataract surgery to both eyes as a result of the damage to my eyes.  My left pupil doesn't constrict completely causing problems with the sun and night driving.  Plus the replacement lenses are also a problem for night driving due to the large halos and glare.  The drug company wouldn't help with any of my medical expenses which were in the thousands of dollars and I had no insurance at the time.  I am a Registered Nurse and was actually working at the clinic of the doctor who gave me the Topamax.  When I called her that morning telling her that I was having a side effect she told me to go home and sleep it off.  When I told her I couldn't see to drive she told me to have someone drive me.  I had all the symptoms of bilateral acute angle closure glaucoma.  She should have sent me to emergency care immediately.  I lost several hours trying to get the correct diagnosis while literally being almost blind.  That cost me a lot of time and permanent damage - the Medical Director of the clinic said "she did nothing wrong."  She so much as never looked back, walked away.  I on the other hand have suffered the last 4 years with these complications and continue to have problems.   As a matter of fact I am going back to the eye doctor today to see if there is anything at all to help with these horrible halos.  I will have problems the rest of my life now.  Oh  the clinic did offer me a 10% discount on my bill if I paid them all at once.  Now if they don't think I am paying my bill fast enough I get threatening letters to turn me into collections.  I explained to the lady in billing that if not for treatment from this clinic I wouldn't have these bills.  I continue to have expenses related to the primary incident.


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by vicki3664, Oct 23, 2010
Hi, I was on topamax.ended up in the er.  It started with tunnel vision attack, then I saw lighting bolts and started vomiting. That was over a year ago. In my right eye I have dimming, grids are not straight, a lot of eye pain mostly photo phobia.The lights hurt so much.
   The eye doctors can find nothing. I have no idea how that is possable. I am in so much pain some days worse then  others. My life has changed. I don't know how to seek treatment if they can't find anything.
   I wasnt sure it was the Topamax  till this other doctor put me back on it and Ive been seeing auras and waking up in a lot of pain, and then it all came back to me. It had to be the Topamax omg. I started reading this and I see Im not the only one. Is there anything I can do to help myself improove my life?
                                                                 Thanks
                                                                              

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by Michael J Kutryb, MDBlank, Oct 24, 2010
Find a local ophthalmologist who will take the time to listen to your story.  It is possible that other factors are involved but your story does raise significant questions about a possible topamax effect.  Usually when an attack occurs there is severe blurring of vision, high eye pressure, eye pain and sometimes vomiting.  It is unclear to me if there are subclinical milder situations, just haven't observed them myself.

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by Jackson1974, Dec 01, 2010
I have been diagnosed with Bipolar Disorder type 2.   I do not know why psychiatrists put people on topamax.   Topamax has no known value for mood, and has been reported to cause depression for some people . Topamax also  has been shown to knock off the equivalent of about 20 IQ points in healthy people, and it is one of the biggest offenders of cognitive problems.  It does seem to make people feel dumb, down in the dumps, and now it can make u go blind!!  Go figure.

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by KittyMini, Dec 29, 2010
I was on Topamax several years ago for migraine therapy and it worked wonders. I lost a moderate amount of weight, my mood stabilized and I wasn't home sick with migraines any longer. After approximately 1.5 years on the medicine, I had brain fog so bad I couldn't do my job as a writer. Cognitive impairment? Try cognitive paralysis. I digress though...

I began taking Topamax again about 2 months ago due to increased headache activity that couldn't be controlled with lifestyle and/or reactionary medicines. I haven't experienced any of the side effects I'd had before, sans taste issues and initial drowsiness that wore off within a few weeks, nor have I had the weight loss. I increased from 25 mg once daily to 50 mg. During this time, I also began to take the brand name Topamax where before I'd taken generic Topiramate due to costs. The 50 mg dosage made me feel like a rabid dog - freaked out, anxiety attacks etc which subsided when I leveled back to 25 mg.

I then woke up last Wednesday and couldn't see very well. I'd had laser vision correction about 7 years ago and my vision was suddenly worse than before the surgery (very nearsighted). I've been treated for dry eye in the last year which caused blurry vison, but this was drastically different and didn't improve with dry eye drops. This was the holiday season and I was driving back from the in-laws when I suddenly could NOT see at all with it getting dark and rainy. I put on a pair of old glasses that had been left in the glovebox and was able to see enough to get home with my children safely.

I contacted my doctor who took me off the Topamax immediately and waited a week before making an appointment with the local eye clinic. Unforunately it is a small town and only employs optometrists who did an exam and found my vision was considerably worse than it had been when I was examined this past spring. She also said there was "stippling" on the left eye and a increased oil production, a cyst and quite a bit of obvious irritation. (Similar to blood vessel redness I get pre-migraine). She recommended glasses, checked the old glasses and said they would work and we could wait two weeks to see if it was simply more time needed to get the medicine out of my system. My pressure was 11 which she said was normal. This was yesterday.

I now feel like someone is pinching the heck out of the eyeballs, they burn like they are on fire and the whole socket looks and feels swollen. I can no longer see with the glasses that worked several days ago and has weird glare halos from the vision in my left eye and a fog that seems to move over the lens. I've made an emergency appointment with a city ophthalmologist tomorrow but am so nauseous I'm not even sure I can drive myself home from work.

I was on the medicine this time for 2 months before this happened. Now I'm slowly losing my sight at the age of 34. Any advice?



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by Faqspls, Feb 09, 2011
I was on Topamax starting 7 years ago, for about one and a half years. I discontinued mainly because I noticed that in that time I had barely been able to concentrate on reading or on conversations.I had attributed other symptoms (fatigue, brain fog, nausea, etc.) to the migraines, themselves.
I was 54 when I started taking the Topamax and still did not need glasses, though occasionally, in bad lighting and trying to read very small print, I'd use a pair of over-the counter magnifying glasses. About two years after starting the Topamax, I realized that, having discontinued the Topamax, I still was not reading much because reading was uncomfortable. So I got prescription glasses for reading and was reading again.
I got a new eyeglass prescription three years ago. After about 2 years, I noticed that the glasses were no longer doing the job as well, and went to an optometrist for a new prescription and also had a check-up by a neurological ophthalmologist. Both noticed that over the past two years, there had been a dramatic change in my eyesight...considered unusual. I'm wondering whether this is a long term effect of the Topamax.

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by neil957, Feb 27, 2011
Hi,  I was prescribe Topamax 25mg by my Nerologist.  After the first day, I notice my feet and toes became numb.  Soon after that I notice my vision became blurred.  I stop taking the medication.  My Nerologist stands by his decision, so now I am looking for a new Nerologist.  Thank God I stopped taking that medication!

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by kath914, Mar 21, 2011
My question is about my vision as well. When I went from 25mg to 50mg  I noticed I was unable to read well, even with my prescription glasses.  Went to the eye doctor and told him I was on Topomax, he did not seem that concerned, but he did do a routine eye exam. My distance vision had not changed just the reading. Is this just a coincidence or am I being paranoid??  It has changed quite drastically without any pain though.

Thank you for any information!!

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by WilliamBlake, Jul 08, 2011
We all know how important Topamax is especially for people who are suffering from migraine and epilepsy. And this result is quite alarming. If this is really true and more there’s a significant number of people who have experienced this, the right agencies should make their move.

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by LOLAMM, Oct 28, 2011
I was on Topamax for several months for sever migraines. I lost 32lbs. but, I  would get the tingling in the hands and feet and sometimes my face.  My short term memory was terrible. I had to write everything down. Then came major hair loss.  My hair is naturally fine and thin to begin with so this made things much worse.  My neurologist then took me off the Topamax an prescribed me with Verapamil. I just did a little research on this medication and it can cause hair loss as well.  Is there a good migraine preventative out there??? I get migraines a few time a week so Good medication is important to me!

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by Mskt, Oct 31, 2011
Hello...I am confused about my recent eye visit to an opthamalogist. He says I have no abnormal vision or nerve damage but wants to run a series of tests because he states I'm a glaucoma suspect. I just don't know if I believe him and think he wants to do this for insurance purposes. I tried to call several times to get more info about it but was first told I'd have to talk to him and he wasn't in. He never called and no other doctor  or staff member at the office would explain my chart. Is this normal procedure?
The one thing I did get was what someone told me was a weak script for driving:
+0.75-+0.25
PL-+0.75
95/120....IOP is listed at 17/Tono
I also wear weak reading glasses; 1.25 and only have a slight problem with seeing up close.  My Confrontation and Visual fields are also listed as Normal. (I requested my records and got one page). Any suggestions?
There is no famliy history. I am 48/wf

He gave me no explanation, just to come back!! I'm frustated.

Thanks.

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by butterflies763, Sep 06, 2012
i too got an acute angle attack from topamax it was horrible! i was on 100mg of this stuff and was actually on it for a few months. i woke up one morning with an awful headache vision in my right eye got blurry. i went to work had to leave because vision in my right eye got worse everything was fading in my right eye didnt know what was going on. i was vomitting and had headache from hell. neuro thought it was optic neuritis wanted me to go do iv steroids. i didnt make it to do those went to the er. my eyesight in the right eye i couldnt make out faces just the color no features very dim vision and it was just a horrible blur. at the er they told me to cover my left eye which was okay still and with the bad eye to read a vision chart i saw white and no letters nothing. i was told i had i had acute glaucoma and released after i was on an iv with meds being pumped in me and they made me an appt to see an optamologist within half an hour. optamologist said the right eye pressure was in the high 50s they didnt know waht was going on. got tons of drops put in my eyes to help lower the pressure they were worried my vision was damaged. once they got it under control i was sent home with 4 different kinds of drops to put in my eyes. i was told to stop the topamax to see if that is what caused it. it took over a month with the drops and lots of money coming out of my pocket for copay to the er visit and several visits to the optamologist before my pressure went back to normal. i still blurring in my eye to this day from this garbage medication and the back of my eye is still sore to this day from this whole fiasco. this poison should be taken off the market! i almost went blind from it and missed a ton of work and almost lost my job while i was having to recoup!

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by phyrehart, Dec 10, 2012
What I don't understand is when they say go off the topamax and your symptoms get better.  What I don't understand is the damage it leaves does not get better.  EVERY doc I've seen after this issue said my eyes should be better after stopping the eye pain.  Can you recover after glaucoma?    What about the other damage it did and since stopping the medication does not rewind the clock and what the darn medication did.  It might relieve the temp stuff but it does not reverse the damage caused.  At least not in me.. I've lived with this for 12 years now.  I have to fight daily to read, go out side, enjoy sunlight of any kind.  My issue because a huge issue. I have sever photo phobia.  Not a fear of light but a medical term used for those with light sensitivity.    I can't get away from it.  

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by tyson261, Dec 28, 2012
i was suffering from Glaucoma since 3 years,that almost make me half death human been, i was experience pain and rapid vision lost, and also my fluid pressure was very high, i have tried alot of drugs to make sure this deadly disease is out of my life, no drugs seems to work..
i heard about people giving testimonies on the internet when i was searching for help to cure my Glaucoma, many testify that ODUOSU G1 herbal remedy drugs cure there Glaucoma, i was shock i quickly contacted dr shant tami of Indian spell to prepare my ODUOSU G1 herbal remedy drugs to cure my Glaucoma and the spiritualist dr shant tami told me not to worry and told me what i will eat and what i will not eat since i want to used his herbal remedy drugs.
9 days later after using his ODUOSU G1 drugs white thing was rushing out like milk from my eyes and was seeing very well no pain, the eyes was bright and dr shant told i,m cure.. i even went to see my doctor in the hospital and my dr used Tonometer and Gonioscopy to test my eyes, and he told no Glaucoma again the my doctor was happy about my healing.. dr shant tami told me he also cure any type of disease herpes, hvi/aids, hepatitis, stroke and lot more
i urge you all quickly contact dr shant tami of ***@**** to prepare your ODUOSU G1 herbal remedy drugs to cure your Glaucoma and you testify as i,m testifying now.

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by tyson261, Dec 28, 2012
i was suffering from Glaucoma since 3 years,that almost make me half death human been, i was experience pain and rapid vision lost, and also my fluid pressure was very high, i have tried alot of drugs to make sure this deadly disease is out of my life, no drugs seems to work..
   i heard about people giving testimonies on the internet when i was searching for help to cure my Glaucoma, many testify that ODUOSU G1 herbal remedy drugs cure there Glaucoma, i was shock i quickly contacted dr shant tami of Indian spell to prepare my ODUOSU G1 herbal remedy drugs to cure my Glaucoma and the spiritualist dr shant tami told me not to worry and told me what i will eat and what i will not eat since i want to used his herbal remedy drugs.
9 days later after using his ODUOSU G1 drugs white thing was rushing out like milk from my eyes and was seeing very well no pain, the eyes was bright and dr shant told i,m cure.. i even went to see my doctor in the hospital and my dr used Tonometer and Gonioscopy to test my eyes, and he told no Glaucoma again the my doctor was happy about my healing.. dr shant tami told me he also cure any type of disease herpes, hvi/aids, hepatitis, stroke and lot more
i urge you all quickly contact dr shant tami of INDIANSPELL at YAHOO.COM to prepare your ODUOSU G1 herbal remedy drugs to cure your Glaucoma and you testify as i,m testifying now.

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by fisheyegirl, Aug 20, 2013
I know this in an old post, so maybe no one will read this, but along with the risk of an angle closure attack, (which is serious and scary) there is another ocular (vision) side effect we should all be watching for. It can be more benign, although a bit annoying if you are the one experiencing it. Topamax, along with some other anticonvulsants and psychiatric drugs can cause nystagmus; a tremor of the eye ball. Not a twitch in the eyelid, but an involuntary movement of the eye that can give you double vision. If you are experiencing this, tell your doctor. And get it checked out by an ophthalmologist. If the movement is vertical (up and down) it can be a sign of something serious, like lithium toxicity or other very serious muscle problems. If the movement is horizontal (side to side), its often not so serious, and can often be managed with a dosage change. But please, talk to your psych doc, and your eye dr. about any changes in your vision, or changes in the movements of your eyes. I just had to post this, as I have recently started taking Topamax, and have developed nystagmus myself. It was almost funny to me, as I have observed it multiple times in patients over the years. Now I finally know how it feels to have an eye that wiggles back and forth randomly and of its own accord. How does it feel? Wow. Its annoying!!!  But, its not dangerous, not for me, its usually at the end of a long day, and its brought on by fatigue. So I am not too worried. When it started, you can bet I was scared to death, though.  (But I will say, having also seen patients in with angle closure glaucoma, I was nervous to even take this medication. From what I understand, if you have an allergy to Sulfa drugs, your chances of an angle closure event and acute myopia are greater on Topamax, so keep that in mind as well. I guess the allergic reaction contributes to the increase in intraocular pressure)  Anyway, be safe, take care of you eyes and your health, listen to your bodies and talk to your doctors if you don't like your side effects.

Remember that we are our own best advocates!!!

-fisheyegirl
former ophthalmic technician

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by DeserTBoB, Feb 10, 2014
I was prescribed Topamax for an off-label depression condition in December, 2001.  By Christmas Eve, I was blind...Angle Closure Glaucoma, both eyes, pressures in the 70s and rising.  I understand that this stuff has caused many more cases of ACG since my mishap (at the time, 38 known cases worldwide) and was in the hospital for three days of painful laser cutting of DIs in my irises and other medicinal methods of reducing ocular pressure.  I regained enough sight after six months to be fitted with glasses, and went from 20/40-20/20 distant to 20/400-20/200.  The DIs in my irises cause multiple images, while the ACG have effectively killed my iris' action except for a small part.  I'm now facing cataract surgery in my left eye as a result of this mishap, and Kaiser Permanente is worried sick about attempting ANY surgery on my eyes.  THIS STUFF SHOULD BE OFF THE MARKET!  I wish I could have more hope for improving my vision, but I don't think it's ever going to happen.

The half life of Topamax is four days, and that was how long my extreme ocular pressure episode lasted, despite all types of therapy.  Once pressure went back to the low teens, the damage was done...permanently.

DeserTBoB



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