Topamax and Another Acute Glaucoma Attack - Almost.

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.

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.

HI I TAKE TOPAMAX FOR MIGRAINES IS THIS WHY I HAVE BEEN HAVING PROBLEMS WITH MY EYES.

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.

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

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..  

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.

What will Topamax do to eyes that already have high pressures? Can it increase your pressures if you suffer from ocular hypertension?

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

do you have any info on a procedure of healing optic nerve for vision? or re-attachment?

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

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

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?

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....

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...

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!

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.

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.

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).

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.

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.

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.

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.

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.

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.

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?  

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?

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.

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.

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.

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.