The Wandering Mind


Topamax Causes Kidney Stones

Posted in Migraines by wandren on 10 September 2007

I read a couple of years ago, when my father was first prescribed Topamax for his migraines, that the drug had been linked to increased kidney stones in patient who take it. When the subject came up again recently he told me that his doctor told him it was because the drug decreases thirst, so people tend not to drink enough water.

When my father had to be hospitalized for another kidney stone last week, I wanted to find out if what the doctor said was true. I don’t trust this doctor because he recommended that my father take Imitrex whenever he felt like a headache might be coming on, and prescribed the maximum number each of pills and injections that the insurance company would pay for – which clearly causes rebound headaches, and because, when Imitrex quit working on my father’s headaches (rebounds – duh!!) , he put my father (who already has a propensity for producing kidney stones) on a drug nicknamed “Dope-a-Max,” that is known to cause kidney stones… Arrgh!!

From WebMD, “Migraine Drug Ups Kidney Stone Risk.”

Based on the results of blood and urine tests, treatment with topiramate increases the risk of forming kidney stones because the drug causes systemic metabolic acidosis and changes in urine chemistry.
http://headaches.about.com/od/medsarticlesandinfo/a/TopamaxStones.htm

…it is thought that Topamax® increases the risk for calcium kidney stones by making it easier for calcium to bind with phosphate (forming calcium phosphate stones).
http://kidneydiseases.about.com/od/kidneystones/a/topamax.htm

Serious risks associated with TOPAMAX include lowered bicarbonate levels in the blood resulting in an increase in the acidity of the blood (metabolic acidosis). Symptoms could include hyperventilation (rapid, deep breathing), tiredness, loss of appetite, irregular heartbeat or changes in the level of alertness. Call your doctor immediately if you get these symptoms. Your doctor may want to do simple blood tests. Chronic, untreated metabolic acidosis may increase the risk for kidney stones or bone disease.
http://www.topamax.com/topamax/index.html

By the way, if you go to http://fda.gov and search for “Topamax,” you will see that McNeil got slapped by the FDA in about2004 for not fully disclosing all the risks and side effects associated with Topomax.

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25 Responses to 'Topamax Causes Kidney Stones'

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  1. Michelle said,

    I am almost feeling better after reading this article. Thank You.

    I had just started my break before fall semester started and woke up in HORRIBLE pain. I had never had a kidney stone before this but I knew something was seriously wrong. At this point I stopped the Topomax without my GP’s approval and all at once.

    I have been on a high dose of Topomax for a few years now for neurlogical pain 1200mgs per day. My GP had rave reviews about this drug and said as long as I am not having any symptoms he would keep increasing it. I read the list of side effects and most of them were tolerable. On the Topomax website it does not show under the heading Side Effects the more serious dangers of the drug. I searched the website again tonight and their is a secondary link to the “more rare” symptoms.

    My doctor had just increased my dose 1400mgs right before this happened.
    I also had a decrease in my potassium level last year that caused me to be in bed for 3 months. It can along with thyroid issues. I am wondering how these symptoms relate to Topomax??

    So this article makes me feel relieved to find out what the cause is, but I am furious with the many ER doctors and my GP for not catching this before hand.

    I suspected this drug to be the cause of the problems I had last year although the doctors tell me it cannot have anything to do with this drug.
    I had at least 8 doctors say it was not the drug causing my problem. Even now ER doctors still say it could not cause the kidney stone.

    Why do we trust doctors with our lives? Some of them seem not to care about their work no more than a kid at Burger King waiting for their shift to end. I want to call the doctors stupid but I am the naive, the one who should have done more research, listen to my insticts and kept asking about the drug, I am the one who should have known better.

    Frustrated But Thanks again!
    Michelle

  2. "Pebbles" said,

    Good article. I am finally off Topamax after 7 kidney stones within one year. 3 surgeries and two ER visits. My GP is the one who recommended coming of the drug. I originally thought it may be my cholesterol medicine doing it as I had a bad reaction to one of the drugs we tried for that earlier.

    I constantly asked my Urologist to find a cause to my stones but never got an answer. I think he was padding his kid’s college fund with my frequent visits and surgeries.

    I agree with Michelle, if you want to really find out the causes to your medical problems, do some research. The internet is full a valuable information. My opinion is that most doctors think the genral public is too stupid figure stuff out for themselves. They are only human and are only doctors because they spent years reading the information that is now out there for everyone.

  3. wandren said,

    I’m glad to read that more and more people are taking responsibility for their own health care by researching their symptoms and causes, educating themselves about their medications, and looking for correlations between what they put into their bodies and how their bodies react.

    This is far and away the most popular article I’ve posted here. Your replies add to the body of testimonies about this drug and let me know that the information was helpful to you. Thank you.

    As a word of caution, I remember reading some posts from epileptics who hated the side effects of Topamax, but thought life without it was worse, so you should always make well-informed decision about your healthcare.

  4. robyn said,

    I am currently recovering from a 9mm kidney stone. As soon as the urologist came to see me in the hospital, the first thing he said to me, “you know what is causing your kidney stones?”

    As soon as I got out of the hospital, I called my neurologist and she told me I was about the 3rd or 4th patient she had heard from in a couple of weeks from topamax/kidney stones.

    I was taking 600 mg per day for epilepsy. In case many of you do not know it, there is a blood test to check your level of topamax in your system. Therapeutic range is between 5-20. It seems like Michelle’s dose being more than double mine is extremely high, when I take it for its first line indication.

    I head back to the doctor this morning for a follow-up and suspect that I may have gallstones as well. My doctor is transitioning me off Topamax and onto Kepra XR. Maybe it will be better, there are no indications that it raises uric acid.

    Best of luck to us all.

  5. Karen said,

    Topamax is a nightmare. Turned me into a bumbling idiot and left me with kidney stones, a hepatic hemangioma, and a huge distrust for pharmaceuticals in general. I have chronic migraines and have tried every class of drug out there with out relief. The funny thing is (not funny haha) that Topamax was the only drug that helped my migraines…figures.

    • ML said,

      Please, please, please go see a natural health person in your neighborhood. My husband and our daughter both suffer with headaches. My husband has had migraines and our daughter has the kind that last for days! She has been on Topamax (and has had kidney stones) and my husband was put on ametriptylene or something that almost killed him! Finally they gave it a try and both our on natural supplements like magnesium and the headaches are under control. My husband also found out he can’t have anything with MSG or chocolate! But from headaches every week to less than 5 in a year…..we do whatever! My daughter was on Topamx for less than a year..she lost so much weight we had to take her off of it, but it was a while later when the kidney problems started. I read that it can be 5-6 years after being on Topamax before you get kidney stones!

  6. amy said,

    I started topamax 3 weeks ago. I take 15mg per night. I did increase it the 2end week like my doctor told me to, to two pills per night. After the 3rd night, I began to read comments and info on the web, called him up, and told him I am scared. He told me that if I am apprehensive can take something else. I will see him very soon again at his office. I am still only taking one per day and still scared of getting a kidney stone. I also take imitrex if I feel any pain coming on. he told me to do this because every once in awhile if I do not treat the “little” headaches they turn into the horrible migraines that last 2 days and no amount of imitrex will help! Therefore, I am not afraid to take imitrex often now. I used to be but I am no longer…I just need to find something else to take instead of topamax. I am disappointed

  7. Nicky Kelly said,

    Where to start. I have taken Topamax for essential tremor, but unlike a lot of you I have only been taking 25mg- 50mg and I only took it for a period of a year-18months or so over 5 years. I had terrbible insomnia, suppressed thirst, hyperactivity, depression you name it I had most of the side effects – was willing to try anything as was the only drug that suppressed my symptoms of eseential tremor.

    I had always had a pain in my groin on my left side on and off for a few years and visited my General Practioner a couple of times and the first was told had pulled a muscle in my hip and the second a bowel spasm, as the symptoms did not present with kidney stones APPARENTLY. I have never been told to drink more water or that there is a risk of kidney stones ??????????????????????????????????

    Well to try and cut a long story short, I saw my Neurologist a month ago and he told me that Topamax would have caused my Kidney Stone. A week later I was at the holspital re test for my kidney stone and told it was 2 inches in size and my kidney no longer works ????????????????????????????????????? I have to have a nephrectomy in the next few months. I have mentioned to the Urologist that my Neuro had said that Topamax had probably caused my kidney stone and they said not if it was medicaton related that there would kidney stones in both kidneys. Well I know that this med has caused them 1) There is no history what so ever in my family of kidney stone or kidney problems and the few times I have taken this med I always had a dull ache in my groin area . The only time my GP ordered blood tests (2-years ago) it came back with a GFR count of 59, but I was not referred as my re-test showed that my function had gone back to normal.

    Now I cannot take anymore neuro meds for the forseable future and I have to have major surgery. How would I go about finding out if this drug had anything to do with this, as my GP and Urologist are denying it and they have said that I have been really unlucky and it was probably and undiagnosed UTI that has caused this.

    I am totally at my wits end and totally distraught and depressed at the moment !!!!!!!!!!!!!!!!!!!

  8. Kyle Tyer said,

    Fantastic wordpress post, I will be sure to bookmark this post in my Newsvine account. Have a great evening.

  9. susie said,

    I’ve been on Topomax for about 5 years now for bipolar disorder. I spent 5 hours in the ER today for pain control for you guessed it… kidney stones! It’s my 15th or 16th one in about 4.5 years . I’ve had to have 5 lyptothrypsies (not sure on the spelling) because my left urether is badly scarred, it seems even the smallest of stones gets stuck and grows. My biggest stone has been 1.2cm. Currently I have a stubborn one stuck in my bladder and another one coming down my urether from my right kidney. Oh and the best news! I have three more! But it’s as you all have mentioned, the various specialists completely deny that Topomax could have anything to do with the formation of kidney stones… My nephrologist has suggested I decrease salt by half (check), decrease or stop consuming dairy (no longer drink milk, nor eat yogurt and cut cheese by half), only eat meat once per day, no bigger than fist (check). I did this and I’m forming more stones than ever… I’m at the point where I don’t know who to listen to anymore.

    • ML said,

      I have read that kidney stones can apear 5-6 years after being on Topamax….my daughter has had 2 already and she’s 25 yr. old. Shea was on Topamax less than a year when she was 16-17 yr. old Her first stone was at 22 yrs. of age. Again get off of Topamax

  10. Michele said,

    I too was on Topamax, and took myself off of it cold-turkey (yeah, yeah, I know, bad thing to do) in February of this year. Had just had 2 ER visits for an 8mm kidney stone (my third of about 6) and pretty much had had it. Needed to have this stone surgically removed as it was too large to pass. I have been plagued by kidney stones for the last 4 years or so, which I firmly believe I started forming AFTER I went on Topamax for my migraines. I NEVER had stones before. Now, fast forward 6 months: at my last check up with my urologist, not only did I NOT have any new stones, but the ones that were remaining have all DISAPPEARED!!!! I am 100% confident that Topamax caused my stones. I did nothing these past 6 months that would have made those other stones disappear, other than go off of the Topamax. I am sending all the information I could get off the internet to my urologist, as he was very surprised. The neurologist I am seeing currently is not the one who first prescribed the Topamax, but I will be telling her about these events at my next appointment. I am sure she will also be very surprised.

  11. Kari said,

    So sorry to hear of everyone’s issues….makes mine seem very trivial.

    Hoping you won’t mind if I ask if anyone has heard of Topamax causing gout since it can raise uric acid levels?

    Thanks and I wish you all the best as we try to get off this drug.

  12. lisachelton said,

    You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch, or call 1-800-FDA-1088.

  13. Trish said,

    I am a new user of Topamax. I have been taking it for about 5 months. I was prescribed the medication for migraines and also to help with with obsessive compulsive disorder (to help slow down the thoughts) It has already helped me with my migraines. The OCD nothing yet. But……I have already been in the ER with a kidney stone. I had no idea what was happening to me because I had never expierenced pain like this before or a kidney stone. All my meds were discussed and nothing was mentioned aboutTopamax. I was told to follow up with a Urologist. I called my Primary Care Doc and she just said we will just see and watch what happens. So when when I saw my Psych Nurse Practitioner, who prescribed the med. I explained to her what had happened, she said yes Topamax can cause kidney stones. I was Pleased she didn’t brush it a side. There are some Practitioners out there who do know what they are prescribing and thier side effects. We have not decided to stop the med yet. Im so pleased not to have MIGRAINES right now!!!!!! Not sure what to do??????? Trish

  14. lisachelton said,

    I’ve been reading recently about the “Specific Carbohydrate Diet,” which explains how acidosis is caused by the fermentation of undigested carbs in the gut, particularly those from grains, which contain anti-nutrients called lectins… I wonder if that diet will help people who take Topamax.

    • Kay said,

      Probably not. Topamax itself alters the blood chemistry making making calcium and phosphorus bind. Regardless of what you eat, or drink, it’s not a fair fight. It’s like going on a liquid fast to detox by only drinking vodka.
      I drink tons of water, consume no dairy and here I am, with a lovely little kidney stone. I’ve been in pain for days and just had it confirmed by CT scan. My doctor, however, did tell me to drink lots of water (did) and knew instantly that it was probably a stone. I had been at 50mg for two years, I guess it was a matter of time.

  15. Cathy said,

    Taking Topamax 100 mg. daily over 4 years for migraines.Last month rushed to E.R with 3cm. kidney stone.Horrible pain!!I have reduced my dose to 50mg. daily.I do use Imitrex &naproxen sodium as needed.Next I will go down to 25mg. & get off it.It also causes Glaucama which can cause loss of vision.My doctor had said,don’t worry about it!!Now I’m getting him to get me Botox.Used to get it…now it is F.D.A. approved should be able to get it back & ditch the topamax.

  16. Cathy said,

    Forgot to say I am also loaded with gallstones….loaded.Have no symptoms yet.Wonder if the topamax did this?It did help my migraines & helped me keep my weight down…..not worth the side affects.Gotta get off it….

    • Amanda said,

      Topomax does not precipitate the formation of gallstones-entirely different process required kidnet versus liver..Are you drinking the significant amounts of H2O required along with your dosage of Topomax? As you incrementally increase the dosage of Topiramate you must also increase your water intake as well. I ahve been on Topomax for almost 3 years and have nenver had a kidney stone nor any indication of one-I drink inordinate amounts of water and make sure that I never reach the stage where I am thristy.The anti-convulsant impacts on the kidneys-the manufacturers provide this infrmation quite clearely (at least it is avaibale as such here in New Zealand).
      My gallstones (all 500 of them) were removed through a laproscopic colycystectomy-I would ask my doctor(were I in your position) about the impact of the drug upon the increased formation of stones or likelihood of bilary colic to be sure.
      Take Care, Mandy

  17. Taunya said,

    I am on my 3rd or 4th episode of kidney stones. I have them in both of my kidneys. I have been on Topamax 100mg twice a day for migraines. I have been through multiple ER physicians, a urologist, and my own very excellent internal medicine doc. It took my counselor (a nurse :))) – it takes a nurse to save your life!!! :))) ) , as she was taking my history, to tell me that my kidney stones were likely linked to the Topamax. I just about fell out of my chair. Number one, I am a nurse. I felt a little stupid that I didn’t do enough research to find this out on my own. I had way too much faith in the healthcare system to take care of me. I do know that when I get dehydrated I throw stones. But this last one, I was not dehydrated. Very scared to go off Topamax as it has been a lifesaver with the migraines…. and to the above post who is on 1200mg of Topamax!!!!!????? How in the world do you function???? This drug definitely “stupifies”/slows you down….

  18. Cathy said,

    Its been 4 months since the kidney stone,My gallbladder began to act up real bad.Had it removed a month ago.Enlarged & loaded with stones.I’m down to 25mg daily of topamax & pretty much ready to go off all together.Got my botox back had it by my neurologist last month.So far not bad with the headaches.I am on a no-fat diet due to the gallbladder.Lost 8lbs & I believe the no fat has helped with the headaches.Eat lots of chicken,fish,rice,veggies & fruits.No fat ice cream as a treat.

  19. Sara said,

    Thanks for the info.. I just had my first 2 kidney stones still in the kidney. I went off Topomax and tried Verapamil. I felt horrible, I retained fluid and had headaches all the time. I am using the above information to try to drink and eat what ever beats the calcium kidney stones. I am hoping to beat them b/c I feel for me Topomax really helps. My urologist was not overly concerned that I was on the Topomax… not sure if this is good or bad. My neurologist was but he is willing to work with me. Good luck everyone migraines and kidney stones both stink!

  20. Amanda said,

    I have been on Topamax for over two and a half years at a dosage of approximately 75 in the morning and 120 mgs at night. I have only just now developed a kidney stone. This is because in the last few months I have stopped being so diligent in maintaining the high H2O intake needed to prevent the development of stones in the kidneys whilst on Topiramate. I take the drug for severe pain-neurogenic pain syndrome which developed after my brain surgery for an Arnold Chiari Malformation decompression and craniotomy. The drug changed my life. Bloody marvellous. What a difference-able to function-to work-to exist without pain. I titrated the dosage carefully and am very careful about what I eat and drink and how I live. Oh I am also taking the anticoagulant Warfarin-you know it as Marevan in the US. Take Topamax like the drug warnings tell you to and you will be able to use it. it is not a bag of jelly beans. You must change your life to use this powerful drug.


  21. i just recently got off topmax & i found out that it causes kidney stones. im now on lamiictial xr i got a trial packet to try out…

    & we went to church. northland & i got in soo much pain,,
    crumled over pain
    i have had this pain for awhile but now its super bad usually
    it goes away & im good but this past one lingered
    on
    for 3 days…
    im going to phone the docter today. & make a appoinment
    to go in


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