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Topamax Side Effects

i've been on Topamax for two months now 50mg a day.. first month was great(no seizures YAY) and no side effects.. this second month though i've been having really bad side pains, constipation this whole month, back pain, and abdominal pain constantly.. i saw an internest they said i wasnt having an "infection" so that wasnt the problem so they wouldnt do anything for me so i went to another hospital and they said maybe my colone was irritated from eating lots of hot food lately so they gave me a laxative and stuff (sorry for the details) and it helped for a few days but i was still having the pains and after i stopped the meds the constipatin came back.. and its just worse.. i've also lost 10 pounds this last two months.. could these all be side effects?? i'm also on Keppra 1500mg a day but i've been on that since january and havent had any side effects from it.

Comments

Re: Topamax Side Effects

I've been on Topamax for a year and wanted to respond to your post. Weight loss is a well known side effect to this medication. I too, have had ongoing stomach issues, but to the opposite degree. That being said, I just looked up the medication again, and found that the side effects are separated into different categories. There's "less common", "more common", and "incidence not determined". That is further broken down into "more common" and "less commmon" symptoms. I'm not sure I'm allowed to post the link here. I found that your symptoms of back pain and constipation are listed under the last category, along with a whole host of other symptoms. This tells me that it probably is the medication, if you feel you've ruled everything else out. Be sure to drink alot of water. Perhaps you can add something to your diet so that you can counter that constipation issue. Hope this helps.

Re: Topamax Side Effects

hello i just wanted to ssay i have been on topamax for 3 years my docter started me at 200mg and anouther docter moved me all the way up to 1200mg the only side efect that i had was the memory and the weight loss i lost over 120lbs on it. but now im having alot of kidney trouble that might be related. i will let you know if it is.

Re: Topamax Side Effects

I think you should let your neurologist know what is going on because if the Topamax change is in order, the neurologist is the one to make that call.  All the things you have mentioned are known side effects of Topamax and the other docs should have considered that and maybe made a ohone call. (Docs won't always pick up the phone when the answer is that easy to get.)  Call your neuro in the morning, be persistant and ask if it is related.  The only way to really tell is to stop the Topamax and see if the symptoms improve.  Thn depending on how severe they are and what the neurologist thinks they were indicating ( flank pain can indicate kidney stones with Topamax, but I think unless you had underlying risk factors it would take longer than a month) it could also indicate a kidney infection in which case you would be VERY sick. Weigh loss is common. Bottom line is you need to let the prescibing MD know what the issue is because it very likely could be the Topamax.

Re: Topamax Side Effects

Weight loss is normal with Topamax. If it's a lot and your worried check with your neuro. The Rx can cause kidney stones if you have high intake of calcium or low intake of fluids. So that is something to watch for. If your family is prone to this that is why they normally won't put you on Topamax.

Re: Topamax Side Effects

Hello.  I've been on Topamax since around 2001--a little while after I began having CPs.  I hate it with all my heart.  It hasn't (unfortunately) caused the weight loss side effect for me, but some of the ones it has make life MISERABLE.  I am having lots of short term memory problems, and often have trouble saying what I need to.  There are times when I can see the word I want to say in my head, as if it were on paper, but can't get my brain and mouth to connect.  It is also causing constipation--another listed side effect.   All the water I drink because io the chance of kidney stones along with the constipation make me feel bloated all the time.

   The WORST side effect for me, though, has been hair loss.  I had lost most of my hair (85-90%) in an allergic reaction to Tegretol. Now, what little I had left is nearly gone, too.  I wear scarves whenever I leave the house.  Before I took any AED, my hair was so thick that it wouldn't fit into holders made for extra thick hair--now barely 2% is left.

Sabbo 

 

Re: Topamax Side Effects

Hi Sabbo
You have no idea how what you said just helped me just then - I can also see the word in my head and I can't get it out! I have tried to explain that to people, but they just say, 'well, I can't say I see words in my head.' They don't understand that I am trying so hard to make the word come out of my mouth that I can visualise it, but it just won't come. Great chunks of my life are missing because I can't remember them - my honeymoon, things my kids have done (and they are still only young, and so am I), movies I have seen, places I have been. I say to my husband, 'hey you know I've always wantd to go there,' and he says, 'we've been there, we stayed the night, you liked it.' And I can't remember any of it.
Those are the two worst - the words not coming, and the memory loss. Mix it with Dilantin and I feel like I am from another planet. I wish I was never diagnosed and could go on thinking I was having panic attacks - easier than feeling like my brain is disappearing out of my ears.
WW

Re: Topamax Side Effects

Topamax and lamicatal is my med combination for me now 200mg twice a day for both and I couldn't be happier. I have short term memory loss, some times struggle with my words (a bit tricky as a secondary teacher, so I make my students read more...good), though the constipation side that has been a side effect for every medication Ihave ever been on.

I have been on Topamax for 5yrs now and with the combination of lamicatal for about 3 years now. Once going onto topamax I lost about 20kgs which was great (I was taken off tegretol, and I made my neuro take me off...as I was starting to have absences again plus the weight).

 

Toni

Re: Topamax Side Effects

bumping for a friend

Re: Topamax Side Effects

hi there.
i'm so glad i found this tread!
i've posted a few times on this forum about auras.

i started topamax 9 weeks ago. i'm currently on 75mgs in the morning and 100mgs evening, and i'm on the way up to 150mgs in the morning and 150mgs in the evening.
i'm also on 1500mgs of keppra both morning and evening.
also i'm on trileptal -600mg in the morning and 900mgs in the evening.
the reasoning for starting topamax was because the anxiety i was experiencing on keppra was getting worse.

i've read above how you guys are feeling and i know what you are saying.
i am starting to get pins and needles in my feet and fingers. this is not bugging me really bad though.
what is bugging me is the tiredness and the general lack of motivation.
then i'm starting to notice how hyper i am feeling... how much i'm repeating myself, and then how paronoid i feel.
my memory is also getting much worse. and that depresses me.

do any of you know if you these symptoms ware off when you used to the drug??

i will only know if this will help the anxiety when i am completely off the keppra.
i am going to start comin down from the keppra when i am up to the maximum dosage of 150mgs morning and night of topamax.
do you know if the side effect symtoms ware off after you get used to the drug?
it seems to be helping me out otherwise.

So, generally, any chat would be a great help. Thanks very much.
Graham

Re: Topamax Side Effects

Hi, I have been reading everyones responses about topamax side effects.  I have been on topamax for about 2 months.  I have been having periods of memory loss and seizure. Do you ever see things or hear things sometimes I feel like I am losing it, because I can hear voices and there is nobody in the house with me.  This has only happen since I started to take topamax..  I am on 50mg in the morning and 100mg in the evening, but the seizures keep on happening.  I am so fustrated that I can't even do the things I used to enjoy doing. Besides the seizures i am also a diabetic and take insluin shots daily.  Right now my life stinks.  I'm really glad to have found this web site and people who have the same problems.

Re: Topamax Side Effects

hi i am new to topamax and was wondering how has it been going for you? do u experience things like weight loss, loss of vision and hair loss???

Re: Topamax Side Effects

hi i have neve heard things....yet....but i became more sensitive to noises...which is zoo hard...like i can listen to loudest music but i can't have my balcony open with all the outside noise, cars and the air conditioner ...weird...

Re: Topamax Side Effects

hi i have neve heard things....yet....but i became more sensitive to noises...which is zoo hard...like i can listen to loudest music but i can't have my balcony open with all the outside noise, cars and the air conditioner ...weird...

Re: Topamax Side Effects

hey how are you doing with ur meds now??

Re: Topamax Side Effects

hey how are you doing with ur meds now??

Re: Topamax Side Effects

wonder  im so glad you posted your comment because i do that with my wife all the time and i hate it i dont no about any body else but i had no one to talk to about the memory thing with the seizures memory loss and every thing i almost feel like sucide feel the wife and kids probally have a better and easier life with out me!!!!!!!!!!what did u do to help with memory???

Re: Topamax Side Effects

I also had that problem, seeing the word but not being able to say it. That was not fun when I was writing my research perspectus for my senior assessment final in college. I had so many side effects, and a lot of people do, but I must say, in the 3 months I was on it, I didn't have 1 seizure.

All the best, Christine

Re: Topamax Side Effects

Hi, Rodney, I just read that you have kidney problems because of Topamax. What kind of problems have you encountered? I am now waiting to see a nephrologist because of the Topamax that I have been taking for about 8 months for my simple partial seizures. It has caused the acid in my blood to rise. I'm not too sure what to expect but I would love to talk to you about what you are going through. I am so scared my kidneys may be damaged due to the Topamax. I have lost about 34 lbs and I am so tired all the time. I know these are all common side effects of Topamax but they are also signs of renal failure too. Now I have constant lower back pain and I am scheduled to see the nephrologist later on this month. I'm not sure how much more my kidneys can take. If you or anyone has any information I would greatly appreciate it.

Re: Topamax Side Effects

Tina Garofalo

Wow, this is really interesting!  I've been on Topamax 200mg for about 2 years to control my seizures and am happy to say that I haven't had any since I've started the medication but I must add that I have lost 25 lbs which on my body has brought me down to 108lbs.  I also just went through a colonoscopy,endoscopy and found out that I've had severe acid reflux for awhile now, but my doctor thought it could have been colitis because that and colon cancer runs stongly in my family.  After reflux meds didn't work well with the topamax my doctor switched me to Align, a natural probiotic to treat the Bacterial Infection she believes lives in my colon!!!!!!  Now Topamax does cause weight loss, diahhrea, etc but I find it interesting that you mentioned bacteria in the colon as well, as now I am being treated for that but need additional drugs to treat the swelling in my esophagas.  Topamax works great to prevent seizures however, I personally understand that the side effects of this drug have taken its toll on my body, I am weak and thin, cannot run like I used to in the summer time and have blurry vision about 60 % of my day.  I am willing to put up with this to avoid other drugs like Lamictil etc which cause me to feel like a vegetable but the colon problems have me in my gastroenterologists office every two weeks and are not fun.  Please keep in touch with me and let me know how you are doing and how they are treating you.  Best and Good Health, tina

Re: Topamax Side Effects

Tina..I have been on Topamax for over 4 years now, I think..I got off of Depakote as it put about 50 lbs on me and I ended up having a Duodenal Switch..the BEST weight form of weight loss surgery. I dont think I have lost any weight on Topamax..darn it. 

Anyway...it did a great job of keeping me seizure free....I only had ONE.  I was driving and hit a car at a red light I saw a man at my window motion to put my window down, but since it was night time..I didnt...I kept driving to the next red light and hit another car.  Then I drove home.  A few minutes later the Policeman drove in my driveway.  I remember him asking me questions like..did I live there..was this my home..my car..did I live alone...I remember wringing my hands continually...he was very nice and also asked me if I had any drugs or had been drinking or was a diabetic...I responded no to all questens..which was the truth. 

Then he told me he had called for an ambulance to take me to the hospital to have me checked out because he was worried about me and I remember being just fine with that.  I had never ridden one and was excited to see what it was like!  I am also very medical oriented and interested.

I vaguely remember walking toward it and the next thing I clearly remember is 2 days later in ICU in the hospital.  I woke ro find my arms battered and skinned and bruised. One vague memory was me lying on a table..restrained..and trying to raise up on my elbows and a very nasty man yelling at me to "LIE DOWN!!!!!

In the hospital when I woke up they told me I had ruined the whole front end of my Volvo...I couldnt believe it..someone else HAD to have stolen my car and done that.  I have never had an accident..not even a dinger.

 Anyway..again..back to .......NOW

my father died in January 09, my mother is home with Hospice..I live with her now.  I had been living with my boyfriend.  My life is quite the stressful life.  My daughter is 22 and is not living up to her end of the responsibility deal.  We have self pay nurses 8 hours a day, I have no free time.  I have no life.  My Mother is 94 and has no quality of life but is in a happy place as I ask her every day if she is happy.  She has no pain..she has Dementia.  Some weeks she says nothing..then she will chat for a day...then nothing for a month....we do everything for her.  She is so beautiful..so pink and pretty....and so healthy..but for her brain and thoughts.  It is so awful to watch such a wonderful social butterfly ...fade.

 I had another seizure 2 weeks ago..just as mysterious as the first..except I was home....maybe in bed..not sure..but I broke 3 fingernails off to the quick, the tub was overflowing and flooded the bath floor, matts and towels were in the tub, a mess was in the kitchen and ...I cracked 4 ribs, my occiprtal bone, tail bone, bruised both hips, and shoulders.  I am still very sore all over.  I am taking those hot patches, naproxen and oxycodone 10/500.  going for an MRI...in a few days....not driving for 6 months

I digress...The main reason I chose top write top YOU was because of your intestinal problems. With gastric bypass or my duodenal switch..there is alot of ..GAS..because of the altering of the intestines etc.  I tried ohhh so many gas relief things and probiotics over the years..even the antibiotic..flagyl..but one can get neuropathy from that and that is NOT worth it. 

SO..my cure is....VSL-3.  It comes in packets or capsules.  I use the packets as it is more economical and the dosage is better for me.  The packet is...450 BILLION live cultures.  there are 30 packets in a box and each box is around $75.  The way I use it is a packet lasts me 5-6 days..I sprinkle it on my tongue..take a swig of cold juice with a thin straw and then wiggle my tongue so the liquid forms the powder into a ball and then I swallow...that way it all goes down like a ball or un-coated pill into your stomach and doesnt just coat your esophagus

Try not to use the vsl people in S frisco..they want too much extra for the quick ship..shop around..I think they are called..... fubuo

www.VSL-3.com

 Also..If ......ANYONE.... has any help with my seizures please FEEL FREE TO WRITE  TO ME!!!

THank you to any and all who read this and I hope the vsl will help any who who try it as it surely has helped my gas problem...It is the most powerful probiotic on the market....Kasywasy

Re: Topamax Side Effects

Hi, my mom has had the same exact things happen to her as well.  She wrecked the whole front end of the car when she had an absence seizure whil driving home from work and didn't remember anything!  She never does though when she has seizures.  She blamed the wrecked car on me,she thought i stole it and wrecked it because she didn't remember what had happened.  After we all thought long and hard, she finally came to the conclusion she must have had an episode and hit someone.  Sure enough not much later she got a letter in the mail and had to go to court for a hit and run on a parked car and got her license revoked.  No one was hurt thankfully.  That first accident happened almsot 2yrs ago.  But a couple months ago she took it upon herself to drive a very short distance to the bank, after being seizure free for awhilevwe all thought it would be ok...  She took longer than expected and i started to worry then she walked thru the door and looked very scared and confused.  She then told me all she remembered was leaving the bank then she came to in a field near the house.  She saw no other cars or people around so she assumed nobody was hurt...  It's a very scary thing...  I'm sorry for your pain but glad you're still fighting!  My mom is on Keppra and Topamax and that has seemed to help except for some adverse side effects just recently...  Good luck!!!

Re: Topamax Side Effects

My name is Lindsay and I have been on Topomax now for 11 years and Keppra for 2 or 3 years I don't remember considering how many drug changes I've had over the years. Being on Topomax has really helped control my seizures as for your side effects I do Know that weight loss is a side effect of topomax and I suffered weight loss as well, I lost 20lbs in one month and didn't change anything in my eating or exercising habits. However after loosing the 20lbs I didn't loose anymore. If you continue to keep loosing alot of weight I would consult your doctor and neurologist and just keep eating a healthy diet and exercise on a regular basis. I started exercising and I've had fewer seizures and I feel a whole lot better in general. As for your other side effects such as side pain and constipation I've never had any of those due to the medication, however I'm not a medical doctor and I don't know all of the possible side effects of topomax and keppra. I would however find out everything you can about all the possible side effects of the two medicines and what can happen when taken together or with any other medication you may be taking, there might be other reasons as to why your having pain such as it may be something in certain foods that your eating on a constant basis or something to that degree. However, I would consult your doctor and neurologist and don't gorget to get a second opinion.

Re: Topamax Side Effects

I am so happy I found this website! I had no idea people felt the same way/ had the same symptoms I did (or even took Topamax haha). I have been on Topamax for about 3 years now and they are finally weening me off of it. I was up to 150 twice a day for my migraines (I'm on other medications for them too - Relpax, to name one). I lost about 30+ lbs in the process but stopped losing weight after that and have kept it off (thank god) even though I am now down to a much lower dosage (about 75 a day). Though Topamax made me get in somewhat control of my migraines, in the process I constantly lost feeling in my face and hands and my cognitive thinking is not what it used to be. All my friends and family tell me it is noticeable how much slower I have become. My reaction time is also terrible. On top of that, my hair also starting falling out in mass clumps and has not stopped. It used to be thick and full of volume and now it is fine and tangles easily. It makes me sick to think how much I have spent on hair products. I also have to be careful about drinking because (I am at a university where binge drinking is prevalent) Topamax isn't safe to mix with alcohol. I have found this out the hard way after having a seizure (I'm not epileptic) when I took Topamax one night and then had too much to drink.

 

I just re read this and I don't mean to scare anyone away from taking Topamax...without it I seriously would still be failing school and not being able to get out of bed because of my uncontrollable migraines. Just the side effects are a lot more severe than I thought they would ever be. :)

Re: Topamax Side Effects

All the stuff you mentioned is in the literature given to me with my bottle of Topamax as being adverse effects.  I'd really speak with the doc asap.

Re: Topamax Side Effects

My name is heather and i am new to this site but i have important information.topomax has ruined my life just as all the other drugs i have had to go through to still get nowhere with my seizures.doctors are so confused and havent seen anything like this.i have been on lamictal,depakote,keepra,topamax,etc...my seizures just keep cumming and what makes it worse is that topamax has ruined my memory.i am still intelligent but i forget simple things at time and i forget my past really quick.i repeat myself over and over at times because i dont know what i hav said.things have gotten so bad that since i continue to have seizures even on medication i have developed constent chest pains as well.dont play when it comes to your meds because i have had everything happen almost.i had suicidal thoughts on depakote with major weight gain and i have been hit with the depression that many epileptic people get.Lucky my son came out PERFECTLY HEALTHY!!!!

Re: Topamax Side Effects

Heather- I totally understand where you are coming from.   I have not had good luck with the medication either.   I have tried multiple medications as well and either they didn't work or the side effects were to hard to deal with.  Congratulations on your son coming out healthy.  I got lucky there as well.  I am not sure of course what type of seizures you have but I know my doctors have tried some new medications that they have come out with.  One of them is Zonegran and so far that is toleralabe, except for the rapid weight loss.   I have simple partial seizures at this point.  I started out with complex partial seizures but had a temporal lobecotomy about 5 years ago.  They have put me on Lamictal (got the rash), Topamax ( made my hands go so numb that I couldn't feel them), Keppra (I almost killed myself on) Dilantin (not good for women in the childbearing years).  I also take Tegretol XR that I haven't had too much trouble with but I have been on it so long that it is starting to affect my bones (it can cause early osteroporisis(sp) in women so they are trying to get me off of that but there aren't many other medications that they can put me on.  The only advice I have is to focus on living one day at a time.  I have to remind myself about that multiple times during the day especially on the days when the seizures rear their ugly head.  Let me know if there is anything that I can help with or if you have any other questions on medicaitons.  I might have already been on them.  Take care!!!

Amber

Re: Topamax Side Effects

how long have u been on tagretol,...i have been taking it(carbomazepine) for 21 years and i AM 21 years old and it made me worry when u said it can cause early osteroporosis

Re: Topamax Side Effects

I can't tell you how happy i am to have found this website. A little background-had a car accident at 17 (1997) and grand mal seizure (i'm 29 now).  Myoclonic seizures since then and only 1 other grand mal seizure in 2002.  I've been on so many different medications that i can't remember them all.  I went to the same doctor for years but he had alot of patients and unfortunately never really had time for them all. I had myoclonic seizures all of the time and my hands shook so bad that i couldn't write for years. I had horrible depression, entered and was pulled out of college. Finally went to another doctor (she's a 2 hour drive from where i live) but WORTH it! I rarely have seizures EVER now. I take 300 mg of lamictal and 75 mg of topomax per day.

However :) the many different medications and side effects and just overall effect of living life this way have really taken it's toll. Absolutely no one i know or have ever had a chance to speak to knows just what i mean when i try to talk about it-so i don't.  Everyone in my family is so healthy that it makes me sick :) 

I'm getting married in the fall. He's my best friend :) and he's the one person that i want to tell everything to-that some days it's hard to get out bed-because i don't if it's going to be a "good" day or a "bad" day. But i just can't force the words out becuase he won't understand.

I know this blog is about topomax :)  Sorry guys.  I guess i just need to hear someone say I know exactly how you feel and you're not alone.

Re: Topamax Side Effects

late reply...but yes i know exactly how it is when you have epilepsy andy know exactly how you feel when you meet the one..sooo happy for you!!! how is topamax treating you??? today was my first day on it

Re: Topamax Side Effects

my son who is 7 takes topomax and does him really good, he has the lennox gastaut syndrom( very severe form of epilepsy). he was one keppra but taken off because of his aggrression and moodiness. he now takes topomax 25mg am 25mg pm, lamictal 50mg am and 50mg pm, seems to really work.

Re: Topamax Side Effects

Mylee,

 Watch the Topamax...it does have a side effect that messes with memory.  My son started having seisures when he was 5 and he is 16 now...he started topamax at the low dosage and was fine but the doctor started raising it and he started having trouble in school with retaining the information that he needed for tests and stuff.

We just switches doctors recently and she wants him off the topamax because of this reason.  My son was a straight A student and yes he is a normal teenager with not doing his work but he went from A's to D's.  I know some is teenager but I *TRUELY* believe that topamax is part to blame also.

Re: Topamax Side Effects

Mary, yes, it is the topamax. I was a babbling idiot at 75 mg twice a day and since it made my complex partial seizures WORSE at night, and occur more frequently, I am coming off of it. Trying to do it slowly but I want off off off now! I was only on it for a few weeks.

Re: Topamax Side Effects

I was first put on Tomamax, and the first month I was ok. Second month I did nothing but sleep, and I was unable to think critically (which was not ok when I was doing my senior assessment project in college!) So I went off the topamax right away. I lost about 8 pounds in just a few weeks. I have a friend who takes a low dose for headache control, and even with just a little she doesn't feel like eating much. The thing to remember is your body still needs caleries!

I am on Tegretol now, and I have no side effects, and it works great. I figure if I need to loose weight, I can try to go back to topamax, now that I'm out of college and I don't need to think to do my job.

Re: Topamax Side Effects

Black,

The doctor just recently put me on Topamax and he could not stress enough the importance of drinking a ton of water throughout the day. This drug can cause kidney stones and it sounds like that's the pain you're having. I've had a kidney stone in the past and it's horrible-- radiating pain in your sides and extreme pain in your back and belly. Believe it or not it feels like the beginning of labor.  I think drinking lots of water would diminish the risk of kidney stones and constipation. Worth a try. Good Luck.

Gloria

Re: Topamax Side Effects

My doc didn't give me any warning about anything. I hated Topamax, it was awful. I wish I knew I was suppsed to drink lots of water!!I too lost a ton of weight.

All the best, Christine

Re: Topamax Side Effects

My daughter has absence seizures and was prescribed Topamax.  That was two months ago. I'm weaning her off of it because she would do things and not even realize she was doing them, like moving things around in the house or going into a room and not remembering being there. Here concentration is shot, she lost memories for the last few years of her life, like holidays and people. 

She just got glasses right after she started on the medication and the medicine has affected her eyesight in this short amount of time to the point that she needs new glasses already and the color yellow is fading on her, as well as other colors. The medicine is causing her to lose her eyesight, to what extent and if it's repairable I don't know.  My daughter is 13 years old.

She also became very agressive, defensive, and downright hateful. She went from an intelligent, very quick witted and big hearted girl to a very slow, confused, and aggressive girl.  

I love my daughter with all my heart, and I'm considering after all the problems that she's gone through to just deal with the absence seizures instead of trying to find a medication for it. The medicines are hurting her wose than the seizures are, and doing permenant damage to her body.

Does anyone know of any natural remedies or anything that's not a drug that will help her with these seizures?  If so, please contact me at twistid4u2@yahoo.com.

Thanks so much. 

Debi

Re: Topamax Side Effects

I bombed out completely on Topamax and changed Dr. My new Dr. calls it dopamax. I am now on a the modified Atkins Diet and doing much, much better. More people should look to diet for siezure control, it is amazing.

Re: Topamax Side Effects

I am 17 years old and have been on Topomax for about a year and a half.  I have not seizured since starting Topomax and I told really have any side effects.  I had 2 seizures three years ago and was put on Dialaton, which I had an allergic reaction to and then I was changed to Tygretol, which made me gain 40 pounds.  I was finally changed to Topomax and lost about 45 pounds and my weight is now consistent.  Of the medications I have been on, Topomax helps me concentrate most of the time and most importantly, not seizure.  Stay strong!!

Re: Topamax Side Effects

Hi. my mom is on 1000mg of Keppra twice a day, and 100mg of Topamax twice daily also.  It's been almost 4 months since she started that combo and it has lessened her seizures but her memory is also lessening...  She has just recently been complaining of side/abdominal pain and well sorry for too much info but she thought she started menopause since June but all of a sudden along with the pain, she's bleeding.  I'm worried that her kidneys are failing.  Her doctor never had her liver or kidneys tested in the whole 2 yrs she's been sick either.  I'm positive it has nothing to do with the Keppra but I fully blame the Topamax, she's lost almost 15lbs!  She's this frail little thing now, not like she was huge to begin with either...She has to force herself to eat because she has no appetite anymore.  It says that weight loss can be expected but depending on how much and how rapid you lose it, it could be serious.  But I don't think the side pains are "normal" side effects.  If we get any info I'll let you know!  Good luck, stay strong:)   

Re: Topamax Side Effects

Hi, when they diagnosed me with having seizures a year and a half ago the first medication I was put on was Topamax (aka Toparamate) and I got my list of side effect from the doctor when I started it but they can never tell you what it feels like to actually be on these meds. I've skimmed over most peoples responses and almost everyone is saying the same thing.

- abdominal pain, weight loss, trouble trying to remember words, the med wearing off after a month or so, fatigue, changing doses before finding the amount that works or being taken off completely, bowel irritation, loss of appetite, trouble concentrating and so on...

I feel comforted knowing that how I'm feeling and my side effects are almost text book to the other users of this med. Thanks for everyones stories, it makes going through having seizures much easier, I know I'm not the only person in the world going through this.

Re: Topamax Side Effects

my tompax  makes my hands and feet go numb and my stomach hurt and me not hungry but my dr said theses are normasl side affects and also the loss of memery i have to

Re: Topamax Side Effects

Hi There!
Well i have a happier story to tell :)
I am sixteen, and my brother and i are twins, and we both have epilepsy.
He had his first seizure when he was seven or eight, and i had mine when i was nine.
After our first seizures, we were put on Epilim. (Sodium Valproate) the only negative side effect was that it made us gain kilo after kilo of weight that no amount of exercise and dieting could burn off. Just after my fifteenth birthday that i went to see my neurologist for a regular checkup and he told me that Epilim caused birth defects and problems with mental development in pregnancy, so if i wanted children, i would need to change medication. He suggested Topamax. That was a year ago. I have just celebrated my 16th birthday, and i have lost almost 14 kilograms, thanks to excersise, and some well deserved side effects. I found that the only negative side effects were the tingling, which went away after about a month. topomax has been wonderful for me. :)

Re: Topamax Side Effects

hello
I realize this is an old post but I just joined so...
umm well i took over 6 different medications which ended up burning my skin (yea literally) - allergies :/
and the other just didn't work. It's only been about 2 years going on three and I've had major problem with medication. Regarding Topamax, I am still supposed to be taking it but my side-effects drove me crazy. I was literally starving and lost almost 20lbs in less than a 4 month. I had been taking it for about 6mths and was already normal weight. I take 3,000mg of keppra (day and night 1500mg)
and was taking just 250mg (125mg day and night).
Side effects were all active and eventually i got tired. I'm still not sure if they have stopped even now, I haven't been able to contact my doctor yet, (i'm sure he'll have a fit) and my kidneys are acting out. Topamax is used for headaches as well so it does explain why my migraines come back (but not at all as painful as they were).
I'm 15 yrs old now and i winged MYSELF off of topamax. My mother consulted a friend and asked for help and she had said that if I thought it was best then i may be right.

The fact is I felt horrible with it and feel bad with-ought it. It's truly is lose lose situation. Unfortunately my doctor never really told me about side effects, only that they were there and that it was a 1% chance kinda deal.Though I am the apart of the 2% of the worlds percentage who both cannot undergo the surgery because there isn't enough there yet it's enough to cause damage,plus I have no alternatives after this. I've been on and off of keppra but I don't feel a change. I haven't had a seizure SINCE I was on topamax and I am almost convinced it's gone, because this is the lower amount of keppra I have taken. (Keppra was no good on it's own yet too good to put away)

My only fear is that It will all come back in a bang!

Sorry, to go on like that. It's been awhile since I've actually spoken about it

Re: Topamax and Blindness

Hi everyone, my name is veronika, I'm 21 years old and live in canada. I have had epilepsy since i was 6 months old and all my live i have been taking carbomazepine( tagretol) , but today i took my first and additional 25mg dose of topamax... I am very nervous especially after i read that it can cause blindness... It actually simply freaks me out as it is the one side effect that is just irreversible and "wow" to me...Has anyone heard more about it? or maybe you know someone who was unfortunate to face it?? Please help and will appreciate any given feedback!!

Re: Topamax Side Effects

Topamax was my worst AED.  It not only caused an itchy rash all over my body, which led to bleeding and scarring, I also ended up with eczema.  The worst were the mental side effects: hallucinations, and stopped all communication with everyone....as if I had a stroke!  In fact, my boyfriend took me to the E.R. for a CT scan.  I had to be weaned off it.  My boyfriend, and another close friend, stayed with me 24/7 until I 'came back to earth.'  I wasn't able to take my AEDs correctly, tell what day it was, bathe or dress myself.  This stuff is already documented for serious mental side effects.  Watch carefully...

Re: Topamax Side Effects

I'm on 500 mg Keppra, 50 mg of Topiramate/Topamax (total of 7 pills a day). Tired , slight memory loss and yes weight loss. Took 4 seizures in a matter of 5 months 2 in one day and 2 car accidents (1 car totaled) before I was diagnosed with epilepsy. This site is the best. SO glad I found it....I have no recollection of any of my seizures. I can only go by reading the narrative on the police report of a witness who saw me in my car clutching my chest as if I was having a heart attack. I was on a different med before being put on Topamax but had wicked allergic reaction...I'll deal with being tired...people are jealous of the weight loss:)  

Re: Topamax Side Effects

My son had a lot of difficulty on Topomax, difficulty finding words, stomache aches, neuropathy, loss of appetite although great for those who want to loose weight not so great for teenagers. Also seemed to have more fatigue. He was then placed on lamotrigine and has been seizure free for a long time, and the side affects, are negligible and hard to assess if they are even medication related. If you are a student you might find the impact on word retrieval with topomax pretty annoying: students have told me they ironically call the med. "dopomax" As parents of a child with epilepsy we have discovered that it takes time to find the meds with the least side affects and best seizure control. My suggestion is don't be satisfied and work with a neurologist---ER staff may not be as well trained in epilepsy and you want a specialist with a lot of clinical practice and who knows first hand the range of symptoms and efficacy of various medication regimes. Keppra can work like a champ or else have some unpleasant side affects, not at all helpful for our son with left temporal, frontal, partial complex epilepsy. Others anecdoctally have reported to me it works well for them. Our impression is if you don't have good seizure control, and or have difficult side affects, don't be afraid to pursue alternatives with a neurologist. Figuring out the best meds in our view has been a combination of expertise and the art of a good practitioner. Don't be satisfied with difficult symptoms. Good luck and best to you. The epilepsy foundation in your area can also help with referrals. Get hooked up with a good neurologist!

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