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Global Patient Feedback for Topamax (Topiramate) ( Post a comment )
Question/Comment:
Everyone talks of the common tingling in the fingers, legs, arms, etc... I have been taking Topamax 100mg x 2 per day, now for 5-1/2 years or so, for "one" migraine that never goes away on the scale from 1-10. I have had all the tingling, which in my case got very painful as my migraine went up closer to a 10 (or "10+ and out-of-my-mind migraine) and lighter tingling as the migraine became lower to an average daily 5 to 6. In fact, the migraine, once it got to the average day of five, I had tingling all day long whatever the number from 5-10, it just became more intense as it moved up in the number scale.
Because of the unusual way the tingling pain was happening and the length of time it was going on (1 months or so), my Neurologist, looked into Neurologically why, and found the tingling side effect of Topamax was depleting Vitamin A from my neurons in my body causing the painful tingling. She recommended 50mgs of Vitamin A, twice a day, until the tingling period stopped. Within two days, the tingling became less painful and in a week, it was gone, and I have not had the tingling since. She stated that the side effect usually does go away anyway, that I could wean off the Vitamin A. This was about 4 weeks after starting the Vitamin. Therefore, it really is possible not to have any of the tingling at all.
Memory loss, yeah, I have acquired that side effect also. I notice it more, when watching a movie that my husband says I have seen it with him and I know I have not. That has happened many times, but that is not the end of the world! The big things are when (or the big question IS when…) I get off disability, how am I going to be a productive member in society with memory loss, stress and working a full time job? Alternatively, if I chose to go to school-Am I going to remember what I have learned? I have asked myself those questions often! My answer is, work at home! I've resigned myself to the fact that I'm always going to have migraines and a company, whomever they are, are going to see memory losses in my work, and also are NOT going to let me lay down in these competitive times, all the time, if a migraine pops up, I'd be fired in a quick hot minute. That is what happened eventually, in my last ten-year job before I went on short term, then long term, and then on Social Security for my migraine that will not give up. School? What kind of grades could I accomplish and then comprehend in a job to do it productively?
So my solution...working at home will solve my dilemma. I go lay down on my time, when a migraines gets out of hand in between my working in a business (off disability of course). As far as the memory loss, making sure things are organized and backed up, bookwork, appointment books, and memos are precise, and the business will work great. Organization keeps you on track when you are experiencing memory loss and therefore, no room for error. Having my husband for back up is good too. School, take one class at a time. If handled okay, then take two at a time, then three and so on…
Oh, and just to mention loss of weight, I too had a weight loss of 87 lbs. On a 5' 0" frame that made me obese at 198 lbs. In addition, after 5 + years, going on 6 years in September, I have kept the weight off. Topamax does curb your appetite. I have always been more on the side of not liking sweets like donnuts, cakes, breads and things like that, but Ice cream was my weakness. I really liked the good things, lots of salads, grilled chicken, fruit, whole wheat bread and only olive oil & vinegar, but I ate too much of it. I was healthy, but healthy fat if there was such a thing.
Anyway, Topamax does help some people. To tell you the truth, I really don't want to go off Topamax, not if I have to go back to what I was like 5-1/2 + yrs ago. I laid in bed, with a crazy-over-the-top, 10+ migraine, screaming my lungs off for someone to help me die because of the pain I was having then day after day, drug after drug given to try to take down the migraine. Believe me, I don't remember that period of time and thank goodness (My Lord is good), but after about two months and 50 pounds of weight loss, I was put in the hospital for 5 days while they attempted to lower the migraine with a drug they used for drug addicts. It was liquid fire, which they raised in dosage xtwo each day, to try to knock out the migraine. I was tied down to avoid movement when given the fire medication. It hurt so badly, I felt like I was being tortured. By the end of the 5th day, the migraine was still was still high. They told my husband to take me home; there was nothing they could do for me. I only remember the first two days of the hospital stay.
48 year old Female
Posted: 2009-06-24 16:53:41
Answer/Reply:
I too had a large weight loss. (40lbs) I went from 140 to 100 in a matter of 3 monthes. I was taking 25mg to start, but anyone with migrains knows that was not enough. So my doc uped it to 50 then 100 then 150. I started feeling better then, but boy was the weight coming off and the memory loss, oh yea. My family would get tired of me telling the same stories over and over cause I never remembered I already told them. They finally asked what was wrong with me and my sister looked up Topamax. (they call it dopamax) She said it was a very bad drug that could lead to much worse things. I stayed on it for 4 years and finally said enough was enough. My weight is coming back(120lbs) My headaches are better. I get maybe 2 a month, which is great compaired to 2 a week. My doc also put me on elavil(an anti-depressent) to help me. I have to say I'm off all meds and feel great. I wish all the weight wasn't here, but my memory is back.
38 year old Female
Posted: 2009-06-30 12:41:15
Question/Comment:
I have been on Topamax for 2 1/2 years. It was the first med that controled and reduced my migraines in 50 years. But over time the side effects of first mild to severe memory loss, confusion, first mild then severe cognitive impairment and dizziness. Mood swings and now I need to be on a short term disability until my brain is back under my control. My doctor is slowing lowering the dosage but the migraines are coming back with such force. I am now in a memory clinic for testing after Topamax is out of my system. One doctor has said there should be no lasting effects from this drugs. But I have read that this is not the case for everyone and another doctor said I might have some lastly memory loss? My dosage only got to 150 mg daily. Maybe I am more sensative than others to this drug. I am wondering if some memory loss could be expected?
63 year old Female
Posted: 2009-06-08 11:04:13
iGuard.org Answer/Reply:
In the manufacturer information for Topamax, it is noted that there are some adverse effects that occur during therapy discontinuation. The adverse effects associated with discontinuing therapy include depression, insomnia, difficulty with memory, sleepiness, abnormal prickling sensations, movement disorder, dizziness, and nausea. The manufacturer information does not describe how long it took for these effects to improve. As with most side effects, patients will vary in their recovery.
Posted: 2009-06-11 21:54:01
Question/Comment:
I didn't realize it but my hair has been falling out in clumps . I had no idea what was causing it . So thank you everyone for writing in to this site . I switched to the generic and that's when my hair started falling out. I take these for migraines , but I will be getting off of them as soon as possible . Once again thank you!
45 year old Female
Posted: 2009-06-03 15:12:45
Answer/Reply:
Like many others I was on the brand name Topamax and then was switched to the generic. It sure messed me up. It caused me seizures that I had not had in over 15 yrs. For those that have side effects, please do the following as I did. Go online to www.fda.gov/medwatch . You can hit contact and someone will help you with filling a complaint that you have on any prescription or no presc. drug that you are having. This is the only way that they have knowledge that the new toprimiate is causing side effects that it should not be. Please, seizures can kill. Toprimiate is not the same as the brand name as Topamax. It would be nice if it was because it would less expensive, but it is also deadly. Do your part also and spread the message.
55 year old Female
Posted: 2009-06-05 15:14:29
Answer/Reply:
I also had problems when the generic came out and the pharmacy gave me that instead of the brand Topamax. I could hardly keep it down and I never had a problem with the name brand. I totally agree with you, it is not the same formulation as the original. The tingling side effects were 10x more severe and I had a low grade constant headache at the base of my neck for the entire month I took it. I will only accept the brand name now.
56 year old Female
Posted: 2009-06-26 12:09:00
Question/Comment:
I started taking Topamax 3 months ago for anxiety issues caused by a medication I was taking at the time.
I take 25mg in the morning and 25mg in the pm. When the Dr tried to increase me to 50/50 I started feeling severely hot. I told the Dr, but I don't she believed me. Anyway, I went back to 25/25 and the hot feeling went away... That is, until the pharmacy switched me to the generic version. Now I'm feeling severely hot again. I'm also starting to retain fluid, but do not know if that is related to the Topamax or not.
I'm just wondering if I should just wean off it since I'm no longer taking the medication that was causing the anxiety. I hate taking any drug that I don't really need... Especially one that is causing me issues.
40 year old Female
Posted: 2009-05-24 22:37:27
Question/Comment:
I was switched to the generic Topamax 300mg also, and it gave me the worst stomach pain, vomiting, plus more migraines than ever. It is not the same as the name brand. Make sure you report your side effects to the FDA Medwatch. The link to the site follows:
http://www.fda.gov/medwatch/getforms.htm
49 year old Female
Posted: 2009-05-22 19:25:22
Question/Comment:
Hi, there are alot of pages of comments on this drug, and I really couldn't read them all, so please forgive me if I'm repeating anything. I'm taking 200mg of generic topamax a day for bipolar and migraines as well as staving off non-epilectic seizures caused by conversion disorder. I've never had an issue with tingling in my extremities, and sad to say, i haven't noticed any weight loss, but I have experienced the awful memory loss, though I can't tell if it is the drug, or my conversion disorder of "spacing out" doing it's thing. Anyways, I was wondering if anyone here had any experience of their birth control going wacky while taking this drug? I noticed on the chart that this was an implied issue, and I personally haven't had my cycle in over 3 months and none of my doctors can figure out why (not pregnant, but would like to be in the future). Thanks in advance.
25 year old Female
Posted: 2009-05-13 16:03:36
Answer/Reply:
I have found as well as you the memory loss issue, i have been on the topamx name bran for over 6 years now. I take it for migrains and bipolar as well. I also take virmapamil it helps with the migrains. I take lyrica for my FIBROMYALGIA so i dont notice the tingling due to it. But I have heard people saying that. As far as the memory loss i have it bad.
35 year old Female
Posted: 2009-05-15 15:51:07
Answer/Reply:
The Topamax memory problems are well documented. I felt like Alzheimers was creeping up on me. So I had my doses lowered and that seemed to help with the memory problems.
Here is a short list of some of the problems it can cause:
Psychomotor slowing, paresthesias, impaired memory, language problems, speech disturbance concentration difficulty, confusion, depression, anxiety, tremor.....
I was on Verapamil with Serouel also. But had to stop the Verapamil because of the problems I was having with my heart from it. Seroquel & Verapamil together can increase the Seroquel levels in your blood, risk of QT prolongation, cardiac arrhythmias....
49 year old Female
Posted: 2009-05-23 04:23:04
iGuard.org Answer/Reply:
There are documented interactions with topiramate (Topamax) and birth control pills. Topamax can decrease the effectiveness of certain birth control medications. When taking both drugs together it is highly recommended to use additional birth control methods in addition to birth control pills. If you are experiencing symptoms like irregular bleeding, you should consult your physician or gynecologist immediately. You may also want to ask your doctor about which method of birth control is most appropriate for you - there are other options available that do not interaction with Topamax.
Posted: 2009-05-15 22:03:10
Answer/Reply:
I have been taking 200 mg of Tomamax 2x a day for 3 years. I lost 15 pounds in the first month, dealt with the tingling extremities for a year and a half, it has for the most part went away. I take it for nuropathy in my thigh and foot. It has helped the pain a great deal, but not completely. Recently the pain has been a lot worse. The memory loss has been horrible, and frustrating. It took me a while to figure out what drug was causing it. I was thinking about asking the Dr. to switch me from Topamax to another drug, but it seems like anything else will cause the same or worse side effects.
Has anyone stopped taking Topamax and had a full recovery of their memory, with no lasting effects?
40 year old Female
Posted: 2009-05-20 12:13:01
Answer/Reply:
Be certain you are taking extra folic acid with Topamax...
I am working my way off of Topamax right now, after 3+ years or so of use at a very low dose. I was so pleased that it took away the migraines, but I am now at a stage where I am still so unpredictable with my mood and I'm sick and tired of being considered "sick and tired" and I want out of this big money making loop!!
My memory has been great, still get those "uh, where was I" moments in conversation, but those are really coming from whether I was interested in the conversation or not...we have busy minds, you know... As with any med change/adjustment, talk up front with your Doc, and don't take orders that you have to do this or that, you are the illness only if you consent to the diagnosis! God bless and many Angel Miracles to you!
41 year old Female
Posted: 2009-05-20 16:17:27
Answer/Reply:
My mom has alzheimers and I thought I was starting to get it here I am reading these comments and finding out that everyone else has the same symptoms as I do. I want to say thank you in one hand and in the other I want to say help me find some way to get off these type of drugs. I have major migraines and take relpax, topamax, metoprol and prozac just so I don't take my head off ( just kidding). I will now be going to my doctor and changing up some things, there is no reaon to feel like this all of the time.Life is to short and good. THANK YOU ALL OF YOU FOR YOUR COMMENTS!!
48 year old Female
Posted: 2009-05-20 19:34:27
Answer/Reply:
I am now up to a total of 300mgs a day. I have been on Topamax for years, started at 200mgs a day for migraines. I have never been off Topamax but when my money was low, I would start taking fewer pills a day until I ran out and sometimes I would have to go without for a while. I never noticed my memory getting any better. Maybe I just don't remember lol. Thank God for the generic.
39 year old female
40 year old Female
Posted: 2009-05-25 02:43:37
Answer/Reply:
I have been on topomax for 5 years now I take 100 mg 2x a day I myself have had the tingling in my feet and have noticed that it has affected my memory. I have told my doctor about it and
he does not seem that concerned. the only good thing I can say about topomax is that I have lost 86 lbs since I have been on it. My doctor has tried many diffrent medications for my bipolar and so far the topmax along with my lamactil is the only medications that are keeping my moods stable
45 year old female
45 year old Female
Posted: 2009-06-09 12:52:02
Answer/Reply:
I was on Topamax for 6 months for migraines, it got to the point I could not make any decisions for myself and couldn't recall a conversation that was going on in front of me. My Dr weaned me off of at my request because of some personal events that caused me much heart ache. The withdrawal from this medicine is like having your brain blow up inside your head, it lasted 4 very long days and nights. Since I've been off it my mind has been clearer than it has been in years but the Dr also told me it maybe because I got off of it so soon. I feel for anyone that takes this med on a long term basis knowning full well Drs have NO IDEA what the long term effect can be. I'll find other ways to get rid of these migraine, which by the way I had at least 18 days of each month. Since I've been off Topamax I've had one in 30 days. I'm keeping my fingers crossed that hopefully it did something positive in my brain and didn't damage other parts of my body in the process. I for one did not have enough information before taking this med and the medication came with no side effect info either. I had to do research on the internet to discover what was going on inside my mind and body while on this stuff before my mind almost left me for good. It was enough to scare my husband and family half to death! So far no lasting effects but as I said, My Dr couldn't be sure whereas they don't know enough themselves about this medication.
56 year old Female
Posted: 2009-05-26 19:08:33
Answer/Reply:
Hello. I am a 39 yr old female that has been "diagnosed" with MCTD. I recently went to my ObGyn and our method of birth control is basically luck. I have an 18, 14 and 3 yr old. My health has deteriorated since the birth of my daughter, but in hindsight I do believe I could have been "sick" my entire life. I had my first seizure when I was 17. I am on Topamax, 200 mg daily, and Phenobarbital, 96 mg daily, for anticonvulsant. My recent visit to my ob .. I was told that having a MCTD it was very good that I was NOT on birth control pills because that would be bad for my system. I am down to 107 lbs. and I am 5 ft 7 in. I have a Rheumatologist, but I honestly do not think I have been properly diagnosed. I cannot keep any weight on, I am horribly tired. But I took birth control pills when I was around 16 but I did not get a period for about 6 months. I have never taken the pill since.
40 year old Female
Posted: 2009-05-31 21:18:47
Answer/Reply:
hi I take 150mg, some tingling in the beginning and every now and then, yes memory issues. No problems with cycle really, alittle more or less at times, once missed. Thats it. 45 year old female.
45 year old Female
Posted: 2009-06-03 14:42:35
Answer/Reply:
My doctor would not put me on this drug because he stated it would "cancel out" my birth control pills. I take norgestimate and ethinyl estradiol. This may be why you are experiencing the issues you are having with your cycle. Hope that helps!!
30 year old Female
Posted: 2009-06-12 21:32:27
Answer/Reply:
Yes, it does seem to cause a lot of tingling in the extremities and also, it can interfere with birth control. As far as I know it mainly makes it ineffective. I am unaware of it having the effect of making it more effective.
22 year old Female
Posted: 2009-06-19 03:13:15
Question/Comment:
I have been on Topamax 200mg twice a day for bi polar for about three years. I've always had a problem with hair loss off and on through out the year. I just thought it was from my eating habits and stress. I was reading a forum of other people on Topamax that said they had terrible side effects of hand fulls of hair falling out and to not take it. I haven't heard or had my doctor say that any of my hair loss was due to the Topamax. Has anyone else experienced this or heard of this problem? I'd also like to switch to the generic. I wasn't awear until today that it was available. Has anyone had any problems with the generic? Is this still the same?
42 year old Female
Posted: 2009-05-07 13:05:30
Answer/Reply:
I was overjoyed when I found out that Topamax went generic because my copay went down from $70.00 to $8.00. I am on it for Bipolar II and Fibromyalgia. Unfortunately, my moods became unstable, and all the pain came back. After a month of dealing with this, I am back on "brand necessary" Topamax, prescribed by my doctor.
Both my family doc and my psychiatrist said the generic versions of anti-psychotics, blood pressure meds, heart medications, and other drugs are not equivalents and have screwed up a lot of people. And those people end up going back to "brand necessary" anyway.
So buyer beware. Hopefully the generic topiramate will work for some people, but for those who suffer from seizures, I'd stay on brand-necessary Topamax rather than take the chance of more seizures. I have a friend who had to go on Keppra, and they told him that under no circumstances should he take the generic version. I think this is in the same realm.
Good luck!
33 year old Female
Posted: 2009-05-08 17:57:23
Answer/Reply:
Just want to add....generic brands can deviate from brand name.... within a certain percentage of the FDA allowable specified ingredients, and thus certain individuals may experience breakthrough seizures, or side effects to "generic topamax." Whereas the brand stays constant...different manufacturers, supply the generic forms.
What works for one person may not work for another.....just like side effects. One person may have several, and another may have minimal effects.
I have noted weight loss from taking the Topamax 200 mg daily, and 40 mg of Prozac (generic) daily, but likely from the combination of the 2 meds. But this has been fine with me!!! I sometimes lose my train of thought, become confused or disoriented (momentarily), can't find the right word, etc. Have not lost my hair, but have some tingling in fingers on ocassion. I can live with all of this, as the benefits far outweigh the risks, for me, in my life.
54yo female
55 year old Female
Posted: 2009-06-06 17:05:39
Answer/Reply:
I am back on Topamax again for bi-polar disorder and have been doing well on it. I had tried it a couple of years ago and had major problems with confusion and memory. It got so bad that I was driving and had trouble figuring out how to get where I was supposed to be going. I had stopped at a convenience store at an intersection and when I left the store I couldn't figure out which way I needed to go on the road I had been traveling on and turned around about three times before finally determining I was going the right way. I was really scared. I was trying to get to my phychiatrist's office. I told her I thought it was the Topamax and immediately got weaned off of it and on something else and was much better as it got out of my system.
Later I wondered if it was really the Topamax or if it was maybe a combination of a couple of meds that I was taking at the time. I asked my doctor about trying the Topamax again, due to the side effect of weight loss, and after some discussion, she agreed to put me back on the Topamax. I had strict orders to call her ASAP if I notice any signs of an increase in my confusion or memory problems like I did the last time. She also told me to be sure that I take my B-100 complex vitamins with it. She told me that anti-seizure meds rob your body of B vitamins, which make the side effects of confusion and memory problems more likely. This time, I am faithfully taking the B vitamins, which I know I didn't do the first time. I have been back on the meds for several months so far and have not had that problem.
To me the benefits, besides the mood control, is the effect it has on my appetite. I feel less hungry and also don't feel the desire to snack like I did in the past. It also seems to increase my craving for healthy foods and make junk food less desirable. I don't know if it has that effect on anyone else, but that's why I wanted to try it again. After several years of being on steriods for asthma and arthritis, and due to out of control eating from my depression, my weight had reached 313 lbs. I finally got my rheumatologist to let me get off of the steroids last year. In the past 6 months, since I've been back on the Topamax, I've lost 50 pounds! I've still got a long way to go, but before I couldn't seem to lose even 5 pounds. So, now, even if I soon have to get off of it, I have had a huge jump start and now have much more energy and self confidence that I can lose it on my own if needed!
But ... I have also been noticing a huge amoung of hair loss. I have had it in the past this severe when I was taking another med which had hair loss as a side effect but have been off of it for over a year and the hair loss has just increased over the past couple of months. I think I'll try switching back to the brand name because it has only been this severe on the generic. Thanks for the tip.
47 year old Female
Posted: 2009-06-15 03:47:45
iGuard.org Answer/Reply:
No iGuard members report hair loss while taking Topamax. Hair loss, or alopecia, is not listed as a side effect of the Topamax. Please make an appointment with your doctor to discuss this symptom and its severity. Generic medications are approved by the FDA and must show that they contain the same amount of active ingredients as the brand name medication - so the brand and generic versions of Topamax should work the same and cause similar side effects.
Posted: 2009-06-20 22:03:44
Answer/Reply:
i switched and im ok the generic is great cheaper too
28 year old Female
Posted: 2009-05-19 19:08:25
Answer/Reply:
I have been on 350mg of Topamax for over 6 years for seizures. It has been very effective for me. I do experience some memory loss as well as some tingling in extremities. My pharmacy, for the first time in the 6 years gave me the generic last month, without asking me or contacting my neurologist, and within a week, I was experiencing breakthrough seizures. I would not recommend the generic, but that is just my personal experience. The problem with generic drugs is that you may get one this month from one supplier and next month from another. The lack of consistency, especially when dealing with seizures or migraines, etc. is a significant problem.
55 year old Male
Posted: 2009-05-20 11:42:38
Answer/Reply:
Hi, I was on Topamax for about 12 months and I had to stop it because of the side effects!! I for one lost over 20lbs, had the problem with the feet, toes and head tingling and the worst of all is my thick beutiful hair has gotten very thin!!!!!!!! Hand fulls of hair has came out. Now I have been off of the Topamax I have gained 40 lbs.. my hair has stopped fallen out but it has not grown at all where it fell out at... From my experience with Topamax was one of the worst of all, I can not get back my hair and I am glad that other persons has had good experience with this durg. I will not take it again . Not to mention on how it made me feel with forgetfulness and mixed up on my statements when I would talk to family and friends... I have Bi-polar and my doctor gave me this stuff and I wished and prayed that I would have not even taken it.One other point was the weight issue.. Beware each of you who is taking it for weight control. If you go off of it you will gain it back plus MORE!!!!!!!!!!!
52 year old Female
Posted: 2009-05-23 17:59:12
Answer/Reply:
My daughter has been on Topamax (100mg twice a day) for several years now and she has suffered hair loss for approx. the past 2 years. She also has not been having her menstral cycles. We are unsure of what is causing the lack of her menstral cycles because she is also on risperdal which has caused an increased prolactin level and has in the past causes abnormal cycles. We are in the process of reviewing her medications and hopefully making a change. I am not happy with all the side effects we have seen over the years and continue to see.
36 year old Female
Posted: 2009-06-02 21:58:08
Question/Comment:
I am the same person who has Lupus and major depression I just read the comment from the person who said not to take anti-depressants while on seizure medications. If I didn't take
Topamax and my anti-depressants I probably wouldn't be here today. I have had no side effects
from anything they have given, and I take 9 medications including duragesic 75 mg and percocet
100/325 360/30 days. Seroquel 450mg to sleep, I repeat, no side effects. It depends ON THE PERSON COMPLETELY. DO THE RESEARCH YOURSELF, IT'S DIFFERENT FOR EVERYONE, I'M RESISTENT TO MEDICATION. SOME PEOPLE ARE!!
58 year old Female
Posted: 2009-05-06 18:26:33
Answer/Reply:
I too am on anti-depressants along with the topamax (taken for migraines). I don't know where I would be with out taking both. I have gone from daily migraines to having them pretty much with my cycle, which is liveable most months. I am monitored closely by my doctor (currently every three months) so that is always something to be aware of.
42 year old Female
Posted: 2009-05-21 23:45:45
Answer/Reply:
yes, I am also in the same boat. I take Topamax for migraines and seizures- but I have Fibromyalgia and Lupus. I went from almost daily migraines before topamax to a few a month now. I am also on anti depressants which for some reason allow me to move- my brain can't communicate with my nerves and muscles without this type of medication and I am unable to move. I do have some side effects, but the good definately outweighs the bad. I am on a bunch of other meds too- somtimes it is hard to tell what is causing what- SO I AGREE, PLEASE LET'S TRY TO GIVE OUR STORIES FOR INFORMATION, NOT AS IF WE ARE SURE THAT THE SAME THING WILL HAPPEN TO EVERYONE. THANKS.
37 year old Female
Posted: 2009-05-28 14:14:18
Question/Comment:
I take 200mg of Topamax twice a day for panic attacks I guess. I have SLE lupus and major depression, the doctors put me on Zyprexa for a year but they did not tell me you would gain
over 40 pounds with this medication (I usually weigh 130 at 5' 8") and got up to 170, then the
doctor took me off of the med. I never felt better in my whole life then when I was on that Zyprexa.
But I hated the weight gain. The reason he had me take Topamax was the weight control.
He said without it I would gain tremendously more. I said put me on something else. He did, but he kept me on the Topamax because of panic attacks. I have been on Topamax now for at least
5 years and I have noticed that my right hand will jerk every once in a while I just noticed it,
after reading all these comments I'm wondering if it isn't related. You have to remember I have
Lupus so I am on at least 9 different meds and I mean heavy duty meds like narcotics. But I
always have new doctors ask why I am on Topamax and I have to tell them it's because of panic attacks, I'm not sure this is what they want to hear, am I right or not??
58 year old Female
Posted: 2009-05-06 18:13:54
Answer/Reply:
I've not heard of Topomax being used for panic attacks. I take Topomax for migraines. I took Effexor XR for a long time to control my obsessive thinking and panic attacks (along with counseling). I am just now starting to phrase off the Effexor with my doctor's guidance in the hope of being able to stop it altogether. It worked wonders for me. It allowed me to get back "out into the world" and do things I used to enjoy. I've developed new habits, new ways of thinking and behaving. So far I haven't noticed any of the old symptoms coming back as a get off the medicine.
57 year old Female
Posted: 2009-05-29 23:35:17
Answer/Reply:
Topomax is also used as a mood stabelizer and a anti anxiety medication. It has helped me so much with my mood swings. I don't know what I would do without it. One minute I would be so irritable, mean, violent and nasty. the next minute I would be majorly depressed if I was not on topomax.
22 year old Male
Posted: 2009-06-02 15:53:04
Answer/Reply:
Hi, I took it for a year and a half for migraines[also have depression] I feal it is one of the worst meds anyone can take, even wondered if I was being his guinea pig. Some have claimed weight lose-I had gain, tingling in the fingers that got all the way up my arms and in my face, although it helped with migraines I had many more headaches. There was memory lose even as you speak you'll forget what you were saying, confusion that I still have to this day just not as bad. I use to be a manager of a retail store and I feel because of the memory lose and confusion it mad my job to difficult to stay with. Lets not forget the hair lose, my hair is thin enough did'nt need to lose more. The doctor after hearing my complaints told me to just "stick with it the benifits outweigh the side effects". I felt that being more messed up was not worth having less migraines so I weined myself off and havent gone back, I feel a lot better even though the confusion never cleared up all the way. It's one med that I would strongly suggest anyone to stop taking.
45 year old Female
Posted: 2009-06-02 22:21:33
Answer/Reply:
Hi I just read ur message on here about memory loss, confusion, tingling in hands and arm and hair loss. I have all these symptoms. You don't mention what dosage you were taking, would you mind telling me.. I have been taking low dosage daily 40 mg plus lexapro for depression I didnt have any side effects from the Lexapro been on that for 2 yrs and about 9 months now with the Topomax, seems like my memory is just getting worse along with the hair loss I was on a slightly higher dose could not function on it at work so it was lowered few months back. Not sure it worth staying on for the migrains.
Melinda
47 year old Female
Posted: 2009-06-05 15:52:37
Answer/Reply:
I am also on topomax, have no wieght gain yet but I watch everything I eat. I just started feeling tingling in my hands and arms and my doctor said it was carpal tunnel, now im wondering. I take the medication for migraines.
44 year old Male
Posted: 2009-06-03 17:26:36
Answer/Reply:
I take Topamax for migraines. The memory loss took about 3 months to completely clear up. I take fish oil supplements to help just in case there is any residual memory loss, and the fish oil has actually improved my memory. My psychiatrist says that Topamax should also help stabilize my mood since I have a mild form of bipolar, for which I am on other medications as well. The tingliness I experience on occasion is reminiscent of the time when I experienced major anxiety and had to take Xanax. The tingliness was in my hands, feet, arms, legs, and face (lips, tongue, nose, and cheeks) for a week or longer; I get the same feeling sometimes but don't equate it with the medication since it was previously contributed to anxiety and went away with treatment.
33 year old Female
Posted: 2009-06-09 10:02:24
Question/Comment:
Has anyone taking the generic form of Topamax now over the regular form of Topamax found any changes when using it for seizures? I just switched to the generic form because the insurance company deemed it "better" in April to use it over the other. I have had headaches, been forgetful and tired.
My pharmacist said that I could switch and pay the $500 for the old version. Nice, huh? Now I have to have the side effects and worry that I may have a seizure while driving or at work. I just love the American Health Care System.
60 year old Female
Posted: 2009-05-04 21:23:20
Answer/Reply:
I was switched in April to the generic Topiramate (mylan version) from Topamax and had extreme fatigue and headaches, but only in the afternoons and certain other times of the day (although the headache was all of the time after about three weeks). I take it for seizure control and my doctors felt the side effects were due to me having absence seizures due to the switch to the generic and the fatigue was a post-seizure state from having so many seizures in single days. This is particularly bad since I hadn't had this type of seizure before- only partial seizures and myoclonic seizures.
My doctor wrote me a prescription for Topamax as 'medically necessary' and I just got it filled for a regular co-pay for one month, but I'm not sure if I'm going to have to fight for an override going forward (normally I'd have to pay the difference between the full drug cost and what the insurance pays for the generic). Even so- I wound up in the ER and I've likely lost my drivers license for at least six months because of this. I'd rather pay for the drug than do that again.
Your mileage may vary (you may just be tired and have headaches as a side effect) and I wish you the best. But this is what I just went through in the past week and a half.
29 year old Female
Posted: 2009-05-09 17:00:14
Answer/Reply:
I had been on Topamax for over 5 years without too much side effects that I couldnt live with. I take it for grand mal seizures. After I was moved to the generic Topamax by the insurance company I immediately knew the difference the very next day. I became sick at my stomach and had uncontollable shaking. I couldnt concentrate at my work. It was a huge headache to get the insurance company to move me back to the regular Topamax but with my doctors help they did appove the switch with a minimal copay. Try asking your doctor to help you with it and see if the insurance company will appove the usage, the generic is NOT the same!
41 year old Female
Posted: 2009-05-17 17:20:17
Answer/Reply:
My wife was given the generic and when she asked her Dr about it he immediately wrote her prescription to not substitute. Insurance companies are different but she was able to still get the name brand for the slightly higher copay ($25 vs $10 for generic).
41 year old Male
Posted: 2009-05-21 14:25:54
Answer/Reply:
Hello, I am a 58yr. old female who developed seizures after brain surgery. I now take 800mg of the generic(mylan) topamax, same dosage as the brand. But the side effects are unbearable and the cost to pay for the Dr. Brand recommended, is astronomical. My Neurologist wants to increase plus add something else for the additional seizure activity and the increase and severity of migraines. I'll know after the next series of tests. Until the switch to generic Topamax, my seizures and migraines were adequetely maintained. Now, my seizures, are so frequent, I stay at home , until the tests ,not until later this month. Working with my Dr's it will get better. Good LucK with your dilemma.
59 year old Female
Posted: 2009-06-01 23:09:48
Answer/Reply:
I am on several different meds for a seizure disorder, and a small dose of Topamax, which is Brand Name. I never tried the generic version. But I do think that some meds are better brand name. I hope that you are able to convince your insurance company of this. I do know that one of my meds, Zonegran, is not as effective in the generic form. I only tried it for a few months, but I could definitely see a difference. I just felt better with the brand one. My doctor writes my RX asking for Brand-Name ONLY. Thankfully it is still covered by my insurance. I wish you luck. Take Care.
50 year old Female
Posted: 2009-06-02 22:00:45
Answer/Reply:
Sometimes insurance companies will pay for the brand name drug if your doctor submits a prior authorization (either a form or a phone call) explaining why the generic is unacceptable.
54 year old Female
Posted: 2009-05-31 08:50:16
Answer/Reply:
Can you get your Dr.'s office to fight this for you? I had the same issue with my Nexium. My insurance didn't want to pay for it anymore and wanted me to take something else entirely different, as there is no generic for Nexium.
My Dr.'s office fought it after I took another medicine for a month and it didn't help me. If you explain to them that this other medication is giving you headaches and making your forgetful and tired, they can probably fight the insurance company for you and get them to pay for what works for you. It is worth a try!
I didn't know they made a generic form of Topamax, I'm surprised they aren't making me take that one too! Although I don't take it for seizures, I take it for my facial spasms.
Good luck!
35 year old Male
Posted: 2009-05-31 23:53:32
Question/Comment:
I am on 150 mg Topiramate per day for mood stability .Worst problem I have is dead toes &tingling feet. I have read Potassium supplement is good for symptoms of paresthesia.Anyone have any idea of suggested daily supplement amounts please.
61 year old male
62 year old Male
Posted: 2009-04-30 17:29:31
Answer/Reply:
I am 49, female, have suffered from Migraines since I was 19 and have been on Topamax for about 3 years. I sometimes have the tingling in my hands and have found that if I drink water I don't have that side effect. The more water you drink during the day the less you will get that tingling... Not sure why but it works. Hope it works for you... It is working for me.
50 year old Female
Posted: 2009-05-25 16:51:08
Question/Comment:
I am a 38 year old female on 100mg of Topamax. I had bouts with extremely severe migraines since I was 15. They came out of left field on me. I never banged my head or had any jarring experiences prior to them starting. I was placed on Fiorinol and many other meds and I continued to suffer sever pain, light, sound, touch, and movement sensitivity until 3 years ago. I tried Imitrex and every time it made me feel like a truck hit me. I suffered body aches with my migraines. Now since Topamax, it's been 1 beautiful day after another. GOODBYE MIGRAINES!! :)
39 year old Female
Posted: 2009-04-30 02:40:24
Answer/Reply:
I'm 35 female, and had the exact same prescription as you, fiorinal, and tried imitrex too...same thing....except imitrex made me feel fuzzy...and weird. now with topamax....beautiful days with no headaches!!!
36 year old Female
Posted: 2009-05-01 12:23:20
Answer/Reply:
Be careful,I took this med for two yrs then I started having severe memory loss. It started a little at a time. Like forgetting my keys and went onto forgetting I had my daughter with me at the store (I almost left her but my older daughter said mom you're leaving nikki). Eventally I would get lost comming home. I would call my husband and tell him I had no idea where I was only to find out I was one mile from home!
43 year old Female
Posted: 2009-05-25 17:06:57
Question/Comment:
I have been taking Topamax for about 9 months for severe, daily headaches (5 years worth) and weekly migraines. I honestly believe Topamax gave me back my life! Yes, I definitely had all the side effects -- tingling extremities, memory loss, confusion (just a little), weight loss -- but the side effects went away after about the first 2 months and haven't come back at all. I started at 50mg, and was eventually titrated up to 200mg/day. Until Topamax, other doctors had prescribed various "preventatives" for me, but with no luck. I've found that the trick w/ this drug is to find the right dose for you and STICK WITH IT. It does take a while to work. I found that it took about 6 weeks or so before I started benefitting from it. If you are at your wits end with recurrent headaches, please stick with this drug as you may really benefit from it.
30 year old Female
Posted: 2009-04-25 00:00:52
Answer/Reply:
Ditto to above... I have been on 200 mg daily for the last 3 1/2 years and have gone from 3-4 migraines weekly, to maybe one a month. I was warned of the side affects and yes, I had them every time I upped my dosage too. But still well worth it!.
50 year old female
51 year old Male
Posted: 2009-05-16 17:13:29
Answer/Reply:
I have been on 100 mg of Topamax for the past four years. It has worked wonders for my migraines. I have noticed that there has been some loss of memory. But my biggest worry is I have developed kidney stones have been told that this may be a side effect also. Am wondering if anyone else is having this problem?
58 year old female.
60 year old Female
Posted: 2009-05-21 12:24:10
Question/Comment:
I have TLE (Temporal Lobe Epilepsy). I have also have migranes and headaches. The headacches are at least 4 times a week, and migranes at least twice a month. My Neuro put me on Topamax to help with the headaches and migranes as well as to help controk my seizures better. As my med dosage went up my migranes did too. I ended up in a migrane that lasted for two and a half weeks. Unfortunately, because my husband is military my Neuro was gone so I was unable to get in touch with him. Once my meds reached 400 a day I was in tachycardia and my agression was so bad that the medical staff at the ER was almost injured. Of course if would have helped if they wanted to "deal with Epileptic with a headache". Be sure to monitor yourself. Take notes. This medication does not always do what it should, and affects everyone differently. Somepeople have a REALLY bad reaction to it. For some it is a saving grace for others, it is almost deadly. My condition was so bad that the IV migrain meds and the ativan they gave did not work. It took 6 hours for the ativan to knock me on my rear. Take notes even if you think it won't matter, little things like " I have to pee but when I go I only dribble". just in case. I wish you all the best of luck!
30 year old Female
Posted: 2009-04-12 21:34:52
Answer/Reply:
I am a 54 year old female with a long history of severe migraines. Since I was a little girl about the age of ten is whrn they started. I was on all of the typical drugs like cafergot, imitrex later on and there were others but the list is too long. When my Psych suggested topamax i was almost offended. I was a nurse for 28 years and thought i knew everything. My memory is awful and i do experience a lot of tingling and creepy crawlies but i haven't had a migraine in 6 months! It's almost two years now and i am scared to go off the medicine. I wouldn't want an enemy to feel that pain, but i do need my sensations to be correct if i go to work and need to rely on my senses. Good luck to all sufferers.
56 year old Female
Posted: 2009-04-23 18:26:28
Question/Comment:
I am 37 and experience some facial drawing of the right side. NO migraine headaches just your common headache. My Neuro Dr. put me on 25mg of Topamax and a baby asprin. Day three my headache pain had tripled and the frequencey was daily. During the severe headache pain I was having trouble with thought proccess. Day 6 Speech problems----slurred and stuttering!!!!!!!!!!!!!!!!!!!!! Slurred or thick tounge yes it is a side affect but what about the stutter. Day 8 NOT MUCH BETTER But off the Topamax
38 year old Female
Posted: 2009-04-08 09:02:00
Answer/Reply:
I have been on 50mg Topamax for over 8 yrs now. I use to suffer from daily headaches and frequent migraines. I had very minimal side effects that the doctor had mentioned to me. However, she never mentioned the stuttering and stumbling of words. I have noticed in the past year that this particular occurence had frequented but didn't know the reason. Now I know. But I still think the medicine benefits far out weigh the side effects that I have had.
30 year old Female
Posted: 2009-04-23 22:23:51
Answer/Reply:
I am taking Topamax for my mood disorder. I am on 25 mg and my psychiatrist is gradually going to increase my dosage. I have had a very good experience with this medication in that it is leveling off my moods and shedding inches from my body. Unfortunately, I can't say the same aabout the psychiatrist who first put me on the drug; there was a lapse in our communication and some devasting problems with my insurance company and I had to pay out of pocket a few times. I noticed that my mood was declining and as a researcher I called the TOPAMAX hotline to find out what type of problems I should anticipate. Unbeknownst to me, they told me that I could go through a epilectic seizure if I didn't continue with the med. I was skipping doses trying to keep it flowing in my blood stream and praying that God would have mercy on me since I could afford to keep paying out of pocket. Gratefully, now I have a new psychiatrist and am taking it as prescribed. The thing is that I have been experiencing these spontaneous jerk movements that are dazzle my whole body. I am not certain what is occurring but was wondering if anyone else may be experiencing this effect? Other than that I am pleased!
39 year old Female
Posted: 2009-04-29 13:24:59
Question/Comment:
I have been taking topiramate (Topamax) for about 2 yrs. I get it from Canada. MUCH less expensive. $35 for 100 25mg tablets. I take it for Essential Tremor.
My question is: I have been having Kidney issues the past few months, and I never did before. I did read somewhere that Kidney stones could be a side effect of this drug. Has anyone else had any kidney issues that you think might be related to this drug?
55 year old Female
Posted: 2009-04-01 11:39:54
iGuard.org Answer/Reply:
There are many possible causes of kidney problems, it can be caused by diabetes, hypertension, dehydration, certain medications or other causes. The manufacturer's labeling lists kidney stones as reported side effect in patients on Topamax. However, it has not been reported as a side effect from other iGuard members. If this problem persists or continues to bother you, it may be a good idea to speak with your doctor to see if he or she wants to adjust or change your medication.
Posted: 2009-04-02 14:42:18
Question/Comment:
I am on Topamax also. 50mg. in the morning and 100mg. at bedtime. I myself have found this medication to be a great thing. I and sorry to hear about all of the bad side effects that you all are having from Topamax. I see the my dose is much lower than many others but it is working at this level. I have epliceisy myslf. I was a foreseps baby when born. Never had a migrain til sixith grade, collided heads with another player and had my first migrane, 72+ hours long. In eighth grade changed from migranes to complex migranes, then in to eplicey. With this medication I have been seizure free for a year and can now get my drivers license which I have not had for 13+ years. I hope thing get better for you all. Have a good day.
32 year old Male
Posted: 2009-03-28 18:12:05
Question/Comment:
I started taking Topamax about 2years ago for epilepsie before I started taking this med I was having problems with starring , forgetting things, not knowing where I was at or how I got there, touble with dropig things, and I sumbled for words. Since being on this med I have gotten better as far as the starring , droping things,and not know how I got from point A to point B. My stumbling over words has gotten worst and since I had this before my doctor isn't sure if it's the med or not. She has told me that it was one of the side affects. I had tingeling in my hands, feet, lips, and nose at fist but it got better. sometimes I think I have a hair on my nose and thereis nothing there. this feeling will stay for an hour or so. I tend to loose consentration easily and it takes a minute to refouces on what I was doing. They say this med can change your vision and I feel like my vision has change a lot because my I continualy go in and out of focus.And thay get realy blurry. Sometimes I can't read for all the lettersl running togetherand looking like little dots. I had my eyes checked and the eye Dr. said there was no change at all. My pharmychist says I've been on this med too long . That 2years is too long for this med because of side affects. And that I should have my Dr. change it . This med seems to be working for me and my Dr. dosn't see any reason for chaging it. Who is right?
34 year old Male
Posted: 2009-03-28 15:46:54
Answer/Reply:
I would have to say that I agree with your pharmacist. Your side effects should never last that long....they should go away if anything....
36 year old Female
Posted: 2009-04-18 12:10:56
Answer/Reply:
Dear Sir,
Have you ever been tested for dyslexia? The symptoms you name- stumbling over words, letters running together and looking like little dots, etc.- are the same things my son complained of. Then he was told about having dyslexic symptoms. I don't think these particular symptoms are from Topamax since you stated that you had them BEFORE you started the medicine. Yet, you want to be 100% sure. I would definitely check into the possibility of dyslexia. It can't hurt. It will atleast give you some answers one way or another.
Best of luck to you!
44 year old Female
Posted: 2009-04-20 16:58:20
Answer/Reply:
I am on topamax since 2005 since an auto accident I take them for headache prevention they help me and I have no side affects I do not suffer memory loses and i am 57 years old I think you should check with a doctor on that
58 year old Female
Posted: 2009-04-26 16:44:20
Answer/Reply:
I would really look into talking to someone else about the Topamax. I was on 200mg a day for the last 6 or 7 years. Last year I did get Optical Neuritis (Usally related to MS). After seeing a neurologist he told me to go down lower on the Topamax, but I got the Optic Neurits again. So I think a lot of bad things can be tagged to the drug but I wouldn't go off it without your doctor knowing. I am down now 100 mg a night and probably will stay at that dose. Just my experience. (also had all the tingling in face and body too...still do...I don't know what it is.)
Female 44
44 year old Female
Posted: 2009-04-27 17:47:17
Question/Comment:
I have only been on Topamax for about 4 weeks now, but the side effects are getting to be almost unbearable. I am willing to stay on the drug because of the benefit to my headaches. I have extreme tingling and numbness in my lower extremeties, but especially my knees and the tops of my feet. I sometimes have the same effects in my fingertips and my face. Often my lips and the tip of my nose will go numb. The thing that makes this so unbearable is that I draw blood for a living, and I really need to have feeling in my fingertips to do my job!
28 year old Female
Posted: 2009-03-26 22:40:59
Answer/Reply:
I have been on a gammett of the migraine preventatives and am currently on 300mg pf Topamax a day along with 100 mg Zonegran.
I have been taking 500mg Vitamin C for the numbness and tingling per my Nuerologist and it really does help !!
Yes I did go through the confusion in the beginning , but to have the migraines greatly decrease its worth it.
46 year old Female
Posted: 2009-04-16 22:07:50
Answer/Reply:
My neurologist started me on Topamax about 2 years ago. I went all the way up to 200mg a day (100mg in a.m. and 100mg in p.m.). Prior to starting on Topamax, I would have, on average, about 6 migraines a month, lasting anywhere from a couple of hours to days. I also took Maxalt and Imitrex shots. If they got so severe, I would give myself a shot of Toradol. It took me about 6 months to get over the tingling part (my cheeks, hands, tops of my feet, lips, especially would all go numb). I was supposed to have a surgery recently and they had to give me a Lupron injection to stop endometriosis as much as possible so they could do robotic surgery rather than an open incision (I have alot of scar tissue). I got my first injection in Oct of 08. Over the course of the last 7 months, I have had one migraine! I now take Treximet (a new migraine med) and that stops the migraine. BELIEVE IT OR NOT, I discarded my Imitrex (5 shots) for expiring! Before they were like gold...I would make sure I had enough to make it through the month. I looked back and my last one was Sept 08!!!! I realized that was when my Topamax dosage also was stabilized at 150mg a day (75mg in a.m. and 75mg in p.m.) Both have been lifesavers!!!
46 year old Female
Posted: 2009-04-25 09:07:58
Answer/Reply:
If this helps it took me almost 2 months to get over the severe side effects of Topamax but I am glad I stuck with it. The tingeling comes back every once in a while on my nose but that is about it. I have tried everything else and Topamax has done the job my concentration and memory has actually improved over time (3 years now) I getting ready to graduate from a Medical program and before I would not have had the mental capacity to retain this much information. Good luck I wish you the best!
39 year old Male
Posted: 2009-04-20 14:55:45
Answer/Reply:
I started on Topamax low dosage and because the headaches were so bad the doctor kept raising the dosage., until I was on 300 mg a day. I knew I could not remember things .They kept getting worse. I could not spell little words and could not say my thoughts. everyone said it was old age. my hand were tingling all the time and I wanted to sleep all the time. I picked my meds. at the drug store and when I went to take my pills ,they could not be found. The drug store said they could not refill because it was not time. So for about a week I did not have any and begin to relize that I could think again and spell better.I'm not sleepy all the time now. I went back to the doctor and told her to find me thing else . She said all of that kind would do that way. I said I will just have to have the headache. She gave me another kind and I'm doing a lot better. I'm 57 years old . Female
58 year old Female
Posted: 2009-04-21 17:14:05
Answer/Reply:
I have been on Topamax for 8 months and on a low dose, 50 mgs, twice daily. In the pastmonth I began to experience the numbness and tingling in my hands and feet. I researched Topamax with the other 8 drugs I am taking and found some interesting facts, Since I have stopped the Nortriptiline and Norrotin I very seldom have the numbness and tingling. Also after being on Nexium for 3 years, I have stopped this drug. I have shown my family doctor my findings and he agreed with me. I have found that the doctors prescribe medications to help you but you need to also help educate yourself and them on what you find.
60 year old Female
Posted: 2009-04-24 17:49:47
Answer/Reply:
I am sorry to hear about your side effects but I know what you are going through. I have been on Topamax (300mg/day) for about 3 years now. I had the same side effects at first. Now I am doing fine, only having tingling every now and then. Hang in there and maybe yours will subside as well.
55 year old Male
Posted: 2009-04-24 19:09:04
Answer/Reply:
I take 100 mg in the morning and 150 mg at bedtime and have been doing so for several years now for my seizure disorder. I may have experienced a bit of tiredness in the beginning but it was only minor Now I notice no side effects at all. On the good side, I did lose a little weight when I initially began taking it!
56 year old Female
67 year old Female
Posted: 2009-04-25 17:25:24
Answer/Reply:
I also take topamax. Any side effects that you should have from the medication should be within the first two weeks. These symptoms are also not typical symptoms of topamax that should be ignored, please call your physician right away. By the way I am also an RN. Again, please call right away, these symptoms are very abnormal and not something that you want to keep dealing with---your MD has to know immediately. Betst of luck.
50 year old Female
Posted: 2009-04-25 19:44:26
Answer/Reply:
I've been on 50mg in the am and 50mg in the
Pm for over 1 year before my Neuro had to
Increase the dose to 75 am/pm. I have been
Taking it for over 2 years and have experienced
All of the side effects you have spoke of they
Have for me gotten better. My cluster migraines
Are almost non exsistant. I do still have break through
Migraine but I don't want to increase the doasage.
I am VERY careful about any medication I take
This drug may not mix well with other medications and
I learned the hard way that you must drink water and
Stay hydrated. Don't assume that your doctors are aware
Of the drug interactions look it up or check it out with your
Drug store.
51 year old Female
Posted: 2009-04-25 23:54:40
Question/Comment:
I had headaches for over 40 years. The headaches I experienced were so severe that nothing the doctor or the ER could offer me would help. They were so vicious, that I couldn’t work, drive, read or hold a conversation and they lasted for over 18 hours. My doctor convinced me to try Topamax over three months ago. I was to start slowly and continue until I had no more headaches. I started taking 25mg for a week and then 50mg for a week and then 75mg for a week. At 75mg, I got a bad headache that lasted about four hours and with my Maxalt it went away quickly. Went up to 100mg, 50mg twice a day and since that day, I have been headache free! The side effects I experienced were minor. I did notice the tingling in first month which has subsided and a little weight loss. I was concerned about the possibility of the lack of concentration and memory loss. I am in back in college and getting A’s. So I am concentrating just fine and as far as my memory goes, I really don’t care to remember the headaches, thank you very much.
Headache Free 57 year old female
58 year old Female
Posted: 2009-03-25 13:11:57
Answer/Reply:
I have also taken Topamax for a few years along with Elavil and my migraines did decrease ; but unfortunately, so did my bone density.
My Dr did not even know until I was diagnosed with Osteoporoosis- after years of progresive bone loss and osteopenia, that anit seizure drugs even had this side effect. I had to tell them as I reasearcehd this on my own.
I loved the reduction in headache intensity as well as the weight loss- but now I have to overcome Osteoporosis- get off the topamax completely and take other drugs with more nasty side effects.
be forewarned!!!!
53 year old Female
Posted: 2009-04-21 15:51:32
Question/Comment:
I recently came off of Topamax 200mg once a day to prevent migraines. I am currently working up to 100mg of Lamictal for migraine prevention. I experienced memory loss, a constant feeling of my feet being "asleep," and loss of coordination while on Topamax. I have been off of Topamax for about a week and a half and I am still having coordination problems and my feet are still tingling and numb, particularly when I first wake up in the morning. How long will it take for these symptoms to wear off?
28 year old Female
Posted: 2009-03-13 10:34:28
Answer/Reply:
I too am having Issues with The Temporary loss of Finding the correct words to say and with having memory loss...HOWEVER...Topamax has been the ONLY seizure medication to COMPLETLY control my Seizures...So I myself count that as a Minor side effect and move forward. My friends and family seem to understand that it is a side effect of the medication and help me with my words when forming a Sentence and we go on.
To the young lady who asked about SPLITTING the pills....I did so for about 2 months...had no issues with doing so...JUST MAKE SURE you go to CVS or Somewhere like that and get a Pill splitter so you can be certain to get the pill split completely in half...and there should be no problem for you....AS LONG AS YOUR PHYSICIAN has instructed you to take a half of a pill. I have hung onto my pill splitter in hopes one day I will be weaned OFF of Topamax and will have to slowly come off of the pill and take halves at a time.
God bless you all and Hope you NEVER have another Seizure.....
Destined4More@gmail.com
39 year old Female
Posted: 2009-03-16 21:35:26
Answer/Reply:
I had been taking Topamax for 3-4 years, but had to stop a few months ago because my husband's insurance changed and the co-pay for 3rd tier brand drugs is $165/month -- which we can't afford right now. It's like not having insurance at all.
First a comment, then a question:
Comment -- I have had memory loss and also struggle to find the right words at times. At first I thought this was from the migraine cocktail my doctor had me on (Topamax and Propranolol), but my new neurologist said it's probably the Topamax. There were days I literally could not even remember my zip code or something someone told me just moments before. So I stopped taking the Propranolol and that seemed to help, but not completely. I still have a lot of memory issues although I stopped taking Topamax a few months ago. It's weird -- I have days where my long term memory rocks and I recall things, information, data that I can't explain how I know the answer. But I still suffer with a lot of short term memory loss. While I've never gotten a straight answer out of my doctor when I ask if this memory issue will last, I'm starting to think it will be permanent. The other problem I had on Topamax was tingling in my hands and feet and swelling in my eyes (felt like my eyeballs were going to pop out of the sockets) so my dosage was decreased and that helped. I noticed if I have a glass of wine or any alcohol, the next day the tingling starts.
Question -- while I don't like the memory issues, Topamax has helped control my serious migraines. The patent for Topamax was set to expire this month (March 2009) making a generic possible. Has anyone heard whether that has happened?
45 year old Female
Posted: 2009-03-18 13:21:29
Answer/Reply:
In February my doctor said there's going to be a generic for Topamax coming up!
63 year old Female
Posted: 2009-03-24 10:33:00
Question/Comment:
I recieve my Topomaz in 100 mg form, is it ok to cut them in half to make it a 50mg? I noticed on the comments it says do not crush or chew. Will this alter it effectiveness? I to have the forgetfullness, and loss for words.
50 year old Female
Posted: 2009-03-11 13:25:14
Answer/Reply:
I had to increase my doasage, I asked my regular
Place that I fill my Rx and was told by the Rx'st
That it was ok for me to split the 50mg pills.
She had to call the help desk.
51 year old Female
Posted: 2009-03-25 07:47:53
Answer/Reply:
I was told it was alright to cut them also by a pharmacist, but Italked to my doctor and another pharmacist and since it is a time relesase medication it should not be cut.
32 year old Male
Posted: 2009-03-28 17:40:15
Question/Comment:
Very effective for the "dizziness" problem that was attributed to migraines...UNTIL i reached the "donut-hole" of part D for medicare. then i was expected to pay $700. the company helps supposedly; after assuring them i had part D, i was allowed to apply but had to send income tax forms. since my income was $7500, i was refused on the grounds that i HAD INSURANCE. the point was that the insurance wouldn't pay and they wouldn't accept my application of i didn't have it. frustration time-- then it was HELL-time as i went through withdrawal: the shakes so bad i couldn't walk or hold a cup, blinding headaches, nausea.
Moral: scary drug-pushers aren't just in back alleys.
71 year old Female
Posted: 2009-02-24 20:16:49
Question/Comment:
I was first given Topamax for my migraines as well, I have had them since I was 11 years old. The headaches had gotten so bad that they would wake me up. I had also been dianosed with narcolepsy and since I only sleep 2 hours per night I really need the sleep. My neurologist started me on the Topamax @25mg and raised it until I reached my current dose of 300mg per night. The side effects for me include the tingling of my hands and feet randomly and massive weight loss. I now have no appetite and have to make myself eat once per day to maintain my weight. I also have several other medical conditions and take other medications that could possibly interact with the Topamax, so sometimes I feel like a ticking time bomb, but anything is better than the headache, that is the only pain I cannot block out.
48 year old Female
Posted: 2009-02-24 11:45:35
iGuard.org Answer/Reply:
I can feel your pain unfortunately. I've had migraines, headaches all my life, blamed on Grandparents, allergies, stress, abuse,yata,yata. It stil hurts! My mom had a chiroparacter work on me in grade school w an eloctotroigral,(ow),than later masseurs, which did help. But with my life being very stressful never enough. So, I'm wondering at this pointwhat what to do?
THANX,
Dana Y. Hall
Posted: 2009-03-05 01:42:49
Question/Comment:
I AM 48YEARS OLD (FEMALE)
AND I AM TELLING ANYONE THIS IS THE WORSE DRUG THAT I HAVE EVER TAKEN IN 43 YEARS . I HAVE EPILEPSY I STARTED TAKING MEDICATION WHEN I WAS 5 YEARS OLD . BUT I HAVE NEVER EXPERIENCED SIDE EFFECTS LIKE I DID WHEN I WAS PUT ON 300 MG OF TOPAMAX A DAY. I BELIEVE THAT ALL DR'S SHOULD TELL YOU WHAT YOU CAN EXPECT TO HAPPEN WHEN TAKING ALL DRUGS AND NOT LET YOU FIND OUT THE HARD WAY .I ONLY TOOK TOPAMAX FOR 3 1/2 MONTHS THEN I QUIT TAKING IT BECAUSE OF ALL THE SIDE EFFECTS THAT COST ME MONEY . I HAD NO IDEA WHAT WAS GOING ON SO I WENT TO THE HOSPITAL, I WOUND UP GETTING INTO A ACCIDENT NO ONE TOLD ME DO NOT DRIVE WHILE TAKING IT. I FEEL I SHOULD SUE THE DR THAT PUT ME ON IT . I ALSO LOST MY LISCENSE BECAUSE OF IT . NOT FAIR AT ALL.
49 year old Female
Posted: 2009-02-22 12:09:52
iGuard.org Answer/Reply:
I'm really sorry that had to happen to you. Hopefully if you are seizure free for over a year you can get your license back. Some doctors are really good about telling their patients, others are not. I have made it a habit to read the package inserts, talk to my pharmacist and read everything I can about the medication on the internet so I can be an informed user. When I question what the doctor has told me or not told me, I call and leave a question with the nurse. They soon realize I am taking a very active informed role in my care and respond to my questions. I too had some rough times with Topamax but it was the least of the evils of all the other choices. I finally got my dosage adjusted was able to drive and am doing OK now. Good luck to you.
Posted: 2009-03-05 15:55:44
Answer/Reply:
Dear 48 year old female,
I'm sorry to hear about your problems with Topamax, I for one have had success with the medication. It sounds like your doctor started you out at a dose that was WAY TOO HIGH! That was most likely the reason for all your side effects and other problems to the medications. When my doctor first put me on the medication, he started me out at 50 mg/bed time, 25 mg/in the morning. He worked my schedule of medication over a period of time after I was on a particular dosage, I would be evaluated as to how that dosage was working for me. If the Topamax was not working properly, then he would slowly increase the dosage up by another 25mg-50mg increments no more than that at any one time. My doctor never would have started me at such a high dose as yours, I personally don't know any doctor that would start a patient at a high dose such as yours. Doctors are supposed to start at a lower dose and work their way up to the larger doses. Your body most likely could not handle such a high dose as what your doctor prescribed for you. I'm not even up that high yet, I don't even think I will ever get that high, I'm still at 150mg/bedtime and 50mg/morning. I've been at that level now for 3 years with absolutely no side effects. My doctor slowly brought me to that level and leveled me off at that level. I think that is the key, a patient I believe has to be slowly raised up to their level in small increments and monitored at each stage for a period of months before the next change of dose, that's the way my doctor did it, and it worked quite well.
I do hope that what ever treatment you are now on it is working for you. I wish you well in the future with your health care.
51 year old Female
Posted: 2009-04-07 12:04:11
Answer/Reply:
And my doctor started me and my husband on it both at 25 mg daily, increasing by 25 mg per week until we were at the level she wanted us at, which would have been 150-200. After that, we stayed at a dosage level for longer in between increases, but then she may have increased it by 50 mg at a time after that.
47 year old Female
Posted: 2009-06-15 04:07:12
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