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Global Patient Feedback for Topamax (Topiramate) ( Post a comment )
Question/Comment:
My neurologist placed me on Topamax, 100mg twice daily, back in 2003 for cluster headaches. Currently, I am experiencing cognitive changes. In the past I rarely had a problem finding exactly the right word for expressing myself in either written or verbal form. However, I have noticed, with great frustration, that often I am unable to access the word I want. Either I ask my husband or use a thesaurus. My verbal and language skills were always excellent, and this new chink in the works is more than just a senior moment issue. Thankfully, it is not Alzheimer's. My neurologist told me this is a known side effect of Topamax. Is any one else having the same experience?
55 year old Female
Posted: 2009-02-19 16:04:43
Answer/Reply:
I have been on Topamax now for 2+ years and am now on 400mgs a day--- i find the same side effect-- maybe not as severe, but it takes me a second or two to sometimes find myself trying to describe what I am trying to say at times. But to not have the daily constant migraines that were trauma induced as the result of a drunk driver, i guess a second or two delay i can live with.
37 year old Female
Posted: 2009-02-20 21:26:33
Answer/Reply:
I have had migraines for 18 years (since the birth of my son), and I have been using Fiorinal for the last 3-4 years. It has progressively stopped working. My new doctor wants to try preventative instead of just treating so we are using Topamax. I'm up to 75mg, and still getting some migraines - say 2-3 a week. I tried to use the Fiorinal in conjunction with the Topamax and got very sick, even though there is no known problem with these two medications in relation to one another (I am sensitive). So, today I have another headache, doing my best to pray through it, relax, and deal....without the Fiorinal. I haven't had to in 4 years, and I'm scared. My doctor is on vacation and I live in a rural community. Hospital is 45 minutes away...Does Topamax get more expensive the higher dose you go up?
36 year old Female
Posted: 2009-02-21 14:39:40
Answer/Reply:
It does get a little more expensive the higher the doese and you do have some tingling in your fingers hands and toes for a while until you adjust to whatever dose you are on. However once you find what is right for you then the tingle goes away comes only very rarely for me anyway. and once your leveled of and know what your dose is going to be you can get on a program where you are buying 3 months worth at a time for the price of only 1 or 2 months depending on the pharmacy plan you are on. I fully believe Topomax to be well worth the cost and what ever side effect I personally have experienced . I have had no cognitive problems I am a college student currently maintaining A's and B's and I have a 3.33 GPA
48 year old Female
Posted: 2009-03-18 15:42:40
iGuard.org Answer/Reply:
Actually, this is a very common side effect - 20% of iGuard members taking Topamax report memory or speech problems. If this symptom continues, you may consider following up with your doctor to see if he or she is willing to adjust your medication - a lower dose Topamax may cause fewer or a lower degree of side effects.
Posted: 2009-02-23 14:12:49
iGuard.org Answer/Reply:
Yes, confusion, word finding difficulites, processing difficulties are known side effects of topomax. I also took it for cluster headaches and my family and friends immediately noticed something wrong with me, as did I, particularly since I am a speech pathologist. I will not take it ever again. I was so confused driving, I couldn't figure out if I was driving on the correct side of the road or not. I would see if there is something else you can take.Neurontin is a bit cleaner drug(and has been around longer), as well as antidepressents(amatryptiline, nortriptyline) are successful with cluster headaches. Good luck, cluster headaches are pretty aweful.
Posted: 2009-02-26 11:54:41
iGuard.org Answer/Reply:
I've been taking Topamax for the past 2.5 years for headaches that the neurologist thinks is trauma from a car accident that I had almost 3 years ago. They can't pinpoint the nature of the headaches, so they just say Trauma from the accident. Getting Topamax was a Godsend for me! It's the ONLY thing that I've taken that works and it took 6 months before they prescribed Topamax because they wanted to try all other medicines first. But I also find myself affected by the memory loss...there are times when I'm in a meeting with a planned presentation that I know and have presented time and time again and all of a sudden, my mind will just go blank! I can't remember what I was going to say next. It started happening more frequently over the last year. I was told by another doctor to start doing puzzles, like crossword puzzles, suduko and logic puzzles to try to strengthen the mind. And I find it helps a little. I try to do at least 2 crossword puzzles a day (and sometimes I'll know the answer but my mind won't recall it), 1 sudoko and at least 1 logic puzzle. I find that it's not 100% but I feel like my memory is a little better. I hope this helps!
Posted: 2009-03-04 19:57:28
Answer/Reply:
Yes, I have had similar experiences. I am actually taking Topamax as a nerve stimulant for carpal tunnel syndrome. To not have to experience the excruiating pain in my hands and arms is well worth a little brain burp.
43 year old Female
Posted: 2009-03-05 14:53:39
Answer/Reply:
YES! I have had the same problems with Topamax. I take it for Migrane headaches and focal seizures, i.e. Migralepsy. I was gradually started on the drug and worked up to 100mg twice a day. Since then I have had no symptoms but side effects yes. I felt like the blithering idiot. My daughter also has Migranes and is also on 50mg daily and she has experienced the same thing but not to the degree I did. I finally tapered back to 50mg twice daily with no symptoms and no side effects. I had my Topamax level taken last week but not heard back from the results yet. I hope I don't have to increase it because I can actually play Bridge and remember the cards. I have not had problems with my verbal skills since I have reduced the dosage. I do take the recommended dose of Vit D and Calcium Citrate along with the Topamax. I had to stop the Vit C because of contraindications with a bladder condition. I also try to drink plenty of water daily.
64 year old Female
Posted: 2009-03-05 15:41:42
Answer/Reply:
I have simalar I forget words People i have none for years i can visualize but there not there. My neurologist says this is common for topamax Iam 200mg twice a day. for epilepsy and migranes. What i hate the most is tingling in fimgers which is from Topamax.
40 year old Male
Posted: 2009-03-06 09:07:29
iGuard.org Answer/Reply:
Absolutely! I have been on Topamax for over 7 years for for idiopathic stabbing headaches (a form of cluster) and have suffered from from migraines for years! I have been at as high of dosage of 300 a day but am now down to 100 mg a day but desparately want to get off them. I hvave found that my headaches have diminished - no more of the 50 or so ice pick stabs per minute but have not completely disappeared which is why my neurologist will not let me go off off them. They may have helped my migraines, but I also take Imitrex for those.
--54 year old female
Posted: 2009-03-06 23:22:20
iGuard.org Answer/Reply:
I do and I am only 34 years old. I went from a weekly volunteer at pre-school and kindergarten to going bi-weekly just because it's hard for me to find the words to help tutor the kids. So embarassing!
Posted: 2009-03-06 21:37:30
Answer/Reply:
I take 600 mg twice daily, I started have migraines after a car accident in 1998. I feel like I'm scattered brained. I forget how to spell, I repeat myself. But, I must say that Topamax has helped me from having a headache everyday to having them 2 to 3 times a week. Every medication has a trade off.
Female, 45 years young
47 year old Female
Posted: 2009-03-08 15:40:04
Answer/Reply:
I too have (am) experienceing the cognitive changes you discribe above and it is quite disconcering. However, I feel I can keep a thesaurus and dictanary close at hand as well as close frends on call for opinions on important documents and communications if and when I can make use of them. This may seem extream; but I know I cannot continue to live with the migrains and cluster headaches that I suffered without Topamax.
40 year old Female
Posted: 2009-03-08 18:26:22
Answer/Reply:
I have the same problems. My short term memory is horrible and the Dr. blamed it on the Topamax, and then referred to it as "Dopamax", because of the way it affects your memory.
Also, I wasn't having migraine headaches, I was on it for pain, but now if I haven't had it for a couple of days, I now get migraines if I DON'T take it
52 year old Female
Posted: 2009-03-20 02:19:40
Answer/Reply:
YES! I have experienced I think almost all of the terrible side affects of this medication. Unfortunately it seems to be the only thing I can take for the what is going on with me and it is helping that. When I first started it is was horrible. I can only remember this and that about the first 6 months I was on it. My doctor told me it gets worse before it gets better to hang in there so I did. He was right. Thankfully after the first 6 months the sideaffects seemed to lesson a little. I had a great vocabulary and memory. I use to be able to quote something word for word I read or heard 2 years ago. Now I'm lucky if I can tell you what you've told me this morning. Words always fail me when I'm trying to explain something (and I used to teach). Also, it is very hard to concentrate on more than one task at a time (if I want to get it done right). These are just a few side affects I have. Thankfully my dose was lowered a few months ago and it's gotten a little better. Your deffinately not alone. Hang in there if the medicine helps and the sideaffects don't cause more problems than what you had before you were on it. My way of dealing with all of these sideaffects is knowing that it does help my condition which is worse than the sideaffects. Go figure. Good luck.
33 year old Female
Posted: 2009-03-10 13:58:36
Answer/Reply:
My neurologist placed my on Topamax 150mg, twice a day. I have been taking them for over a year now. I have been going threw this too. At times I may not be able to find the word that I am looking for. At other times will know the word that I am wanting to us, but not even know where to start when it comes to spelling ( it can be the smallest of word too). It can be very frustrating!
27 year old Female
Posted: 2009-03-17 14:12:04
Answer/Reply:
My neurologist placed me on Topamax 150mg, twice a day. I have been taking them for over a year now. I have been going threw this too. At times I may not be able to find the word that I am looking for. At other times will know the word that I am wanting to us, but not even know where to start when it comes to spelling ( it can be the smallest of word too). It can be very frustrating!
27 year old Female
Posted: 2009-03-17 14:12:33
Answer/Reply:
I am a 68 year old female with cluster/migraine headaches on Topamax for 3 years but much lower dose. 75mg works for me (a day) in keeping headaches at bay with absolutely no side effects. I started at 100 twice daily and had problems as you mention then slowly withdrew with doctor permission.
69 year old Female
Posted: 2009-03-17 15:20:04
Answer/Reply:
Topamax does have a side effects with word association you sometimes you feel like you are older then you think. Also, it effects the taste of carbonated drinks. If your job requires alot of memory this is not the medication for you. I work for a doctor, talked to the drug maker, and have been on the medication myself for four years and I am currently tapering my medication down to come off. The longer I have been on this medication the worse my memory has become. My migranes were 4x a week and nothing else worked but I am considering trying something else.
62 year old Female
Posted: 2009-03-17 17:34:51
iGuard.org Answer/Reply:
I've been reading some of the comments posted. I sometimes wonder maybe the doctors have the patients on too high of dosage that they are expeiencing these symtoms. My doctor started me on 150 mg a day. I suffer with migraines daily. This was in 2003 or 04. I have since weened back to 50 mg a day, and am doing pretty good. When I first started, I did experience tingling in my hands and feet but that passed. I also lost weight, but am back to my normal weight now. As far as memory/concentration, sometimes I fell like I have trouble concentrating, but I know that I could not live with my migraines, so I just need to deal with that.
Posted: 2009-03-19 12:24:55
iGuard.org Answer/Reply:
Ah...good old "Dopamax" aka Topamax. Cognitive function impairment - fairly sure that is listed on the side effects pamphlet most of us throw up when we get our scripts filled. I am currently weaning off my Topamax but not due to my dull-brain moments but to other side effects - excessive fatigue, hair loss, being cold and yup my thyroid is functioning nicely. I've been on the T-max for about 2 years now started at 50mg per day and gradually went up to 200mg per day split into an AM & PM dose of 100mg. Hopefully the migraines that were plaguing me on a near daily basis when I started are under control. So, I thank the makers of Topamax as it did what it needed to do but I will miss my "Dopamax" moments. Not sure how long it takes to fully get out of your system though...we shall see...
Posted: 2009-03-19 13:06:05
Answer/Reply:
I was on Topamax for about 2-3 years, it helped a great deal with my migraines. When my doctor wanted me to slowly come off of it, it scared me, because I didn't want my migraines to come back, but eventually I slowly took myself off of the drug. It has been a couple of years since I have taken the drug and I have effects of the drug. I have noticed in the last year my words don't come out like I want them to. I want to say a certain word, but another will come out instead. At times it is really frustrating, because people look at me funny when i say things.
39 year old Female
Posted: 2009-03-19 18:34:38
Answer/Reply:
My neurologist placed my on Topamax 50mg, three times a day,over a year now. I had been taking them for at least 6 months and found it very hard to cope. I had to drop down to 25mg once a day and I take it 30 minutes before bedtime as it helps put me to sleep. After reading these reviews I now realize the same thing had been happening to me also. Sometimes the migraines get so bad I end up taking MaxAlt tab.
51 year old female
52 year old Female
Posted: 2009-03-23 12:55:20
Question/Comment:
I have been on Topomax 200 mg 2 tabs. twice a day that is a total of 800mg of topomax a day I have been having complex partial seizures for 11 years or more and gran mol for 10 years. I was started on other anti seizure medications and was allergic or it affected my liver very badly. Since being on Topomax I can say I went from haveing migraines and seizures on a daily basis where I was in the hospital more then out to rearly having migranes and well though I still have problems with seizures a year ago december 31 the Dr implanted what is called a vagal nerve stimulator and it is wonderful along with the topomax.
43 yr old female
45 year old Female
Posted: 2009-01-19 17:42:43
Question/Comment:
I have been on topamax for over 10 years for seizures. I am currently at 350mg / day, after asking my doctor to lower my dosage as I was experiencing memory loss. I have also experienced tingling in my hands and swelling in my ankles and feet. I guess the question is whether the side effects are worth not having seizures. So far, I can function without the fear of seizures, so I am willing to put up with the side effects, which are far less of a problem.
53 year old male
55 year old Male
Posted: 2009-01-19 15:01:56
Question/Comment:
I have been taking Topamax 300mgs 2 x day for the past 7 years. There is no 300mg pill so I must take a 200mg and a 100mg pill together but that doesn't bother me. I have severe neuropathic pain which is why I was prescribed the Topamax and it has helped, in combination with other pain medications. I also used to get severe migraines on average 3 or 4 times a month. But in the past 7 years since I've been taking Topamax, I have had only 5 migraines the entire time.
I did notice some side effects. The one that bothered me the most was it made my eyes unable to stay still. They would move quickly from side to side, and I couldn't really focus or pay attention to anything. This happened when I first started taking it, and with each increased dose as well. At the same time, I experience difficulty with speech. These go away once my body adjusts to the new dose. However, I've experienced memory loss/difficulties and that has not gone away. It's not severe but it does become very annoying. I also get the dry mouth - I've found that Oasis moisturizing mouthwash by Sensodyne works very well. It keeps my mouth from being so terribly dry and also my lips from getting chapped because of it.
I take several other pain medications which cause drowsiness, grogginess, nausea, dizziness, fatigue, indigestion, constipation, and weight gain. So I would think those other meds, along with Topamax, are the cause of those symptoms.
I'm very fortunate in that my insurance does pay for all of my medications, and I have no out-of-pocket expense. But Topamax is extremely expensive. As I said, my dose is not available in one pill, so I must take 2 pills to get my 300mgs. and I take them twice a day. The 100mg tablets bottle of 60 is currently $383.34 and the 200mg tablets bottle of 60 is currently $448.30. It seems reasonable to assume that if they made 300mg tablets, a bottle of 60 would cost less than the $831.64 my insurance pays for 2 separate pills (bottles) to make up the dose I need (based on the price difference between the 100mg and 200mg).
Ortho-McNeil Neurologics HAS a program to help patients who don't have insurance and can't afford to pay for it on their own, or whose insurance will not pay for Topamax. GO TO: (copy this link into the address bar in your browser)
https://www.ortho-mcneilneurologics.com/ortho-mcneilneurologics/
On that homepage you will see a link that will take you to another website where you will select the drug and find the information about several programs to help patients pay for Topamax and other medications. Ortho-McNeil Neurologics participates in Access2Wellness.
46 year old female
47 year old Female
Posted: 2009-01-02 21:45:53
Answer/Reply:
Thank you so very much for this web site as my brother in law has chrohns disease and alot of his meds are not covered by his insurrance and they are a low income family and he is unable to work so completely relies on the income my sister makes for there family. So im sure this will be a big help to them. Again Thank you so very much.
Sincerely,
Wanda Crider
42 year old Female
Posted: 2009-01-18 12:27:55
iGuard.org Answer/Reply:
Dear Sufferer,
Despite which heartbreaking ailment you suffer from, no doctor should be properly prescribing you Topamax in one, daily dose. In fact, three are best, all though that is pretty unrealistic for adults these days. Therefore, it is larger doses, twice a day.
For you, for example, it should be 175 and 175, for example...morning and evening. Topamax has a pretty good "half life", which your doctor (if they are any good) can explain to you far better than I can, but clearly, can't be bothered to. "Dosing" is just as important with these types of drugs as the drugs themselves....trust me. Feel better, sweetie. :-) Stick with it and remember one important thing...you have a voice. Use it.
Just because they are doctors, doesn't mean they are always right...listen to your body.
All the best.
Posted: 2009-02-17 01:22:49
Answer/Reply:
You mentioned you have memory loss. Please see my post above (2/19/09). What types of things are you having trouble remembering?
55 year old Female
Posted: 2009-02-19 16:09:02
Question/Comment:
I AM 47 YEARS OLD AND HAVE TRIED EVERY THING FOR MIGRAINS, TOPAMAX HAS BEEN THE ONLY THING FOR 2 YEARS THAT HAS STOPPED MY MIGRAINS. I AM HOWEVER ON A VERY LOW DOSE, AND TAKE 2 TIMES A DAY. I HAVE ONLY HAD ONE MIGRAIN IN 2 YEARS, COMPARED TO 2 TIMES A WEEK. MEMORY LOSS, I DO NOT THINK I HAVE ANY OF THAT, I AM THANKFUL FOR THAT. I HAVE NOT HAD ANY SIDE EFFECTS THAT I AM AWARE OF. MAYBE I AM THE LICKYONE, IN THAT REGUARD. AND I DO HAVE INSURANCE, AND IT IS COVERED EXCEPT FOR MY CO-PAY.
I APPREATE THE UP-DATES ON MY MEDICINES, VERY MUCH, THANK YOU,
48 year old Female
Posted: 2009-01-02 14:11:04
Answer/Reply:
I am 46 years old and my OBGYN put me on Topamax , I have been on the Topamax since October of 2008 for migraines it has helped me wonders, I still get slight headaches, but nothing like I was getting before, I also have lost weight on this, ( every womans dream right.. ) feel free to contact me... jb8ker41@yahoo.com.
47 year old Female
Posted: 2009-01-29 13:48:32
Question/Comment:
I have been on Topamax for my migraine headaches for about 7 years now. It has working great for my migraines and I hardly ever had to take anything more than an advil when I felt a headache coming on. I was getting migraines a few times a week. This past year the migraines were back full force and my doctor added Inderal to my topamax dose which has helped. I think my body has gotten used to the topamax and I really don't want to increase it. I actually decreased it because the memory lapses were getting too bad. I didn't even realize it but my friends and family would tell me things and I didn't even remember conversations. Also recalling words which is still a problem mostly when I get upset or mad. The inability to form words is extremely annoying. I now am only taking 50 mg a day. I did experience the tingling on the higher doses or my hands would just plain shake. I did also lose some weight but that stopped after the first year. All in all the medicine works well for migraines but the side effects are kinda scary. I would suggest lowering the dosage if you can. As for sleepiness I never really noticed once getting used to it. I am a night owl so it does not effect me. Also the low sex drive could be true since I used to have a very high one and it is pretty normal now. Good luck to anyone who tries this.
37 year old Female
Posted: 2008-12-28 17:29:57
Answer/Reply:
I am on a very low dose of Topamax (50+100 a day). It is for neuropathic pain. But now I have tremors. I don't know why I have tremors, but I don't think it is due to the Topamax -- but to perhaps the Amantadine (I just don't know).
I am very happy with the Topamax. It has worked very well for me, and a very pleasant side-effect has been that I have experienced is that I have lost about 10-15 pound of weight! I sure don't mind that!
66 year old Female
Posted: 2009-01-21 18:07:27
Answer/Reply:
I too have experienced tremors in my left hand from what I believe is related to Topamax. (25 mg, 4x/day) I take Depakote along with it, but, never noticed any tremors till I started (later) on the Topamax. I take these for a seizure disorder.
52 year old Female
Posted: 2009-01-27 12:51:41
Question/Comment:
I am on Topomax for Migraine. Thankfully covered by insurance. I have not experienced any knee of breakout mentioned after using it for about 2 years now & it has been a great migraine preventative. Cut way down on my use of Imitrex & it did cut down my appetite. I do experience some memory lag-time problems - nothing too serious, though sometimes a bit embarrassing since I'm a teacher - of adults. I just joke that it's CRS from my age - and if they're not old enough to know, then they will just have to wait.
Overall - I'm glad I'm on it, have had kidney stones twice, think as a result. But still worth these side effects
59 year old Female
Posted: 2008-12-28 12:57:07
Question/Comment:
I have temporal seizures and take 200mg twice a day of topamax, i am very forgetful, still have some seizures, muscle weakness, the headaches are like being hit in the head with a hammer,lowered sex drive, can get short tempered, or cry very easy. Whats scary is when you get lost in your own house. It is like being on a rollercoaster. I feel like I am alone here and its like the doctors only listen to what they want to (they never really hear us). As bad as it sounds i do function better with the medication than without it. LOL, but there has to be something that can be done from these side effects that arise from this medication.
49 year old Female
Posted: 2008-12-28 09:04:09
iGuard.org Answer/Reply:
im similar 2 u on 150mg Topamax for last 7 months due to chronic menstrual migraine which had been getting gradually worse 1 to 2 attacks a week. Im finding forgetfulness very hard to cope with and fall asleep early in the evening. Practically no nights out or social life any more very weepy at times. Still im better on the drug than off it. Also feel v cold on Topamax.
Posted: 2008-12-29 16:07:08
Answer/Reply:
I understand fully how you feel. There are so many subtle side effects that the medication and the illness itself presents. Like lack of self-confidence. You know you are forgetful, you know that you can walk into a room and not know why you went there. Yes, as we age, we become more forgetful, but for the epileptic it is more than that.
If you work at a job, your organizational skills are less than perfect. You may have years of experience, but one slip up or one small blip of a seizure could lose you your job. Yes, the Topamax helps, but the twitches, the tingling in the hands, the joint pain, etc. drives you crazy.
Then the doctors, who DO NOT LISTEN, pump up the dosages, making us zombies or the ultimate couch potatoes. It is a vicious merry-go-round that really kills our ambition. In my case, I took matters in my own hands. I found a level of medication that I could live with, that I could handle life with. I found clarity, concentration, etc. I think the doctors play guessing games with our dosages and if we don't call back, then we're fine. Nice.
The brain is intricate and our seizures are as individual as we are. I hope we can find answers to epilepsy and how to rewire our brains so they function properly. Maybe not in my lifetime. I still say it is a genetic disorder and needs to be treated as such.
60 year old Female
Posted: 2009-01-20 10:18:46
Answer/Reply:
You are amazing!! I am just changing from Lamictal to Topamax and the same old fears of "side effect!" You seem to understand the Topamax when it is used for epilepsy. I too call a small ..... a BLIP. I wish we worked together. Please tell me how you deal with the organizational problems. Thank you Amazing Lady
60 year old Female
Posted: 2009-01-28 02:13:22
iGuard.org Answer/Reply:
I believe you when you say siezures are genetic. That the doctors dont listen. Just pumping up the dosage every time you call in with a complaint or question. meds are not working all the time on my daughter, even after a brain surgery.Now its either change of meds, or another surgery to remove the complete hippocamus on the left side. Whats a person to do, Doctor says 80 per cent just like last time.
Posted: 2009-03-10 18:42:53
Question/Comment:
I would like to know why Topamax is SOOOO expensive. Without insurance 100MG is over $400 for 60 pills. I can drive 3 hours to Mexico for the same exact pills (I checked) and it is $144. I tried going online to see if I could get help from the manufacturer, NO HELP. This is outrageous. In this economy, how could they charge such an outrageous price while our neighbors to the north and south (Canada and Mexico) do not?
60 year old Female
Posted: 2008-12-27 11:08:15
Answer/Reply:
For the woman who commented about the PRICE of Topamax and about attempting to go online to FIND HELP FROM THE MANUFACTURER:
Ortho-McNeil Neurologics HAS a program to help patients who don't have insurance and can't afford to pay for it on their own, or whose insurance will not pay for Topamax. GO TO: (copy this link into the address bar in your browser)
https://www.ortho-mcneilneurologics.com/ortho-mcneilneurologics/
On that homepage you will see a link that will take you to another website where you will select whether you are a patient, caregiver, etc. The next page will allow you to choose the drug and find the information about several programs to help patients pay for Topamax and other medications. Ortho-McNeil Neurologics participates in Access2Wellness which provides access to one of the broadest selections of assistance programs that offer more than 1,000 prescription medications for free or at a discount to those who qualify.
One of them is Patient Assistance Programs. It includes nearly all the medications available from the Operating Companies of Johnson & Johnson. This includes Ortho-McNeil Neurologics, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc.
Good luck to you, I hope one of the programs will be of some help.
46 year old female
47 year old Female
Posted: 2009-01-02 23:00:15
Question/Comment:
i have noticed that since i've been on Topamax , my face has broken out with bad skin problem, ( blotches,bumps,) i have been on this medication for 2 years and take 100mg a day. has anyone else experience this problem?
53 year old Female
Posted: 2008-12-26 10:51:36
Question/Comment:
I was taking topomax for my migraines, I was taking 50mg at morning along with Levoxyl for thyroid and 50mg at night. Although it helped me loose 10lbs I did not see a significant decrease in my "menstral migraines" that I get 2wks prior and 1wk after my cycle. I did however experiernce knee pain, it got to the point I could not kneel and was having problems going up and down stairs. I also noticed a difference in my memory, I could not remember simple things like recalling names of people and items. After taking it for almost 6 months I stopped taking it, also due to the cost, I could no longer afford the $75 month. I have been off of it for a few months now...gained the 10lbs back ASAP! My knees and legs are back to normal and headaches are still the same...no change on or off the topomax.
41 year old Female
Posted: 2008-12-20 09:41:46
Answer/Reply:
I also am on Topamax and am experiencing knee pain, mostly in my left knee. I never associated it with the Topamax. That is very interesting. It is a burning sensation in the upper part of the knee. It isn't due to strain or a workout. It just happens if I've stood for a long period of time or for no reason at all.
60 year old Female
Posted: 2008-12-27 11:05:01
Question/Comment:
Ive have seizures all my life Ive also have had real bad migraine headaches and but not as bad when i was on my old medicine Dilantin they switched me to topomax Ive noticed that they have gotten worse they are more often and I'm having a lot of confusetion I've told my doctor he seems to think that their is nothing wrong has any one had this happen to them ? please help
42 year old male
43 year old Male
Posted: 2008-12-17 16:34:20
Question/Comment:
I also have trigeminal neuralgia--which is very painful. Just to let you all know that topomax CAN cause kidney stones--which I had, so my dose was cut down to only 50 mgs, which is practically nothing. I am also on lamictal and neurontin--so those help to cover the pain.
50 year old Female
Posted: 2008-12-17 16:27:11
Question/Comment:
I have been Taken Topamax for the past 2 1/2 yrs. mixed with the following: Lamictal, Cymbalta,Baclofen and Seroquel at Bedtime. This is to keep my Trigeminal Neuralgia pain away. That began very severe at the end of Dec. 2003. till I found a Pain Management, MD whom was able to pin point where my facial pain was coming from, in Feb. of 2004. When she did the mixture of pills, with high enough doses to kill an elephant (but not this one) Withing 7 days I started to feel relief and the feeling to shoot my self began to subside. I was at a point, that I no longer pray for a cure, I was praying not to grab my handgun and ended. To learn more about Trigeminal Nerve Pain visit http://www.fpa-support.org/aboutfp/index.html
47 year old Female
Posted: 2008-12-15 06:20:58
Question/Comment:
Is there an herbal supplement that is just as effective? I do not care for the lowered sex drive either. I have been on this medication my entire married life! It's horrible for that!
52 year old Female
Posted: 2008-12-12 16:03:44
iGuard.org Answer/Reply:
I have been taking topomax and relpax for my Migraines for over 6 months, A great Herbal remedy is pure lavander oil when you get a sign of a migraine or get one rub a small amount of the lavender oil on your forhead and your headaches are gone, Pure and natural but yet simple and you don't need to see a doctor for this either. It works I have tried it several times.
Posted: 2008-12-23 12:40:54
Question/Comment:
I have RSD in my left leg, ankle and foot. Has anyone used Topamax for RSD I tried Lyrica, but i could not take the full dose because I felt spacey. My doctor prescribed Topamax. I am supposed to take 25mg at bedtime for one week and then increase the dosage 25mg each week until I reach 100mg. I take 75MCG of Synthroid and 600mg of Calcium 2x a day. Is it safe to take Topamax with these medications? After reading all of the side effects I am hesitant to take this medication.
53 year old Female
Posted: 2008-12-01 21:21:37
Answer/Reply:
I also have rsd, I have it in my right leg, foot, and ankle. I have been on topamax for about 2 years now. The only real side effect I had was I lost a ton of weight, which wasn't a bad thing. (I was on neurontin before it for years and it caused me to gain 30 to 40 pounds). I also belong to a rsd support group and a lot of the people are on topamax, as far as I know they don't have any major side effects from it. Good luck with the topamax.... unfortunately I know how horrible the pain is from rsd.
29 year old Female
Posted: 2008-12-04 01:07:16
Answer/Reply:
My doctor prescribed the same dose for me for migraines. After the second week at 50 mg, my 4-5 headaches a week went to 0. So I asked my doctor if I could stay at 50 instead of increasing to the 100mg. He agreed that if it worked at a lesser dose, less medicine is better. (My point - less side effects). I been headache free for 3 months now. (2 small ones that tylenol took care of) The side effects I have are tingly hands and feet that usually last about 15 minutes right after I take the medicine, and I can no longer drink carbonated drinks. I also have a lose of appetite - lost 10 pounds. Fogginess only lasted a few weeks until my body adjusted. This medicine does 'sound' scary, but can be very helpful. Hope this information helps you.
52 year old Female
Posted: 2008-12-19 08:27:56
iGuard.org Answer/Reply:
haha, ok so I'm commenting on the carbonated drinks....It just dawned on me when I was reading your post...Is it because of the Topamax I can no longer enjoy my soda???? :)
Posted: 2009-01-21 10:30:53
Question/Comment:
I have been on Topamax for about 2 yrs now. I don't have any sdie effects. I have migraines and it has helped tremendously. I even started getting mini-seizures beacause of the migraines but since i started taking meds I haven't had any problems.
34 year old Female
Posted: 2008-11-21 04:08:07
Question/Comment:
I've been taking Topamax for 5 years now. I've had terrible memory loss. Worse is the exhaustion. It has gotten so bad in the past two years that I come home from work and just go to bed. I even had a car accident where I totaled my car because I fell asleep while driving. If I stop taking the topamax my migraines come back.
43 year old female
44 year old Female
Posted: 2008-11-21 01:15:35
Answer/Reply:
Can't they give you something different?
39 year old Female
Posted: 2008-12-03 14:27:53
Answer/Reply:
I have been taking as a cocktail of drugs: topamax, cymbalta and adderall xr.....the adderall really helps with the affects of deep deep depression and sleepiness BUT it is very addicitve....might be helpful. Taking this drugs and learning skills for mood disorders has helped me come a long way. GOOD LUCK!!
33 year old Male
Posted: 2008-12-10 17:46:26
Question/Comment:
I have been on Topamax for about a year for migranes. When i Initially went on it I was on the pill. I was having spotting for weeks on end and when I researched the meds I found out that it was not compatible and had mirana an IUC put in, which is now my birth control. I am still having bleeding /spotting. Does anyone else have these problems while on Topamax? The IUC should make my period almost non existent and before i went on topamax i was pre-medaposal. fyi i do have tingling in my feet and hands but only if i cross my legs or sit on them. i'm notsure about the soda i don't drink it but i did notice memory issue the first few months until my meds were settled ..now i have been on 75 mg in the morning and 75mg in the evening for about 1 year and all memory issues are for the most part ok. my migraines are down to only around 1-2 every few months.
36 year old Female
Posted: 2008-11-16 07:59:44
Answer/Reply:
Spotting with the Mirena is actually common even if you didn't have that issue before you had it inserted. It comes with having an IUC inserted. Some people have full periods, some spot here and there, some never bleed while they have it.
33 year old Female
Posted: 2008-12-18 20:21:48
Question/Comment:
I took this for a few months and when I heard it could cause birth defects I stopped, I am only 25 and have a 1 year old, I plan to have more kids and that just made me stop taking it.....
26 year old Female
Posted: 2008-11-12 08:38:21
iGuard.org Answer/Reply:
I went on it for the first time after my first child and as long as your system is free of the durg for 6 months prior to conception of your child everything will be fine. This is what we were told and we did for our second child and he is just a bright as can be!
Posted: 2009-01-01 20:34:41
Question/Comment:
After being on 100 mg of Topamax for a year & feeling like a walking zombie, I insisted my doctor lower the dose. I'm taking 25mg & am doing just about as well. I wish I'd known about the memory loss before starting the drug. The other side effect they don't tell you about is bone loss. I now have osteo penia so I'm on yet another drug for that. I tried stopping Topamax not long ago & my migraines came back. What to do??
62 year old Female
Posted: 2008-11-12 04:32:36
Answer/Reply:
My neurologist suggested taking L-Tyrosine (500mg-1000mg) every morning while I am on the Topamax. I tried the Topamax without the L-Tyrosine, and I was unbelievably exhausted. Since adding the L-Tyrosine to the regimine I feel great! I don't feel like I am experiencing any memory loss, or lethargy since adding it. You may want to give it a try!
37 year old Female
Posted: 2008-11-12 15:05:19
Answer/Reply:
Try taking your Topamax at night. It helps me sleep and I feel fine when I wake up. It has not caused any bone loss for me.I've been on it for several years.I take 100mg and it works great.
63 year old Female
Posted: 2008-11-20 16:56:57
Answer/Reply:
I agree with the above. I'm surprised none of the doctors prescribed it that way. My doctor told me right from the start to take it at night because of the drowsiness, and it says it on my bottle. My life has changed tremendously since my migraines are gone.
45 year old Female
Posted: 2008-12-07 17:24:49
Answer/Reply:
I'm confused on how you can only take topamax once a day? I can feel the effects start to wear off during the day. I hate taking it during the day and tried taking it only at night but my doctor said it has to be taken every 12 hours.
51 year old Female
Posted: 2009-02-03 17:45:24
iGuard.org Answer/Reply:
I've always taken it at night as my doctor prescribed. At first I was on 100mg, which made me a zombie, & now I'm only on 25mg. at bedtime.
Posted: 2009-02-24 17:19:13
Answer/Reply:
I was taking Topamax 300mg and the neurologist took me off of it and put me on Cymbalta 30mg. In just a few weeks I felt a 100 percent better. When I feel a migraine coming on I take Excedrin Migraine that has no side affects. The neurologist said it works just as good w/o the cost.
45 year old Female
Posted: 2008-12-17 10:00:23
iGuard.org Answer/Reply:
My husband is on 600mg of Topamax daily for migraine preventive. It doesn't affect him in any way. Didn't know about the memory loss. He already has memory loss, after a stroke. This is something i wil question his neurologist about on our next visit. My husband suffers from severe migraines.
Posted: 2009-02-20 14:35:42
Question/Comment:
For everyone who takes Topamax and suffers with the side effect of tingling.... my neurologist told my to take a CHEWABALE VITAMIN C SUPPLEMENT everyday. I have no tingling side effects anymore. If I forget to take the chewable Vit C, I know it, it get the tingles. Hope this helps, but ask your doctor first about the mgs of chewable Vit C that would be right for you. I take 500mg a day and I am on 100mg @ night of Topamax for Chronic Daily Migraines.
Good Luck Everyone, I know how you all feel.
41 year old Female
Posted: 2008-11-12 03:19:49
Question/Comment:
I wish i could be of more help to others but unfortunatly I have just begun treatment with Topamax myself and have a nagging question...besides the normal side effects of which I was told I would experiance by my cdoctor and others I knew who had taken the medication (i.e.: tingling and numbness, mild for me thankfully, in extremities, taste changes, drowsiness, etc,), I noticed in the drug info booklet that alcohol may intesnify drowsiness and then it later states not to use alcohol while using the medication? What are the side effects of alcohol consumption with this drug? Nothing calms the peripheral neurapathy like a nice vodka tonic before bed...my legs are killing me, the tonic water alone helps but a shot of vodka really helps.
28 year old Female
Posted: 2008-11-11 20:37:57
Answer/Reply:
It intensifies the alcohol 30, 50, maybe 100 percent depending on the person or even your body chemistry at the time as all alcohol does as in how much food is in your system and all. A few shots of somethng I use to be able to handle, made it seem as though I had 10 or 15. So it isn't worth the few shots any more with the benifits from the migraines!! I have been on Topamax for 4 years was on 400 mgs. 200 at night 200 in morning and just backed down to 100 each as insurance changed and the $635.00+ a month till deducable was met was killing me so I was working on getting off of it but just read about the help from Johnson and Johnson web site so I am praising the Lord and headed that way after this! Blessings, C in Florida
45 year old Female
Posted: 2008-12-18 03:01:20
Question/Comment:
I started taking Topamax a year ag for Migraines thatI have suffered from since childhood. I wa having side effects that no one explained to me, like altered taste, carbonated beverages had no carbonation and that stared immediatly. I had memory problems also that was really affecting my job performance. I felt i hd no choice but to stop taking it. I was taking 50mg once at night and I had SEVERE migraines 3 to 4 times a month. Taking the topamax I only had one a month and i was when I had my period. A friend ofmine said she had been taking Elavil for her migraines with no side effects andno migranes at allfor the 9 months she had been taking it. I though it was worth a try. It was much much cheaper (8.00) for a 3 month supply. but I have had one migraine after another. I am calling my Dr. today to get my script for Topamax again. I will live with te mild side effects I had, my heart goes out to all of you who have dibilitated by this. I do wonder why I started with 25mg twice a day for a week then 50mg once at night like the program says and some of you are 100mg twice a day? Could it be possible that you are taking too much?
37 year old Female
Posted: 2008-10-31 09:07:18
Answer/Reply:
I suffer from migraines, some very severe. A couple of years ago I was put on Inderal for it and it seemed to be just fine until all of a sudden this past March I started having them every other day. Severe pain, flashing lights, spots in my vision. Some days I would get lucky and not have pain, just the flashing lights, anyway they started me on Topamax. It has been an interesting event. I stay at 25 mg 2x a day, they tried to up it to 50 mg 2x a day and I went into a complete stupier, could not remember things, focus, all I wanted to do was cry. I still have migraines, not near as often, have lost 30lbs....yahoo! Tingling hands, feet, sometimes my memory is not as sharp.
40 year old Female
Posted: 2008-11-03 12:47:08
iGuard.org Answer/Reply:
I have miagrains that I have controlled with other methods since I was age 13, but I was put on topamax about 7 weeks ago to help with weight loss. I only have about 25 to 30 pounds to lose. I have only lost about 2 pounds. I also went up to 100mg, but couldn't handle the side effects. Mouth tingling, very emotional, acid reflux, etc. I have now backed down to 50mg with the intent of going off of topamax and my doctor has said possibly going on Meridia. My question is, has it taken you since March to lose the 30 pounds and was that all you had to lose? I know they say weight loss is a side effect, but how quickly does it work and is it worth the side effects. I do not feel like my appetite has been suppressed. Maybe at first, but not now. Thanks!
Posted: 2008-11-03 18:49:07
Answer/Reply:
I started Topamax for Migrans about two months now. I started with 25mg once a day for a week then went to twice a day for a week until i got to 50mg twice a day so i have been on 100
mg a day for almost a month. I seem to be doing good with my head achs i have only had a few since i started the Topamax so i am happy with that. but every thing i have read and the Dr. tells me, along with friends that are on this that they have lost weight. when did you start to see
the weight come off did you have to be on it for a few months? So far I drink water like I can't get enough and i hardly eat but I am only maintaining my weight not really dropping it like people said i would!!
38 year old Female
Posted: 2008-11-11 13:18:55
Answer/Reply:
I have been on Topamax to prevent migraines for over a year (75 mg at night) with great results. I haven't noticed weight loss, but have definitely experienced thirst. My neurologist told me to drink at least 8 glasses of water a day to prevent kidney stones, which is a common side effect. I have no problem doing that since I'm so thirsty. But kidney stones is one side effect I haven't noticed anyone mention or say that their doctor has mentioned. Interesting.
53 year old Female
Posted: 2008-11-20 00:22:56
iGuard.org Answer/Reply:
it is important to start out on small doses likew 25 mg then increase as needed to control what ever is your problem. topamax has been used for migraines, seizure,and weight loss. it does have some side effects that should be monitored like electrolyte levels.
Posted: 2008-11-11 09:33:24
iGuard.org Answer/Reply:
I have been taking Topamax for almost four years for migraines. I take 50mg twice a day. This medication has been a gift to me. I was starting to end up in the ER monthly for morphine injections to get rid of my headaches as the medications I was taking failed to work on my headaches. I still get occasional headaches but the combination of Topamax and Zomig control them so I can easily function. I had the initial confusion as I adjusted to the medication for the first month. It only happened when the dosage increase happened in the morning. I also was incredibly tired and had little appetite during that time. However that also ended after the first month. I exercise frequently and have plenty of energy to meet my family, volunteer and part-time job obligations.
Posted: 2008-11-19 11:04:30
Question/Comment:
i have been on topamax (100mg) twice a day for about 2 years. no more migraines, only 1 in the past 2 years. it is the best med i have ever taken for migraine prevention. everyone says it causes weight loss, but it has done the opposite for me. i have gained 25+ lbs taking topamax. i also have severe tingling in my arns and hands. i am always tired and constantly need sleep. i can nap for 3hours, get up and go straight to bed and sleep for 9hours and still have a hard time getting up in the morning. i go to work for 8hours (i do not do any physical labor) and come home and feel so sleepy that i can lay down for a nap, and sleep for 3 more hours get up and go to bed for 9hours and so on and on and on, every single day. i feel like it may be causing my fatigue. has anybody else had this experience? my doctor tells me to just take a 30 min power nap and get up and that will help, but he doesnt understand I CANT just sleep for 30 min, even if i set an alarm or have some one physicall try to get me up, i CAN NOT wake up, i am just that tired and sleepy.
missy
33/f
5 year old Male
Posted: 2008-10-30 08:38:08
iGuard.org Answer/Reply:
36 year old female I have the same thing every morning I feel like I got beat with a bat all night instead of sleeping. If I nap it isn't a 20 or 30 minute nap it is as you said like 2 or 3 hours and then I feel worse . I have lost half of the hair on my head in the past 5 months even though 3 months ago my neuro assured me it wasn't the topomax. I now after several blood tests and dr visits know better . I am in the process of trying to wean off from 200 mg a day off of the stuff. if anyone knows how long it takes to stop the hair loss after I'm off it i'd greatly appreciate it.I'm a hairstylist so I can't be bald. good luck figuring out if its worth staying on it.
Posted: 2008-11-05 16:29:50
Answer/Reply:
O/ya I know what you mean I have the same problem when I only take 50mg it is soooo much better! I still take other med. for migraines (Maxalt) but I only need to take it about once a month around my period~
34 year old Female
Posted: 2008-11-18 18:45:24
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