Guest guest Posted March 6, 2000 Report Share Posted March 6, 2000 In a message dated 3/5/00 5:57:26 PM Eastern Standard Time, onelist writes: << I have had fairly good luck on neurotin but I am thinking of switching to Topamax. Does anyone here have any experience with this drug. Steve >> Steve, I took 15 mg of Topamax once. It just made me sleepy. I have also tried neurontin. you get about the same 'drunk' type effect from both, but the topamax made me much sleepier. (To me it isn't a pleasant 'drunk' feeling). I can see that topamax is a good anti-seizure med, but I think you will find it makes you too drowsy. You could use it for sleep, however. Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 Has anybody heard, or used, this med? I just went to the pain clinic today, and they want me to take it. I am going to do a search about the side effects, but was wondering if anyone had any first hand experience with this... They told me that a side effect is weight loss, and I am very heavy (but I think that my new way of training myself to eat healthier is good..) Lyn _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 In a message dated 2/9/2001 11:09:13 PM Eastern Standard Time, paniangelica@... writes: Lynn I I only know of its use is for depression,mania, and post traumatic stress disorder.....not for pain(see below) J Topamax Click here: Topiramate (Topamax), Mood Disorders and PTSD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2001 Report Share Posted February 10, 2001 Well, it's amazing. I was up all last nite searching this. Yes, I did find out it is used for BIPOLAR diagnosis!! Can you imagine? What ELSE can I expect from these drs?? Hey, I did find out some interesting stuff.... ever wonder why a clinic or hosp insists on prescribing certain drugs? Well.... I did find out that Ortho-McNeil (they make Topamax) did fund some studies or study (I was up time the early hrs searching this... got a bug neath my bonnet on this one). I couldn't get the connection with the pain clinic itself, but I wouldn't be surprised. Wonder why I just don't trust these guys! Lyn =============== >In a message dated 2/9/2001 11:09:13 PM Eastern Standard Time, >paniangelica@... writes: >Lynn I > I only know of its use is for depression,mania, and post traumatic stress >disorder.....not for pain(see below) > >J > > > > ><A HREF= " http://www.psycom.net/depression.central.topiramate.html " >Click >here: Topiramate (Topamax), Mood Disorders and PTSD.</A> _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 Topamax is not approved by the FDA as a monotherapy drug, but it can be used that way. I am now taking Topamax and I feel like I have gotten my life back. I used to take Depakote. I constantly battled with weight gain that was out of my control. Since the topamax, I have now lost some of the weight I gained over the years on depakote without even trying. This however, has proven to be a problem for some people who loose too much weight on the drug. You have to make sure that you drink alot of water while taking it. Kidney stones is a known side effect. I have not had any problem in this area however. Also, it does occasionally cause pins and needles in the feet. I've noticed that if I'm really good at maintaining the regular water intake and get regular exercise, that this side effect is just about non-existant. The docs warned that it can cause mental slowing in some patients, but that is usually seen when you are first taking the drug. I had no problems with this. Jeanne *whose seizures are controlled through Topamax monotherapy and is now driving again after 1 whole year of hell!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 jeashe Interestingly, I am picking this up for ME, not today since I am on the stealth virus protocol, this seems to have some temporal lobe mood elevator? Kathy [ ] re:topamax Topamax is not approved by the FDA as a monotherapy drug, but it can be used that way. I am now taking Topamax and I feel like I have gotten my life back. I used to take Depakote. I constantly battled with weight gain that was out of my control. Since the topamax, I have now lost some of the weight I gained over the years on depakote without even trying. This however, has proven to be a problem for some people who loose too much weight on the drug. You have to make sure that you drink alot of water while taking it. Kidney stones is a known side effect. I have not had any problem in this area however. Also, it does occasionally cause pins and needles in the feet. I've noticed that if I'm really good at maintaining the regular water intake and get regular exercise, that this side effect is just about non-existant. The docs warned that it can cause mental slowing in some patients, but that is usually seen when you are first taking the drug. I had no problems with this. Jeanne *whose seizures are controlled through Topamax monotherapy and is now driving again after 1 whole year of hell!!!! _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2001 Report Share Posted July 15, 2001 >>>this seems to have some temporal lobe mood elevator? Kathy, I have not seen any mood changes since I have been taking topamax. In fact, I can say I now can look back and say that I believe depakote kept me in a constant depressed state. Not so depressed that I couldn't function, but definately a difference. Although I feel no mood differences, I do know that there are a few folks out there taking topamax as a partial mood stabilizer. However, I do not know the results of this. I do have one client (non-verbal) that was taken off of topamax because her behaviors became extreme while taking the drug. It is impossible to know if this is becuase it was affecting her mood or perhaps she was feeling those pins and needles and couldn't stand it or was even feeling the cognitive effects and couldn't stand it. It's hard to know when they cannot tell you. JEanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 Christy, I also got very depressed on Topamax, and I have read that it has been the cause of suicide as a result of sever depression. Also, the headaches would just not go away and yes, I felt stupid all the time as I just couldn't think. I went days without talking to anyone just because I didn't have the stamina to think or follow through with a conversation. Not good side effects. Rather try something else if you have to. Regards Helena > [ ] Topamax > > I currently take 1500 mg of Depakote a day. In December, my neuro > also started me on Topamax. We started 25 mg a day and increased it > slowly (25 a day for the first week, 50 a day for the second week, > ect.). I didn't do well with it at all. The Depakote is bad > enough. On it (Depakote), I have severe fatigue, dizziness, hand > tremors, hair loss and weight gain. On the Topamax, I had even worse > fatique and REALLY bad dizziness and I just felt like I couldn't > think. I also have headaches and my depression has gotten worse > (don't know if that is related to the medicine or not). I had only > gotten up to 100 mg a day and just couldn't handle it anymore. I > called neuro about a week and a half ago and he said for me to cut > back down to 50 mg a day. I did and it did help the side effects, > but not enough. I'm stopping the Topamax whether the neuro likes it > or not. I'm not going to feel like this. I'm still on the Depakote so > I'm not worried about not having enough medicine in my system. > > I hate the side effects for the Depakote too, but at least I'm used > to them a little and can handle them a little better. Man, this E > medicine sucks. > > Christy > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2003 Report Share Posted May 4, 2003 In a message dated 5/4/2003 5:01:24 PM Central Daylight Time, mjs93311@... writes: > I forgot to say I have never heard of using it for weight loss, but we often > use drugs in an " off label " way. Eventually the off label indication > becomes quite normal. I would have to research it a little bit before I > would be willing to prescribe it for wt loss, however. Marta > I knew about it for wt loss because it is prescribed for Pseudo tumor(One of those weird things that happen only to me!) for severe headaches. It mentioned in a few articles I read that people who have PTC also are heavier and one of the benefits are Wt. loss. Then I saw it on a dateline as a possible new wt loss drug. I had hoped Dr H would prescribe it to me pre op as a treatment for my headaches related to PTC. But for a Plateau?? in Bama http://hometown.aol.com/mdl1031/myhomepage/profile.html Surgery- RNY to DS revision on12/6 -377.5 12/17 - 346.5 ( minus 31lbs) 01/15- 338.1 (minus 39.1lbs) 02/12-330.0 (minus 47.5 lbs) 04/06- 324.3 (minus 53.2 lbs) 05/02- 311 (minus 66.5 lbs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2003 Report Share Posted May 4, 2003 In a message dated 5/4/2003 7:30:56 PM Central Daylight Time, s4052475@... writes: > What is Topamax? How does it work? Is it a drug normally prescribed for > something else? > > Interesting.... > > Maybe someone should ask Dr K's opinion on this... > > Kristy > > Maybe....Not me, I can't find his e-mail addy now that he has changed the web site! in Bama http://hometown.aol.com/mdl1031/myhomepage/profile.html Surgery- RNY to DS revision on12/6 -377.5 12/17 - 346.5 ( minus 31lbs) 01/15- 338.1 (minus 39.1lbs) 02/12-330.0 (minus 47.5 lbs) 04/06- 324.3 (minus 53.2 lbs) 05/02- 311 (minus 66.5 lbs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2003 Report Share Posted July 13, 2003 In a message dated 7/12/03 10:41:01 PM, airlinerg@... writes: << Does anybody know about Topamax? How long do I have to be on it and at what dose to notice any improvement? Any side effects from Topamax? --------------------------------------------------------------------- Since it has been mentioned here, my psychiatrist recommended that I try Topamax. I have hyperplasia, fatigue, dysthymia, fibromyalgia, sleep apnea and I am overweight about 30 pounds. I weigh 180 and I should be 150 or less, since I am 5'6 " . I cannot loose weight. They say that Topamax helps with atypical depression and weight loss. By the way, my other meds are again: MEDICATIONS: Morning: 1. Norvasc (amlipodine) 5 mg. 2. Midamor (amiloride) 5 mg. 3. multiple vitamin (Theragram) 4. vitamin e (400 iu) 5. chromium picolinate (200 mcg.) 6. coenzyme Q10 (50 mg.) 7. vitamin C (500 mg) As needed for fatigue: Provigil (modafinil) 100 mg. Strattera (atomoxetine) 25 mg. Evening: 1. Cardura (doxysosin) 1 mg. 2. Lipitor (atorvastatin) 5 mg. 3. vitamin C (500 mg.) Please reply here, and to my email address airlinerg @ rulestheweb.com Thanks. >> Strongly recommend the DASH diet 14 day challange and I expect you can lower weight and BP and decrease meds. Work with your health team and measure BP daily. The full effect is there in 2 weeks. CE Grim MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2003 Report Share Posted July 13, 2003 In a message dated 7/12/03 10:41:01 PM, airlinerg@... writes: << Does anybody know about Topamax? How long do I have to be on it and at what dose to notice any improvement? Any side effects from Topamax? --------------------------------------------------------------------- Since it has been mentioned here, my psychiatrist recommended that I try Topamax. I have hyperplasia, fatigue, dysthymia, fibromyalgia, sleep apnea and I am overweight about 30 pounds. I weigh 180 and I should be 150 or less, since I am 5'6 " . I cannot loose weight. They say that Topamax helps with atypical depression and weight loss. By the way, my other meds are again: MEDICATIONS: Morning: 1. Norvasc (amlipodine) 5 mg. 2. Midamor (amiloride) 5 mg. 3. multiple vitamin (Theragram) 4. vitamin e (400 iu) 5. chromium picolinate (200 mcg.) 6. coenzyme Q10 (50 mg.) 7. vitamin C (500 mg) As needed for fatigue: Provigil (modafinil) 100 mg. Strattera (atomoxetine) 25 mg. Evening: 1. Cardura (doxysosin) 1 mg. 2. Lipitor (atorvastatin) 5 mg. 3. vitamin C (500 mg.) Please reply here, and to my email address airlinerg @ rulestheweb.com Thanks. >> Strongly recommend the DASH diet 14 day challange and I expect you can lower weight and BP and decrease meds. Work with your health team and measure BP daily. The full effect is there in 2 weeks. CE Grim MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 Hi Sandi, Who prescribed the Topamax? The pdoc? I asked about if for weight loss and my pdoc wouldn't prescribe it just for that. > No > Ok.. I take topamax to lose weight. > I take Wellbutrin for depression. By taking the Wellbutrin it also gave me back my sexual drive and energy. It just so happens that I have not gained any weight taking it. > I also take Lexapro for depression. It just so happens > that I have not gained any weight taking it. > > Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 In a message dated 01/11/2004 10:34:56 Central Standard Time, judyanthony@... writes: http://www.fda.gov/medwatch/SAFETY/2003/safety03.htm#topamax2 Help! Judy, what does that mean? I'm not questionning that it does, I don't understand what it means. Does anyone w/understanding of medical jargon know? I plan to call my neurologist and ask. I think doctors should explain this before they prescribe or if they receive this kind of information, they should inform patients. I have no idea what impact this has on a person's health or interaction w/other drugs, and of course I want to know! Did your doctor explain it to you? If so, please share what he told you. If not, I'll call my neurologist tomorrow and see what he has to say and share that with the list. Jennie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 It would be nice if these warnings were written in plain language that regular people could understand. , do you understand this medical terminology? Or Debbie or other medical personnel out there? Meanwhile, I'm taking 300 mg. a day. I'm not going to worry about it, but I am going to call tomorrow hoping I'll get a call back before the day is over. Let y'all know what I find out. Jennie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Hi, y'all: Just my " feisty " $.02. If you have ANY questions or concerns about a drug that you're taking, you don't need to wait until your next appointment! You can call your pharmacy and talk to a real pharmacist (not the pharmacy techs) who are highly educated and informed about drug reactions and warnings, and who have access to this kind of information and can understand it. Or, you can call your doctor's office and ask to speak to the doctor's nurse, expressing your concerns and requesting a call-back. Or you can send a fax to your doctor's office, addressed to " Dr. Doe/Medical Staff " with your questions, and follow up, and they'll have to get back to you with answers. But if you have concerns that you may be susceptible to a reaction to a medication you're taking, you can get these concerns addressed right away. Specifically about Topamax. Those kinds of warnings aren't intended for mortals to read. However, relatively recent laws require that drug companies provide user-friendly descriptions of how the drug works, who shouldn't take it, what it might interfere with, etc. I think the " friendly " label is at WebMD at http://my.webmd.com/content/drugs/4/4046_2205.htm?lastselectedguid= {5FE84E90-BC77-4056-A91C-9531713CA348}. (If that URL fails, just go to webmd and search on topamax; the label info is on the second or third page of results.) But please, if you're worried, call your doctor's office or pharmacist. The actual pharmacist actually knows stuff, especially if you usually use the same pharmacy and they have a complete list of all the meds you're taking. Again, just my $.02, I'm not a doctor, I'm just a jerk, etc. Elissa > I don't undertand it either. That's why I'm going to ask the doc, but I won't see him again for about three weeks. > Re: Topamax > > > In a message dated 01/11/2004 10:34:56 Central Standard Time, > judyanthony@c... writes: > http://www.fda.gov/medwatch/SAFETY/2003/safety03.htm#topamax2 > Help! Judy, what does that mean? I'm not questionning that it does, I don't > understand what it means. Does anyone w/understanding of medical jargon know? I > plan to call my neurologist and ask. I think doctors should explain this > before they prescribe or if they receive this kind of information, they should > inform patients. I have no idea what impact this has on a person's health or > interaction w/other drugs, and of course I want to know! Did your doctor explain > it to you? If so, please share what he told you. If not, I'll call my > neurologist tomorrow and see what he has to say and share that with the list. Jennie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Good point. But stop calling yourself names. Also, a few pharmacists and docs have email. Of course a fax is easier to prove, I guess. Best, Re: Topamax > > > In a message dated 01/11/2004 10:34:56 Central Standard Time, > judyanthony@c... writes: > http://www.fda.gov/medwatch/SAFETY/2003/safety03.htm#topamax2 > Help! Judy, what does that mean? I'm not questionning that it does, I don't > understand what it means. Does anyone w/understanding of medical jargon know? I > plan to call my neurologist and ask. I think doctors should explain this > before they prescribe or if they receive this kind of information, they should > inform patients. I have no idea what impact this has on a person's health or > interaction w/other drugs, and of course I want to know! Did your doctor explain > it to you? If so, please share what he told you. If not, I'll call my > neurologist tomorrow and see what he has to say and share that with the list. Jennie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Elissa, your absolutely right about calling the phamacist or doc. I, personally, had no need to do that since I'm not even taking the drug yet. Also, my cousin has her Ph.D. in pharmocology (from 's Hopkins...and it was interesting to hear her take on that hospital) and my good friend is a rheumatologist at FDA. Although my friend can't share the confidential information from FDA, so much of the medical stuff we talk about is very interesting. I could talk to her all day about my medical issues, but I think the poor woman gets bombarded with medical questions every time she's out socially. For every five questions I ask her, I really want to ask a hundred more. It takes all my effort to hold myself back :-) She's given me lots to think about with medications... not necesssarily bad, just things that I wouldn't have considered on my own, and actually much of what she tells me is so over my head that I can't digest it. I was hoping by sending my first email about Topomax that I was providing one more site for others to consider and, if needed, the info. can be explored with the docs to find out if there's anything to be concerned. As reliant as I am on certain meds, and so glad to have availablity to them, I certainly have a healthy respect for the (known and unknown)long and short term side effects. Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 DEAR PATTY,I KOW HOW YOU FEEL I HAD MIGRAINES FOR OVER 13 YEARS. I TAKE HERBS SUCH AS LAVENDER,LINDEN,VALERIAN,VERVAIN AND PEPPERMINT OIL. MASSGE PEPERMINT OIL INTO YOUR TEMPLES ROSEMARY IS ANOTHER GREAT HERB AS WELL AS SKULLCAP AND DRINK PEPPERMINT TEA. SINCE I'VE BEEN ON HERBS THE MIGRAINES HAVE STOPPED.I ALSO HAVE SEIZURES LAST YEAR ALONE I HAD 700 SEIZURES SINCE BEING ON SUNRIDER HERBAL FOODS, I'VE ONLY HAD 7 IN THE LAST YEAR.I WENT OVE 10 MONTHS WITHOUT A SEIZURE THEN I RAN OUT OF SOME SUNRIDER THEN I HAD 5 SEIZURE ON MAY 5TH AND 2 ON THE 6TH AND NO MORE SINCE GETTING MY SUNRIDER. DEAR PATTY, I PRAY FOR YOU TAKE CARE WITH ALL OF GOD'S LOVE,MARK <wynonna1@...> wrote: I have had Migraines for nearly 5 years I am 36 years old and always equated them with my period. Well for the last year I have been having them more and more often and finally started having seizures with them and was diagnosed with Myoclonic Seizures almost 4 weeks ago. I'm taking 125 mg of Topamax a day and I'm wondering if anyone else is taking this drug and what your experience is with it. Side effects etc. Thanks. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2005 Report Share Posted April 6, 2005 , We are not on enzymes yet so I am not sure if this will help but as for Topamax in general , my 14 year old takes it for his migraines. He does not currently have seizures but has had them in the past. It has really made a big difference for him. My mom has severe migraines and requires shots, she told me recently that her Dr. mentioned that migraines are like mini seizures in the brain even if they don't register on the EEG. I realize that this is not your son's situation but wanted to let you know that we have been happy with the medication. We currently have him on a low dose (25mg) we did have to have it up to 50mg to get the migraines under control, they were pretty severe. If the medication did not help, I was going to go to his neurologist, fortunately they did help. I hope this helps you a bit, there did not appear to be any side effects, all though I know someone who has alot of seizures and is on a high dose of Topamax and does not care for it. My son says it helps him alot. We have decided to keep him on a low dose to keep the migraines under control. Seizures are know to reappear during adolescence. Warmest wishes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 I've not used it because we didn't have any abnormal activity. This is really a question for your neuro, but I can tell you what I suspect s/he will say: that although there were no " true " seizures, that he suspects your son is having some sort of seizure activity anyway. These seizures can actually damage the brain, and, depending on where they are manifesting, seriously affect language. Because it's so difficult to pin down seizure activity, the neuro probably wants to see if he will benefit from the drug intervention - and I've known children who have REALLY benefitted from anti-seizure meds when seizures were suspected but difficult to confirm despite several EEGs. Speak to him/her about the pros and cons of trying topomax. Could be that the side effects are temporary or so rare that it can be weighed differently. And, if the doc dismisses you or won't discuss this with you, then you don't have a good, partnered relationship with him/her and - if you have options - you might want to go elsewhere. I find pharmacists to be the best at giving info about side effects, as well. Not to dismiss the doc's opinion, but to seek another facet to it. Second doc opinions are always a good thing, too. Let us know - Marina > > > Anyone here used topamax on a child with speech and language disorder? > It is an anti-seizure medication suggested by my son's neurologist due > to " abnormal " EEG activity (but no specific seizures noted during > EEG). One of the potential side effects of the drug is memory, > attention and speech and language issues. I cannot understand why > that would be helpful for a child whose primary developmental issue is > speech and language. Also has anyone used with success EFAs > concurrently with any anti-seizure medication? Did speech improve? > > Thanks. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 Hi- My son takes keppra for his seizures. We have the opposite of you - clinical seizures but normal eegs. There is very limited research as to whether medicating for an abnormal eeg will help development. There is a Dr. Binnie in England who has studied this - you may want to google his research. It is quite controversial to medicate for no outward seizures. Many doctors will take the " well, it can't hurt " approach, and that may very well be true. But, as parents, we owe it to our kids to do the kind of research you are doing right now. As for the side effects of topamax, why don't you go on the epilepsy foundation's ecommunities and post your question? Believe me, those people know far more about seizure meds than anyone here... and probably your pharmacist and neurologist, too. They are a very helpful group. As for EFAs, my son has taken them for a couple of years and it has not effected his seizure threshold at all. In fact, there is current research showing the benefits of DHA as realted to seizure disorders (another thing to google). After a couple of years of using ProEFA and Pro EPA, we are switching to ProDHA and ProEPA due to what we believe are his needs for greater DHA. So far, so good. Good Luck with your decision, Eau , WI > > > > > > Anyone here used topamax on a child with speech and language > disorder? > > It is an anti-seizure medication suggested by my son's neurologist > due > > to " abnormal " EEG activity (but no specific seizures noted during > > EEG). One of the potential side effects of the drug is memory, > > attention and speech and language issues. I cannot understand why > > that would be helpful for a child whose primary developmental issue > is > > speech and language. Also has anyone used with success EFAs > > concurrently with any anti-seizure medication? Did speech improve? > > > > Thanks. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 > > My son's dr just put him on Topamax in addition to his Tegretol. Does > anyone have any experience with Topamax. > Thanks > Tonia > ya I do and it was not a very good one I was very moody and I almost took someone head off. I became violent to the point where people did'nt want to be around me. I guess it work for some people but not for me. Just watch him and be there for him . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2007 Report Share Posted May 19, 2007 Tonia, We have tried Topamax with my 4 1/2 y/o daughter. This was our 6th drug and by far the worst. Now, as you know " all kids are different. " But within weeks of starting this drug my daughter lost the ability to talk and walk. She suffers from ataxia, a severe side effect of the drug. It also increased her seizures dramatically. We have recently weaned the Topamax and switched her to Zonegran (very similar). She still isn't able to walk or talk and has suffered major set backs due to all the drugs. They have done so much more harm than good. She now has about 100 myoclonics a day and a tonic clonic about every other day. I'm not saying not to try it, though I wish we never did. We are going next month to start the keto diet, and hopefully will be able to wean most meds. Good luck, and be sure to understand the possible side effects and look out for them. Tell the dr. immediately if you suspect side effects, such as ataxia or increased seizures. Miranda P.S. I would also look into some vitamin supplements to help your son. Try doing a search for b vitamins, omegas, DMG, calcium, carnosine and there are several others, if you have not already tried. Again, good luck. " Tonia B. " <tonia_b_90806@...> wrote: My son's dr just put him on Topamax in addition to his Tegretol. Does anyone have any experience with Topamax. Thanks Tonia --------------------------------- Give spam the boot. Take control with tough spam protection in the all-new Beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2007 Report Share Posted May 19, 2007 Miranda and Tonia, One novel but very experimental approach is to use rTMS or repetitive transcranial magnetic stimulation. It is a non-invasive approach. A coil typically shaped like the figure 8 is used outside but in close proximity to the brain. Electrical current passes through the coil only resulting in the coil generating a fairly strong magnetic field. The magnetic field in turn then induces eddy currents inside the brain. No one really know what happens then. It has been used with good degree of successes to treat severe depression and post-traumatic stress disorder or PTSD. (There is no drugs to treat PTSD. Drugs used typically are to treat depression, panic attack, and insomnia associated with PTSD but not PTSD itself.) There is a possibility that the eddy current inside the brain induces the generation of certain inhibitory neurotransmitters. For example, my investigation suggested that Taurine could have been generated. Taurine has some success in treating seizures but its effect is inconsistent. One of the members of this group has some success but for many Taurine does not help. One possibility could be the blood brain barrier (BBB) - Taurine could not penetrate the BBB for many. rTMS may work because Taurine could possibly be generated internally inside the brain and thus bypasses the BBB. The following is a recent article in using rTMS on myoclonic epilepsy but again this is very experimental. I believe that rTMS is a very powerful and potentially great technology. One problem is the coil is too big and thus excitation cannot be localized. Excitation in unwanted area could possibly induce negative effect in certain cases. However, I believe this problem could be solved in the near future since laser based microcoils have been around for some time. The bottom line is that early results in using rTMS on hard to treat problems such as PTSD is very encouraging. You may want to discuss with your neurologist about this avenue for uncontrollable seizures since it is non-invasive. However, again this technology is still in its infancy. CY Clin Neurophysiol. 2006 Jun;117(6):1217-27. Epub 2006 Apr 27. Homeostatic effects of plasma valproate levels on corticospinal excitability changes induced by 1Hz rTMS in patients with juvenile myoclonic epilepsy. Fregni F, Boggio PS, Valle AC, Otachi P, Thut G, Rigonatti SP, Marcolin MA, Fecteau S, Pascual-Leone A, Fiore L, Valente K. Center for Noninvasive Brain Stimulation, Beth Israel Deaconess Medical Center, Harvard Medical School, 330 Brookline Ave., KS 452, Boston, MA 02215, USA. ffregni@... OBJECTIVE: The preliminary results of noninvasive brain stimulation for epilepsy treatment have been encouraging, but mixed. Two important factors may contribute to this heterogeneity: the altered brain physiology of patients with epilepsy and the variable presence of antiepileptic drugs. Therefore, we aimed to study the effects of 1 Hz rTMS on corticospinal excitability in patients with juvenile myoclonic epilepsy (JME) in two different conditions: low- or high-plasma valproate levels. METHODS: Fifteen patients with JME and 12 age-matched healthy subjects participated in this study. Corticospinal excitability before and after 1 Hz rTMS was assessed in JME patients with low- and high-plasma valproate levels; and these results were compared with those in healthy subjects. RESULTS: In patients with chronic use of valproate and low-plasma concentrations, 1 Hz rTMS had a similar significant inhibitory effect on corticospinal excitability as in healthy subjects. However, in the same patients when the serum valproate concentration was high, 1 Hz rTMS increased the corticospinal excitability significantly. In addition, there was a significant positive correlation between plasma valproate levels and the motor threshold changes after 1 Hz rTMS. CONCLUSIONS: Our findings can be accounted for by mechanisms of homeostatic plasticity and illustrate the dependency of the modulatory effects of rTMS on the physiologic state of the targeted brain cortex. SIGNIFICANCE: The therapeutic use of rTMS in epilepsy should take into consideration the interaction between rTMS and drugs that change cortical excitability. Re: [ ] Topamax Tonia, We have tried Topamax with my 4 1/2 y/o daughter. This was our 6th drug and by far the worst. Now, as you know " all kids are different. " But within weeks of starting this drug my daughter lost the ability to talk and walk. She suffers from ataxia, a severe side effect of the drug. It also increased her seizures dramatically. We have recently weaned the Topamax and switched her to Zonegran (very similar). She still isn't able to walk or talk and has suffered major set backs due to all the drugs. They have done so much more harm than good. She now has about 100 myoclonics a day and a tonic clonic about every other day. I'm not saying not to try it, though I wish we never did. We are going next month to start the keto diet, and hopefully will be able to wean most meds. Good luck, and be sure to understand the possible side effects and look out for them. Tell the dr. immediately if you suspect side effects, such as ataxia or increased seizures. Miranda P.S. I would also look into some vitamin supplements to help your son. Try doing a search for b vitamins, omegas, DMG, calcium, carnosine and there are several others, if you have not already tried. Again, good luck. " Tonia B. " <tonia_b_90806> wrote: My son's dr just put him on Topamax in addition to his Tegretol. Does anyone have any experience with Topamax. Thanks Tonia ------------ --------- --------- --- Give spam the boot. 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