December 23th
2008
2:58 PM
I have been on 50 mg topiramate for a while now. It is part of a 5 drug mix used to address bipolar, anxiety and adult residual add. I take the topamax in one dose at night. When I first started it, I DID try to titrate up to at least 200 mg, but never made it past 75 mg. I took it in the morning, and, after about a week and a half on 75 mg, somnolence kicked in big-time and I was a zombie.
My Dr. and I kicked it back to 50, and moved it from a daytime drug to a night-time drug, and I have not really have problems since. It certainly still seems to have some mood stabilizing benefits for me, even at the relatively low dose I am taking. It also has helped with the awful headaches that I used to get far more frequently than I do now. I do not think that I ever received a weight benefit from it, but it seems that most people generally do not at this dose. Late last year, I had to switch to a different physician. Sadly, the new practicioner is no replacement for the former.
I have gained weight over the past few years for a variety of reasons. A somewhat sedentary lifestyle, social and emotional eating, too frequent consumption of caloric alcohol, (once a week or so,) as well as weight-gain contributory atypical anti-psychotic or mood stabilizing drugs have all helped put me in an unpleasant location on the BMI chart.
I have been enrolled in a hospital-associated, medically-monitered weight-loss program for several months and have een successfully losing weight. My new psychiatrist felt that an increase in topamax dose might be beneficial. I am going to attempt moving up to 100 mg, provided that I feel the change is warranted, and that the side effects do not kick in as before. The aforementioned practitioner has a tendency to be pixelated with respect to the approach towards a patient. This person does not seem to put much effort into reading, absorbing, integrating and using patient file information very well. For instance, this physician would miss the importance of the fact that topamax can cause an acidosis condition, and that the hospital diet typically intentionally puts patients on a diet that causes ketosis. These two conditions together would be unpleasant, to say the least. The doctor never even asked what type of diet I was on....
This is not the first time such an oversight has been made on the doctor's part, and it is my own educational background and awareness that has kept me from being the victim of the doctor's inattention and carelessness, not to mention probable nasty outcomes had I followed the instruction without question.
I am fortunate to be educated about this stuff, and so I do not have to rely on the practitioner's judgment alone. I am shopping for a new one, actually.
As it is, I am not on the hospital's most common diet, the ketosis-inducing one, and so I am not worried much about the potential acidosis due to topamax.
( I am not on the ketosis diet because I am aware of the problem such a diet can cause for bipolar disorder management, independent of any drug interactions. I read about this, consulted with the dieticians and weight-loss center physician, and chose a non-ketosis diet. I have been losing weight at a regular pace. the speed of loss is slower than with a ketosis diet, but safer for me. All it demands is better behavior on my part, but that is life.)
But I want to communicate a few things here.
First, I see that many people suffer not only from adverse effects, but also from arguably adverse treatment by physicians who either are not aware of a drug's information, are marginally aware of it, are not aware of their patient, or some combination of the above, or perhaps they just don't care.
There is also a clear tendency for many docs to balk when the patient's experience doesn't fit the prescriber's leaflet, resulting in dismissal of the patient's concerns and experiences, and may lead to arguably unnecessary tests and diagnostics rather than discontinuation of an offending drug.
Be aware that such treatment is indicative of a problem with your doctor, and the relationship between the two of you. Don't allow yourself to be tossed off that way, especially with no resolution to your problem; get a second opinion. Second, topamax is a specialty drug, and should be prescribed by, and treatment should be monitored by, a specialist. namely, this specialist should be a psychiatrist or neurologist, depending on what you ar taking the topamax for. Even if topamax had been prescribed for you for migraines or weight loss, the doctors most likely to be most educated about its main and adverse effects are psychiatrists and neurologists. There are a very few internal medicine or family practice docs who might be "with it" enough to be following the literature on this type of medication. A sub-point to this is a suggestion that education and information can only help you, and you should seek it out. Don't just read about a diagnosis, or about adverse effects, though. You'll run the risk of getting "medical students' disease", finding that your symptoms seem to match the disease descriptions for all manner of ailments. A general education is actually more useful. Text books can be a great help. Where you find something in a text is a bit advanced for you, try a more elementary text. Texts are available at libraries, so you don't have to buy them all. But reading up on psychology, understanding a little about metabolism, having some familiarity with medical terms, such things can save you from the results of a doctor's distraction, disinterest or disdain. It can also be immensely comforting just to understand how one's body works, and how drugs work within it, when one must face a disease such as Bipolar, Depression, Anxiety, Diabetes, etc. College intro level classes are thorough enough to demonstrate how a 25 mg pill can cause such disruption or such relief in a person's life. Eating certain things, and at certain times, sleeping well or poorly, ambient temperature, hygiene, reading habits, ALL of these things can have a profound effect on a person's day-to-day life. All of those factors, and more, can effect the physiology of an individual. It is good to know a little about how the system works, the better to maintain it. Some pop-sci books are pretty good, too. "You: The Owner's Manual" for instance. But some may read such books and find themselves wanting more information, and this is where any number of college texts about anatomy and psysiology, neuro-physiology, psychology and physiology, metabolism, diet and nutrition, genetics, etc. will come in handy. For those with insatiable curiosity and a deep desire to understand and manage a given disease or condition, there are usually medical texts available specifically covering THAT condition. For instance, those with Bipolar might wish to read at least parts of the text Manic Depressive Illness:Biolar Disorders and Recurrent Depression by F. Goodwin and K. Jamison. This text covers most of the meds those with bipolar would be interested in, it surveys the research done to date, what is known about combo therapies, adverse effects, including hair loss and weight gain, it covers patient experiences, as well as physician descriptions. One of the co-authors, for those who do not recognize the name, is not only a top researcher of affective disorders, but also suffers from manic-depression. The text is almost a good a friend as a patient could have, especially if your own physician is lacking in knowledge about your condition.
Third, several posts express a desire to report adverse effects, as well as doubt that a given personal physician would do so. If you have suffered from adverse effects, and want to report it, you do not require your doc, family practice, psychiatrist, or whatever type, to do so. There is a government website available for the reporting of adverse effects, and it is available to consumers, too. The report data goes to the FDA, which sorely needs such reports, as the drug companies are less than honest with THEIR submissions of information, and the dissemination of research data leaves much to be desired when it comes to the publication of information that is less than glowing about any given drug. I believe that you can find the reporting website on the FDA's site, or some link there. I wish I could recall it here for you.
Fourth, topamax, like most complex drugs for complex diseases and conditions, will affect each person very differently. Some will have little or no problems with adverse effects, while others will find the drug to be anywhere from uncomfortable, intolerable to damn near, or actually fatal. fatalities have occurred with topamax, as they have occurred with almost all, if not all, drugs. There is always a risk for adverse effect, sudden sensitivities, allergic reactions and other wonders and horrors of medicine. This is the nature of it. You have a bad reaction to anything that your body comes in contact with at any time for reasons we do not undrstand and can not even yet identify. Your typical cough syrup could, without warning, suddenly produce in you a rash that could kill you. But the conditions and diseases that drugs treat can be just as awful, and leave us with no option but to take the drugs to survive. Most experiences are not so extreme. For those that are, the greatest sympathy. But just because one had a bad experience with a drug doesn't mean the drug is wholly bad, evil, toxic, or should be banned, or that the drug company should have a class action lawsuit lobbed at it. Drug companies are NOT, in general, being fully honest with their disclosures. But banning a drug because some people react badly doesn't address this, nor does it do any good for the segment of the population that benefits from the same drug with little trouble. I have had very bad experiences with some drugs, but do not feel that these medications should be banned. i know other people who depend on them, and I would not deny them just because I lots hair, gained weight, experienced akasthesia, etc. The individual reaction to a drug requires, sadly, at this time in history with our very limited unerstanding of pharmacokinetics and pharmacodynamics, individual trials. And those trials will often have their share of troubles, too. That is how we find out what works for us and what does not, and that is where we re right now. Maybe in two or three decades, with better understanding of genetics, genomics, epigenetics and related fields, we will be able to customize our cocktails with less trial and much less error. I would love a day when a blood test will tell us who will benefit the most from which drug while having the least adverse effects. I hate going through trials. right now, what I am taking is working without giving me problems. For that reason alone I may decide to NOT try and increase the topamax as my current psychiatrist would like. After all, she wants to increase it so that it might help me lose more weight. I am already losing weight without the increase, and the increase might bring adverse effects, or the additional topamax could simply destabilize my currently very stable mood. The last would then require me to go through another dreaded drug trial to find a new cocktail, a mess I have not had to endure for nearly two years now. I do not think that, for me, the additional POSSIBLE weight loss benefit is really worth the possible adverse effects. The doctor is rather casually experimenting with my life, probably curious to gather more data about topamax's efficacy as a weight-loss drug. I am not so sure that I want to rock my boat. I get the benefits from topamax that i am interested in, mood-stability and headache prevention, from the 50 mg that I already take. I'd rather not exp-erience what most of the posts here have described for adverse reactions, and I most especially do not want a rather casual, needless sort of medication modification to set off a chain of events that results in mood destabilization. That said, I am glad to have topamax available for me to take, as I am fairly sure that it contributes to my cocktail, turning down the amplitude of my highs and lows at a mere 50 mg per night. I would be sore to lose it, and do not want it banned. But I do not think I would want to take more than I am taking now. The somnolence I experienced in the past at 75 mg was not comfortable, and was the type that prevents any meaningful work from being done, anything from reading to laundry to following a conversation. I would not like "pins and needles." I hate it enough when I hit my elbow or when my foot falls asleep! And I really hated akasthesia that I experienced when I tried ability, a drug that made me right sick, but that I know absolutely saves others from oblivion, like my grandmother. I hate the adverse effects, or the experience of them, but I do not hate the drugs. and while I may dislike the drug companies, it is not just because drug have adverse effects, it is for the more perverse behavior of the companies themselves. One still has to try and be, if not positive, rational about one;s experiences. It is healthier to see experiences with drugs as learning experiences. Not everything in life is fun, but try to make everything have some value in experience.
I wish you all better days, and calmer, too. May you all find good and caring doctors, and develop excellent therapeutic relationships with them. May you know your diseases and conditions, own them, control them and thus conquer them.
April 16th
2007
10:57 AM
Havew been on Topamax 6 months for FHM. Before taking it I was going unconscious(& hospitalized) every 3 weeks. It was suggested I gradually build up the topamax until taking 400mg per day. At first I got on well. I began to lose words but put up with this as my mood was better & I had no attacks but gradually this changed I became depressed, I could not think properly, prayers I had said `all my life I could not remember,I became frustrtated as I coyuld not remember simple words & names. My cognitive skills became almost non existent & then after 3 months I had an attack & then 3 weeks later another VERY bad one, When I regained consciousness I am told I was acting like a mad person trying to push away non existent people & suffering from Alice in Wonderland syndrone. This did not improve & in fact I srted suffering from every known side effect of the drug. I decided to ask if i could come off it. I was convinced it was the Topiramate causing the side effects. My Dr suggested reducing to 200mg per day. I have done this & am much better in mood & mind is much clearer. I still find difficulty with words but as I have not had any attacks i have decided to stay at 200mg for a bit though I hope in due course to reduce to 100mg per day. Has anyone tried it for FHM & whqt results? Thank you
-- By raymonda | Reply | Private Message me
January 13th
2009
4:21 PM
I am on my second time around with Topiramate (generic Topamax). It has been a year, and I have no reason other than weight loss to take this drug. I also don't know if the online generic versions are really Topamax except I do experience some of the side effects I read about, the tingling arms and legs, the itching, and the foul tasting carbonated drinks. I have started at 25 mg. per day 3 days ago, and am at 250 mg today with no cut in appetite except an hour after I take the pills. Do you think they are even real?
-- By riclavelle | Reply | (2) replies | Private Message me