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Dr. Bob is Robert Hsiung, MD,
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Posted by Gorda on December 30, 2002, at 19:20:09
In reply to Re: Starting on Topomax for Migraines. Advice anyone?, posted by Jaycee on November 18, 2002, at 5:17:27
Re Topamax
It made my hair fall out, I was bleeding under the skin--covered with huge purple bruises that were not from bashing into things. I felt good at first, but it wasn't worth it, and it did nothing for the migraines.
Posted by Gorda on December 30, 2002, at 19:26:47
In reply to Re: How many of you posting are currently exercising?, posted by Bill1888 on December 7, 2002, at 11:52:59
Topo was living hell, now on WB 300 mg, Zoloft 200 mg, nortriptyline 300, Inderal 100, I can't stop eating junk - icecream candy, I can barely move through the day at work, let alone exercise.
Haven't been able to force myself to go tto the gym in a year, need to lose 80 or so pounds, got a "total gym" and I'm having a lot of trouble trying to force myselt to use it. I tthink the huge amount of meds are part of the problem. I feel barely alive -- I should feel better taking all this stuff!!! Any advice?
Posted by Noa on January 1, 2003, at 15:09:17
In reply to Re: How many of you posting are currently exercising?, posted by Stacy Louisa Beus on December 15, 2002, at 10:57:46
Not enough!
I have always struggled with weight, have family history of insulin resistance and late onset type two diabetes (father and grandfather in later years), and since being on my meds for a while (no mood stabilizers, tho), have gained even more weight, and a lot of it in the waste area, which is where the fat cells supposedly store the hormones that make us more insulin resistent. Ok, so I belong to a gym and went religiously for a while, but have averaged about once a month in the past 8 months (that amounts to about a $50 visit each time!!).
I know it helps with my mood and with my weight and insulin resistance, but it is hard to get myself to go and work out.
Posted by jamielynn on January 1, 2003, at 16:05:23
In reply to Re: Starting on Topomax for Migraines. Advice anyone?, posted by Gorda on December 30, 2002, at 19:20:09
I had to get off the meds force myself to walk at least 10 minutes each day. And get off sugars. My mood is more stable and I am still tired alot but it is getting better. I always feel better after a walk, so I try to do it in the morning so it will get me going for the day. Zoloft make me sleep. WB was ok. But it took away that drive to really acomplish anything. I quit topomax as soon as I started feeling all Fuzzy in the brain. 75 mg. I am in College and couldn't risk the dah feeling.
The extra weight I carry is better than my grades.
I would go into more detail on some of the more alternative routes I have been having success with but I think the Dr. just wants med type info not so much chat. Good luck. May you all find yourselves.
Posted by doggrrl on January 3, 2003, at 16:02:02
In reply to Re: Starting on Topomax for Migraines. Advice anyone?, posted by Gorda on December 30, 2002, at 19:20:09
I do not take Topomax for migranes, but for a mild sz disorder and for bipolar disorder (along with lithium and ADs). I have had GREAT luck with it. I lost 22 lbs that I gained due to lithium and neurontin despite intense exercise 5 days a week. Since starting topomax, I have kept the weight off irrespective of my exercise habits, which were curtailed dramatically at one point for 6 months because of a sports injury. I have always been very athletic and had never gained any weight until I started lithium. No matter what I did, I could not shed the extra weight until the Topomax. I realize that I am only one person, and additionally, that I have always been thin. However, I have to say that for me, I am really pleased with Topomax. It also has had a marked AD effect, and has augmented the effects of my other meds. I took it and lithium alone together for months until a number of circumstances necessitated an AD. I take 200 mg/day. The hardest side effect for me was intense sedation. This lessened over time and disappeared but there were days when I thought I would not be able to continue it, especially with my job. I have experienced some naming problems on it -- again hard with my job, which involves lots of cognitive activity, writing, reading, lecturing -- but I can compensate with notetaking. Overall, the benefits -- mood augmentation, weight control -- far outweigh the slight decline in memory. The other side effects I had were fleeting, as I have been on it for over 2 years now and don't remember what they were, except for the horrific fatigue. Good luck to anyone considering this drug, and please write back with any questions. I know everyone is different. I am so sorry for Gorda -- with the hair loss, etc.
Posted by doggrrl on January 3, 2003, at 16:08:33
In reply to I had dramatic weight loss w/ Tmax, posted by doggrrl on January 3, 2003, at 16:02:02
Titrating up slowly is key (my doctor said), as many docs try to take their pts up by 50 mg at a time instead of 25. The last time I talked to him, he told me that now docs are advising pts to go up even more slowly to alleviate side effects even more. When I read over some more of the posts, I remembered that I also experienced tingling, etc. I often stayed at a dose longer than recommended by the packaging insert. It took me months -- I think 6 months -- to get up to 200 mg.
Posted by Ms. C on January 3, 2003, at 22:08:53
In reply to oh, the combinations, posted by art1 on November 16, 2002, at 11:48:21
I am on 150mg Topamax BID so far I forget what I am saying mid sentance. Not a good drug choice. I was wondering if another drug could be added to improve memory. It does stop headaches for me. I have lost some wt. Thats a plus. But not being able to retrieve a word I need when I want to or losing my thoughts mid sentence is too frustrating to make this a good drug to use. Got to be a better one or some combo. Going to lose my job using this ...no mistakes in medicine!!!
Posted by Jumpy on January 4, 2003, at 17:15:58
In reply to Re: oh, the combinations, posted by Ms. C on January 3, 2003, at 22:08:53
> I am on 150mg Topamax BID so far I forget what I am saying mid sentance. Not a good drug choice. I was wondering if another drug could be added to improve memory. It does stop headaches for me. I have lost some wt. Thats a plus. But not being able to retrieve a word I need when I want to or losing my thoughts mid sentence is too frustrating to make this a good drug to use. Got to be a better one or some combo. Going to lose my job using this ...no mistakes in medicine!!!
May I ask are you a physician?Jumpy
Posted by Karla on January 4, 2003, at 20:59:46
In reply to Re: Starting on Topomax for Migraines. Advice anyone?, posted by Gorda on December 30, 2002, at 19:20:09
I tried topamax up to 600mg. It did nothing to help my headaches but did manage to help me loose my memory. It did not effect my weight either way. I think this is a horrible medication.
Posted by Ms. C on January 5, 2003, at 13:53:00
In reply to Re: oh, the combinations, posted by Jumpy on January 4, 2003, at 17:15:58
No Jumpy not a physician but in the medical field. I could potentially make a mistake that could be harmful to someone. I have to check and recheck what I do, be extra careful. Productivity is low because of this. I am assuming I will be disabled because of this drug.
Posted by token on January 5, 2003, at 21:17:01
In reply to Re: oh, the combinations, posted by Ms. C on January 5, 2003, at 13:53:00
> No Jumpy not a physician but in the medical field. I could potentially make a mistake that could be harmful to someone. I have to check and recheck what I do, be extra careful. Productivity is low because of this. I am assuming I will be disabled because of this drug.
i'm not an md either but also in the medical field. when i first started "dopey-max" it took me 12 hours to fill out a report that i would usually do in 15 minutes. i was forgetting names and faces of patients/clients i had just seen a day or two before. i had to refer all my clients to competitors (humiliating!) b/c i KNEW i was not able to trust my clinical judgment or even form sentences- how can i do counseling in the land of nod? my brain works fine now that i've adjusted to it but my private business and my reputation will never be the same. but i must admit, topamax has done wonders for both my migraines and bipolar disorder.
Posted by Ms. C on January 7, 2003, at 6:22:26
In reply to Re: oh, the combinations » Ms. C, posted by token on January 5, 2003, at 21:17:01
Maybe there is some hope then that the forgetfulness of forgetting what you are doing and saying in the middle of it goes away with time. How long did it take you to adjust? I need a to add a new drug on top of this one for depression I think, will find out today for sure. Dopeymax! I like that one :) I feel like I have been more productive of late. My boss is still not satisfied though and verbalizes it regularly. I went from doing one persons job to doing two jobs and the stress of that is killing me, in fact the only reason I have not turned tail and ran away is the fact i am too dopey to learn a new position right now. But today I see the Dr again so perhaps I find out about my tests I had and if my EEG is normal and if depression and topamax were giving me the dopeys and if something can be done with the killer headaches I get that doesnt in fact give me another headache when it wears off the next day, a rebound headache. Ms. C.
Posted by Madge on January 7, 2003, at 10:40:13
In reply to Re: oh, the combinations, posted by Ms. C on January 7, 2003, at 6:22:26
I am curious how quickly you are titrating up on the Topamax. My Dr. specifically stressed that in order to ameliorate the "dopyness" and potentitial cognitive problems that one must titrate up VERY slowly. I have been titrating up 25 mg once a week. The key is also to take the majority of the meds at night. I started at 25mg at night for one week. Then titrated to 25mg in am and in pm. to a total of 50mg for one week. Then again added another 25 mg at night for a total of 75 mg (25 in am and 50mg pm) for one week. Tonight I am adding another 25mg at night to bring me up to 100mg and then I am staying at that level for two weeks. Then I am titrating up to 125 mg for another two weeks and then seeing my dr. I am on Topamax for mood stabilization but also to help counter the weight gain from taking Remeron. In order to lose weight one must be on a dosage of at at least 100 mg. per day. I also take Klonapin .5mg 3x daily.
I hope that helps.
Also, for those who have lost weight on Topamax, at what dosage, did you start seeing the weight loss. I am anxiously awaiting......But trying to be patiently awaiting...
Posted by Ms. C on January 8, 2003, at 4:58:59
In reply to Re: oh, the combinations, posted by Madge on January 7, 2003, at 10:40:13
I started with 50mg per day for 10 days then 100mg a day for the next month or so then 200mg a day for a month or so and now I am at 150 twice a day. Yesterday he added Zoloft 50mg at bedtime. Said it will help with the forgetfulness. Ms C
Posted by AnitaMarie on January 8, 2003, at 11:45:16
In reply to Re: oh, the combinations, posted by Ms. C on January 8, 2003, at 4:58:59
I have found that if I take my "dopeymax" (100mgs) at bedtime I have little of the forgetfullness in the morning. I now take 300 mgs of effexor and 200 mgs of Wellbitrin at 9 am and 200 mgs of wellbutrin at 6 pm and 100 mgs of topamax at about 11 pm. After the initial horrible fatigue and forgetfullness for a week or so, I am doing fine now. My doctor will be increasing the dosage soon so I will tell you how I am doing. My appetite is down but I notice a slight increase in it in the evening. Most likely because the Topamax is wearing off. Diet pepsi tastes horrible and I finally kicked the caffeine habit which was leading to many of my ups and downs too. I am hoping this stuff continues to work but I know me... up and down.. up and down..
Posted by Ms. C on January 9, 2003, at 20:48:48
In reply to Re: oh, the combinations, posted by AnitaMarie on January 8, 2003, at 11:45:16
I take 150mg at night and feel great in the morning all rested and remember everything. Then when I take the morning dose at about 11:00 am...all is lost again. I am hoping by adding the zoloft at night the Dr will be right..hoping and praying too and memory will be restored!! I need it to function. Ms C
Posted by Madge on January 9, 2003, at 21:38:51
In reply to I had dramatic weight loss w/ Tmax, posted by doggrrl on January 3, 2003, at 16:02:02
> I do not take Topomax for migranes, but for a mild sz disorder and for bipolar disorder (along with lithium and ADs). I have had GREAT luck with it. I lost 22 lbs that I gained due to lithium and neurontin despite intense exercise 5 days a week. Since starting topomax, I have kept the weight off irrespective of my exercise habits, which were curtailed dramatically at one point for 6 months because of a sports injury. I have always been very athletic and had never gained any weight until I started lithium. No matter what I did, I could not shed the extra weight until the Topomax. I realize that I am only one person, and additionally, that I have always been thin. However, I have to say that for me, I am really pleased with Topomax. It also has had a marked AD effect, and has augmented the effects of my other meds. I took it and lithium alone together for months until a number of circumstances necessitated an AD. I take 200 mg/day. The hardest side effect for me was intense sedation. This lessened over time and disappeared but there were days when I thought I would not be able to continue it, especially with my job. I have experienced some naming problems on it -- again hard with my job, which involves lots of cognitive activity, writing, reading, lecturing -- but I can compensate with notetaking. Overall, the benefits -- mood augmentation, weight control -- far outweigh the slight decline in memory. The other side effects I had were fleeting, as I have been on it for over 2 years now and don't remember what they were, except for the horrific fatigue. Good luck to anyone considering this drug, and please write back with any questions. I know everyone is different. I am so sorry for Gorda -- with the hair loss, etc.
goggrrl - At what point did you start to see weight loss with the Topomax? I am currently on 100 mg. I just titrated up to that amount last night and will be at that amount for two weeks when I will go up to 125mg for two weeks before I see my dr. Everytime I titrate up with just 25mg, the sedation is pretty intense for a few days, and then I seem to settle into the new dose. I am taking the Topomax for some mood stabilization but also to counteract the initial weight gain I experienced from taking Remeron.
---Madge
Posted by Angelseer on January 13, 2003, at 20:30:40
In reply to Re: oh, the combinations, posted by Ms. C on January 9, 2003, at 20:48:48
Hi all
I am wondering if any of you have had to stop taking Topamax suddenly, and if so did you experience any sort of withdrawl problems?
I have been taking 100mg am and 200mg pm for almost a year and 5 days ago, for a variety of reasons, ran out of topamax. I am trying desperatly to get my meds, but.... cost is outrageous with no prescription insurance and patient assistance program is taking WAY too long.
I have been having alot of anxiety attacks and sleep pattern is completely out of whack. I rapid cycle and it is starting to be obvious to others that something is suddenly not right.
Any thoughts/help would be welcome.
Thanks~ Angelseer
Posted by alijill on January 14, 2003, at 19:44:47
In reply to Re: Topamax Experiences?, posted by Stacy Louisa Beus on December 19, 2002, at 23:30:10
I am now up to 100 mg. in the morning and 100 mg at night and I still feel hungry all the time. I have lost no weight and am actually gaining weight. why am I the only one experiencing this? While I know that I am not on the Topamax for my horrible weight gain, losing it would help. Please tell me I am not the only one who is still feeling hungry and racy.
Posted by Stacy Louisa Beus on January 14, 2003, at 20:30:39
In reply to Re: Topamax Experiences?, posted by alijill on January 14, 2003, at 19:44:47
i am going to restart my topamax tonight. I have a feeling I will be with you on not losing any weight! How long have you been on it?
Posted by myfairlady on January 26, 2003, at 16:10:05
In reply to Topamax Experiences?, posted by Kingfish on January 4, 2001, at 7:29:48
Hi. My husband found this thread for me last night. Wow! There sure a lot of stuff here.
I was started on Topamax on January 4th, 2003 at 25 mg per day. I was on this for about a week when I went up to 50 mg. (Let me add that I am also on 1200 mg/day of Lithium and 300 mg/day of Seroquel.) I started getting noticeable side effects a day or two after I went up to 50 mg/day of the Topamax. I got these two-second headaches (not too painful) on a very frequent basis. (They were on the left side of my head, around the temple area.) At one point, I was getting them every five or ten minutes. I was also having some of thoses "cognitive difficulties" and "word search" problems, too.
My eyes felt sensitive, so my pdoc had me go to my eye doctor to have my eye pressure checked (as a precaution). In the meantime, I was taken off the Topamax. The results of the eye pressure check were okay.
I'm back on 25 mg/day of Topamax. Side effects are pretty mild, but then again, this is a low dose. I feel as though I'm getting some mild - REGULAR - headaches. They may or may not be due to the medication. They're probably just tension headaches.
I also feel tired. My pdoc said not to do any highway driving this week. My pdoc also suggested fish oil capsules (several times per day), vitamin C (1000 mgs?) and 400 IU's of vitamin E.
By the way, those "flash" headaches seem to have stopped, for the most part.
Has anybody else gotten these weird type of headaches? I would appreciate any comments, feedback or whatever you'd like to give me.
By the way, it's GREAT to have found this thread. Topamax is such a new medication. It's hard to find people - even in a support group - who have first-hand knowledge of it.
Posted by Madge on January 26, 2003, at 21:55:05
In reply to Re: Topamax Experiences?, posted by myfairlady on January 26, 2003, at 16:10:05
I have had headaches taking Topamax. I started getting them at higher doses though and they usually lasted only a day and weren't quite as severe as the ones you described. They certainly felt like pressure building in my head though, and were bothersome enough that I worked from home and knew I shouldn't drive. I got one headache for a day when I titrated from 75 mg to 100mg, which was accompanied with pretty severe somnolence for a about a week and a UTI. (That is also another side effect of Topamax so stay very hydrated every day!!! I make sure I drink plenty of cranberry juice every day) This last week when I titrated up to 125mg I had a fairly severe pressure headache for one day preceeded by just one day of sedation, and now I feel like a million bucks. I don't know what dosage I will settle in on, because I am taking Topamax for weight loss to counteract the gain on remeron, and I haven't started losing any weight yet. The weight loss starts anywhere between a dosage of 100-200mg. The key to mitigating the side effects on Topamax is titrating very slowly. 25mg at a time, and having a VERY good, compassionate, accessible pdoc. I know for me, that I have had to adjust everytime I titrated ie there were some side effects, severe somnolence was the most prevelant, occasionally some cognitive dopyness, then I would adjust after a few days, and I felt fine. But I knew that everytime I titrated I would have to allow myself some potential down time in case I didn't feel well, and be ok if I couldn't follow through with plans I had made. All in all, the side effects for me have been pretty minimal on Topamax, and I wish you good luck as well.
I am also taking 1gram of fish oil, and 800 iu of vitamin e a day. The purpose of the Fish oil is two fold: There has been research indicating that at that level it acts as an antidepressant, and two, Topamax is constipating, so the fish oil helps that.
There is also a really good thread on Topamax that was started in Dec 2002,(One woman in particular who wrote in who was also on Lithium and Topamax), and others earlier in 2002 that were also helpful to me when I started taking this drug.
Why are you adding Topamax to your regimen?Hope this helps.
Posted by myfairlady on January 27, 2003, at 19:17:25
In reply to Re: Topamax Experiences?, posted by Madge on January 26, 2003, at 21:55:05
Madge -
Thank you for your input.
The reason why I have added Topamax to my regimen is that my pdoc could not put me on a higher dose of Lithium - it was causing diarrhea. Or maybe it was some of the foods I eat. Anyway, she was concerned about potential toxicity of my liver. Also the Seroquel was not giving me any results and I was also having some side effects. My pdoc is going to phase out the Seroquel. Topamax was added for additional "mood stabilization". (I'm Type II Bipolar.)
Thank you very much for the suggestions. I will be sure to drink plenty of water and drink cranberry juice. Tonight I'm going up to 37.5 mg of Topamax (The dosages of my other medications are the same as in my first post from January 26th.) So far, I'm having no headaches tonight!
myfairlady
Posted by seahorse on January 30, 2003, at 1:33:00
In reply to Re: Topamax Experiences?, posted by myfairlady on January 26, 2003, at 16:10:05
If you have curly hair and want it permanently straightened...I strongly advise Topomax!! My doc thought I might be bipolar 2 (poor man was grasping at straws) and since seraquel did nothing and I gained weight on one of the others, I went on Topomax. I think I got up (slowly) to 300 mg. I lost a whole 5 pounds. I never felt right on it--no headaches, just a wierd out of body feeling. Oh, and the bloody noses. And, of course, my hair...it got very dry, and straight, and I blamed my stylist..then doc found a rarer side effect is change in the hair texture. I went off it and hair became healthy, but remained straight. I realize this may not be a big deal to someone truly bipolar (I am not--more likely my adhd and depression combined raised possiblility) who gets relief from topomax...but I really prized my natural curls...and...(sob)...I still have not come to terms with straight hair! My bald doc has no sympathy, even when I threatened a malpractice suit :-). (and no perms--I cannot since I also color) Oh, life goes on, I guess!
Posted by Stacy Louisa Beus on January 30, 2003, at 6:26:47
In reply to Re: Topamax Experiences?, posted by seahorse on January 30, 2003, at 1:33:00
So you hated Topamax? Did you lose weight or just lose your curls? I am a hair stylist, so I do sympathysize (spelled wrong). I have been taking Topamax for a month now and I have lost about 5 pounds. The good news is my Pepsi tastes like alka seltzer, which means I dont drink it after drinking pop since I was 3 and I am 30 now! I really need to lose weight!
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