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    Old 05-08-2006, 05:36 PM   #76
    DogMom22
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    Re: Calling all Topamax Users (topiramate)

    I too sit at a computer all day too! Before I tell you my little story - you might want to ask your doctor if you could try taking the whole 100 mgs at night since you aren't feeling even part way human until so late in the day. I did this for a while when I couldn't function. Now remember, this stuff effects everyone different and you have to weigh the benefits over the side effects... So when I changed to 100 at night and none in the morning what I found generally was that I still had the full benefit of headache control (my migraines are not caused by my back problems oe neck issues - I have always had what I will just call regular vascular migraines) - anyway I did feel a little more human during the day by not taking any dopamax in the morning - but not much - still couldn't concentrate, still loosing words (and dogs), still pretty stupid - for me not really tolerable. (My doc was the one who recommended trying the full 100 at night instead of 50/50.) Anyway, it was then that I asked my doc whether I cold try a lower amount all together and is why I am at just 50mg once a day that I take at night and it helps my migraines and I just this week determined that it is also helping my back problem - I forgot to take it one night last week and my back pain was much worse the next day - and I remembered that a few weeks before I had forgotten to take it on night and had the same increase in back pain the next day - so I have concluded that the topamax is helping my back problem. Now at the 50mg I am still having problems concentrating that are bothering me but my migraines are down and my headaches are almost 0 which is great compared to before - I am however debating whether to keep taking it or not because of the concentration problem - it is affecting a lot of parts of my life - I decided to hang on longer, hoping I will get more used to it - I think I am able to keep hanging on because of the realization that it is helping my back and I am loosing weight - about 10 pounds in 10 weeks or so, which is good cause I just couldn't exercise any more last fall and gained 10 so I am back where I started - except I still hurt too much to exercise.

    I tried to post my story - but I got a message that it was too long - that's me always ramnling - I am going to cut it and post it on the post that says post your story here if you are interested.

     
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    Old 05-09-2006, 05:10 AM   #77
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    Re: Calling all Topamax Users (topiramate)

    I have not had the weight loss effect but I recently had foot surgery and am walking in a surgical shoe. I have 2 more weeks in the shoe. I am only on 100 mgs of topo. Migraines have decreased somewhat but I still get some. I had a bad one the other day preceeded by Aura (why dont we have spell check on these boards?) anyway between the surgery and the hobbling around on the shoe an old friend of mine saw me and said "You have gained a lot of weight girl" I am like "thanks" To myself I said " YOu still have that big old Bubble Butt you have always had I see. It really hurt my feelings of course since I can't run track right now in my surgical shoe. I have been eating healthier but I am very short so I have to lose a lot for it to show. At least Topo is working on the Migraines. I am thankful for that.

     
    Old 05-09-2006, 06:39 AM   #78
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    Re: Calling all Topamax Users (topiramate)

    I do have to say that I no longer sit at the computer all day---only for the couple of minutes that I chat with you guys If I hold my head or any other part of my body for more than a few minutes now, I end up in a lot of pain. I will ask my pm dr about adjusting my dosage and see what he says. I have also noticed some muscle twitching at night--I wonder if it is conected? I am wondering also, now that I am out of therapy and not seeing a chiro if I could go off of the topo. No one could touch my neck before whithout me getting a migraine. Last night my oldest daughter walked up behind me and grabbed my neck , I almost panicked. She was like-Oh, Mom, don't be a baby. I was worried. Before, that's all it would take to set off a migraine. I've been checking out the other boards trying to find out what I can about the steriod injections. some people are really against them and others (not very many) say they help. I see my pm dr on Fri, so we will discuss my options then I suppose. A spell check would be good since concentrating and spelling seem to be my biggest problems on the topo. Have a good one!! I'll see if I can find your story!

     
    Old 05-09-2006, 09:03 PM   #79
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    Re: Calling all Topamax Users (topiramate)

    Hang in there BlueStream I will watch for your posts to see how you are doing.

    Note to DixiePeep (did I get that right) - I think you said you were on 100mg topamax for migraines (and it was working for migraines) and you just had foot surgery and are in the walking cast. I had endoscopic surgery last december for plantar faciitis (sorry I can't spell it but I can pronounce it) and did the foot cast thing and I did gain weight then, plus that was when I finally had to give up exercising due to my back problem, just couldn't take it anymore. I know about how a statement like your friend (?) made can sting - they kind of joke and don't mean to hurt but when you are already sensitive ouch. Anyway, I don't know how overweight you are or aren't and I don't know how much of this very long and very great post of BlasterBoy's you have read or how much research on the internet you have done in regards to topamax and it's weight reduction side effect. So in case you haven't quite gotten everything we have shared here on this board let me offer kind of what I have gotten from my own research (I am no doc or medical professional) and my own personal experience and maybe this can help you with your weight problem in addition to trying to eat well - which is important and ultimately the best way to maintain a good weight. So, 1) weight loss on topamax is a common side effect but not everyone gets it, you may or may not be one who doesn't get it 2) the drug does not increase your metabolism or do osome other magic to make the weight just come off, in other words it doesn't allow you to consume the same amount of calories as you did previously with the same amount of exercise and somehow magically burn more 3) the way it does promote weight loss is that it effects brain neurotransmittors that effect appetite and feelings of fullness and feelings satisfactions and even cravings for sweets and carbohydrates and 4) Finally, depending on what other meds you might be on, they might counteract the weight loss effect of topamax or the reverse (sometimes depending on a person's medical condition topamax will be the drug of choice given to help counteract another drug's weight gaining side-effect, specifically some of the anti-depressants, as topamax is amoung many other things is also used as an adjunct therapy for bipolar disorder (just becuase we take it for migraines or nerve pain does not mean we are bipolar or have epilepsy - this drug just has a very wide range of uses). Ok - so for you, my recommendation would be to try to listen to some of your bodies cues that the topamax might be giving you - look for feelings of fullness and satifsfcation - see if you are really hungry - of and finally - I don;t know if you just started taking it - for me it took several weeks before I noticed that my appetite changed and often I was not hungry. SOmetimes I found I just wasn't interested in clearing my plate - which was weird - that was something I always did before. I'm done - feeling bad that I am taking over Blasterboy's post - but I know how sucky it is to suffer with weight gain - curious what other meds you are on as some can really contribute to weight problems...

     
    Old 05-10-2006, 05:24 AM   #80
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    Re: Calling all Topamax Users (topiramate)

    Just seen my PM doc today as I've been suffering really bad pain over the past few days and he's added Lyrica to my Topamax and he's it to be the top dose of Lyrica 300mg a day ontop of my 400mg of Topamax 400mg a day; he's also trewed other meds, but I didn't know that Lyrica works on different calcium channels that Topamx; I thought that they were basically the same. The most hopeful thing about this is that I found Lyrica the most helpful med in that class but the weight gain was too much to bear, so I'm hoping that the Topamax will cancel that out!!! Time will tell.

    The main reason I'm in so much pain is that I'm getting married in 10 days; not good for a cronic nerve pain suffer, I'm breaking out in little white spots on my torso and chin and spots on my face and although I feel reasonably calm on the outside the central nervous system takes no prisons, or is that visa versa; DOPAMAX......

     
    Old 05-10-2006, 05:32 AM   #81
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    Re: Calling all Topamax Users (topiramate)

    Quote:
    Originally Posted by DogMom22
    Hang in there BlueStream I will watch for your posts to see how you are doing.

    Note to DixiePeep (did I get that right) - I think you said you were on 100mg topamax for migraines (and it was working for migraines) and you just had foot surgery and are in the walking cast. I had endoscopic surgery last december for plantar faciitis (sorry I can't spell it but I can pronounce it) and did the foot cast thing and I did gain weight then, plus that was when I finally had to give up exercising due to my back problem, just couldn't take it anymore. I know about how a statement like your friend (?) made can sting - they kind of joke and don't mean to hurt but when you are already sensitive ouch. Anyway, I don't know how overweight you are or aren't and I don't know how much of this very long and very great post of BlasterBoy's you have read or how much research on the internet you have done in regards to topamax and it's weight reduction side effect. So in case you haven't quite gotten everything we have shared here on this board let me offer kind of what I have gotten from my own research (I am no doc or medical professional) and my own personal experience and maybe this can help you with your weight problem in addition to trying to eat well - which is important and ultimately the best way to maintain a good weight. So, 1) weight loss on topamax is a common side effect but not everyone gets it, you may or may not be one who doesn't get it 2) the drug does not increase your metabolism or do osome other magic to make the weight just come off, in other words it doesn't allow you to consume the same amount of calories as you did previously with the same amount of exercise and somehow magically burn more 3) the way it does promote weight loss is that it effects brain neurotransmittors that effect appetite and feelings of fullness and feelings satisfactions and even cravings for sweets and carbohydrates and 4) Finally, depending on what other meds you might be on, they might counteract the weight loss effect of topamax or the reverse (sometimes depending on a person's medical condition topamax will be the drug of choice given to help counteract another drug's weight gaining side-effect, specifically some of the anti-depressants, as topamax is amoung many other things is also used as an adjunct therapy for bipolar disorder (just becuase we take it for migraines or nerve pain does not mean we are bipolar or have epilepsy - this drug just has a very wide range of uses). Ok - so for you, my recommendation would be to try to listen to some of your bodies cues that the topamax might be giving you - look for feelings of fullness and satifsfcation - see if you are really hungry - of and finally - I don;t know if you just started taking it - for me it took several weeks before I noticed that my appetite changed and often I was not hungry. SOmetimes I found I just wasn't interested in clearing my plate - which was weird - that was something I always did before. I'm done - feeling bad that I am taking over Blasterboy's post - but I know how sucky it is to suffer with weight gain - curious what other meds you are on as some can really contribute to weight problems...
    Yes, Funny you said that because lately I have been leaving off things from my plate like potatoes. I have decided that pototoes are the Devil (that what I Joking say when I think a food makes me fat or goes straight to my hips) potatoes also make me terribly sleepy if I have them at lunch and I don' really like potato chips that much anyway. It is like mindless eating sometimes. I am thinking about "what" I am eating and "why" I am eating. I am also eating more Wheat instead of white bread. I get to wear regular shoes in two weeks and while I won't be running marathons I will be able to walk a little more. My problem is when I get depressed I eat and I am really depressed today. I guess I will go join that board too. I am on the foot board too. My husband lost his job... I will spare you the details. It could be a number one country song if I had music.lol. I end up heading for the chocolate. Lately it has just been weight watchers chocolate. No vending machines, no kit kats, Just low fat granola bars. I am happy that I have less migraines, that is wonderful for me. I can deal with the stuff when I can walk better. I appreciate your post and you listening to me ramble on. I have a lot of friends but somehow I always get to be the listener. Sometimes I need to ramble. Thanks

     
    Old 05-10-2006, 05:56 AM   #82
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    Re: Calling all Topamax Users (topiramate)

    Oh My BlasterBoy! Spots! What does doc say about that? I hope your pain goes away soon. My heart goes out to you and your future Bride. Getting married has enough stressors of its own without physical pain and spots. Bless your hearts. Saying prayers for you both. Keep us updated.

     
    Old 05-10-2006, 06:05 AM   #83
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    Re: Calling all Topamax Users (topiramate)

    Thanks Dixie, I'm taking Pro-biotics also, to helps the body cope in some way, but I feel like I can play "Jingle Belles" if I jump up and down :-)

     
    Old 05-10-2006, 06:26 AM   #84
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    Re: Calling all Topamax Users (topiramate)

    Congradulations Blasterboy!! Maybe your spots are stress and will go away?? I hope so!! DixiePeep--Don't feel alone, I've put on weight also. My husband is the one who makes the little remarks. I keep smiling to myself and think, well he was the little chub when I met him. lol Then I feel better. I've noticed that I don't always want to finish my plate and I've started ordering smaller meals when we go out for dinner. I was getting some incredible cravings for cake tho--something I've never really cared for before. I had to cut that out. Weight loss takes time, especially when you can't get a whole lot of excersise--so hang in there!!!

     
    Old 05-10-2006, 07:05 PM   #85
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    Re: Calling all Topamax Users (topiramate)

    Wow, BlaserBoy - now on Lyrica and getting married! Actually - congradulations and let's hope the little spots go away after you get married - stress (good and bad does funny things to us). Now to the Lyrica - I have heard of both Lyrica and Topamax being used at the same time, although the same class of drugs that the have slighly different mechanisms (and maybe that is what you were referring to with the channel something or others) - but one of the main reasons they are used together is exactly as you stated - the weight gain from Lyrica - the hope is that the wight loss side effect from topamax will counter it somewhat or a lot - that's what I was trying to explain to DixiePeep - they use Topamax w/Neurontin and Amtriptyline (when you have the right kind of medical conditions as those 2 drugs are very bad for weight gain also. Gosh I hope this helps bring you pain down some.

    I have had a little change in side effects with the topamax and don't know what it means. Just in the last few days, my appetite has changed more like it used to be - I am eating more and going for more sweets. Can't figure out why, nothing has changed - no new meds, no change in meds, no change in stress. I am trying to evaluate if I still have the same level of dopamax problems concentration - don't know yet - I am wondering if I have finally become adjusted to it. Time will tell and I keep you guys updated. No change in pain level or return of headahces so I believe it is still working. Not sure if I am happy about it or not. I think I will be happy if I find my concentration is back - I need to wait for a few things to happen where I will know for sure if this is improving - there are a couple things I try to do that this is really hard for me since taking dopamax. Later.

     
    Old 05-11-2006, 09:20 AM   #86
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    Re: Calling all Topamax Users (topiramate)

    Curious, Why does cola taste so flat?

     
    Old 05-11-2006, 09:58 AM   #87
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    Re: Calling all Topamax Users (topiramate)

    Not sure on that one, but it reminds me that I wanted to share that I've found that I can drink Spirte/7up no problem, the taste is barely effected. I noticed this whilst on holiday and it was so bloody hot that I had to have something like a cold can and I was so relieved it tasted ok :-)

     
    Old 05-11-2006, 10:31 AM   #88
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    Re: Calling all Topamax Users (topiramate)

    I drink diet anyway but it tastes flat. Sprite is okay like you said. I joined a walking club at work but can't really walk a lot until I get this surgical shoe off. I enjoy walking at lunch when it is not too hot outside. It really lifts my spirits. It is kind of depressing not being able to get around with this surgical shoe. Two more weeks and I hope to at least be in a pair of Nike's.

     
    Old 05-11-2006, 02:14 PM   #89
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    Re: Calling all Topamax Users (topiramate)

    Dixie - the thinking is (I don't know but form what I read) the reason topamax users have a common side effect of not being able to enjoy sodas cause they loose the ability to enjoy or taste the carbonation is that the topamax has either carbon in it or involved in it's making and so when it get's into your system it somehow messes up how your body reacts to it - I know that wasn;t a great scientitifc explanation, but it was the best I could find and it is an extremely common side effect - one topamax web site I went to when I started preps you before you take it and tells you that you need to be willing to give up soda cause it is going to taste like '...' I won't repeat the word they used - the point is it is common. I noticed when I lowered my dosage it got better, I also noticed that diet is worse than regular (which stinks cause diet is all I drank) and if it comes out of a fountain I can't drink it at all, but out of a can I can tolerate it. Pretty much I now drink one diet soda in the morning and the rest of the day I drink Propel (flavored water, very low calorie.)

     
    Old 05-12-2006, 07:21 AM   #90
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    Re: Calling all Topamax Users (topiramate)

    I've also noticed that 7-up is much better that a coke right now. One thing that hasn't gone away yet for me is that I am still getting short of breath very easily on the topamax. I'ts getting to be kind of a pain. I was scheduled to have the injection on the 23rd, but it has to be rescheduled. The pm said that if it works for me I may be able to get off of the topo. Now that the headaches are better I've been trying to do a little more, but I find that I keep getting slowed down because I'm running out of air. I'll ask my pm about it today at my appt. My husband has been gone all week so I thought I would suprise him and repaint my kitchen and redo my cubbard doors--well I have way over done it and talk about being in a lot of pain. I've got the usual pain in my neck and arms, but a squeezing sensation around my head too. I haven't had that in a few months. Painting is not something that someone with a bad neck should do, just in case anyone else is consindering doing it. My kitchen is pretty tiny so I didn't think it would take a whole lot--who was I kidding!! I didn't even do the ceiling! My daughter was a big help for the first couple of days, but even she said it was only fun for the first couple of days. DogMom--when I got home yesterday--there was our big, portable airconditioner laying out in our front lawn, with the cord chewed off of it. The dobermin had dragged it out of our shop by the cord! This thing is four feet tall!! My husband said it's no differant that a smaller dog dragging a blow dryer around. This is why I need to have my breath back!! I did find it kind of funny and he is still puppy at ten months. He keeps life interesting. Everyone has a great day.

     
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