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curiousforever 04-27-2006 12:58 PM

Re: Calling all Topamax Users (topiramate)
I haven't gained weight on the lyrica.

i have a few days a week where I throw up. i hate it and it's due to the meds I"m on...

BlueSteam 04-28-2006 06:54 AM

Re: Calling all Topamax Users (topiramate)
DogMom, sorry it took me so long to get back to you. I had unrelated dr appt's yesterday. I was looking at other boards about the topamax and that's where I found people who where still having trouble with the topamax. This one guy, tho, I was really wondering about, because it seems like he had a lot of other mental troubles, that could be causing some of it. But other people, had lasting effects also, only for a few months. To me, not having the headaches is so worth it. Iv'e even had more energy. I did over-do it the last couple of days and now my neck is killing me. Thanks to BlasterBoy, now know why I am craving sweets!! I never was into cake, or sweets before and now all the sudden I want cake. I only make it thru half of dinner, tho. Once in a while the pins and needles get very intense and drive me nuts, but sometimes it's very mild. I've even had it in my knees. I did notice the colder the temp. the worse it is. BlasterBoy--maybe try to keep your feet warmer in bed, lol!!

BlueSteam 04-28-2006 07:04 AM

Re: Calling all Topamax Users (topiramate)
Oops--I forgot to let you know, DogMom, I moved right up to 100mg's without a problem, a little brain fog, hard time typing, lost my truck keys (which was alchohol induced, we were celebrating and I used the keys to unlock the house) etc, just stuff to laugh off. I don't really know if a person is supposed to drink with the topamax, but I do know they are considering giving it to alcoholics to curb drinking. It made my husband nervous, but jeez I needed a break and I felt good, but sitting on a barstool for hours made me hurt, so I don't advise that. We rarely drink, but I'll ask when I see the dr today. I'll also find out if I'll me going up on my mg's anymore.

Blasterboy 04-28-2006 07:13 AM

Re: Calling all Topamax Users (topiramate)
Thatís an interesting one, about giving it to Alcoholics to curb drinking. Sort of like sticking a band-aid on a crack in the Hoover dam, IMO..... I can't see it. But then I'm not an active Alcoholic so I can't judge whether it has any benefit with that. I gave up drinking the AA way nearly 5 years ago and it had to be complete abstinence for me.

Still I bet the drug company would love to get this approved as a treatment for Alcoholism!

DogMom22 04-28-2006 01:53 PM

Re: Calling all Topamax Users (topiramate)
Thanks for the updates everybody. About the pins and needles, when I was having them they were a little bit on the painful side to the point of being uncomfortable and the spells would last about 15 minutes or so. Now I don't think I am even getting them. I suspect the higher does BlasterBoy is on could be accounting for this - no matter it sounds like BlasterBoy is getting great benefit from topamax since he has been able to reduce the need for other meds. I read somewhere that drinking lots of fluids can help with the pins and needles side effect and I also read that the drug manufacturer recommends drinking lots of fluids becuase of the kidney stone problems associated with long-term use. I used to drink diet sodas around the clock (switched to non-caffienated at night). Because of the taste I can still drink them but I have added drinking Propel - a gateraid product. It is expensive if you but if from 7-11 but I can get it at Walmart for a good price and the Berry is excellent - I am finding I prefer it over soda - but I still need my soda for the caffiene in the morning. One of the topamax sites I have been on has a lot of people raving about this propel to help with increasing fluid intake - I was skeptical at first cause I just don't believe in buying bottled water - cripes water should be free ya know? BUt this stuff tastes so much better than water and it has like 10 calories for 16 ounces - so I thought I would share.

I also wanted to share about BlasterBoys comments about realizing that he is actually having some trouble with the word lose but kind of didn;t know it. I too am a fairly confident person and generally move very quickly over these incidents, with a joke, a smile (or nothing at all) which leaves no time to be embarrassed, however I was aware of this very common side effect before I started the meds so I was kind of looking for it. I told all my co-workers and my boss about it before I started taking it, so if I did something dumb or weird they would know why.

BlueStream - so glad to hear that it sounds like this is working for you too.

I did have a migraine yesterday :mad:, my Axert didn't zap it and it was the first one I had since going on topamax. It was that time of the month (sorry guys) but is typcially a migraine trigger for me. It was a really bad one, so I went to the ER for toradol (a non-narcotic which often works for me and allows me to stay cool with my PM contract). Typically this type of migraine at this time of month will take me out for a couple of days. ANyway, while I was in the waiting room (about 2 hours) - it went away! :bouncing: This is soemething else that topamax is suppose to do - it is a prevanative but is also suppose to lessen the frequency and duration of the ones you do get and I can definetly testify that this is true - in the past this would never have gone completely away - I was fine afterwards, not the usually post migraine sick.

Also thanks for the updates about the long term effects that might stay with you afterwards - what you said makes sense and maybe this person had problems to begin with. By the way topaxmax is also used for a variety of mental illnesses usually in combination with other meds. When I first started taking it I couldn't figure out why it could possibly help with so many different ailments and I finally found an answer that I can understand. Basically, topamax slows down neurotransmitors (GABA to be specific and most directly impacts the temporal lobe and is why we get the cognitive side effects). Anyway the idea is that the nerves are slowed down, less likely to react to stimulus, so for epilepsy they help prevent the chain reaction that starts a seizure - migraines, same kind of thing - anxiety - slows them down - and same for pain - the idea is if they are less active and not responding to every little stimuli that you will have less of whatever ails you.

Have a good weekend!

BlueSteam 04-29-2006 10:02 AM

Re: Calling all Topamax Users (topiramate)
Hi everybody, first of all, I have said that I haven't had problems with remembering words, but then I have been home mostly, I could not find words when I spoke to my dr yesterday and then when my husband and I went out for a couple hours last night (again) so I lied. I did have my second appt with the pain dr yesterday and he was pleased that the topamax is working and he said he did find bulging discs in my neck. Since Oct. my other dr has said my MRI was clean, no problems. I am beyond angry now. I am not sure what to do. He wants to try steriod injections on the 23rd of May and I'm scared of that. So now I have buldges in both my lower back and neck with nerve problems in my legs, feet and shoulders and arms. If I was a horse, I'd be dead. I did have to be put on nexium last week for really bad heartburn and this dr wants me to cut back on the motrin or quit taking it and won't give me anything else. What the heck!! I really want another MRI done, it's been six months and things are worse, but he won't do it. I'ts going to be so hard to find a job that won't hurt my neck or my lower back. I guess I'm just lost. And sad. My husband keeps telling me to listen to this new country song that says if your sad don't show it. Whatever. Today we have to go burn a stuble field so maybe it will get my mind off of all of it. It is very nice out, no wind, which is so unusual. Have a wonderful weekend all of you and thanks for listening. I feel better now. :)

Kissa 04-29-2006 12:02 PM

Re: Calling all Topamax Users (topiramate)
Bluesteam couldn't you go to another doctor for a second opinion, preferably a nuerosurgeon or orthopedic surgeon who specializes in spine surgery who in fact may do a new MRI since it has been 6 months?

BlueSteam 05-01-2006 06:15 AM

Re: Calling all Topamax Users (topiramate)
Because this is a work comp claim it makes everything very touchy. I am contacting my lawyer today to see about a second opinion. As far as I understand I should have that right. I sure hope so. I'm sorry my post yesterday was so emotional--I'm better today. I was so angry that we have wasted so much time. I could also tell that my first dr didn't believe me when I was telling her how much my neck hurt. I am letting her know today what we found also. She is a nice person, just very inexperienced I think. and a pill pusher. It is so nice not having these headaches. I find myself doing too much tho and hurting my neck, so I guess I had better slow down. darn. If I can get ahold of the lawyer I let you know what happens. Thanks for the support. Angela

nobodyatall 05-01-2006 08:35 AM

Re: Calling all Topamax Users (topiramate)
I am on 100mg - i cut back myself - my pill pushers had me on 200mg and I did not like what it was doing to me. I was groggy and lifeless.

And to be honest - it has not done much for all the head damage I have from the accident. It has been 4 years - just getting worse - not better.

I was a comp claim - and they did everything under the sun to deny my meds/docs/tests! I had to take them to court every other month - but I was still denied.

It wasn't until one of THEIR doctors said I was being denied seizure meds in his report - then they finally started to pay for it. Big deal - $300 a month they had to pay - but then they denied all the rest - comp carriers and their attorneys are maggots! They would rather see you die than help you. Then they wonder why we become totally disabled and we cannot work anymore - they deny everything! With proper care and meds as well as therapy - we could have a better quality of life - but they don't care - may it happen to them too.

trinity4Him 05-01-2006 11:17 AM

Re: Calling all Topamax Users (topiramate)
:wave: Hi everyone!

Gosh, the more I read, the more I realize the effects Topamax had on me and I didn't realize it was Topamax! For instance, the tingles in the legs; I took my pills every night when I got home from work (about 7) and that night about 8 or so as I was laying on the couch, my legs would begin to have those tinglely feelings - pins and needles. I had no idea what it was; I thought I had very bad circulation - hence the cold feet I always have. And are y'all saying the Topamax caused you to crave sweets? Because I have never been addicted to any kind of sweets and can easily go without, but when I was taking the Topamax, all of a sudden I couldn't pass it up. Instead of sharing a dessert with my husband, I wanted my own! Amazing!

I feel for each of you. I'm sorry for the pain and I can truly say, I know what you are going through. Maybe some day they will have a cure, not a fix. Think?

Have a wonderful Monday and God bless!

BlueSteam 05-02-2006 06:29 AM

Re: Calling all Topamax Users (topiramate)
The lawyer said being sent to the pain dr was a second opinion. Maybe. She also didn't have much to say about being misdiagonosed for 6 months. I actually talked to the paralegal, so maybe the lawyer herself will have something to say. I have really overdone it with my housework. I can feel the headaches wanting to get me. And now the neck pain is really bad. It's been nearly a year since I have felt this good and I did too much. I will take it very easy over the next few days, and not do that again. I had to be put on an antibiotic yesterday with all kinds of wierd restrictions, like no caffiene, vitamins, or large amounts or food. I love my coffee. I wonder if anyone has ever gotten a strange taste in their mouth from the topamax. It's a hard one to explain. I'm also losing things. I still can't find my truck keys! My daughter is having so much fun with all of this. Teasing me about my dopamax!! I am finally sleeping better at night. No naps during the day anymore. Have a good one!!

DogMom22 05-02-2006 09:40 PM

Re: Calling all Topamax Users (topiramate)
Ah yes the loosing things problem. I had it more in the beginning and still now occassionally. It is from the topamax for me I am sure as I never had the problem before and it matches the list of side effects very nicely. It is part of the ability to recall (where did I put that? or where do I keep that?)

Usually now when I loose something it is only for a short while (under a half hour) and thankfully I haven't lost my keys. Here is my funniest 'lost' story while taking topamx (I have to laugh at these or I just couldn't go on):

I carry a little make up bag with me everywhere I go. It is about 6" long by 4" wide. I don't where a lot of make-up but I take this little bag with me where ever I go - always. It has a place in my house, on a table right my the front door, next to my keys as a matter of fact. When I leave the house I grab it where it then sits in my truck. If I go to work it then comes inside with me and sits in a desk drawer. Perfect system, I have been doing it for years with never a problem, never caught without my make-up bag. A few weeks after starting topamax I bought some new makeup (about $20 worth) and replaced some of the old and I remembered putting the new make-up in the bag and taking the old out. Then one day I went to go grab my make-up bag off the table by the door as I was leaving for work, and as you can guess, there was no make-up bag on the table by the door. I looked all over the house for it, couldn't find it and figured I must have left it somewhere and would come across it. I checked my truck, I checked my office, I checked my husband's truck and I checked the house again, even places I couldn't imagine taking a make-up bag. I asked my husband if he had seen it (my kids don't live at home and I know my dogs didn't eat it - well let me just say that when my dogs eat something they shouldn't I know pretty quickly...) After a few days I figured I would eventually run across it, that I would eventually go to every place that I might have been. However I was a bit upset with myself that I couldn't remember to save my life the last time I had seen it, all I could remember was exchanging the old and new make-up. A week went by and another. I thought about buying another make-up bag but didn't much like the idea of spending the money to fill the bag, although I was kind of tired of looking at my plain OLD face. Some more time went by. AND THEN one day I went into my kitchen... and ... opened the refrigerator and pulled out the tub or margarine and there it was behind the margarine on the shelf in my refrigerator! Now here is the thing - I know I did this, my husband did not play a trick on me (although I would like to give him credit for it). I have absolutely no memory at all of doing this, but I feel very sure I did this and I tell you this, the next time I loose something and can't find it anywhere, you can bet I will be looking in my fridge!

BlueSteam 05-03-2006 07:20 AM

Re: Calling all Topamax Users (topiramate)
DogMom, that is good! Honestly I did look in my fridge. I remember putting away some groceries that night. I did go out with my husband for a couple of hours that night so I had some drinks in me too. Great combination. I even cleaned out under my sink yesterday hoping to find them there. I went thru the trash. Mind you my husband and daughter were laughing the whole time. My truck key is a costly one. It is driving me crazy. I think I remember dropping them, but my hands were full. I used them to unlock the door of the house. We have a ten month old dobermin who thinks every thing is a toy so I have walked the property also. The problem--we have a ranch. He probably only roams around on 5 acres bus jeez. I even looked in his dog house. I'm sure he didn't swallow them--we would be at the vet by now. I thought my husband was messing with me too, but he would have given up by now and let me off. I'll just keep looking---have a great day!

DogMom22 05-03-2006 05:23 PM

Re: Calling all Topamax Users (topiramate)
Good luck BlueStream - I hate to say it but since it is one of those expensive keys my guess is the darn things will finally show up sometime after you decide to go and replace the one you have lost. Isn't that just they way. BTW - I live on a little ranch of sorts - I am in Virginia so we don't call them ranches here - we call ours a farmette - a mini farm. Anyway - I read your other posts too - we have some other stuff in common besides the topamax. It sounds like you are having a hard time getting a clear diagnosis and therefore difficulty getting treatment for the pain symptoms and belief that your pain and problems are real. I think you said workmans comp was involved so I assume an accident or something. I didn't have an accident, but I have a back problem that no doc can seem to find what the problem is, but thankfully my regular doc and now I have a PM believe me and are aggressively treating the pain symptoms. It was nice hearing about your ranch and dog - makes me not feel so alone.

BlueSteam 05-04-2006 06:44 AM

Re: Calling all Topamax Users (topiramate)
Hi DM--I remember thinking we had a lot in common also. My new pm dr did finally find some bulges in my neck that the other dr had not seen, so at least I can tell her now that she was wrong. I felt so much better with the headaches gone, but I can't seem to be able to use my arms too much without causing myself a lot of pain. I wonder if that is common. We have to put off the injection on the 23rd because my husband will be out of town. (they are going to heavily sedate me) I'm pretty used to the bulges in my lower back--I had herniated 3 discs when I was 17, so this is a cakewalk compared to that. My headaches are really trying to come back and I'm really afraid the dr is going to up my mg's of topamax. I'm at 100 right now. I take 50 at bed time and 50 in the am. It takes me until about 3pm every day before I start feeling half-way human. Some days are better than others. Yesterday I felt like I had been hit by a bus. I have worked some pretty hard jobs most of my life, for a girl, lol, then I take this job, sitting at a computer for 10 or more hours a day and I started getting bad headaches, tingling in my shoulder and my lower back started killing me. I was spending my weekends healing up just to go back to work. Finally went to the dr. My body just couldn't handle sitting. I also found out my back was full of athritis. Probably why the injury was allowed to happen. What happened to you??

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