Topamax is making me stupid (UPDATE pg 7)

[sugarpie]

I have to tell you - this thread is totally scaring me! I've had a migraine since Friday & I'm exhausted, but I've always been too afraid to take any of the preventative meds, & nothing really makes them go away once I have them. I work in healthcare & I'm a big chicken.

 

[disneymama73]

I have to tell you - this thread is totally scaring me! I've had a migraine since Friday & I'm exhausted, but I've always been too afraid to take any of the preventative meds, & nothing really makes them go away once I have them. I work in healthcare & I'm a big chicken.

Aww, don't be scared!!! :

Seriously, I am very happy with this drug. I am migraine-free for almost 2 months now and have lost 25 lbs. I have trouble finding the word I'm looking for once in awhile, but that is so worth it to me. Totally beats being incapacitated due to a migraine 4-5 times a week. Especially with three kids.

All you can do is try it and see if it's for you.

 

[luvdzne]

I was given topamax for migraines and could not bare the side affects. I could not fully function on it. It literally made me completely stupid. I couldn't think nor remember things. I was switched to Axert for my migraines and I only take it at the onset of a migrain and it works great with very little side affects. The topamax did make me lose weight though so that was a good side affect.

 

[allie&mattsmom]

Well, like I posted yesterday, I called me doctor this morning to see if he could possibly put me on Topamax so I could get off of the Maxalt and Fioricet. Unfortunately I don't think it's gonna happen. The nurse was not at all pleasant and kept telling me he already has me on something. I explained yes, but these are pain meds for when I get the migraine and I would like to try something preventative. She said I'd probably have to set up an appointment, which is fine with me, but said she'd run it by my doctor. You would think they'd want to get me off of pain meds, especially the Fioricet which contains butalbital (a barbituate). This is my family doc by the way, my neurologists keep retiring! I've decided I'm calling the Neuro group I used to go to and getting a new one.

I know some of the side effects of the Topamax sound kindof scary, like the brain fog, but darnit I'm so tired of migraines. I'm willing to try anything. Thanks everyone and I'll let you know when the nurse calls me back.

 

[Todd&Copper]

I remember about 4 years ago, my psychaitrist put me on Topamax for some of my issues, and he took me off of it shortly thereafter b/c he had read some literature about patients suffering from disassociative disorder [I think that is what he said - problems with spatial relationships - like they'll take a knife to cut a steak, and end up slicing their hand instead] and another one of his patients lost her sight. My next psych. [I moved and wanted a new one closer to my home] said she only had one patient on the drug, and she would rather be "skinny and ditzy" instead of "fat and crazy" - the patient's words, not mine or the doc's.
The side effects are probably what the nurse is concerned about. If you do decide to try it, good luck!

 

[allie&mattsmom]

Well, the nurse called back and I'm seeing the doctor Wednesday at 10:00. I'm kind of nervous b/c he gets kindof mad when he thinks you are doing "research" so to speak and trying to "doctor" yourself. Which is not what I'm trying to do! But I think he's going to be like "how'd you hear about it, what makes you think you want to go on it? blah blah blah. Then he'll lecture me that if he wanted me on it, he would have had me on it. Maybe I'll start looking for a new doctor. Wish me luck!

 

[Poohlovr]

Well, the nurse called back and I'm seeing the doctor Wednesday at 10:00. I'm kind of nervous b/c he gets kindof mad when he thinks you are doing "research" so to speak and trying to "doctor" yourself. Which is not what I'm trying to do! But I think he's going to be like "how'd you hear about it, what makes you think you want to go on it? blah blah blah. Then he'll lecture me that if he wanted me on it, he would have had me on it. Maybe I'll start looking for a new doctor. Wish me luck!

**Drags out soapbox and climbs on**

If my doctor spoke to me like that, I'd find a new one! I think most doctors realize that today's healthcare consumer is more savvy than ever, thanks to the internet and is more pro-active than ever regarding their healthcare.
Hey he's a doctor--not God. You have every right to participate in your healthcare.

An example-- I changed nuerologists a few years back, because the one I had insisted that Neurontin had to work for my trigeminal neuralgia. It didn't. He continued to insist that it had to and was not willing to try anything else. I changed docs.
The new neuro told me that he thought I needed surgery, because I was on so much medicine and was still in pain. I countered with the suggestion of a gamma knife, which is a non-invasive procedure. He said he didn't know that the gamma knife was being used to tx TN, but that he'd look into it on the internet.
Next visit--he said he had done some internet research and agreed that the GK seemed to be a better treatment and arranged for me to see a neurosurgeon that I had found on the internet and the GK was done within 3 weeks of that visit to the neurologist.

He didn't get upset that I pretty much dictated the course of action I wanted to take. He embraced my knowledge and learned something from it, himself.

Healthcare is a partnership these days; not a dictatorship.

**Climbs off soapbox and puts it away to use another day**

 

[sugarpie]

Well, the nurse called back and I'm seeing the doctor Wednesday at 10:00. I'm kind of nervous b/c he gets kindof mad when he thinks you are doing "research" so to speak and trying to "doctor" yourself. Which is not what I'm trying to do! But I think he's going to be like "how'd you hear about it, what makes you think you want to go on it? blah blah blah. Then he'll lecture me that if he wanted me on it, he would have had me on it. Maybe I'll start looking for a new doctor. Wish me luck!

I'm not trying to defend your doctor, but there are a lot of people out there who get bad information from the internet or see a commercial for a new drug & demand that their doctor write them a prescription. Your healthcare should definitely be a partnership between you & your doctor.

Do you remember that commercial with all the women lifting up their shirts to show their stomachs? It was for Zelnorm, a drug for Irritable Bowel Disease with constipation, & it's prescribed only for women. I had a patient (a man) demand that I call his doctor on a Sunday & get him an order for it, because he was constipated, too. Some people like their drugs a little too much.

 

[hemispheredancer]

I have suffered with these nasty migraines for 20+ years. After trying various drugs I gave up. I found over the past few years that Excedrin Migraine helps. Until lately. I have gotten them about 2x/week and it has gotten to the point where it effects my social life and sex life. I cannot do things with my kids because I want to sleep. I don't want to do things with my husband because I have a headache. For the most part they understand. I went to a new neurologist last Wednesday and they drew 4 vials of blood, 1 bottle of pee, an EKG and an upcoming MRI. The Topamax seems to be working well for me. I am not experiencing the tingling or the stupidness (yet!!). I still have the bad taste when drinking Diet Coke. I just avoid it and drink water. I follow up with him in 3 weeks to review the MRI and blood work. I do not anticipate anything abnormal. This is a horrible disease. DD11 has gotten a few of them and they have been to the point where she vomits. I hope hers doesn't get as bad as mine.

 

[disneymama73]

Well, the nurse called back and I'm seeing the doctor Wednesday at 10:00. I'm kind of nervous b/c he gets kindof mad when he thinks you are doing "research" so to speak and trying to "doctor" yourself. Which is not what I'm trying to do! But I think he's going to be like "how'd you hear about it, what makes you think you want to go on it? blah blah blah. Then he'll lecture me that if he wanted me on it, he would have had me on it. Maybe I'll start looking for a new doctor. Wish me luck!

I think it's all in the way you bring it up to the doctor. If you say something along the lines of... "I have a friend who was a chronic migraine sufferer for most of her life, and she's had great success with Topamax. Do you think this may be an option for me?"....he may be receptive.

Who wants to deal with that kind of pain? I got to the point that the only med that would work on my pain was Vicodin. A little hard to take care of 3 kids on Vicodin.

 

[luvwinnie]

Well, like I posted yesterday, I called me doctor this morning to see if he could possibly put me on Topamax so I could get off of the Maxalt and Fioricet. Unfortunately I don't think it's gonna happen. The nurse was not at all pleasant and kept telling me he already has me on something. I explained yes, but these are pain meds for when I get the migraine and I would like to try something preventative. She said I'd probably have to set up an appointment, which is fine with me, but said she'd run it by my doctor. You would think they'd want to get me off of pain meds, especially the Fioricet which contains butalbital (a barbituate). This is my family doc by the way, my neurologists keep retiring! I've decided I'm calling the Neuro group I used to go to and getting a new one.

I know some of the side effects of the Topamax sound kindof scary, like the brain fog, but darnit I'm so tired of migraines. I'm willing to try anything. Thanks everyone and I'll let you know when the nurse calls me back.

Wow...can you look for a new doctor?

 

[allie&mattsmom]

I think it's all in the way you bring it up to the doctor. If you say something along the lines of... "I have a friend who was a chronic migraine sufferer for most of her life, and she's had great success with Topamax. Do you think this may be an option for me?"....he may be receptive.

Who wants to deal with that kind of pain? I got to the point that the only med that would work on my pain was Vicodin. A little hard to take care of 3 kids on Vicodin.

Hi disneymama73! Your suggestion is exactly how I am going to approach it with him. I'm just going to tell him I've heard good things about it and ask him what he thinks/knows about it. And I know what you mean about hard to take care of the kids on certain meds. I've tried it all, and a lot of it just knocked me on my rear. So hopefully he'll give me the Topamax and hopefully it will work! My appt. is at 10 am tomorrow so I'll let you know!

 

[allie&mattsmom]

Wow...can you look for a new doctor?

My mom and I were just talking about this a few minutes ago. I told her I'm going to wait and see how it goes tomorrow, but if he makes me feel bad about bringing it up, I'll be in search of a new doctor.

 

[disneymama73]

Hi disneymama73! Your suggestion is exactly how I am going to approach it with him. I'm just going to tell him I've heard good things about it and ask him what he thinks/knows about it. And I know what you mean about hard to take care of the kids on certain meds. I've tried it all, and a lot of it just knocked me on my rear. So hopefully he'll give me the Topamax and hopefully it will work! My appt. is at 10 am tomorrow so I'll let you know!

I'm anxious to hear what he says. Good luck!

 

[BibbidiBobbidiBOO]

And I know what you mean about hard to take care of the kids on certain meds.

You may actually forget you HAVE kids while taking Topamax! Good luck!

 

[crz4mm2]

Well, the nurse called back and I'm seeing the doctor Wednesday at 10:00. I'm kind of nervous b/c he gets kindof mad when he thinks you are doing "research" so to speak and trying to "doctor" yourself. Which is not what I'm trying to do! But I think he's going to be like "how'd you hear about it, what makes you think you want to go on it? blah blah blah. Then he'll lecture me that if he wanted me on it, he would have had me on it. Maybe I'll start looking for a new doctor. Wish me luck!

Ooooh. I hope that he does not treat you like that.
I would find a new doc. I went to a female physician that I had met socially. I asked her about preventative meds for migraines (this was several years ago). She refused to let me try them. Said she did not believe in them. I changed doctors.
I agree that you can present your request in a less threatening way, BUT, you are a PARTNER in your health care and your care provider should respect that.

Good luck.

 

[sugarpie]

Who wants to deal with that kind of pain? I got to the point that the only med that would work on my pain was Vicodin. A little hard to take care of 3 kids on Vicodin.

Tell me about it. I took a Vicodin last night thinking - I'll take this Vicodin, I'll get some decent sleep, and I'll get up early and get some stuff done before the kids get up. Instead of that happening my kids got into bed with me when they got up and they watched cartoons while I slept. I feel like a really bad mom today. And I'm not sure what makes me feel worse, the headaches or the Vicodin.

 

[Tigger&Belle]

You may actually forget you HAVE kids while taking Topamax! Good luck!

Kids, what are those? I vaguely remember something about some kids that used to live here last year. Not really sure what happened to them.

 

[Donald - my hero]

Doc put me on topamax to help me sleep & curb the weight gain from my other meds -- would you believe that I have actually been told that it is better to be FAT then dead?

Anywho yes I lost weight -- about 30 lbs but mainly cause i didn't feel like eating ANYTHING! I would make a meal-- if & when I knew where kitchen was -- and then once it was on my plate all I could manage was about 2 fork fulls and then had to get down.

Worst problem ... shaking. Hands shoke feet wiggled and HEAD looked like it would fall off. Oh and now that I have stopped it --- yuppers gaining weight back URGH

 

[allie&mattsmom]

Hi everyone. My doctor visit went very well. He was great about letting me try the Topamax. I just took my first 25 mg tablet. I'm supposed to stay at that for at least a week, and let him know if I don't think it's working, then he'd bump me up to 25 mg twice a day. He said he's got several patients on Topamax that are having good results. He told me about some of the side effects, mentioned the change in taste and that some people lose weight. Although it would be an added bonus to drop 10 pounds or so, I'm sure it won't happen to me. Unfortunately, it takes a lot for me to lose my appetite!

Thanks so much to everyone for all of the information and especially to disneymama73 for starting this thread! I have new hope to be migraine free now!