Topamax advice

Good evening,

Four weeks of nori, 10 mg a night, have given me mixed results. Head tingling and eye pain mostly gone, but imbalance related to motion still exists. I have never had a headache with the MAV, mainly weird disequilibrium. My neuro was thinking about upping thee dose to 20 mg, but has found that my resting heart rate has increased 25-30 bpm since I started the med. An event monitor from last year showed I have occasional PVC and PACs, also. He is considering taking me off and trying Topamax, 12.5 to start, moving to 25 mg if symptoms improve. I do have some family history of kidney stones, so he is not quick to make the change because he is worried about the kidney stone risk. I had my gallbladder out due to stones, and I will admit, the pain of stones is to something I do not want to encounter again. :smiley:

Has anyone out the had this type of reaction from Topamax ? I know everyone reacts differently, but I wondering how frequently this side effect has affected low dose users. I am pretty med sensitive, took verapamil years ago and it caused a heart arrhythmia, so Topamax is the next option. Any advice, comments from current or past users?
BTW, having an MRA /MRV tomorrow to check for circulation issues, also.

Thanks for your help!

Jen

I don’t recall reading anyone posting here about Topamax related kidney stones since I’ve been coming to this site.

But since I’ve been on it, I’m very careful to stay well hydrated because I’m aware I’m at increased risk.

I read online under topamax that if you use it for at least 2yrs that most if not all will develop kidney stones. I thought that was kind of an odd statement to be so sure of that. But that was on the actual topamax webpage.Not sure of the dosage on that statement. But you may want to look it up.

I have a mild case of tachycardia and I noticed I got a little short of breath now and then, but who knows that could also be from not working out, as I used to go to the gym 5 days a week and I do not now. But shortness of breath can be a side effect of topamax.

Good luck, I wish I could have continued on it. Loved the NO Appetite side effect :slight_smile: But it made me dizzy above 25mg.

K

I did look it up. I went to the Topamax site myself to check out this notion that if you use it for at least 2 years “most if not all will develop kidney stones” - you must have skimmed something because you came away with some incorrect info.

I’ve been on it over 2 years and would never have taken something for this long if it had such a high risk of kidney stones. I read the Full Prescribing Information before I started taking it, and went back to take a look again today. I didn’t think the data could have changed THAT much since I first read it.

At the 100 mg migraine dose, studies showed that 1% of people taking Topamax developed kidney stones.

At epilepsy doses, like 400 mg, the percentage of people taking Topamax who developed kidney stones goes up to 1.5%, which is about 4 times the general population’s risk of developing kidney stones.

Topamax does increase one’s risk of kidney stones above that of the general population, and if you already have a predisposition, there is reason for added caution. That’s why I keep well hydrated, and be sure to carry a cooler with me if I’m going to be in the car for any length of time.

I maybe mistaken about the actual website. But I look at the ones that compare placebo effects and all the treatments the med is used for.
And it did say, after 24 months that most will get a kidney stone. I know what I read. I do not go on the no name websites. So I know i got it from a reputable one. Maybe the info is wrong, but I do know I didnt skim over something. Other sites indicate 1 out of 32 on 50mg to 200mg got a kidney stone.

Thanks for the tips! My doctor is going to have me stay on the 10 mg nori dose for at least a few more weeks to see if the side effects wane. We’ll reevaluate then and possible switch to Topamax.

He said my heart is in good shape and that is possible that the high bpm rate will adjust with a few more weeks. I am going to give it a shot, along with the vitamins (D, B12, Coenzyme Q) that he recommended.

I appreciate your responses!

I’m not sure about the kidney stone side effect. I’ve only been on Topamax since June and had a couple UTIs since then, which is not common for me so I’ve been wondering if there is something to that but I’m just watching it and trying to keep up my water intake.

There are a lot of meds to try, so if you’re concerned about Topamax you could try something else. I’ve had good success with SSRIs and I know others on this board have as well, so if Nort doesn’t do it for you, maybe try an SSRI?

I also have frequent PVC confirmed by holter monitor and have been taking 400 mg magnesium daily for quite some time now. I notice that the PVC are very reduced if not eliminated with the magnesium addition. You might want to add that to your daily supplements. Studies show that 400 mg magnesium and 400 mg riboflavin (vitamin B2) daily reduce migraine. And CoQ10 is a great supplement to add too.

Thanks, Anne. I am definitely adding the magnesium, CoQ10, to the B complex I started a few weeks ago. My doc also noted that my blood draw showed extremely low vitamin D, so he gave me a once a week 50,000 mg vitamin D to take this month. As I left his office he told me the best thing I could do would be to take a vacation, get some sun, and relax. That’s the kind of prescription I want. :smiley:

— Begin quote from “Jenjakeusa”

Thanks, Anne. I am definitely adding the magnesium, CoQ10, to the B complex I started a few weeks ago. My doc also noted that my blood draw showed extremely low vitamin D, so he gave me a once a week 50,000 mg vitamin D to take this month. As I left his office he told me the best thing I could do would be to take a vacation, get some sun, and relax. That’s the kind of prescription I want. :smiley:

— End quote

Thats what I was told! lol
My vitamin D was low as well, but the doc said wasn’t low enough to do anything. Mine was 28. do you know what yours was?

I had a low vitamin D level too–it was 9 when I was tested and I was also given teh 50,000 UI prescription but I decided to take 5,000 UI a day instead. My levels finally got back up to 50-75 and have stayed in that range. I now take 1-2,000 UI a day. It’s not uncommon for people in Seattle to have low D so my doctor said to take this level daily to keep levels up.

Low D levels can cause weird symptoms, so some of the things you are feeling may be because of this. It also can predispose you to depression so keep that in mind. Another supplement that is good to take while bumping up your D level is Omega-3. I like Coromega gel packs and they have one now that includes Vitamin D.

Isn’t it amazing how much better the sun can make you feel? I always feel so great while on vacation in sunny San Diego! :slight_smile:

Kristen- sorry, I actually do not remember my level. My doc felt that is was low enough that he need to give me a “vitamin blast.” looking back, I think my D has been low every time I’ve had a blood draw.

Anne-The weather in Salt Lake City definitely does not help with vitamin D deficiency. I spend 2 weeks in Costa Rica in the summer, and I feel great while there. :smiley: I am going to start with the vitamin d in the morning. I will also look into the Omega 3.

Thanks for all the tips, have a great weekend!

Jen

Maybe we should just all meet up… Hawaii anyone…?? :smiley: