Anyone on Topamax?

[ame]

is anyone on Topamax? Have you noticed a drop in your immunity since being on it? I have had the "super flu" and/or the "death plague" for like a month and a half now and cannot seem to fully beat it. Just when I think I am there, and head back to work, I am back out again. I got my flu shot Friday at the doctor office, assuming I was back to normalish, and by that night I was at 101 fever. Over Saturday and Sunday I was running 102. I NEVER have fevers, and never in the 100s, let alone 102. A normal body temp for me is like 96, so like...dead. I was freaked out. I assumed I was just weakened and that gave me a reaction maybe? I don't know. But I've been sick for the better part now of a month and every doctor has said "its just a virus, and it has to run its course". Frankly, I am of the school that "its just a virus" is the ultimate insurance billing scam to get more visits out of you and your insurance, so I don't really believe in that. And that's mostly from past experience, as two offices I used to go to, that was their way and both got sued and prosecuted for it. But I have gotten so far behind in my life and errands and STUFF, that I am never gonna get back ahead.

I did some poking online and found that this drug has had an effect on some people by lowering white cell counts...and I am wondering if that's possibly whats going on here, and that every *thing* I encounter I just get hit with.

So I thought I'd ask.

 

[Puppmom]

Ame, not on Topamax but my friend's children recently had the flu, seemingly recovered and had identical symptoms just a few days later. I wonder if it's not the strain of flu? Whatever it is, I hope you feel better soon!

 

[ame]

Ame, not on Topamax but my friend's children recently had the flu, seemingly recovered and had identical symptoms just a few days later. I wonder if it's not the strain of flu? Whatever it is, I hope you feel better soon!

Thanks! Its just like...won't go away. And in the middle I got what I thikn was food poisoning from what I believe was a yogurt parfait (ew) and just again as I got over that BAM this again. I am just hoping DH does not get it. I know one coworker has this nonsense already. I just ran around here with lysol again, and I've been wiping phones down, every keyboard and mouse, desk etc.

 

[AprilBaby]

I was on topamax for a year for migraines. It actually worked well. I went off for two reasons. First, everything tasted awful, especially diet coke. ( not that it's a bad thing!). Second and more important, I got severe kidney pain two weeks in. I told my GP and he swore it was a pulled muscle. After many drugs, chiro, PT, surgery, X-rays, Ct scans... I was swearing all along it was the drug. I got fed up and went off. Within 24 hrs the pain stopped and never returned. In rare cases it causes kidney crystals to form. I am apparently rare. The pain got excruciating over time. The migraine was more bearable.

 

[ame]

I am not on it for migraines and I cannot just quit it, so I have to deal with it. I don't have kidney pain at all with it. But I do think it's lowered my immunity a little more than I'd like.

As for the soda and taste thing...yes it's DEFINITELY altered the way things taste and that definitely blows.

 

[Maisie]

I've only had the flu once and it lasted about two weeks. I hope I never get it again. It was awful. I hope you start to feel better soon.

 

[Kaleigh]

I would get a blood test. See where your white blood cell count is, and do another test to see if anything changes. I had one friend that took it for Migraines, but couldn't tolerate it for the long term. Her immune system wasn't compromised.

 

[House Cat]

I've been taking it for six years. No immunity issues for me. I've had other issues and noticed that if I backed my dose down a little, the side effects subsided. Then I was able to slowly increase my dose by 50 mg until I was back up to my (almost) prescribed dose. Honestly, I was prescribed 300 mg right off the bat and I had to back it down to 50 mg and then slowly (over a period of weeks) get it up to 200 mg. That is where I am comfortable. Anything more, and I experience side effects.


I take it for Bipolar Disorder and Migraines, but it isn't my main mood stabilizer. It does do a little for mood stabilization, but it's more of an adjunct. Its main purpose is to keep me from gaining 100 pounds from my other med and to keep my cluster migraines away. For this reason, I am able to play with the dose a bit.

If I were taking it as stand alone therapy for seizures, I wouldn't mess with dosing unless I were in close contact with my doc.

My side effects were dehydration, constipation, difficulty with word recall, and memory issues. I would also have horrible tingling in my hands and feet, but that's a sign of potassium deficiency, caused by the med and bananas help with that.

 

[AprilBaby]

I did get the tingles at the beginning, that abated after about 3 months. My highest dose was 100 mg. I also had a really hard time with memory and thinking, I felt in a fog most of the time. I lost my appetite but never really lost weight. I heard it was going to be approved combined with another drug for weight loss.

 

[KaeKae]

Very interesting question, ame.

Last fall, my 16 year old daughter was sick for weeks with "a virus that has to run it's course." We talked to the four pediatricians in our office,a neurologist, a dermatologist, and even her orthopedist (we just happened to have appointments with the last two.) She was exhausted, with horrible headaches and a low grade fever, if I remember correctly. She was missing so much school, that we took her out of the high school and put her on independent study. This started in late September, pulled her in mid October, she finally started feeling better late November.

Thankfully, she was able to go back to her own school when the second semester began in January. What I never thought about was that she had tried a low dose of Topamax starting in late August, I believe, to help prevent migraines. We took her off sometime in October, in an attempt to simplify the meds she was taking, and since it didn't seem to making a difference in her migraines, anyway. Now I have to wonder if there was a connection to the Topamax.

 

[ame]

I started at 25mg and went up 25 at a time til I got here, so it was definitely in small steps. But I do wonder if this drug had any impact. I see the neuro in a few weeks so I might address it to him.

 

[AGBF]

I've been on it for migraines for years now. I have kidney problems of which my neurologist is aware and neither he nor my (excellent) nephrologist saw any problem with my taking the Topamax despite the kidney problems. I have had no immunity problems. I got sick constantly back a couple of decades ago in my 30's when I was under a lot of stress in my marriage and trying to get my husband to adopt a baby. I was sick all the time. Every time I travelled to a foreign country I got a virus.Two trips to Colombia: diarrhea and vomiting. Trip to Israel: hospital because nausea was so severe. And so forth. But I was not yet on Topamax back then! For the past decade or so I have gotten ill very rarely.

Deb/AGBF

 

[AprilBaby]

Like i said, the kidney pain is VERY rare, but then again, if there is a problem, I am always that rare person.

 

[Skippy123]

Like i said, the kidney pain is VERY rare, but then again, if there is a problem, I am always that rare person.

that is me too; my husband tells me I am the 1 in a million. Gosh, this medication sounds awful; I think you can report adverse side effects to the FDA! I have not taken it ever nor know what it is for. I think you can call them too http://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/Surveillance/AdverseDrugEffects/default.htm

 

[AGBF]

Like i said, the kidney pain is VERY rare, but then again, if there is a problem, I am always that rare person.

that is me too; my husband tells me I am the 1 in a million. Gosh, this medication sounds awful; I think you can report adverse side effects to the FDA! I have not taken it ever nor know what it is for. I think you can call them too http://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/Surveillance/AdverseDrugEffects/default.htm

I haven't checked a PDR, but I'd bet real money that every symptom on earth is already covered. This med has been around forever. It was, I believe, originally used for seizures but it has been used for everything but the kitchen sink since then and everyone and his brother has been on it for some reason or another. I kid you not! Both my daughter and my niece have been tried on it for totally different reasons, just to name a couple I can think of offhand. I am sure that there is at least one reported case of every single thing in the world listed in the warning information, which is how they do it, as a possible side effect of Topamax. And those don't even include the usual side effects everyone expects of tingling appendages and (temporary) memory loss! I haven't remembered anything in years! This drug is sometimes called Dopomax for making people into dopes-or Stupomax.

Deb

 

[ame]

I got some bloodwork back and my whitecell counts are halved from before I started it. I don't know if it's the drug or if it's the illness. But I did ask how to fixenize it if there is a way. It's not something I can stop taking, or just quit easily. I will have to switch meds after being weened off. I will be on it or sometihng similar probably forever. And not for migraines, that would be a nice, easy thing though, sadly.

 

[steelmagnolia]

I've been on Topamax for years as well, at varying dosages. My immune system isn't the best anyway, but I haven't noticed it worsening since beginning the med. Every other crap side effect, yes!

It's also a possibility that you've gotten more than one virus, either superimposed upon one you already had, or another one moved in just as the other was beginning to improve. With 5 kids, I've had them do that and pass it along to me as well, especially when they were younger and building up their immune systems. Recovering from one and in comes another, with no clear delineation between them, other than sometimes the symptoms were just different enough for me to notice that it wasn't quite the same illness the entire time. Also, I don't care how many times I've been told that the flu virus doesn't have the ability to give the flu, it sure as dog makes me have flu symptoms every time for a few days after the vaccine is given ... every single time!

Hope you get to feeling well again soon!

 

[PS34one]

Ame,
I don't know it what I have to say is much help at all. I have been on topamax for about 2 1/2 years. I take 100mg a day for both migraine and as a mood stabilizer in combination with another medication for Bipolar disorder. I have not had any side effects on the Topamax thankfully. I have heard about the kidney stones and I believe that is why they say to take the medication with lots of water. Also alot of people say what the other poster said about "Dope-a-max", but i never had those problems. If your not having any other known side effects, you may want to consider getting to the bottom of it before going off the Topomax. I am just thinking if that is NOT what making you sick and you just have a virus it could be a good medication for you. Are you still increasing? 25mg sounds like a small titration dose but I could be wrong. I do hate to hear that you are so sick, especially if you think it might be your new medication. Starting and stopping is always very scary, I completely understand. That happened to me once when I had a bad reaction to a new medication and it was the worst experience of my life. Hopefully your Doctor is helping you navigate and available for you when you need them. Did they suggest alternative medications and what are the possible side effects VS Topamax?

 

[Amber St. Clare]

I take 100mg twice a day for a bit of OCD. I'm also bipolar. I haven't had any immunity problems that I can attribute tto that particular medicine, but I came own with {severe} RA in my hands and had to go on injectibles which really wreacked havoc on my system and had to stop them. The only side effect from the Topomax I noticed was a bit of "spaciness"--my dr. jokingly called it ""Dopomax"--but it quickly went away.

 

[ame]

If I had to pick one side effect that bothered me the most it would be that most foods taste...off. Not just soda, but everything is off. Nothing tastes the same anymore which is mostly good for my weight lol but generally disappointing. Former favorites are not the same anymore.

Otherwise, just so far this perceived immunity issue.