Topamax Side Effects

[bkgrrl]

I'm back with another question :-). DS is 11.5 yo, recently diagnosed. He was put on topamax and imitrex for migraines which are supposedly unrelated and are what sent us to the neurologist in the first place. Migraines continue, some tingling in hands and feet, which is likely the topamax. However, today he had a migraine (been on topamax just over three weeks). Once it wore off I took him to school. Got a call form the nurse about an hour later saying that he blanked on his math test, couldn't remember anything they worked on in the last week or so. I talked to him, he was really upset so I don't think he's faking. I made him take the test anyway - that's just the kind of mom I am.

Anybody else with side effects from topamax like this? Anybody else think it's not really working for their migraines? Imitrex doesn't seem to help him - as long as he sits up, it goes away at about the same time as sitting up with the Imitrex.

Gah. If it was me, this would be a lot easier.

[burdzmom]

hey there.....so sorry your DS is going through all this. as if he doesnt have enough stress with being a growing boy with kids and school and other stuff - shesh...... well - to put it simply, Topomax made me stupid. dumb as a door nail. i couldnt remember anything! it was horrible! i was a police officer for 10 years and couldnt remember my locker combination to get dressed for line-up. . . . i was on a car stop and forgot where i was. . . looking around and recognizing landmarks but couldnt remember street names ( all while i had been driving these streets my ENTIRE LIFE!!) so - your poor son seems to be experiencing something very similar to what i did.  My neuro at the time told me that was a possible side effect. Believe him. He may not like math, but i dont think hes making this one up.


Good Luck with everything.

jilian

[bkgrrl]

Thanks for the info! He is seeing Dr. Menezes in Iowa City, so he's in good hands. We backed off the topamax a little and that seems to help. He had two migraines right away but none since, so we might be able to taper back even a little more.

[n40066]

i was put on topamax after my surgery...i was in an mva and the headaches started up again.  it worked really well for me!  it did not eliminate the h/a, but made them easier to deal with.  i did notice i was was not as sure of myself as before and questioned myself quite a bit the longer i was on it.  
first thing i would suggest, is to take your son to a chiari specialist.  if not a specialist in this field, drs have VERY limited knowledge of chiari and it's symptoms.  they tend to discard the cm dx all together and look for other causes of the problem.  this process will prolong your son getting the proper treatment that can help him!!
good luck, mom....it's a tough road to travel, but you are not alone!
elizabeth

[selmaS]

well what u say makes sense..got to give u that....hmmmmmmm

I just have to figure out if I can deal with this fatigue....

[sanukilady]

Maybe Topamax just adds on to the fatigue that we may already be experiencing with the chiari or brainstem-related issues.  Fatigue has also been described to me as a by-product of cognitive overexertion--when your brain is working overtime to concentrate and perform higher-level operations.  This occurs during periods of vertigo, for example.  Most of one's cognitive functioning is devoted to reorienting oneself in space.  

If topamax impairs concentration, recall, or these functions, one would become tired more quickly than a person not taking the medication, although the drug would be fulfilling its intended purpose (preventing migraine/seizure or decreasing intracranial pressure).

[selmaS]

It seems the longer I am on it the more tired I am feeling....I was extremely tired when I first started it, but then I felt really good, now I can not tell if it is  helping me .....and I am always tired....

[sanukilady]

Topamax is also used to prevent seizures.  Recall is one potential problem, and falling asleep is another.  I think that there is a period of acclimation and every person tolerates it differently, but I can see a medication like Topamax affecting a student's classroom performance.  

[bbisweary]

Selma,

I'm sorry, I don't remember the dosage.  I threw them away after taking them about two months.  My symptoms seemed to intensify rather than lessen after time.

[selmaS]

May I ask what dosage of the Topamax were u on?.....I am on it just 3 months now and I wonder if it is the dosage.....

"selma"

[bbisweary]

Hi, I was on Topamax and had virtually no word recall.  I couldn't be trusted at work to enter things in databases and I accidentally deleted a Governmental Calendar of Events while suffering from the effects. I couldn't make decisions or use basic reasoning skills. That med is too strong for some of us.  ALSO, BIG WORD OF WARNING FOR ALL...DON'T TAKE ZONAGREN IF YOU ARE MEDICATION SENSITVE. I was given zonagren for seizure-type spasms (dystonia), and it had me so depressed that I believe I could have been suicidal.  We finally realized the medication was causing the depression.

[youngwife]

A friend of mine and two of my daughters have taken Topamax.  ALL of them have experienced this symptom.  It is real, and it is very frustrating for the patient.

Rebecca
Mom of six, two having been diagnosed with Chiari zero

[kccostello135]

I have been on this medicine for two years and the side effects have gotten worse for me. I feel like a stroke patient, I did run a 2 million dollar company three years ago before I was hurt and I can not get rid of these headaches I have everyday. I can look at an item that I know what it is I know the word and can not get it out. I can not remember how to drive somedays, so I don't. I can not hold on to things so I can not grocery shop by myself I am worried I will have a muscle spams and knock someone out with a jar of mayo. My vision is getting worse did have 20/20, my bones are weaking and now I have arthritus. I would not recommend this drug to anyone, I am going to my Doctor to get off of it. I still have my headaches everyday all day they never change. I have spent two years of painfull test and procedures they have said they can not do anything to help me. Good luck to those who take this medicine I hope your side effects don't get this bad.

[lilmiss1999]

I was on Topomax for quite a while and I blanked out on stuff. I was at work and completly forgot how to do a task. It is very scary. Its like the file you have in your brain is not there. Not lost for a moment.....Just not there. It was temporary. It did not help my headaches either. Nothing has so far. Mine are most everyday. Wake up with it and go to bed with it. Then I have flare ups a couple times a month. Still no diagnosis from any doctor. Tell him to hang in there and you too. It does get better the more your body gets used to it. What is his dosage and when does he take it. Might be a good idea to split it up several times a day. That is what I had to do.

Jennifer

[selmaS]

well I have not experienced that since starting the topamax, but have had the issue as a result of chiari b4 surgery and have had it occasionally since...

I wish I could tell u more, I am just too new to the med myself and the fact we all will respond differently...

"selma"

[bkgrrl]

He hasn't seen the NS yet...both family doc and neurologist assure us that he's asymptomatic and has "plenty of room" in his skull. I assume the tests beyond the basic MRI will happen if the NS thinks it's necessary. However the only reason the neurologist did the MRI was because he "doesn't like morning headaches" and that's all he gets - migraines upon waking. But yet he says they are unrelated to the Chiari.

His headache was gone before the test. He actually said he literally couldn't remember anything they'd learned recently, but older stuff like basic math he could remember just fine. He's never really had the problem before Topamax.

[selmaS]

Hi...I am also new to Topamax and it took a few weeks to adjust, and I had a HA the other day...not sure I could have taken a test with it, It does take time to adjust....even my IBS issues seem to finally to be calming down a month after starting this med.....that said, the test issues could be the underlying issues...the med is to help with pain, it is not to help with the cognitive issues and brain fog we get...and I must admit, the fog got worse when I started this med, but it did lift....

...the sitting up and feeling better makes me wonder about inter cranial hypertension....has he been checked for this?

Meds affect everyone diff....so u will have to take his word for how he is feeling....

"selma"