Topamax

Hi Sara,

when I read your post about topamax and the side effects I felt like I was reading my own writing. I first got put on Topamax 50 mg and it really helped my headache. Then I got a tolerance and was put on 75mg then 100 mg. My headaches were becoming less frequent but I was starting to feel weird. I lost alot of weight which I loved but like I said I didtn feel all there. I noticed that I wasnt able to remember something that happened 2 mins ago, I had trouble speaking ( my words got all tongue tied), I just always felt out of it. I had alot of trouble in school this year being on Topamax, My boyfriend even said he noticed a change in me. So unfortunatley I had my doctor take me off Topamax and Im trying to see another doctor. but I just wanted to let you know you werent alone in the side effects you've been experiencing. If you have tried any other drugs that have helped you let me know!

Teen...

I have heard a few people say that same thing...they lovingly call it "DOPAMAX"...I have had better luck with it than anything else and I can stand to lose a few pounds,...so I am going to try to stick with it for a while and just hope that everyone loves me while I am stupid!!!  ha ha

I am a little scared of the kidney stone issue...I had kidney stones last time I was on Topamax...I AM NOT SAYING TOPAMAX CAUSES KIDNEY STONES..I am saying that I have a history of Kidney issues, and that the dehydrating factors (in addition to others I already have) contributed to formation of kidney stones...and I am not looking forward to that again

ok, I have to run....

Just wanted to pass that along!

Sara

hol1234- See my post specifically answering your question...under the other thread...

Thanks,

Sara

Hi Iyanlamar,

I am taking Topamax and have struggled with it. If you see some of my other posts you will see the long list of side effects that I suffered initially. I have found through many struggles with medication that I am very sensitive to medication and Topamax seems to one that has extreme effects for me.

I have been suffering from vertigo, though no one has related it to the migraines. I get nausea with my headaches but not the dizzyness and feeling as if I can feel the world spinning. I find that this usually is related to a medication I have taken -- though I have no medical training just lots of medical experimentation at the hands of my medical professionals .

My primary pain killer is Tylenol 1 - Tylenol with 8 mg of Codeine and Caffeine. Codeine causes nausea and can cause vertigo especially if I get into a moving vehicle or watch a 3D movie. Coming off Neurontin (another anti-epileptic) too quickly caused extreme vertigo and Topamax caused vertigo with extreme nausea at the beginning.

My experience with Topamax was that I increased my dosage too quickly. Once I realized the cause of my symptoms, I decreased the dosage, which caused withdrawl symptoms, more nausea and vertigo. I knew I had found the right dosage when the nausea and vertigo stopped, for me it is currently 75 mg. It took me 3 weeks at that level for the side effects to stop and I'm not sure if the migraines are better yet. My neurologist feels strongly that it will work which is why I have stuck with it.

Someone on this site recommended staying at the dose you're at until all of the side effects stop and then increasing. My doctor felt it was occur to increase 25 mg weekly. That didn't work for me. It looks like 3 to 4 weeks is going to be the time I need to stay at a dose before increasing.

I haven't had enough success to give you the advice to stick with it, but perhaps my experience can help you find a way to stick with it and minimize the side effects.

If you do decide to stick with it I found that peppermint tea and peppermint candies soothe the nausea (if that bothers you as well). I found that lying flat on the bed with a really soft pillow made the vertigo better. If I couldn't eat I found that I would get headaches from hunger and so drank gatorade, didn't make me nauseous. I stayed away from elevators because that made the vertigo worse. I also found alka seltzer helped settle my stomach and sometimes provided a little pain relief.

Good luck. Let us know how it goes. You're spirit is broken, this only makes you stronger! You're doing something about it, feel good about that.

 Hallaluyah!!!  I'm not going to call Topamax Dopamax anymore!!!  I stuck it out, and switched my mid-day 2mg dose of Klonopin to bedtime, and TAH-DAH...Brain seems to have come back from the ozone!  I really haven't had any other noticible side effects to speak of, and the jury is still out on whether this will actually reduce the number of my headaches. 

My big trigger is weather/environmental changes, and this has been a horrible summer for constant storm after storm.  My headaches have been really bad since the January.  I'm currently on 200mg of Topamax.  I was already on Effexor and Wellbutrin, so I didn't have to worry about that component. 

I've had migraines my whole life (I'm 40), and have literally tried just about every drug through the years.  Some have worked for a while- then stopped, some never worked at all, and some made the headache seem like a better option.  Done the Pain Clinics, done the Neurologists, GPs, done it all.  Best treatment I've had in a long time is coming from a Nurse Practictioner.  Hell, her senile old boss wanted me to take 1600mg of Topamax!!!   Can you imagine what that would have done?  Pretty scary.  Right now I use Stadol Nasal Spray if I can catch the headache right at the beginning.  That usually gives me a fighting chance to abort the headache, otherwise I'm screwed.  I'm having to resort to pain shots probably once a week.  At this point, my pain tolerance is really high, have gone through just about everything, narcotics are pretty much the only thing left that will give me any relief.  Last year, I was in the ER with impacted kidney stones.  They dosed me up with morphine, and I couldn't even tell the difference.  They had to up me to dilaudid to back the pain off.  I now have to carry around a whole list of all the medications I've taken, when I took them, why I can't take them now, etc... just so I can demonstrate to the doctors that I not a "drug seeking" addict.  Of course, I always drag my dad along, which doesn't look bad either.  Oh well, enough of my rambling.

JUST GIVE TOPAMAX A CHANCE!

Leigh Ann

I'm a fellow Topamax user, new to the HW forums.  I take Topamax for Migraines (firstly), Occipital Neuralgia (ON) & Trigeminal Neuralgia (TN).  It wasn't until the Topamax got my Migraines (Status Migraine) under control that we (the doctors and I) realized there was something else going on. 

*I was still having severe head pain that was not Migraine pain, the pain starts at the back of my head and ends coming down right above my eyebrows.  It actually triggers Migraines if I don't treat it; and ignoring it is impossible since the pain is so bad it brings me to my knees, bawling, screaming in agony.

A wacko Neurologist started me at 50mg of Topamax the first night, then 100mg every night there-after for the first month.  Needless to say, I was a vegetable, unable to sleep at all!  I was basically incoherent, I could not remember my kids' names, my own address or phone number.  I walked into walls, stumbled when I took steps and sat at my desk all day staring at nothing at all.  I had NO motivation, ambition or interest in life...and during that time I was dealing with the AGONY of having a Migraine for 6 weeks straight.  I was on high dose steroids and oral Demerol and Phenergan to break the cycle.  **Thank Goodness**I've been taking an antidepressant for several years...I can't imagine what would have happened had I not been taking one since Topamax is known to mess with your head when first adjusting to it.

I'm now at 300mg of Topamax a day, split into two doses of 150mg once in the morning, and once around 2pm.  Unlike others, I need to take Topamax during the day because it WIRES me.  I still get 9-25 Migraines a month, but they're SO much more tolerable.  I can function and do housework with one, it's mostly the Aura that bothers me then I just get a dull ache which I have abortives to treat that with.

I've lost 30 lbs in 5 months.  I went from a tight size 14 to a size 8 (I'm 5'10").

I can't complain about any ill side-effects.  The only complaint I have about Topamax isn't really about the Topamax--it's about the way it was initially prescribed for me.  Hence, the reason I no longer see that Neurologist who didn't have the patience to start me on the medication properly.

The MOST IMPORTANT item when being prescribed Topamax is remembering to drink WATER WATER WATER! (Divide your body weight in half, then drink that many ounces in water each day--for instace: I weigh 140lbs so 140/2=70 so I need to drink 70 ounces of water a day.  So, I drink 3 24 oz water bottles with the sports caps each day).  Topamax is processed through your Kidneys (as the other posters have also stated) and make sure you keep your electrolytes in balance.  I keep Propel (from the makers of Gatorade) stocked in our refrigerataor and drink at least 1 20 oz bottle a day.  This ensures I get plenty of fluids, plus some!

Anyhow, sorry for the long intro and book I've just typed.

Great site ya'll have here!  Hope to see more of you around, Here's to more Migraine free days for all!

 Hey Stacy1,

I'm glad you are getting some relief from the Stadol NS.  I had never heard of it until an ER doctor gave me an injection of it for a really bad migraine.  Seems these days all doctors are skiddish about prescribing anything of a narcotic nature, but if you are lucky enough to find something that will give you relief for your headache, then you have to fight for it.  Keep a journal of your headaches so you can show your doctor just how often you need the medication, and be sure to include lots of details.  Maybe you could have a back-up medication like Lortab or something similar that lasts longer, it the headache returns after using the Stadol a couple of times.  Migraines are serious pain, and if your current doctor will not prescribe the appropriate medication(s) to control your pain satisfactorally, then you need to pursue finding another physician.  In other words, dump the ******.  Also, it never hurts to do your research.  The internet is a great source of information on migraine pain and pain control.  Take a look at the www.magnum.com, and at www.migraines.org.   I have a notebook of all the different medications I have tried over the years, with notations as to why they did/didn't work, and why they are not appropriate for me to take now.  Everything from preventatives to painkillers.  This is very useful when I have to see a new doctor.

I also had the memory problems from taking Topamax, but they have finally subsided, thank heavens.  Depakote didn't do a doggone thing but give me an eating disorder and I gained 80lbs in about 8 months.  So far, I've lost 30lbs on the Topamax and think once the rainy season is over, my headaches will be much better controlled.

Hope this helps, and let me know how you are doing.

Leigh Ann

Hi Pegasis,

Thanks for your thoughts and I'm with you waiting for a week free of Migraines. My neurologist has me keeping a headache diary and I'm tired of writing down four times a day that I have a headache, but hopefully it will help.

This is my last round with Topamax and Botox. As you saw on my other post, I'm seriously considering drug free. I'm struggling with stopping the pain killers so I'm not sure how I would stop everything but I'm tired of the constant pain. The doctor feels without the analgesics the Topamax will work a lot better - sorry I may have said that before, memory is not working well today.

Thanks again. I always enjoy reading your posts.

I too have dizziness/vertigo along with daily headaches...

MRI came back fine - still trying to figure out the problem...

 

I am new. I just started topamax today & started Lexapro again. The last migrain med. I was on was also a antidepressant so I stopped taking the Lexapro. But I gained a lot of weight in the 2 months that I was on the new meds. So now the Nuerologist gave me topomax to try. SHe told me that it may help with my depression but I have decided that I will go back on the lexapro cuz I need to know that I am taking something that works. I have noticed that most of you are taking a dose in the morning & in the evening, I was told to take it at night. I was also told to increase my dose after a week but after reading this thread I think I will wait untill the side effects are gone. Have any of you started both the topamax & an antidepression med. at th same time? Im wondering if the side effects will be even worse since I am starting 2 meds at the same time. Does the fogy brain & loss of memory only happen at the higher doses or is it also at the lower doses too? How long have you been on the topamax before you started loosing weight? Sorry about all the questions, but I sure would like your input. Thanks in advance.

I have been on Topamax again (this is my 3rd try at it) and I am taking myself off of it, this time for good! I am up to 50mg, twice a day and it is not touching my migraines. Every time I try it I end up with the same side effect eventually. I start feeling so bad all over and so sluggish that I feel as if it is all I can do to put one foot in front of the other. My problem is my neuro. I am going to have to find another one nowl For some reason he refuses to believe that the Topamax could have anything to do with my feeling that way, even though I have documentation to show exactly at what point it has occured each time I have taken the med.

Hi!

Topamax worked well for me for say 8 months, now the migraines are back.  Am I the only one in that situation? If not, did increasing the dose improved ? The sides affect are not so nice.  I'm down to 90-95 lbs. I get a bit depressed sometimes but get back on my feet real fast since I know it is the topamax effect

Many thanks!

Hello,

You might suggest to your sister that she increase her potassium intake to cut down the muscle cramps. My neurologist says the tingling and muscle cramps can be caused by low potassium. Muscle cramps can also be caused by not drinking enough water. She can increase her postassium intake by eating bannanas or with a supplement.

On a separate note, are you taking a lot of over the counter medications in addition to the Topamax? I haven't had a lot of success with Topamax and my neurologist thought it might be because of rebound headaches. I am weaning off Tylenol with codeine and am starting to have success with the Topamax - just a thought.

Good luck!