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davnic13

combination of lamictal and topamax

I developed epilepsy 9 years ago, i was on epilim for a number of years unsuccessfully, and have been on
lamictal for the past 4 years, i am on 400mg. I was still having seizures and went to see my neuro he added in 200mg of topamax which i have been on for the past 4 months but my seizures
have increased and have gone from nocturnal to during the day (complex partial). My neuro
is now gradually increasing my dose to 400mg. My condition seems to be
getting worse rather than getting better since i started on the topamax
and im wondering if the increase in dose will help or just lead to more
seizures.

He then suggested at the end, if this doesnt work he will reccommend that i go to the epilepsy clinic, where they will take me off all my medication and wait for me to have a seizure then do some tests and scans, to see if im a candidate for surgery.

I am wondering has anyone else been on the same dose 400mg of lamictal and 400mg of topamax, and has it helped? The thought of surgery isnt pleasant!

My neuro also hasnt performed any blood tests for my medication levels, i asked him about this and his reply was " You cant check the levels for these particular drugs". is this true?

Comments

Re: combination of lamictal and topamax

I hope you are doing well.  I am on Lamictal now (300mg) and I think it is great.  Also taking Keppra and the combinations is working wonderfully for me.

Regarding Topamax...  I know it may work for some but I had a horrible experience with it!  In March, 2004 I started Topomax (I don't remember the dose), and I ended up in the hospital in Dec for 2 weeks.  I lost my short-term memory, (I don't remember 2004 and only a little of 2005), my health, almost lost my eyesight.  It took years to recover physically and I am still working on the emotional healing.  During this time I was also on Depakote.  Be wary of that one too.

If Topamax is working for you then great.  But keep very close tabs on it.  Seriously.  Ask your doctor to explain things to you. And if you have more questions ask again and don't be afraid to call.  He/she is there to help you.  If you have to be a pest, so be it. 

My doc checks my med levels.  And I can't say for certain but I am sure Topamax and Lamictal can be tested.  They have to keep tabs on them somehow.  Ask your doc again, and again, and again.  You need to have your questions answered and you deserve it.

Take care...

~ CJ ~

Re: combination of lamictal and topamax

I had really bad hallucinations with the lactimal / topomax combo. Then I just went onto Topomax and like you CJ had really bad memory probs, and am not back to how my memory was before.  How awaful almost losing your eyesight. There are whole parts of my life I don't recall. I came of it 3 months ago and my seizures and much more frequent and intense so the topomax helped there. But 400mg was too much as my hair started to fall out and people say I lost my sparkle so I came off it. Now I'm giving the meds a rest, but would say you can only try these things and if there not working for you move on to the next one or try something else. Best wishes Bex

Re: combination of lamictal and topamax

i definitely think its time to call and make a appt with a epilepsy specialist. i have a genetic type of epilepsy primary generalized seizures which is tonic clonic and abscense that are all over the brain at once. at 45 i became   uncontrolable and the combination of lamictal and topamax is what they are moving me to cuz they find that the chemical reaction between the 2 drugs works well to control tonic clonic. i have had e all my life but the last almost 5 years have been dificult. i started out with just nocturnal as well, then some partial complex which there is some dispute if it was more a aura or a pc. but anytime you cant get your siezures under control, my neuro after 10 months sent me to a epilepsy specialist cuz you can get some brain damage if you have a lot of siezures or siezure activity in your brain even without the actual siezures. i ended up changing epi spec docs last oct and now have a much better doctor who talks and listens and spends as much time as you need which my last epi spec didnt. i am also getting a vns put in to try to control them.  good luck  to you but find that epi spec asap so they can do there in hospital veegs, etc.

Re: combination of lamictal and topamax

i had been seeing a neurologist that had put me on the 400 mg dose of lamictal and i was on a 100 mg dose of topomax and then recently started seeing a new neurologist who did test those levels and got back with me and said the lamictal level was more than twice what it was supposed to be in my blood. he is slowly backing it down to 300 mg and slowly increasing my topomax to 200 mg. you might wanna be sure to keep a tab on your lamictal level at that dose.

Re: combination of lamictal and topamax

"You cant check the levels for these particular drugs"

Then why has my Neuro been sending me to the blood lab almost every week for a month to get my Lamictal level checked? I just started Lamictal a few weeks ago, and am only taking Lamictal. My Dr doesn't like to combine drugs, he wants to find one that works for me and get the level to a theraputic dosage and stick to it. My level is good for now according to the last blood test I had, and my Dr was happy with my progress on Lamictal. Along with being able to eat better, and the changing to a warmer season, Lamictal seems to be working fine for me right now. I've never tried Topomax, and as well as I'm doing on Lamictal, I don't want to change anything. I call BS on your Dr saying, "You cant check the levels for these particular drugs". Now, it makes me want to go to the lab I go to get my levels checked, and see if they say the same thing.   

Re: combination of lamictal and topamax

I agree. My Dr. has been checking the levels of lamactil in my system as well. The whole point being that changing medication may be the only chance I have of not having more seizures based on what my liver is holding and dispensing.

Re: combination of lamictal and topamax

 I don't mean to intrude, I don't have Epilepsy,I have severe migraines and I take both of these drugs and a hormone. My doses aren't as high as yours,but I worry about my levels and the long term effects they are having on my body.The topomax alone could not handle the migraines and after a few other meds my neuro added the lamictal.The combo worked good until menopause...don't laugh.Now I have the added blessing of hormones to help calm the migraines back to once a month.They were daily.I have noticed a slight change in memory, and brain function,even some personality quirks I don't care for.It might be "the Pause", but I'm not so sure.Do you think the combo could effect me this way?I'm on it 4 years.

Re: combination of lamictal and topamax

Reesie...

Speaking from my experience and my experience only, Topamax should be taken off of the market.  But that is just me.  Check out this website for some information.  The PDR (Physicians Desk Reference) is a resource most often used by physicians regarding 'meds'.  The side-effects I experienced centered around the 'visual/anorexia/loss of concentration/memory problems (big time!)/and most of the others mentioned.  I don't remember what my dose was.  I'm sure it was higher than what you are on.  I was also on Depokote.  My family/friends/co-workers said my personality changed.  I don't remember.

My advice:  Keep close tabs on it and expect your physician to answer any and all questions.  That is what he is there for.

www.pdrhealth.com

Re: combination of lamictal and topamax

Thanks for your comments, i fully agree that it should be taken off the market! I recently went to a new neuro because my old one just ignored the side effects i was having. The new one immediatly noticed that topamax wasnt right for me and has started me on a reduction programme. I have posted another discussion "Coming off Topamax".

Re: combination of lamictal and topamax

I am glad your doc is changing your meds.  Topamax is pure hell!!!

Best of luck....  ~ CJ ~

Re: combination of lamictal and topamax

TOPAMAX DOESNT NEED TO GO OFF THE MARKET, IT DOES WORK FOR PEOPLE JUST NOT EVERYONE, THATS WHY THERE ARE SO MANY DIFFERENT SEIZURE MEDS ON THE MARKET. AS A UPDATE, I HAVE NOW BEEN ON TOPAMAX AND LAMICTAL FOR 2 MONTHS AND NOW TAKING 400MG OF EACH A DAY. THEY ARE WORKING GREAT FOR ME. A BONUS IS MY MIGRAINES I GET ARE WAY DOWN. SO I GUESS LIKE ALL MED COMBOS, IT WORKS FOR SOME AND NOT FOR OTHERS. KEPPRA AND ZONAGRAN WERE A BAD COMBO FOR ME, DIDNT HELP MY SEIZURES AT ALL AND I WAS ALWAYS CRANKY. 

IF EVERYONE WENT BY THE SIDE EFFECTS ON THE DRUGS FROM THE PHYSICIANS DESK REFERENCE, NONE OF US WOULD BE TAKING ANY DRUGS AT ALL FOR ANY CONDITION. THE THING IS NOT EVERYONE HAS THE SIDE EFFECTS, THEY LIST THE SIDE EFFECTS THAT SOME PEOPLE GOT. IT  DOESNT MEAN EVERYONE WILL HAVE THEM OR EVEN A LOT OF PEOPLE WILL. ITS A CHANCE THAT SOME PEOPLE WILL AND TO WATCH OUT FOR IT. I AM ALWAYS AWARE OF WHAT TO EXPECT AND ALSO DOUBLE CHECK OTHER PERSCRIPTIONS I GET IN DRUGS.COM TO CHECK FOR DRUG INTERACTIONS. ITS MY BODY, I KNOW WHATS GOING IN IT.

THIS IS IN CAPS FOR THE VISUALLY IMPAIRED

GOD BLESS,

BANFFGIRL

LIFE IS FRAGILE, HANDLE WITH CARE.

Re: combination of lamictal and topamax

BanffGirl...  You are right and I agree with you.  If I overstepped or caused offense...  I did not mean to.

~ CJ ~

Re: combination of lamictal and topamax

CJ, NO PROBLEM, NO OFFENSE  WAS TAKEN. I WAS JUST STATING A FACT ON MEDS. WHAT I DONT UNDERSTAND OR AGREE WITH IS WHY THE FDA ALLOW DRUG COMPANIES TO ADVERTISE ON TV AND IN MAGAZINES WHEN DOCTORS PRESCRIBE MEDS. THAN AT THE END OF THE AD, IT LISTS ALL THE SIDE EFFECTS THAT MAKES YOU THINK, WHY WOULD I WANT TO TAKE THAT? GO FIGURE.

IN CAPS FOR THE VISUALLY IMPAIRED

GOD BLESS,

BANFFGIRL

LIFE IS FRAGILE, HANDLE WITH CARE.

Re: combination of lamictal and topamax

 

 This may or may not be helpful to you guys as I seem to be a rather unique case,but I would appreciate your input. I My epilepsy is directly related to an extreme case of hydrocephalus that I have had since birth.It did not appear until I was 34 in my 16th year of service in the Coast Guard.Since it was assumed it was the result of a car accident suffered about 10 years earlier{PHS is not known for exhaustive medical research or testing},I was placed on Dilantin and placed back on my ship, 10 months later I had my second seizure,this one much more exciting.Interstate 95 moving at 60 mph,I was driving of course,backed up traffic for 4 hours. Long story short this time a CTscan,EEG,and full workup were done and my first shunt was implanted.Since then 10 years ,2 additional shunt surgeries,! emergency because of brain swelling and 7 medications later I am reasonably stable.I initially took Topamax in tandem with Tegretol

 specifically for migraines after that I transitioned from Depacote due severe abdominal and intestinal complications.Then to Lamictal as it was supposed to deal with both problems,but it quickly became evident it was not making it.I proposed to   my neurologist the idea of Duotherapy combing Lamictal and Topamax; at a dosage of 400mg- 200 am-200 pm Lamictal,100mg AM Topamax,50mg PM .I knew it had worked with Tegretol,I was taken off Tegretol because I was still experiencing seizure,albeit myoclonic.I would love to hear more on specific problems with these medications as I am developing prostate and urinary tract problems,but thus far none of my physicians are connecting the two.

Re: combination of lamictal and topamax

With all respect to your opinion on how you think things ought to be if you do not mind I would like to just share my input. I am new to this site, but have been on Topamax for longer than 12 years now. There is little to no added benefit I have found when it is prescribed to those with a seizure disorder.

Hallucinations
Tinnitus
Bipolar symptoms
Agitation
Irritation
Fatigue - to the point of narcolepsy

The list could continue but the point has been made. I understand a doctor prescribes a medication even with so many side effects because he or she believes the patient has more to gain by taken it than to loose from the adverse side effects. Sadly this is not the case. Topamax being a universal ban-aid medication for migrants, seizures, and bipolar have problems when lumped together. Those who are not bipolar that take this medication become such. Seizures alone already cause psychological and emotional imbalances. The fatigue alone is a killer in itself why bother taking a medication that would put you into a narcoleptic state. This medication distorts reality with delusion. It makes it hard to establish healthy relationships. It is known as the stupid drug which I personally can vouch for because it lowers the person IQ by 50 points at minimum.

Re: combination of lamictal and topamax

I am very intrigued by your information and would like to know where you were able to locate it...I would like to read up on it.

I have been on & off Topamax for quite some time but as you will see in my response to the question that brought these replies to a discussion I have been on lamictal & topamax regimens for about 2-3 years.

I just suffered my most (or what I have been told my most severe) severe seizure in 12 yrs that I have been diagnosed with JMC epilepsy. My husband & I decided that if this medication regimen doesn't work we may look into the Vimpat that has just been approved to the market.

I have to agree with your list of side effects, when I was on the Topamax alone I did suffer from if not all but some of them and it scared him. Please feel free to communicate with me further.

Warm Regards,
Fiona

Re: combination of lamictal and topamax

Hi,

I have had known epilepsy for almost 12 years now and I have been on a variety of medications. As of recent I have been on Lamictal 400mg and Topamax 150mg (until Jan when it was raised to 200mg). I don't know how your doctor has it set up for you but I take 200mg L & 100mg T in the morning and the same set up at night. I also have bloodwork done regularly every year to check my levels to ensure that my liver is not affected by these medications. My neurologist also tries to get an EEG every 2 years to check the status of brain activity. BLOODWORK is possible!

I don't know where you are located but it took me awhile to find the right doctor-I am on my third Neurologist...

I know that it is hard to deal with something like medications, where it could seem so little to others but when you are dealing with epilepsy it is a big deal. I wish you the best in finding a solution and hope that surgery is not an option.

Warm Regards,
Fiona