Zonisamide and ammonia elevated

Posted by minajo @minajo, Oct 19 11:39am

My 47 yr old nonverbal autistic/epileptic was switched year ago due to Dilantin problems, since on Zonisamide her creatine, chloride has increased, she's gained 22# in 14 months,
We just did hormones and FSH, etc doesn't point to menopause but ammonia is 41( normal under 33)
She had over 100 on Depakote
Seizure specialist doesn't think its Zonisamide but no other med changes, diet or activity level in year so if not Zonisamide what???
If we change, dr suggests Lamictal..
Anyone go from zonisamide to Lamictal?
Thank you..

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I am interested in this too I am on both Lamitrogine and Zonisamide could that be one of the reasons it is near impossible to loose weight I do not over eat any longer but I am not dieting but I am way way too heavy if I could loose weight by eating around 1000 calories I would do it but I just maintain my hefty weight eating between 1200 and 1500 a day yes occaisionally more but I am always looking at what I've eaten so any feedback on those two drugs I'm listening.


Hello, my daughter is autistic/ epileptic and i am retired RN so keep up with all her medical.. she had disaster on Depakote, ammonia was 105, hospitalized 12 days.. then dilantin, always at lab, adjusting dose, last August went on Zonisamide, every month 2 lbs.. but behavior good.. now ammonia 43,not too high but still above normal, on Lactulose presently to lower
Abdomen very puffy, weight has settled there causing breathing issues .
Doing ultrasound soon, then ctscan
Dr will probably change to Lamictal if nothing shows up..
Her diet, activity level same, can find nothing else but new zonisamide since last August, also kidney labs bit elevated too
Gotta get ammonia down now, then more tests..
Hope you have a good dr to explore your labs, do tests too!!


Hi @minajo
Epidiolex (medical cannabis) could be an option for your daughter. I know myself two people, one with autism and the other one with epilepsy and autism, who have been treated with medical cannabis and have been much benefited much by such medication. I myself am being treated with CBD (from medical cannabis) by my epileptologist. Try to speak to her doctor about Epidiolex available in the US.
AEDs do help much to control seizures, but for many the side effects are very difficult to tolerate. Medical cannabis, specific diets and other natural treatments might be helpful.
Have a look at this video on Epilepsy & Gluten Sensitivity. I have reduced my seizures by more than 60% just by taking gluten out of my diet.
Wishing you and your daughter better days!
Chris (Santosha)


Thank you so much! Yes, I've suggested that to her neurologist and told" no studies support etc…" Very frustrating.. my daughter has only had monotherapy with aed's.. her older sister has hEDS too so with autism, epilepsy, family history so much to consider.. she's even had reaction to Trazadone for sleep so i have to tread gently to consider changing anything but these few months on Zonisamide and weight gain, kidney changes, ammonia cannot continue
Thank you for that information and i shall view the video!!


Hi @minajo Good Morning
Unfortunately, many doctors are still reactive towards medical cannabis and other more natural treatments (ie. diets), influenced by Big Pharma, giving this answer "There are not many studies to support the benefits of medical cannabis".
As we know scientific studies are mostly sponsored and paid for by Big Pharma, and they are certainly not interested in those studies as Medical Cannabis is a natural medicine that will not bring revenues to Big Pharma as it can not be patented. On the contrary, the success of medical cannabis might affect negatively the revenue of those pharmaceutical companies with medication for epilepsy, autism, depression, and so on.
I was in the same situation as you in 2020, being my neurologist at that time reactive to medical cannabis. I then looked for a second opinion and searched for a doctor with a more open mind and that truly does the best for his or her patients based on "First do no harm". Today, there are more and more doctors with a functional and integrative medicine approach, thankfully!
Here is another video of Dr. David Perlmutter (renowned neurologist, researcher, and neuroscientist) about a fraudulent study of 2006 that was just discovered. You can also check this information in the main newspapers.
Recently, I watched a series on Netflix called Painkiller, that tells the true story of OxyContin, showing how this market operates.
Through my own experience, I see that we have also to do our own investigation.
Wishing you and your daughters all the best!
Chris (or Santosha)

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