Has anyone taken Zonegran?

@pamelastewart5

I never took it but Laurie @lsittll did. Here's a link to a discussion she started.
Zonegran can potentially weaken bones and cause kidney stones. Has Caleb had his vitamin D checked? Living so far north it would be worthwhile to check it, in my opinion.

Best of luck to you & yours,
Jake

Thank you, Jake. I will check out the earlier discussion. Sorry I missed it.
Caleb just had his Vit D levels checked and has started on Vit D3. Our neuro said that most anyone living in the upper midwest has low Vit D. He specified D3 as the form of Vit D to take.

Yes, I take Zonisimide (and 1 Lamectal at night )for 20 years 100 mg
I am on a rather large dose of Zonisimide 5 at night 2 in am
I also take divalproex PM- Started divalproex-Zonisimide -Lamectal this winter I am doing excellent. I use to just take the Zonisimide-Lamectal before adding divalproex.
I take vitamin D also My Dr use to have me on 50,000 now I am on 10,000 weekly
Also regular bone density tests.
The main thing is to find the right medication or combination of medications for you.
I too was on Dilantin, Celonton, Felbatol, valoric acid years ago.I eventually was weaned off of the others a put just on these two.
I am not familiar with Epidiolex so I can’t address that but I know cutting back or adjusting meds as they are tolerated per individual and starting new meds is one of the most difficult-scary things…
I will be thinking and praying for you and your son. Hugs

@becca13
Just curious if you have balance, memory, fatigue or other side effects.
Jake

Hi @pamelastewart5
I take a 100% CBD medication (medical cannabis) comparable to Epidiolex. It has been the best medication I have taken in those 4 years of treatment of my epilepsy (temporal lobe). I have heard of people with Lennox-Gesault Syndrome who treat with Epidiolex having had good results. Try to talk to them. Adapting to the best medication needs patience and persistence, it took me a bit more than 2 years, but it was very worthwhile. I would do the same if I were again in the same situation I was in 2019, 2020, and some months of 2021 taking AEDs which has terrible side effects on me and my life quality.
As I have mentioned in many recent posts in our group, starting to be treated by an epileptologist (a neurologist who is specialized in epilepsy) has made a great difference in my treatment and life quality. I am with him since 2021 and have a life again 🙂
Stay strong in your battle together with your son. My hugs to both of you!
Santosha

No I do not have any issues you asked about- but when I took to many or doseage to high- I was fatigued and this last winter when my neurologist reduced my Zonisimide I had so much more energy- So I didn’t know then lol there was more - but I have in the past with other meds been fuzzy or off balance I have been on a gambit of drugs I was diagnosed at 12- I was on Dilantin /Celonton/when I was younger- went thru a period of time I was on Valproic acid/Depekene Felbatol and they all worked for periods of time but this combination so far long term has been best for me. My memory is very good for 73 I try to read and
Do strategy games etc I am a caregiver for my husband who has dementia.
Since divalproex was just recently added this winter I don’t how long term effect will be. My main concern has always been my organs and so far all is well and I never had kidney stones. I am thankful. Also this winter I used Lyft as I was having a medicine adjustment and that was a big relief for me.
I hope this helped some 💜.

Thank you, Everyone, for your helpful comments. My son has taken Epidiolex for about 2 years. Before that he took Medical Marijuana for several years. Both are helpful, but he still has about 5 seizures/mo. when he sleeps. Here is an update on what has happened in the last week and a half: He has been on the Zonegran for a week and a half and he seems very drowsy and lethargic. Also, he has stopped bearing weight completely, which is worse after his dose, given at bedtime. This is a big problem in his daily care. He only weighs 137 lbs., but when he is dead weight it is hard to get him out of bed and to dress him, etc.. We have a call in to the neurologist. We don't think he can stay on Zonegran. Also, he had a seizure 2 days after we started the med. Our neuro told us that Zonegran would take effect after the first dose. So . . .

Hello pamelastewart5 !

I have taken Zonegran (Zonisamide) and found it to be the best medication I have ever taken. I have uncontrolled seizures for 56 years. I have had many seizures. Almost two years ago I began taking Zonisamide,
I have been seizure free since I have taken Zonisamide.

Hi @pamelastewart5
I am sorry to hear all that about your son. Some AEDs can cause seizures in some people. I had my first convulsion (my seizures are focal simple and complex) after taking Trileptal. This has happened because Trileptal has lowered my sodium level, which has led to this convulsion and my doctor at that time has stopped it immediately. But, I know of other people that take Trileptal and are doing just fine. It is very particular to every person! Has the sodium level of your son been checked lately? My current doctor asks me for blood exams every 6 months.
For me, the experience of AED treatment was a scary one, but this is very particular to me, I am a very sensitive person to medication since my childhood. I have read that about 30% to 40% of people with epilepsy have refractory epilepsy, and I am one of them. People with refractory epilepsy have difficulties with AEDs treatment, they either cause more seizures in the person and/or cause terrible side-effects. CBD/Epidiolex is the medication that has helped me the most. I did not become seizure-free, but it has reduced my seizures, softened them, and made me feel better and myself. Together with this medication, I started a gluten-free diet more than one year ago and this has also had a very positive impact on my seizures, reducing them greatly. Today, I have 2 to 3 seizures a month (focal complex seizures).
Santosha