Zonegran

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Elisa

New
Messages
114
Reaction score
0
Points
0
Well, my seizures were just getting worse and worse. So, I called yesterday and told the doc. that I wanted to try Zonegran again. I tried it last year and it worked for my seizures, but seemed to cause headaches.
I was on a couple of drugs last time, and my hope is if I take Zonegran by it's self then maybe I won't have the headache issue.
I was wondering if any of you have tried Zonegran and what was your luck with it.
Elisa
 
Hi Elisa, obviously no one here has experience with Zonegran. Are you using it again? Did the headaches return?

I'm wondering if you just needed to ramp up on it slower to allow your system a chance to adjust to it.
 
I am using it again, and doing pretty well on it. I think the trick is I'm using it in mono- therapy this time again. As a matter of fact it seems to be helping with some of my facial pain that I have on the left side of my face, which was one of the reasons that I tried it the first time. ( it is known to help with nerve pain) Anyways I went up to 300mg last night with has left me very tired today, but I will get used to it with time, I'm sure. (I hope) Cross your fingers for me because I still having way to many seizures, and I'm just at the end of the AEDs.
Thanks for asking.
Elisa
 
Hi Elisa,

I read in another forum where the Zonegran is causing you problems with stomach pain. Have you tried using any herbs to mask the side effect? I know that my wife used Red Raspberry Leaf tea effectively for relief from nausea when she was pregnant. Perhaps there is an herbal tea that will offer you some relief.

Matricaria recutita, also known as German Chamomile, is a medicinal herb which has been used by European naturopaths for centuries. Its anti-inflammatory, anti-spasmodic and calming properties make it an extremely effective treatment for digestive disorders.

Filipendula ulmaria, or Meadowsweet, is an anti-inflammatory, soothing digestive remedy which helps to protect the digestive tract and reduce stomach acid secretions. It is also effective in reducing the pain of digestive disorders and ulcers and is similar in structure to the synthetic drug called acetylsalicylate, or aspirin - without the side effects commonly associated with aspirin.

Ulmus fulva, or Slippery Elm, is one of the most effective herbs used in reducing digestive pain and irritation and also protects and soothes the lining of the stomach and digestive tract due to its high mucilage content. Only bark from top quality Slippery Elm is used in Gastronic Dr.

Sutherlandia frutescens, also known as 'Cancer Bush' or 'Kankerbossie' is a medicinal herb exclusively found in Southern Africa and has been used by indigenous people for thousands of years to treat chronic and acute digestive complaints, internal cancers and as a powerful tonic. Recent research has confirmed its adaptogenic properties. Sutherlandia contains a number of highly active compounds, including pinitol, L-canavanine and the amino acid, GABA. L-canavanine is a strong L-argine antagonist that has documented anti-cancer and anti-viral activity (Swaffer et al. 1995, Crooks and Rosenthal, 1994, Ostlund and Sherman, 1996)

...

Zingiber officinale, commonly known as Ginger, has a long history of medicinal use in traditional Chinese and Ayurvedic (Indian) medicine. Modern research confirms its effectiveness in relieving the symptoms of nausea, vomiting, indigestion, flatulence and dizziness. Working mainly in the digestive tract, Zinziber boosts digestive fluids and neutralises acids, making it an effective alternative to anti-nausea medication, but without the usual unpleasant side effects. Zinziber has strong anti-inflammatory and pain relieving properties and is also used to treat arthritis and other inflammatory diseases .

Foeniculum vulgare, also called fennel, was a favorite herb in medieval times and was used to stop stomach rumbles and colic. It was commonly used after meals to prevent flatulence, indigestion, colic and other digestive problems. Fennel has strong calmative and anti-inflammatory properties.

Mentha piperita, one of the most effective of the mint herbs, has been used for centuries to relieve indigestion, nausea and heartburn. Modern research has demonstrated its effectiveness in soothing the symptoms of diverticulosis, IBS and other digestive disorders. Mentha piperita is widely cultivated for medicinal uses and also has anti-inflammatory and anti-spasmodic properties. It relaxes the muscles of the digestive tract and stimulates the flow of natural digestive juices and bile, thereby assisting healthy digestion.

Pelargoneum graveolens, also known as 'maagpyn bossie' (stomach pain bush) is a traditional medicinal herb used by indigenous people of South Africa. It has a wide variety of uses and is an effective calmative and anti-spasmodic herb, reducing stomach cramps and pain.

Natural Medication for Digestive Disorders
 
Nope haven't tired any herbs for stomach pain, but am going to be trying herbs for headaches and seizures. I just started Acupuncture, for these things as well, so far so good. The guy who does it wants to start me on herbs as well. My only issue I have with this is money. Of course insurance doesn't cover any of this stuff, so I'm slowly but surely working my way through our saving. I'm looking for a job at the moment to help pay for some of this stuff.
I'm still taking 200mg of Zonegran and I seem to be getting used to it, I guess I just needed to give it time. I have added Lamictal to it as well, but adding it it very slowly. I'm still having seizures daily.

The day after I go for my acupuncture I will go without having a seizure, but then the next day I will be back to square one.
Everything that I have read has said that there is promise, but it will take time, but at $120.00 a week, I don't know if I can do it.
Anyways, thanks for the tips on the herbs.
 
I feel your (monetary) pain. Stacy was getting weekly treatments for acupressure a while back and it was expensive too. I think it was doing her some good, but it is a slow process.

My mother used acupuncture to treat her frozen shoulder before and it offered some relief. She eventually had to abandon it for more traditional physical therapy though.

In any event, it's good to hear that you are getting used to the Zonegran. I'm assuming that means that your stomach pain is diminishing.
 
Yes, I'm getting used to it. guess I just needed to give it more time.
Elisa .
 
Well, went to 400mg and I can't get out of bed in the morning and the headaches are back. So, I'm back to square one. Zonegran also seems to be making me very depressed. I'm going to drop it back to to 300mg again tonight ( been on 400mg for little over two weeks) My doctor went and had a baby so I'm on my own for a while.
 
Ugh. Sounds like it takes a while for your system to adapt to the Zonegran and the side effects are not pleasant. How was the seizure control @ 300mg?
 
siezures are o.k. thanks for asking, had a couple last week, none this week.
 
I'm on Zonegran

I'm on that and experiencing the same side effects. I put up with them though because its the only thing thats worked for my seizure control. Have you tried all other options Elisa?
 
I have tried all my other options, but just couldn't take the Zonegran. I have long since gotten rid of it. I have been on Lamictal since Aug. and doing great, Thanks.
Elisa
 
zonegran

I am on zonegran currently and although it does not stop my seizures, I am able to concentrate for the most part on this drug. I do get headaches but I don't think it is from the zonegran. I usually have about one seizure a month and on a regular basis as well. I have tried to go off of the medication because I felt is wasn't doing anything... I was still having one seizure a month. When I did this I ended up having another one. I believe zongran stops the break-through seizures. I did take keppra with the zonegran at one point but the side affects made me go off the keppra. I do not get the stomach pain from the zonegran either. All in all it is a good drug but I am not seizure free. One more important fact it does make u lose weight. also I live in florida and I am always cold. I don't know if that has to do with the zonegran or maybe my iron is low.
 
I have been on Zonegran for a long time and virtually have zero
side effects (the only AED I don't have side effects are Zonegran,
Klonopin, Mysoline, Dilantin (exception that it wrecks a havoc on
my teeth but then again I had it for 15+ years)...).

I've been seizure-free now on Zonegran & Klonopin paired together.
Zonegran 400 mgs & Klonopin .5 TID - Daily

BUT people forget ...

YOU NEED TO DRINK A LOT OF WATER if you're taking
Zonegran / Zonisamide.

I also live in Florida ... and I am a Pioneer Native of Florida and
I freeze when temps fall below 72* anyway ... and it was like this
before Zonegran (or Zone Alarm as my son loves to call it) came
along ...

:lol:
 
Back
Top Bottom