pleasehelp

You seem to be a bit like me 'drug resistant epilepsy'. When this happens there's nothing you can do. I'm OK when starting a new drug but when the honeymoon period is over it's back to how it was before. My VNS has reduced my seizures, not completely adjusted yet, due for a revamp soon. Weird thing though is my voice, it goes off every 5 minutes sometimes I am affected sometimes not. By the time I've had it adjusted to the right setting maybe I'll get to feel like a new person. Happy days ;-)

hello Steve, I got quite a positive response from my doctor. I apparently had double vision because I had too much epanutin in my system. That is why it was reduced (all without telling me about it - i have said that in future can she tell me what is happening) my vision is much better now. At the same time I have vertigo (which I thought came from the drug) - but I have  a short course of pills to remedy this. I must admit I am  feeling better by the day.

I asked her if I could very slowly come off epanutin as it has caused problems before, but she said I had been on it so long that she would not do it at present. Maybe later.

Thank you so much to everyone that answered my post because at one point I was very scared and didn't have anyone else to 'talk' to.

I will keep you posted. I hope all of you have good outcomes.

Sandra

 

Well Standraw, some good news to wake up to, drink coffee and take my AED’s. But I do agree that your Dr should have mentioned the reason why she was reducing the amount of Epanutin. I hope your Dr does regular blood tests. Some meds need to be monitored often. When I was on Dilantin, the dose never seemed to be consistent. One time I was overdosing on it. I had to lay on the floor; the room actually seemed to be spinning very fast and I was extremely dizzy.

I wish my Dr would do a blood test on how much lamotrigine and levetiracetam are in my system.

I’ll raise my coffee cup and say cheers to you.

Take care, Steve

Karen, After switching from regular lamotrigine and regular levetiracetam (I still don’t know how to say it), to lamotrigine ER (extended release, take one dose a day) along with levetiracetam ER (the combo made me dizzy when I walked to the drug store) and then switching back to regular lamotrigine (3 a day) and staying on levetiracetam ER, has been working. If this ends up failing, my Dr may suggest a VNS again.

Did they put to you to sleep when they put in the VNS? From what I’ve read, most of the time they don’t. If they kept me awake, they better give me a high dose of tranquilizers and a blind fold. When I have blood drawn, I have to look away.

I’ve read, when the VNS goes off, one side effect is the change in voice. How long does your VNS go off, seconds? When they revamp it, do you mean the length in time it goes off or a higher charge?

I’m glad the VNS has reduced your seizures. When you do have trouble, does the VNS lower their intensity and less time?

Take care, Steve

Hi Steve, yes it was a general anaesthetic and the operation took about one a half hours. The VNS goes off every 5 minutes and is on for 30 seconds, it does effect my voice and it's noticeable but you get used to it. When it's revamped the current is turned up but the time on and off stays the same. And the magnet is set at a stronger current than the VNS itself. I wear the magnet on my wrist everyday, but there is a spare magnet which is on a clip and you can put it on your belt. My nurse said don't use the magnet too much give the VNS a chance to detect a seizure, so I do and it works. It's just a bit difficult if I'm out and want to avoid a seizure developing so I use it straightaway. It's a comfort to me when I have my magnet on because I know I'm not in any Big danger. I can recommend it to anyone who's struggling with epilepsy and not having any quality of life, Hope this helps, karen

Karen, thanks for replying and giving the information. I had the opposite idea that the magnet turned the VNS off instead of activating it and increasing the charge like a safty net. But I’d still need a tranquilizer and a blind fold. I assume they need you awake to monitor how you’re doing. Keep in touch on your progression.

Take care, Steve

You're not awake during the operation,and you have a period of 2 week to give the wound time to heal, but afterwards when you visit the hospital to get it programmed and activated then you're awake there's no pain and the wand they use is held up against your chest and doesn't touch your body.

The magnet does two things, it gives you an extra current when you swipe it across the VNS, and then if you want to temporarily turn it off you stick the magnet on your chest with a band-aid and as long as it's in close vicinity with your stimulator it's suspended, I haven't done this yet and I don't think I will because I don't do Public Speaking. As soon as you take off the sticky plaster the VNS stats up. I was a bit concerned at first because I thought it's gonna keep me awake at night but nope it doesn't also you don't feel it come on when you're eating your food. Hope this helps, karen

Hi Winnie my doctor said not to come off them as I have taaken them for so long. But, when I feel better and have done more research I may ask to come off them slowly and replace with another. There was no problem until the drug company changed. Thanks again for everyone's support. I will keep in touch. Sandra xx

May I join your merry band of Muskateers please?

Do you know why th ebrand of epanutin matters? In other wrds what were the constituents of ech brand? were you tang tablets or capsules/

Hope you don't mind my questions.

Lucy.

 

Sorry about the typos, rather tired.

Lucy

Lucy you are already one of the Team/Squad, stay safe and keep taking the pills. Karen

Thank you Karen. I am so fed up of these szs which resemble panic attacks. I get deja vu then tingling usually down the riight ide of nmy boy and throbbing of my leg and a pounding in my head. I just want them to stop.

I tend to get one on awakening or standing up then can have another one straightaway. I proceed to have anoother one in the afternoon then again in the evening. It gets me down because of their presentation and the uncertainty. I also  have a thyroid problem and panic attacks are a feature of this disease as well.

Lucy

Yeah I too get deja vu which enables me to recall my previous seizure and what happened and where I was. Also sometimes the right side of my face is effected I get a sensation that it's drooped but, it's not a stroke. I have 3 stages to a complex partial and 1st stage is a sensation and then increased heart rate, the deja vu is the 2nd stage of my complex partial szs, then after that --------. That's why I've got a cardiac based vagus nerve stimulator (VNS) fitted because it's helps with 2 problems. Karen

Hi Karen

I have long qt syndrome as well. Thanks for the info.

I have just found out that some anti biotics are contra indicated in epilepsy. What a nightmare.

Lucy.

Hi Lucky, I've just looked up long qt syndrome, it's all about Genes, which is what my disorder is, and I have looked at the symptoms and they describe some of mine. Especially the breathing problems, shallow breathing which can trigger a seizure, have you been tested for Lymphangioleiomyomatosis or abbreviated LAM? I also have fibrosis on my lung and bronchiectasis. Karen