Epilepsy Types

[Barney1942]

Does anybody out there have a V.N.S. fitted this is short for vagal nerve stimulator. I had one over a year ago. Everything is going fine so far they are meant to reduce any type of seizure. My specialist suggested me having one, because all of the medication that I was taking didn't seem to work and this was the last option.

[monaco1]

Definitely seems to help me - I'm on my second one now - about 15 years so far! Doesn't stop every seizure, but in my case it stops or shortens about 80% of them. This can be different for everybody - how well it works also can depend on which drug you're on. Sometimes you have to be patient for regularity - especially when the VNS nurse changes the length and strength of activity. For a few days or a week - it might not work as well! But your body readjusts! It is just like changing level of medication. I would recommend it. It has stopped and shortened a lot of my seizures. Worth having it! I have been on all medications - about 16 through my life. They haven't got much left for me! Have had epilepsy since birth. It is worth it! (just if you do travel through airports - you can't walk through scanning places - the metal in you sets them off!

[trevor1954 in reply to monaco1]

Hi

I`m going to see epilepsy specialist this morning. I was thinking of asking her about having one of these fitted. I have been on about 15 meds all throughout my life. I`ve had epilepsy since I was two. Last time they changed my meds was about 5 yrs ago. Then I started feeing as though it was coming on but my body was fighting it and it is draining me. Felt one coming on last night but body fought it off with some help from my wife.

[AmyBadd in reply to trevor1954]

Let us know what your doctor says

[trevor1954 in reply to AmyBadd]

Hi

Just got back. Dr thinks it is not epilepsy. She has told me to reduce the clobazam. Have some blood tests for thyroid. And go for anxiety and depression counselling. We will now see. Personally I don't feel very happy with the way she is treating me. The epilepsy nurse I saw three weeks ago, told mr to increase clobazam now she says reduce it.

[AmyBadd in reply to trevor1954]

Well I take clobazam and I have been told it should not be taken as a regular drug. The body quickly builds up a tolerance to it (ie it stops being effective after a few weeks) and you can also suffer withdrawal symptoms coming off it if you have taken it regularly. I take it only when I feel I need a "top up" on my normal medication, whenever I feel particularly at risk, for example if I haven't slept well.

My regular medication is epilim chrono (sodium valproate). I usually end up taking 1-2 clobazam a week.

Amy

[trevor1954 in reply to AmyBadd]

Hi

I am currently taking 1500mg jeopardy twice daily. 150mg vimpat. Twice daily. Then clobazam on top. Still going cold as though epilepsy is coming on but doesn't.

Trevor.

[AmyBadd in reply to trevor1954]

Hope you feel better soon. It is very difficult when you get mixed messages from professionals. Is your doctor an epilepsy specialist? I am lucky. My neurologist has only worked with epilepsy patients for a long time now, so it seems like he has pretty much seen it all.

Good luck, keep smiling

[trevor1954 in reply to AmyBadd]

Thanks Amy

No my doctor won`t deal with me. They send me somewhere else to see an epilepsy nurse and every so often I see the specialist at same place. She told me to stop the cloabazam starting from this week then stop it completely in two weeks. She thinks that something bringing it on could be either active or inactive thyroid so they did tests for it yesterday. I will hear in next couple of weeks. If I don`t hear all is ok. Thanks for your concern.

keep in touch and look after yourself.

Trevor.

[Barney1942 in reply to trevor1954]

I see my specialist nurse whom deals with my V.N.S testing at all out and checking all the settings and the recordings it takes.

[Barney1942 in reply to trevor1954]

I cant believe what you said about the epilepsy nurse to stop taking your meds. I would get a second opinion from someone else if you where told that you had epilepsy and now that you dont. this is pretty strange to me whats the nurse trying to say.

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Hi Barney,

I don't have one fitted but am doing well without seizures so far. Medication appears to be working at current - Carbamazepine and Phenytoin.

All the best.

Les