VNS problems with Tonic Clonic?

[Torak]

I'm interested what anyone elses experiences with VNS implants are as I have developed a problem with mine.

It's annoying as it has reduced the complex partial seizures and prodromes a lot but the tonic clonic seizures have begun to get worse and started clustering. It can also take me longer to come out of a tonic clonic seizure, up to 30 minutes before I start to regain conciousness when it used to be 15 or so.

I usually have 200 seizures a year. Most were complex partial, and only three or four tonic clonic seizures.

Since the VNS has been installed in December 2009 or so and the current increased it's been weird.

Still 200 seizures a year, mostly simple partial, the complex partials have gone down to 60-80 per year, but the tonic clonic seizures have got worse.

Instead of having the odd one or two they have begun clustering. In August 2011 I had 6 in one day, the most I've ever had in one day, going into prolonged complex partial seizures in between. I lost 16 hours of memory to this episode, and my parents said that for all this I was glassy eyed, off the planet and not responding to them. The CP seizures just seemed to continue, until the next TC.

This particular episode started at 3:30 AM and continued until 2:45 PM, tho I remember nothing until about 7:00 PM.

This has been since the current hit 1.5 mA.

Does anybody else here have any experience of VNS making some of your seizures worse?

In the meantime the neuro is contacting my GP to get me a prescription for Clobazam so that if I start having more TC clusters my parents can give me one of those (10mg dose) to stop the seizures and one more 12 hours later. It'll be just for bad TC episodes, not for every day use.

Is clobazam any good? I've never taken benzodiazepines before.

Have a good weekend.

 

[Nakamova]

Hi Torak,

You might want to check out http://www.vnsmessageboard.com/index.php if you haven't already. And ask your neurologist about your options with the VNS -- it doesn't seem to be working right if you're having many clusters of seizures that you have to control with Clobazam too.

 

[Birdbomb]

Hi Torak

1. Call your neuro if there are any sudden changes in seizures. When you have had good results, there should not be any need to add more medications.
   
2. INSIST on have the unit interrogated for battery depletion. Some units had sudden EOS (end of service) without warning
   
3. INSIST on checking the leads for impedance. Lead fractures are quite common. Have a seizure, fall down hitting the lead and then it's damaged.
4. If you had no problems at 1.25 mA. but began all these problems at 1.5 mA. have the unit reset BACK to 1.25 mA. This may be all you can tolerate at this time.
5. One listed side effect of vns is INCREASED seizures.
6. There is no guarantee how long vns will work for you.
7. If your neuro is unsure what to do please have him contact Cyberonic$ ASAP

 

[Torak]

Thanks for the advice.

I'm off up to Kings College Hospital in London on 7th November, the neuro at the local hospital advised me to get the current lowered again.

It still works, the pains I get shooting through my jaw every 3 mins assure me of that.

It's annoying, it reduces the complex partial and has had a good effect on the depression I often suffer from, even reducing the number of prodromes I have, but making the tonic clonics worse is not a trade off I'm prepared to make.

Cheers.

 

[valeriedl]

When I first got my VNS the neuro had to reduce it because it was set to high and is slowly increasing it. Do you take any epilepsy meds too?

I take meds and have the VNS but still have seizures however they are nothing like the ones I had before I got it.

 

[ajax]

I'm sure the VNS could be the culprit for the change in seizure frequency and severity. My experience seems to be the exact opposite of what you describe, as I've had an increase in partial seizures (including partial status seizures that I'd never experienced before). However, it's significantly decreased the frequency of generalized seizures, especially tonic clonics, so in that regard I'm quite happy.

 

[Torak]

At the moment i'm on 300mg/day of carbamazepine (any more than that makes the TC seizures much worse).

Tried loads of other meds, all simply made the complex partials worse.

TCs can be predicted to a limited degree, as usually before a TC seizure all the seizures will stop for a week or two, then suddenly *bang*. Not always the case though. Sometimes it's out of the blue with no warning.

Quiet so far in september apart from a few simple partials. They tend to be purely sensory in nature, just a dose of fatigue afterwards.

 

[ajax]

Also, there shouldn't be any pain. I can't tell when mine goes off unless I'm talking. That makes me think maybe something isn't right with one of your leads.

 

[Torak]

The neuro told me that it can cause pain in the jaw, neck or face, it's not pain so much as a kind of dull presence in my jaw, or the muscles in the left side of my neck cramping (which is annoying). It was painful at 1.75 mA, had to turn it down as I struggled to breathe properly, but 1.5 mA now.

 

[acpollard2010]

torak i have had mine for 6 yrs and its up higher but iv had to deal with all those side effects u guys were talkin about just deal with the not being able to breath and my throat hurts and feals like my teeth are breaking my point was i got it cause of generalized epilepsy mtonic clonic seizures worked for awhile im where u are in clusters and back to t/c and lasting longer and not breathing so i guess i would look at it as unsucessful.and had to bump meds up!