Inpatient EEG, possible VNS.

[skyfire322]

For the past week, I've been having different types of seizures (complex partials, grand mals, tonics). When I had my video EEG two months back, it came back abnormal (showed subclinical and clinical evidence). *Luckily* I just got back from my neurologist appointment.

I had told him everything that was going on, and as soon as I told him everything, his eyes widened, was speechless at first, but then knew exactly what to do.

He wants to do at least a seven day inpatient EEG as soon as possible, and pending results, he's thinking a VNS may be the answer, since different dosages and different types of medicines haven't done anything.

I know that others on the forums have it a lot worse than me, so I shouldn't be so down about this, but it has just brought me down to the point of tears. I know he wants to get to the root of the problem, and I know that I'm in good hands, but man oh man....

 

[arnie]

HI Skyfire, I had high hopes for the VNS, and seemed to be a good candidate for it, but unfortunately it didn't really help my seizures and the side-effects were so bad that my epileptologist agreed that we should turn it off. There's a thread here with my whole VNS story, which you might want to read:

http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/

My seizures have now officially been controlled for just over three months due to some tweaks I made in my medication dosing. I talked about that at the end of the thread. The VNS may work for you, since many people are helped by it (about 1/3 of people get really good control, 1/3 get some benefit, and 1/3 get no help at all). I would encourage you to read my thread since it has a lot of info in it from me and from the many people who contributed to it.

Keep us posted!

Onward and upward!

 

[Cint]

Arnie,

You've only had the VNS for 9 months, so I really don't see how you can say whether you're a good spokesman for the VNS. That would be like me saying I had high hopes for brain surgery, but it didn't work for me. It made my seizures worse.

Skyfire, I would encourage you to go to the http://us.cyberonics.com/about-epilepsy website and read their success stories. I've had the VNS since 1997. I've had two battery replacements now and after trying many different settings, we finally found something that works. It charges every 3 minutes for 7 seconds. And yes, there are side effects; shortness of breath, voice changes, hoarseness, coughing, and sometimes sleep apnea, etc. But at least the VNS can be turned off. There is NO turning back from brain surgery. And with meds, you can slowly eliminate them.

Hope you find something that works.

 

[arnie]

Hi again, skyfire. I think you understand that I'm not claiming to be a spokesman for Cyberonics or the VNS, I am just telling you about my own experience with it, which, in spite of the very high hopes I had for it, was not a good one. It was only activated for six months and we couldn't even get the current above 2, not even close to a therapeutic level. Even at the fairly low settings I had a great deal of discomfort every time it went off, which I suppose I could have lived with, but I also would tend to choke almost every time, not only when I was eating or drinking but even on my saliva. In addition to that I was unable to draw a full breath or talk correctly when it was active, not only because of the hoarseness but because I couldn't get enough breath to complete sentences. Finally, I was having increasingly bad sleep apnea, which of course can be dangerous. It was my epileptologist who suggested it be shut off, at least for a while.
I hope you will read the thread that I referred you to. It gives a pretty good picture not only of my own experience, but that of other people here, what some of the Cyberonics people and I talked about, what I found out in the literature and from my epileptologist, etc. I think that in some ways it gives a more complete picture than the Cyberonics website, which has somewhat limited space, and also, naturally, emphasizes the positives and downplays the negatives.

(edit): Shortly after I got the VNS and had a personal meeting with one of the tech reps things were going well for me and I was pretty excited about it all. I told him I would be willing to be one of their spokespeople, and he said I would probably be good but I had to have the device implanted for at least six months, which was understandable. Even though I have no desire to bash the product or the company, nor would I, and I know that the VNS is a viable option for many people, I am sure they would not want me as a spokesman now. Even being level-headed and objective about it, neither Cyberonics or any other company wants a real life person recounting a negative experience. They obviously give all the warnings about adverse effects in writing, but they are aware that most of us tend to minimize those warnings, we think they won't happen to us (I didn't think I would have any of the problems I did, even though I was aware of the potential for them) or have become desensitized to them from the TV ads for meds which show lots of happy people while they recite a list of 20 or 30 possible side-effects and contraindications. (edit)


Best of luck with your decision. Please let us know how things go, OK?

 

[Cint]

:agree: Skyfire. Read Arnie's posts and you'll see that I'm not the only one who has had success with the VNS. Like all therapies, what works for some, won't work for others. And if you download the manuals that are available on the cyberonics website, there is quite a bit of info in the manuals (physician's manuals) for you to review.

Here is some important safety info about the VNS:
http://us.cyberonics.com/important-safety-information

4. WARNINGS – EPILEPSY
The VNS Therapy System should only be prescribed and monitored by physicians who have specific training and expertise in the management of seizures and the use of this device. It should only be implanted by physicians who are trained in surgery of the carotid sheath and have received specific training in the implantation of this device.

The VNS Therapy System is not curative. Physicians should warn patients that the VNS Therapy System is not a cure for epilepsy and that since seizures may occur unexpectedly, patients should consult with a physician before engaging in unsupervised activities, such as driving, swimming, and bathing, and in strenuous sports that could harm them or others.

8. ADVERSE EVENTS – EPILEPSY
Adverse events reported during clinical studies as statistically significant are listed below in alphabetical order: ataxia (loss of the ability to coordinate muscular movement); dyspepsia (indigestion); dyspnea (difficulty breathing, shortness of breath); hypesthesia (impaired sense of touch); increased coughing; infection; insomnia (inability to sleep); laryngismus (throat, larynx spasms); nausea; pain; paresthesia (prickling of the skin); pharyngitis (inflammation of the pharynx, throat); voice alteration (hoarseness); vomiting.

 

[arnie]

:agree:

 

[Nakamova]

Hi Skyfire,

I'm sorry to hear about the escalation of your seizures. Do ask a lot of questions about the VNS, and your epileptologist's experience with it, as well as any other treatments or meds that are still on the table. Whatever treatment choice you make, I hope it goes well. Best of luck to you.

 

[skyfire322]

Thanks for all of the support, everyone. After my inpatient EEG, no matter the results, I'm going to another epileptologist to get a second opinion because I would really like some answers.

You guys are awesome! :hugs:

 

[valeriedl]

I had my first VNS put in 2007 and had the battery replaced in 2013. I was unable to have brain surgery so my neuro suggested it. They tried all sorts and dosages of meds but nothing seemed to be making any difference.

I've had a ton of help with the VNS itself. It has reduced my seizures greatly. Before I got it with only taking meds I was having at least 20 seizures a month. I'm still having seizures now but only around 7 a month and they aren't as bad as they were before I got it. My VNS settings are pretty high and I'm also taking meds along with the VNS too. I have to see my neuro every 3 months to see if there are any changes that need to be made to the settings and to make sure the battery is still going. Depending on how high your settings are depends on how long it will last before you need a new battery.

I have had good help with using the magnet when a seizure is starting. Many times I have a simple complex before a partial complex. I can usually stop a simple partial seizure with it. If I do feel myself having a simple complex and I don't catch myself in enough time my husband will see me using my magnet but I'll be rubbing it on my stomach or leg instead of my chest. There are times when I just go right into a complex with no warning. My husband will use it on me then and it brings me out of the seizure quicker than before I had the VNS.

I have had shortness of breath, increased coughing, throat larynx spasms (which I think is burping), and voice alteration. I will have tingling in my throat but that usually only happens after the settings are increased and I get used to it after a few days and don't notice it anymore.

It's not a 100% guarantee that your seizures are going to stop and you are going to be able to stop taking all your meds. It works good for some people and it doesn't work at all for others. I think it's just something that you need to find out if it's going to work for you. You can always have it turned off but you can not have it taken out, that's the only problem (if you want to put it that way).

 

[skyfire322]

Well, I start my week long inpatient EEG today. I'll report back once I get some answers! Thanks again for all of your support!

 

[Cint]

Hang in there and please, let us know how you're doing.

 

[skyfire322]

Day 3 of 5 in the hospital. I'm going bonkers! Other than a few auras, I haven't had any seizures, knock on wood. The only major issue was my heart rate. My doc did the dreaded strobe light test, and he wants me to be sleep deprived tonight. He also had me do a test with a deck of cards.

Just my luck. When I'm hooked up, nothing happens! Ahh well. If he doesn't see anything tomorrow morning, he'll let me go a day early.

We talked a little bit this morning, and he suggested Depakote, but was beating around the bush with it. As for the VNS, he said that's still an option, and up to me, but I need to understand that it may not work. Once I get the results in my hand, im getting a second opinion.

 

[Nakamova]

Good luck! I wouldn't wish seizures on anyone, but if it will help your treatment...

 

[Cint]

Day 3 of 5 in the hospital. I'm going bonkers! Other than a few auras, I haven't had any seizures, knock on wood. The only major issue was my heart rate. My doc did the dreaded strobe light test, and he wants me to be sleep deprived tonight. He also had me do a test with a deck of cards.

Short a deck, huh? :bigsmile::lol:

Seriously tho, maybe being sleep deprived will bring on the BIG one they're waiting for. I hope you get an answer soon.

 

[skyfire322]

Me too. I'm hoping I have one as odd as that sounds.

 

[skyfire322]

Well, the only thing those tests did were make me upset, but no seizure. Because of this, they want to keep me another three days at least. Also, they want to try to medixally induce one to see it on the eeg. *sigh*

 

[Kgartner]

Skyfire - you mentioned you had a few "auras" but no seizures. Did they show up at all on the EEG? I am asking because my daughter recently did a video EEG and had a handful of mild "auras" while she was in the hospital (very similar to the pre-seizure aura she has, but much milder), but because they did not show up as seizures on the EEG her neurologist says that they are definitely not seizure auras, but are an anxiety or panic reaction. So I am trying to understand how often an aura can be missed on an EEG.

Sorry to inject my own agenda in here, but I am trying to make sense of what is going on with her. Best of luck to you and I hope that you get the results you are looking for!

 

[skyfire322]

Auras can show up on an EEG (there were a few of them that did) but others don't. My doc said the same thing that it was an anxiety reaction.

I actually got the results of everything, and I'm more confused than ever. My doctor said that I have some psychogenic seizures but i definitely have idiopathic epilepsy. So apparently, I have it and I don't. Ummmmmmm.... Okay?

 

[Cint]

Auras can show up on an EEG (there were a few of them that did) but others don't. My doc said the same thing that it was an anxiety reaction.

I actually got the results of everything, and I'm more confused than ever. My doctor said that I have some psychogenic seizures but i definitely have idiopathic epilepsy. So apparently, I have it and I don't. Ummmmmmm.... Okay?

IMHO, you DO have epilepsy, idiopathic meaning they have NO idea as to why or how you developed seizures in the first place. I have idiopathic E. My seizures started out of the blue when I was 22 years of age. No health issues before then.

If it was just an anxiety reaction, then wouldn't everybody have psychogenic seizures once in a while? Psychogenic seizures are a doc's way of saying that since it doesn't show up on their monitors, then it is all psycho in us. A bunch of BS!!

 

[skyfire322]

IMHO, you DO have epilepsy, idiopathic meaning they have NO idea as to why or how you developed seizures in the first place.

If it was just an anxiety reaction, then wouldn't everybody have psychogenic seizures once in a while? Psychogenic seizures are a doc's way of saying that since it doesn't show up on their monitors, then it is all psycho in us. A bunch of BS!!

I'm calling BS as well. I'm getting a second opinion, because I'm more confused than ever, as he's changing his diagnosis on me based on one test. My sister had legit epilepsy for almost her entire life (even he brought the genetic thing up), and with the other three EEG's I had with this doctor, I've had a grand mal, a few partials, etc. and the results were off the charts.

During this specific one, I had a few "discharges" and a 'psychogenic' seizure and for the most part, my brain was a flat line. So he's pretty much changed his diagnosis based off of one test. Unreal.