Next Steps (VNS? Surgery?)

[jcroper]

First off, sorry for a double-post. I posted the same thing over in the Laboratory, but I'm new to the forum and am realizing that it's probably a lot less likely to get read over there.

I have tonic-clonic seizures since 16 which were mostly controlled by meds for several years. Switched meds in 2006 after some breakthrough seizures, from carbatrol to keppra to lamictal, which finally worked (though it brought with it increased insomnia and lovely migraines). Now I'm starting to have breakthroughs again on the lamictal. Looking to the future I'm taking a serious look at what comes next. We ramped up dosage on lamictal recently, and I just had a seizure with the increased dose last week. I've been on multiple meds before, though I don't tolerate it well (tends to make me stupid, and that's not really an option as a grad student). A recent combo trial of lamictal and topamax (trying to help migraines) made for the most hellish month I've had in a long time. (Note, low-dose amitryptiline has helped with the chronic headaches, which is good news.) So, all of that said... I have an appointment coming on the 30th and I need to go in ready to address what to do now.

Having gone through six meds now, I'm looking seriously at alternative/complementary treatments. I would love it if surgery could take away my problem, but I don't think it's a viable option now. I don't have time or money to go through the intense testing and the monitoring involved. On top of that, I don't know if I'm a candidate, with generalized seizures and difficulty finding a focus point(s).

I used to be strictly T-C seizures, and only in my sleep, but in recent years I've shifted to more partial seizures that happen any time of day. I'm considering bring up the possibility of a VNS, but I'm not entirely sure about it. It does seem to make some sense, especially if I'm moving toward having more partials.

The only other realistic option seems to be trying other meds. I don't know if this is my best approach or not, as I've spent far too much time in recent years switching meds around. I'm slightly apprehensive about the prospect of trying more and more meds. It seems to me like a patch job, just hoping to hold out a little longer. I've been through six meds/combos by now and there's not much end in sight.

So I'd like to go into my next appointment with some thoughts and options. I don't know if the VNS is a viable option, or if I should just stick with more meds, but I'd be up for anybody's thoughts. Epilepsy patients commonly seem to almost know more about epilepsy than our doctors, so I'm throwing this out there for an (un)professional opinion.

Thanks to all!

[Nakamova]

Hi JCroper --

I don't know much about VNS (other folks can chime in with info about that), but you might want to take a look at supplementing whatever treatment course you follow with alternatives such as neurofeedback and diet -- they've helped a lot of folks here.

[Birdbomb]

Welcome

Have you checked out my site? My message board is just VNS patients. We have individuals who represent every kind of result imaginable and every opinion in between. The site is neither pro VNS nor antagonistic.

We share our experiances.

www.vnsmessageboard.com

[jcroper]

No, I hadn't seen it. Will take a look, thanks.

As for diet, the only thing it seems to do is make things worse. Meaning that if I'm not careful and my blood sugar gets low it can make me more susceptible, but nothing seems to help my condition. Not to mention my GP would have a fit if he heard. Never tried neurofeedback though. I've never really heard much about it, and I'm not sure if my insurance covers it, but we'll see what we can see.

[Birdbomb]

To be honest with you, you should try everything NOT surgically related first. Diets can be altered as can medications but surgery forever changes you and can not be "undone". Components may or may not be all removed and then there is the possibility of irreversible damage, or you could have dramatic results. Only about 1/3 of those implanted have some sort of improvement. Research, research, research!

[Meetz1064]

go check out the diet option first, too. One of the other super-mods, RobinN, has a daughter, Rebecca, whose seizures are brought on by low blood sugar, and I believe there are several other members on here who have the same problem as well.

I had used the GARD diet to help control my seizures quite successfully until I was recently diagnosed as a celiac patient....now I am on a much more strict diet (BLECH), and have added two more types of E to my repertoire for a grand total of four.

You might consider using magnesium for the migraines (use the search function up above) and Robin can tell you quite a bit about it, too. She totally got rid of her migraines using it, and mine are quite minimal, when I remember to take it. *clearing throat in embarassment*

By the way, welcome to CWE. I'm sure you'll like it here. Plenty of info to be found in the Kitchen and Library...and a Padded Room to vent in if you should ever need to. Mr B, our host for this party, has built us an AWESOME home to hang out in...

So kick up your feet, and check out the nooks and crannies. Hopefully someone will bring you some decaf coffee that isn't burnt (like mine--I fell asleep again) or even some tea.

Take care.

Meetz

[jcroper]

Thanks for the welcome! It is nice that there's such a great forum here. There aren't many people I know who know enough and want to talk about it much. Actually, a good friend of mine who was great to chat with moved a while back which left only my doc to really talk seriously with. Anyhow...

My biggest hesitation with the diet option has to do with the history of my epilepsy. Seizures began within a month of two serious head injuries (a mountain bike accident, and an unfortunate collision with the bottom of a swimming pool). Nobody's been able to pinpoint the origin of the seizures. My EEGs tend to come out normal (though I do love getting up at 4a to do nothing for a few hours so I can go in sleep-deprived ), and my MRIs tend to look like borderline MS as much as anything but are never conclusive. Anyway, because they came on the heels of injuries, I have a hard time giving in to a diet. Is it likely to actually help? (I know, kind of a best-guess question.) I also worry about liver/kidney function, both of which have been a bit off in the past while. Are the liver/kidney concerns reasonable? At my last physical I was also told I have way too much fat in my diet and should eat more grains and fruits/veggies.

Low blood sugar only tends to exacerbate the problems, and really only for the past few years I've been on Lamictal. When I was on Carbatrol for several years it wasn't an issue at all. I'm thinking it's mainly a difference in how the drugs are processed. At least hoping so, on the other hand it could just be my epilepsy getting worse (this is my big concern at the moment). Managing with lorazepam PRN is a pain.

Thanks for the magnesium tip. Is that a daily regimen ? I might try adding that on or using it to replace the amitryptiline down the road. I can't seem to find much on dosage; is there a standard dosage? My biggest trigger is lack of sleep (gotta love the lamictal...). I find that when I'm able to get good sleep consistently, migraines are less of an issue. They're super finicky as to what helps when I get them, like they have a mind of their own. 10mg of amitryptiline at night has made a big difference, and even with its side effects is worlds better than Topamax. I've also found that melatonin can work as an abortive. Makes you nice and sleepy, but sometimes it will stop the headache dead. I've asked about cluster headaches, since mine seem to come in groups and fit the other symptoms, but I usually get the brush and less treatment so I don't bring it up anymore.

[Birdbomb]

VNS is not recommended for those with brain injuries. This is even stated in the Physician's Manual. Please contact Dispatch, she's also a member here. she has excellent information in regards to BI and VNS

[Dispatch]

HI and Welcome to CWE! I am still a newbee to the board. I am a Global Moderator on the VNS Message Board and have tons going on in my life right now, so don't get over here much. Birdbomb told me about you, so I thought I'd chime in on VNS with a Traumatic Brain Injury.

Not only is VNS not recommended for use in a person with TBI, it is "Unapproved For Use" per the Physicians Manual and Patients Manual. Persons with TBI were excluded from testing of the device from the beginning per the FDA, and remain excluded. Had I know any of this info before I was implanted for depression, I would have never had the implant. Prior to VNS, my internet computer skills were pretty much non-existent, so researching thru the net about things didn't happen. It was a bit over a year after implant and stimulation when I finally figured out what Google was and I was having horrific things going on, no answers from the docs (only that it was not VNS causing the problems and "I needed to accept I had a brain injury"), so I googled VNS and headaches, and whoa, I found out I wasn't a proper candidate due to TBI. Use of the device in me caused severe problems like falling down when stimulating, horrific headaches, constant nausea & vomiting-vomiting bad enough I got a GI bleed and had surgery for that, disorientation, confusion, worse balance issues, worse memory issues, worsening depression because I was so sick, high blood pressure, etc, etc. I now have had complete explant (I got lucky and the Neurosurgeon was able to remove the coils), and some issues have resolved back to normal TBI, and some issues are being controlled with medication. It is unknown if I will ever be back to the "normal" me since my TBI.

PLEASE research, research, research. I won't say there aren't others out there that are implanted who have TBI's. What I can say is I was never informed by my docs or the manufacturer that I was not a proper candidate. It turned into be an all about money situation that very well was on the way to costing me my life, and the end result wasn't worth it. Everyone responds differently to VNS. Maybe a person could say depending on the severity of the TBI would depend on how bad a person will react to VNS...it has never been tested so who can say that?

Stick around here and get to know the folks and about Neurofeedback and other alternatives to talk to your doc about. Hop on over to the VNS Message Board and become a Member and research there as well. Both these boards rock, and you can get tons of info.

Take great care!

[Cint]

Hi & Welcome jcroper,

After reading all of the other's opinions, I'll give you my worth.

After suffering severe burns from tonic clonic seizures along with complex partial seizures, trying many drugs, having a left temporal lobectomy (which is also considered as a mild TBI, with memory loss, emotional issues, etc.), I had the VNS implanted back in 1998 and for me, it is a success. Of course, I have had a few issues with it initially, but as far as seizure control, I haven't had a tonic clonic in years now and the complex partial seizures I can usually stop with the magnet, or at least they're not as severe as they used to be. I only have a complex partial seizure every 6-8 months now, compared to 4-5 a day like it used to be.

I hope you find something that works for you.

[jcroper]

Thanks for the heads-up, Dispatch. I regularly use PubMed for thesis research so I can dig around on my own, but do you know of any studies off the top of your head that deal with VNS and BI? As far as I know my injury was particularly mild. It's like I shook things up just enough to bring on seizures, but left everything else intact. I had one PA point to a small spot in one of my temporal lobes and tell me that's where my seizures come from. Of course, that particular spot has since disappeared. I know what you're saying about wondering if you'll ever be back to the normal you. So many times I've wished I had only done things just a touch differently that day.

Cint--if you don't mind my asking--do you know if there was anything unique about your situation? How long did you wait before giving the surgery a try?

Right now may not be the right time for me to go for surgery or implants, but I'm also not thrilled with the prospect of spending the rest of my days trying medication after medication with mediocre results.

[RobinN]

Nobody's been able to pinpoint the origin of the seizures. My EEGs tend to come out normal (though I do love getting up at 4a to do nothing for a few hours so I can go in sleep-deprived ), and my MRIs tend to look like borderline MS as much as anything but are never conclusive. Anyway, because they came on the heels of injuries, I have a hard time giving in to a diet. Is it likely to actually help? (I know, kind of a best-guess question.) I also worry about liver/kidney function, both of which have been a bit off in the past while. Are the liver/kidney concerns reasonable? At my last physical I was also told I have way too much fat in my diet and should eat more grains and fruits/veggies.

Low blood sugar only tends to exacerbate the problems, and really only for the past few years I've been on Lamictal. When I was on Carbatrol for several years it wasn't an issue at all. I'm thinking it's mainly a difference in how the drugs are processed. At least hoping so, on the other hand it could just be my epilepsy getting worse (this is my big concern at the moment). Managing with lorazepam PRN is a pain.

I've asked about cluster headaches, since mine seem to come in groups and fit the other symptoms, but I usually get the brush and less treatment so I don't bring it up anymore.

I can only answer from our experiences and my extensive research on the subject, and my Opinion.

I believe NUTRITION is huge. I believe the body has incredible powers to HEAL itself. Give it C*** and the body and brain can not heal or function properly, and with the added insult of drugs, it tends to deteriorate slowly. New issues arise, that at first seem unrelated, but over time I think we will see that it is an environment that is all inter-related.

Liver / Kidney is very important to brain function. I put a Liver thread here with some info that I have found. I too am working on this area of my daughters health, because this is the reason the blood sugar is not balanced. It is also the reason that hormones play a roll in seizure disorders.
You might also consider adrenal function. I believe there is also a thread on that. I would find them for you, but I am running out the door. Let me know if you can't locate them.

I am more familiar with migraines, as mine were hormonal. I do know there is a great response to headaches and neurofeedback. We do appreciate headache / migraine dialog, as it can be related to seizure activity.

Also, consider how your intestinal tract can play a roll. If there is inflammation, it can also be causing some of the neurological issues. You might not have any symptoms of this occurring BTW. With seizures there is a threshold. Yours is lowered for a few reasons that you state. It doesn't mean that you can't strengthen those areas, to support healthy brain function.

That is my opinion.

[Dispatch]

HI jcroper!

I know of NO studies ever being done or currently being recruited for VNS and TBI. The manufacturer of VNS acquired the patent in Dec. 2007 to treat stroke and TBI with VNS, but it will take years to do the studies, gather all the data, and present to the FDA for approval. VNS is still currently "Unapproved For Use" in a person with TBI, and the FDA will have to be the ones to change that.

Take great care!

[Cint]

Cint--if you don't mind my asking--do you know if there was anything unique about your situation? How long did you wait before giving the surgery a try?

If you're asking about the VNS surgery, I decided to give the surgery a try when it first became available because my life was such a mess from the brain surgery I had 8 years earlier. If I had it to do over, I would certainly forego brain surgery. For me, it caused more seizures, memory loss, along with deep, deep depression, that never went away. They sent me to a neuropsychiatrist who then diagnosed me as bipolar. So he put me on drugs for that disorder along with seizure meds, to the point where I wasn't functioning at all. A zombie. So when I heard of the VNS, I was willing to try it so maybe I could at least get off some of the mind altering drugs.
As I said earlier, the VNS has significantly reduced the seizures, and the depression has improved also, so I'm not taking as many drugs for depression as I once was.

IMHO, a temporal lobectomy is comparable to TBI. After the surgery I had terrible memory and speech issues so they sent me to a speech therapist who convinced me that a brain surgery like I had is a mild TBI. So my point is, they do VNS surgery on people with TBIs.

Cindy

[jcroper]

Thanks everyone for your thoughts! I'm heading out of town right now but you've given plenty for me to think about this week. I'm sure I'll have more questions when I get back

[Bernard]

Hi JC, sorry I'm late to add my

... Having gone through six meds now, I'm looking seriously at alternative/complementary treatments. ...

Drug Resistant Epilepsy

Proactive Prescription for Epilepsy

Chart of Alternative Treatments - click the link of an item in the chart for more information about a given treatment option.

... As for diet, the only thing it seems to do is make things worse. Meaning that if I'm not careful and my blood sugar gets low it can make me more susceptible, ...

... ... Anyway, because they came on the heels of injuries, I have a hard time giving in to a diet. Is it likely to actually help?

Diet can stimulate the body to produce a natural anti-convulsant compound (drug)

Healthy lifestyle triggers genetic changes

Low Glycemic Index Treatment (LGIT) Diet - good for seizures, good for blood sugar disorders

My wife is borderline hypoglycemic and low blood sugar is a trigger for her. She has found that pseudo-LGIT diet has helped tremendously (it's not a 100% solution, but it does help significantly). She does not limit total carbs as called for in the LGIT protocol, she only limits simple carbs (not complex carbs).

HTH!

[RobinN]

Also:

Atkins for Seizures