strict med schedule and violent seizures

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Sorry for being so detailed, but I didn't think it was humanly possible to sweat that much as on this high fat diet during excersise.

Why exactly does the body shed more water? Does it raise the body temperature? Is this why it is called "low carb flu"?
 
yeah, I tend to be one of those sugar adicts... from fruit to cookies, you got me. But, I am trying to switch it to fruit only. Thanks! Gotta go out 'MAD shopping' this weekend- entirely new kitchen 'wardrobe' coming up!
 
The body sheds the excess water it has been holding onto because any LC diet (be it Atkins, LGI, paleo, etc) is anti inflammatory.

Excess carbs particularly grains irritate the lining of the gut causing something called "leaky gut syndrome" which is almost as gross as it sounds. Microscopic particles of partially digested food leak out through an unhealthy gut lining and get into the body as a whole where they are not recognized as food but rather as foreign invading entities.
The body then sounds the alarm and mans the battlements. Which means inflammation. When this is a chronic state, you may not even notice it but if you go low carb, it is easy to shed 10 lbs of pure water in a couple of weeks.

There is not generally a fever involved in the LC "flu". It is just named that because the electrolyte imbalances can cause generally tired achy feelings. You need to be sure to salt your food if you feel like it and I would recommend a good Magnesium supplement too. Maybe some coconut water if you can find it. Nature's Gatorade.
 
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My med schedule is 7am, 1pm and 7pm. I take my meds 'around' that time, not right on the nose. There are very few times that I've taken my meds an hour early or an hour late. I've never had any problems doing either. But everyone is different when it comes to taking their meds too late or too early.

How long have you been on these meds? Sometimes when someone is on a med for a long time the dosage of the med might need to be changed or the med might not be helping them any more and it has to be changed. I know I went through this.

When I was first diagnosed with epilepsy, 12 years ago at the age of 27, it took a good long while to find the right meds and dosages for me. The meds alone didn't really seem to be doing much so my neuro suggested getting a VNS, I've had one since 2007, and it has helped a lot. My seizures decreased greatly and aren't nearly as bad.

How long has this been going on? Was the VNS helping when you first got it? How long have you had the VNS? Has he changed the settings on your VNS? My neuro has had to increase the settings quite often. How often does your nero test the battery?

In 2013 my seizures started increasing and the VNS really didn't seem to be doing anything to stop the seizure or bring me out of it when the magnet was being used. My neuro tested the battery and we found out that it was dead so I had to have a new one put in. Once that was done I started having less seizures and when the magnet was used it would stop the seizure from coming on or bring me out of it faster.
 
Hi valariedl,
So, basically I have a VNS which doesn't work anymore (in stopping seizures at least. It works) Ironically, it was put in when when I was young and just developing as a young woman so the doctors put in as you would a man. You think they read the charts. Needless to say, it is slipping towards my armpit cause I don't have pecs. Besides that: I have been on almost med possible, with Oxycarbazipine being the most recent. My doc is monitering the levels monthly. While the seizures have gotten better, I have noticed a pattern: I tend to have absence/petit mals at about 3pm each day. Strange I know. However, I have noticed that steady exercise (1 - 2 miles) helps in cooling them down. Exercise is for more than losing weight!!!!!!!
I was diagnosed at age 4 I am now 30. I know the ins and outs of E like the back of my hand, which is why I am so disturbed/mystified by this.
 
PixiDust said:
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However, I have noticed that steady exercise (1 - 2 miles) helps in cooling them down. Exercise is for more than losing weight!!!!!!!
I was diagnosed at age 4 I am now 30. I know the ins and outs of E like the back of my hand, which is why I am so disturbed/mystified by this.
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I just wanted to say that I hope it works well with your second try of the MAD diet and that you are careful. With the strict med schedule I suspected that someone like you could possible rush into ketosis in no time at all, and being sensitive that could potentially be a bad thing. I've been reading some and the dietary change does seem to put some strain on the body. So I thought it would be irresponsible of me not saying anything. Alohabird already said it but, yeah.

As a note, there seems to be very little papers on epilepsy and exercise, but you can find papers on schizophrenia/bipolar and exercise. Schizophrenia affects the temporal lobe + front. So my guess is that there would be similar mechanism in benefits of exercise?
 
PixiDust said:
Hi valariedl,
So, basically I have a VNS which doesn't work anymore (in stopping seizures at least. It works) Ironically, it was put in when when I was young and just developing as a young woman so the doctors put in as you would a man. You think they read the charts. Needless to say, it is slipping towards my armpit cause I don't have pecs. Besides that: I have been on almost med possible, with Oxycarbazipine being the most recent.
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I'm not saying that your VNS doesn't work I'm just saying that the settings might need changed or it may need a new battery.

When I first got my VSN it was put on very low settings. I've had my VNS on several different settings through the years so these are just examples, I don't know if these were ones that I had actually been on.

When I had my VNS put in the first setting might have been staying on for 10 seconds then going off for 3 minutes, then coming back on for 10 seconds and going back off for 3 minutes. The settings were then increased to something like staying on for 15 seconds and going off for 2 minutes then coming back on for 15 seconds then going off for 2 minutes.

At times my neuro may have only had to change the timing of the VNS. It may have stayed on for 15 seconds but gone off for 1 minute then back on for 15 seconds then off for 1 minutes. Sometimes he would only change the length it was on like staying on for 20 seconds then going off for 1 minute then staying on for 20 seconds then going off for 1 minute.

I believe right now my VNS is set to stay on for 20 seconds then go off for 30 seconds then come back on for 20 seconds then off for 30 seconds.

Getting to figure out the settings of the VNS is sort of like finding out what the right dosage of med you should be taking and it takes some time to do it. Taking 100mg of a med isn't going to work for everyone. Some may need a higher dosage and some may need a lesser dosage. Through the years the dosage of your med may even need to be increased, the first dosage you were taking may not be strong enough anymore. This is the same with the VNS.

I've been on several different meds through the years. I am still taking meds along with the VSN and it took some time to figure out which ones and dosages worked best with it. I am still having the dosages of my meds changed at times, either increased or decreased.

The battery life in a VNS is just the same as a regular battery, it's not going to last forever. The more often it is used then the faster the battery is going to die. Your VNS is coming on regularly on it's own, not just when you use the magnet, all day long and it might be on for 2 hours total or it could be on for 5 or more hours depending on the settings. If you use a flashlight for 2 hours a day then the battery is going to last longer than if you were to use the flashlight over 5 hours a day.


When your VNS was put in your body may not have been fully developed which is why you are having problems as to where it is moving in your chest. I know that the muscle in my chest was cut into when my VNS was put in and my left breast, which is the side the VNS is on, hangs lower than my right breast.
 
yeah-little on epilepsy and exercise, but lots on stress and exercise. For me, running or dancing is like letting it all go, just forgetting so most of daily stress seems to dissapear. One just needs that outlet. Thanks for thing on beginning ketosis so soon.... good to know so I know to take it easy. Restarting MAD is not gong to be easy, as we all know, but I will keep you, or everyone, updated on it if you like. Might be good for others who are starting it but don't know what to expect.
 
I had the battery renewed about 5 years ago, and it was recently tested so I know it is working.... I will talk to my doc about this, equalizing out meds with the VNS. I don't want something in my body which is only impairing the effectiveness of the meds. Good point!
 
Hi Pixidust. I have no experience with diet changes to help control my epilepsy but I do have some experience with some of the mess you listed. I'm assuming that you've tried multiple meds over time and that is why you're on a mixture of a few different ones so I don't know how helpful my input will be but here it goes. I've been trying a few different meds over the last couple of years, still haven't found one that works for me but have found a few that definitely don't help me. I know that everyone has different reactions to different meds. Clonazepam was prescribed to me to help control stress and seizures, it made both much worse. I typically have a seizure about every 2-4 months while on meds, I was having 2-3 a week while on clonazepam. I just started oxcarbazepine and my doc told me that I need to take it twice a day, as the levels of the generic form of this med do not keep a constant level in my blood. He told me to watch for dizziness and blurred/ double vision which would be a contributing factor to getting my insurance to cover the brand name, Trileptal, might not have spelled it correctly, but the brand name is an extended release tablet that only needs to be taken once a day. Also, oxcarbazepine is well known to lower your electrolytes, and will need you to drink extra fluids to compensate. Between the meds spiking and dropping off and low electrolytes, these could possibly be contributing factors to the problems you're having. I don't know if any of this helps at all, just throwing it out there.
 
hey gbpackfan,
yeah, it does make sense. The thing on Oxycarbazapine lowering electrolytes, so you need to replace them, makes total sense. When I just started Oxycarbazypine, I did a field school, which can be very taxing- and you need a lot of water or you will faint from the sun. So, I drank I don't know how much water each day, with electrolytes, and had about 3 - 4 seizures in 5 weeks. THAT was the biggest miracle for me! I guess I had just figured I only needed that extra water during that time...but I'll make sure to put into my regular pattern! As for clonazapam, it was prescribed for anxiety, which I am positive I didn't have, but hey. My seizures went down like crazy, so I have to give the doc that. So Yeah- DEFINITLY HELPS!!!!!
 
PixiDust said:
I had the battery renewed about 5 years ago, and it was recently tested so I know it is working.... I will talk to my doc about this, equalizing out meds with the VNS. I don't want something in my body which is only impairing the effectiveness of the meds. Good point!
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When was recently? I see my neuro 4 times a year. I have my VNS tested every visit. I saw him then 4 months later on my next visit when he tested the VNS the battery had died.
 
recently would be about 3 months ago..... all is good and working from their perspective.. though honestly I gave up on the thing long ago because I don't have an aura early enough before a seizure to have time to grab it and use it. Oh- and for those who do have one - cow magnets work just as well as the medical ones they pass out. I know, gross, but it's equal the strength.
 
PixiDust said:
recently would be about 3 months ago..... all is good and working from their perspective.. though honestly I gave up on the thing long ago because I don't have an aura early enough before a seizure to have time to grab it and use it. Oh- and for those who do have one - cow magnets work just as well as the medical ones they pass out. I know, gross, but it's equal the strength.
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My neuro told me the same thing about using the cow magnet.
 
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