My Personal N=1

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A rebounder like MAB has is great especially for getting your lymphatic system moving and detoxing right. The circulatory system for blood has the pump action of the heart to keep it going. But the lymphatic system relies on the action of the muscles around it to keep things flowing.

I had a rebounder but I gave it away when I moved here. Might buy a new one.

And hooray for MAB for ditching the cigs and getting the lungs back in shape. Maikai! That's Hawaiian for congrats/well done!
 
Joyful said:
The longest I have ever gone w/o a seizure was about a year ago when I went 8 weeks seizure free. That was amazing. It just so happened to coincide w/ the time when I had decided we would cut down on the gluten. This was originally done for my son's benefit - I just joined him to make it easier on him.
Well, he got fed up and complained so much that my husband said it wasn't worth the trouble - just let him eat what he wants. So, we stopped eating healthy and the seizures returned.
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Isn't it fun when you start seeing those connections? I hope you can get your family on board with paleo. It is so much easier to do together.
 
MAB, I remember you posted once that you drink a ton of water, and really restrict salt--and it sounds like you keep very fit. Is that right? You and I talked once about salt balance and seizures--did you ever look into replacing salt? I really wonder if your seizures could be in part due to low sodium. I didn't know at the time that you did so much exercise too! Just a thought. I know sodium balance, if it's off in either direction, can really aggravate seizures. I know it does mine--the ones I have that are like yours (the partials that just keep coming). Your comment is what made me start adding in more salt and those seizures really improved--but that could just be my case.
 
One thing that often happens when people first go paleo is that they start flushing out (literally) a lot of excess fluids that hang around in the tissues due to inflammation caused by grains. As all this fluid goes out, though, a bunch of electrolytes go with it. The result can be really bad nighttime leg cramps for a lot of people even ones who don't have epilepsy. It's easily fixed by salting your food. I go by my tastebuds on this. When I have enough sodium on board, salt doesn't taste good to me.
 
lindsayschu2 said:
MAB, I remember you posted once that you drink a ton of water, and really restrict salt--and it sounds like you keep very fit. Is that right? You and I talked once about salt balance and seizures--did you ever look into replacing salt? I really wonder if your seizures could be in part due to low sodium. I didn't know at the time that you did so much exercise too! Just a thought. I know sodium balance, if it's off in either direction, can really aggravate seizures. I know it does mine--the ones I have that are like yours (the partials that just keep coming). Your comment is what made me start adding in more salt and those seizures really improved--but that could just be my case.
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Yes, my sodium level is frequently too low. I have started to use a lot of sea salt. Sometimes I even mix a 1/4 teaspoon of salt in a drink to get my sodium level and blood pressure up a little. It has really stopped the leg and foot cramps if my sodium is a a good level.

The biggest trigger for me seems to be odors, even odors that I find very pleasant. I have an oil difusser and loved to diffuse essential oils until I realized it was causing seizures every time I sat in my rocking chair, checking emails with the difusser running. Of course I can't control the odors in public but I do what I can at home. I want to hang a sign on my office door that says "if you smell, don't come in" but it wouldn't be very good for business.
 
I doubt my husband and son will ever go paleo. The only reason they support me on this is b/c of the epilepsy. My husband is really good about supporting me in my eating habits - just as long as I don't try to make him change his!
 
AlohaBird said:
A rebounder like MAB has is great especially for getting your lymphatic system moving and detoxing right. The circulatory system for blood has the pump action of the heart to keep it going. But the lymphatic system relies on the action of the muscles around it to keep things flowing.

I had a rebounder but I gave it away when I moved here. Might buy a new one.

And hooray for MAB for ditching the cigs and getting the lungs back in shape. Maikai! That's Hawaiian for congrats/well done!
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My massage therapist explained how to massage to help drain the lymphatic system drain. Each morning after I shower I massage coconut oil into my skin the way she told me. I hope it is helping. It does help my skin but it's kind of messy.
 
MAB said:
My massage therapist explained how to massage to help drain the lymphatic system drain. Each morning after I shower I massage coconut oil into my skin the way she told me. I hope it is helping. It does help my skin but it's kind of messy.
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That's part of what my Hawaiian healer is working on too.
Purrrrrrrrrrrr
I just came from a session with him.

I think I am going to cut my pheno tablets in the pill splitter and try 1.5 pills instead of 2. I set up my pill box for the week on Mondays. It has been three weeks at this level with only one partial arm twitch incident which may have had the eating out at the fundraiser food to blame. I feel ready for the next level.
 
OK. Had another twitching episode this morning. It always seems to happen right before I'm going to get up anyway. I'm starting to think that there could be a hydration (or lack thereof) component to this. I vaguely remember waking and being super thirsty but rolling over and going back to sleep due to laziness. Hmmmmm.

I'm not ready to declare failure on this level of meds. I think my brain needs to adjust and get used to the lower level kind of like a junky going through withdrawals.
 
AlohaBird said:
OK. Had another twitching episode this morning. It always seems to happen right before I'm going to get up anyway. I'm starting to think that there could be a hydration (or lack thereof) component to this. I vaguely remember waking and being super thirsty but rolling over and going back to sleep due to laziness. Hmmmmm.

I'm not ready to declare failure on this level of meds. I think my brain needs to adjust and get used to the lower level kind of like a junky going through withdrawals.
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AlohaBird, I hope it's just an adjustment period.

What exactly do your twitching episodes feel like? Is it like when someone's eyelid twitches? Sometimes my left waist area twitches. All of my symptoms affect the left side of my body.
 
Mine is my left arm. It starts flopping around like it has a mind of its own. When I pinch around the left arm with the right hand the left arm feels like it belongs to someone else. If I can get a good pinch on the nerve bundle in the front side of the underarm area, it shuts the twitching off like a light.
 
Dammmnit! It happened again this morning. I can deal with it but it is annoying. It does seem however that every time I get one of those left arm twitchies, I am becoming more cognizant of what is going on and better able to deal with it. These episodes don't leave me wiped like a TC but they are still disruptive to my sleep.

Re MAB's question about the left side, this morning I noticed that my left eyelid twitches first, then the left arm.

But, if I could guarantee that I would only have these partials and only at night and go completely unmedicated, I would take that tradeoff.

My Hawaiian healer guy said to be aware that a lot of toxins may be built up in my tissues and that the work we are doing may get some of that circulating and flushed out better but the process can sometimes be a bit rough as all the gunk comes out at once. Perhaps that is what is going on here. He called it a "healing crisis".
 
Aloha--you got these twitches right after cutting, right? I noticed I had a lot of partials after each cut on topamax (usually on day 4 or 5, but Topamax has a long halflife). At least in my case, they were temporary--it didn't reflect that the the lower dose wasn't going to work, because it did. But even though I was going slow and low, the reduction just caused an increase in activity until I got used to the lower dose. I couldn't get around it. Not sure if that is the case with you. My overall seizure activity went way down once I greatly reduced Topamax since in my case, the drug itself was a great part of my problem. But sometimes reduction seizures just happen.
 
Thanks for that Lindsay.^^^^

Yes, about five or six days in is when they seem to come but Pheno has a very long half life too. And I do believe the drug is a big part of my problem too, not the solution. So, I'm willing to put up with a few partials like this.

I am really seeing a correlation to my hydration also. Last night I had to get up in the middle of the night to let the dog out so I took the opportunity to drink a can of my coconut water. Then went back to bed and slept peacefully through til late morning.
It's a tradeoff between not wanting to drink too much and be dashing to the bathroom all night but still staying hydrated.

ETA My Hawaiian healer guy has also been on my case to drink more too. He said that all the toxins that are getting released from the tissues need extra hydration (above and beyond what you need already on a tropical island) in order to flush out right (pun semi-intended).
 
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Well, I'm midway through the second week at the 1.5 pheno pills level and things seem to be evening out. Sleeping through the night peacefully.

I've ordered some progesterone cream in order to give it a try. I found one called Natpro that claims to be all natural, no parabens and all that. I figure it can't hurt to give it a try.

In a perfect world, I would go to the doctor and have my hormone levels tested before trying this but, with where I live, I am rather on my own for specialty care like this. Anything more than a sore throat or a scraped knee and the Molokai General Hospital ships people out to either Maui or Oahu.
 
About the progesterone cream, I've been using it as well. All natural - made by a friend of ours who is a pharmasist as well as a strong believer in natual remedies.

I believe it helps balance the estrogen levels as well as helps w/ the seizures. (not sure)
I was so mad when I learned about all of the parabens & junk in the Depakote. It can act as estrogen, throwing everything off. It's also known to cause cancer. Ugh!

Do you know if you'll be able to cut back on your levels ? I'm trying to.
It may control the seizures, but it's slowly killing the rest of my body in the process. Sorry, but that's how I feel.
 
I totally agree. I am going to get the phenobarbitol out of my system first and then work on the Depakote. The dep potentiates the pheno so if I cut both at once or did the dep first it would be like dropping the pheno really sharply.
Once this entanglement is sorted out, then I can work on the dep.

Wouldn't it be nice if someone had told us about the parabens etc?
This is why I hate it when people keep going back to the refrain, "You have to clear this with your doctor first. Don't do anything on you own."
Well, I'm sorry but I think I actually know more than my doctor does and I sure as heck care more.
 
I know what you mean. I so want to get off of these meds, but I can't just stop them. Since my last seizure wasn't that long ago, there's no way the dr will let me reduce anymore.
I agree with you - WE know our own bodies better than any dr.
 
On the creme--You might want to be very conservative. A lot of people have found that a little goes a long way. And if you put it on fatty areas, it can build up over time in fatty tissues and you can get too high a level, which can backfire--insomnia, racing heart, fluid retention, etc. I'd just maybe suggest reading up on the symptoms of too much progesterone and just watch how you do and then adjust accordingly. They suggest putting it places that have veins and not a lot of fat, like the tops of hands and feet, neck, etc. I overdid that for a while and backed way off--I'm now on oral, but mostly because it breaks down into byproducts that help sleep better than creme and that was the main reason I went on it at the time. Good luck!
 
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