My Personal N=1

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I have one of those vape things for CBD oil but I have heard that they are very helpful getting off the cigs too because they fill that need to do something with your hands.

ETA:
Speaking of CBD, I think I'm adding the CBD capsules to the list of stuff that I've tried that don't really do much one way or the other for me and are expensive enough that I'm no longer going to bother with them. Even when you buy them in serious bulk, they are still $2 a pill.

I set my pill box up once a week and I completely forgot to include the CBD recently. I slept fine. Didn't even notice there was something missing from the box for a couple of days.

OTOH, I enjoy the vaporizer and while I know it doesn't really deliver that much CBD, I think it gets it more directly into your bloodstream. Also perhaps the concentration on one's breathing is what is helping me to feel sleepy in the evening. In any case, I find it relaxing.
 
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I really believe that medical marijuana helps reduce the frequency and intensity of my seizures. I will quit smoking and I didn't want to use my current situation as an excuse but when I can get a few things in life a little better under control, I will.
 
I'm waiting on my first crop of medical MJ now that I am all legal with the state of Hawaii.

I think it probably does help and I'm certainly willing to give it a try.

The CBD extracts though are from hemp. I'm not sure how much of a difference that makes.
 
Hey Aloha..
That coconut water is very refreshing, I'm giving my girl 1 cup daily but will slowly increase to 2 cups. As long as her bowels are happy, I have noted the risk of diarhoea.

I also wanted to let you know that you have been an asset to this forum and I'm not the only one inspired by your journey to ditch the meds keeping in mind that safety is paramount.
 
I'm glad you both like it.

The side effect of loose bowels is really more from coconut products that have a lot of oil in them such as coconut cream, and of course, the oil itself. The water shouldn't be a problem in that department.

Make sure you are getting a brand with no additives. Some brands add artificial or real sweeteners.

The only reason to not go completely hog wild on the coconut water is that it does have a fair amount of carbs in it. Coconut sugar has a lower glycemic index than regular sugar but it's still sugar.

I limit myself to one can a day.
 
On the advice of my Hawaiian healer guy, I am actually trying to cut back on the c-nut H2O a bit. He says that it is something he recommends to haloes (non-native Hawaiians) at first to mix with the very tart noni juice otherwise most haloes wouldn't be able to stand the noni's intense taste. But he says he thinks I may be overdoing it a bit. The way he put it is, "It's not supposed to be candy".

When the weather is hot it is really easy to chug down a lot of the stuff just because you are thirsty. I'm finding it very refreshing to take a little c-nut water and mix it with a big glass of soda water instead.

And I'm taking my noni juice the way he takes his, straight out of a shot glass. He does 4 oz/day. He let me taste his home brewed noni juice and I think it is substantially stronger than what I buy over the net. He probably lets it ferment longer.
 
Noni is a fruit that grows here in the tropics that is then fermented and the juice extracted. The juice is rather bitter but very high in multiple nutrients in addition to the gut friendly bacteria because it is fermented (in the same way that yoghurt is "probiotic" and good for your gut).

There are some preliminary medical trials underway using noni as a cancer preventative and suppressant.

Noni juice has been considered medicine here for millennia.
 
So, I have a new neurologist as of yesterday and he is actually competent and a nice person. :)
Once he figured out I knew a bit more about epilepsy than "the average bear", he stopped dumbing down his vocabulary and started talking to me as if he were talking to a colleague about a case study.

He respects my priorities and decisions about my care and gives honest and complete answers about things like medication side effects.

Next on the agenda are a DEXA scan of my bones, a new MRI, and then a long term inpatient VEEG.

He said it wouldn't be a good idea to bring the dog with me for the VEEG. The whole idea is to provoke a seizure. If the dog alerted me, it could get in the way. So I need to arrange for dog sitting.
 
AlohaBird,
What a relief that you have a respectful neurologist in your camp and who actually is a flesh and blood human being with brains and heart and enthusiasm for treating you. And that he knows Lorenzo can't come to the EEG because it would run counter to the purpose of the test -- NOT because it would be INAPPROPRIATE for dog to be in bed with the patient and the electrodes and the wires and the console [sort of like a TV Remote Control]. The hospital workers would be besides themselves because of the extra work it would mean for them, I think.

WHAT FOLLOWS IS A RANT AND IS ALSO FICTION...
I am noticing that the language human beings use to coerce and control covers up what is so simple and so understandable. Why can't we just be simple and understandable? In this case, a dog in a VEEG situation likely would mean more work for the workers. They can't do it. God knows, they are overworked and underpaid and we all know that. Why can't they just talk straight instead of setting up a situation of Control and Power Play by shaming you for even having the idea of bringing Lorenzo. The shaming word is the power play word, namely INAPPROPRIATE.
I know I got off subject and nobody even used the word INAPPROPRIATE but, believe me, that word was going to be spoken if the subject of Lorenzo's presence had not been closed in the doctor's office. So what I am saying is merely hypothetical. But it is just so sad.

You have an awful lot of work ahead of you and it is a long road. Best that you get started. I really am so glad.
 
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The way he put it was more that the dog's being there would be *counterproductive* not so much that it would be inappropriate. The dog's whole raison d'etre is to stop me from having a seizure when the whole point of the VEEG is to get me to have one.

Also from my POV, I am probably not going to be in any shape to take care of him given the things they have planned for me like sleep deprivation, etc. I have the feeling that the stressors they will be putting on my for this particular purpose would also be very stressful for the dog. He wouldn't understand that there was a method to the madness.
 
OH, AlohaBird, I really do know what the neurologist said about Lorenzo and I do understand why his presence would be counterproductive. I was just taking off because I was thinking of how arrogant neurologists and medical people would be if they heard that a dog was going to come to the VEEG -- INAPPROPRIATE they would say and they would be huffy. [I wrote when I was thinking about Cuppycake's experience.]
I find that when I am writing forum posts, I get confused because I often think the person reading them understands me perfectly. That means someone whose sense of the ridiculous is JUST LIKE MINE. I happen to enjoy you a lot because your sense of the ridiculous is wonderful, but we are different people and our flights of fancy take off from different airports. I need to learn this lesson. Over and over again.
As the Zonisamide leaves my system I am noticing that people around me are put off by what I say and I think it is because the Z has heightened my tendency to think that everyone understands me. I say very off-the-all things, even more off-the-wall than what I write. I think it is a good sign that I am noticing!
Sounds like that EEG is going to be hard work. Do you know when it will take place?
 
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Yes! Self awareness is a good thing! And I love the metaphor about flights of fancy at different airports. "Now boarding Bidwell Flight 234 at gate 56......."


And I did understand your rant not as being directed at my doctor in particular but as a rant against the arrogance of (too) many in the medical profession and the nasty tactics they use to get patients with minds of their own to toe the line.

And I wasn't put off in the slightest. I'm just so pleasantly surprised to find a good neurologist. You were just comparing my surprisingly nice experience with what too often happens.

Maybe people understand you better than you know......



ETA:Not sure when the tests are going to take place. They are going to try to get the DEXA and MRI scheduled for the day I check in for the VEEG so I can get those two out of the way first. So the first two will be done at Kaiser and only the VEEG at Queens. So this is two bureaucracies getting their act together together.
 
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Well, look out for flying pigs and ice skating demons...................

I think Kaiser just got efficient. I also think the fact that my new doctor is from Queens Hospital has a lot to do with that. He puts in orders for stuff to get done and it gets done.

My appointment is for this coming Monday to get my DEXA scan and new MRI done in the morning at Kaiser then get transported over to Queens to check in for the VEEG. They said it could run anywhere from 3 days to a week.

I am asking a friend to come stay at my place and keep the dog company. I am going to miss my furry friend. The last time I left him for any length of time was when I went to Africa and climbed Kilimangaro. But then my Dad was still around and happy to have the canine companionship.

Any "pro tips" from folks who have done an inpatient eeg like this? I think the worst part is going to be boredom.
 
Well, I've been home a few weeks now and I'm finally feeling good again.

The plan (with the new neuro) is to step back on the Valproic Acid first. I take four capsules a night so he is breaking the titration into four quarters. I have been taking 25% less (only 3 capsules ) since the first of this month. Then another pill less on the first of next month. Then one more off the next month. This is a very conservative titration schedule but I'm willing to work with it.

I'm sleeping great. While I have relegated the CBD extracts to the "it was worth trying but it doesn't really do much" category, I have recently discovered a different product called Holden's Hope. I was made aware of it by a poster named Steve Coats here on CWE. It is a cannabis paste that is still "street legal" because of the low TCH content but it includes the whole plant gently cooked in coconut oil and then ground up into the oil to become a paste.

The thing that is missing in the CBD extracts is that whole plant effect. It has been termed in the medical literature "the entourage effect". Also the CBD extract are mostly extracted using high heat and solvents which probably kills off a lot of the good stuff before it gets to you.

This paste is really something though when it comes to me being able to get to sleep and stay asleep straight through 8-9 hours. I think it will probably be useful in easing the transition off the meds. You don't get "stoned" at all, just really relaxed.
 
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Well I'm glad that you are feeling better. As far as CBD's go, THC is a CBD. CBD concentrates from cannabis seem to be much better for E. Hemp seed oil is a byproduct of hemp that is bred to be used for its fibrous stalks and leaves, not its THC and CBD rich flowers. Cannabis IS bred and grown for its high THC and CBD levels. Don't give up on the MMJ yet, it's still 'new' to scientific research. Research suggests that different forms of the CBD compounds work better for different types of seizures. And if you're not "getting stoned", what the hell is the point?...
 
The point is sleeping through the night without having a seizure. :)

And I am also still working on an MJ cultivation project. Got some cute plants about 8-10 inches high. And I am not opposed to a few puffs if a friend brings some over. I just have to be very careful with the really strong TCH kind. I get edgy and nervous. This high CBD stuff is like the mellow part of being stoned.
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Evidently the strain this Holden's Hope paste is made from is about the same TCH/CBD ratio as Charlotte's Web.

Yes, it is still new and very interesting research. One of the things that I think the paste does for you is allow you to really soak all of the components of the plant in with all their complicated interactions that we aren't anywhere near understanding fully. I think it being in a base of coconut oil (with all those wonderful MCTs) is a plus too.

I really don't like being anywhere near cigarette smoking and I also don't smoke MJ often just because I don't like the scratchy throat feeling. I always did like a good batch of magic brownies back in the day though. I bet you could put this Holden's Hope paste in cooking.
 
Yeah, I know. I was just messing with you and also playing on the assumption of a lot of people who think MMJ is just an excuse to get high. I've heard of Holden's Hope and Charlotte's Web. Federal law will not allow anything to be shipped from state to state that is not a product of hemp, or Cannibas Sativa. Cannibas Indica is a plant that is illegal to be grown or processed on a federal level. With that being said, local products in a state that has allowed MMJ are what we have to choose from and there is no quality control or strictly mandated product testing in place yet so we never can be 100% sure we are getting what we need from concentrates. Indica has multiple strains that are CBD and THC rich. While products that are being sold and shipped from state to state are providing some relief, they do not contain all of the extracts that could be therapeutic to people with E or other ailments. Sorry, not trying to jack your thread.
 
I know :) And yes, there were a lot of perfectly healthy looking 20-30 year old young men in the doctor's office the day I was signing up for my MMJ card (they do a "clinic" once every 3 months here) who were claiming migraines and back pains and all sorts of things. Were they all faking? Probably not, but I'm sure a few were. Nobody seems to care much here which is nice.

The Holden's Hope stuff comes from the enlightened state of Colorado.
Hawaii is moving in the right direction. They have moved the regulation of MMJ from the drug enforcement side of government to being under the watch of the Department of Health. I think that reflects a positive shift in attitude.
Also, we are going to be having dispensaries in 2016, not on my little island for a while longer of course but I can take a ferry ride to Lahaina on Maui to "go shopping".

And You're not jacking the thread. I totally agree that concentrates are iffy as far as what is really in them. That is probably why some seemed to work for me and others didn't. In addition to the high heat and chemical solvents to do the extraction plus who knows what for "inactive ingredients" like glycerin and alcohol and sweeteners. Blech.

I slept for ten hours last night. I feel awesome. I've got another two weeks until I can shave another pill off my dose on the official schedule but I really want to do it now.
 
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