My Personal N=1

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Blonde Angel said:
I'm so pleased to read that stuff seems to be going great for you and you are proactive and taking the responsibility to self advocate.
One thing I'm in awe with you AB is that you are on your own and you are very self sufficient and resilient person. :)
Please keep us informed.
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Will do. Thanks for the kind words but I don't know any other way to be. I hope my experimentation can bring some info to light that might help others.

Blonde Angel said:
There is something just so massively back-ass-wards about taking meds for seizures not because the meds really stop the seizures but because stopping the meds would cause seizures. What is wrong with this picture?
:soap:

This is exactly what My Hubs originally thought was quite paradoxical when we went through some really negatives issues with some of those meds. He was quite instrumental in getting me to think broadly about interactions and side effects.
Its quite scary reading those leaflets info that comes with the meds.
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Oh, yes. "Here, take this medication because it may help to reduce your seizure symptoms. It may also give you cancer, screw up your endocrine system, cause nutrient deficiencies, and cause you to think about killing yourself, but, hey, we have pills for all that stuff too!"
 
I'm not a fan of anti-seizure medications, but it's not quite fair to say that they don't really stop the seizures. For many of us they do. Yes, stopping them suddenly can cause seizures, but that's because doing so is chemically traumatic to the brain, just as suddenly quitting our daily dose of nicotine or heroin or caffeine (or even marijuana) can be. Suddenly ripping off a bandaid can cause an injury to start bleeding again, but it doesn't mean that bandaids cause bleeding.

I know that AEDs are very blunt instruments, but I when I'm not on them, I have seizures. My seizures aren't caused by stopping taking the meds. Off meds, my brain can't do it on its own. I hate that our medication choices are so limited, and I'm thrilled to read about you guys having success with alternatives (and being brave enough to do so in the first place). Maybe one day I will too. But right now, Lamictal does the job for me, and does it well, so I can't dismiss it altogether.
 
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I understand that everyone's journey is different, and I'm pretty sure that the majority of us on this website can agree. Every person's reaction to meds is different. Personally, after 16+ years of poisoning my body with chemicals and constantly dealing with horrible side effects in one way or another, I'm still on the fence. I do take my meds, every day like clockwork. Every 8 am and 8 pm my iPhone alerts me " time to put your kidneys and liver into overdrive"! Now, take into consideration. I have been having more nocturnal seizures, but, the severity of them does not seem to be as extreme. To my knowledge, I have not done any sleepwalking in almost 6 months. On meds, I am having "waking" seizures now too, or whatever they are, weird. So, my rambling probably doesn't help anyone, but I think I had a point somewhere in there.... Medical marijuana seems to be the best for me. Maybe that's why I can't remember my point!
 
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Nakamova said:
I'm not a fan of anti-seizure medications, but it's not quite fair to say that they don't really stop the seizures. For many of us they do. Yes, stopping them suddenly can cause seizures, but that's because doing so is chemically traumatic to the brain, just as suddenly quitting our daily dose of nicotine or heroin or caffeine (or even marijuana) can be. Suddenly ripping off a bandaid can cause an injury to start bleeding again, but it doesn't mean that bandaids cause bleeding.

I know that AEDs are very blunt instruments, but I when I'm not on them, I have seizures. My seizures aren't caused by stopping taking the meds. Off meds, my brain can't do it on its own. I hate that our medication choices are so limited, and I'm thrilled to read about you guys having success with alternatives (and being brave enough to do so in the first place). Maybe one day I will too. But right now, Lamictal does the job for me, and does it well, so I can't dismiss it altogether.
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I realize that this is the case for many people. My question is though, and I don't think anyone can really answer this with any certainty, just how many people are there out there who had seizures for one reason of another, then were medicated and have taken the meds faithfully for years but don't really need them anymore? But if they stop the meds they do have withdrawal seizures so they *think* the meds are essential.

Obviously I'm not talking about anyone with a brain tumor or injury to the brain.

And I'm not talking about chucking the pill bottles and running. I'm talking about a careful, medically supervised step down off of meds. The thing is, how many people never even *try* or it never even occurs to them to try? That is the sad part.

And the pills do work for me too. If all I wanted was a nice safe predictable way to not have seizures, that would be fine. But they stop my seizures while also giving me osteoporosis, possibly giving me cancer (the parabens), and making me put on weight which then leads to all kinds of other health problems down the line.

That's not good enough for me. I won't accept that tradeoff. It's not about bravery, it's about self preservation.

Then there are a lot of people for whom the drugs don't work well at all and they are having horrendous side effects but they are still too scared to even *consider* going for an alternate method of seizure control.

It's as if so many people have been brainwashed into believing that the only source of wisdom is a white coated MD and the only source of healing is a bottle of pills.

People are willing to put their central nervous systems under a scalpel and have non-removable metal devices (which may or may not even work and may even make things worse) installed in their bodies because they are desperate and have "tried everything". Well if "everything" includes giving dietary and herbal interventions a serious sustained try then I say god bless them. But if they are willing to submit to surgery without even giving a thought to what fuel they put in their bodies then all I can do is shake my head and wonder. Every person makes his or her own decisions, but I just don't understand that one.
 
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gbpackerfan said:
I understand that everyone's journey is different, and I'm pretty sure that the majority of us on this website can agree. Every person's reaction to meds is different. Personally, after 16+ years of poisoning my body with chemicals and constantly dealing with horrible side effects in one way or another, I'm still on the fence. I do take my meds, every day like clockwork. Every 8 am and 8 pm my iPhone alerts me " time to put your kidneys and liver into overdrive"! Now, take into consideration. I have been having more nocturnal seizures, but, the severity of them does not seem to be as extreme. To my knowledge, I have not done any sleepwalking in almost 6 months. On meds, I am having "waking" seizures now too, or whatever they are, weird. So, my rambling probably doesn't help anyone, but I think I had a point somewhere in there.... Medical marijuana seems to be the best for me. Maybe that's why I can't remember my point!
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Pass the doobie, Dude. I understood your point just fine. :)
 
To take Nak's Bandaid analogy a step further......

What if the Bandaid was really needed at the time but then healing has taken place under it and everything is fine except that the person is too scared to peel back a corner and find out?
So they keep applying layer after layer of Bandaids to their skin until the Bandaids themselves start causing problems like blocking their production of Vitamin D and making damp spots that get infected with mold and bacteria and skin irritations from the glue that then turn into new sores. Not to mention walking around with a huge lump of Bandaids on your body and the cost of continuing to buy more Bandaids.

But instead of taking off the Bandaids, the docs want to give you antibiotic pills, pain pills, and an anti-fungal cream along with some Zoloft so you will have a better self image despite having an "Elephant Man" sized lump of Bandaids on your head.

Why do we put up with this?
 
AlohaBird said:
To take Nak's Bandaid analogy a step further......

What if the Bandaid was really needed at the time but then healing has taken place under it and everything is fine except that the person is too scared to peel back a corner and find out?
So they keep applying layer after layer of Bandaids to their skin until the Bandaids themselves start causing problems like blocking their production of Vitamin D and making damp spots that get infected with mold and bacteria and skin irritations from the glue that then turn into new sores. Not to mention walking around with a huge lump of Bandaids on your body and the cost of continuing to buy more Bandaids.

But instead of taking off the Bandaids, the docs want to give you antibiotic pills, pain pills, and an anti-fungal cream along with some Zoloft so you will have a better self image despite having an "Elephant Man" sized lump of Bandaids on your head.

Why do we put up with this?
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I suppose it's about fear that some people think they "can't" or is it they "won't" because the Doctor always knows what's best.
Some just can't be bothered because they believe their particular unhealthy vices benefits their quality of life. What pees me is they would be the first to blame everything else but their unhealthy choices do work that out?

My own parents think that the Drs are mostly right and don't like to question and challenge for fear of insult.
So I do think at times with the older generations they can be less resistant to offend.
I do think as time goes on, in more generations to come .... People will learn to challenge more.
There is renewed interest in natural products for the prevention and treatment of various diseases and some get peed off with the side effects of various meds and often limited benefits from some pharmaceutical drugs.

For me, it's not about self preservation but looking for healthy alternatives but also being aware of safety issues for my child. I am scared of the side effects TBH of the long term stuff of meds.
So, I'm being proactive for someone else.

There is no average person.
Drug companies do contol studies and publications
When a Dr graduates from medical school they do get plonked on their desk glossy brochures promoting the latest from drug companies.

However, alternative medicine also has its negatives and there's people who do take advantage if those looking are desperate and gullible.

It's about looking carefully and be open minded to try.
I'd rather try than not try and have regrets in not trying to help my child.
 
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What if the Bandaid was really needed at the time but then healing has taken place under it and everything is fine except that the person is too scared to peel back a corner and find out?
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Yes, this is an intriguing question. In my own experience, I've tried twice to "peel back a corner" -- very slowly, and with doctor's supervision -- but the result has been seizures both times. But give me a few years, I may try again. :)
 
I have made a few tries at peeling back the Bandaid over the years. This time is really feeling different than all the others.

Things I have learned by past attempts:

1)Go SUPA slow. Give the bod ample time to adjust fully at each stage before pushing on. It's easy to get impatient. The bod needs time to clean out the gunk even if you think you are feeling fine.

2)Find out how your meds (if you have more the an one) interact with each other. My VpA and Pheno are a bad combo because the VpA potentiates the Pheno (makes it stronger). One failed attempt was reducing both drugs at the same time. One was starting with the Pheno. This time I am going for getting the VpA out first since it has a shorter half-life. This untangles the drug interaction issue. Now, if I want to work on the Pheno, it is just the Pheno and not the "drug stew".

3)Get yourself "in a good place" as far as overall health goes. Getting enough sleep, minimizing stress, generally healthy food and lifestyle habits.

4)Find a neurologist you trust and one who realizes that your priorities are the ones that matter.

5)Give cannabis a try in one form or another. It feels to me like it is a gentle "adhesive remover" to stretch the Bandaid analogy even further.
 
Oh and did I mention that I have lost seven pounds since being fully off the VpA? (since Jan1). Nothing different about my eating habits. Still basic low carb paleo. And no increase in exercise. The seven pounds (so far) have "fallen off" without me even trying. Happy banana dance!

:banana::banana::banana::banana::banana::banana:
 
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Thank, Nak!


To "deeds" and anyone else reading who has tried the Holden's Hope paste or similar products: Anybody got any feedback to offer about it?

There is a nice guy named Gene (posting as Hope4all) on the forum who is looking for medication alternatives and options for his newly diagnosed niece. He is interested in hearing from anyone who has tried the HH paste.
 
Thank you AB for the post requesting feedback. I also posted on another related thread requesting info from anyone using HH.

I believe the reason most of us are here is that we are looking for alternatives. For us(family)it is an alternative to surgery. After being on meds for approx. 6.5 years with all of its terrible side effects and not much change in the frequency of her(niece) seizures, the doctor recommended surgery. We did consider it but at about the same time, NY approved the use of MMJ, and we decided we would give it a try.

After reading numerous posts, there are members who are not willing to try. In our particular case, we're leaning towards the HH, before going through the dispensaries.Can a product that doesn't require FDA approval(obviously not a drug) and is marketed as dietary supplement be that bad? We don't think so especially when the alternative is surgery.

Thank you all for all the valuable input. Hopefully we can all find our ALTERNATIVE.

Gene
 
Hi Gene,

IMO you and your family have got your priorities straight. The MDs are offering you pills that don't do much good and then offer you the "alternative" of invasive major surgery.

It's great that you are looking for an alternative to that alternative.


So this coming Monday, being the first of February, I will be starting on the next phase of my drug withdrawal project, getting rid of the Phenobarbitol. I have been taking this stuff forever and it is a serious central nervous system depressant. I have felt good before when trying to attack the issue from the angle of reducing the Pheno, like a had more energy and needed less sleep so I am looking foreword to Phase 2.

Now that I have the VpA out of my system, I can just work on the Pheno without the effects of the two getting tangled up.

I'm thinking about doing it one half pill at a time (I currently take four 65mg tablets per night). It has a really long half life so I want to be sure to give it ample time to clear out and give my body time to adjust at each step of the titration.

Crossed fingers and toes and any and all prayers to the deity of your choice would be appreciated. :)
 
Hi AB,

That is such great news that you have been successfully weening off your meds. This is something which we will also work on and I'll explain our reason.

We just realized that when my niece began having episodes in 2009, she was put on Keppra and Lamictal and the frequency of her seizures at that time were 1 every 4-6 weeks. Now 6.5-7 yrs later, she is on an additional 2 meds for a total of 4 and the frequency of her episodes have not changed. Were these additional meds necessary, we don't think so, and yes we will bring it to the attention of her epileptologist. All the more reason to look for alternatives.

Was wondering if some members here who live in states where MMJ has been approved for a while now(eg. California,Colorado), can fill us in on how they are treating their seizures. Are they trying CBD enhanced products which are available on-line, or are they treating their seizures with CBD enhanced MMJ available from the dispensaries? Also, what type of results are you getting? This would be great info to have. Please chime in any and all members who may answer these questions so that we may be better informed in our pursuit of alternate courses of action.

AB I want to thank you again for all of your input.

PS: will be ordering the HH today.

Gene
 
Great!

Four meds and no real change in seizures. Ack! That seems like the definition of insanity, continuing to try the same thing and expecting different results.

I have a medical MJ card in both Hawaii and California (I just moved here from San Diego about 1.5 years ago).

Hawaii is going to be getting dispensaries this year supposedly but they are still working out the logistics. At this point it is a "grow your own" state. I have been having some mixed success with gardening. I'm not really good with plants. But I have come up with some nice buds. I started with some seeds given to me by a doctor, the one who signs the authorization forms to get MMJ cards. He said they were from a friend in Israel who is working on a big MMJ study there and said that they were comparable in TCH/CBD content to Charlotte's Web. I'm cooking them the same way the Holden's Hope people do.

This would be the most economical way to do it if you can locate any of that type of MJ strain.

The California dispensaries are awesome. I was on a trip to see my Mom over the holidays and "stocked up" on a lot of dispensary goodies such as cannabis infused chocolate bars, honey, mints, etc. Nobody said anything about transporting them back to Hawaii. I even got one of those little TSA notes in my suitcase notifying me that mine had been the random search of the day winner but they left my "stash" alone.
 
Hi Aloha Bird, VpA was NOT good. Side effects of big weight gain and hair loss. When I was taken off of that for Tegretol /Diamox the weight just came off. I am presently switching from tegretol/frisium to tegretol/lamotrigine. It's scary when you find out frium-clobazam is a benzodiazepine that is addictive 17 years after starting. My primary preference would be MMJ. Unfortunately, it is difficult to find a neurologist of similar mind. Sorry for entering but wanted to communicate. Keep the great posts coming.
To Gene - when a doctor suggests more than 2 meds it is a good time to question the ones that are not working. Take care of your niece. She is lucky to have you.
 
Don't be sorry, Alberta. The more the merrier. Welcome.

I haven't had any hair loss that I've noticed but during the time I've been on VpA I also went through chemo for breast cancer so my hair has been completely gone and back again.

Your advice to Gene is sound that many problems start when you start mixing multiple meds and the meds getting intertwined makes any attempt to get off of them exponentially more difficult.

Not sure where you are (Alberta in Canada or is that your name?). Both in California and Hawaii, there are doctors who specialize in just writing official scrips for MMJ. It doesn't have to be your actual neurologist if s/he is being closed minded.
 
Unfortunately, I am in Canada. Because I am in the process of switching meds, with a neurologist who says it is illegal to prescribe MMJ for seizures, the best move for me right now seems to be getting rid of the clobazam. My next hope is to stop the tegretol if the lamotrigine has few side effects. Anyone who hears of test subjects needed for MMR in Canada feel free to let me know. :)
 
In my experience Tegretol was worse than having seizures. Sounds like you need a little mid winter ski vacation to Colorado. :)
 
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