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#1 nancy1640

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Posted 16 April 2008 - 03:31 PM

Has anyone had any success with homeopathic remedies? I am currently on provigil (which was finally approved by my insurance) but the side effects are bothersome so I only take a half dose at a time. My understanding of narcolepsy is that the hypocretin levels in the brain are greatly reduced and I'm wondering if there is something natural or homeopathic to help restore those levels. I do not have cataplexy but have the excessive daytime sleepiness and occasional sleep paralysis with nightmares.

#2 Ashley

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Posted 16 April 2008 - 04:51 PM

Yes, I got on a homeopathic kick not too long ago. I was taking Valerian Root and Melatonin at night. During the day I took ginseng and a natural caffine along with adderall. It didn't seem to help at all.

Have you had any success with anything?

#3 nancy1640

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Posted 16 April 2008 - 05:48 PM

[quote name='Ashley' date='Apr 16 2008, 09:51 PM' post='2895']
Yes, I got on a homeopathic kick not too long ago. I was taking Valerian Root and Melatonin at night. During the day I took ginseng and a natural caffine along with adderall. It didn't seem to help at all.

Have you had any success with anything?
[/quot

No, I haven't but I am seeing a homeopathic practitioner and so far no success. I hoped if others had some success, I could give this info to him. Thanks for the response.

#4 Cryopathic

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Posted 16 April 2008 - 07:29 PM

I wonder if there is a way to extract Hypocretins from someone else (like a donor) And inject it into someone else who has Narcolepsy.
If someone found a way to do this they would be one rich person. tongue.gif

#5 Henry G

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Posted 08 August 2008 - 02:54 PM

they've done it and works on mice and dogs.

but sniffing the substance works on sleepy monkeys.

basically there seems to be a cure already, but they aren't going to release it unless they patent it first.

the cure is micro-amounts of hypocretin diluted in water and made into a nasal spray.

#6 greatbig47

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Posted 08 August 2008 - 03:01 PM

The problem (as it was explained to me) was finding a way to safely pass the blood/brain barrier. This is the membrane between your brain-goo and the blood in your head.

#7 Henry G

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Posted 09 August 2008 - 02:30 AM

QUOTE (greatbig47 @ Aug 8 2008, 08:01 PM) <{POST_SNAPBACK}>
The problem (as it was explained to me) was finding a way to safely pass the blood/brain barrier. This is the membrane between your brain-goo and the blood in your head.



Perhaps the reasons they are holding back are more:

* Orexin-A is unstable at room temperature or when diluted in water.

* The amount delivered has to be extremely precise.

Anyway here is the link if anyone is interested: http://www.wired.com...eep_deprivation

If I was a millionaire I would have no qualms in importing the raw material and recreating the experiment on myself.
It's a naturally ocurring peptide , it can't be that toxic - 50 micrograms per litre is almost nothing.
And no way near as toxic as a lot of the medicine people with N have to take.

#8 greatbig47

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Posted 09 August 2008 - 04:33 AM

QUOTE (Henry G @ Aug 9 2008, 03:30 AM) <{POST_SNAPBACK}>
Perhaps the reasons they are holding back are more:

* Orexin-A is unstable at room temperature or when diluted in water.

* The amount delivered has to be extremely precise.

Anyway here is the link if anyone is interested: http://www.wired.com...eep_deprivation

If I was a millionaire I would have no qualms in importing the raw material and recreating the experiment on myself.
It's a naturally ocurring peptide , it can't be that toxic - 50 micrograms per litre is almost nothing.
And no way near as toxic as a lot of the medicine people with N have to take.


GREAT link Henry! Hope all is well with you!
(Henry is an awesome guy - - - And I really should upgrade him to a FOTWA Status)

UPDATE: HE'S BEEN UPGRADED!

Maybe we should start an email campaign to push this kind of research and development. I think we should ask some serious questions about this at the conference!

-Stu

#9 Marcianna

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Posted 09 August 2008 - 10:06 AM

QUOTE (Henry G @ Aug 9 2008, 07:30 AM) <{POST_SNAPBACK}>


I um...Self medicated..... for years before I even found out I had Narcolepsy. I was actually about six months clean when I was diagnosed. But I kind of have a huge problem with putting anything up my nose ever now. I wont even do it with the migraine medicine. I insist on pills. It just freaks me out to much.
I wonder if the will find away to take it any other way? It seems like something that could be a huge break through.

I dont take my meds now and am a huge fan of never taking them.... but as I get older I get worse. There may come a time when I will have to reconsider my drug free choices. That kind of sucks but at least I am not kidding myself. lol.

#10 RipVanWinkle

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Posted 10 August 2008 - 11:38 AM

I got totally ripped off by a homoeopathic doctor years ago, he sold me all this crap and it didn't do a thing.
After a year of this I'd had it and was told by him that I had mental problems.
Yeah maybe that was caused by the severe distress of giving all my money to him.
I did find that St John's Wort did something, as did Siberian Ginseng.
I wouldn't say that for the cost either were worth bothering with.
I think fish oil does help, especially the really pure stuff in big doses, too expensive though.
As far as experimenting goes I've tried a lot of different things to ease the symptoms.
Some legal, some not, and some worked but I couldn't say what long term use would do.

#11 Henry G

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Posted 11 August 2008 - 05:22 AM

Hi please forgive my pedantism:

But Homeopathy refers to the alternative therapy of prescribing (mostly) pure water.

Herbal Medicine refers to prescribing herbs, plants and so on - unprocessed or very near it's raw form (ie maybe extracted in alcohool, or made into powder, or tea)

Homeopathy is very different from Herbal Medicine (ie St John's Wort and so on)

In Homeopathy they prescribe you say a poison: Arsenic.
But that Arsenic is dissolved and diluted so many times that you can't even find one single molecule in the water dispensed any more.

Most scientists believe Homeopathy is pure placebo.
Some believe Homeopathy does work, but because science can't still explain it - doesn't mean it's rubbish.
Some tried to prove theories like the Memory of Water or the Aura of the Molecule (etc)

One of the areas of Homeopathy I found particularly effective (whether it's placebo or not) is
Bach's Flower.

Homeopathy itself never cured my narcolepsy, but it has my chronic Asthma (and that of my sister and that of an ex-girlfriend) .. so I am open-minded that the therapy may work on more psychosomatic diseases. My asthma would trigger under stress or fear rather than allergens alone.

Narcolepsy is a physical condition: an area of the brain is dead. So Homeopathy can't cure it - no way.

Herbal Medicine I found usefull for myself:

St John's Wort - take daily for at least 3 months
Damiana - works on the adrenals, gives me energy without the speed edge
Cardamon Extract - my body feels cold a lot and that extract is pretty spicy and fires me up
Ginkgo Biloba - not much but just a bit can stimulate the mind and improve memory
Panax Ginseng - against fatigue

A typical generally anti-Narcolepsy helping mixture (might be) => St John's Wort, Damiana, Gingko Biloba, Panax Ginseng and Valerian.

... Today not a good day for me. I want to write and add links better but EDS is pretty strong.

But in short (and back to Bach Flowers) - there is an original book by Dr. Edward Bach.
The advantage of Bach Flowers is that it is advisable for you to self-prescribe, experiment yourself as it is completely safe.
Homeopathy is nothing but pure water.
So if you prescribe yourself the wrong thing - it doesn't do you harm, but simply doesn't work.

--

Hi Stu, found your NN forum the other day and had heaps of energy thought about participating more. Nice to see so many folks (bro's and sisters around)

Going to sleep everyone .. apologies if my thoughts today are not sharp and clear.

hugs

Henry

#12 Henry G

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Posted 15 August 2008 - 10:50 AM

QUOTE (Marcianna @ Aug 9 2008, 03:06 PM) <{POST_SNAPBACK}>
I um...Self medicated..... for years before I even found out I had Narcolepsy. I was actually about six months clean when I was diagnosed. But I kind of have a huge problem with putting anything up my nose ever now. I wont even do it with the migraine medicine. I insist on pills. It just freaks me out to much.
I wonder if the will find away to take it any other way? It seems like something that could be a huge break through.

I dont take my meds now and am a huge fan of never taking them.... but as I get older I get worse. There may come a time when I will have to reconsider my drug free choices. That kind of sucks but at least I am not kidding myself. lol.


Hi Marcianna

It would be a good idea if they could develop a Chewing Gum that delivers the Orexin peptide.

Chewing in itself tricks the body and mind to become a bit more alert anyway.
Your concentration improves even if only marginally.
Some racing drivers chew gum to concentrate better.

Now they would never ever bother about this unless we nudge them to consider.
I am a cynical of pharmaceuticals .. I've watched too many films showing how evil evil they are - so some brainwashing here .. and I've watched a number of documentary also stressing the fact.

But if we are going to get anywhere - we have to speak their language : which is money.
Not "think of how many lives you can improve" but "think of the Money $!"

Imagine: a truly effective pick-me-up Chewing Gum dotted with Orexin.
The massive bulk of order will *not* be from Narcolepsy patients, but normal people: shift workers, students, workaholics, actors, DJs .. <add people with an excuse: here>

Take Provigil; a truly expensive drug and not quite really a narcoleptic life-saver. Anyone Narcoleptic who are on on-going prescription of Provigil knows - it's a sub-par medicine;

The main customers are Provigil again are non narcoleptics: the military, shift-workers and possibly even junkies. (I am going to research more into this - if there is such a thing as Provigil-abuse)


QUOTE
I dont take my meds now and am a huge fan of never taking them.... but as I get older I get worse.


I was like that - in fact I was proud of the fact , I hated medicine. But found myself abusing other things instead: 5 cans of Redbull per day, Caffeine Pills, herbal stimulants, legal "highs".

I know of a Narcoleptic lady in Brazil that just takes 1 Ritalin pill and just that - and it makes her function throughout the day. She has a regular 9-5 job which I thought it would be an impossibility for a Narcoleptic. But she has it and also Cataplexy.

It could be that your body doesn't require that much. Or *alternatively* it may be your body is pretty resistant or tolerance building. Difficult to say

But from my own experience - Ritalin and Benzidrine are safe for Narcoleptics. Really. It feels no more toxic than drinking 2 very strong expressos per day. It feels no more toxic than drinking 2 redbulls per day. Or half-a-bottle of wine, some people do that - every night 1 botlle or more; Ritalin and/or Benzidrine are babies in comparison to damaging your central nervous system.

Here is what I found (my subjective experience of course)

Ritalin and/or Benzindrine are *not* addictive: either mentally or physically. They are medicines that causes "functional dependance" ie you can live your life without them, you won't cry or freak out, you won't feel pain headaches *but* you may find you can perform a bit better with their help. Sounds like "mental dependance" but it's not really because the medicine that is mentally-addictive you take it for taking sakes. With Ritalin or Benzindrine you take it when you need it (like an extra boost)

Ritalin and/or Benzidrine is zero or very low tolerance building if at all. You may find at first you are increasing your dosage, but that is your body trying to figure out what is the "plateau". Once you realize what is the average dosage you should take - you tend to stick with that. Moreover in my experience I find my body even punishes me if I go over the limit. Example if I take more than 2 Ritalins in one go - I feel very nauseous indeed. So my upper limit is 1.5. My upper limit for intake throughout the day seems to be 4 pills; it has been like that for 5-6 years. Whenever I have the opportunity to cut back; I do so.

You can also do what some doctors call "Detox Holidays" or "Detox Weekends" - you just simply stop taking the medicine for 48 hours to flush the toxins out of the system. But frankly I found that to be rubbish, I did once the experiement over 1 month without taking those medicines : 6 weeks without popping one single pill. And what did I find? Nothing. I didn't become any healthier or felt somewhat cleaner. It made no difference and the amount I began retaking did not decrease; just back as normal.

It is the other medicines that I believe may incur long term damage. I can't be sure about anti-depressants; I don't have long-term data as I start and stop, etc. But it is the sleeping pills I really fear are pretty nasty things.

If you can hang on there and not take any medicine that is ideal. But if you do find yourself in a situation in future, where you just "give-in". Do *not* feel guilty or afraid, my personal experience is that Ritalin / Benzidrine do not seem to be damaging. Your body might even thank you for an extra push.

The worse poison ever is Unhappiness and Stress - those are the most deadly toxins ever.

#13 Henry G

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Posted 15 August 2008 - 10:51 AM

QUOTE (greatbig47 @ Aug 9 2008, 09:33 AM) <{POST_SNAPBACK}>
Maybe we should start an email campaign to push this kind of research and development. I think we should ask some serious questions about this at the conference!

-Stu


Hi Stu

I think we should really press with this, that research seems the closest thing we got for a possible cure.

#14 Henry G

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Posted 15 August 2008 - 10:54 AM

QUOTE (RipVanWinkle @ Aug 10 2008, 04:38 PM) <{POST_SNAPBACK}>
I got totally ripped off by a homoeopathic doctor years ago, he sold me all this crap and it didn't do a thing.


Was he a Herbal Doctor or a Homeopathic Doctor?

Herbal Medicine and Homeopathy are completely separate things.