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Showing posts with label multip!e sclerosis. Show all posts
Showing posts with label multip!e sclerosis. Show all posts

Wednesday, April 6, 2022

Sleep and MS, or Sleep awake Cycle, sleep deprivation



 A Topic, I have not blogged much on, is the sleep cycle. There is a known item called Sleep deprivation also.

I have experienced this since before being diagnosed with Multiple Sclerosis. But this is part of Multiple Sclerosis, and a bunch of other disorders.


This According to Wikipedia, 

"Sleep is a naturally recurring state of mind and body, characterized by altered consciousness, relatively inhibited sensory activity, reduced muscle activity and inhibition of nearly all voluntary muscles during rapid eye movement (REM) sleep,[1] and reduced interactions with surroundings.[2] It is distinguished from wakefulness by a decreased ability to react to stimuli, but more reactive than a coma or disorders of consciousness, with sleep displaying different, active brain patterns.

A sleeping girl
Sleep is associated with a state of muscle relaxation and reduced perception of environmental stimuli.

Sleep occurs in repeating periods, in which the body alternates between two distinct modes: REM sleep and non-REM sleep. Although REM stands for "rapid eye movement", this mode of sleep has many other aspects, including virtual paralysis of the body. A well-known feature of sleep is the dream, an experience typically recounted in narrative form, which resembles waking life while in progress, but which usually can later be distinguished as fantasy. During sleep, most of the body's systems are in an anabolic state, helping to restore the immunenervousskeletal, and muscular systems;[3] these are vital processes that maintain mood, memory, and cognitive function, and play a large role in the function of the endocrine and immune systems.[4] The internal circadian clock promotes sleep daily at night. The diverse purposes and mechanisms of sleep are the subject of substantial ongoing research.[5] Sleep is a highly conserved behavior across animal evolution.[6]"


I can only tell you of my experience of sleep with being diagnosed with multiple sclerosis.  I am not a Doctor, but rely on them with many questions.

Most over the counter items have been tried. Check with your Doctor, before doing this, as some may interact with medicines.

Many multiple sclerosis medicines will can make you sleepy.  But being able to sleep at the right time is a necessary evil that can transform into sleep deprivation.

I even tried items to help you sleep. Many are availiable by Google search, or youtube.com  binerial  beats at different frequencies was interesting. The sleep talk, to make you feel sleepy, or the pitter patter of rain drops, to the ocean, or a campfire sometimes helps.  Making sure your room is for sleep.

"Sleep timing depends greatly on hormonal signals from the circadian clock, or Process C, a complex neurochemical system which uses signals from an organism's environment to recreate an internal day–night rhythm. Process C counteracts the homeostatic drive for sleep during the day (in diurnal animals) and augments it at night.[27][23] The suprachiasmatic nucleus (SCN), a brain area directly above the optic chiasm, is presently considered the most important nexus for this process; however, secondary clock systems have been found throughout the body."

My circadian clock was real messed up.

But when all these fail, your Doctor may prescribe medicines. Drug companies may have you do what they call "Step Therapy".  This is usually a process to make you fail, using inferior medications, perhaps a copy of the real medicine, or combinations.

After using a dozen, perhaps more, that included lunesta, and many other  generic sleep meds. at least thirteen other companies make this. All they need is 75% of the active ingredient for a generic medication. I was switched to many sub standard companies, before I requested name brand Ambie, then went to Ambien ER in 2013.

This has happened with other meds that went to generic versions.  Some had detrimental effects on me, that I need the name brand.

Recently, the worlds largest pharmaceutical company bought out contracts from other boxed stores, making them the only player for the consumer to buy from. They Stopped carrying Ambien, with a phone call from their customer service Center, asking me, what I wanted to switch to. I asked if she was a dr, and she said no. I told her I was not a Dr either, so she would have to contact my Dr.

The largest company, Express Scripts, was just bought out by Cigna.

Then it started all over, of "Step Therapy Medications". Three were mentioned. I had already tried. Meds to treat my Multiple Sclerosis were stronger than the Three, per ingredients, and some would interfere with my regimen of meds. I quoted some legal items of Step Therapy to my Dr. For help of obtaining something better.

I gave her two new sleep medicines, and a third coming out, that might replace, or be as strong as Ambien, and the research sites of how they work.

DAYVIGO was chosen, and needed prior authorization, medical exemptions, which were quickly denied.  More paperwork for all the above.  This is where a insurance becomes a Dr without a license.  A review committee, and finally a approval for my Doctor.

5 mg was not strong enough a week later, so my Dr requested 10 mg.

This works differently than ambien. But will have to let you know. I keep a sleep tracker on my watch, a inspire. It gives me scores of sleep, deep, light, Rem, and much more information I  can show my Doctor. Example below.


Much more information is availiable. Many watches and apps were tried, before this was purchased, which show sleep. 


Quviviq-new-sleeping-pill is the newest sleep aid being tried, June 2022. Clicking on this will give you more info than I can, and I will have to do a update on each of these pills.

DAYVIGO gave me vivid dreams, but the maximum dose still did not get me the Quality of sleep I need.

I have been to three sleep studies, two overnight at UC Davis. Many electrodes placed on your head and body. its like being cloned, as they measure all these elements.  I do not have sleep apnea, a condition of snoring. A Cpap machine helps many.

I think I am a test subject, due to my primary progressive Multiple Sclerosis, and hereditary Hemochromatosis caused by two rare DNA H63D genes, that caused Iron Overload.

my regimen consist of over twenty Nine medications, counted out for daily use. Each designed for the multitude of MS symptoms, and therapies that have been added on... including Botox  into my calves, thighs, neck and shoulder muscles. Many of the meds make me sleepy, so to combat that Prohibit is used during the day, to give me a few hours for the quality of life.

Thanks for reading.

Email me with questions anytime.

JoeY

Friday, October 5, 2018

Quinine Toxic or helpful?





What is JoeY talking about now, you will ask.--------------------------------------------

Quinine is still added to Tonic Water. This is what you can use to make Gin and Tonic, or drink it alone. The USA banned quinine in all the other medicines that were available made with this, except Tonic Water, and limits how much they can use.

Quinine is made from the cinchona bark. As you might know, cinchona bark consists of quinine, which is toxic.
 
Quinine is a unique substance. It comes from the bark of the cinchona bark.
  It has a legal limit of 83 ppm in carbonated drinks, Tonic water, the only one.   Besides the use in Gin and Tonic, it was used medically for cramps before being banned in the USA.


"take one of the most popular tonic syrup recipes, published by Jeffrey Morgenthaler: 
Basically, it's 6 cups of liquid to 1/4 cup of powdered cinchona bark, which is about 35 grams of cinchona. Extrapolate from that and we're talking about 35 grams of cinchona per 1.4 liters of end syrup, which is 25 grams per liter, and if it extracts fully, contributes 1.25 grams of quinine per liter, which equates to 1251 parts per million. That's 15 times the CFR standard.
If you use 3/4 of an ounce of that syrup in a Gin and Tonic, you're adding in 27.5 mg of quinine - more than double the amount of quinine in a commercial gin and tonic. 
Note: Does a syrup extract quinine fully from the cinchona? No - but it extracts faster from powdered cinchona versus cinchona chips or quills.
Note: Does a syrup that is sieved through a french press or a coffee filter have a high percentage of solids still in suspension? Yes - and any of the solids you swallow contribute the full amount of the quinine as your body digests the powder. "

You must also hear The researchers notes read from test done by scientist. This may be enough to make sure to talk to Doctors before use. 


The Baclofen I am on was maxed out on the limit that I could use.  Diazepam in low dose was tried.

The spasms, Charlie horse and muscles in my calves not letting up.  Botox was being used every three months, Injected into certain spots of the muscles, by a Neurologist. This would last 60 days.
Research was done when Neurologist mentioned Quinine may help. A EKG was done of my heart.

A regular quart bottle was taken of  Tonic water which contained Quinine.  Nothing,  but it has A lot of sugar, and the sugarless has a sugar substitute, what I thought had been banned twenty years ago.

But not enough Quinine, and to much sugar.

My research led me to Quinine. The Dangers of Quinine, and how to make your own.
I found some suppliers, buying a pound of Quinine bark, and following a recipie by Jeffrey Morgan


https://www.jeffreymorgenthaler.com/how-to-make-your-own-tonic-water/

Their are different types of bark, and more research. This site has a lot of information.

This would amount to taking a shot glass, or a ounce of homemade quinine, which is about 27 mg quinine. 
Drinking this elixir would immediately stop my curling toes, and the bottom of the feet to the calves. I did not use any gin, and lowered The sugar content, as the Tonic quinine is what I wanted.

The recipe, and math was gone over with my Neurologist, and Heart Dr, so I would not build up to much quinine in my body. 

30 grams per ounce is what I try to obtain. Not more than a shot in a day, and only when really needed. 

Regular checks with the heart Dr, doing EKG, Echos,  GP, and Neurologist is a must! Listen to video.

  I could say this is a wonder bark from the tree, but you need to listen to the researchers notes to know why this was pulled from the market.  You need  your GP, Neurologist, Heart Dr, and all involved in your team to know before making it, or use of this substance. I am not promoting its use, or making this, just my research, and what worked for me might not work for someone else.

I am not saying, go make your own quinine.  But try a bottle of Tonic Water. It might be all you need.

Or better yet, a Tablespoon of yellow Mustard, has wonderful properties, scientist can not explain how Mustard will bypass digestion system, and calm muscle spasms. This was A mention from my Neurologist to try years later. Mustard. A plain yellow mustard works.

Thanks for reading
JoeY