Re: alleviating the suffering during a crash

[Guest guest]

In a message dated 5/30/02 7:07:14 AM Mountain Daylight Time,

moores@... writes:

> I

> can only take so many more crashes.

Steve,

I don't want to be a wise aleck at your expense, but maybe it is possible to

stop the crashes.

I have mini crashes most weeks, but I bounce back in a day or so. Maybe it is

because I am in 3rd stage. Or maybe what 3rd stage really means is that I

have finally learned where the limits are. I eventually gave up trying to do

those things that I could not manage within the limits. Anything requiring

perseverance and follow thru. A big loss, but better than crashing while

trying.

I would suggest that if you are not already doing so that you consider b12

shots.

Its hard for me to explain it, but I feel like they are almost like a

tranquilizer, (no side effects) as well as all the other good things they do.

They might make you more peaceful.

Adrienne

[Guest guest]

wrote:

> There are many things that one can do to alleviate the suffering related to

> pain. But what about those suffer of fatigue, especially during a crash? I

> can only take so many more crashes. Is there anything one can do just to

> eliminate the suffer of fatigue? I know you have to try to move around a bit

> very day to keep your strength up. But what about the other 22 hours of the

> day?

The very best defense is a good offense: stop overdoing things and making

yourself crash! Remember Dr. Collinge's 50% rule: figure out how much you

think you can do today, and then do 50% and

STOP! This greatly increases the likelihood you'll be able to do 50% again

tomorrow, and the day after. Another word for this is " pacing " , and learning it

is one of the primary skills you need to

acquire to live successfully with CFS. (If you don't believe me, check Cheney's

writings!)

> Is there anything that helps? I do not care what kind of drug it is.

> When I fell like I am trapped under a ton of bricks I want relief.

As far as I know, there is no drug, no magic wand. There are things that will

give you temporary energy, but you pay in spades for it afterwards with an even

worse crash.

> That relief should not knock on out but being in a semi conscious stupor would

be

> ok by me. As long as I can force myself to move around a bit so I do not

> lose to much muscle mass.

Sleep, real honest-to-God sleep (not watching TV or doing other things while

" resting " , is the best medicine.

I use " rocking chair workouts " to keep circulation going when I'm too fatigued

to even walk around the house. A key piece of equipment for this is one of

those slanted, ergonomic footrests: put

the low side towards the rocking chair, and hang your heels off the end. This

increases the pumping action in your ankles, critical for avoiding edema. Put

on some music with a beat to keep you

going. After 20 minutes, you can add some easy exercises such as reaching

alternate arms overhead, doing shoulder shrugs and head rolls, straightening one

leg at a time and doing point-and-flex

and ankle rotations, etc. If your energy permits, you can add a few simple arm

exercises. Do just a few reps and then rest by just rocking in between, don't

try to force yourself to do any

specific number of them. 40-80 minutes of rocking is what I do, every morning

except when I have a migraine.

I also get a great deal of relief from doing the poses in Judith Lasater's book,

" Relax and Renew " . She calls it Restorative Yoga - it's basically a whole book

of yoga relaxation poses assisted by

props such as folded blankets, bolsters, pillows, and the occasional strap. She

very carefully describes how to safely get into and out of the poses. I find

them very refreshing, easy enough to

do when I'm crashed that I enjoy doing them.

Deep breathing exercises help.

Drinking lots of water and remembering to take your vitamins helps. Eating a

relatively unprocessed, low-carb, moderate to high protein diet helps many of

us. If you are crashing your adrenals,

try increasing your salt, and taking something like Thorne Products' Cortrex

(licorice root, adrenal extract, and adrenal cortical extract). Avoid caffeine.

I found that a combination of

identifying and avoiding my food allergy triggers, taking undenatured whey every

day, taking Armour Thyroid, and taking a whole raft of other things (CoQ10 etc)

on a steady basis helped reduce the

crashes.

But the biggest thing you can do is to get in the habit of asking yourself

frequently throughout the day, " have I done my 50% yet? " And if you even

suspect that the answer is " yes " , STOP AND

REST! In fact, plan rest breaks in between doing other things.

Hope this helps!

--

el (andrea@...) Nevada City, CA, USA

" ...wake now! Discover that you are the song

that the morning brings... "

" One is taught by experience to put a premium

on those few people who can appreciate you

for what you are. " - Gail Godwin

[Guest guest]

Hi Steve:

Major Crashes are the pits. For fun, I started to categorize them.

Major Crashes, Minor Crashes, Partial Relapses, etc. The major

crashes are the ones I never know when or if I will ever get out of.

I assume this is the type your describing. The just " let me die -

already " kind of crash. Yes? Well there is no easy answer to this.

It so individual.

I've also come to understand that my major crashes can be caused by a

variety of causes.

1. Overdoing

2. Liver Toxicity

3. Viral/Pathogen Growth Cycles

4. Just because it's Wednesday (Just kidding - Kind of)

So I guess only you would be the best judge of what you think is

going on. But in any case ... here are some tips.

Setting Limits: Those previous comments are good, and I concur. If

I feel I am pushing at all to do something ... I stop and lay down

for 20-30 minutes. However, sometimes there just doesn't seem to be

a reason as to why I crash. And when I have crashed, my limits are

set for me. (ie I ain't doing anything but hoping to get past this

one).

Re-check your meds and supplements: You may need to get with your

Doctor to review your meds and supplements and adjust them. The

majority of us CFIDS folks have some level of Liver Damage and I have

found my Major Crashes involve my Liver being unable to Detox

properly and it ends up re-posioning my system .... and crashing me.

For instance, MSM is a major detoxer, and can crash you. Chorella,

guifesen, etc. are detoxers and can overload Liver. Maybe cut

dosages in half - but check with your Doc.

Hydrogen Pyroxide/Epson Salt Baths: Helps to remove toxins through

the skin.

Infrared Sauna: Again ... helps to remove toxins through the skin.

Ultraviolet Light Therapy (hemostatic): They take blood out - run

through UV Light and Put it back into your body. It's been pretty

amazing - but occasionally this too will crash me.

Myers IV - Has lots of Vitamins/Minerals that we need. (B12, B-

Complex, C, Magnesium, etc.)

Vit. B12 Shots (Hydroxycobolomin) ... a must for any us.

Magnesium ... ditto

Most of all with any crash .... have a soft comforter! (laugh)

Strange how cozy bedding has become a priority in my life.

Colonics: If you can manage to get there ... Colonics can help to

pull out the toxins quicker. That is assuming that the crash is due

to a toxic liver. Enemas are another way - but if your in a crash -

these tips must sound overwheming.

Stay Quiet and out of Bright Light. PWC often have damages the Sub-

Cortex portion of the Brain, particularly the Hypothymus. So during

a crash .... everything is amplified due to this brain damage.

That's why we tend to isolate so much. In any case --- the more

stimulus ... the more neurotoxins are released. Sometimes the only

way out of a crash is to shut down external stimulus. Sleep state

actually helps to remove the neurotoxins, whereas awake state is (ie.

neurons firing .... causes toxicity).

So for those of us with Sleep Problems, we get a double wammy ...

becuase sleeping acutally helps the body to revuvinate.

Lots of Water and Rest. Sounds trite ... but the main thing I try to

do during a crash is restabilze, and ride it out. In the mean time,

the water helps the kidneys to move out the toxins. But having to

get out of bed to go to the bathroom during a Major Crash seems like

alot to do. (laugh)

Supplements/RX's that I have found help me not to crash.

Cortisol: I take it 4 times a day. If you aren't on it already,

find a Doctor who will put you on some, cuz our adrenals are tweaked.

NAC - Precourser to Glutothione (needed for Liver) and helps protect

brain.

CoQ10 ... but you most likely have a cabinet full of supplements.

----

When you get out of your crash .... I would suggest getting Cheneys

Video tape on the Pathology of CFIDS. It really helps to explain

alot of what we are going through and how to work with this disease.

Hope this helps. Hang in there.

Love and Light

is

[Guest guest]

In a message dated 5/30/02 5:33:52 PM Mountain Daylight Time, andrea@...

writes:

> he very best defense is a good offense: stop overdoing things and making

> yourself crash! Remember Dr. Collinge's 50% rule: figure out how much you

> think you can do today, and then do 50% and

> STOP! This greatly increases the likelihood you'll be able to do 50%

again

> tomorrow, and the day after. Another word for this is " pacing " , and

learning

> it is one of the primary skills you need to

> acquire to live successfully with CFS

Totally agree with this. As they say, an ounce of prevention is worth a pound

of cure.

I have found it difficult in the past to obey this dictum, feeling

uncontrollable urges to just keep going, because, I think, it felt so good

not to be feeling like I was bound in iron straps or made out of stone, (or

maybe my nerves were hyped-up and firing more), but I finally have, after

long years full of continued deterioration- each big crash took me further

down-settled down, and it is nice to have a bit of stability. I am seeking

yet more.

Adrienne

[Guest guest]

>

> > There are many things that one can do to alleviate the suffering

related to

> > pain. But what about those suffer of fatigue, especially during a

crash? I

> > can only take so many more crashes. Is there anything one can do

just to

> > eliminate the suffer of fatigue?

Hi

I really feel for you it is so horrible to be like that. One thing

that has helped me more than anything else I have tried is Maca

sometimes known as Royal Maca. Although many women take it men can

also take it as it gives one a lot of natural energy. I noticed a

change in my fatigue from the very first capsule but not everyone

would expect to notice it that quickly.

I started taking 3 capsules daily 3 weeks ago and it has made such a

difference to me. I now rarely go to bed before 11 or 11.15 which

was unheard of and I am achieving so much more during the day. I do

still get some times of extreme fatigue most days but find that if I

rest a litle I bounce back. I am getting so much more hopeful and

feel much happier. Also my memory is so much improved. I used to

keep forgetting ordinary words but that has also gone and I haven't

had the problem since being on the Maca.

For me it is an amazing herb and also very inexpensive. Some people

find they need to take more than 3 capsules a day and I am

experimenting with 2 capsules in the morning and then one at

lunchtime and one with the evening meal. This seems to be working

well. I still have to take very small quantities of medication for

the brain symptoms I get but generally feel 90% better than I have

for years.

Apart from pacing which is so important are you eating frequent small

meals always containing a good portion of low fat protein. Never go

longer than 2 hours without a nutricious snack like unsalted nuts or

whole milk yoghurt. It doesn't matter if you don't feel hungry, I

haven't felt hunger for over 2 years now but just now for blood sugar

control I must eat very regularly.

I do hope my suggestions will help you to feel better.

Pam

[Guest guest]

on 5/30/02 9:01 AM, at moores@... wrote:

> There are many things that one can do to alleviate the suffering related to

> pain. But what about those suffer of fatigue, especially during a crash? I

> can only take so many more crashes. Is there anything one can do just to

> eliminate the suffer of fatigue? I know you have to try to move around a bit

> very day to keep your strength up. But what about the other 22 hours of the

> day? Is there anything that helps? I do not care what kind of drug it is.

> When I fell like I am trapped under a ton of bricks I want relief. That

> relief should not knock on out but being in a semi conscious stupor would be

> ok by me. As long as I can force myself to move around a bit so I do not

> lose to much muscle mass. But electrical stimulation could help in that

> department.

Steve,

i know exactly what you mean! I've recently just suffered a major crash so

that I could hardly move my legs and certainly couldn't even go out and take

a walk or drive anywhere. This was due to 2 things largely, I believe: 1)

the recent change in outdoor temperature to quite hot and humid 2) being

stuck in a traffic jam in a car for 3 straight hours in the polluted heat.

So I was recently asking myself the same question: I don't care what it

is‹just let me take something that will alleviate this feeling of total

fatigue and brain fag. My top votes are: ketamine, dilaudid, marijuana

(must be the right strain or else can make things worse), dexedrine,

hydrocortisone, and GH when the dose is right.

What you want is essentially a drug that happens to be a cytokine blocker:

benzos, ketamine, opiates, cannabinoids. What they do I think is block or

slow the production of immune cell derived cytokines--which are the

pro-inflammatory chemicals which your immune system uses to defend against

pathogens and hence they are known to induce many of the typical flu-like

symptoms such as extreme lassitude and letharggy, achinesss, mental

fogginess, etc.

hope this is of some help.

--

Hud (8 >{D)

hudr@...

[Guest guest]

Dear Hud,

Is this the same ketamine you were referring to? This was about the 5th

result listed on Google.

Adrienne

--------------------

WHAT IS KETAMINE?

Ketamine hydrochloride ( " Special K " or " K " ) was originally created for use as

a human anaesthetic, and is still used as a general anaesthetic for children,

persons of poor health, and in veterinary medicine.

Ketamine belongs to a class of drugs called " dissociative anaesthetics, "

which separate perception from sensation. Other drugs in this category

include PCP, DXM and nitrous oxide (laughing gas).

Ketamine usually comes as a liquid in small pharmaceutical bottles, and is

most often cooked into a white powder for snorting.

WHAT ARE THE EFFECTS?

At lower doses it has a mild, dreamy feeling similar to nitrous oxide. Users

report feeling floaty and slightly outside their body. Numbness in the

extremities is also common.

Higher doses produce a hallucinogenic (trippy) effect, and may cause the user

to feel very far away from their body.

This experience is often referred to as entering a " K-hole " and has been

compared to a near death experience with sensations of rising above one's

body. Many users find the experience spiritually significant , while others

find it frightening.

While in a K-hole it is very difficult to move. People usually remain seated

or lying down during the experience.

WHAT IS THE DOSAGE?

Most people snort small lines or " bumps " for a mild, dreamy effect. The

effect comes on within about 5 to 10 minutes.

100mg is usually enough to enter a K-hole.

If liquid is injected into the muscle, less is needed to enter a K-hole.

Effects can be felt within four minutes. (Ketamine is never injected into the

vein).

If swallowed, the effects come on in 10 - 20 minutes.

Some people become nauseous after taking ketamine.

Occasionally ketamine has been sold in a capsule as " Ecstasy, " although it is

nothing like MDMA (real ecstasy). An ecstasy testing kit can be used to

screen against fake ecstasy tablets.

BE CAREFUL.

While low doses of Ketamine can increase heart-rate, at higher doses it

depresses consciousness and breathing and is extremely dangerous to combine

with downers like alcohol, Valium or GHB.

Frequent use can cause disruptions in consciousness and lead to neuroses or

other mental disorders.

Ketamine can cause a tremendous psychological dependence. The dissociation

from one's consciousness experienced with ketamine can be highly seductive to

some people, and there are many cases of ketamine addiction.

Ketamine is illegal and possession can result in long prison terms.

[Guest guest]

on 6/2/02 11:20 AM, duckblossm@... at duckblossm@... wrote:

> Dear Hud,

> Is this the same ketamine you were referring to? This was about the 5th

> result listed on Google.

>

> Adrienne

>

> --------------------

Adrienne,

To answer your question, " Is this the same ketamine you were referring to " my

answer is: YES AND NO! YES, chemically speaking, the ketamine i made

reference to is the same as that discussed below: ketamine hydrochloride.

But NO, we're talking apples and oranges! The words below were taken from

the mouth of an afficionado of recreational drugs that must be acquired

illicitly and are taken most often in large doses to provoke an intense

'psychedelic' experience which resembles the sudden death experience,

according to one author (Dr. Karl Janssen).

On the other hand, I was referring to the licit use of ketamine obtained via

prescription--often in the form of either a nasal spray or a PLO gel which

can be applied to the skin like some progesterone creams, for example.

These preparations usually must be sought at a compounding pharmacy. They

are of a known strength and purity; and a therapeutic dose for CFS/ME is

about 1% (1 mg) the size of an average recreational dose (100 mg).

There are some details about using ketamine to treat CFS at goldstein's

website http://www.drjgoldstein.com.

> WHAT IS KETAMINE?

>

> Ketamine hydrochloride ( " Special K " or " K " ) was originally created for use as

> a human anaesthetic, and is still used as a general anaesthetic for children,

> persons of poor health, and in veterinary medicine.

> Ketamine belongs to a class of drugs called " dissociative anaesthetics, "

> which separate perception from sensation. Other drugs in this category

> include PCP, DXM and nitrous oxide (laughing gas).

> Ketamine usually comes as a liquid in small pharmaceutical bottles, and is

> most often cooked into a white powder for snorting.

> WHAT ARE THE EFFECTS?

>

> At lower doses it has a mild, dreamy feeling similar to nitrous oxide. Users

> report feeling floaty and slightly outside their body. Numbness in the

> extremities is also common.

> Higher doses produce a hallucinogenic (trippy) effect, and may cause the user

> to feel very far away from their body.

> This experience is often referred to as entering a " K-hole " and has been

> compared to a near death experience with sensations of rising above one's

> body. Many users find the experience spiritually significant , while others

> find it frightening.

> While in a K-hole it is very difficult to move. People usually remain seated

> or lying down during the experience.

> WHAT IS THE DOSAGE?

>

> Most people snort small lines or " bumps " for a mild, dreamy effect. The

> effect comes on within about 5 to 10 minutes.

> 100mg is usually enough to enter a K-hole.

> If liquid is injected into the muscle, less is needed to enter a K-hole.

> Effects can be felt within four minutes. (Ketamine is never injected into the

> vein).

> If swallowed, the effects come on in 10 - 20 minutes.

> Some people become nauseous after taking ketamine.

> Occasionally ketamine has been sold in a capsule as " Ecstasy, " although it is

> nothing like MDMA (real ecstasy). An ecstasy testing kit can be used to

> screen against fake ecstasy tablets.

> BE CAREFUL.

>

> While low doses of Ketamine can increase heart-rate, at higher doses it

> depresses consciousness and breathing and is extremely dangerous to combine

> with downers like alcohol, Valium or GHB.

> Frequent use can cause disruptions in consciousness and lead to neuroses or

> other mental disorders.

> Ketamine can cause a tremendous psychological dependence. The dissociation

> from one's consciousness experienced with ketamine can be highly seductive to

> some people, and there are many cases of ketamine addiction.

> Ketamine is illegal and possession can result in long prison terms.

[Guest guest]

H Ramelan wrote:

> What you want is essentially a drug that happens to be a cytokine blocker:

> benzos, ketamine, opiates, cannabinoids. What they do I think is block or

> slow the production of immune cell derived cytokines--which are the

> pro-inflammatory chemicals which your immune system uses to defend against

> pathogens and hence they are known to induce many of the typical flu-like

> symptoms such as extreme lassitude and letharggy, achinesss, mental

> fogginess, etc.

>

How about Singulair, a once-a-day pill for asthma? I believe it works by

blocking cytokines. And it sure is a helluvalot more benign than the stuff you

mention (except for the Medical Cannabis,

if available to you).

--

el (andrea@...) Nevada City, CA, USA

" ...wake now! Discover that you are the song

that the morning brings... "

" One is taught by experience to put a premium

on those few people who can appreciate you

for what you are. " - Gail Godwin