Re: CFS, psychotropic meds and withdrawl

[Guest guest]

Hi Holly,

I know you said you can't take anything for depression, but just

wondering if you have tried a tiny amount of dothiepin (dosulepin) just

25mg - it was a life saver for me when withdrawing from neuro and psych

meds that I was put on inappropriately. I couldn't tolerate anything

else either - made me very very unwell. I'm now at the point of wanting

to come off this tiny amount, so that will be a challenge, but at the

time I started taking them ( which sounds a bitlike how you are feeling

now - and due almost entirely to people prescibong the wrong stuff; ie

the meds made me ill) it really calmed things down.

Best wishes, I know how devastating this situation is, you will come

through it, but it could be a bit bumpy at times,

Thinking of you,

Rosie

I am 36. Almost 2 years ago I was put on Elavil due to a bad

homeopathic experience leaving me panic stricken and in a bad way.

Elavil was an instant boost. I could sleep, I had more interest,

Fibro pain lessened..I felt better than I had in years. Problem

was, I also became hyper. After a year of being on it, I could not

sleep, I was excited all the time, super sex driven, creative

beyond: in otherwords I became manic due to Elavil. I even formed a

business designing jewelry due to Elavil making me so creative. I

was taken off of Elavil due to the hyperness and put on Lithium,

Zyprexa (a hardcore med for Schizophrenia) and then Lamictal. I

became flat-lined. No feelings, sleeping good, but lifeless. I

decided 3 weeks ago to go off of everything. Now I cannot sleep, I

can't eat, I am going through withdrawl from the Zyprexa. On top of

that I extremely depressed. I miss the Elavil even though I know I

can't take it.

I am not mental for 12 years of CFS, I was not on antidepressants.

I needed them due to the reaction of a homeopathic (strong stuff, by

the way).

Problem is, unlike many CFS patients, I can't take ANYTHING for

depression or anxiety. I have problems with all meds except

benzodiazepenes, 5 HTP, Tryptophan, and theonine cause me to have

nightmares beyond. I literally wake up after dreaming of violence.

It's horrible. It's not actually sleeping.

I hate this disease. 18 years of being ill. I am too tired to

muddle through info online. I am on disability, a small sum as many

know, and want to know that the next expensive test I pay out of

pocket for is WORTH IT.

I have had all fillings out (mercury) 3 years ago and done protocol

for that.

Has anyone been through something like this...is anyone sleep

deprived and sensitive to so many meds?

Holly

[Guest guest]

>

> I am 36. Almost 2 years ago I was put on Elavil due to a bad

> homeopathic experience leaving me panic stricken and in a bad way.

> Elavil was an instant boost. I could sleep, I had more interest,

> Fibro pain lessened..I felt better than I had in years. Problem

> was, I also became hyper. After a year of being on it, I could not

> sleep, I was excited all the time, super sex driven, creative

> beyond: in otherwords I became manic due to Elavil. I even formed a

> business designing jewelry due to Elavil making me so creative. I

> was taken off of Elavil due to the hyperness and put on Lithium,

> Zyprexa (a hardcore med for Schizophrenia) and then Lamictal. I

> became flat-lined. No feelings, sleeping good, but lifeless. I

> decided 3 weeks ago to go off of everything. Now I cannot sleep, I

> can't eat, I am going through withdrawl from the Zyprexa. On top of

> that I extremely depressed. I miss the Elavil even though I know I

> can't take it.

>

> I am not mental for 12 years of CFS, I was not on antidepressants.

> I needed them due to the reaction of a homeopathic (strong stuff, by

> the way).

>

> Problem is, unlike many CFS patients, I can't take ANYTHING for

> depression or anxiety. I have problems with all meds except

> benzodiazepenes, 5 HTP, Tryptophan, and theonine cause me to have

> nightmares beyond. I literally wake up after dreaming of violence.

> It's horrible. It's not actually sleeping.

>

> I hate this disease. 18 years of being ill. I am too tired to

> muddle through info online. I am on disability, a small sum as many

> know, and want to know that the next expensive test I pay out of

> pocket for is WORTH IT.

>

> I have had all fillings out (mercury) 3 years ago and done protocol

> for that.

>

> Has anyone been through something like this...is anyone sleep

> deprived and sensitive to so many meds?

>

> Holly

>

** Been there, done that. I eventually made it out of the drug world

and can sleep naturally again, but still have CFS. I would say the

most important part of this was to transition from being a type-A

person to being a recovered type-A, maybe a type-B+. It is possible,

but not easy. I used NLP heavily, and combined a number of natural

treatments, including several rounds of salt/c, The Body Ecology Diet,

several supplements to help with neurotoxin clearance (including

phosphatidylcholine), and worked through some life-long emotional and

career issues.

In my experience, the psychotropic drugs are crutches for maladapted

neurochemistry, which is maladapted due to the presence of neurotoxins

over a long period of time. You just must peel the layers of your

pathologies back one at a time. Going cold turkey is not the best

solution, if possible titration is best, particularly of the heavy

hitters like SSRI and Benzo drugs (I came off both).

I wish there was some good reseach into integrated approaches to CFS

treatment, becasue that is the only thing that has worked for me.

I posted quite a bit about anxiety on my blog, about a year ago.

--Kurt

www.kurtsprotocol.blogspot.com

[Guest guest]

I certainly have been thru the insanity of withdrawals from doctor drugs.

Including the nightmares. And I know the mania, too. Hang on, it will pass. And

the not eating. (Homeopathics always help me Did you ever tell the homeopath

about yr bad reaction? Sometimes they can fix it. On the other hand, I cannot

tolerate acupuncture, also very destabilizing)

After all sorts of problems, I am learning how to take tiny amounts of stuff.

There is one product I only take about once every ten days, and then I take a

tiny amount. (DHEA) I particulrly like liquids because I can count the drops.

Have you ever tried herbs? I can use 10-14 drops of St. s Wart, foor mood

elevation and energy, but any nore and I am all hyped up..

Oh: now I remember what really helped the withdrawals: massage. Do you take hot

baths? CAn you get to a hottub?

You might find sublingual b12 helpful. It is like giving your brain a bath. Are

you able to take walks? That can help, too. And lots and lots of water.

I have to say,it really, really helped to pray: " GOD: HELP!!! " wheile I was at

the bottom of an arroyo where no one could hear me yelling.

I am older but better now. Still praying. Not so loudly.

Adrienne

CFS, psychotropic meds and withdrawl

I am 36. Almost 2 years ago I was put on Elavil due to a bad

homeopathic experience leaving me panic stricken and in a bad way.

Elavil was an instant boost. I could sleep, I had more interest,

Fibro pain lessened..I felt better than I had in years. Problem

was, I also became hyper. After a year of being on it, I could not

sleep, I was excited all the time, super sex driven, creative

beyond: in otherwords I became manic due to Elavil. I even formed a

business designing jewelry due to Elavil making me so creative. I

was taken off of Elavil due to the hyperness and put on Lithium,

Zyprexa (a hardcore med for Schizophrenia) and then Lamictal. I

became flat-lined. No feelings, sleeping good, but lifeless. I

decided 3 weeks ago to go off of everything. Now I cannot sleep, I

can't eat, I am going through withdrawl from the Zyprexa. On top of

that I extremely depressed. I miss the Elavil even though I know I

can't take it.

I am not mental for 12 years of CFS, I was not on antidepressants.

I needed them due to the reaction of a homeopathic (strong stuff, by

the way).

Problem is, unlike many CFS patients, I can't take ANYTHING for

depression or anxiety. I have problems with all meds except

benzodiazepenes, 5 HTP, Tryptophan, and theonine cause me to have

nightmares beyond. I literally wake up after dreaming of violence.

It's horrible. It's not actually sleeping.

I hate this disease. 18 years of being ill. I am too tired to

muddle through info online. I am on disability, a small sum as many

know, and want to know that the next expensive test I pay out of

pocket for is WORTH IT.

I have had all fillings out (mercury) 3 years ago and done protocol

for that.

Has anyone been through something like this...is anyone sleep

deprived and sensitive to so many meds?

Holly

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

I tried St. 's Wort and became really hyper. I never tried the

liquid. Right now I just want to get through the withdrawl and get

some sleep hopefully, that way I can decide what to do next.

That homeopath would not listen to me when I told her how bad I was.

She thought I should work through it. She was nuts...literally,

telling me I would never get better without HER.

Holly

[Guest guest]

>

> I tried St. 's Wort and became really hyper. I never tried the

> liquid. Right now I just want to get through the withdrawl and get

> some sleep hopefully, that way I can decide what to do next.

>

> That homeopath would not listen to me when I told her how bad I was.

> She thought I should work through it. She was nuts...literally,

> telling me I would never get better without HER.

>

>

> Holly

>

** I also reacted poorly to St 's Wort. I have some P450 problems

that may be related to that (my cytochrome 2D6 is mutated, which

caused real problems with some SSRIs that are cleared by that enzyme).

I tried Valerian, many herbals, and the only herbal that helped was

Organic Chamomille tea (very calming and relaxing). But not enough to

sleep. Eventually I gave in and went back on the benzo for sleep (I

used Ativan). Then I gradually titrated off the benzo, while going

through the NLP to re-program the brain (I used the Linden method and

meditations). And I was taking salt/c part of the time during this,

and I think that really helped. And getting sunlight daily to help

with the melatonin. BTW, taking melatonin also did not work.

--Kurt

[Guest guest]

Kurt,

you will have to excuse me but a lot of what you mention is foreign

to me....P450 for example. How did you find out what is mutated and

not working...what tests? I am new to this.

I am on Ativan as well. I don't have a problem falling asleep...its

staying asleep. I wake up in a panic or my nervous system just

fires on like an engine. Then I develop all of this pain. I also

have no appetite.

I miss being on the elavil in that it gave me interest and energy,

but I can't take it due to the mania. It caused me to shop

excessively and talk to myself. My serotonin is so low from the

urinalysis test. I don't know what to do about that.

I don't know what NLP is. I am so exhausted right now, I can't

research all of this stuff on the web until I get some sleep.

Thank you for reaching out to me. I am lonely here and live alone

and not many people get this; even those with CFS. They (my friends

with the illness) are all helped by some med.

Holly

[Guest guest]

I understand " traditional " remedies can cause extreme reactions, but they are

expected and dealt with by the practitioner.

But there are always bad apples.

Adrienne

Re: CFS, psychotropic meds and withdrawl

I tried St. 's Wort and became really hyper. I never tried the

liquid. Right now I just want to get through the withdrawl and get

some sleep hopefully, that way I can decide what to do next.

That homeopath would not listen to me when I told her how bad I was.

She thought I should work through it. She was nuts...literally,

telling me I would never get better without HER.

Holly

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

>

> Kurt,

>

> you will have to excuse me but a lot of what you mention is foreign

> to me....P450 for example. How did you find out what is mutated and

> not working...what tests? I am new to this.

** I reacted to several different drugs, and also to benedryl. If a

person has an overdose effect from a regular dose of benedryl, they

have a problem with a liver enzyme called P450 2D6. I learned about

this years before the testing was available. Now a person can take a

test to find out about the P450 enzyme system (Gennovations is one lab

that runs this). These are simply liver enzymes, they break down

chemicals. And if you do not produce one, or have low production, you

do not handle certain chemical toxins very well. This is very common

with CFS.

> I am on Ativan as well. I don't have a problem falling asleep...its

> staying asleep. I wake up in a panic or my nervous system just

> fires on like an engine. Then I develop all of this pain. I also

> have no appetite.

** This is a complicated problem. I had this also, but eventually

solved it. Too complicated to explain how in a few sentences. The

short version is - you must work on a lot of variables simultaneously.

Many things can be happening at night.

> I miss being on the elavil in that it gave me interest and energy,

> but I can't take it due to the mania. It caused me to shop

> excessively and talk to myself. My serotonin is so low from the

> urinalysis test. I don't know what to do about that.

** Much of our serotonin is produced in the gut. So digestive

problems are one place to look. I believe that in my case salt/c

corrected much of this pathology, increasing serotonin. Salt/c is a

way to 'pickle' the gut, salt kills the bad bugs (gram negative) and

not the good bugs.

> I don't know what NLP is. I am so exhausted right now, I can't

> research all of this stuff on the web until I get some sleep.

** Neurolinguistic programming. I used an approach from

www.panic-anxiety.com. Sounds tacky and a sales-letter type of

website, but the method works for many people.

--Kurt

[Guest guest]

> >

> > Kurt,

> >

> > you will have to excuse me but a lot of what you mention is foreign

> > to me....P450 for example. How did you find out what is mutated and

> > not working...what tests? I am new to this.

>

> ** I reacted to several different drugs, and also to benedryl. If a

> person has an overdose effect from a regular dose of benedryl, they

> have a problem with a liver enzyme called P450 2D6. I learned about

> this years before the testing was available. Now a person can take a

> test to find out about the P450 enzyme system (Gennovations is one lab

> that runs this). These are simply liver enzymes, they break down

> chemicals. And if you do not produce one, or have low production, you

> do not handle certain chemical toxins very well. This is very common

> with CFS.

****Hi Holly,

This is the test Dr. K wants you to do -- to find out about the

enzymes used in detoxification.

Glad you're getting support (:-))

I'm using a pseudonym. J

>

> ** Neurolinguistic programming. I used an approach from

> www.panic-anxiety.com. Sounds tacky and a sales-letter type of

> website, but the method works for many people.

>

> --Kurt

**** There are people who do this in your area. A lot of therapists

learn it too, so sometimes you can get it covered.

With love, from J

[Guest guest]

I myself have found homoeopathics to help me greatly, Im on them right

now actually and they are helping me feel better emotionally (Im

feeling happier since Ive been on the one I are on now). The thing is

one needs a good and qualified homoeopath so one is getting the right

medicines and dosages. Its a pity you didnt go to a better one to get

the problem the other caused you " undone " .

The one treating me.. also fixed my lack of ability to

sleep..insomina which I'd had for a long time.. was fixed many months

ago now and I havent had that problem return. Last week he fixed a lot

of my CFS dizziness.. it turned out that a lot of my dizziness was

actually cause of my neck (He's a qualified chiropractor..but used

homoeopathic medicines to help it as he prefers them, within minutes I

wasnt feeling dizzy). So in my experience.. homoeopathics medications

can help greatly.

I too tried St Wort..but after 3 weeks of taking the recommended

dosage on the bottle that I'd brought from the Health food store I had

to stop taking it, (over in Australia one can by it in supermarkets or

health food stores, it isnt regulated). I had like a manic like rapid

mood cycling eposide on it and ended up getting what appeared to be

serotinon syndrome so badly that I got rushed to hospital in an

ambulance and had to stay there for a couple of days. (that happened

several weeks back)

I recently tried Lovan for the CFS mood swings and emotional stuff

(SSRI drug).. and got an adverse reaction from taking half of the

lowest dosage of pill. (headache, felt hung over, numb face and mouth

from it, it also made me want to go to bed and sleep at a time when I

usually wouldnt have needed too). So anyway.. so now Im taking

homoeopathic meds to help my severe mood swings and emotions.

Take care of whatever you take as we (those with CFS) seem to be

highly sensitive to things and always make sure that the person who is

treating you, truely knows what they are doing.

.........................................................

>

> I tried St. 's Wort and became really hyper. I never tried the

> liquid. Right now I just want to get through the withdrawl and get

> some sleep hopefully, that way I can decide what to do next.

>

> That homeopath would not listen to me when I told her how bad I was.

> She thought I should work through it. She was nuts...literally,

> telling me I would never get better without HER.

>

>

> Holly

>

[Guest guest]

Kurt

Is it okay to use ascorbate form of ascorbic acid in Salt/c program?

thanks.

Nil

Re: CFS, psychotropic meds and withdrawl

>

>>

>> Kurt,

>>

>> you will have to excuse me but a lot of what you mention is foreign

>> to me....P450 for example. How did you find out what is mutated and

>> not working...what tests? I am new to this.

>

>

[Guest guest]

>

> Kurt

>

> Is it okay to use ascorbate form of ascorbic acid in Salt/c program?

> thanks.

> Nil

Yes. In fact, right now I am using Calcium Ascorbate (Ester-C) about

half the time. I also use ascorbic acid crystals part of the time.

Incidentally, I have also switched salt to an additive-free

canning/pickling salt (by Morton) and that seems to be working as well

as the expensive medical-grade salt tablets or the sea salt. In fact

maybe a bit better.

Also, in order to reduce any possible GSH depletion from the Vit C, I

have changed the ratio of Salt:C to be 2:1. So 1g salt and 500mg C.

And that works great, maybe even better than 1:1.

I am also using a few complimentary therapies to salt/c and they seem

very important, in fact the past few months my endurance and energy

have improved significantly. I could detail if you like.

--Kurt