RE: My new meds-anyone had experiance with them??

[Guest guest]

Hi , Yes, Provigil is used by some PWME to be more functional, but it

is actually not a good thing in the long term. It burns out your system

(neurodegeneration) by overstimulating it (it’s really like speed) beyond

what is non-harmful for the actual level of disease severity you are

experiencing. It also leads to adrenal insufficiency, which we already deal

with. So, it is a matter of short term gain and long term pain…sorry about

that – it’s just like when PWME artificially keep themselves going with

coffee or red bull or what have you – but the payment day for that

inevitably comes. In fact it accelerates and exacerbates the disease

process.

It reminds me of when my thyroid went hyper (not hypo, which is more usual)

– I had all kinds of energy, I thought I was getting well and did some

fabulous things, but when I crashed, look out! So, while I really feel for

you in your pain and fear with this relapse, I would really ask you to

consider that what your body needs is not to be stimulated to the point of

more temporary ability, but rest, real rest, to heal and come back from it

to whatever degree. I believe this info is on hummingbird’s, check the meds

section. Good Luck, Aylwin xox

[Guest guest]

But I am bed ridden and house bound, some times so weak I cant take a

shower because I cant stand up. That is not quality of life, and I

also know my new specialist, Dr. Natelson in NYC who is one of top

experts in the world, who only sees the most severe of cases, uses it

with GREAT success, as do many other specialists. This is actualy the

LEAST of the " dangerous " meds for severe, severe fatigue used in

ME/CFS - sometimes Provigil isnt strong enough and drugs like Adderol

and other drugs that are much more like " speed " need to be used, and

they are used with great success by lots of experts. There are alot

of people " afraid " of certain meds by what they have heard or read

somewhere or a bad experiance they had, but the best docs in the

WORLD for these diseases arent stupid and would not use something

that A. wasnt needed and B. Risks out weighed the benefits Yes not

all meds are pleasent in the long run, but some of us have no choice -

I have to take some of the stronged pain meds on the planet and have

had to do so for the past 5 years, Im sure not " ideal " , but you know

what?? Without it my quality of life would be a big fat zero. Some

times we have to take meds we may wish we didnt have to. But

sometimes they are also part of treatment and are used with great

success by the most up to date, top experts in the world. Some people

are in a postion like me, me a very very severe case, that NEED to

have treatment for fatigue becuase they cant even walk to the

bathroom. I am back using a cane and a wheelchair, and hopefully the

Provigil helps, but if not I have not problem taking the stronger

meds that my doctor, one of the top 3 there is, recommends becuase I

need it, and its used in treatment, and I want treatment. I dont want

people to be scared away from the meds used in treatment becuase if

they are not right for you, if you dont need them, and if the risks

outweighed the very real benefits to you, you would not be perscribed

them to begin with, and most of all - the best experts in the world

would not be using them with awesome results. When you have a serious

disease, you may not like it, but may have to take meds that help you

and give you more of a normal life. To not take meds that are part of

a treatment protocol is not an option for people in my situation.

[Guest guest]

I've taken provigil, and Alwin has the right of it. It does give a

tremendous boost, a pretty decent energy high, but what goes up must

come down. When you come down you tend to come down quite a bit. I

still use it occasionaly but only when I MUST use it, like an airplane

trip, or during a crucial harvest season. (my family owns a pumpkin

farm and during the weekends on october I am the only one who can do

the hugely popular pig races) Good luck and God bless with your

illness.

Amos the farmer who races(yes like in horse races) pigglies

[Guest guest]

Hi Amos! Yes, my understanding from the work of Dr. Cheney and others that,

if Provigil is used over time, it causes relapse, as one is living

artificially beyond the means of one’s mitochondrial AND cardiac capacities,

and so can hasten neurodegeneration, progression of the cardiac/circulatory

issues, and can cause a much worse level of disability or even death (from

over-exertion) in the long run.

I sure understand the temptation though!!! I think you are wise to use it

only when you need it most. Hey, I’m a 3-cuppa-tea gal in the morning! Not

perfect by any means LOL! You TC & good to hear from you! Have a lovely

holiday. Aylwin xox

[Guest guest]

Hi , my heart goes out to you dear, in your severe condition, which I

have also been in at times. I do understand the terrible dilemma of short

term gain vs. long term risk…hey, since my own relapse, I actually started

smoking a small amount of organic tobacco to bring my very low BP up to the

level where I could stand up unsupported, and it took months. (I’m a cane &

wheelchair gal myself, on the rare occasions I can get outside for more than

a few minutes.) After researching, I concluded that it was LESS risky than

the pharmaceutical alternatives, however radical.

But of course there is a LOT of medical disagreement about almost every

aspect of diagnosis and treatment. I, after 22 years of having ME, trust

what Drs. Hyde & Cheney say, that the Provigil can just lead to further

neuro/cardiac degeneration faster in the long run. You did ask the question,

so I answered from my experience and research. Quality of life now is

important, but just as important in 10 or 20 years. Speaking from

experience, it can always get worse. It’s not a matter of not pleasant, it

is a matter of dying early from cardiac failure or ending in dementia and in

care…not my idea of what I want for myself. But, I say, who wants to live

until 80 or 90 like this??? Not me!

Anyway, we all must make our own decisions about these things. Just don’t

trust the word of ONE doc! Keep on keeping on with that research! Meanwhile

you are doing what you feel is best, and know that I send you my best wishes

and respect for your fight for health and better function. Have a Blessed

holiday season dear. Aylwin xox