ADD treatment

[Guest guest]

What ADD treatments are being used? I have CFS and besides the brain

fog my mind flips from one thing to another. Is there medication or

even a very effection behavior modification exercise that smooths out

the short attention span, especially in conversation?

Thanks, Engel

[Guest guest]

Hi ! Well, my understanding is that while stimulants (such as are used

for ADD) can give one a functional boost in the short term, in the long term

they are neurodegenerative, and make us function beyond our true means,

which as I’m sure you know will inevitably lead to a crash. I know it’s

comforting to think that there is an easy answer, but there’s simply not.

But I’ll tell you what helps me.

First, I am finding that now I’m on the Neurontin/Clonazepam combo that

Cheney recommends, that my thinking is much less disordered. There are

anti-seizure meds, as he feels that we can be in a seizure-realm state much

of the time. I feel this was true for me. They are very safe, with a wide

dosage range, particularly the Neurontin (It has taken me 6 months to get

from 50 mg to 1100!). Yes, the Clonazepam is a Benzo, but Cheney feels it is

not an addiction if one needs it and doesn’t increase dosage or otherwise

show addictive behaviour. He feels it is like insulin for a diabetic,

essential and they don’t call diabetics addicted to their meds!

The other thing is to have a good sense of humor about it all, and not be

embarrassed, but have a laugh and be open about it. I often have to ask

anyone I’m talking with, to remind me what we were talking about after I gap

out or wander off mentally, which I do often LOL! I just say so. Family and

friends have gotten used to this in me, and mostly it is just fine.

You TC and Happy New Year to you and all, may everyone have

improvement this year! Aylwin xox

_____

Sent: Sunday, December 28, 2008 4:46 PM

To: CFAlliance

Subject: ADD treatment

What ADD treatments are being used? I have CFS and besides the brain

fog my mind flips from one thing to another. Is there medication or

even a very effection behavior modification exercise that smooths out

the short attention span, especially in conversation?

Thanks, Engel

[Guest guest]

Hi ,

I took Vyvanse for a short while and, like Aylwin said, I was juiced

for a little while and then crashed before the day had ended. It also

completely took away my appetite and I lost weight and became even more

tired (if that is humanly possible!). It was just too much for my tired

soul...

[Guest guest]

Thank you, , and for Aylwin's replies.

(I did not get the first group of replies by email and had to go to the site to

find Aylwin's.)

However, I am surprized that it would be stimulants and not something to calm

down.

I plan to discuss your input with my doctor. I'm already on generic Prozac and

started 5-HTP at 300 mg a day a few days ago.

Engel

" I have found an inner stillness,

but not the patience to appreciate it. "

[Guest guest]

Hi , for ADD/ADHD kids, the “speed” drugs actually have the opposite

effect and calm them down. This is not true for other folks. I don’t really

understand why though. In fact, though many of those drugs do have serious

long term side effects (like later tendency towards drug abuse), those who

didn’t take them and don’t outgrow the ADHD, will self-medicate as adults

with the speed type drugs. I had a friend who used to send her quite young

son (Gr.3 perhaps?) to school with a thermos of coffee, because it was the

only thing to keep him in his seat all day LOL! TC, Aylwin xox

[Guest guest]

Do you or have you actually seen the doctor you keep refering to? Is

your doc a specialist in our diseases?? I always recommend that people

dont just read up on this, but SEE a specialist in our condition, it

makes a BIG differnce!! Stimulants, if used correctly, will not cause

you to crash, thats very unlikely if they are used right and under the

guidance of a specialist. I always say quality of life needs to be at

the forefront. For those of us who are house bound and bed ridden,

stimulants not only give us a life, they are needed and they help us

greatly. A specialist will know what to do to help and I would follow

thie guidance they give and not be swayed by things you hear online. If

they were so bad, specialist would not be giving them - remember they

have our best intrest in mind and know this disease.

Blessings

Dr.

[Guest guest]

I have seen alot of opinion on stimulants, and I wanted to give my

input since I have one of the top 3 doctors in the world for ME/CFS

and Fibro treating me now. He has written 3 books, his latest " Your

Symptoms Are Real! What To Do When Your Doctor Says Nothing Is Wrong "

is a best seller and like a bible for treatment and understanding

these diseases for both patients AND other doctors all over the

world! I highly recommend you all get this book. Whats great about

him is he also brings holistic ideas into his approach. He has been

researching these disease for over 30 years and also has a chronic

pain and fatique clinic. His name is Dr. Natelson. He uses stimulants

as part of his treatment protocol, and since each person in different

he has a few that have been proven to help and customizes it to each

person. You should not have a crash, the whole point is to ease the

fatigue not bring more on, and side effects like racing heart and

sweating mean that med is not agreeing with you and you need to try

something different. The 3 that he uses the most are Provigil,

Ritilin, and Adderol. If you dont have a specialist treating you and

monitoring and perscribing meds like this, yes, you are most likely

going to run into issues and have a bad experiance. But that is my

point - thats not supposed to happen, and if managed correctly, it

wont. Just ask the thousand of people helped by specialist Dr.

Natelson and others that are on his level. Just becuase someone has

had a bad experiance does not give them the right to make blanket

statements that make these meds seem like a real bad idea. It just

means you were on the wrong one for you and what you were on didnt

agree with you, and most likely the doctor monitoring it was NOT a

specialist who knows what doses are best to help people like us.

Treating people like us is a whole other ball game where there are

all different rules, so a regular doctor is not going to really be

able to manage you to the highest degree you need. That is a big

problem alot of people face. I recommend that you, and everyone else,

put some time into researching specialists and finding the best one,

and going to see them. You may have to travel, but its worth it. They

will work closely with your primary care to get you the best

treatment possable with the highest level of knowledge of these

diseases and what works. I dont have insurance or money, and I was

able to do it. It was the best thing I have ever done. If stimulants

did not help, Dr. Natelson would not be working with them. When you

see a specialist, you can ask them all your question on stimulants

and get solid answers. Dont right them off when they are helpfull

just becuase you read something online. For a normal person, yeah

they are not good. But hey, we are not normal, and we need treatments

becuase of our quality of life, and that changes things, and meds

that help us have to be looked at under that light. Just as peole

with ADD have great results with these meds and thier bodies

metabolize them differently, so do ours. Most sites where you get

your information are NOT going to reflect that, remember that. You

really need to see a specialist to treat this right and use these

kinds of meds correctly for your best intrest - the right one and the

right dose helps greatly!

DR.

[Guest guest]

Hi , well I cannot speak for “CFS”, but for PWME stimulants are

definitely NEUODEGENERATIVE and lead to brain deterioration and can cause an

early death according to top ME (as vs. CFS) experts of 25 pus years’

experience with this disease. If one tries to artificially outstrip one’s

mitochondrial deficiencies and cardiac issues that cause a lot of the

symptomatology of ME, never mind what one is doing to one’s original brain

stem injury plus all the other brain impacts of ME. I am not trying to get

stroppy here, it’s just that it would be tragic if PWME who have only been

dx’ed with CFS (as with most in the US at least, though it is spreading like

cancer internationally, the blurring of the lines and the conscious effort

of Insurance industry-affiliated shrinks were not trying to “disappear” ME)

used this class of drug experience more degeneration/disease progression

from it.

I would really ask you to do some ME – as it is strictly defined – research

on this, check out HYPERLINK " http://www.ahummingbirdsguide.com "

www.ahummingbirdsguide.com for links to all the pertinent research dating

back to the thirties on this neurological disease. Remember the doctor’s

creed, which so many have forgotten, which is :first, do no harm. Aylwin xox

[Guest guest]

Excuse me, but I have. I have ME, and in the US unfortunatly ME and

CFS get grouped together, and are used as interchangable terms. My

doctor has written the book (literaly) on proper and highly

succesfull treatment for ME and CFS and for Fibromyalgia and IBS as

well. I have had this same talk with you before, I remember. You have

your opinion. But please, refrain from making what come across as

blanket statements that as I have said before could scare people off

from medications that they are on or that could be very helpful for

them. Like I have said before, some of the best and most highly

experianced specialists in the world use stimulants in treatment of

ME, CFS, Fibro. Mine does - he is the one of the top 3 doctors in the

world. I think we have been around this before - I dont think this is

the place to jump of peoples meds. Im sure not going to start posting

lengthy research studies in support of treatment to this list becuase

people can find that easily for themselves online, and this is not a

research paper site but a SUPPORT GROUP. The last time we went down

this road I made it clear that you need to be carefull not to give

medical advice if you are not a doctor, opinion and personal

experiance is different. We have to be carefull not to present

information that someone could see as medical facts supported by ALL

doctors everywhere or scare-tactic information that could cuase harm.

People should ALWAYS stick with what thier doctor has instructed them

to do until they talk to thier doctor about making any changes. Its

great to be an active advocate for your health - and you really need

to be, and to be as educated as you can and research. But it becomes

really important that you have a medical professional to bounce

things off of - becuase there is alot of crap out there. There is

also alot of opinion presented as fact. I know what you opinion is on

this. Just keep it clear thats what it is, because you are basicly

calling alot of highly dedicated, educated, and specialized doctors

who had researched ME and CFS for years wrong if thats not clear.

There are lots of us here who NEED stimulant treatment. You are lucky

that you can choose not to. But we need it, and it works, and I trust

my doctor who is one of the top doctors and researchers for ME and

CFS, who has done alot to change the way ME and CFS is understood and

treated. Also - and this is just an observation - you might loose

alot of people when you write posts that are top to bottom like a

medical text book. I think the point would better get across in more

readable terms. Please dont take this the wrong way, its just

something I have noticed. Its easy to get lost and miss what your

actual point is.

Dr.

[Guest guest]

>

> Hi , well I cannot speak for " CFS " , but for PWME stimulants are

> definitely NEUODEGENERATIVE and lead to brain deterioration and can

cause an

> early death according to top ME (as vs. CFS) experts of 25 pus

years'

> experience with this disease. If one tries to artificially outstrip

one's

> mitochondrial deficiencies and cardiac issues that cause a lot of

the

> symptomatology of ME, never mind what one is doing to one's

original brain

> stem injury plus all the other brain impacts of ME. I am not trying

to get

> stroppy here, it's just that it would be tragic if PWME who have

only been

> dx'ed with CFS (as with most in the US at least, though it is

spreading like

> cancer internationally, the blurring of the lines and the conscious

effort

> of Insurance industry-affiliated shrinks were not trying

to " disappear " ME)

> used this class of drug experience more degeneration/disease

progression

> from it.

I have to say that ANY kind of stimulant, energy drinks, caffine,

even the pseudoephedrine in cold and flu tablets make me really sick.

That's just me.

I also think there is a really danger of people overstreching

themselves because they are artificially propped-up. This could

potentially lead to a big relapse.

I'm just saying that these things, like excercise, need to be

approached with extreme caution, as they could potentially do more

harm than good.

take care, ness

[Guest guest]

I really don't want to stir the pot here, beacause the whole CFS/ME

thing is a HUGE mess worldwide. But the CDC now says that CFS and ME

are not the same thing.

http://www.cdc.gov/cfs/cme/wb1032/chapter1/overview.html

take care, ness

[Guest guest]

If CDC says that ME is different, why don't they have a separate page for

it? A rhetorical question of course. I tried to search for it but only

found ME in relation to CFS. Hi, I am new here and have been diagnosed with

CFS since 1995 and have been on disability since 1995. My daughter wants me

to try my grandsons' ADHD meds but so far I have not.

Hugs, Michele - Nana & DayCare provider to

Twins is and , 2 yrs., Zachary, 4 yrs.,

Ethan, 8 yrs., and Tony, 12 yrs.

> -----Original Message-----

> From: ness

> Sent: Tuesday, January 20, 2009 10:12 PM

>

> I really don't want to stir the pot here, beacause the whole

> CFS/ME thing is a HUGE mess worldwide. But the CDC now says

> that CFS and ME are not the same thing.

> http://www.cdc.gov/cfs/cme/wb1032/chapter1/overview.html

>

> take care, ness

[Guest guest]

They do. Im not sure where you are looking. The diagnostic criteria and

tons of ME info and ME groups abound online, as well as where it is

included with CFS -since most of those places recognise the diference

and support people with both and discuss them, also you will find

many 'Name Change' site about changing CFS to ME in the US (even though

they are different which is wierd about those groups!) Remember I told

you that the US is a little behind on the recognition of even what ME

is and the word and the seperation of the two, where in the rest of the

world it has been ME w/ the seperation of CFS for a while now. I guess

Im confused becuase I had no trouble at all finding ME information and

sites!

Dr.

[Guest guest]

I know the feeling...let¹s just try this and see what happens, especially

when you don¹t have a doctor to guide you.

I contemplated taking my cat¹s thyroid pills...didn¹t remember if he was

hyper or hypo...but I just thought why not try an see what happens. I

didn¹t

Then my horse goes on steroids every summer and, yes, I did consider taking

her pills. I (supposedly) had an autoimmune disease so why not take

steroids. Fortunately I didn¹t, but you become desperate when you don¹t

have any guidance from our ³wonderful² medical system.

That said I have heard of CFS patients taking Ritalin but best to get a

prescription by a doctor. Otherwise you and your grandson will be fighting

for the pills. You with fatigue and your overactive grandson fighting for

pills. I think that I know who will win.

You are not alone thinking about taking all sorts of stuff. As the saying

goes

³Anything is better than doing nothing² but that is probably not the most

practical approach. You need to find yourself a good CFS doctor.

Lois

[Guest guest]

>

> If CDC says that ME is different, why don't they have a separate page

for

> it? A rhetorical question of course. I tried to search for it but

only

> found ME in relation to CFS. Hi, I am new here and have been

diagnosed with

> CFS since 1995 and have been on disability since 1995. My daughter

wants me

> to try my grandsons' ADHD meds but so far I have not.

>

> Hugs, Michele - Nana & DayCare provider to

> Twins is and , 2 yrs., Zachary, 4 yrs.,

> Ethan, 8 yrs., and Tony, 12 yrs.

>

Hi Michele,

[Guest guest]

Well you NEED a doc to ok it anyways, dont EVER take meds without a

perscription!!!! Proper med on the proper dose by a specialist in our

conditions prevents the crash you talk about, that med was not right

for you.

Dr.

[Guest guest]

Chiiiiiiiiiiiil Chill

I was responding to Michele¹s post yesterday.

My whole point was that this disease pushes us to consider drastic measures.

You are fortunate that you have a great doctor. Many people out there have

no doctor at all and no support system which is tragic. That is why there

are web sites out that advertising a cure for only $69. A month. I did

fantasize about taking my pet¹s meds just like I fantasize about dating

Leonardo di Caprio. I just wanted to tell Michele that most of us have given

thought to trying weird and unusual remedies.

That¹s all.

Lois

> Im not sure who you are responding to - I have a good CFS doctor and

> would NEVER take something that was not precribed to me!!!

> I was SHOCKED when I read your post!! DO NOT EVER TAKE YOUR PETS

> PILLS OR SOMEONE ELSES PILLS JUST TO 'TRY IT AND SEE WHAT HAPPENS' OR

> JUST BECUASE YOUR HEAR OR READ SOMEWHERE ITS USED FOR CFS OR ANY

> DISEASE FOR THAT MATTER!!!!

> This is EXTREMLY DANGEROUS and not to mention, ILLEGAL too.

[Guest guest]

I agree. Relax, . You are a newer member but those of us like

me who have been a member for 4 years know that this is a safe,

supportive place where we can exchange ideas, information and

emotions. With most of the illnesses we have, nothing is universally

reliable and nothing is written in stone.

It's great you've joined us and I hope in time, you'll come to

understand the wonderful environment that this group has

established. Heated debates are far and few, however the exchange of

ideas and information is daily.

Welcome to the group!

Ursula

FM since 1999.

>

> Chiiiiiiiiiiiil Chill

>

> I was responding to Michele¹s post yesterday.

>

> My whole point was that this disease pushes us to consider drastic

measures.

> You are fortunate that you have a great doctor. Many people out

there have

> no doctor at all and no support system which is tragic. That is

why there

> are web sites out that advertising a cure for only $69. A month.

I did

> fantasize about taking my pet¹s meds just like I fantasize about

dating

> Leonardo di Caprio. I just wanted to tell Michele that most of us

have given

> thought to trying weird and unusual remedies.

>

> That¹s all.

>

> Lois

[Guest guest]

Ursula,

 

Thankyou for sending this post.  I know it was to someone else but I agree with

you.

 

It seems like when we post, is very harsh in her comments.  That makes me

feel bad because it sounds like she's yelling at people.  For someone as new as

her to be on here saying things like that, I don't understand.

 

I've been on this support group for 10 years and I always post labs and stuff

like that and people have helped me. 

 

Dr. Bell is my CFS doc and he's one of the best.  But he also is wanting me to

see a Hematologist because something wasn't right.

 

I think it's great for people to post questions.  I had asked questions about my

symptoms because even though Dr. Bell diagnosed me in 2003 with CFS, he said

your symptoms can change into Lupus or other diseases.  That's where I'm at

right now.

 

Just because I've had CFS for almost 11 years doesn't mean if my symptoms start

changing, I will always say I have CFS.  It doesn't work that way.

 

                                                       Lou

[Guest guest]

Me too

, it's great to have you here just go a little easier on your

reactions to others' postings.

We're all in the same boat and we deserve gentle support along with

gentle advice from each other.

Agreeing to disagree respectfully is embraced here.

I welcome you to our group too!

PJ

>

> I agree. Relax, . You are a newer member but those of us like

> me who have been a member for 4 years know that this is a safe,

> supportive place where we can exchange ideas, information and

> emotions. With most of the illnesses we have, nothing is universally

> reliable and nothing is written in stone.

> It's great you've joined us and I hope in time, you'll come to

> understand the wonderful environment that this group has

> established. Heated debates are far and few, however the exchange of

> ideas and information is daily.

>

> Welcome to the group!

> Ursula

> FM since 1999.

>

[Guest guest]

I always come with the sensitivity we all need, so I dont see what you

are talking about, I call it how I see it = if someone is taking cat

pills I am going to respond to that how it should be - thats not ok.

I give people real advice for real issues. If I get a lot of issues

that are on the group that need to be addressed properly I do because

thats what I do- having that here should be a breath of fresh air.

Suppport is here, and when some other issue need care so is that.

Dr.

[Guest guest]

No one ever said that they were taking animal meds or meds not prescribed

for them. They simply used that as an example. As a matter of fact, if you

read all the posts we said that we would not do it. Since when replies are

posted none of the previous message is left, it is hard to follow the

thread. Are you reading digest? If not perhaps you should if you cannot

keep the different threads in order. I found it hard myself.

Hugs, Michele - Nana & DayCare provider to

Twins is and , 2 yrs., Zachary, 4 yrs.,

Ethan, 8 yrs., and Tony, 12 yrs.

[Guest guest]

>

>

> I really don't want to stir the pot here, beacause the whole CFS/ME

> thing is a HUGE mess worldwide. But the CDC now says that CFS and ME

> are not the same thing.

> http://www.cdc.gov/cfs/cme/wb1032/chapter1/overview.html

>

> take care, ness

>

I will stir the pot for you, you can be assured that that booper

from the cdc, (small print) will eventually disappear they have their

reasons for wanting to lump them together and it is not for publics

interest.