HIV and ADD

[minismom]

Not sure if this is the right place for this thread.  If not, feel free to move it.  Also, I appologize if this has already been covered. Here's my question:

I've read the posts about "brain fog" and "AIDS daze".  From what I gather, the main issues are short term memory (forgetting why you entered a room), and long-term concentration.  Has anyone been diagnosed with ADD or been put on meds for ADD after becoming a pozzie?  If so, has it helped? What meds were you put on?  Did you have any side-effects; ie: change in appetite, increased blood pressure?

If you've been dx'd ADD but have found strategies for helping yourself "stay on task", what has worked?  I'm asking because mini was dx'd with ADD when she was dx'd dyslexic and apraxic just over a year ago.  I thought the seeming lack of concentration was more because she wasn't  comprehending but we're noticing more and more she just can't stay on task.  We really "hate" to put her on more meds, but will do what is in her best interest.  Just trying to get some input from people who have been there, done that. 

Thanks in advance!
Mum

[Joe K]

Hello Mum,

I have never been diagnosed with ADD, but I have had serious depression and anxiety for over 30 years and take very high doses of anti-depressants to control both my depression and anxiety.  About a year ago I noticed that I was having major brain fog and freeze (difficulty talking) and was ready for bed four hours after awakening.  Believe it or not, what has worked for me is Ridlin and this past year has been fantastic.  What I like about the drug is that it does not make me hyper, but rather more awake and with more clarity of thought than I have had in a very long time.

I take one 10mg dose at 9 am, a second at 12-1 pm and a final at 4 or 5 pm, but only if I need it.  One drawback to the drug is if you take it too late in the day, it can act like caffeine and cause trouble sleeping, but I have not had much of that problem.  What I really love about the drug is the alertness and clarity of thought that it provides me, without my feeling like either flying to the moon, or jumping out of my skin.  I've tried some other similar drugs but had too much of that "speedy" feeling, not a good idea when I also have high blood pressure.

I would suggest you discuss this with Minis doctor and maybe try a small dose and see the effects.  I agree that you always want to limit the number of drugs you must take, but sometimes quality of life is more important and if such a drug could add to hers, then as a parent myself, I know you will want to explore that option.

[RapidRod]

Just a note Ritalin has the opposite effect on children. It used to calm kids but it's used as speed for adults. I take it, 20mg x2 and it helps with CFS caused by AIDS.

[BT65]

I wonder, before deciding to put Mini on more meds, if there is some other kind of therapy or something that could help Mini to learn how to keep herself on task.  Is there a good counseling center nearby, mum, that maybe you could check into?  I realize some children might need a med like Ritalin, but I believe that is should only be used in extreme cases (in children).  Just my opinion.

[bear60]

I was thinking the same thing as Betty.  Maybe there is an "exercise" ( a mental exercise) that would help.  I have heard for instance, that doing crossword puzzles helps keep the brain function going good for us Seniors.

[carousel]

I am very sceptical to say the least when I hear of the amount of people being diagnosed with ADD and of the way in which pills are given out for it.

My own personal experience is that for a long time, I thought that I experienced what I thought was brain fog and was unable to concentrate on anything for any length of time.  In my case, tt was depression.  My mind was elsewhere.  Everyday experiences simply bounced off me and did not register. I was wrapped up in my own little world, detached from those around me.

I was wondering if Mini is interested in the things that she is expected to do and is the lack of concentration aimed at certain things or is more generalised.  Does the cpncentration come and go.  Are there other ways of describing the situation she is in rather than having ADD, for instance that she might be sad, or wants to think about other things.

My own personal view is that too many people are being medicated for disorders that could be helped by other interventions such as therapy.  Medication may help, but it won't solve the underlying issues.

[minismom]

To answer Betty and Bear, yes, we have some strategies given to us by the same psychologist who dx'd her with dyslexia and apraxia (and mentioned that he believed she had ADD, not in the "traditional" sense but in having problems staying on track.)  I've also e-mailed some folks and talked with therapists about different strategies that could help.  Believe me, adding more meds to her system is not our 1st choice, but there may come a day when we've exhausted all other alternatives.

 She isn't hyperactive by any stretch of the imagination and we finally have an appointment to see her PID to discuss changing her meds to some that have lesser side-effects on the 11th.  Her MRI could also provide some answers for us.  But, she has a lot of issues with staying on task.  She notices it, too, and asks why we think her brain isn't working right (her words, not our's).  Even if she just needs something to help get her over the "hump"...I don't know - that's why asked it here.

 I think I've said it here, or maybe in a PM, I'm not sure, but when we see the doc next week, we want to go with options already to discuss instead of only showing up with questions and then sitting waiting for the doc to "figure" out something.  We're trying to be more proactive and welcome any and all advice. 

Thanks and hugs to everyone who has posted here.
Mum

[minismom]

Carousel,
sorry I missed your post before responding to Bear and Betty's.  She is interested in many things and is generally a very happy child (except when she's told "no" - but what queen likes that?).  She has documented learning disabilities and both st/lt memory issues.  There are times when she's doing things she really likes, ie: coloring, playing with playdough, ect, that we find her just staring into space.  We ask her what's wrong and her answer is always, "I dont know".  If she's given a "list" of things to do, like "put on your pajamas, brush your teeth,and come get your vitamen" - a very common night time routine - something is going to get skipped.  Tell her "we're about to leave, you need to get ready", she'll start to walk out the door without her shoes and say she "forgot".  Or, she'll have both socks on and one shoe.  If anything competes for her attention, things just don't get done.  And, school work?  Oh, my goodness!  She'll do 1 or 2 things on a sheet, then stare off into space.  We're constantly telling her to finish her work, or stay on task, and asking if she needs help, if she understands.  Maybe ADD isn't the right term to use, but she does have issues focusing and staying on task.  We're simply trying to find out what others here do / don't do and what's worked for them. 

Thank you for your response.
Mum

[marc11864]

I was diagnosed with ADD. It was actually right before I was diagnosed with HIV and coming off a major use of methamphetamine. Ironically, the methamphetamine is what tipped us off about the ADD!

That all being said, clearly it is difficult to say which has had more influence on the symptoms you noted which I too have had.

In any event, I can offer my sympathy on this and a first-hand report on the efficacy and safety of both Stattera (which I initially was prescribed for the ADD) and Concerta which I currently take. Both are quite good actually and they really do help me in any case (HIV or ADD). If not for one bothersome side effect of the Strattera I'd still be taking it as it worked quite well and unlike many of the drugs out there for ADD it's a different class of drug without that occasional "speedy" effect. It seems to be well tolerated by children and adults for ADD symptoms. I highly recommend speaking with Mini's doctor about this particular drug. I was on it for almost two years and it really helped me focus on things in my life better! It is affected by Norvir so if Mini is taking any HIV med with Norvir or even taking Norvir itself, it will boost the efficacy of the Strattera inclusive of some side effects.

Good luck Mom! 

[David_CA]

I take Adderall for ADD.  I was initially prescribed Ritalin but switched to Adderall about 8 years ago.  As to Carousel's post, I can't say that I think that too many people are prescribed meds for ADD, though I'm sure some take it 'cause they like it.  It's actually pretty difficult to get prescribed either of those here.  I do think that it helps with the weird feelings from Sustiva and Atripla.  I remember a couple of threads a while back dealing with taking Sustiva or Atripla in the mornings... several members who take those meds early in the day mentioned that they also take drugs for ADD. 

David

[mjmel]

I take dextroamphetamine 5mg. for fatigue and mental focus. I never speed; my focus has improved much.

We are all on chemicals to improve the quality of life diminished. Why deny her.

Mike M

[BT65]

OK mum, you've heard about several different types of meds.  But I still think you should try something else before putting Mini on these meds.  I was on dextroamphetamine myself, but at a much higher dose than what mjmel is taking. (Actually I was on 15 mg 3 x a day)  What ended up happening to me was that I got visual and auditory hallucinations.  Just be careful and do whatever it is that's best for Mini.

[redhotmuslbear]

Let me start off with my favorite caveat, just because we've got HIV doesn't mean that everything that afflicts us has a connection to it.  Without a great deal of testing, it may be difficult to pin mini's behaviours on HIV, HAART (like they study what it could do to developing kids before approval), or a pre-disposition that would have surfaced anyway.

Just a note Ritalin has the opposite effect on children. It used to calm kids but it's used as speed for adults. I take it, 20mg x2 and it helps with CFS caused by AIDS.

Actually, the pathway for treating ADHD in children and adults is the same as it is for perking up adults with CFS.  Stimulating part of the brain brings those of us with ADHD back into balance, such that we can stay on task and carry on effectively.  It may seem to make us less erratic, but I would not call it calming:  I am less likely to feel the need to talk just to fill air when medicated, but I am no less opinionated or potentially "inappropriate" when I do open my mouth.

I am currently on 80mg qd pm Stratera -- it's non-stimulant, but it's boost of norepinephrine production has sexual side effects, most notably performing "right through" an orgasm--along with 20mg qd am Adderall dispensed as generic amphetamine salts.  We added the Adderall two years ago at 10mg, then bumped it up a year ago with moving the Stratera up from 60mg, when behavioral changes were noted by my partner and co-workers.

I was diagnosed with adult-onset ADHD in 1995, a few months after returning to work following the last for 24 brain surgeries between 2/80 and 12/94 for spinal fluids shunts.  The docs in 95 put me on Zoloft with an escalating dose of Ritalin.  The problem for me was that the dose of Ritalin to help my mind caused me to be highly aggressive, and the Zoloft was more likely lead to suicide for the lack of an orgasm for three months and an erection for six weeks..... "Mr Happy" had never been so un-happy!  So, within six months of starting meds, I was off of them and managed to do well until 2003 when my partner noticed me putting ice cream in the oven, making bizarre word substitutions (like "penis" for "glove"....my mind went: glove, latex, condom, penis!), and driving a few blocks to I-395 which I grew up with, only to take bizarre turns to get wherever I was supposed to be headed.  A shrink started me on 60mg of Stratera which had just come on the market, and the world was new to me!

Anyway, back to the beginning, I had been a high-functioning over-achiever before the first surgery which occurred a couple months before my 15th birthday--I figured it was a supreme being getting me back for having sex with a friend for over six years!  Anyway, I got my acceptance letter to Rice University on my 15th birthday and prepared to start college life, only to have another surgery during what was supposed to be my orientation week, and another in November.  Looking back, I know that my ability to concentrate and perform was affected by those surgeries and others that followed, but I was afriad to verbalize it and didn't know if I could be helped. 

Instead, I stumbled onto hustling, cocaine, and MDMA;  and the drugs made the world seem right.  I could read 300 pages at a time and crank out massive research papers in a jiffy.  I also got myself infected with HIV somewhere in the midst of nights where, as I'll often muse, I could have sex with 50 or 60 men and know whom to send thank-you notes the next day, if only I knew their names!  When I told my prescribing psychiatrist two years ago of the past drug use, he was shocked that I had not been on ADHD meds before 95 in order to stay clean.  He also marveled that I had enrolled as a part-time graduate student and could juggle work, school, and leadership in community activities and mantain an A average.

Honestly, without the meds, my PDA, and an elaborate scheme of countermeasures, I would be a total mess.  Behavioural therapy would be a stretch for a child to grasp and implement.  I trust that you will take the choices that appear best for mini if a thorough evaluation indicates ADHD meds:  as I mentioned, there is a non-stimulant option that could assist.

Namaste,
David

[RapidRod]

Ritalin, given to children ADD and ADHD has a calming effect with those that have hyperactivity. Those that are treated with Ritalin that have CFS it has the opposite effect.

[Miss Philicia]

I take dextroamphetamine 5mg. for fatigue and mental focus. I never speed; my focus has improved much.

We are all on chemicals to improve the quality of life diminished. Why deny her.

Mike M

Honey, you and I both know that's just double boiled drano and battery acid in a gel cap!

[mjmel]

Honey, you and I both know that's just double boiled drano and battery acid in a gel cap!

Don't make me go to philadelphia and spank you! Behave! we are not referring to street meth as you new yorkers knew it.

SNAP! ( )
Mike M