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Author Topic: Mental health and sustiva  (Read 13890 times)

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Offline aztecan

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Mental health and sustiva
« on: June 15, 2007, 01:56:57 PM »
I think this is the right place to post this because it has everything to do with keeping my mental health intact.

OK, I knew about the dreams Sustiva can cause, the depression, etc. What I didn't know - and nobody bothered to tell me - was the feeling of anxiousness.

I guess they call this anxiety in the literature. I hate it. I feel like something terrible is going to happen. I can't shake it and I can't seem to work through it.

As far as the Sustiva dreams go, is it normal not to be able to tell the difference between being awake and being asleep?

I often wake up feeling as though I haven't slept at all. Yet, I know I must have because hours have passed. But I often wonder if I am dreaming being awake or am really awake.

I dreamed I was smoking last night. It was so real, I awakened with a cough two hours late.

Sometime during the night, the dishes were rinsed and put in the dishwasher. I was beat, so I thought I would do it in the morning. I woke up, went to make coffee, and they were already put in the dishwasher.

Since I live alone and, barring any visits from friendly ghosts, I must have gotten out of bed and put them in myself. I used to sleepwalk when I was young. I haven't in years. It appears I am at it again.

I am just afraid I will do something in my sleep I shouldn't and wake up in a mess or injure myself.

I used to sleepwalk when I was very tired or exhausted. The problem is, I feel that way all the time now. I could sleep 24 hours a day and never feel rested.

I doze off without warning. I had to stop repeatedly on a drive home the other day because I found myself staring blankly at oncoming traffic - with the car drifting that way. It was only a two-hour drive and shouldn't have bothered me in the least.

What I want to know is, have others experienced this and, if so, did these psychological symptoms pass. It has been six weeks since I started Sustiva. I was hoping I would have adjusted by now.

How long did it take for people to get back to being normal again?



"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Ithaca_Nights

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Re: Mental health and sustiva
« Reply #1 on: June 15, 2007, 02:11:20 PM »
I have not sleep walked or had the dreams, but have had the anxiety and not feeling at all rested.  I have been on sustiva since last July.  I take xanax for the anxiety part.  It has gotten a lot better, but has not completely gone away.  I take .5 to 1.0 mg at night before bed and sometimes during the day, but that is rare anymore.  Hope this helps you out.

Offline guynsotulsa

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Re: Mental health and sustiva
« Reply #2 on: June 15, 2007, 02:22:25 PM »

I have been on it since jan 20th, and in the beginning I had to take a sleeping pill... The dreams are very vivid!!  I will tell ya that it does get better the dreams that is.. I no longer need the sleeping pill...

If its to be??? Its up to me!!!

Offline lucas clay

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Re: Mental health and sustiva
« Reply #3 on: June 15, 2007, 02:23:16 PM »

As far as the Sustiva dreams go, is it normal not to be able to tell the difference between being awake and being asleep?

I often wake up feeling as though I haven't slept at all. Yet, I know I must have because hours have passed. But I often wonder if I am dreaming being awake or am really awake.

 I have the 2 symptoms you have and its still the same for me after2 years.
I hate having to go to work dead tired, or dreaming about work and then having to go to work dead tired .Its like pulling 2 shifts and only getting paid for one.
I hear the side effects ease up for most people with time, hope they do for you


Offline Andy Velez

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Re: Mental health and sustiva
« Reply #4 on: June 15, 2007, 03:07:34 PM »
Mark, I'm really glad you opened this thread. I had been looking earlier today at the similar one you have in LTS and debating whether to move it here or not. Obviously I decided not to even though the issue is certainly very relevant in this section.

It's such a powerful drug. Which is why reactions to being on it can be so intense. The plus is how effective it is when it kicks in treatment wise. While intense reactions to it are fairly common, generally I have that around a month or so those taper off. But 6 weeks wouldn't be so out of the ballpark to still be adjusting.

Have you discussed this concern with your doctor? That business of having to pull over when you're driving is understandably concerning. I think a conversation with your doc is in order. If you're not due for a checkup soon then I would say pick up the phone.

Hugs to you buddy,     

Andy Velez

Offline Dachshund

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Re: Mental health and sustiva
« Reply #5 on: June 15, 2007, 03:39:54 PM »
Mark I was one of those who suffered for almost two years with severe Sustiva side effects. I convinced myself that the "good" numbers justified my misery and tried to gut it out. One day I told my doctor, "either switch my meds or else!" I guess the tone of my voice and the look in my eye convinced him...we switched to Kaletra that very day. It might be time for you to have a serious talk with the doc.

I am convinced that for some of us Sustiva is just too potent to tolerate and I hear stories like yours over and over again.

« Last Edit: June 15, 2007, 11:48:43 PM by Dachshund »

Offline antibody

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Re: Mental health and sustiva
« Reply #6 on: June 15, 2007, 05:36:11 PM »
i had to drop sustiva because of the depression and sleep problems.
Timbuk      <50/ 794  CD4 10/06 
                 <50/ 1096 CD4 3/07
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Started Atripla  7/14/06
Switched to boosted Reyataz Truvada 3/28/07

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Offline ademas

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Re: Mental health and sustiva
« Reply #7 on: June 15, 2007, 08:59:06 PM »
The vivid dreams, sometimes nightmares, fatigue, and depression have definitely been a big part of my experience with Sustiva (6-7 years now?  I can't remember...but it's been a long time).
I still prefer it to the PI's, and my numbers have certainly improved on it.
Seems there's always something, though, eh?

Offline leatherman

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Re: Mental health and sustiva
« Reply #8 on: June 15, 2007, 11:45:54 PM »
I quit Sustiva after almost a year for the opposite reason. I was sleeping away my life - even when I was awake! Each night came vivid nightmares of zombies (obviously my subconscious struggling with the concept of my infection). Each day I stumbled about my house, banging into walls liken a drunk, barely awake. Four months onto the drug I had to quit my job - I was afraid I'd kill myself trying to drive into work due to these side effects. Finally, when I fell down the stairs one morning leaving my bedroom, still under the Sustiva effects after sleeping for over 14 hrs, I called it quits. My doc still occassionally tries to recommend again; but my reaction to all the meds has been to take quality of life over quantity. If the drugs are going to make me puking sick every day, I rather not take them regardless of even the most dire consequence. If the med is going to keep me too disorientated to even safely walk within my own home, much less trying to go outside anywhere, then I'll suffer the consequences of NOT taking the meds.

Luckily, my doctor worked with me through several other combinations of meds (a very hard two years of various side effects) until we got something that not only doesn't make me puke every day; but lets me stay awake through life without those horrible nightmares.

I give you guys major props for living through those side effects for so many years; but I just couldn't accept living like that with Sustiva.
leatherman (aka mIkIE)

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We're gonna burn this disco down before the morning comes
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Offline simon2

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Re: Mental health and sustiva
« Reply #9 on: June 20, 2007, 03:32:51 PM »
I have just done exactly what one of you guys wrote he did: told my doctor "Take me off Sustiva! Now!"
I had been on it for two years and felt it was driving me mad....anxiousness, depression, disorientation, dreams, etc. I actually didn't know myself.
I was taken off immediately upon request and felt better from that day...am now on Reyataz for the last four weeks...no ill-effects so far.
Shouldn't we be discussing the quality of life we can expect to have on these drugs?
So many have written in anti-Sustiva....shouldn't the side-effects be a little more spoken about? Why did it take me two years to say I could not take it anymore?
Would love to hear others' experiences.
I think the moral is: if it doesn't feel right, speak out!
Love to everyone,

Offline justapozdallasguy

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Re: Mental health and sustiva
« Reply #10 on: June 20, 2007, 09:41:14 PM »
I was on Atripla. As for the Sustiva component:
I could never beat the NIGHTMARES and anxiety not to mention the exhaustion of not sleeping well. I also had diarrhea. I had to change to Truvada and Viramune. Now I am rested, no "vivid nightmares" and praise Jesus NO DIARRHEA. I tried to wait for the side effects to go away with Atripla/sustiva for over 8 months. Good luck

Offline Tempeboy

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Re: Mental health and sustiva
« Reply #11 on: June 25, 2007, 02:20:41 AM »
I have a friend who has just come through an 8 week haze on Efavirenz.  Here in Oz we call it Stocrin.

Owing to missed doses secondary to side effects, he has become resistance to this entire class of drugs.

I was able to find this for him.



who dosn't understand why people need to suffer  >:( >:( >:( >:( >:(
Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

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Offline Dragonette

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Re: Mental health and sustiva
« Reply #12 on: June 25, 2007, 01:08:23 PM »
I switched and am feeling better. still anxious and still somewhat crazy (always was), but back within the norm for me. it really made a difference. It's not all flowers and light now but I feel way more comfortable. that was my experience and I really debated switching for a while b/c sustiva worked and I was not sure what was me and what was the drug.
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline MOONLIGHT1114

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Re: Mental health and sustiva
« Reply #13 on: June 26, 2007, 12:45:58 AM »
Hi Aztecan,

It seems most replies except for mine and one other are all from guys.  I am a 37 yo female, have been on Sustiva and Truvada since October 2005, been pos since 1993.  I was warned that I would have crazy vivid dreams and I have not had one!  Yes, two hours after I take the Sustiva I feel like I'm walking on a boat, but this is close to bedtime, just for that very reason.  I have noticed anxiety, and I thought that was just me.  I have had to pull over as well for fear of driving off the road, or at least slow down to make myself feel better.  Its nice to know that I'm not as crazy as I thought, that the anxiety is from the meds.  I wanted to offer a female's feedback, I wonder if that is the difference in symptoms we experience?  Thanks for your post, we are all in the same boat (the Sustiva one, that I am trying to stand up on!).  :o
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline LittlePill

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Re: Mental health and sustiva
« Reply #14 on: June 26, 2007, 10:58:42 AM »
Aztecan, I'm on Atripla, which contains Sustiva. I have only been on it for about a week now. I know what you mean when you say you are sleeping and not knowing your sleeping. This happened to me the first couple of nights. I never really had the dreams. The past two nights I have started taking a low dose of Ativan, and while it makes me sleep more comfortably, I still feel really fatigued during the day.

Does anyone have any positive reports about Atripla/sustiva and these side effects going away?

Offline AlanBama

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Re: Mental health and sustiva
« Reply #15 on: June 26, 2007, 09:50:24 PM »
Hi Mark

I just wondered how you are doing now, and if your sleeping difficulties had gotten any better.

I understand sleep issues, especially the "being asleep but feeling as if you are awake"...you get up the next day, and it is as if you never went to bed.

Hope you get some relief from this soon!

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline aztecan

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Re: Mental health and sustiva
« Reply #16 on: June 27, 2007, 12:23:08 AM »
Hey Alan,

Yes, it took about seven weeks, but things are better. I still have the dreams, but I am somewhat more rested than before.

I now sleep about nine hours a night, which is a real departure from my first half-century. But at least I now get up feeling better and, after 10 or 12 cups of coffee, I feel about normal.

I am still troubled by getting drowsy when driving more than an hour at a time. I hope it passes but, in the meantime, I make it a point to stop regularly.

I don't feel drunk anymore, even if I don't go to bed after taking it. Food doesn't seem to make too much difference any more either, so maybe that is a good sign.

I don't have the anxious feelings as much either. They seem to have mellowed out quite a bit.

Anyway, things have improved and I am feeling more like my old mischievous self again.  ;)

Thanks for asking, hon.


« Last Edit: June 27, 2007, 12:25:20 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline NYCguy

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Re: Mental health and sustiva
« Reply #17 on: July 08, 2007, 03:59:03 PM »
well I only took sustiva for 1 month as a prophylactic  (ok, it didn't work!) but it was the worst month of my life.  I have a tendency toward anxiety - add to that not knowing if I was poz plus sustiva's craziness and you get the idea.  I became so anxious that I was afraid I was going to throw myself in front of the train on my way to work.  the first night I woke up with my head buzzing and spinning so loudly I thought I was dying.  The dizziness did die down somewhat, but the anxiety never did.  Of course it's possible that it would have gotten better after more time, but it turned out I'm resistant to that class anyway.

I'm saying all this just to point out that my current regimen (norvir/truvada/reyataz) has virtually no side effects for me and is working, so unless major resistance is a problem and there are no other options, if a drug is making life hell, why not try switching to something that you can live your life with rather than trying to 'tough it out'?

By the way, I'm really glad things are getting better for you and sounds like staying on sustiva might be your best course for now - above comments aimed at those who are not improving.
Good luck!
« Last Edit: July 08, 2007, 04:01:51 PM by NYCguy »
11/9/06 = #$%^&!
sometime early Dec 2006:
CD4 530 20%/VL >250,000 (&*$$%!!)
started Reyataz300mg/Norvir/Truvada 12-27-06.
1/30/07 CD4 540 30%/VL <400
4/07 CD4 600+ 33%/VL <50
6/9/07 CD4 720 37%/VL <50
10/15/07 CD4 891 (!) %? VL <50
1/2010 CD4 599 (37%) VL<50 (drop due to acute HCV)
9/2010 - looks like HCV is gone for good! And I'm finally drinking again, thank GOD
2013 - considering a switch to Stribild. but I love my Kidneys (but I hate farting all the time!)...
June 2013 - switched to Stribild.  so far so good...

Offline Peter B

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Re: Mental health and sustiva
« Reply #18 on: July 09, 2007, 02:51:23 AM »
Hi Mark,
I've been on Sustiva for 8 years non stop now... and I still get the anxiety, like something really major is about to happen but I can't remember what it is, i start thinkng I have forgotten something really important but eventually realize its nothing and must just be the Sustiva. I don't work anymore and I put that down more to Sustiva than hiv, my concentration is shot, I am extremely bad tempered and have serious bouts of rage over the smallest things (I used to be so patient and never lost my temper over anything!).  I have depression as well and really battle to get going in the mornings, takes me hours to feel awake and have enough energy to get out and do something. I can't remember the last time I went to sleep before 2am in the morning.... Unfortunately I don't wake up and find my dishes done, sometimes theres a few more tho and crumbs everywhere and the peanut butter left out so I know I have been up making toast at night but i don't remember it !!!  As I don't have to work anymore I just live with all the side effects as my blood tests have always been really good, Undetectable for 8 years and cd4 climnbed slowly from 118 to 1000 now.

Offline aztecan

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Re: Mental health and sustiva
« Reply #19 on: July 15, 2007, 09:57:27 PM »
Thanks all.

This is such a weird drug. There are days when it is almost OK. But the rest of the time, ugh!

Two weeks ago, it seemed pretty good. Not too many problems.

Last week, I could barely function. I couldn't remember days, appointments, you name it.

The past few days, I have felt better, but have had recurring attacks of anxiety. Yesterday, I kept busy, but slept about 13 hours total.

Today, I spent much of the day in the emergency room with someone who took ill. I still slept about 12 or 13 hours and I have feelings of dread washing over me.

I want to run away, but there is no place to run to. It wouldn't help anyway, because I can't outrun myself.

I must get off this drug soon.


"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Peter6836

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Re: Mental health and sustiva
« Reply #20 on: July 16, 2007, 08:52:05 AM »
I do not know if anyone ever gets back to normal with this drug. I notice certain mental health problems with sustiva. Although I am already plagued with mental health problems due to bi polar disorder. I was pretty stable until I went on sustiva. Now I am all over the board again. Anxiety, depression, wild dreams sleepless nights and fatigue all at the same time. It is difficult. I understand the forgetfullness and the brain freezes. I for one am just struggling through. I keep going and try to keep a good attitude. I attempt to be kind and forgiving to myself. I enjoy those wonderful lucid moments. I love life, although the difficulties with the medications remind me of my mortality compounding the mental health issues.
Stay close to those that love you. Love yourself, and just stay grounded. Concentrate on your spirit not your cognitive abilities.

Offline JDP3

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Re: Mental health and sustiva
« Reply #21 on: July 18, 2007, 10:25:21 AM »
I've been on Sustiva for about 3 years now.  This morning has just about put me over the edge.  I've handled the mood swings well enough, I think, up to this point.  I was sent home from work after getting into an argument with my employer.  This is so unlike me.  I'm tired most of the time lately.  The physical aspect of my job seems to take more and more out of me each time.  I took two days off work last week along with the weekend and barely got out of bed.  The sleep disorder is back, being unable to sleep for more than a couple of hours unless I double up on the Clonazepam.  My doc upped the Zoloft from 50mg to 100mg because of anxiety.  I'm frightened that I'm feeling the first signs of neuropathy in my feet.  I've been on Zerit and Videx (ddI) for a little longer than three years.  These meds have been known to cause pancreatitis, potentially fatal lactic acidosis, and of course the neuropathy and lipoatrophy.  I can see the veins in my legs and arms now more so than in the past year.  My numbers are acceptable with a VL under 400 and CD4 of 387, but I've reached a point where I don't know if I can handle my job any longer, that is, if I even have a job now.  I've always worked.  I just don't know what to do at this point.  I'd welcome any advice.

"There is no beginning.  There is no end.  There is only the infinite passion of life."   -Frederico Fellini

Offline JamieD

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Re: Mental health and sustiva
« Reply #22 on: July 19, 2007, 05:35:58 PM »
Original Poster, Azetcan:

That sounds aweful. I am really sorry that you have these side effects. I have some of these symptoms without any medication, so I can't imagine being able to get rid of them by simply stopping taking a medication and still taking it none the less. I know what the anxiety and sense of impending doom feel like. I have no advice as I barely cope myself, but I hope things get even better then they are now for you.

Offline bahati

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Re: Mental health and sustiva
« Reply #23 on: July 21, 2007, 10:37:50 AM »
Peter B,

I was made to understand that with undetectable viral load and your CD count, you could comfortably stop taking drugs and concentrate on healthy living (diet, exercising, resting, meditation or praying, hydrotherapy, massage etc)

Offline Ann

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Re: Mental health and sustiva
« Reply #24 on: July 21, 2007, 11:43:38 AM »

You understood wrong. Each individual is different and to make a blanket statement that it is OK to stop the drugs with a good CD4 count and undetectable VL is simply WRONG.

While I'm at it, I deleted the post you made in the HIV Test thread. If you want to remain a member here, you will not advocate any more movies or materials that promote a denialist stance. Doing so is against our Terms of Membership which you agreed to when you became a member. This information is also contained within the Welcome Thread, which you should have read by now. So really, you have no excuse.

Please consider yourself warned on this matter of denialists.

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline RICKY77531

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Re: Mental health and sustiva
« Reply #25 on: July 22, 2007, 08:29:28 PM »
I have been on sustiva and truvada since Beginning of July this year..the first week was hell....sleep for about two hours then wake up and feel as though I haven't slept...also very anxious.....dreams were there too...but about the third week now and just have the dreams..sometimes....I don't eat two hours before I take them...wanted to give a try and whoa....never again...severe tossing and turning....dizziness...sideffects were like to the 10th degree. Can't wait to see my numbers sept. of this year to see how it kicked butt!!!!
06/2007   CD4 266  Vl 62000
06/2007   CD4 200  Vl 13495
07/2007   ATRIPLA
09/2007   CD4 323  VL Undetectable
11/2007   CD4 428  VL Undetectable
01/2008   CD4 357  VL Undetectable
04/2008   CD4 357  VL UNDETECTABLE
08/2008   CD4 402  VL UNDETECTABLE
11/2008   CD4 421  79 DETECTABLE..
2/2009     CD4 450  VL UNDETECTABLE

Offline dufusmaximus

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Re: Mental health and sustiva
« Reply #26 on: August 05, 2007, 02:15:57 PM »
Just started treatment with Atripla.  Only had one weird, trippy (very much like LSD if you guys have every tried) day, at work!  I just tried to stay at my desk and freak out to myself - last about 2 hours.  Not sure what happened, I take my meds in the evening before bed.  I now, just get dizzy once in a while,  about 30 minutes after taking the drugs. 

I am also on paxil (10mg) and take trazadone to get drowsy.  For anxiety attacks (which I had before taking atripla) I take ativan.  If I can't fall asleep at night, I take BOTH trazadone and ativan.  Check with your doctor on what you should take, don't become your own pharmacist.

I will stay on atripla for as long as i can, i hope that the side effects don't increase

i am working now, doing general office work, but my background is IT...but there is NO WAY i could do my old career with the fuzzy brain i have now...i have to write everything down, and if i take too much ativan, i get big blocks of memory erased...i actually had a job interview and about a week later i thought that i had not gone and called to apologize that i had missed the appointment, only to have the poor guy on the other end of the phone explain how we had met at , for a lunch meeting...I HAD TOTALLY ERASED IT...yeah, that makes me a good candidate for mission critical work...:(

anyway, enough whining, who has taken atripla or the same components of atripla for a very long time (5 years? 10 years?)?  are you mentally alert? functional?

have any of you changed jobs to compensate for failing mental capacity? 

Offline Steinway

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Re: Mental health and sustiva
« Reply #27 on: August 10, 2007, 02:04:38 AM »
   I think it's interesting to read what each persons experience with Sustiva has been.  For me it's a strange feeling.   I took some a little bit ago as I had decided to go to bed but got on here to do some searches. Got distracted and here I am.  I guess in a nutshell I will share that my experience on Sustiva leaves me feeling sort of melted at times.  Just now typing this in I felt as if the keyboard melted back and fort like a modern painting.  I had also taken a half of pill of ambien.  I can't sleep without ambien, but I do try to use small doses when I can.  I find vision is odd on Sustiva.  It's a blur of sorts.  The feeling like my eyes have to catch up to what my site truly sees.  Eventually it all levels off.  During the day there is only a rare occasoin that I feel tired or worn out from the drug.  I feel great most of the time.
    Off the cuff I'm looking for a local discussion group for people dealing with HIV/Aids.  I'm in Battle Creek for the rest of the year and work closer to Marshall Michigan.  I would love to meet a couple of poeple from around here to chat or to geg information on other groups that are similar in the central michigan south end ....
It is with passion, courage of conviction, and strong sense of self that we take our next steps into the world. Remembering that first impressions are not always correct. You must always have faith in people, and most importantly, you must always have faith in yourself.
~E. Woods


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