POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: Delby on February 04, 2013, 07:26:41 am
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Hi All,
I've now been on Atripla for some time and i'm coming up to the end of my 6th year on it. I take it at 7am the morning and i find the first few hrs (probably till midday) hard as the effects can include dizziness, hot flushes, inability to concentrate and difficulty communicating as well. Some days are much worse than others, but i just battle through it and carry on working. It doesn't stop me from going to work etc.
However, recently i have had music in my head 24/7. Even when i wake at night to go to the toilet it's there. First thing in the morning - it's there. Everyone gets jingles and music stuck in the head one time or another, but i've had this non stop for 5 months since October. It can be terribly annoying and difficult to live with. It prevents me from being able to read properly as it's there all the time. I have to sometimes read the same paragraph over and over and sometimes just give up. It's a noise 24/7 in my head.
I was thinking of asking my ID to refer me to a neurologist for a check to see if there are any signs of cognitive dysfunction. What do you think? Does anyone suffer from any of the above?
Delby :-\
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Delby, why do you take it in the morning when the recommendation is that Atripla should be taken before bed so you can sleep through the worst of the side-effects, such as the dizziness you experience? While some people can tolerate taking it in the morning and have no side-effects, they are few and far between.
Also, are you aware that eating two hours either side of taking it can increase the side effects? If you're eating breakfast before or within two hours or so of taking it, that may be the problem.
If for some reason taking it at night is even worse for you side-effect wise, then there's no reason why you can't ask your doctor to switch your combo. There are plenty of other combos out there that won't mess with your head the way the Sustiva in Atripla can.
If I were you, I'd switch my combo before worrying about neurologists and cognitive problems. It's more likely than not the Sustiva messing with you. Not everyone can tolerate the psych side-effects of Sustiva and there's no shame in admitting you may be one of them. There are too many other combos out there for you to suffer with Sustiva.
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Delby, why do you take it in the morning when the recommendation is that Atripla should be taken before bed so you can sleep through the worst of the side-effects, such as the dizziness you experience? While some people can tolerate taking it in the morning and have no side-effects, they are few and far between.
Also, are you aware that eating two hours either side of taking it can increase the side effects? If you're eating breakfast before or within two hours or so of taking it, that may be the problem.
If for some reason taking it at night is even worse for you side-effect wise, then there's no reason why you can't ask your doctor to switch your combo. There are plenty of other combos out there that won't mess with your head the way the Sustiva in Atripla can.
If I were you, I'd switch my combo before worrying about neurologists and cognitive problems. It's more likely than not the Sustiva messing with you. Not everyone can tolerate the psych side-effects of Sustiva and there's no shame in admitting you may be one of them. There are too many other combos out there for you to suffer with Sustiva.
Hi Ann,
I take it in the morning because I suffer from severe Insomnia. I'm talking 3-5hrs a night EVERY night. Most days i'm whacked and extremely fatigued. Taking it in the morning doesn't help my insomnia, but when i used to take it at night, my sleep was even worse. I'm not sure whether i have residual anxiety or in fact the Atripla is affecting my sleep quality, even by taking it in the morning.
I also don't anything until 2 hrs after. But i still get the sides. As i say some days are worse than others. But they are difficult to deal with especially as i work full time. It can be difficult in public as well, as your head is all over the place.
The reason i've not switched is because i didn't want to rock the boat. Plus the other option given to me, complera, needs to be taken with a 500 calorie + meal each morning. I don't want to have to calculate how many calories i'm eating every single time i take it. Also, what happens when i'm sick with a vomiting bug for example. The last thing you'd want to do is have a huge meal. So how would it work in those cases? So that's why i've never made the move over....
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Delby, you have every right to ask for a combo switch that doesn't include Complera. For example, I'm also in the UK. I requested, and was given, Prezista, Norvir and Truvada as my combo. It's easy to take, once a day, four pills in one gulp.
The only caveat is that Prezista needs stomach acids in order to be fully absorbed, but unlike Complera, that can be just a light snack like a piece of toast, a banana or whatever floats your boat. I take mine in the afternoon when I have a bite to eat - and sometimes that's only just a light snack.
I've gone from CD4s in the 300/400s, VL in the 30,000s, to CD4s of 1050, VL UD in six months. It's good stuff and virtually side-effect free. It's one of the most easily tolerated combos available today. Some people won't consider it because it's more than one pill (big deal, I say), but it's still only once a day. I really don't get all the excitement of having to take only one pill - it takes the same amount of time to stop and swallow whether it's one pill or three or four.
And speaking of boats, look at it this way. Atripla is already rocking YOUR boat, and you don't have to stand for it. By all means rock your doctor's boat and get him or her to switch you to something that allows you a better quality of life.
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Delby, you have every right to ask for a combo switch that doesn't include Complera. For example, I'm also in the UK. I requested, and was given, Prezista, Norvir and Truvada as my combo. It's easy to take, once a day, four pills in one gulp.
The only caveat is that Prezista needs stomach acids in order to be fully absorbed, but unlike Complera, that can be just a light snack like a piece of toast, a banana or whatever floats your boat. I take mine in the afternoon when I have a bite to eat - and sometimes that's only just a light snack.
I've gone from CD4s in the 300/400s, VL in the 30,000s, to CD4s of 1050, VL UD in six months. It's good stuff and virtually side-effect free. It's one of the most easily tolerated combos available today. Some people won't consider it because it's more than one pill (big deal, I say), but it's still only once a day. I really don't get all the excitement of having to take only one pill - it takes the same amount of time to stop and swallow whether it's one pill or three or four.
And speaking of boats, look at it this way. Atripla is already rocking YOUR boat, and you don't have to stand for it. By all means rock your doctor's boat and get him or her to switch you to something that allows you a better quality of life.
Thanks Ann. I'm due to meet him in a few months so i'll have the discussion with him. I think it may be time for a change as this music in my head is driving me literally mad! Not to mention the sides i experience most days until midday. I feel like my brain has been turned to mush!! Thanks for reaching out.
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You're most welcome, Delby. That's what we're here for. :)
You might want to consider getting an appointment sooner rather than waiting a few more months. This seems to be impacting on your life in a very negative way - and it just does NOT have to be that way.
And don't take no for an answer from your doc. YOU have to live with this, not the doc and you have every right to participate in your care by telling him or her what combo you want to try...
Within reason of course. A good doctor won't let a patient insist on a suboptimal combo. The combo I suggested to you is an excellent one. In fact, my doctor knew I would refuse Sustiva, but he told me he was very pleased with the combo I chose because it is so very effective and easily tolerated.
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Delby -- I'd definitely consider switching meds. I was considering Atripla but it turned out that 1) I was resistant to it and 2) I have a heck of a time with insomnia myself and the doc didn't want to make it worse. I'm on Reyataz/Truvada/Norvir and it seems to do the trick.
PS -- 500 calories is not a big meal. Most men need around 2,000 calories a day.
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I have the same problem as you with Atripla as well but not insomnia. My head was constantly in a state of blur, unable to think or concentrate. Switch from Atripla to NVP+Truvada fix everything in 3 days. Hope you can fix your soon.
I think the other culprit is your insomnia, who know how long term insomnia can effect you.
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I'm on Reyataz/Truvada/Norvir and it seems to do the trick.
That's also an excellent combo and well tolerated by most. That was my original choice, but I went with Prezista rather than Reyataz because Prezista doesn't cause a possible increase in bilirubin, unlike Reyataz. Increased bilirubin levels associated with Reyataz aren't harmful, but it can make the whites of your eyes yellow. I wanted to avoid that. Call me vain. ~shrug~
By the way, a member who used to post here always called Reyataz razamataz. I always kinda liked that. :)
Switch from Atripla to NVP+Truvada fix everything in 3 days. Hope you can fix your soon.
I'm not a big fan of switching from Sustiva (found in Atripla) to NVP (aka nevirapine, aka Viramune) because they're in the same class (NNRTIs) of meds. My partner was switched from Sustiva to Intelence (also an NNRTI) due to sleep issues and it hasn't made much of a difference. It's just my personal opinion, but it seems to me that if you're having problems with Sustiva, it's better to go for a different class of meds completely.
Please also be aware that it can take longer than three days for the side-effects from Sustiva to completely resolve. It can take as long as a week, sometimes longer. So, if you don't see an immediate improvement after switching, give it time and don't despair.
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I know, old topic but I remembered reading this and thought "music in your head 24/7"? Wow!
Starting about 3 or 4 weeks ago I started hearing music in my head. Not 24/7 but off and on EVERY day.
At first I thought it was the electric fan. It is kind of a backround sounding thing like an ethereal choir. Just a short refrain. Over and over. Sometimes I can slightly manipulate the tune in my head if I "push it" but cannot shut it off. Frustrating and very very weird.
I've had insomnia issues with my change TO Isentress FROM Atripla. (in other words, no sleep issues on Atripla) I have been on Lunesta for about 2 months which has done wonders for the insomnia so that doesn't seem to be the issue.
I googled this whole thing and found out shit it happens. Rare but pretty well documented. (not in connection with HIV or meds) Most often in elderly people or those who are more isolated. It doesn't seem to be connected with any psychological problems (whew!) but also doesn't seem the medical profession has a solution.
All I can say is that I hope this will go away soon and I'm glad the tune in my head is not "You light up my life."
Delby,
My thoughts are with you. (hopefully not my music along with it! :P.)
edited to add: I will try to provide the link. (not tonight)
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Wow Mitch ... I have a constant hiss in my ears that makes it hard for me to hear in certain situations and sometime I mistakenly think I head a voice .
Music is good I suppose as long as you don't dance to it or do the worm in the grocery store to the music in your head .
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All I can say is that I hope this will go away soon and I'm glad the tune in my head is not "You light up my life."
Oh thanks a bunch, Mitch. Now I've got that song in my head. ::) ;D
I started getting a ringing in my ears about a week or so after starting meds - and my doc admitted that most of the meds have the possibility of being somewhat ototoxic (http://en.wikipedia.org/wiki/Ototoxicity). A lot of drugs have this possible side-effect, not only hiv meds.
I'm not completely sure if it's gotten better, or if I've just become accustomed to it. It seemed pretty intense at first, but now I mainly notice it when I'm going to sleep or when the house is quiet. It doesn't really bother me now, unless I focus on it. It's like when you get a song in your head (ahem) - the more you concentrate on it, the more difficult it is to make it go away.
you light up my life, la la la la, la, laaaaaaa......
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Music is good I suppose as long as you don't dance to it or do the worm in the grocery store to the music in your head .
Now you tell me. ::) I couldn't understand why the other shoppers weren't getting in the groove.
Oh thanks a bunch, Mitch. Now I've got that song in my head. ::) ;D
you light up my life, la la la la, la, laaaaaaa......
I'm sorry. ;D
Here is an interesting link about musical hallucinations.
The comments range from interesting to funny to frightening.
Also click on the link for the article from the Sunday Telegraph.
http://bps-research-digest.blogspot.com/2008/04/hearing-music-that-isnt-there.html
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okie dokie , I think the mystery with the music is solved!
have been having a lot of sleep issues since switching from Lunesta to Trazodone 6 days ago. was searching online L vs. T and discovered that Lunesta has the potential side affect of "auditory hallucinations"! :o
The music started to subside in frequency and volume the day after the switch. I didn't make the connection until this morning after my search.
tonight insomnia is bad after taking 100mg of traz at 11pm. (3rd night on this dose) worked last night. ??? at least Lunesta was reliable.
I will still give it a shot for 2 weeks but if things don't improve I would much rather listen to the hallucination than not sleep.
night night. (fingers crossed)