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Anonymous
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Light sleeping / no sleeping / endless dreaming
      #115971 - 11/23/04 07:56 AM

I'm on EFV, 3TC, & TDF (Efavirenz, Lamivudine, & Tenofovir). All taken at the same time, just before bed.

I either sleep so lightly that any movement or sound from my partner wakes me up; or I lie there for two to four hours not sleeping at all; or I dream all night and wake up mentally exhausted and anxious because of the dramatic content of the dreams!

In each situation I find myself thinking pretty negatively. The other morning I heard myself mutter, "I'ld be better off dead!" That scared me. I am beginning to detect a bit of personality change: I have always been so joyous and positive about living.

ANY solutions, anybody?

I haven't tried any sleeping tablets, herbal teas, warm milk, or anything yet.

Maybe I should tire myself out during the day with physical work?

I think my doctor would change my combination or the times of taking my drugs if I pressed him. However, I am wary of hitting my body with another drug or two.

All sincere suggestions gratefully received.

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Jessie
Guardian

Reged: 06/15/04
Posts: 395
Re: Light sleeping / no sleeping / endless dreaming new
      #115977 - 11/23/04 01:21 PM

Hi,
Although I am not on any medications yet myself for the hiv, I too have lots of difficulty sleeping, thoughts of suicide while I am sleeping and have even talked aloud in my sleep to where my husband has told me of the things I say when I too do finally fall asleep...I know how emotionally AND physically draining this can be...I dont have the solutions unfortunately but I wish I did cause then I would be able to help you and me...The only advise I can think of is to talk to your doctor and see if you maybe can take something that will help you enter a more steady sleep/more sound...maybe a light sedative to relax you or a mild sleeping pill...I try to drink decaf tea with alittle honey-no milk before going to bed...sometimes it helps a bit and sometimes not...I hope you do find a solution though and if you should stumble upon the answer...please let me know!!!! Good luck...~Jessie~

HIV+ since 2-3-04
"While there is breath, there is hope"

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Broken_Angel1
Guru

Reged: 02/26/04
Posts: 272
Loc: Arizona
Re: Light sleeping / no sleeping / endless dreaming new
      #115992 - 11/23/04 05:02 PM

Talk to your doctor about maybe taking your meds earlier in the evening. Try warm milk, bananas, chamomile. Talk to a nutritionist or ask your doctor if he has any natural alternatives for sleeping paper. Finally, I have tryed Ambien. Only enough to last a week...to get me on some kind of a regular sleep schedule. It does work...and if it doesn't you get one week of good sleep. hahaha.

Good Luck.

--------------------
"No act of kindness,
no matter how small,
is ever wasted." AESOP


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BrokenWingedBird
Expert

Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Re: Light sleeping / no sleeping / endless dreaming new
      #118621 - 11/30/04 06:29 AM

Thanks for the two helpful replies to my posting, above, as "Anonymous". (These Bulletin Boards are so helpful, I have just registered now as BrokenWingedBird.)

I asked Dr. Henry if the insomnia might be linked to my daily supplement of minerals and vitamins. He thinks not. But it is strange how during the last week, since I stopped taking my daily tablet of minerals and vitamins, my sleep has improved immensely. However, I know it may just be a coincidence. My dreams have been constant for the 7 seven months of taking Efavirenz so maybe, at long last, my brain has adjusted. I hope so. The last really bad night I had was after a social evening when I was offered prawn crisps (maybe known as "prawn chips" in some countries). The next morning I looked at the packet: of course, they had been deep-fried and the packet said they were 30% fat! Fat, I have learnt, increases the presence of Efavirenz in the blood by up to 60%! So, no crisps for me this Christmas!

Here's Dr. Henry's advice to me:

<<I am not aware of a drug interaction between efavirenz and the vitamins you are taking. I assume you have tried taking the efavirenz in the AM? Judicious intermittent use of sedatives such as trazadone, Ambien, Sonota or even lorazepam has been very helpful for some of my patients who have persistent efavirenz related sleep probelms. I have also switched some patients from efavirenz to an alternative drug (nevirapine as a NNRTI or a PI is a common strategy)with reasonable success. KH>>


--------------------
Without a dream, life is a broken-winged bird that cannot fly. Keep hold of your dreams.

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BrokenWingedBird
Expert

Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Re: Light sleeping / no sleeping / endless dreaming new
      #118622 - 11/30/04 06:35 AM

Thanks, Jessie. Yes, sticking to decaf tea and/or coffee (after 2pm, for me!) is vital. Also just cutting out all liquids in the evening is helping too - since I have to down a glass of water to wash my daily pills down just before hopping into bed each night. That glass is enough! It means I only wake to pee ONCE a night, instead of five or six times, like I used to when I started on treatment 7 months ago. I am finding that since my sleep is shallow, cutting out ALL stimuli to wake during the night helps enormously. Thankfully, I live in the country now. If I lived above the busy street I used to live above a year ago, things would not be so good.

--------------------
Without a dream, life is a broken-winged bird that cannot fly. Keep hold of your dreams.

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Jessie
Guardian

Reged: 06/15/04
Posts: 395
Re: Light sleeping / no sleeping / endless dreaming new
      #118630 - 11/30/04 01:47 PM

your so very welcome and I hope that you continue to have such good success with your sleeping...By the way, thanks for sharing what your doc had said...was informative for me and also I wanted to tell you that I LOVE the quote that you put at the bottom of the screen...what a BEAUTIFUL saying!!!! More people should think like you and I think there would be alot more happy people around...God bless my friend and stay well....~Jessie~

HIV+ since 2-3-04
"While there is breath, there is hope".

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Anonymous
Unregistered

Re: Light sleeping / no sleeping / endless dreaming new
      #119014 - 12/03/04 12:06 AM

Hi,

As you can see I can't sleep. I am not on meds yet thank god because I can't tell you I know how you feel, well I kind of do because I can't sleep even so. Have you talked to your specialist to see if he/she can advise you what may have worked for other patients maybe having the same problem?

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Jessie
Guardian

Reged: 06/15/04
Posts: 395
Re: Light sleeping / no sleeping / endless dreaming new
      #120043 - 12/06/04 09:54 AM

Your very welcome Broken and I am sorry I could not be more help to you...Like I said, if you can come up with some magic to help the sleeping situation...PLEASE let me know...no meds and cant sleep here in New York...think it is a little extra anxiety or something like it...maybe panic attacks when I get into bed knowing that it wil be difficult to sleep...who knows...anyway, I love your user name and I like your quote too!!! I used it in one of my latest posts...hope you dont mind??????? Be well and hang in there..hopefully things will get easier for all who have trouble with sleeping and trust me there are many...God Bless....~Jessie~

HIV+ since 2-3-04
"While there is breath, there is hope".

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BrokenWingedBird
Expert

Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Re: Light sleeping / no sleeping / endless dreaming new
      #130982 - 12/23/04 09:37 AM

Hi, Jessie.

Glad you like that quote. I found it years ago on a poster and it has guided me all my life. Since becoming HIV four years ago, my dreams have had to change. Some of the things I strove for before just aren't possible anymore - largely because they would cause stress that NOW isn't good for my already-compromised system. So I have had to alter my dreams. I have fewer dreams than before, but I know I MUST still hold on to some. Actually I've changed my dreams, created variations of the old ones, made new dreams that will sit comfortably with taking meds and keeping my stress levels low, etc.

Anyway, as for the problem of not sleeping. I saw my HIV doctor a couple of weeks ago. He says my side-effect of sleep difficulties is "classical". He is measuring the level of Efavirenz in my blood, with a view to changing me to Navirapene (spelling?) if the level is too high. He offered to change me there and then. I said I didn't want to hit my body with another drug. He said it wouldn't matter. If I stopped the Efavirenz while it was still effective in controlling the virus, then it will be effective still if I ever have to go back on it at some point in the future. I have got somewhat used to the "idea" and the occurrence of the vivid dreams that Efavirenz causes: Navirapene's possible side-effect is nerve problems at the end of the extremities. I don't want to have to go through adapting to that (should it happen). So I am persisting.

But something seems to be improving. I haven't been prescribed any sedatives to help me sleep, but a friend from the US visited recently and he had some sleeping tablets on him, to help with jet-lag. I BEGGED him to leave a couple with me, and he did! I took these two nights in a row: had two good night's sleep, AND they seem (fingers crossed) to have had an effect on my brain's behaviour. Since those two nights I haven't been waking up more than once, and then only briefly. So maybe they alter the brain's behaviour a little. Maybe I SHOULD ask my doctor for a few sedatives, just as the Body expert suggested.

Have a peaceful, joyful, and stress-free holiday season. Here the temperature is expected to plummet on Christmas Eve and they're saying we might get snow - like in all those mythological Victorian Christmas cards!

x.

--------------------
Without a dream, life is a broken-winged bird that cannot fly. Keep hold of your dreams.

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Jessie
Guardian

Reged: 06/15/04
Posts: 395
Re: Light sleeping / no sleeping / endless dreaming new
      #132369 - 12/28/04 09:57 AM

Thanks for keeping me posted on your progress with your sleeping...I am soooooo glad to hear that you are sleeping better...I hope your holidays were good and Yes, maybe you should ask your doc for a light sedative to help when you need it...It cant hurt you and in the end will be better for you to get the sleep you need to keep your body in tip top shape!!!!

I know what you mean as well when you said you have had to change some of your dreams due to stress and stuff...I too am going through that process now and not having an easy time of it either....I just cant seem to accept the fact that this has happened to me and that there are so many others that are suffering as well...it hurts but at the same time I am confused cause I dont want to totally give up my dreams or hopes...I just dont know!!!! Really I dont!!!!!!

My hope for the New Year is that a cure will be found...I know that they get closer each day...I just wish that day would GET HERE!!!!! For all of us!!!!! Happy New Year my friend AND a HEALTHY one too! xo~Jessie~
p.s.SWEET DREAMS******************** =)

HIV+ since 2-3-04
"While there is breath, there is hope".
"HIV is what I have, not who I am".

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BrokenWingedBird
Expert

Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Re: Insomnia "water-table"/threshold re. fats. new
      #132617 - 01/06/05 06:35 AM

Hi Jessie.

Thanks for your words.

I haven't been to my doctor for sedatives. I thought everything was going well. For about two weeks I went straight to sleep, woke for only a couple of brief moments each night, and felt good enough in the morning. But just after New Year I had TWO almost completely sleepless nights. I know you know how hellish they can be. People can easily think that not sleeping is nothing compared to pain, but not sleeping for hours on end, just having to lie there and wait, combined with the depressive side-effects of Efavirenz, is very unpleasant. I find my mind considering all sorts of horrid thoughts. Anyway, I am back to sleeping "well enough" now, and it may help if I share what I have discovered - particularly since my doctor and my HIV dietician gave me no warning of the interaction of Efavirenz and fats.

I believe that having Efavirenz in your bloodstream is a bit like having an underground river running through you. The river is always running but if conditions are as good as possible there should be little sign of that river. What makes that "river" suddenly come rushing over the surface, causing night-long sleeplessness? Answer: the level of the "water-table" simply rises too high.

Before Christmas and New Year I got my fat-levels right down. My partner meticulously avoids cooking fatty foods. The skin is peeled off poultry. Particularly oily fish is avoided. Fried foods are completely "out". Even potato chips/crisps are "out" - because they are deep-fried. I did some research and found abstruse medical papers saying that people on Efavirenz must avoid "hydrogenated fats". (My HIV doctor and HIV nutritionist told me NOTHING of this when I began treatment.) Apparently "hydrogenated fats" are included in many processed foods - biscuits and cakes, among them. My blood results from mid-December 2004 show that my cholesterol count was down to 3 (the range is 0 to 25, I believe). So the avoidance of fat was working, and, as I say, I was sleeping pretty well.

Then along came Christmas and New Year and festivities, and food! I was really very very well-behaved. A couple of slices of Christmas pudding, a few mince pies . . . but it all adds up. Then on New Years Eve at the end of the meal, just an hour before I take my Efavirenz, three creamy gourmet cheeses appeared on the table and I had had a bit to drink and I failed to say "No!" - though my partner was making eyes at me, to try and get me to put the brakes on. Believe me, I didn't have much. But I believe I ate enough of that incredibly fat-rich cheese to just raise the "water-table", or the level of my "underground river", sufficiently for the wretched insomnia problem to manifest itself again, flowing through my night like a demon, till the effects wore off in the early hours and I finally got a couple of hours' sleep.

So the lesson I have learnt is that when confronted with some fatty food I cannot ask myself, "Did you sleep OK last night?" and if the answer is "Yes!" then take a bite. Instead, the question I have to ask myself is "You may have slept OK last night, but whereabouts is the level of your fats right now? Is it likely to be close to ground-level. If so, don't raise the level, or you will suffer!"

When you start treatment, Jessie, I think this will help.

Happy New Year!

Broken Winged Bird.

--------------------
Without a dream, life is a broken-winged bird that cannot fly. Keep hold of your dreams.

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BrokenWingedBird
Expert

Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Efavirenz: ways to reduce poor sleep quality. new
      #133974 - 02/03/05 04:15 PM

If Efavirenz (and Efavirenz along)is really wrecking your sleep quality, then the only solution is to stop taking Efavirenz (and substitute it with another drug).

However, there are ways to ensure your sleep is as good as possible.

Important discovery:
Some foods and drinks contain Tyramine. Tyramine causes the release of norepinephrine. Norepinephrine is a brain stimulant.

SO,

If, like me, you take all your Efavirenz just before bed (so that the dizziness/spinning and inability to concentrate occurs while you are hopefully sleeping), then from after lunch onwards avoid food and drink which contains Tyramine. In other words, for that day, consume no more of the following:

bacon,
cheese,
ham,
aubergines,
pepperoni,
raspberries,
avocado,
nuts,
soy sauce,
red wine.

If you get the munchies close to bedtime, eat something that triggers the hormone serotonin, which makes you sleepy. Carbohydrates such as bread or cereal will do the trick.

In addition:

Sniffing pure Lavendar Oil just before sleeping can help.

Tire yourself out during the day with some physical exercise.

If you have a lousy night's sleep, full of dreams and waking up, then get up early in the morning ANYWAY. Don't be tempted to sleep in. Chances are you will be so tired by night-time, that the next night you WILL sleep better.

Avoid all alchohol from early evening onwards. Alchohol is a diuretic which will fill your bladder through the night, and if you are sleeping lightly because of the Efavirenz then your bladder will wake you up.

If you can't sleep, then get up and do things, even if it is just going to another room and reading. Chances are you will find you get sleepy very soon and this triggers a wilfulness to sleep when you return to bed.

Avoid more than one cup of coffee, tea, coca cola, or hot chocolate per day, and have it in the morning. Efavirenz pushes the Central Nervous System into overdrive and Caffeine will only make things WORSE!

Avoid all fats as much as possible throughout the day. For example: have a minimum of cheese at lunchtime; take the skin off chicken; avoid roasted potatoes or chips (they soak up fat in the pan); and sausages and saveloys are full of fat. But most of all, read the small print on the wrappings of ALL processed foods and where you see the words "Hydrogenated Fat" then be very very wary. Hydrogenated Fats react with Efavirenz even much more badly than other fats do.

I have found out all the above the hard way, by way of eight months of misery (night after night of sleeplessness, leading to depression and negativity the next day).

And spread this message.

The leaflet that comes with Efavirenz (in the packet) warns that Efavirenz can cause "thoughts of suicide" ("Suicidal Ideation" the doctors call it) but there is NOTHING on the leaflet about how the above elements in food and drink can increase the insomniac side-effect of Efavirenz by up to an extra 60% or so - thus CAUSING you to lie awake night after night and thinking that you would be better off dead! I would have been saved all my nights of sleeplessness, if the above information had been included with the documentation.

Even some HIV specialists don't know the above information.

Only about 5% of patients on Efavirenz suffer really badly from sleeplessness, so that's probably why there isn't much help available anywhere.

As I say, spread the word.

--------------------
Without a dream, life is a broken-winged bird that cannot fly. Keep hold of your dreams.

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Jessie
Guardian

Reged: 06/15/04
Posts: 395
Re: reply to Broken wing-from Jessie =) new
      #134656 - 02/18/05 04:28 PM

Hey Broken,

Thanks for sharing...got info and defin...something I will print out and keep for future reference...Very Kind of you to think of me and others...saw your post on another site here BUT decided to write back to you here replying to your original post...You are very kind to think of me and I do appreciate it...just wanted you to know...Happy New Year to you as well and Happy sleeping too!!!!!!! I will remember to stay off the fats, fried and cheesy foods!!!!! TY again my friend...~Jessie~

HIV+ since 2-3-04
"While there is breath, there is hope".

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BrokenWingedBird
Expert

Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Re: Light sleeping / no sleeping / endless dreaming new
      #240320 - 06/29/08 03:58 PM

Just in case it helps anyone who has suffered, or who is suffering, from nightmares and depression due to Efavirenz, here's an update three and a half years down the line.

I can now say with complete confidence that I was certainly a one in a thousand who suffers mental disturbance from Efavirenz. Most importantly I can tell you with total sureness that it has taken three and a half years for my brain to return to something near normal. Note, however, that my brain still engages in excessive mental activity at night. Thankfully though the negativity, the nightmares, and then depression and anxiety during the day, have all faded away. There's still a bit too much going on though for me to get a really good night's sleep like I used to, but at least it's no longer a case of nights of horror.

Even up until three months ago my HIV specialist was eager to get me onto anti-depressants. I am glad that I insisted they take me off Efavirenz after that one awful year of being on them, and I am glad that I held out and did not take any anti-depressants. I believe they would only have mucked my brain about even more.

I don't want to frighten everybody off Efavirenz. Apparently, studies found that only one in a thousand suffers as I did. However I would like that one in a thousand to know that after a few years of being off this drug things can return to near normal, the neural network does recover. Maybe after a few more years I will have completely peaceful nights' sleeps again.

Best Wishes.

--------------------
Without a dream, life is a broken-winged bird that cannot fly. Keep hold of your dreams.

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