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BrokenWingedBird
Expert

Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Ridiculous night-time brain-acitivity
      #233480 - 11/09/07 05:17 AM

I was on Efavirenz (Sustiva) for a year. This was about two years ago. And I was one of the several-in-a-thousand who had serious mental side-effects from it. The main problem was horrific dreams that woke me at about 2am and in such a state of panic that it was impossible for me to get back to sleep. Deprive a person of sleep night after night and they become depressed. In me this depression led to thoughts of suicide and how best to bring my life to an end.

Anyway, I made a lot of noise at the clinic and they finally agreed to put me on something else. So since the change-over, two years ago, I have been on:
Nevirapine (Viramune)
Tenofovir (Viread)
Lamivudine (Epivir)

The horrific dreams stopped long ago, but I believe the Efavirenz caused long-lasting changes (or damage) to my brain. For the last two years my mental activity at night has been ridiculous. From shortly after I fall asleep until I wake up I dream, dream, dream . . . and these dreams are full of intensity, of things happening, and people discussing and negotiating. It's gripping stuff, always, but, thankfully, never enough now to wake me up. I am aware of this intense (and exhausting!) mental activity because when I am woken by a cat, or by my partner, or the alarm clock, or by a need to go to the loo, I find myself in the middle of such dreams. Upon waking though, they go within seconds . . . only to resume as soon as I fall asleep again.

As I say, this is exhausting. I believe it lessens the quality of my sleep and therefore my life. The main reason for writing about it here is that when I have mentioned this matter to my doctor he has always responded with with something like, "No, that's not mentioned in any of the literature". This really makes me angry because it is of course me who IS "the literature". I am reporting this as a person with HIV who has responded badly to Efavirenz.

Furthermore, I don't believe I am alone. I am quite sure there are many others out there who are experiencing the same ridiculous night-time brain-activity. We need to make this long-lasting side-effect of Efavirenz heard and understood.

If you have a similar condition please let me know.


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

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Bear60
Legend

Reged: 12/21/05
Posts: 1390
Re: Ridiculous night-time brain-acitivity new
      #233517 - 11/10/07 10:28 AM

I have been treated with acupuncture for this sort of thing and have felt some relief. One treatment is not, however, enough. It is necessary to be treated on a long term basis.

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6 ft tall poz bear in Philadelphia

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vokz
Grand Master

Reged: 09/06/07
Posts: 164
Loc: London, UK
Re: Ridiculous night-time brain-acitivity new
      #233518 - 11/10/07 11:28 AM

What is it your doctor is saying isn’t mentioned in the literature? Exhausting vivid dreams? If so, I would love to know what literature he is reading, because that is one of the best known, most common and well documented side effects of Sustiva (efavirenz). It is even declared very clearly in the package leaflet that comes with every bottle of pills: “abnormal dreaming” – it really couldn’t be clearer.

What is perhaps unusual is that you would still be having the dreams two years after you stopped taking the drugs (especially as that side effect is generally fairly short-lived and tends to fade away within six months, even if you continue taking the drug).

Whether or not, in your case, it is caused by the Sustiva I really don’t know; but if this is your HIV doctor, then I would think very seriously about asking for a second opinion, or finding a doctor / clinic where you will be take you seriously and given some help (in the UK, having a second opinion arranged from a suitably qualified doctor is your right as a patient .. so, if they wont give you it, complain).

The exhaustion doesn’t stem from the fact that you are dreaming. It stems from the fact that you spending a lot of time in a non-recuperative light sleep state (which is the state in which we dream).

I don’t know what to suggest in terms of solutions. Sedatives and sleeping aids are rarely the long-term answer, because they tend to give you an equally, if somewhat differently, unsatisfactory sleep.

When I was getting the dreams thing in the early days of treatment, I found that the best way to combat it was to get plenty of exercise and make sure I went to bed physically exhausted; because that exhaustion tended to ensure that I went straight into deep sleep. It may be worth trying.


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BrokenWingedBird
Expert

Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Re: Ridiculous night-time brain-activity new
      #233545 - 11/13/07 07:57 AM

Thanks for your thoughts, Vokz.

To answer your question: my doctor says there is nothing he has seen in the literature which supports my belief that the ridiculous night-time brain-activity that I now suffer from is due to the Efavirenz which I stopped taking two years ago. In other words, he says he has not seen anything in the literature suggesting that Efavirenz causes this long-term side-effect from which I suffer - which, to be blunt, is actually a form of "brain-damage".

Now, firstly, I have to say that my doctor does not impress me as being perfectly up to date with everything in "the literature". Secondly, dealing with HIV in my life is quite enough for me to have to cope with: I'm not going to start ploughing through the literature myself. That's why I thought I would ask the question on this group: to see if others have experienced something similar. I realise that if I don't get many responses here it won't mean a lot - because the extreme reaction to Efavirenz (while taking it) is only experienced by something like one in a thousand patients. Also, within a few more days this message of mine will have been pushed down the list by newer messages and won't be seen by so many. But what else can I do? Where else can I ask the question?

As for seeking an opinion from a second doctor, I see little point. I am the patient, I am the sufferer, I KNOW this permanent damage IS the case. I don't have to have any doctor confirm it. The doctors learn from us: we are the poor buggers who have to take these highly powerful drugs. We are the ones who provide the data. And I am telling the world that I was one of the 1-in-a-1000 who suffered horrendously from Efavirenz and that 2 years after having stopped taking it I notice that it has left a permanent and undesirable effect upon my brain.

Maybe if enough of us rare "post-Efavirenz-sufferers" come forward about this, then something WILL be written about it, and then the doctors will learn about it in their literature.

Thanks for your thoughts.

And, yes, tiring oneself out physically does help a bit.



--------------------
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.
Evidence of abnormal brain-activity new
      #243361 - 11/26/08 05:18 AM

Just to update this thread. Research has just been published (in November 2008) proving that while ART control the virus in the blood and allows the CD4 count to rise, the virus continues to cause damage in the brain. The brain responds to this by going into overdrive.

New research has just appeared showing that "The powerful antiviral drugs that keep many HIV patients healthy for years don't completely eradicate the virus from the body, and in the brain even the very low levels that remain cause relentless damage. . . . Suddenly the brain environment turns from nurturing to toxic, and the brain has to work much harder to send messages. Cells are on overdrive, spending a lot more energy to do the same things they used to do easily."

I know this is happening to me and I know some other HIV people have reported it, but up until now I don't believe there has been solid research which supports our experiences. When I have mentioned my cognitive problems at my clinic, to the specialist and the nurses, they have dismissed them, saying they are unrelated to HIV and due simply to getting older.

The full report is at:

http://www.sciencedaily.com/releases/2008/11/081114134921.htm



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

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