Am I mad or is it the meds?

pillsIt’s 00:50 and once again I can’t sleep.

My insomnia has kept me up for the best part of three days in a row now, my mind is tired, my body is exhausted and yet I still can’t sleep.

I go to the bathroom to top up my water glass and I catch a glimpse of myself in the mirror, I look like death warmed up – my skin pale, bags under my eyes so big you could carry your shopping in them, and I’m breaking out in spots -my body has had enough but my HIV meds won’t let me sleep.

This has been going on for months upon months now, sleeping only three or four nights a week, the rest sat up trying to keep myself busy until it’s time to goto work. Sadly it’s become something of a routine – a routine that’s causing me to burn out.

I wish I could say that insomnia was the biggest of my concerns, but sadly it gets worse, over the ┬álast few weeks things have been going bump in the night. I’m hearing and seeing things that aren’t there. It started off as little things, a thud in the hallway, a shadow out the corner of my eye – but progressively they’re getting more and more significant – I’ve heard the front door being hammered only for no-one to be there, giant spiders on the ceiling, I’ve even seen myself sat in my desk chair.

I’m reasonably sure that it’s not a inherent problem with my mind, so much as the medication – the hallucinations only happen after I’ve taken my meds and on nights I can’t sleep. So I think it’s pretty reasonable to conclude that they’re side effects that I’d normally sleep through – but in my perma-awake state I have to endure. What I’m not sure, however, is why they’ve only started now – nearly 18 months after I started this combination therapy.

I’ve asked my doctors to change my HIV meds before based on my sleeping issues but they’ve told me to wait it out, I’m hoping when I see them on the 17th that they’ll take the news of hallucinations and even less sleep slightly more seriously. Either that or they’ll lock me up, and if they do I hope they have wine.

Tom
UKPositiveLad

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About ukpositivelad

Twenty something blogger from the UK. I'm HIV positive and tweet and blog about my life. The ups and downs, hoping to educate, entertain and fight stigma.

Posted on 06/06/2013, in Diary, Mental Health, Personal thoughts, Treatment / Medication and tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. 23 Comments.

  1. I had the same problem when I first when on Atripla… I could not fall asleep, by Friday evening I was exhausted and would sleep the weekend away… It’s much better now, I have found that if I take them in the early evening, I can fall asleep earlier… I usually try to take them by 8:00pm… I say wait it out, if you can. your body needs time to adjust to the meds… be well… remember, you’re not alone… we’re with you in spirit.

  2. Hallucinations might well swing it, or you could ask for something to make you sleep. See your GP, don’t rely on the specialists all the time. My GP prescribed zopiclone for times when it was unbearable. It worked. Bliss.

    Alternatively, over the counter antihistamine based sleep remedies can help but plan a long night’s sleep, preferably on a night with nothing on the next day, as they can make you sleep for a long time. Boots sleepeaze worked for me.

  3. I’ve had similar ever since I have been on Atripla – about 6 years for me now.
    I did have minor Hallucinations at times for the first year but it works to control my HIV so I stuck with it and mostly all I get is broken sleep and sometimes vivid dreams.
    For me, so far this is preferable to the very low CD4 count I started with and I am reluctant to change meds because I worry about having to get used to other side effects with a different combination.

    I guess whether you change meds or take stuff to help you sleep, depends on you and how it affects you.
    I agree antihistamine stuff works better than sleeping tablets, or does for me as I resort to it occasionally and is safe with most ARVs.
    But check with your doctor of course first.

  4. How awful! I am so sorry. Jon’s advice is good. See if your GP will help you.
    All best! xxx

  5. I reckon it’s time to change meds Tom. There is no need for you to suffer like this. Whilst I have had to deal with insomnia ever since I went on to ARVs 19 years ago…I am able to manage this side effect sufficiently to lead a full and active life. Because of my history that includes a long period of depression as well as sleep disturbances…I won’t touch Efavirenz or anything like Atripla that contains Efavirenz.

    Please speak to your HIV doctor or CNS

    Very best wishes

    Maurice

  6. I feel your frustration. I changed onto Raltegravir, Maraveroc and Atazanavir 18 months ago from Combivir and Atazanavir and I’ve had this side effect since I changed. I’m going to try the suggestions others here have given and try my local pharmacist and get an anti histamine based sleeping aid. You can check out the drug interactions website for contra indications yourself this way too in choosing the right one. I’ve had no help from the hospital or my GP with this issue which is a bone of contention for me.

  7. Dr. A Thomas

    How many units of alcohol do you consume per week on average? These symptoms are more likely to be related to excessive prolonged alcohol use than they are the side effects from the combination therapy given how long you have already been taking them.

    • Not that many really, well below the recommended anyway – I can’t afford to drink much even if I wanted to. I’ve never been a heavy drinker – let alone a prolonged one.

      Truth be told ATRIPLA shouldn’t have been prescribed to me given my history of mental health issues and depression.

    • Insomnia is a main side effect of certain HIV meds. It’s even documented in the literature that comes with them.

    • Dr, I’d like to hear more about that! I have been drinking what I feel like is a lot for a year now and I am now drastically stopping because I am worried about my mental health and am having some albeit lesser similar symptoms. It would kind of be a relief to think that alcohol can cause such episodes and that would be a motivation to continue to decrease. Thanks. mrbordeaux@yahoo.com

  8. I came off Atripla after it started to have such a negative impact on my mood. When I first started on it I had the usual issues: weird dreams and drunk feeling especially if getting up in the middle of the night (literally bouncing off the walls on the way to the bathroom!), but then things appeared to calm down. After a period of time other issues started to appear, namely insomnia and psychosis. I would become very irritable if I didn’t sleep and would become excessively aggressive in the outside world. Two examples of this: a guy cut me up to get in front of me in a line of traffic, so I got out of my car and kicked his – resulting in me receiving a punch in the face for my trouble. The second example saw me swearing at members of staff in a branch of Santander in front of bewildered customers and fighting the urge to cause physical harm to a girl behind the desk. In both these situations I firmly believed I was in the right until much later in the day when I could recognise that there was a problem. Talking this through with both my consultant and clinical psychologist resulted in my change in meds. Within a week or so of changing, my mood was better and my sleep improved. It’s so important that you fight to change your medication to something more suitable for you as an individual rather than being forced to stay on a preferred regimen. Getting additional support to help with this can make all the difference, in my case my clinical psychologist was a huge driving force. I hope things work out for you too.

  9. I stuck with Atripla for the best part of two years in the hope that the insomnia and buzzing sound in my head would stop. I finally switche to Viramune/Truvada and hey presto I could sleep and was back to my normal self. You don’t need to live with this side effect – talk to your Doctor about the many other options there are. I love my sleep and regret the many months of horrible sleeplessness I endured unnecessarily.

    Good luck!

  10. If your meds include efavirenz then changing to an alternative is likely to have you feeling normal again within a week. With over 25 meds to choose from, switching is easy. Every HIV forum has lots of similar reports. You do not need to prove anything to yourself or your doctor. Good treatment is about getting the best quality of life. It is not an endurance test. Give me a call at i-Base if you want to talk through options.

    Simon
    020 7407 8488

  11. What Simon Collins said. If you wait it out any longer, you will end up like me and waiting it out for six years. There is no pride at stake in this and changing drugs isn’t a failure on your part. Insist.

  12. As everyone else has said insist on change. I’m now on my 4th change of meds trying to get it right. I’ve been on my current lot for 18mths and still I’m not sure they’re right for me, as in the last few months I’ve had suicidal thoughts something I’ve never had before. Interestingly though when you tell the Doc about what you feel are side effects that’ve started 12 months after taking them (in my experience) they always say well it can’t be the meds, you’d of got thru the side effects within 3/6 months. I don’t think that’s true, some of these drugs are so new how can we know?

  13. I was on Sustiva many years ago as a first regimen. Within 2 years time it caused major mental health issues which resolved within days of switching regimens. The new regimen (and current) was/is Reyetaz, Norvir, Truvada. I’ve been on these for about 7 years. The insomnia is horrible and within the past year or so I developed major problems with mood swings. I had a major nervous breakdown which ended me up admitted to a psychiatric ward. I was put on Wellbutrin, and given Seroquel for sleep. Antihistamines, etc do NOT work for me. And Ambien poops out after about 2 months or so taking it nightly. The only thing that has given me some rest is Seroquel… however Seroquel made my depression worsen so I stopped it and tried 15 mg of Remeron… Sleep is fitful at best on the Remeron but better than none. I am now discussing with my CRNP about switching regimens yet again. Oh what I wouldn’t give to have a good nights sleep without depending on a drug to put me out! My depression is better now on the Wellbutrin but I can still tell that something is not quite right in my head. I’m hoping a new regimen will clear up the cobwebs so I can return to living the life I once led before all of these negative issues began. Good luck and God speed to you all!

  14. I have been on Atripla now for 7 years. The first few months were actually fun. I had wild dreams which were actually pleasant. I still however have random sleeping issues but not to the point of making me miserable. Some meds work better for people than others. It’s worth sticking it out for a few months provided there are NO LIFE threatening issues going on.

  15. Tom, you’ve “got it bad”. You really MUST be strong and insist on help. There ARE HIV specialists out there who really want to help, though sadly there are also many HIV specialists out there (and this is not just a UK problem) who take the attitude of “Tough cheese! Too bad! You just have to put up with it, I’m afraid.”

    When they put me on my first regimen it included Efavirenz/Sustiva and they told me to take it before bed. Within weeks I was having horrific nightmares, so that I woke at about 2.30am, pumped full of adrenalin and fear such that I couldn’t get back to sleep until about 5am. Then by 6am I was having yet another horrific nightmare and woke yet again full of adrenalin and fear. Like you, they told me to wait, that it would go away, that it usually did. Well, I believed them and so my hell continued for 12 months until I was suicidal. (Sleep deprivation causes serious depression which can lead to thoughts of suicide.)

    So just after 12 months when I went to my next blood-test appointment I really created stink, told them that I couldn’t go on, that something had to be done. But all this did was cause them to tell me to take my meds first thing on rising in the morning. (They hoped that the psychotic effects would wear off by night-time.) Taking Sustiva first thing in the morning resulted in me being strangely detached, numbed, as if drugged, until about 11.30am and then, whoosh, I became high! From about 11.30am until 3pm in the afternoon I felt like Superman! It was great. But the nightmares returned each night, regardless of taking the Sustiva in the morning.

    Next time I went for the blood-tests, I reported all this, and they said it wouldn’t do, my being high, and so they finally replaced the Sustiva with something else: Neviripine. However, the nights of hellish nightmares that Sustiva had set in motion did not stop. They said it would. That I should be patient. I was.

    So after another year, after a total of two years of hell, sleep deprivation, and regular suicidal thoughts, they put me on Neviripine and Truvada. There then followed two weeks of even greater night-time hell than I had experienced before! After two weeks I demanded an appointment and insisted that something be done. They said that Truvada included Emtricitabine and that it was the likely culprit. They changed me to the combination of Tenofovir, Lamivudine, and Neviripine.

    I’ve been on this combination of Tenofovir, Lamivudine, and Neviripine now for seven years, and I can tell you that it has taken until about six months ago for the nightmares to finally go away. I still dream too much, but at least the hellish nightmares have gone.

    Now, has my body simply finally adjusted to the meds? Has my body finally relaxed after the extreme reaction to that year of Sustiva? Or is it the power of aspirin?

    About a year ago I read that people who are HIV ought to take a little aspirin every day, not only to keep the cardiac system in good shape, but to help deal with the internal inflammation that affects everyone who suffers from HIV. And so I began to take aspirin once a day. I believe that the aspirin has had an effect not only on the inflammation of internal organs but on either inflammation of my brain or the excessive activity of it at night. I believe the aspirin has somehow calmed my brain.

    In addition to taking the aspirin each day (a quarter of an ordinary-sized aspirin tablet per day, of the soluble sort, dissolved in water), I also drink no coffee or tea after 9am, I exercise rigorously for 20 minutes every morning, and I drink no more than one glass of wine per day. As a result I am coping. I hope that something in this may assist you.

    But if these ideas don’t help you, and if your HIV doctor isn’t bothering to get to the root of your problem, then pressure him or her, and if you don’t receive satisfaction, then just go elsewhere until you find an HIV specialist who really cares. They do exist. Sadly, none of mine have really cared. They’ve all been old-fashioned “clap doctors” who are just used to dishing out the tablets for various venereal diseases and taking life easy. But I have made email contact with a fine HIV specialist here in the UK by way of thebody.com, and he’s been a great help. This is the kind of ingenious and determined sort of self-help that we people with HIV have to indulge in if we are not fortunate enough to find a really good specialist at our local clinic.

    I really hope that there’s something in the above that will help you.

    Best Wishes.

  16. Atripla contains tenofovir which can and does damage the kidneys: you end up pissing away vitamins and minerals you need. The hallucinations you describe match very closely the hallucinations I was having when I was hospitalised with Fanconi’s syndrome last year: insufficient potassium in the brain leads to distorted thinking, A year later I still have memories that I know are of hallucinations, but they have the rich texture of memory.

    A year later I still have the occasional hallucination, and most of my thirty pills a day are supplements. The new formulation of tenofovir is due at the end of the year; as it stays closer to reservoirs of HIV rather than roaming freely, it’s expected to carry less side effects that the fumarate version. To be perfectly honest I believe that efavirenz and tenofovir should be removed from the market now. They’re already not prescribing efavirenz to people who’re in jobs where precision is needed. Tenofovir looked the perfect drug until we started getting news of kidney problems and calcium absorption problems (The question is now academic as the exit hole has closed too much, but with the calcium supplements I had to remove my PA every couple of weeks to soak the limescale off it, something I hadn’t ever needed to do before and I had it for fifteen years). I’d strongly recommend looking for a combination that contains neither of these drugs.

  17. Steve, thanks for the above! Very interesting to hear from you that there’s to be a new formulation of tenofovir at the end of this year. Can you direct me to a good link about this?

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