Severe, chronic insomnia for 2 years after HIV scare. Help!

Signs and symptoms
1

Hello folks,

Yet another problem I;ve been having and which continues.

I have been suffering from constant severe, chronic insomnia for just over 2 years.  I had no history of this prior to 2013 - I generally used to go to bed late, but fell-asleep quite quickly (with the TV on timer to go off) and generally only awoke when the TV came back on at getting-up time.  If I did need to get up during the night, to visit the toilet or to get a drink, I would go back to bed and fall-asleep again quickly.

All changed in July 2013.  I had a possible exposure to HIV while abroad, convinced myself I had  caught the virus, and severe insomnia kicked-in (followed by anxiety and then depression).

I was in the Czech Republic at the time, and remember lying-awake for most of the night for almost 2 weeks.  The only thing I could use to try to dose-off was wine, but of course that only resulted in short spells of poor quality sleep.

I came home and visited by doctor, who realised how bad the situation was for me, and he prescribed Zopiclone.

I had various modern HIV tests, all negative, but I had already diagnosed myself and the insomnia was ingrained.  I also had other issues which affected my mental health (and contributed to the insomnia): a relationship breakdown from a few years before that I had not properly dealt with; no job; and ageing parents, especially my mother who had just been diagnosed with dementia.

 

Since then, I have been on either Zopliclone, Zolpidem or, more recently, Temazepam every night.  All of them seem to be gradually losing their effect.  Initially, I was getting good sleep (length and quality) on them, but I'm now having even greater difficulty falling-asleep, and am waking early and unable to get back to sleep.

I'm also on an anti-depressant called Trazodone, which I'm told should help with insomnia, but it doesn't seem to help me.

Foolishly, but in desperation, I started to turn to alcohol again, recently in large quantities.  It would knock me out, but has created other problems.  It makes my depression and anxiety worse, and has affected my liver function blood tests and possibly worse - adding to my anxieties generally and when I go to bed.

I've also tried CBT (on the NHS), relaxation techniques, relaxation CDs, hypnotherapy, etc - all to no avail.

My doctor this week increased my Temazepam dosage from 10mg nightly to 20mg nightly.  I'm still finding it hard to fall-asleep and waking early and unable to get back over.

I just feel I am stuck with this situation permanently, because negative life events are constantly on my mind.

Has anyone any suggestions as to how I can break this cycle of sleeplessness?

Many thanks,

Gavin.

2

Hi Gavin,

I had a somewhat similar experience, with insomnia suddenly appearing one night after a period of prolonged stress. I have successfully beaten it back by developing good habits. Insomnia CAN be beat, but it takes hard work and time.

Firstly, you have to get off the meds. My own recovery didn't start to take hold until I stopped using them. Start with the Temazepam. That belongs to the benzodiazepine class, which are notorious for being physically addictive and the body quickly develops a tolerance to their effects. Get off the other 'z-drugs' too if you are still taking them. Don't go cold turkey, ask your doctor about how to discontinue them safely, but insist on coming off them. The Trazodone is less critical to come off of, as its addiction potential is much less. But try to quit that as well.

Do you have any time off from work? When I was coming off the drugs, I thankfully had some vacation time. Being worry free for a few weeks and recovering with family will help a lot. While quitting the drugs, you might try melotonin. Its not a very powerful sedative, but it is less disruptive to the normal sleep cycle and has a small risk of dependence. Lastly, alcohol is not a good sleep aid. It will help you fall asleep, but the digestion of it produces effects that will wake you up frequently.

Next, you have to deal with your underlying anxiety. The worry from possible HIV is gone, but now the insomnia itself is a great source of stress. If you are anything like me, as your bedtime approaches, you become increasing scared that you will lie awake all night. That will cause the anixety response in your body to turn on, and you will have a very difficult time falling asleep.

I had to convince myself that not sleeping wasn't such a big deal. I learned to look forward to bedtime as just having a chance to lie down and relax. As I laid awake in bed, I would not think about the fact I was still awake; rather I simply thought of something pleasant I had done that day, or that I was looking forward to. If I maintained that attituide, I slept much better.  Also, hold up to yourself examples of good days you had despite not sleeping well the night before. I would say to myself "remember that day at work? You were really productive despite sleeping terribly. See, you are ok without good sleep." 

And there are things you can do to elevate your energy level in the daytime depsite poor sleep. Caffeine in moderate amounts, and before 2:00 pm or lunch is ok. Healthy snacks are good. And regular exercise helps relieve anxiety and can increase your energy. Just make sure the exercise isn't so late in the say that it disrupts sleep. Morning or afternoon is probably best.

You mentioned CBT ... are you still seeing a therapist? CBT is something you have to continue with for months or even years. You may also want to ask about anti-depressant medication ... Trazodone is a very old drug, and actually isn't that effective of an anti-depressent. The SSRI class of anti-depressents are much better. Be sure to ask a pyschiatrist, not your GP. They are much more knowledgeable.

Lastly, practice strict sleep hygeine. You can do a Google search on that, but in particular I would like to emphasize the 'no large stimuli before bed' rule. TV is a large stimuli - flashing colors, frequent changes in noise level and ptich. For the last 30-60 minutes before bed, try light reading. Or something else quiet, relaxing, and enjoyable.

These are things that worked for me - the specific examples I have listed my not be part of your solution, but hopefully they can inspire you. And whatever you try, try it for a long time. Not for 5 days, but for 5 weeks. Let me know how it goes. Good luck!

3

Thank you so much for your long and thoughtful reply.

I have tried to sleep without a sleeping pill or pills, mainly when I have ran out of them, and I just lie awake all night with the worries of the world runnning through my head and torturing me.

Up until 2 years ago, I generally went to bed late, fell-asleep quickly and that would be me until breakfast time, or later at weekends.  If I did wake-up during the night, or had to get up to go to the toilet, I would just get back into bed and fall-asleep quickly again.  That natual ability to sleep just seems to have gone.

I went for a 7 mile walk this afternoon, so hopefully that will help me get off tonight - we'll see.

4

"That natural ability to sleep just seems to have gone." I was having those thoughts too when I was coming off my sleep meds. But its not true. Sleep meds can't do that. They actually don't even induce sleep - they just suppress wakefulness. Its like getting knocked out (minus the whole concussion part). After you get sedated, your own natural sleep mechanisms take over. Trust me, they are still there.

But you can get too used to their sedating effect, and so you have a very hard time without them to reach the state of calm required for your body to fall asleep.

I know its tough to come off them, but the longer you use sleep drugs, the worse it gets. If its really tough, maybe you can start by substituting the Temazepam with Zolpidem. Temazepam is a benzodiazepine type of sedative, which are bad bad BAD, I can't believe docs still prescribe those. Zolpdiem's not great either, but the addiction/withdrawal issues aren't as severe. Then maybe you can substitute Trazodone or something else for that.

You can take your time coming off the Zolpidem or whatever else, but please come off the Temazepam. While it is the most powerful sedative, the side effects are just not worth it. Talk with you doc about it, they should know the best way to come off.

A year ago, I was in a very similar place to you. But trust me, it does get better. Good luck, and God bless.

5

Thanks, D.

Unfortunately, on top of all my other stresses, I have been feeling unwell over the past few days.

I drank very heavily in June and July and, to me, the unpleasant symptoms I am sufffering from are telling me that I have done damage to my liver and / or other sensitive organs.

There is no chance of me getting any sleep, for now, without sleep meds.

I also saw my psychiatrist last Monday and she actually upped my Trazadone from 150mg to 200mg.

Thanks again for your time and for trying to help.

Cheers,

Gavin.

6

Hiya, right I haven't read the other replies so I apologise if this has been said before. Long term use of sedatives is a terrible idea and it drives me mad when doctors do it without exhausting every other treatment option first. You mentioned all the treatments you have tried but I didn't see sleep hygiene? That is THE most effective treatment for insomnia (long term anyway) and it always surprises me when doctors fail to mention it (which happens a lot!).

Please have a google and stick with it. You might see results in a week or it may take a couple of months, but please stick with it strictly and I think you will be surprised at how well it works.

Doing it will also help you out for the next step to be taken on the off chance that the sleep hygiene doesn't work.. and that is to ask for a referral to a sleep clinic. They may be able to help you more.

Things like acupuncture and reflexology may help too. But in all honesty sleep hygiene is your best bet. It is basically sleep training. There is a reason it works SO well for babies.

Also, I understand your anxiety. Did you find the CBT helpful? Sometimes you may need to do two or three courses to get maximum benefit so doing it again might be an idea. It also might help getting some proper counselling rather than therapy.

I think it is very important that you realise the medications are hindering you not helping you. I think you need to come off them, with your doctors support and help of course. I know that seems like a very scary thing to do since they are your crutch, but the will honestly be making things worse. Not to mention they are addictive and the problem is this... you keep taking stronger and stronger meds.. eventually you will reach the top of the ladder... and then where do you go?

I know in this group I shout about sleep hygiene a lot... but that is because it genuinely does work and doctors are terrible at passing the information for this on. It is all free, simple things to do that don't take toooo much effort and at the end of the day.. what have you got to lose?

I wish you all the best. xx

7

Dear Gavin ,  I know that other mean well when they advise you to stop all meds, but often that can be dangerous advice.  You have a Physician that writes for your medications & monitors you, so you need to follow your Physician's advice!  Always follow what your Doctor says. The doc may need to alter your dose levels, or may change to new or different medications. Best wishes to you! 

8

I also wanted to share my bad experience with insomnia.

I am 38 years old living in India and suffering from heavy chronic insomnia for the last 3-4 years, currently i am taking Quetigress (Quetiapine) 25 mg tablet for the last 1 month and prior to that was Serilept 25 mg, qutan25 as per Physciatrist's advise. he said this is a mild dose and not to worry. for life long will i have to take these medicines?

I am able to sleep only if i take the above Quetiapine tablet, my mind is relaxed, no tension, but still not even a single minute i am able to get natural sleep. even if i take this tablet, i have to close my eyes for atleast 15 to 25 minutes to get the sleep or else there is no sleep at all.Day by day situation is getting worse for me, earlier i was taking half tablet, now i had to take full tablet to get sleep, if i take half, i only get 4 to 5 hours of sleep and after that there is no sleep. there is no improvement rather than it's getting complicated, sleep is a dream for me nowadays.It's very painful and makes us depressed.

Last month i had a pathetic experience for 2 to 3 days where i was travelling and also had to attend a function, so there was hardly 2 to 3 hours of sleep with the above medicine, the next day everyone in the family and friends were sleeping as if they were drunk or beaten, but i did not  get any sleep at all, though my body is very tired, eye is tired, mind is calm, still no sleep at any time, i was completely frustuated as why iam living in this world.

in 2012, i was getting 4 to 5 hours of sleep, in 2013, it got reduced to 2 to 3 hours, in 2014,2015 & 2016 i can only sleep with the medicines, without medicine big 0 sleep. i tried calming down myself, keeping mind relaxed, but still no sleep. tried accupuncture, auyerveda treatment, exercise, calm environment, but it did not help, last 1 month i am trying pranyama and meditation, but i still did not see any difference, don't know what to do, i am just 38 years old. i am living artifically in this world. I am guilty to discuss this with my friends or family members, they will be disappointed too, if i tell my parents their sleep will be lost thinking of me, day by day i am going down. i have no family problem, less stressed in the office, but still no sleep for no reason.

Side effects if i don't take medicine - completely no sleep in the night causing - negative thoughts like suicide, blood pressure going high, eye pain, dark black circles near the eye, very tired during day, difficuly in concentrating, memory problem in the day time

Side effects if i take medicines - day time drowysiness and very tired till atleast 11 am. 

I have only 2 choices either take medicine and feel the hangover or completely no sleep with above side effects. I choosed  medicines as i have no other option, whatever happens.

None of the doctors knows what is the root cause and permenant solution for this without medication.

Do we have any solution or live with this pain daily?