Zolpidem users: a debilitating surprise awai... - Sleep Matters

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Zolpidem users: a debilitating surprise awaits at 65

Patrickk profile image
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I took Zolpidem (a.k.a., Ambien) for 12 years. Last spring my doctor cut off my prescription without discussion. Around the same time my brother's doctor cut his prescription from 10mg to 5mg without discussion. At same time a fellow employee of my brother had her prescription cut off – without discussion also, I believe. Same time frame, I was refused a prescription for Zolpidem by an online nurse practitioner.

I cannot imagine a sufferer of, say, migraine headaches being treated in such a neglectful way -- in such an unscientific way -- to be left without treatment for a seriously debilitating condition (insomnia) without even a sit-down discussion.

What’s apparently scaring the doctors off is stats building up about accidents (at home and on the road) for the elderly – reported memory problems (for the great majority, including me nothing especially severe) and reports of strange behaviors (e.g., sleep driving) on Zolpidem. Doctors seem to jump away from these daunting side effects with an almost Pavlovian response – without ever considering that for insomnia there is no other sleep aid that does not have a half or all day after drug cloud to live with.

I DON’T WANT TO BE PROTECTED FROM FALLS IN THE KITCHEN AT THE EXPENSE OF LIVING MY LIFE IN SOME KIND OF HANGOVER MIASMA. That’s the issue our doctors somehow seem to miss wholeheartedly with UNIQUELY hangover free Zolpidem.

I speculate that is because – what I call the physical doctors; as opposed to the psychiatric practitioners -- can't measure insomnia; can't weigh it, can't take its temperature, can't sew it up, wouldn’t know where to sew it back – insomnia doesn’t really exist for them.

IOW, nobody’s knocking to ask them to open their motivational door – not nobody home; nobody even knocking – on a deep motivational level. So they don’t even get around to the purely scientific level that they are so deeply trained on.

There are 38 million Americans on Zolpidem – 85% of all sleep aid prescriptions. Are we going to take all of them off their most practical (no hanging on-hangover) and effective sleep aid just when they need it most? For my part I am going to seek a prescription from a psychiatrist. I am very optimistic. I think that with a doctor for whom insomnia is a tangible, palpable, corporeal thing – the argument against being consigned to a life in the miasma to protect against falls in the kitchen – or just losing sleep every night -- will be very compelling.

Notes: I can cut a 10mg tablet in three parts – and take one whatever time of night I can’t sleep. Only had five hours sleep? Take one piece: 25-45-50: 25 minutes to act-45 minute blank brain (unless I want to think about something)-50 minutes to waking, bright eyed and bushy tailed.

If I drive without taking the drug (after five hours sleep) I can feel less concentration and patience. No such lack of clarity if I take the drug as little as two hours earlier. If I were making druggie “mistakes” I would intellectually know it.

Note: My time-fitting (4 hours sleep to go) nights, OTC substitute -- Diphenhydramine: medicalnewstoday.com/articl...

I also wake up from Diphenhydramine feeling like I’ve been hit by a truck. Great.

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Patrickk
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kaliska0 profile image
kaliska0

Try sending them some of the proven, measurable data of what happens when you don't sleep enough. Same risks.

sleepfoundation.org/excessi...

sleepfoundation.org/sleep-d...

aaafoundation.org/acute-sle...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

health.harvard.edu/blog/lit...

However, trying to solve it with zolpidem really isn't a good long term option. As I was first told insomnia is a symptom and not a disorder on it's own. You have a health issue even if it's not obvious and aren't treating it. Problem is even the top researchers into insomnia can't tell you what the cause is. They've attempted to group types of insomnia into categories a few times but have so far failed because of how inconsistent symptoms are. As you said measuring insomnia is extremely difficult. The clues to the cause are often related to some vague or minor symptoms you ignore. Especially as you get older and just think it's due to aging.

It can be related to minor ADHD or other neurological disorders that often go undiagnosed and can make the results of sleep loss considerably worse compared to the average person. The minor symptoms of the disorder get blamed on the lack of sleep making it harder to diagnose and sedatives are sometimes the entirely wrong treatment approach resulting in a further decrease in sleep quality and the need for even more hours of sleep.

sleepfoundation.org/mental-...

ncbi.nlm.nih.gov/pmc/articl...

Others experience some minor signs of reproductive hormone imbalance like more than the usual teenage acne and some mood changes they attribute to the lack of sleep when both are actually less than ideal hormone levels. This may be an otherwise minor issue but it can sometimes be a major issue hiding under minor and past symptoms. Minor reproductive issues can cause major symptoms for some and major reproductive organ or hormone issues can cause almost no symptoms for others. Symptoms are not a good gauge of such things and insomnia is one of the less obvious results. Reproductive hormones are also increasingly showing in studies to reduce the effects of aging in both genders.

ncbi.nlm.nih.gov/pmc/articl...

frontiersin.org/articles/10...

sleepcenterinfo.com/blog/wh...

pubmed.ncbi.nlm.nih.gov/108...

pubmed.ncbi.nlm.nih.gov/108...

ncbi.nlm.nih.gov/pmc/articl...

betterhealth.vic.gov.au/hea...

Some are slightly too low or high in thyroid hormones but not enough for easily identified symptoms. Levels may not even be enough outside of average range for many doctors to consider treatment necessary and still impact not only your sleep but energy, metabolism, and overall health to be borderline low or high for many years. Sometimes thyroid can be mildly affected by something temporary without a true thyroid disorder but this is not recognized by most doctors.

ncbi.nlm.nih.gov/pmc/articl...

sleepfoundation.org/physica...

kresserinstitute.com/why-yo...

Sometimes it's one of those endless metabolic issues that doctors are not trained to diagnose or treat. The conversion of food into things your body needs to function is incredibly complex and can break in numerous ways that don't make obvious symptoms but can lead to an overall decline in health, sleep, cognitive function and food cravings you just come to accept as normal for you. There is increasing interest in genetics testing to determine ideal foods or supplements to help with vague symptoms, poor energy, weight issues, and other things that can result from reduced enzyme production or other minor metabolic issues. Having the combo of genes that results in the lowest production of an enzyme that uses folate to process proteins combined with my high estrogen and lifelong sleep problems spiraled into such widespread problems I was nearly bedridden but typical doctors could find nothing wrong.

ncbi.nlm.nih.gov/pmc/articl...

webmd.com/a-to-z-guides/inh...

A growing area of research that relates to many of these problems are immune system disorders. Doctors are as bad at understanding and accepting various immune system dysfunction as they are at grasping the complexity and severity of insomnia. Our understanding of many immunological processes is quite poor. That became evident when doctors first started treating covid 19 patients and we still don't fully understand some of the reactions and damage people can have. The immune system overreacting to things is a leading theory of fibromyalgia and chronic fatigue syndrome. It is also some of the first recognition by medical professionals that inflammation can impact the brain.

soundsleepmedical.com/blog/...

health.harvard.edu/sleep/ho...

ncbi.nlm.nih.gov/pmc/articl...

nature.com/articles/s41577-...

Along with metabolic differences in people another major thing being found in many different types of disorders and sleep problems are genes altering dopamine function. ADHD, Fibromyalgia or ME, and numerous other issues both psychiatric or physical health problems have turned up the same genes altering dopamine production or usage. We are coming to realize it plays a far wider role in our health than previously recognized. Despite half the receptors for dopamine being downregulating or calming it is considered a stimulant so often recommended to avoid. Many find dopamine supplements improve sleep and other random. Majority have to take such supplements earlier in the day and get benefits later. Some are among those handful with such impaired dopamine they use simple otc L-dopa or even stimulants whether otc coffee or prescription to fall asleep at bedtime.

This article is written by an individual but summarizes the many purposes of dopamine and how it can be reduced or impaired by health issues resulting in more health issues and among them sleep disorders.

mybiohack.com/blog/all-ways...

As many of the articles point out reduced sleep often causes the same issues that cause the reduced sleep. Covering it up with general sleep aids instead of trying to find and treat related symptoms can result in steadily spreading and worsening of what may seem like unrelated health issues.

Patrickk profile image
Patrickk in reply to kaliska0

I'll get through your treasure trove of stats in good time.

The study I'd like to see is what happens to the lives of patients kicked off Zolpidem (Ambien) -- most without discussion -- although it had been one of the pillars of their lives for years, and even decades.

Do they settle unhappily with a drug that leaves them trapped in a half or all day yukkie hangover? Do they leave medication behind altogether? Do they do what I do: half the time no drug at all (and only 5 hours sleep)/half the time the OTC, dementia accelerating poison (that's what should be banned!)?

I saw a complaint on a blog from a man who had been out of work for three years for loss of Zolpidem prescription. Now, after returning to work for a year and a half he was in a panic because his doctor was leaving. Did the doctors who refused his prescription consciously weight the impact of loss of employment (loss of friends; loss of building a family; loss of everything of value in his life) against the danger of tripping and falling in the kitchen?

kaliska0 profile image
kaliska0 in reply to Patrickk

All of the above and you won't find numbers because doctors don't pay attention to that or want to. Some find another doctor that gives them the same med(s). Some just suffer forever with nothing. Some get some relief with other meds. Some go looking for otc solutions. Some find good ones and some don't. Some actually find other meds work better. I went through all of that and more and I still have to fight every year to get treatment that will improve things more than the year before.

Doctors really don't care what happens when they decide to stop treating a patient. Not their problem anymore. Most also don't care if you find their treatment plan isn't enough to give you a life either. I've been left crying in the room as doctors walked off after refusing to do anything more than some bare minimum that I knew had low odds of helping at all and wouldn't help long term. I've been left sitting there trying to find the strength to get up and walk out with nothing when I couldn't even cry because I hadn't eaten, drank, or slept from pain and could do nothing but stare at the wall debating ways from possibly logical to outright insane that might remove what turned out to be a dead, infected tooth before I passed out from increasing the pain any farther in the attempt. 1 or 2 real pain killers instead of high dose ibuprofen would have gotten me to Monday when the dentist was open but they wouldn't do that. Trying to make doctors actually understand and weigh risk versus quality of life accurately is extremely difficult because they only look at it from their point of view. How bad THEY think YOUR symptoms and quality of life are. Not what you feel, experience every day, and think is worth it to be able to keep living.

The only time I've seen anything close to reporting how many people are left untreated by doctors is Canada's medical system put out some report on number of patients requesting a new doctor numerous times for failure to treat their symptoms. They gave an estimate on the number of people who don't get sufficient diagnoses or treatment and the extra strain on the medical system caused by doctors that choose not to put in the effort or who make decisions against their patients' wishes. Unfortunately I did not save the article with that review and it's unlikely I could find it again. No other medical care system seems to even want to have an idea how many people they fail. The US in particular much prefers to blame doctor failure and poor quality of life from untreated symptoms on the patients. Often they will claim a person did not comply with a treatment plan that would have worked when the person was certain it would not, may have already tried that approach or med before and had proof it didn't work, or isn't even capable of attempting it and the doctor gives them no other option.

I joked that if I had kept every sleep hygiene paper I'd been given and had a wood burning stove I could heat our house through an Iowa winter. It gets to -20F here and sometimes -30, which at that point is about the same in celsius. Half of the suggestions to improve your odds of getting to sleep doesn't even apply to me because I have ADHD so my brain kinda works opposite for some things. TV is sleep inducing. Books are alerting. Lots of activity before bed is good. Caffeine is a sleep aid. A silent, dark bedroom is a great way to stay awake past sunrise as my brain has nothing to distract it so it just keeps thinking up more and more stuff with more and more energy even as overall I get too tired to do anything about it. Try to explain that to doctors. I just get an anxiety diagnoses for the billionth time and then when I deny anxiety symptoms a depression diagnoses. One doctor told me I don't know what I'm feeling after I kept saying she was wrong. Doctors can't be wrong. If you do everything they say your life will be better including stopping your useful medication because of some possible negative effect that there is no sign of it happening. If it doesn't improve things then you must not have followed all their advice or you are faking or exaggerating your symptoms. Then I get lectured by either that doctor or the next one I see for not continuing to follow the instructions that will supposedly at least contribute to solving my insomnia or other symptoms when it's sometimes the opposite of what I find helps.

No, most doctors do not consider the effect of not giving a medication or other treatment that has any negatives. Despite the fact all medications have risks at any age or condition of health. They are stuck on the whole "do no harm" without accepting that through inaction they are often doing more harm. Like standing there watching someone die so they won't risk killing them a little faster even if there is a chance they could save them. If they do nothing they aren't held responsible for the result like they are if a medication side effect causes a bad event.

You can try taking in all the proof of what happens when sleep disorders go untreated and I probably would but I wouldn't have much hope of it actually getting me the same medication back. I'd probably also bring in a stack of articles and studies on some alternative medications to start going through until I found another that a doctor was willing to prescribe and also helped. The time I did that worked a lot better at getting treatment out of a doctor that wasn't going to do anything useful.

strongmouse profile image
strongmouse

I's suggest that you book an urgent appointment with the doctor and take all eveidence with you. When coming off sleep medication in the UK there should be a phased plan (NiCe guidelines).

Obviously it helps if you can pinpoint the cause of sleep problem, if it is related to a particular illness. Perhaps ask to be refered to a sleep clinic for assessment? Definitely your quality of life is important part of the issue. Sounds as though the doctor is being irresponsible and not following all the guidelines.

nice.org.uk/guidance/ng215

WhyWynonna profile image
WhyWynonna

I'm so sorry you're going through this. My mother had this happen with her anxiety medication and my grandmother with her pain medication. It's horrific to cut someone off a medication they need in order to function.

Very informative thread here. Thank you for posting all the information.

Patrickk profile image
Patrickk

I have come to believe that prescribing Zolpidem/Ambien ought to be reallocated mostly to the realm of psychiatrists -- because psychiatrists have the training -- and the inclination -- to do the necessary work up and careful follow up -- and primary doctors, more and more clearly in my hearing, definitely do not.

The clear trend in the "physical illness” medical field – I hear about it over and over – is of medical doctors zapping long running prescriptions for Zolpidem without so much as a five minute, intelligent discussion about how much the withdrawal of their sleeping crutch may upset and or even upend patients' whole ways of life.

Logically, one would think that interruption of a long running, successful treatment for a seriously debilitating “condition" (we don’t use the word “illness" here) should necessitate a careful work up and follow up.

It is not like there seems available any routine Zolpidem substitute, like switching from antibiotic to antibiotic. Therein lies the patients’ dreaded rub. Candidate substitutes all seem to introduce serious (yucky feeling) drug hangovers for maybe the first half of patients waking hours. Alternately, patients can spend all their waking hours in a sleep deprived haze (w/o drug).

I mostly need help getting my last two hours of sleep. I take a 3-4mg dose cut from a Zolpidem tablet after the first five hours and wake up 2 hours later bright eyed and bushy tailed – zero, ZERO, drug hang over.

Five minutes after I wake up I feel perfectly fit to drive a car. Logistically perfect. Doctors will fret that the “hypnotic” is still in your blood stream even if you cannot sense anything like that – causing you to make mistakes even if you feel perfect.

After trying one Zolpidem “substitute" (Mirtazapine) I made one major driving error and had to concentrate hard to avoid two others -- two days after I downed it! But, intellectually I had no problem knowing I was doing somethings very wrong. Ditto, if I drive on five hours sleep -- I am definitely aware that I am a bit short on patience and judgment. 12 years on Zolpidem; I have never received any “intellectual” message that I am driving incorrectly because of the drug.

So a close look at me, anyway, would seem to obviate extra driving accident concerns.

Even if Zolpidem doubled my accident risk – on the road or slipping and breaking my knee in the kitchen – I prefer that to enduring a drug hangover half the day (from a “substitute”) or to living in a sleep deprived daze all day – every day of my life in my case. I know; I recently did four miserable months alternating between all day sleepiness and half day gradually shedding the feeling of being hit by a truck. That half day was what I lived for.

My OTC “substitute” was Diphenhydramine (Benadryl) – recently reported to bestow the maximum risk of developing dementia.

medicalnewstoday.com/articl...

But, this is the caliber of workup and follow up detail that psychiatrists are primed to ferret out.

Memory loss? Zolpidem doesn’t make you forget anything you have learned already – or anything new about how things work together. Less than 1% of users have clinically significant memory loss (whatever that means).

Somebody should do a study of 1000 insomnia patients who have been bumped off Zolpidem (most, probably without discussion) – and 1000 who had their dose halved (probably from 10mg to 5 mg) – to see how deep an effect this may have had on their lives, up close and personal.

But, this is the caliber of follow up that psychiatrists are primed for. (Did I say that already?)

In one internet conversation, a patient was panicking. He had previously been out of work for three years because he couldn’t sleep. Now, after a year and a half on Zolpidem, his doctor was leaving and he was afraid he couldn’t get his prescription renewed (I've been there). Do you think his doctors realized that they were denying him everything else in his life – job, ability to raise a family, pay for entertainment – to make him safer from slipping and breaking his knee in the kitchen? Did they think all that through?

I have seen one chart (link below) that shows annual Zolpidem prescriptions have dropped from 45 million to 10 million from 2012 to 2020. Does that mean that 35 million Americans are now walking around in drug hangovers for hours, or in a sleep deprived hazes all day – in insomnia periods? Could that be? (The chart is at the end of a blog post mostly on another topic.)

jabberwocking.com/health-up...

I am nothing if not grandiose. I envision the day when everyone can go down a checklist that identifies whether or not they likely have what is known as insomnia – and 50 or 60 million patients are taking Zolpidem.