Bluewisp: seeking truth to control my life again

[Bluewisp]

Thanks senseless, but I'm at 0.25mg now. Living on this is too hard so I cannot afford waiting too long to taper again. Peeing 1/3 of the night (every 25min for at least 2 hours) already break my sleep duration even with no insomnia and I sleep no more than 5h to 5.5h since months, for the "decent" nights with no insomnia, while I got 4h of sleep maximum in November and December, often less, the worst nights was a 2h of sleep cumulative. My job is becoming complex, I'm a TI worker, and I can hardly focus and work, my memory is failing, plus my speech became very slurred the more I got near 0mg. Not mentionning that I must search for a new place to live soon. That's why I got shortcuts. I can live mostly normally with 5.5h of sleep but I cannot go under.

 

I've spent one month to 2mg, then I realized that my sleep was the same at 1.5 So I got to 1, then 0.5 in a few days. Surprisingly, I still got my 5.5h, with no interruption. Without the peeing at every 25 minutes from 11pm to 1am, I would probably get more hours. This is a static effect, I had it on the last 5 years at least, but it's worsening somehow during tapering (the window of time moves and is larger). But 1.5-2h of duration is "normal" for it, meaning it's not the tapering. From 6:00 to 6:30am I often cannot sleep again. So I measure the insomnia as: "under 5h of real sleep or with interruptions of 1h or more between". If I'm above this, I consider I can taper again. Actually, I can feel it when my sleep is disabled. It's similar as the feeling on a lot of coffee. So, this thing is not there from 2 to 0.5. On Thursday I decided to give a shot on 0mg again. I felt the somnolence to disappear progressively from 9pm to midnight. Which was a very bad sign. I needed the toilet from 11pm to 3:15am, every 25min, and my sleep was totally disabled until 5:45 when the insomnia window vanished. Waking up at 7:30 to pee again, I was also able to sleep immediately back until the alarm get me at 8am. Despite that I was mad seeing my freedom postponed again for a tiny little **** that I never needed and that ruined my youth and best part of my life, I learned interesting things:

 

- Night itchings: crazy in August from 50 to 0, to blood almost and non stop all the night. VS Now, light, only part of the night.

- Insomnia window under 12mg until I have a valid stable liquid solution at 2mg, was covering not only the night but was covering up as late as 11:30am as well, totally opaque, 0min of sleep. Now: it ended at 5:45am.

- Before 2mg, sleep was felt not good and not natural, and I was never dreaming. Now: quality sleep started from 2mg, I started to dream again

- Somnolence was not present before 2mg. Now it starts at 8pm and grows.

 

So the day after my try from 0.5 to 0, I tried 0.25, it was the last night. It was a miracle. I slept from 12:30am to 9:30am, no peeing, a deep sleep with dreams, I even don't remember when I slept for so long and so good for literally 10 years... It may be a pendulum effect but even when I passed from 0 to 50xr again, it was never so long and good. We will see it next night. I know I go fast and take risks but how much time I saved trying 1.5, 1, and 0.5 on a week? I saved probably 6 weeks of hell (other symptoms). 0.25 was really risky, but I got there. The presence in blood is enough to do trouble, but the insomnia trigger is now somewhere between 0 and 0.25mg. As I see it, the goal is to go near the trigger point, wait a while, then the trigger point go down. But you cannot really know what it is without risking. I'll stay at 0.25mg for a week at least, then I'll probably try 0.125mg

[Bluewisp]

Tried 0.125mg friday. No change to my sleep. So I got one step further, 0.06mg last night. Still no change to my sleep. The insomnia trigger is hidden somewhere between 0 and 0.06 then. Since I start to work tomorrow, I must postpone further tries, as usual. This make 0.75ml extract of 300ml in which I put 25mg which is very tiny. Soon I'll have to use more than 300ml and exchange my jar for a cooking pot. I would need 1L for an extract of 1.2ml at 0.03mg. Otherwise at 300mg of volume, it would be 0.36ml of extract and it's starting to be very hard to measure with the syringe. I'm a bit worried that in a pot it will be harder to mix than in a jar, because the width is large, and it's harder to spin fast enough even with a ladder, for the suspension to stay high and not fall. Plus, normally I take the extract by one hand and spin with the other, this making the best chance to have each drop with the same ammount of drug. It will not be easy in a pot. I'll probably go down to 0.18ml of extract before to switch (it means, 0.015mg). After this I will have no choice: I can't deal with a syringe for 0.09ml. Or maybe I'll stay a while at 0.015mg and try zero after.

[Bluewisp]

After 2 nights at 0.06 in which I was unable to sleep before 4:30am or more, I'm back to 0.125mg. I've hit the wall. I guess I have to stay on 0.125 for a while now. I don't know why it worked the first night. Usually when it fails, it fails immediately. Each time I need to stop going forward, I feel the weeks that I still have to endure this and this is really discouraging. Especially so close to zero. The fat and sugar craving is crazier than ever, and got me to take 5 pounds. Fortunately the remote working keeps me at my job and nobody can "see" and feel the difference.

[Bluewisp]

Even at 0.125mg I got one week with nights barely above 3-4h of sleep. Sometimes 5 or 5.5 but rarely. Totally exhausted, I upped to 0.1875 (total water: 1L, extract: 7.5ml) and I decided to start noting total sleep hours of every night to keep track of the progress. The first night was 7 to 7.5h which is normal, every upping give a good night for one time and one time only. Next night was 5. The last was 6 to 6.5 non cumulative because I can sleep in the morning since it's the week-end, but it was 5 cumulative. My tolerance is 5 or 5.5. If it goes under, from now on, I'll simply stay above for a while. I guess I have no choice. One of my symptoms other than insomnia, take 3 weeks to vanish, so I expect it would also be 2-3 weeks of stronger insomnia if I would try to endure under 5h of sleep per night. I don't think it would be a few days... That's why I upped. I would be too demolished to be able to have only 3-4h of sleep for 2-3 weeks. In fact I may lose more time by trying and upping back after a week upon failure, than just waiting more before to go down again.

 

It seems to work this way: peeing every 25min in night is apparently happening at the same time as insomnia. The more I taper, the more the peeing (total times in a row). I thought peeing was disallowing me to sleep additionnally to insomnia, but even when it stops, it takes often one hour to be able to sleep so I think insomnia would block the sleep anyway. Tapering the drug make the sleep possible +X hours in the night, for example falling asleep at 3am instead of 1:30am, and also reduce the total hours of sleep even in the week-end (I had all the morning and I was hardly getting more than 1h30min from 7:15 to 10. At this rate it seems that it could go over the next summer.

[Bluewisp]

It seems stable since 2 weeks and 2 days, meaning I get most of the time my 5.5h of sleep per night which is my minimal point of tolerance. Here are the hours of sleep each night since I upped to 0.1875mg on Feb 18, to today:

7-7.5 (upped this time so it's normal to be above 5.5), 5, 6-6.5, 5, 6, 2, 6.5-7, 4-4.5, 6, 5, 5.5, 5.5-6, 5.5, 2, 5.5, 6-7 (last night + saturday morning). At 2mg at the start of January, I still had around 5.5-6h per night. It is possible that it could get better by waiting much longer, but I've no guarantee and summer is coming. I will not be able to bring a pot outside to mix 1L of water with the drug when I'm outside. And a prepared portable solution will not last long with heat. I would have to be housebound. Also, with the time it takes, I'm in sleep deprivation since November and my health is more and more unstable.

 

It could take months. So I decided to explore a new solution. To use a sleep drug to move the problem on it (because of course it will be the same problem but it will be limited to the sleep issue), and then, get rid of everything else (hellish other side effects). I know this forum doesn't recommended it and I rejected this solution until now, me too. But this situation could stay for months and I don't want to sacrifice my health for so long, nor my summer which is 3 months per year here. If I could take exactly the part of the seroquel that works on the sleep and find the exact same mecanism in another drug, I could switch, and possibily remove seroquel very fast. My point here is not to be freed, I know I will be bound to the new drug for sleep. The goal is to be slave of something much more simple, much less dangerous, and that will impact my health positively very fast.

 

Now for this to work I need a drug that act in a very similar way for the sleep mecanism, and a drug that has no other side effects, that has no psychic capabilities to destroy mental health as antidepressants and antipsychotics do, a simple drug that is limited to sleep. If such a drug exist, this is possibly my only way out in short term. I don't trust doctors really since they destroyed my life in first place, and now they are distraught and don't know what to do with my situation, so I would trust more people here that have real experience of those things to help me to choose the drug. This is not a random choice. I want something secure, I don't want to start a new hell. I will anyway see fast if it works or not and stop fast too if it creates issues or doesn't work. Does anyone know if this kind of drug exists?

[senseless]

Ok heres my opinion Bluewisp.

You are jumping from dosage to dosage like a madmen and in the process completely undermining the point of tapering. Which is to taper slowly and allow your body time to adjust to the decreases in dosages, this method is tried and true. Constantly changing dosages is most likely causing some form of kindling. 

I sympathise with your urgency to discontinue this drug, but im curious as to what hellish side effects you experience at these dosages?

Because i speculate that the negative side effect are far less at these microdoses as it primarily functions as a histamine receptor blocker (antihistamine) and α₁-adrenergic blocker. 

There is no shortcuts to getting of these drugs, the only solution is time. Adding another drug to the equation is just a band aid solution and in the long run you will be worse off.

 

[Bluewisp]

Thank you for your concern, senseless. You are right and wrong at the same time for side effects. There are several kind:

 

- Group A : those that were there always and that never go or diminish whatever the dosage is, until there is not a particle anymore in your blood

- Group B : those that were there always and diminish with the dosage

- Group C : those that were there always but worsened with tapering

- Group D : those that were not there at all and appeared at some dosage and that are limited to a window between dosages

- Group E : those that were not there at all and appeared at some dosage and worsened the more tiny the dosage was

- Group F : those that appear only with cold turkey

There is even more grouped with antidepressants, but I don't take them anymore so I'll not talk about them.

Group A: very slow digestion and burning stomach during nights that need a Tums sometimes. Processing sugar/fats in triple so getting fat easily if not having a strict diet
Group B: night anguish / oppression / terror. Very space feeling if taken one hour earlier or more. Stuffed nose one/two hour after the take. Easy panics one hour after taken it. Waking up choking in my own vomit. Dry ejaculation. Intense dehydration that stick eyelids during night.
Group C; full blader every 25min for at least 3 times in a row during night but often more and not every day. Slurred speech (gone very bad under 2mg). Sugar/fat/salt craving that worsen the weight gain
Group D; abnormal joint pain like if I was suddenly +20 years. Muscle weakness making it hard to just keep an arm in the air. Those were between 50mg and 12.5mg and are gone, but they were relaunched with less intensity with tapering, until they were not there at all further down. It's still got me a Naproxen prescription to control the pain and a start of action with an ergotherapist until to realize that something was very fishy.
Group E (those are my main concern right now): crazy sugar/fat/salt craving that got me take back 10 pounds since I'm at 2mg, and it's rising and I'm forced to eat fruit to not lose my mind by just blocking me to eat, and have the less bad sugar source as possible. Impossible satiety whatever the quantity I eat: I must measure my portions because the body cannot anymore indicate when I'm full (the more the tapering is big in term of milligrams between taper windows, the more intense is the starving so I can live with it now but from 12.5 to 6.25 I was thinking about using a med to kill my hunger because it was "hurting" bad). Solid insomnia in which I feel sleep disabled like on a lot of coffee that also has a strange power to boost creativity like never before (I'm writing a book). Totally crazy and abnormal libido that impair my work and my free time as well, making it very hard to concentrate and focus on anything until I'm satisfied, which last only for a little time and come back very strong all day long, needing me to "take care of it" several times per day to have some peace. I never talk about it because I will look crazy, because it is, people would never believe it. I've never been like that before! It started with the first tapering and worsened hugely, even between 2mg and 0.1875 it got stronger (I measure it by quantity of times I need to "take care of it" per day before to know peace and it always upped). It usually go away only after 3 weeks on the same dosage, where it becomes totally normal. But it starts going crazy again next time I taper, for another 3 weeks. You would even not believe how it takes my time and concentration away.
Group F: intense itching everywhere

 

Yes, I'm going fast. No, it's not recommended. But I saved a lot of life time by going down until I hit insomnia strong enough to have to wait. I could handle all side effects by stopping the drug right now, but insomnia cannot be dealt with and is the only thing that keep me there.

 

I've done some research on sleeping drugs, and aside antidepressants and benzodiazepines, there are the hypnotics. But reading the possible consequences is even more scary than antidepressants, like parasomnias, even anxiety/depression and mood changes, tired in the day... I will not do it. I'm damaged enough of zoloft and seroquel, I thought it would be without risk since people talk about sleeping pills like if it's aspirin, but apparently there is no innnocence in those drugs either. I'll stay at 0.1875 for a complete month and see if sleep change.

 

If you ever want to know why I'm in a hurry to live, those drugs destroyed the last 20 years of my life, making me to skip my 20s and my 30s of which 9 months remain. I wanted to live, now, more than ever before, but with the handicaping withdrawal it's complicated to conceive socializing with new people, and it would be already a challenge without the drugs. You can read more about it in my post "Emptiness" in "Finding meaning" section of the forum, if you want.

[Bluewisp]

I tried clonazepam instead of any other drug solutions to sleep, because I took it already long time ago and it has never done to me any harm except the memory issues. I slept almost immediately, and then I tried seroquel at 0.09mg. I also slept, and my nights were totally changed: always sleeping fast and for at least 6.5h and sometimes above. Then 6 days ago I stopped seroquel totally. I continued to sleep easily and still getting the same amount of hours. For my own story, clonazepam will be the ticket to freedom, but I was not expecting it to work at all. I have clonazepam since months and tried everything else before to take one. Of course I have another month of withdrawal to do, it's the last seroquel step but it still count as a level to go through, so all effects are back, like my muscle weakness, I can barely jog above 35 seconds or keep heavy stuff in my arms for a long time, and my back is also tired in my usual chair in which I work all day. Those effects were bouncing at every tapering but rarely this high. They appeared from 50mg XR to 25mg standard and diminished with other tapering. The end is near, and for real this time. I would not be surprised that I still cannot sleep for weeks or months and that I need clonazepam for this time, but I will try after a month to not take it.

[Bluewisp]

I'm seroquel free for 7 weeks now. However without clonazepam it would be impossible to sleep, it's because of it that I was able to go to 0mg. And even with it, I had to up it after a month, I'm now at 0.5mg and I started since a week to wake up at 5am and not be able to sleep at all again until 8am when I start to work. Almost all effects from the seroquel exposure are still active, mental and physical. Some are disapearring and restarting, up and down. I was not expecting it to be over so fast anyway... After 9 years at 400mg, I'm not surprised. Insomnia is of course still the most problematic, as the weight even if I eat not much, in a healthy way and do jogging every lunch time that it's sunny outside. A little pinch of sugar is sufficient to regain the few pounds that I take weeks to lose. I will try to not up clonazepam anymore. But I don't know when the seroquel mess will end in my body. It could take months I guess.

[Bluewisp]

2 months and one week seroquel free. I was able to not up clonazepam and I'm stuck to ~6h of sleep, sometimes a bit more, more rarely less. I think it will not be needed to up it anymore. I've still all the seroquel package:

- Slurred speech (inversion of syllables at very high occurence)

- Insomnia

- Disabled sasiety but the effect is much stronger in evening, meaning even if I eat too much a meal, I will still be feeling starving (really, like a 100% empty stomch for 8 hours), and for this I developped a feeling of the weight in the stomach to tell me when I have enough. I can't enjoy the natural thing like everyone to feel "full".

- Sugar/salt rages, which is a distinct phenomenon of being hungry

- Impossibility to lose weight or maintain it despite good habits and jogging 45min several times a week

- Rage mood still happen but rarely, is shorter and less intense

- Depression (light) can still be there for days (no specific reason). Very deep depression (lasting from a few hours to one day maximum that make me cry all day) is very rare now. Maybe one day per 2 weeks. Interesting to mention that tapering seroquel is the only thing on earth that made me feel a pure biochemical depression and a state of total despair/suicidal mood at a point that you can barely endure the passing minutes. Fortunately it was only for 2 hours, a few hours or a maximum or one day at a time but 70% of the time only a few hours.

 

Gone or almost:

- Muscle weakness seems to have disappeared

- Joint pain is ocassionally and I only use one naproxen per week, which solve the inflammation at 95% for 2 or 3 days, everywhere

- Very slow digestion: seems to have gone at 80%. Meaning I can eat ketchup and some salad dressing without having a full stomach up to the night.

- Anguish/night horrors: totally gone. Same as for depression, nothing in my life made me live those terrific states of mind, even returning to childish fears like feeling a presence under the bed or in the hallway. Nothing on earth ever given me this before, and those are gone when I reached 2~4mg. I still have anxiety rushes sometimes, manageable, and it's probably mostly my natural self. I always had anxiety cycles, and social phobia, which are totally different of phenomenons of terror on seroquel. However I'm more sensitive to cafeine during my anxiety cycle than never before in my life. Out of a cycle, I can drink cafeine a week, without an issue. But inside, just one can trigger an adrenaline rush 5-6h after taking it.

- No more wake up choking in my own vomit, which was linked to the very slow digestion.

- Light dehydration, no more sticky eyes during night, no more dry ejaculation

- Urinary retention is totally gone. It was an extreme worry and a real handicap.

- Peeing all night is gone. It seems there was a link between seroquel and diet 7up (because it never happened before seroquel). Tapering was worsening considerably it, so I know it was not natural. I avoid 7up on evenings now, just in case, and I removed it totally to help the weight, which make no difference.

 

I'm zoloft free from 2018 too, I just mention it, because the main unbearable thing was sweating like a pig which was killing totally any pleasure in summer life in particular. I sweat like a normal human now! Now I have to deal with a psychiatrist that think that all what I mentionned is imagination, placebo, or anything else but the meds. But I don't lose my time anymore to try to convince him. I predict that it will take months before to be totally freed of biological transformations that seroquel has done in 9 years. So technically, even at 0mg it's not over. I remember what they said to me in 2010 before I take the first pill. "Don't worry, it will not do anything, nothing will happen. It will not change you." Wow. They know what they are talking about right? They even never warned me about any withdrawal spent on a year, and now I still need months and I don't know what will go or be permanent. It will do nothing they said...

[Bee5]

Hi @Bluewisp,

Thank you for this post about what happens even after the jump to 0mg. Out of interest, have you been able to stop the clonazepam? 

[Bluewisp]

I'm in the middle of a moving in another appartment. I've not being exhausted like this since 10 years + so I skipped clonazepam thinking it would never be necessary. But seroquel's damage is continuing. I felt that sleep would never come. I took it, but it takes one hour to work. I only slept 5h this night. But some things seem to vanish slowly, aside the sleep. But yes I'm still taking it, it's the safest and only way for me to sleep.

 

Let me add some other interesting things that happened.

 

I had 2 months ago a random episcleritis in the right eye, that lasted several days before to vanish. Doctors were not able to find the cause, so it may be some part of the withdrawal process or not. But with time, I used to suspect the recovery process for every weird things.

 

One month ago I had a hyperphonia, totally random again. Just to be clear, I'm never sick, I have no alergies, I've a very good biology (except that it cannot deal with drugs). So, suddently to hear sounds so loudly, was very scary and again, doctors were not able to find the cause. It took 2 weeks to subside, diminishing slowly. It started one day at a beach, a place I go all the time. Waves were unbearable to hear. Having any headphones were impossible unless by blocking my ears with cotton to diminish the sound. No other symptom, no signs, nothing visible. It is very possible that the part of the brain that are recovering and have caused this, like a temporary glitch.

 

Then a very good new. You may remember I talked about an extreme heavy libido that started slowly from 200mg and took proportions out of control as I was approaching zero. It was impairing my life a lot and caused physical colateral damages, as well as psychological distress even if it has not affected anyone else, and that no one noticed (thanks to teleworking). Physical issues were for example, the heavy pain like a pinching that I spotted to be probaly the seminiferous left tube, as it is the only thing that passes through this spot. This pain was sometimes a real hell but short most of the time. ~5 weeks ago,  my libido started to fluctuate. I was able to measure clearly the difference. Some days, it was back to normal, and those days were not common. Weeks passed, and it became more and more common. Even in different days, it was not so heavy as it was for months. Today it is almost normal. So it took near 4 months for this to be repaired after being on 0mg. But it is clear that it's ending! And the progression was exactly as they describe the withdrawals: drawbacks, but more and more normal days over the time. I know that a high libido seems a good thing but imagine anything good in this world to be exagerated so much that it becomes a problem, and you will understand how bad anything good can become. I was not able to talk about it, I would have looked crazy. It was overwhelming my mind and there was no way to get rid of it permanently.

 

The infinite hunger is still there. Mostly during evenings. I can't feel full nor satisfied. I hope that it's only a question of time for this to disappear too.

[Bluewisp]

I add today that I tested alcohol several times since the last 3 weeks. Nothing massive, I never liked massive drinking. But I tested shooters, more heavy alcohol to the more simple beers. From my 17 years old, drinking was always doing awful things combined to paxil/zoloft, then after from 2010 it was even a total new nightmare with seroquel: heavy anguish and panic in the next hour, choking, gasping for air, intense suicidal state of 1 hour and more moderately was putting me in a 24h depression while of course nothing in my life was changing and explaining the sudden difference from the day just before where I was feeling fine. I can say that my tests in the last weeks were scary. But I can say it: for the first time since 2000, nothing happened, at all, with strong or light alcohol lately. Even when I'm writing right now, I have 2 beers in blood when one is enough to make me go in hell usually. So I'm freed from another psych med chapter: I can drink safely. It was probably the case before since I stopped seroquel in March but it was only recently that I dared to test.

[Bluewisp]

Although the 3 remaining damages from seroquel are persisting, they vary, their frequency diminished, their power too, but I have full blow relapse of them from time to time, which is a thing I was expecting. From them, it's insomnia, of course. I'm back from an appointment with my doctor, who still denies that seroquel has to do anything with those 3 observable, measurable effects, and also too weird effects to be mistaken with any other medical condition. This is why his plan is to simply ignore 2/3, and for the insomnia, to have a healthy sleep hygiene... Same song, for the 50th time. So that's why he is reluctant to use clonazepam to sleep. My action is based on:

- I was never dependent of clonazepam in the past, and I stopped it easily. I know it's uncommon, but it was my case, so for me, the choice was "safe"

- I knew it would make me sleep, and it was less dangerous than hypnotics, for example

- I knew it would cause short memory term issues but this was still less risky. I absolutely not plan to use it forever. The less possible, the shortest as possible.

- I know it will not create a dependence for sleep like seroquel caused or hypnotics cause (it's my belief, I've no proofs but I never had insomnia from having stopped clonazepam in the past)

- I know that whatever I say, seroquel will never be judged guilty, nor as any other psychiatric meds for my issues, even with all the evidence, so I don't even try to argue with doctors anymore. Their conclusion is biased because the causes of my issues are chemical, not pathological (for the 3 symptoms). So somewhere, you have to take your health in your own hands.

- Alcohol is raising my sleep hours of +1~2h, so I go from 5.5-6h to 7h pretty easily. Alcohol works on the same stuff than clonazepam, so my theory is: more clonazepam should cover the gap, without needing alcohol

- I deliberately manipulated doctors a bit, to achieve this result: saying you want to stop meds for effects/worries/damage, will never work, because whatever you get, they consider it a tiny pain, don't recognize it, and they don't recognize as well the withdrawal hell to exist. So for them, there is no risk, only benefit, that's why they add it to any therapy very easy to new people. They are not evil, they just don't know. You have to be smart. I said I want to stop them because I had therapy and I moved a lot forward, discovered my inner strength, freed myself, I got over stuff that meds helped while I could not, which is all true in some proportion, BUT, what I hide and is responsible really for being free and going better, is that my issues where caused 80% by the drugs. They created new and bigger problems. So this is an acceptable decision for doctors, and they go the way I want them to go.

 

Patients have no way to be heard, because they are patients, and by definition, a "Mental" patient can have everything possibly in the DSM so everything said is interpreted in their way to fit in something, you have plenty of choice: paranoia, anxiety, exaggeration, mythomania, complotism, which of course can be sometimes true for some people. But they expect it from everyone, especially if what you say don't fit what they learned. And the only source of data about meds, is coming from who is swallowing them, the same that cannot be taken seriously from doctors. So as long as they don't swallow it themselves, data is already invalidated at the source and interpreted at the flavor they "feel" it to be.

 

The day when doctors will try their own drugs, they may have a very difficult time to accept their responsibility for the lives they have potentially destroyed. While it can be extremely complex and hard to prove, it's still can be the truth for a lot of people.

[Bluewisp]

Almost one year passed since the last dose of seroquel. I now understand better the symptoms that remains. I can't still sleep without clonazepam, but insomnia is still there because clonazepam has a short effect only, it allows to start sleep instantly, but will not work 4h after. So when I wake up to go to the washroom, I will likely not sleep anymore. But without clonazepam, who know how shorter it would be. It was taking hours to sleep before. Unfortunately clonazepam will probably impose its own insomnia when I will lower it later, but I think it will be manageable probably easily. I've understood that insomnia is hitting by windows, and is not a constant thing 24/24. By stopping seroquel, it was. Then after, it decreased in several long windows of sleep denying. That's why I felt the huge sleep deprivation only sometimes during the day. Sleep was possible only in those holes. After a year it becomes obvious that those windows got shorter. I had less and less interruption after the washroom break at 4-5am (able to re-sleep), even not one this last week. During the week end it was the same. I tried sometimes to sleep up to 11am, but I was still having a 2h of denying in a row. The "deny windows" were 3-4h, now I feel they are maximum 2h and the frequency also decreased. Mapping which hours is not possible because the body has its own easiness at some natural windows that we impose by habits. So it's mixing with drug imposed windows, but I think they are more random. That's why I try to respect the natural window because already alone, it could be harder to sleep outside it. I think clonazepam counteract the start-sleep mecanism that is blocked but it takes 1h to really work, so even if I would take a dose at washroom time in the night, I would lose at least one hour of sleep before it hits. Plus, it would need an upping of the dose and I don't want this. So I tried 0.5 to sleep and 0.25 later. But 0.5 was not working...So I gave up the idea. Those interruptions seems to end for soon anyway. I record my sleep time everyday to keep track.

 

Infinite hunger symptom shortened too but still happens on evening meal time. It's not aggressive enough to really suffer, and I got used to feel my stomach weight to know if I'm full instead of relying on satiety feeling. But it seems that this satiety feeling is linked with time. When we eat, we need a time to feel it, naturally. It appears that seroquel damaged this detection by slowing the process. In other words, it still work, but need hours to detect it. Since I was having the time to be hungry again after those hours, I was still feeling hungry so I thought it was permanent. But along the last year, this detection became shorter. For now, it takes 2 hours or less to feel satiety. For example, I will feel less hungry and progressively full 1-2 hours after a meal. My expectation is that it will continue to take less until to get to the natural point of feeling it right after the meal.

 

Abnormal high libido caused me life troubles, but follow the same pattern: shorter windows, and decrease of frequency of windows. Like explained for symptoms on the forums, sometimes it feels a rollback, but in long term everything decrease. It's already far from how crazy it was one year ago.

 

Slurred speech is still there. I had no longer fat craving (cream, ice cream, yogourt, anything creamy), but I have salt craving. I seek fish, chips, instant soup, anything with salt so I choose the less damaging like instant soups and popcorn with no butter, that is much better than chips of course. Right it's still salt and itself it's not healthy, but it starts late in evenings and become an obsession.

 

My body is still weak but mostly because of more than a year of sleep deprivation. I feel a bit stronger while the sleep is approaching 8h so I also expect this weakness to disappear soon. So overall, I now have a lot of hope to get a normal life back.

[ChessieCat]

Thank you for continuing to update with the details of how things are going for you.

[Bluewisp]

My main struggle is still insomnia.

Typical nights: clonazepam makes me sleep right away (10-15min, most of the time), I get up to go to washroom and I may not be able to sleep again (random). When it happens, it can take 1-2h before to work again. When I need to work soon, my alarm anxiety may also block me to sleep again so it's a mix of both, depending of the hour. The more I wake early in the night, the more chance I have to sleep again since I never wake up if I must not go to washroom. I even tried to use a bottle to pee to avoid waking the body by walking, doing as fast as I can, but it had no impact.

Interruptions diminished during the year. They are rarer, and shorter (I can sleep after 1h most of the time, not 2h like it was before).

What I thought: clonazepam helped sleeping right away and diminishing interruptions. That's why I upped the dose to 0.75mg in 2021.

What reality seems to be: it works for sleeping right away, however I doubt it affects interruptions, as its effect seems to be over after 4-5 hours. Proof: I dropped 0.75mg to 0.5mg with no effects on interruptions and there are less, several months after, gradually. So 0.75mg probably never done anything much compared to 0.5mg.

I tried one day to use half (0.25) clonazepam during morning to sleep longer and outside midnight-8am range. It failed, and next night it has also failed while usually 0.5 works from midnight. So 0.25 doesn't work well as 0.5. Is it from benzo withdrawal? Since I stopped the same in the past and doesn't remember insomnia, I don't think it's from it. However, agitation/anxiety is certainly from it, with counteract sleeping itself indirectly.

 

Since it's useless to use 0.75, I stayed with 0.5 since August. I had no noticeable side effects by doing it. I want to remove it as fast as possible so I tried 0.25 sometimes. Observations with 2 tries with lot of space between tries:

- Able to get a 7h the first night at 0.25 but very agitated and disturbing state and needs at least 1h to sleep. It's not at all a normal state of mind.

- Doesn't work the second night in a row: take 2.5hours to start sleeping and very hard to sleep deeply (it never take above 15min usually).

- I mention that before seroquel in 2010, I was always a fast sleeper, and whenever in the day, as other members of my family.

- Test of 0.25mg was after a week-end of hiking and biking. Added to sleep deprivation over time, it has no chance that I would not just fall asleep right away if nothing was blocking me.

 

Since I can sleep 7h, sometimes 7.5 and even 8h, my life is more stable, however I worry staying on a benzo for too long. My short term memory is already affected, like in the past (common words disappear from my mind and reappear after 1-2 minutes. Same scenario than in the past. It took 2-3 years in the past after 0mg to get rid of this).

I'm still disturbed by feeling starving after a big meal, for 2h, then the signal of being full start to kick in. It's still present. No doctors or pharmacist understand, like if it was never seen before. I think it was seen but just badly expressed by patients. i.e. "always hungry" general definition that we see in side effect lists, which is totally a different thing. I'm not always hungry at all.

Still have salt attacks. I need to eat some. Years ago it was fat, cream, but now it's salt.

Slurred speech still present, and some days stronger. I interpret it as a derivation of speech issues as it's reported in research for antipsychotics. I was always a fluid talker before.

I'm getting 41 soon so it becomes hard to distinguish what is coming from withdrawal and from sleep deprivation, and from age itself... But I can say for sure that I still get rare spasms from the zoloft era, as long as subtle restless leg syndrome beginning but not enough to start really. They are zoloft things that are still seen and it's over since 2018...

My muscles have still bad endurance, but I'm still able to do hiking (3h) and biking (27.34 miles) with no real issue. My shoulders are more complaining of my backpack than my legs.

 

What's next: 0.375mg instead of 0.25 (3 third of a pill) and trying to mix valerian root extract in another test. The best would be to move the need of clonazepam on a non dangerous one but I doubt that any natural meds will unblock what seroquel damaged. I think it will only help reducing clonazepam faster, at best.

[FindRest]

From looking at your signature, it appears that you have been using clonazepam since March, 2021, is that correct?
 

It doesn’t take much time for your body to become dependent on benzodiazepines, and they must be tapered slowly and carefully. Abruptly raising and lowering the dose by 25%-50% can lead to a destabilized nervous system and a lot of withdrawal issues. Even though you may not have had a problem coming off it quickly in the past, that’s no indication that it won’t cause problems now - especially with a sensitive nervous system from discontinuing other psychiatric drugs. 
 

You might want to reach out to a moderator to discuss this before changing your dose again. Some of the symptoms you mention in your last post could very well be from the changes you have made in your clon dose. For the record, clonazepam is a very potent benzo (.5mg is not a small dose).

 

Also, adding Valerian root to the clon can complicate matters.

 

I’m not a moderator, but I am concerned and would hate for you to unwittingly cause yourself some extra trouble. And, I may have misread some of your previous post. Just wanted to pass along some of my concerns.

Edited November 1, 2022 by FindRest

[Bluewisp]

Thanks for your concern @FindRest but let me recap the biggest issue here: insomnia. It harms my health since 2-3 years now, and comes from seroquel post-damage withdrawal. Permanent or not, I don't know. I decided to take a benzo only for this, because my sleep hours were reduced to 3-4h per night. I safely got away from clonazepam in the past with no issues and I remembered it's sleepy effect and decided to test: it worked, and continue to work. However I've seen that 0.5 is enough. I took 0.75 for a while, but it's useless and I got no issues to reduce to 0.5. Sleep stopped to work from 0.25.

 

My concern is not the withdrawal except if this implies withdrawal induced insomnia, which is a thing I never had with it in the past. Also, 0.75 to 0.5 doesn't induced insomnia, so I assume that from 0.5 to 0.25 the insomnia is because of seroquel post-damages that are still there, and 0.25 of clonazepam is not enough to fix it.

 

I have no issues on clonazepam but it has dangerous memory issues for long term, that's why I want to slowly replace it with something else, but I don't have anything less risky than clonazepam or something that actually work. By risk here I'm talking about my mental health in the present. Hypnotics could create new sleep issues, anxiety disorders etc. The only one thing safe was a benzo from my experience even if I know it's a nightmare for a lot of people. Valerian is to replace clonazepam, not to boost it. If it could work, I could stay on it and slowly replace clonazepam completely by it. But I was not able to try for the past weeks, due to hour change that could break the test, and overtime work during a night that broke me completely.

 

Melatonin was tested but it was full replacement so the test was not efficient, and I really hated the mental weird effects. It may be natural but not in one shot at this dosage. So aside those natural stuff, if they fail, I only have clonazepam. If it fails, I will probably reduce it until sleep stops to work, then I'll wait a dose upper. I tried 0.375mg and sleep still worked with no side effects, but I lost my pill cutter and it's a pain without it so it will go to next week end.

[Bluewisp]

Hi

 

I use clonazepam for sleeping, countering seroquel withdrawal that removed mostly all sleep of my life. A decision chosen by myself, understanding the risk of dependence and a future withdrawal, as I already removed this drug in the past without much issues. I sleep in 15 minutes maximum, however, when my bladder wants me to empty it, clonazepam cannot do anything to make me sleep again right after, like if it doesn't work above 4h. Sometimes I can sleep back, sometimes it takes 1h, or 2h. More clonazepam changed nothing so the temp raise was short and useless and I got back to lower dose immediately. I only wake for my bladder, never otherwise. It means, every 4h in average.

 

I plan to try using valerian right when I wake up to see if it could help sleeping back, as it hits pretty fast. Now is the technical question. I know that valerian interacts with clonazepam. But I'm not worried about side-effects interaction, more about drug power. I see 2 scenarios:

- Valerian causing drowsiness, add to the drowsiness of clonazepam, but only side effects are added together, the drug stays at the same dosage: it doesn't do anything more powerful globally. i.e.: the dosage stays the same.

- Valerian modify the drug potential, upping its dosage and every consequences with it.

 

So what it does between those 2 scenarios? I'm interested in the first. I don't want to up clonazepam in any way. If "interaction" here means only boost of drowsiness, I would be very glad to test it and I would feel safe to do it. Otherwise, I would not risk it since more clonazepam will not help and will only get me a longer withdrawal the day that I will want to remove it. Thanks.

[Thorin]

Have you tried low dose CBD:THC?

[Bluewisp]

3 years and 8 months passed since I'm at seroquel 0mg.

Still have abnormal hunger even after a full meal but I got somehow used to it. Still have waves of hyper libido and still have speech articulation issues. I feel weak but it could be my age, I'm about to be 42, so I guess I need exercising, but I was also vitamin D deficient.

For insomnia I don't know since I still take clonazepam but I'm blocked usually to 7h of sleep per day and still had occasional interruptions after 5-6h so I guess it's not over too.

Knowing how benzos are dangerous for long term, I finally decided to switch slowly from clonazepam (now at 7/8 of 0.5mg) to lemborexant 5mg. This one stopped sleep interruptions, but make me feel more tired in evening. Maybe because it gives back to my body the normal sleep feeling and I don't sleep more than 6-7h since 3 years. I was too afraid to try hypnotics 2 years ago.

I'll drop clonazepam to 3/4 of 0.5 this week end. I took weight, lemborexant is not supposed to do this, maybe it's food, I'm not sure.

 

I've also concluded my last visit for life in a psychiatrist office, ever. My family doctor will be able to provide prescriptions for what remain of this journey.

I confronted the psychiatrist to the effects I still have, as I see them as post damage from seroquel. He denied everything to be related to the drugs, and said that the only thing to do is have a healthy lifestyle. It will not give my normal speech back, a normal libido back, normal sleep back, and the right to feel full after a meal. But as usual it's psychiatry nonsense. He said nothing has shown in research that those symptoms can be related to seroquel except the speech issue but it's during the intake of the med, not after (it sounds even more obvious that it's coming from it, after or not). He denies it even if I clearly got the whole package at the end of withdrawal, and also lived the same thing in the missed tentative of 2013 and things were back to normal when I had restarted it. Anyway, I know, drugs culprit or not, there is nothing to do.

 

Thanks to this community that helped me more than any of those doctors, and taking control of my life was for me the real freedom. The only mistake was to start those drugs at 17 years old, but I was too young to understand, and doctors have done what society expect them to do. I cannot blame anyone for the start, but clearly no one listen to you even with evidence and numbers. I will of course post later, until I end all those meds for good. The least I can do is to make my past useful to someone, and hopefully to save life time to someone.

[Bluewisp]

Hi all

 

I've an update. I'm totally off clonazepam since 3 weeks now, with no major issues. I was at 0.5 and never got over, and it was used to sleep, even if I know it was not the best decision. I dropped dosage of 1/8 every 2 weeks, with minor difficulties, sometimes bigger but nothing staying really long. I use 10mg of lemborexant to sleep since 5 was barely getting me above 5h, and it also helped for the withdrawal to avoid insomnia rebound. When clonazepam insomnia effect will be completely out of the view, I really hope to lower lemborexant and sleep, because I got weight even if they say it's not supposed to, and it also provoke depression (one day without is a really different day). Skipping a dose has not done anything bad though, which is a good new. I'm still having difficulty to sleep above 6h but it happens more often than not those days, maybe because I left clonazepam for good. In any case, I'm closest than normal nights more than never before, I have normal dreams, and when I get 7h sometimes, I feel solid enough for all the day. But I get also 7.25h, 7.5h, and in more rare occasions, 8h. I'm writing hours of sleep on my calendar to track progress.

 

Thanks for people that helped me. And also I apologize if sometimes I've not followed advice at 100% during those years, sometimes I was too fast. But I think everyone that has gone through med hell can understand that we might try to end all this as fast as possible, sometimes trying to push balance and test if we are losing time or if the waiting is really necessary. The aftermaths of quetiapine on 9 years are not over even if last dose was in 2020, but I guess I just have to learn to live with it. War leaves marks, and at least I'm still alive and almost free, which is the most important.