Flippy

Flippy

Felis Sapien
Jan 5, 2020
931
Hi everyone! Sorry for a rather long rambling post, it's 4:30 in the morning here and this is driving me crazy...

I take Quetiapine for bipolar disorder. I have taken this medication since I was first diagnosed and found it worked incredibly well for me for quite a long time after I reached the right dose.

Other meds were added in recent years and things aren't so great taking quetiapine right now. It's the only med I take now as the SSRIs I was given made me like a particularly jumpy cat on a very hot tin roof being shot at with an Airsoft gun. I was also on procycladine which helped somewhat with restless legs but resulted in excessively dry mouth and throat besides other things and I would often wake up choking.

After my doc decided to switch me to immediate release quetiapine I started experiencing rapid heart rate after taking my dose of 400mg, I also got short of breath. My heart rate was as high as 170 BPM while at rest indicated on a pulse oximeter.

Eventually they switched me back to extended release and things improved. Historically quetiapine had always had a sedative effect, an hour or two after taking it I would be in the deepest sleep! Now when I take it, the opposite feels like it's happening, my heart rate increases rapidly, I get horrendous restless legs and the sensation eventually envelopes my whole body. Absolutely no chance of sleeping while that's going on.

The thing I find most strange is that the effect this med seems to be having feels more like some strange stimulant. I get this feeling like I'm becoming a bit manic. Like I'm full of energy like I could go and breeze through things I've been neglecting around the house, my mind is racing, but at the same time my body feels tired, like it's constantly on the verge of crashing out asleep exhausted.

It's a very unpleasant sensation. Also I have this horrible sensation like my tongue makes weird movements when I'm finally about to sleep and it's like it's pushing to the back of my mouth feeling like I'm going to swallow my tongue, even though I know this is virtually impossible.

My sleep pattern is terrible or more aptly, completely random. I also get this kind of buzzing feeling throughout my body when the symptoms are at their worst, though o can still experience this randomly throughout the day. I get spasms and really bad dizzy spells that cause confusion (aphasia like mainly but also jamais vu), I get a central vision blindness and shimmering colours in what's left of my central vision and can hear blood pumping in my head like waves pounding onto the shaw at the beach.

I can't sleep if I don't take quetiapine, but ironically I can't sleep until hours after taking it either and I have to endure all that shit :-(

Has anyone else experienced these sorts of things particularly when they had previously found quetiapine helpful in the past? I'm being driven nuts by this. I really do wonder if I have a physical condition that doesn't jive with the quetiapine or if the med was perhaps keeping something else in check that it no longer can!?
 
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BeyondGoodNEvil

BeyondGoodNEvil

Member
Jun 22, 2020
94
yeah those drugs work wonder for my sleep
whats your current dosage now
you once took 400mg and they were the quick ones which is actually alot
maybe try readucing the dosage whatever your on right now
cause im remember once taking 200mg which was double of my dosage at the time and it made me feel uncomfortable calm felt like being lazy but actually want to do something.
anyways i have been prescribed 125mg now but im taking 75mg and plan on dropping it to 50 mg coming weeks.im not feeling any withdrawal symptons as of yet but they still help me with sleep.
also take them before you go to sleep idk where i heard but some take during the day which i dont think is a good idea.
 
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Flippy

Flippy

Felis Sapien
Jan 5, 2020
931
yeah those drugs work wonder for my sleep
whats your current dosage now
you once took 400mg and they were the quick ones which is actually alot
maybe try readucing the dosage whatever your on right now
cause im remember once taking 200mg which was double of my dosage at the time and it made me feel uncomfortable calm felt like being lazy but actually want to do something.
anyways i have been prescribed 125mg now but im taking 75mg and plan on dropping it to 50 mg coming weeks.im not feeling any withdrawal symptons as of yet but they still help me with sleep.
also take them before you go to sleep idk where i heard but some take during the day which i dont think is a good idea.
Thanks for your reply! I'm still on 400mg but I'm on the extended release version now after a year and a half of torture on the "full fat" version.

If you don't mind me asking, do you just take it for sleep or something else? Don't feel obligated to share anything you are not comfortable with though :-)

I'm a little worried about reducing the dose as I worry about having the crazy come out again and potentially wreck what is left in my life. Or on the other hand falling into the worst depression I've ever had and being firmly in ctb territory once more :-(

I'm not entirely convinced that these side effects are due to the medication not working. I feel like there may be some as yet unidentified factor that's muddying the waters so to speak. If that makes sense?

I worry that if my medication gets changed it could mean my condition isn't managed at all. To be honest I would stop taking it tomorrow if I could. I've lost faith in doctors and I hate being tethered to this chemical.

I just don't want to potentially be playing russian roulette with my mental state if what is going on is down to something else going on. I've had some out of whack blood tests and ECGs over the last year so it's a question of is my physiology causing these issues with the quetiapine or is it the quetiapine causing the physical stuff?
 
BeyondGoodNEvil

BeyondGoodNEvil

Member
Jun 22, 2020
94
Thanks for your reply! I'm still on 400mg but I'm on the extended release version now after a year and a half of torture on the "full fat" version.

If you don't mind me asking, do you just take it for sleep or something else? Don't feel obligated to share anything you are not comfortable with though :-)

I'm a little worried about reducing the dose as I worry about having the crazy come out again and potentially wreck what is left in my life. Or on the other hand falling into the worst depression I've ever had and being firmly in ctb territory once more :-(

I'm not entirely convinced that these side effects are due to the medication not working. I feel like there may be some as yet unidentified factor that's muddying the waters so to speak. If that makes sense?

I worry that if my medication gets changed it could mean my condition isn't managed at all. To be honest I would stop taking it tomorrow if I could. I've lost faith in doctors and I hate being tethered to this chemical.

I just don't want to potentially be playing russian roulette with my mental state if what is going on is down to something else going on. I've had some out of whack blood tests and ECGs over the last year so it's a question of is my physiology causing these issues with the quetiapine or is it the quetiapine causing the physical stuf
sort of the same as you im bipolar but they say i have mania depression but in the broad sense its the same
i told them i also have sleeping issues so they prescribed that medication instead of going typical stuff like xanax
you see the problem with these meds is that the longer you use them the more your body gets addictive to it
and to way combat that is you up the dosage.BUT this also creates the problem of experiencing
withdrawal symptoms which you probably experienced high blood pressure and nausia.
The best way i found to use them is to keep the dosage low as possible and if your mood hits low then up the dosage then
for example say you take 400mg now.so what you wanna do is reduce it overtime say go by strimming 50mg each week so in a month time youll be taking 200mg.But then something bad happend and your feeling bad.Then you go back to taking 400mg.But once you start feeling a bit better then go back to strimming the doasge.dont jump right back to 200mg start from 400mg.Keep lowering doasge as long you feel no negative symptons
 
Flippy

Flippy

Felis Sapien
Jan 5, 2020
931
Hmm, that is a tempting suggestion! :-) Interestingly, there is one thing that I didn't mention in my initial post, when I take my meds after about half an hour I get a super low rapid drop in mood. If I don't take my meds, it doesn't happen, in fact my mood tends to rapidly head north, but not get too out of hand as far as I can tell.

I haven't taken my meds so I've been wide awake through the night.

The problem I have is that I can't get my dosage changed without going to a psychiatrist here in the UK. I can't break up the pills as it basically changes them back into fast release versions. I really don't want to go near a psychiatrist for basically the rest of my life if I can lol!
 
BeyondGoodNEvil

BeyondGoodNEvil

Member
Jun 22, 2020
94
if i stopped taking my meds now i become like a manic full of energy but i get insomnia and serious
nausea ended up puking.You may feel good for one day but for the rest of days you will start to feel shit.so i advice to keeping taking the meds.
idk you should consider lowering dosage you have to talk to doctors about it i guess
can you talk to the pharmaceutical about it ask them if they can give you smaller tabs like 50 100mg
tell them you want to gradual reduce dosage as its giving you bad side affects?
They wont swap your meds cause youll get withdrawal symptoms.
 
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Flippy

Flippy

Felis Sapien
Jan 5, 2020
931
So it seems that your experience is similar to mine if you don't take it for a day? Well that's quite reassuring actually, thank you! That actually might score another point for my theory that is not my meds that are causing the problem, it's something to do with my physiology since not taking them produces a similar response.

Sadly I once asked the pharmacy to just give me two lots of 200mg when they didn't have the 400mg available and they said they had to give me exactly what is on the prescription. If it said 400mg taken at night then they could but as it says 400mg of a some crappy generic quetiapine, that's what they have to give me. They may have just been conning me I guess.

I guess I could have a word with my doctor but it seems that they can't do much without the say so from a psychiatrist. It's a bit of a catch 22 I suppose :-/
 
Kattt

Kattt

Ancient of Mu-Mu
May 18, 2021
800
During inpatient detentions, I met countless people on quietapine and not a single one had anything good to say about it. Can't say more without breaking confidences
 
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Flippy

Flippy

Felis Sapien
Jan 5, 2020
931
During inpatient detentions, I met countless people on quietapine and not a single one had anything good to say about it. Can't say more without breaking confidences
It seems a lot of people who have taken Quetiapine agree with you! I seem to have been somewhat of an anomaly in that when I first started taking it, it was overwhelmingly positive for me. I didn't seem to get the brain fog on the extended release version and it was as if my mood just never drifted low enough to cause severe depression. If anything I was always in a high or hypomanic state. It was quite wonderful in hindsight. I really miss it.

I don't know what changed, though at some point a few years ago I started getting sporadic issues with my heart rate and breathing an hour or so after taking quetiapine. This also coincided with some issues obtaining my meds as the GP prescribed a specific generic called Zaluron which was almost impossible to obtain leading to me being without my meds for as long as a week sometimes. This is also when I started to get horrible restless legs and joint pain.

I have, it seems some issues with my physical health; issues with my blood and heart. I don't know what has caused what but I do wonder if my metabolism has changed fod some reason and my experience of this med now more closely aligns with the sorts of experiences you are familiar with :-(
 
Sherri

Sherri

Archangel
Sep 28, 2020
13,794
When I took it, I had horrible nightmares for the first 3 nights, felt lethargic the next morning. Was more like a chemical sleep so I stopped after a few days.
 
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Flippy

Flippy

Felis Sapien
Jan 5, 2020
931
When I took it, I had horrible nightmares for the first 3 nights, felt lethargic the next morning. Was more like a chemical sleep so I stopped after a few days.
I'm sorry it caused you to have such an unpleasant experience :-( I guess I would describe my first night on quetapine as a chemical sleep too. But one that I perhaps needed, as I think I was heading towards the high state at the time. I remember I wasn't sleeping much and thinking I had a good enough handle on things, hoping that they wouldn't persuade me to take lithium. I went to the second assessment with the psychiatrist hoping that I could just get by on antidepressants and the psychiatrist pointed out that my speech was pressured and I was going off on tangents often. I think as I was finally having some symptoms of hypomania I didn't want it to be flattened out with medication as months of depression was horrible.

Anyways, when I woke up the next morning after taking quetiapine for the first time, feeling calm and less like I had a rocket up my arse, I suddenly clicked that it was far better to feel like that as much as possible. Being high had the potential to take me to some great places but also some pretty bad ones, and in the end I would always go hurtling back into deep depression.

This medication felt like the best possible course of action. In the end it was almost better than that as for quite some time I had the drive, energy and focus I could get while on the high side but it never got out of hand. And strangely the side effects were minimal. These days it's the complete opposite :-(
 
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Sherri

Sherri

Archangel
Sep 28, 2020
13,794
I'm sorry it caused you to have such an unpleasant experience :-( I guess I would describe my first night on quetapine as a chemical sleep too. But one that I perhaps needed, as I think I was heading towards the high state at the time. I remember I wasn't sleeping much and thinking I had a good enough handle on things, hoping that they wouldn't persuade me to take lithium. I went to the second assessment with the psychiatrist hoping that I could just get by on antidepressants and the psychiatrist pointed out that my speech was pressured and I was going off on tangents often. I think as I was finally having some symptoms of hypomania I didn't want it to be flattened out with medication as months of depression was horrible.

Anyways, when I woke up the next morning after taking quetiapine for the first time, feeling calm and less like I had a rocket up my arse, I suddenly clicked that it was far better to feel like that as much as possible. Being high had the potential to take me to some great places but also some pretty bad ones, and in the end I would always go hurtling back into deep depression.

This medication felt like the best possible course of action. In the end it was almost better than that as for quite some time I had the drive, energy and focus I could get while on the high side but it never got out of hand. And strangely the side effects were minimal. These days it's the complete opposite :-(
Sorry you are going through that, I'm weaning off benzos, it's not been a nightmare but it's so hard to sleep, my shrink gave me so much crap to try , I dont remember the name of this particular medication, but when I woke up, I started to stumble on things and had a speech impairment for a few hours. I was like, never again, I felt like a trial Guinean pig with so of his trials with me. Everything like ambien and stuff, I can take 10 and still be awake. It's sad to reach this point. Hope you feel better soon, a big hug.
 
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Flippy

Flippy

Felis Sapien
Jan 5, 2020
931
Sorry you are going through that, I'm weaning off benzos, it's not been a nightmare but it's so hard to sleep, my shrink gave me so much crap to try , I dont remember the name of this particular medication, but when I woke up, I started to stumble on things and had a speech impairment for a few hours. I was like, never again, I felt like a trial Guinean pig with so of his trials with me. Everything like ambien and stuff, I can take 10 and still be awake. It's sad to reach this point. Hope you feel better soon, a big hug.
Thanks :-) It seems like you've been having a hard time with meds too! Benzos can be so helpful but I know they can be tough to quit :-( The other medication you mentioned sounds rather horrible! I wonder if it was a beta blocker as they can make you awfully dizzy!

But I can relate! Like you I can take fistfuls of over the counter sleep meds and they bounce off me like shooting bullets at superman. I hate taking prescription sleep meds as I suspect they might mess up my mood and also I build up a resistance. The first night I take zopiclone for example is wonderful! The second just feels like I time warped into the future. Then after the 4th of 5th time if I'm not asleep in half an hour it ain't going to work.
 
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Sherri

Sherri

Archangel
Sep 28, 2020
13,794
Thanks :-) It seems like you've been having a hard time with meds too! Benzos can be so helpful but I know they can be tough to quit :-( The other medication you mentioned sounds rather horrible! I wonder if it was a beta blocker as they can make you awfully dizzy!

But I can relate! Like you I can take fistfuls of over the counter sleep meds and they bounce off me like shooting bullets at superman. I hate taking prescription sleep meds as I suspect they might mess up my mood and also I build up a resistance. The first night I take zopiclone for example is wonderful! The second just feels like I time warped into the future. Then after the 4th of 5th time if I'm not asleep in half an hour it ain't going to work.
Oh zoplicone the one that has a metallic taste. Yeah same as me, I did a bit of research of it and apparently it was used in the WWII so soldiers could sleep. Dunno how accurate us this though.
 
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Flippy

Flippy

Felis Sapien
Jan 5, 2020
931
Oh zoplicone the one that has a metallic taste. Yeah same as me, I did a bit of research of it and apparently it was used in the WWII so soldiers could sleep. Dunno how accurate us this though.
It would surprise me if that's true. Often these things are developed under those exact circumstances. I do recall actually a metallic taste in my mouth after taking zopiclone. I thought that it was maybe that the combination of meds I was on was causing horrible dry mouth and it was as a result of that.

I'm pretty sure that it was causing issues with my mood too so the only saving grace that I was never allowed to take it for long. Not something I really protested as after a short amount of time it became less effective :-(
 
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Sherri

Sherri

Archangel
Sep 28, 2020
13,794
It would surprise me if that's true. Often these things are developed under those exact circumstances. I do recall actually a metallic taste in my mouth after taking zopiclone. I thought that it was maybe that the combination of meds I was on was causing horrible dry mouth and it was as a result of that.

I'm pretty sure that it was causing issues with my mood too so the only saving grace that I was never allowed to take it for long. Not something I really protested as after a short amount of time it became less effective :-(
Yeah the Zoplicone and ambien are for like a 2 week thing. On my lowest point I was taking way to many of those. Even during the day as an anxiety pill, crazy I know.
 
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Flippy

Flippy

Felis Sapien
Jan 5, 2020
931
Yeah the Zoplicone and ambien are for like a 2 week thing. On my lowest point I was taking way to many of those. Even during the day as an anxiety pill, crazy I know.
Sounds like we've had some similar experiences :-( Have you found that your anxiety levels have improved by (ironically) ditching the anxiety meds etc? They prescribed me SSRIs, I've found that those meds really messed me up. Hardly surprising as I have been diagnosed with bipolar disorder. Unfortunately for me my psycho psychiatrist either ignored my diagnosis or preferred to pretend it had never been made. So basically pushed all these meds down my throat to resolve the damage the SSRIs were doing. It became like that "There was an old lady that swallowed a fly" nursery rhyme! I thought it was best to stop swallowing things before I got to the "swallowing a horse" part of the rhyme!
 
Sherri

Sherri

Archangel
Sep 28, 2020
13,794
For a while I thought it was working better than Benzos until I took a drive at 4am and have no recollection of it, I went to the pharmacy the 24/7 one got 4 more scripts, and after a couple of days went back and asked for those meds again. The lady said, you ran out of pills, it says on the system you came here at 4am to get it. I was like no way, are you calling me a liar. Made a huge scene at the store. When I got home, I went through my receipts and there it was, I drove at 4am or around that time, in my car, saw the receipt, had no recollection of that drive at all. I was like wtf! True story believe it or not. My anti depressing pills are viorxetine, when I was put on it I asked my doc, don't give me anything that would make me a zombie, make me fat or mess with my sex life ( sorry again to mention this) . But I've been on them for a while and they work okish. I also must say this forum helped me a lot to feel better, not saying that life is amazing. But I take it day by day. Have my sn on a safe place, unopened just in case. But I was a mess when I first joined this site, lost many buddies here, hope they are ok, wherever the after life is. But I kept on going….sorry for the long post.
 
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Flippy

Flippy

Felis Sapien
Jan 5, 2020
931
The quetiapine caused that? When I was on the immediate release quetiapine I experienced some issues with memory too. It could range from trying to make a cup of tea and constantly going back to a drawer and getting a tea spoon. Then repeating that in a loop over and over, then maybe getting milk from the fridge, adding it to the tea, putting it back, then going to the drawer and getting yet another teaspoon! Then realising I had a dozen tea spoons, then going back to the fridge to retrieve the milk. It was like my short term memory was totally corrupted. Or I would pull myself together enough to walk into town, get there and not be able to recall why I had went there. Or request a repeat prescription (much like you describe) collect it, then forget, and go back to the pharmacy to collect it. Pretty embarrassing. The problem is, the staff in these places, instead of thinking, this guy is clearly unwell, they think you are trying to score drugs! Things improved quite a bit though when they finally agreed to give me the extended release quetiapine. But yeah, this site helps me more than most mental health "professionals" have. I will never willingly accept "help" from those people ever again. I would rather talk to people that truly understand what it's like to be in my situation. It's done more to keep me going than than they have!
 
Sherri

Sherri

Archangel
Sep 28, 2020
13,794
The quetiapine caused that? When I was on the immediate release quetiapine I experienced some issues with memory too. It could range from trying to make a cup of tea and constantly going back to a drawer and getting a tea spoon. Then repeating that in a loop over and over, then maybe getting milk from the fridge, adding it to the tea, putting it back, then going to the drawer and getting yet another teaspoon! Then realising I had a dozen tea spoons, then going back to the fridge to retrieve the milk. It was like my short term memory was totally corrupted. Or I would pull myself together enough to walk into town, get there and not be able to recall why I had went there. Or request a repeat prescription (much like you describe) collect it, then forget, and go back to the pharmacy to collect it. Pretty embarrassing. The problem is, the staff in these places, instead of thinking, this guy is clearly unwell, they think you are trying to score drugs! Things improved quite a bit though when they finally agreed to give me the extended release quetiapine. But yeah, this site helps me more than most mental health "professionals" have. I will never willingly accept "help" from those people ever again. I would rather talk to people that truly understand what it's like to be in my situation. It's done more to keep me going than than they have!
No I slept drive on excess ambien alone that's the scariest thing I was like on 20 pills all toguether that afternoon and night. That's how high my tolerance was To Z drugs. I only took quetiapine for around a week, like I mentioned yesterday I had horrible side effects on it. I've seen many professionals, way too many for years, even was in a hospital for 3 weeks like a zombie taking pills all day given by nurses and put in front of a TV with the group till 10pm. Never again, last year I finally found a doctor who got my chemicals balanced and i do t even feel sick on any of the pills, I love my doctor a lot and call him my saviour very often, he just blushes, but I've seen and taken horrible things before him. Now I can work, watch TV, go for a long drive, like I said day by day. I hope you manage to find a good doctor if You are looking for one. And I'm always here if you wanna chat. Hugs
 
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Flippy

Flippy

Felis Sapien
Jan 5, 2020
931
I see! Wow that must have been quite scary! It does sound like they had you doped to the gills as they say! :-0 I'm very glad for you that you have a good and caring doctor now! They seem to be the rarest of things! I'm also glad that you are in a much better place these days and you can concentrate better and do more things most people take for granted :-) It's often misunderstood by people that most of us "mentally interesting" people would just like to get some enjoyment out of the simple things like watching a TV show or going for a drive. I hope that the new doctor I have registered with will be a vast improvement on the previous ones :-) Time will tell :-) And thanks for the offer to chat! I extend you the same offer too! :-) Thanks for replying to this thread and sharing your experience, I really appreciate it! :-) :hug:
 
Alwaysbadtime

Alwaysbadtime

Enlightened
Jun 28, 2021
1,158
No. I take it for sleep and it is fine. I already had nightmares. It keeps me asleep so I don't wake up every two hours and go smoke.
 
L

LittleJem

Visionary
Jul 3, 2019
2,600
If you are on Facebook, there is a Facebook group for this medication and others will be able to tell you their experiences....I was prescribed it but haven't tried it yet.

I find the groups really useful as it's what the doctored don't know/don't tell you.
 
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Flippy

Flippy

Felis Sapien
Jan 5, 2020
931
If you are on Facebook, there is a Facebook group for this medication and others will be able to tell you their experiences....I was prescribed it but haven't tried it yet.

I find the groups really useful as it's what the doctored don't know/don't tell you.
Thanks for letting me know! :-) I don't have a Facebook account and I find it all quite Orwellian lol! Is it possible to see the page without an account? I would be interested to see if anyone has had a similar experience of finding it like a miracle at first and then after a time having tons of adverse effects. It would be interesting as I'm annoyed sometimes by doctors attitudes when I talk about the side effects. I often get rather condescending dismissive responses. I have often wondered if a lot of reactions arent recognised simply because when an individual reports them, they are dismissed too, so as far as the record shows, they don't occur. :-(
 
L

LittleJem

Visionary
Jul 3, 2019
2,600
Thanks for letting me know! :-) I don't have a Facebook account and I find it all quite Orwellian lol! Is it possible to see the page without an account? I would be interested to see if anyone has had a similar experience of finding it like a miracle at first and then after a time having tons of adverse effects. It would be interesting as I'm annoyed sometimes by doctors attitudes when I talk about the side effects. I often get rather condescending dismissive responses. I have often wondered if a lot of reactions arent recognised simply because when an individual reports them, they are dismissed too, so as far as the record shows, they don't occur. :-(
Make a fake name account just to join the group? It's a private group but anyone can join..https://www.facebook.com/groups/384836649074075/?ref=share
Thanks for letting me know! :-) I don't have a Facebook account and I find it all quite Orwellian lol! Is it possible to see the page without an account? I would be interested to see if anyone has had a similar experience of finding it like a miracle at first and then after a time having tons of adverse effects. It would be interesting as I'm annoyed sometimes by doctors attitudes when I talk about the side effects. I often get rather condescending dismissive responses. I have often wondered if a lot of reactions arent recognised simply because when an individual reports them, they are dismissed too, so as far as the record shows, they don't occur. :-(
The Facebook group has all kinds of stories and effects but you will need a FB account . But as said, make a fake one!
 
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Flippy

Felis Sapien
Jan 5, 2020
931
Make a fake name account just to join the group? It's a private group but anyone can join..https://www.facebook.com/groups/384836649074075/?ref=share

The Facebook group has all kinds of stories and effects but you will need a FB account . But as said, make a fake one!
You know, call me a dumbass but it hadn't occurred to me to create a fake account! Lol! I'm supposed to be pretty smart or so people say, but meh, those neurones don't fire when I need them to it seems. I guess maybe I had presumed that it might be difficult to do that and stay anonymous, at least subliminally in my mind. But it's a good idea! Thanks for the suggestion! :-)
 

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