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Almost to the point of using one of my last resources: Seroquel


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I am at my second taper attempt of Valium, now at 10mg. Pregabalin was given to me to help on this but it didn't do much and I guess I developed tolerance on both drugs now. I am at 200mg of pregabalin. I also take 100mg of fluvoxamine, a SSRI for OCD, but trying higher doses caused tinnitus spikes.

 

I am considering measures such as memantine, quetiapine, rehab because: I can't watch TV, it's uncomfortable and feels like it's too much stimuli, it's exhausting and makes my right temple area of the brain feels like burning. I yawn a lot after, as if I was going through a cooldown proccess after such exposures... I think I always had some degree of autism but now it got very exacerbated.

 

Also, my cortisol levels are very low at the afternoon and after. In the afternoon, it measured 20 when the lower boundary is 50. I am stress intolerant now too.

 

OCD is pretty tough right now and I am also agoraphobic, so I feel very frustrated about being on my 30s and maybe losing the prime time of my life.

 

I want something besides slow taper and waiting, I want to act. To taper being unstable as I am now would be torture. I am not working since December as I can barely stand in front of screens and keep meetings. I live with my parents and I hate to make their heart hurt seeing me like this. For this, I am almost considering some rehab place where I can taper according to my rules.

 

But for now, there are still options, some I consider being memantine and quetiapine (two very different drugs, for separate usage if one doesn't do the trick).

 

Given all that, what are your experiences with low dose quetiapine such as 12.5mg or 25mg?

 

Please help me to live instead of just waiting and suffering without leaving my house.

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If you want more problems, take Quetiapine at any dose.

 

If your issues are the drugs taking more drugs doesn't seem like a reasonable answer.

 

Why are you tapering the benzo? Did you become tolerant?

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If you want more problems, take Quetiapine at any dose.

 

If your issues are the drugs taking more drugs doesn't seem like a reasonable answer.

 

Why are you tapering the benzo? Did you become tolerant?

 

Initially, because the known long term side effects and because I developed tolerance pretty quickly on alprazolam. But later or now, because I am tolerant and I am barely living, more like surviving.

 

I would take another drug to taper later if this would help me to have a life while tapering pregabalin and benzo. I refuse to lose like 5 years being unstable and in a kind of torture, to be free from this nasty stuff only on my 40s with all around me changed. I am so pissed with all this.

 

Don't you think there is the possibility of quetiapine being a catalyst to the tapering and giving me a good quality of life meanwhile? What were your experiences with quetiapine? I think I remember you mentioning using it.

 

Or memantine, which theoretically would make sense given my autistic behaviors, pre existing OCD and dealing with the excess glutamate?

 

Honestly, the way I am now is barely acceptable and restarting the taper without additional support would be torture.

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Are you considering Seroquel because you are not sleeping? This drug is a complete and utter NIGHTMARE! I read volumes of warnings on this site and elsewhere, but I was desperate to try "just one more thing." There is no comfort or hope in this darkest, most harrowing of drugs.

The only hope is to get off of valium. That's your only job right now. Don't worry about your parents, they've made it this far. Don't worry about losing your youth, most of us have lost MUCH more than that. Step by step, one day at a time, get valium completely OUT OF YOU, forever.

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I am considering it because it helps with GAD and OCD which are exacerbated now, I refuse to lose my youth and make my mother that dedicated so much to raise me and who loves me so much being melancolic because of the suffering of her son. You don't know how much she suffers seeing me this way, and I still want to retribute all the love she gives and all that she did for me.

 

I do not have a social life now and I am getting sickier with time due to this and not going out. I refuse to giving up battling. I will be a lab rat if needed, I will updose until I find stability if needed. But my father himself noticed that I am only surviving now and I know this very well.

 

I can't stop crying with the thought of being 34yo and getting out of the "prison" only on my 40s. Please, do not make me entertain it.

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I tried 12.5mg Seroquel for sleep during the beginning of my taper journey and it made things worse…. I tried all the meds Drs prescribe off label for sleep at small doses they said and well it got me into a worse dilemma.

 

I’ve been there with the low cortisol, almost 0

I’m the morning and I know we’ve communicated…… it is very hard to not let the fear of all this take over and want to battle against it all and try to ‘win’ against it and think willpower detoxing will get you through. I want to mention this is what many of us have thought before we understood that’s the last option bc it has the high potential to make things much worse. My family and I talked to almost 100 places throughout the US to let me taper my way for a long taper and well it doesn’t exist. They are bound by restrictions of insurance rules 30-90 days and longer than yhay they just don’t have plans to keep someone at 15k minimum where people stay for a year or longer to do a safe taper. It’s very costly. So hence why they are typically 30-80

Day ‘programs’. They are not designed for benzos bc they don’t realize (well maybe now they do but 3yrs ago most didn’t, how it’s not about getting the benzo out of system like with other drugs). It’s about safely coming off while trying to function in life best you can.

 

When our nervous systems are dinged /over sensitized by the meds, taking other meds don’t seem to work like they would for someone initially starting something having never been on something before. Our systems kind of reject anything put in our bodies and throw a tantrum so why many people struggle with more meds as they try to find answers. I went thru 12 before realizing what happened.

 

Many things that appear to be health issues come up during this bc of how benzos affect literally most systems our body has (endocrine, cardiovascular, CNS, etc), all can be affected and so why we have various strange sensations and blood work starts getting skewed etc. I had the low cortisol and told my pancreas wasn’t working optimally, blood Syrah out of whack, insulin resistance on all that side of things and so I had my endocrinologist monitor blood work every month. I wasn’t gonna take any meds bc by that point I read how our blood work can be altered during this and salivary cortisol can be off bc adrenals struggle…. So I asked her let’s keep an eye on this as I taper. Sure enough as I got lower things started improving bc as people stay on benzos they can get more sick and more sick. I was diligent about doing blood work even if I was so sick, I still went to keep eye on things.

 

So I’d really think about maybe working with a benzo coach to kind of make sure you have a good plan set up, your dose times are consistent every day, you aren’t taking Valium doses on a full stomach (won’t be absorbed as well and can make symptoms worse), and map out how you can try to not let the fear of what’s happening take over and look for a magic answer (we all wish there was). Consistency is the best for our brains during this. Trying to fight all this makes it worse, I fought it for awhile before giving in and kind of surrendering to the crappy days and saying ok today I have to rest or lay on couch or go from one bed to the other to change scenery, but maybe tomorrow I cns sit outside, take short walks, play with my dogs even though I don’t feel good, sit at the quiet park snd be in nature. Listen to a silly podcast, play yhe daiky wordle snd qwordle, do a puzzle on my phone, do word searches or paint some kid step stools to sell when I had the strength. Walk around the garden center when I had strength. Watch golf bc it’s not so stimulating, listen to rain sounds on my phone when super stimulated. Have friends come sit in front yard and visit since going out ot to dinner eas too much…. Still need some connection and if you ask for a quiter place maybe even s tea or coffee shop can get you out of house on a better day. It feels impossible to get out of

The miserable fearful space our brains get stuck in, but if you push against that a little bit here and there, you’ll find as you taper down you can try to live life some here and there as the better shifts happen. We don’t know when they will happen and not maybe as frequent as wed like, but they happen along the way as our brains get more aligned or regulated as it sorts on the lower med amount.

 

My family has watched me struggle and finally read what I sent them and started realizing what they could do to help reduce the suffering snd what was helpful- cooking for me, grocery shop, helping with my dogs, visiting or driving me to get me out of the house, listening when I needed an ear or a hug, giving me encouragement to keep persevering, showing me how I have gotten better when I was not even realizing it….. and reiterating how I will make it to the other side like everyone else, the most important thing to keep hearing and telling ourselves.

 

If your family and friends can know how to support you then they can help not feel so helpless in this as well - Baylissa has a book that’s helpful with a chapter for families. https://www.amazon.com/Recovery-Renewal-Benzodiazepine-Tranquillisers-Antidepressants/dp/0957213050

 

Sleep comes back, I’ve been there and mine is getting better. My adrenals and cortisol has straightened out a lot, I’m getting better and I’m at low dose almost finishing, so please know you can do this too with a taper. But if you find a place that will taper you over a long period of time and not get other meds involved then I wish you well!! They won’t be monitoring blood work like your endocrinologist would and all that bc they don’t keep up with all of that stuff so much at these places…. They wouldn’t even know where to start. So just keep that kind of stuff in mind.

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Want to add a lady in one group went to Inner Fire in Vermont in February to help come off Gabapentin….. they take your phones and you go for a year so I have no idea how she’s doing. Supposedly a lady runs in that used to work with psychotropic meds maybe at a detox place and then saw what they can do to people and opened Inner Fire. My friend said it is very expensive but at least it’s a year program and think they know about the Ashton Method which is helpful.

 

http://innerfire.us/program-information/

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I tried 12.5mg Seroquel for sleep during the beginning of my taper journey and it made things worse…. I tried all the meds Drs prescribe off label for sleep at small doses they said and well it got me into a worse dilemma.

 

I’ve been there with the low cortisol, almost 0

I’m the morning and I know we’ve communicated…… it is very hard to not let the fear of all this take over and want to battle against it all and try to ‘win’ against it and think willpower detoxing will get you through. I want to mention this is what many of us have thought before we understood that’s the last option bc it has the high potential to make things much worse. My family and I talked to almost 100 places throughout the US to let me taper my way for a long taper and well it doesn’t exist. They are bound by restrictions of insurance rules 30-90 days and longer than yhay they just don’t have plans to keep someone at 15k minimum where people stay for a year or longer to do a safe taper. It’s very costly. So hence why they are typically 30-80

Day ‘programs’. They are not designed for benzos bc they don’t realize (well maybe now they do but 3yrs ago most didn’t, how it’s not about getting the benzo out of system like with other drugs). It’s about safely coming off while trying to function in life best you can.

 

When our nervous systems are dinged /over sensitized by the meds, taking other meds don’t seem to work like they would for someone initially starting something having never been on something before. Our systems kind of reject anything put in our bodies and throw a tantrum so why many people struggle with more meds as they try to find answers. I went thru 12 before realizing what happened.

 

Many things that appear to be health issues come up during this bc of how benzos affect literally most systems our body has (endocrine, cardiovascular, CNS, etc), all can be affected and so why we have various strange sensations and blood work starts getting skewed etc. I had the low cortisol and told my pancreas wasn’t working optimally, blood Syrah out of whack, insulin resistance on all that side of things and so I had my endocrinologist monitor blood work every month. I wasn’t gonna take any meds bc by that point I read how our blood work can be altered during this and salivary cortisol can be off bc adrenals struggle…. So I asked her let’s keep an eye on this as I taper. Sure enough as I got lower things started improving bc as people stay on benzos they can get more sick and more sick. I was diligent about doing blood work even if I was so sick, I still went to keep eye on things.

 

So I’d really think about maybe working with a benzo coach to kind of make sure you have a good plan set up, your dose times are consistent every day, you aren’t taking Valium doses on a full stomach (won’t be absorbed as well and can make symptoms worse), and map out how you can try to not let the fear of what’s happening take over and look for a magic answer (we all wish there was). Consistency is the best for our brains during this. Trying to fight all this makes it worse, I fought it for awhile before giving in and kind of surrendering to the crappy days and saying ok today I have to rest or lay on couch or go from one bed to the other to change scenery, but maybe tomorrow I cns sit outside, take short walks, play with my dogs even though I don’t feel good, sit at the quiet park snd be in nature. Listen to a silly podcast, play yhe daiky wordle snd qwordle, do a puzzle on my phone, do word searches or paint some kid step stools to sell when I had the strength. Walk around the garden center when I had strength. Watch golf bc it’s not so stimulating, listen to rain sounds on my phone when super stimulated. Have friends come sit in front yard and visit since going out ot to dinner eas too much…. Still need some connection and if you ask for a quiter place maybe even s tea or coffee shop can get you out of house on a better day. It feels impossible to get out of

The miserable fearful space our brains get stuck in, but if you push against that a little bit here and there, you’ll find as you taper down you can try to live life some here and there as the better shifts happen. We don’t know when they will happen and not maybe as frequent as wed like, but they happen along the way as our brains get more aligned or regulated as it sorts on the lower med amount.

 

My family has watched me struggle and finally read what I sent them and started realizing what they could do to help reduce the suffering snd what was helpful- cooking for me, grocery shop, helping with my dogs, visiting or driving me to get me out of the house, listening when I needed an ear or a hug, giving me encouragement to keep persevering, showing me how I have gotten better when I was not even realizing it….. and reiterating how I will make it to the other side like everyone else, the most important thing to keep hearing and telling ourselves.

 

If your family and friends can know how to support you then they can help not feel so helpless in this as well - Baylissa has a book that’s helpful with a chapter for families. https://www.amazon.com/Recovery-Renewal-Benzodiazepine-Tranquillisers-Antidepressants/dp/0957213050

 

Sleep comes back, I’ve been there and mine is getting better. My adrenals and cortisol has straightened out a lot, I’m getting better and I’m at low dose almost finishing, so please know you can do this too with a taper. But if you find a place that will taper you over a long period of time and not get other meds involved then I wish you well!! They won’t be monitoring blood work like your endocrinologist would and all that bc they don’t keep up with all of that stuff so much at these places…. They wouldn’t even know where to start. So just keep that kind of stuff in mind.

 

Thank you, Boges. You are so patient with me...

 

Sleep isn't being an issue but the GAD, OCD, agoraphobia and sensory overload are making me miserable and lonely.

 

I can't give you a proper answer as I am getting very mentally tired. But I wonder what are your thoughts on memantine: in theory, would be the ideal solution for benzo brains due to its action on inhibiting glutamate, lowering tolerances, helping with OCD and autism (I guess this would help me).

 

I will need to start to taper again but if no other drug can help I will need to updose to have a liveable life while tapering.

 

Also, I don't know where to find a benzo coach where I live.

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If you want more problems, take Quetiapine at any dose.

 

If your issues are the drugs taking more drugs doesn't seem like a reasonable answer.

 

Why are you tapering the benzo? Did you become tolerant?

 

Initially, because the known long term side effects and because I developed tolerance pretty quickly on alprazolam. But later or now, because I am tolerant and I am barely living, more like surviving.

 

I would take another drug to taper later if this would help me to have a life while tapering pregabalin and benzo. I refuse to lose like 5 years being unstable and in a kind of torture, to be free from this nasty stuff only on my 40s with all around me changed. I am so pissed with all this.

 

Don't you think there is the possibility of quetiapine being a catalyst to the tapering and giving me a good quality of life meanwhile? What were your experiences with quetiapine? I think I remember you mentioning using it.

 

Or memantine, which theoretically would make sense given my autistic behaviors, pre existing OCD and dealing with the excess glutamate?

 

Honestly, the way I am now is barely acceptable and restarting the taper without additional support would be torture.

 

I personally do not think these drugs would give anyone a good quality of life while tapering. Also, it is not as simple as saying if I take this, then it will make this happen or provide relief. Everything is a gamble with drugs in benzo withdrawal. Drugs are not predictable like that in general but definitely not in benzo withdrawal. There is no guarantee they would make tapering any easier. You could potentially get stuck on three drugs, not just two, if it doesn't go as planned. You could dig your hole much deeper.

 

Antipsychotics have a high risk of akathisia which I have because of being given Seroquel during benzo withdrawal. It is a waking nightmare.

 

Every year you are on an AP, it ups the odds of dystonia, parkinsonism, and dyskinesia. Is it worth those risks to you?

 

I am now stuck on the Seroquel and making a will and legal directive etc., because I do not know if I will literally live through this given the severity of the symptoms. I have lost a ton of money on medical expenses, my autonomy, and my job; I need help to shower and eat due to the effects of tapering this drug. I believe I would be healed from benzos if I had not taken Seroquel. Also, I would have spared myself the higher level of trauma and physical torture I have experienced trying to taper Seroquel. It has been worse than benzo withdrawal. So, yeah, I do not recommend it.

 

Memantine is used to treat dementia and has horrendous possible side effects as well. Who is recommending this to you??

 

Research DAWS --  dopamine agonist withdrawal syndrome.

 

Knowing what I know now, I would take an underlying condition over the damage from additional drugs. But that is me. You have to do what you have to do for yourself and feel comfortable with a cost/benefit analysis of choices.

 

Unfortunately, many of us are just surviving. You do not have control over the amount of time you spend in withdrawal. If any of us had control, we would all be healed.

 

I recommend her all the time, but I suggest speaking with Angela Peacock about this before you make any decisions. She offers a free introductory meeting: https://calendly.com/apeacockconsulting/15min?back=1&month=2023-06

 

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Rebecca, I am sorry you are experiencing all this. I do know about the extra pyramidal effects so that's why it would be one of if not my last resort. Maybe even updosing would be better than that. I don't like the idea of using AP, always avoided when it was pushed to me. I hope you figure things out and heal soon.

 

As for memantine, what are the horrible side effects you refer to if you don't mind sharing? No doctor recommended it to me but at this point I am skeptical of doctors anyway. I just saw some papers on using it as an off label augmentation medicine for OCD, one or more about using for alcohol withdrawal, positive annedoctal reports (including here) for helping on tapering benzo or pregabalin and the good reviews on it for autism on drugs.com.

 

DAWS seems kinda rare, it is hard to find one suffering in the long term when compared to benzos.

 

All that being said, I am also not a huge fan of adding a new drug to the stack: memantine has a very long half life and, as you say, I don't know how I will react despite the theory of glutamate reduction. But if there is a slight chance of having my life back and treating OCD, I guess I will try given that I feel I am already miserable and we can't predict if we will have PAWS nor how long it would last if so. For this, I ask about the horrible side effects before trying it... and are they permanent? I saw that high doses such as 20mg and above can have some risk of hallucination.

 

Thank you for the coach! I am on a licence now so I wonder about her costs. One issue is the currency conversion as I am from Brazil, so it could be very expensive for me depending on how much she ask.

 

 

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You risk the extra pyramidal sxs as well w memantine.

 

Anglea’s first session is free. Just do it and go from there.

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