Thursday, November 21, 2019

Comments by Liloisabride

Showing 6 of 6 comments.

  • Thanks, Nancy. I’m currently looking into the paleo diet myself and switching all my food to organic to see if that helps. Apparently most preservatives, fermented and food colouring and additives produce histamine in the body so am trying to keep these to a minimum.

    I had eye pain the last time I stopped taking Seroquel too. That coupled with the migraines were a killer.

    How long did the itching last for you, Nancy?

  • Hermes, yes that’s what I’ve found. The last time I tried to withdrawal it was insane how itchy I got. My whole body was covered in nail scratch marks because nothing stopped the itching other than me scratching like crazy or if I was desperate I had to grab any sharp object to scratch with. My whole body had felt like it was on fire when it started itching. Last time I went from 150mg to 0mg in 2 weeks as per instructions from my pdoc.

    This time around I tapered properly with advice from my GP and to be honest this time the itchiness is much more subdued. I can actually deal with this but at some point during the day where I have forgotten to drink water the itchiness comes back. It’s more annoying than anything and I have made the choice to not go back to Seroquel. I can’t seem to successfully cut the small 25mg in half anyway (believe me I tried!)

    Am wondering if anyone has been through this itching after Seroquel and how long it lasted for?

  • Thanks so much Julie. My mum also asked me about my washing powder hehe. I’ve been using the same powder to wash my clothes for the last 7 years so I’m sure it’s not that. Hot water apparently makes thr itchiness worse so Ive been showering with warm water to help that. The majority of the itching is on my scalp with itchy palms and then it comes in waves all over my body. Sometimes it’s very itchy and other times it goes away quickly. Have been using the same soap for many years too so am sure it’s not that. I peformed a google search for itchiness seroquel withdrawal to find ways to combat this. That’s where I found drinking water helped and a list of low/no histamine foods.

    I’m in Australia so won’t be able to find American products here. Or perhaps at Costco.

    Either way thank you! All suggestions are welcome in my view. Hopefully others can share their suggestions too.

    Lilo (not Lisa) xo 🙂

  • I checked back here tonight hoping for more responses and what I found was so much compassion between strangers who are bonded together by this drug. It’s funny how in our times of suffering we are united as one.

    I wanted to give you all an update on my tapering off Seroquel. My GP suggested I taper off by reducing from 50mg XR To 50mg immediate release. I was on 50mg XR for 3 weeks and 50mg immediate release for 2 weeks. There was no change in how the drug worked for me other than falling asleep sooner on the immediate release

    After 2 weeks on 50mg immediate release, I reduced to 25mg. I was prepared for any disruptions that may occur in my body and was ready to get back onto 50mg if the reduction to 25mg didn’t go well. But it did. I stayed on 25mg for 2 weeks and stopped taking it last Monday night.

    I was worried that I wouldn’t be ok like the things I experienced in my previous post. But I was ok. No headaches or nausea until the third day but not as extreme as previously experienced during my first withdrawal. It’s now 7 days later and the nausea and slight headaches have completely gone. I have been sleeping too. The first few nights I slept for 4 or 5 hours and only woke up to use the bathroom. This was strange to me since while taking Seroquel for 4 years, I had never woken during the night. Not once. A couple of days ago I slept for 8 hours straight. I couldn’t believe it. No insomnia! Last night I slept 7 hours straight and actually had a dream that I remember. Saturday night I went out to watch a world cup soccer game with friends and laughed so much. I felt happy and I laughed and laughed all night long. I felt so free and felt like ME again.

    The only thing I am struggling with is the itchiness. I have some uncontrollable nerve twitches that seem to only occur above my left eye and sometimes my arm, but not enough to cause concern just yet. I am keeping an eye on it. I recently did some research about the itchiness and it seems that Seroquel is also an anti-histamine so it seems I am reacting to any foods I eat that produce histamine. Funny I always wondered why I never suffered from allergies. Drinking water seems to help with the itching and I have tried to eat foods that produce low histamine in the body to start with and plan to re-introduce my normal foods slowly to try and cope.

    I had 2 weeks off from work purposely timed so that I woukd be home and safe during the transition period coming off Seroquel. I’m not sure if anyone else will benefit from these details but I think it’s important to see how others have managed to successfully taper off this horrible drug in the hopes that others may be able to try one of these things if they are going through the same thing. It’s day 7 for me now and I am suprised at how well I am doing. I honestly didn’t think I would make it through. My thoughts are clear. I’m not anxious or worried. I can also say my appetite has decreased substantially. It’s obvious to me now how much I was eating after being hungry all the time while on Seroquel.

    Drinking 2 to 3 litres of water each day, I believe is helping to flush out all the toxins and is helping to soothe the itching. My drink bottle says “Drink more water” on it so that helps to remind me too. I will be sure to update you guys in a few weeks again to let you know how I’m going or if anything strange comes up.

    I struggled finding people’s experiences after Seroquel online so I hope by posting mine here it can perhaps help someone else.

    Thanks for reading and thank you to everyone here who takes the time to post and Nancy thank you most of all. For without you and this article uou have written, I never would have gained the courage to seek answers and question my doctor.

    Wishing you all love, hope, faith and most of all, good health.

    Lilo xo

  • Thank you so muc, Lisa. I think youre right. Doctors need to recognise when someone is simply going through a tough time compared to suffering from a mental illness. I really don’t think that a handful of sessions is enough to really get to know one’s turmoil of pain and unhappiness to then decide oh you have this mental illness here are some scripts so be on your merry way. Needless to say I haven’t had a follow up call from my pdoc to see how I am going. That makes me feel like I really was just a number to him. I am thankful for Nancy and being able to find this site and to be able to connect with people who have suffered in similar ways. We are all bonded together by this terrible drug and I hope that someone else who is going through the same thing can stumble on this page and see that they are not alone, as I have.

  • I was in an abusive relationship during 2008 and 2011. In 2010, I was convinced by the other person in this relationship that the reason I was unhappy and the reason I “believed” I was treated badly by him was because “something was wrong with me”. So if he was to stay with me, I had to “get help”. So I did. I went to my GP and I think she could see I was depressed. She then prescribed me with Pristiq 50mg and referred me to a psychologist. The Pristiq helped me and I was lucky enough not to have any side effects. The psychologist, after seeing her a handful of times, diagnosed me with depression, social anxiety disorder and borderline personality disorder. I truly was depressed: I was interstate alone with no family or friends one could lean on other than my abusive partner and I actually let him believe I was the reason that our relationship wasn’t working.

    I was then referred to a psychiatrist who saw for a couple of sessions and thought I had epilepsy, (it runs in my family) so he prescribed me with Epilim. I was allergic to that and ended up in Emergency so had to stop it immediately. He then asked me to try Seroquel. I started with 50mg and I remember the first time I took it, I think I slept about 16 hours. I kept telling the doctor that I just couldn’t get up in the morning for work and I felt like a zombie when I did manage to wake up. It would take so long to “snap out” of the fatigue and by lunch time I was better. It did help with my moods. I told my psychiatrist I would feel happy and sad all day, and sometimes I would forget what I said in the heat of a moment. I would forget what was said; the conversation – like a complete wipe of my hard drive, but – I would always remember how I felt. I didn’t know why, and I guess he thought I had some kind of epilepsy because of that. Meanwhile, the Seroquel was causing me such grief waking up in the morning. My moods did get better and I finally felt in control of my emotions. I’ve always been an emotional person; I cry at movies, I cry when animals are being hurt on the TV, I feel love strongly and fall in love quickly. I have been this way since I was a child. I also have abandonment issues due the fact that my father was not a father to me. (He told my mother to have an abortion when she told him she was pregnant with me). All I can say is that child knows when he or she is not wanted by a parent.

    November 2011, I meet and fall in love with the love of my life. (No, really). He accepts me for who I am and understands that I take medication every day and understands that I may or may not have bipolar. During some time of 2012, and after much of my complaints about the way I felt so drugged and zombie-like, my psychiatrist upped my dosage to Seroquel XR 150mg. I never had anything new to report. I was now in a loving relationship and was not feeling anything other balance and happiness in life – for the first time. Was this due to Seroquel? Was I really crazy? I wasn’t sure. And then he said it. My psychiatrist said I had Bipolar. To this day, I don’t know which kind. He never told me what he thought he always just sat there; looked like he was listening to me; making notes; asking questions; always looking down at his notebook. He did tell me one thing – that I was high functioning. What did that mean? I got my answers by doing my own research. Funny, right? Isn’t he supposed to have the answers? He is my doctor?!

    Fast forward to May 2014: My partner (now my fiancé) and I decide that we would like to plan a pregnancy. I had been so happy, planning, reading, watching documentaries, saving, everything. We were both very excited. So we went to our local GP to see what tests we needed to get done etc. GP said Seroquel can cause some issues with pregnancies so to go and see my psychiatrist to see where he stood about Seroquel. Now this is where things get tricky.

    My psychiatrist said he was happy for us wanting to have a baby and that he thought I was ready to come off Seroquel. WOW! I was so happy! He said, yes no problem if you want to try to conceive as early as next month, you can come off it now. Awesome! I was now stable enough to come off this drowsy, zombie drug. Except for one thing – he said I could just stop taking it cold turkey. I was shocked. I told him no – I couldn’t do that. When he asked why, I told him that every time I would forget to take it or missed a dose for whatever reason, I would be nauseas all day long the following day with a splitting migraine and I was unable to sleep a wink at all. I really struggled on those days. I gave him details of every physical symptom I felt and described how I couldn’t get through the day until I took my next dose the following night. He said, right, in that case, just reduce your dose from 150mg to 100mg and stay on that for a week, then go down to 50mg for the following week and see how I go. Well I should have listened to my instincts here but I foolishly thought: If the doctor says I can come off this cold turkey, surely I can reduce the 7 days per 50 mg to 4 days, right? So I did. I dropped from Seroquel XR 150mg to 100mg in 4 days and I was fine. Then reduce to 50mg the following 4 days. My last dose was Thursday night last week and come Friday night, I was starting to feel a little nauseas and my breasts were tender. Stupid me: I thought I might be pregnant because I had a pretty bad headache and nausea so I automatically thought, maybe! I could be! But boy was I wrong. I slept 2 hours that Friday night, and I couldn’t sleep deeply. It was as if I was cat napping, kind of asleep but aware of the sounds in the background and my environment. It was random sleep, and each time I would fall asleep, I would wake up. It seemed as though I was sleeping on and off every 20 minutes. When I awoke, it was because my fiancĂ© had gotten up out of bed early that morning to use the bathroom and he woke me up in the process. Lucky he did, as I was having a vivid nightmare of zombies chasing me and trying to kill me. That’s one thing that went away after taking Seroquel. The nightmares I would have each and every night of someone or something trying to kill me. I’d rather have those nightmares back each and every night if it meant I could get myself to sleep on my own and not rely on this terrorist drug.

    Saturday morning came and I wasn’t feeling that great. I had energy and I wasn’t tired although my body was exhausted. I thought maybe I was getting the flu. It’s May after all and winter starts in June and even though it’s been really sunny lately, I thought I may have caught something from someone. It happens when you work in an office. My head was pounding and pounding and had to lie on the couch I had commitments Saturday night and Sunday afternoon. I went to a friend’s birthday get together Saturday afternoon and I noticed I was really warm: warmer than usual. I thought maybe I just had a fever because I was getting hot flushes. We were all out on the balcony and the cool air was amazing on my face. I had such a good time. No one would have had a clue that I was fighting the brain zaps in my head. I wasn’t cold at all, I was warm. My fiancé was so cold (he is never cold) so I thought it was strange that I wasn’t. Next we were on our way to pick up my soon to be mother-in-law to take her out for a belated Mother’s Day dinner. She was out of town that weekend so we decided to take her out for a meal when she got back.

    Well on the way, I thought I was going to pass out: my eyes were rolling in the back of my head; I couldn’t keep my head up; every movement the car made, felt like my stomach was going to explode; I felt like I needed to burst into tears and I didn’t know why. All I could do was hold my tummy, press the button so that the car window was all the way down and also put the air conditioning on. I had to pretend that I was ok because I didn’t want my fiancĂ© to worry but it got to the point where he was talking to me in the car and my head must have fallen off my neck or something, because I wasn’t responding. He asked me if I was ok, I said no. He wanted to take me home but I insisted we needed to see his mum. So went to pick her up, took her to a place but there was a one hour wait. So we took her to Outback Steakhouse. I had hardly eaten all day, since the thought of food and the smell of it made me nauseas. I did eat at the birthday but only something small – a piece of meat and some salad – then I gave it all to my fiancĂ© to finish.

    My soon to be mother-in-law knew I wasn’t well but I chose to be out and have dinner with her. I remember downing a glass of “Country Style” lemonade because it was so sweet and would have given me some energy. She had a look of concern on her face as my head just fell off my shoulders and my eyes rolled in the back of my head as I tried to keep my head up. I leaned on my fiancĂ© for support – literally. I ate something small. It was yummy. But again the stomach cramps and the nausea came back. And then it was SO cold that I didn’t know whether to wrap myself up in my fiancé’s arms or just run into the restaurant’s kitchen of cooking warmth. It was then time to go. We took his mum home and on the way I didn’t think I was going to make it. I thought I was going to pass out and I know my fiancĂ© was worried and didn’t know whether to take me to Emergency or not. I said no – I just wanted to be at home.

    Well things got worse. We ended up calling the Mental Health Line at about midnight and spoke to a nurse on the phone. She said my symptoms allowed my call to be transferred to a GP so I spoke to him and he said he wanted me to call a Home GP to come to my house. So I did that, but they said it would take around 2 hours. By 3am I found myself waking up on the couch with my fiancé beside me. GP didn’t call yet to let me know they were on their way. I felt that if I could fall asleep, I would feel better. So I called back to cancel the Home GP and tried to go to sleep. It took me forever to fall asleep. Just like the night before, I didn’t feel tired at all, so I didn’t know if I would fall asleep. I had relied on the Seroquel for so long to make me feel tired and put me to sleep, I just didn’t realise how bad it would be coming off.

    I ended up sleeping a few hours on Saturday night. I had pain in the back of eyes, they felt bruised. On Sunday, I was worried thinking how I would possibly function at work on Monday if I couldn’t get some decent sleep on that night. We went to the shops because we needed toilet paper and I still had that nauseas feeling, migraine and brain zaps. I thought I was getting better. I thought: I can do this. Just a few more days. But then as we were leaving, my body welcomed a wave of itchiness. I was SO itchy, I had to scratch. I didn’t care what people would think staring at me. I wanted to rip my clothes off and scratch. So I did in the car on the way home. I pulled my jeans off so fast and scratched and scratched my legs until I bled. My fiancé was terrified and didn’t know what to do. “Just take me home”, I said.

    I decided to call the Home GP again. She was a lovely Indian lady, with concern and compassion in her eyes. She said I have come off this medication too soon and my body is not responding well to that. The only option I have is to start taking it again. When she said that, my heart sank and I burst into tears. I don’t want to take it again, I sobbed. I don’t want to go through this again, I cried. I don’t know how to do this. How will I cope? She re-assured me that the slower I taper off, the less I would feel these awful withdrawal symptoms. I told her I was anxious and I didn’t know why. I said I couldn’t sleep; I was constantly worried and waiting for something bad to happen; panicking and that I thought I was going crazy again. I don’t want to feel this way anymore, I pleaded. I told her it felt like I was in a room where the walls were caving in on me. She said this was normal and comforted me with her concerned, warm, brown eyes. She confirmed my psychiatrist should never have instructed me to come off this drug cold turkey, let alone drop down by a week of 50mg. It needs to be a slower process. And then she was gone, as swiftly as she had arrived – she was gone. I was left to pick up the pieces of my soul that lay on the floor beneath me, hoping that each piece still worked as I put everything back where it belonged. At 4:30 PM on Sunday night, I hesitantly took 50mg of Seroquel XR. I hate this drug so much.

    Within 45 minutes, my nausea had gone. The migraine remained but I was hungry. I hadn’t felt hungry for almost the entire weekend. I guess that explains the extra 30kg of weight I now carry since starting to take Seroquel in 2010. I used to weigh 67kg. I now weigh 98kg. I know it’s because of the Seroquel but no matter how healthy I try to be, it just keeps piling on. Hopefully after I’ve weaned myself off this drug, the weight will actually come off with exercise, like it happens for normal people.

    I slept well on Sunday night. I slept for 10 hours and was able to go to work on Monday. I still felt horrible and had brain zaps, a constant migraine, sensitivity to light, dizziness and light headedness, and I still felt slightly nauseas but I could cope. Just. My heart rate had slowed down to normal and I could function. Just. I wasn’t able to think clearly. I don’t know how I got through Monday at work.

    Monday night, I took my 50mg dose. I wasn’t in the mood to cook dinner, although I was hungry. Those brain zaps and the migraine was still there and I was exhausted. I fell asleep on the couch and went to bed when my fiancé called to me. What awoke me on Tuesday morning was my heart. It wasn’t just beating fast, it was also POUNDING in my chest. The pain from the pounding is what startled me and woke me up. I was dizzy and couldn’t stand up straight. My vision was blurred. I was worried, because I didn’t know what to do. I was confused for a while and just stayed in bed. My heart didn’t slow down at all, and it worried me so much that I thought I was having a panic attack. The last time I had a panic attack, I was 19 and my heart was beating so hard and fast that it woke me up out of my sleep at 3am I thought I was having a heart attack. It lasted for 20 minutes as I screamed for my mother to help me, begged her to help me.

    I called in sick on Tuesday morning and went straight to the GP. I could barely walk but I walked the 10 minutes to the medical centre in the bright, warm sun with my large sunglasses helping to cope with the excruciating pain from behind my eyes. I tried to read a magazine but it hurt too much. So I just sat there. Hoping the doctor could help me or tell me how to make this pain go away. Suddenly the last patient left the doctor’s office and it was my turn next. Out of nowhere, a woman burst through the doors and asked to see a doctor because her baby son had fallen and hurt his head. She carried her son in her arms and followed by a toddler. She was calm but I could hear she was frantic as she spoke to Ines, the receptionist. The lady filled out her “New Patient” form and held her little son in her arms as she struggled to write on the form and also keep track of her toddler walking around the waiting area. Her baby was adorable. He had gorgeous tanned skin and green eyes with soft brown hair. He really was a beautiful little boy. I started thinking about what our children would look like. Would I hold my baby the same way she was? Would I instinctively know what he needed from me? I hoped so. I want to be that kind of mother. Ever since we decided we wanted to have a baby, I realised that I find myself staring at women with their children. I’m admiring them, seeing how they hold their children, how they speak to them. How their babies respond to them. That look of love that seems ooze from a mother’s eyes. I want that too.

    Another patient suddenly walked in who was late and was supposed to go in before me but Ines told him he would need to wait because an emergency case had presented itself. I assumed she was talking about the lady with the baby. But then all of a sudden, the doctor called my name. I didn’t hear him. He was standing in the corridor and was looking at me. Ines looked at me, said my name and told me that it was my turn. I responded as I was a little confused and said, “This lady needs the doctor to see her baby first. I can wait.” Ines and the lady with the baby both thanked me profusely. I just nodded and did my best to smile, the pain in my head consuming me. She was in there for what seemed like 2 minutes and as she left she thanked me again. She was much more relaxed now so I guess her baby was going to be ok.
    As I walked into the GP’s office, I felt stupid. The GP is going to tell me I am getting sick again. That I need to be on these meds and he is just going to refer me back to my pdoc. I was wrong. He told me pdoc never should have told me to come off these meds cold turkey because the brain needs time to adjust to the dosage levels and learn to cope without the drug in my system. He said the way I was feeling was normal and he helped me put together a tapering schedule – all of which my pdoc should have done with me. My GP even made a comment about how pdocs charge so much for so little time and don’t do much to deal with the aftermath of prescribing meds and then taking patients off these meds like it’s nothing. He said the withdrawal side effects would dissipate gradually as the doses were lowered. That makes sense. Why didn’t my pdoc tell me that? Maybe he doesn’t care anymore because I am off medication and being off medication would mean I am no longer a patient. Right? I am no longer paying $240 Australian Dollars for 15 minutes of his time so I am no longer important. Could it be that? The mind, literally, boggles. He also told me I needed to wait at least 6 months before trying to conceive due to congenital defects caused by Seroquel. Really? I thought that if I was off the medication, since it’s not in my body it wouldn’t pass the placenta. Am I being informed correctly? Well at least for now, all I need is to get off this damned medication that has ruined my life.

    So I called my pdoc’s office that morning. I called him to tell him how I was feeling on this lower dose and called him to tell him how I felt over the weekend. He sounded like he was in a hurry and wanted to get me off the phone quick smart. I told him all of my physical symptoms and he told me that I was just being anxious about not usually taking the meds. He said what I was feeling was just me being panicky and that it was very rare for anyone to be experiencing these kinds of withdrawal symptoms because normally people can come off Seroquel – cold turkey with no withdrawal symptoms and no side effects. I told him that I was not one of those people and that I WAS experiencing these physical symptoms of not being on Seroquel. He said he would be in his office on Saturday and to call him if I needed him. Great help, mate. Thanks for nothing.

    So really, my pdoc advised me incorrectly. This made me really angry. Why wouldn’t he explain anything to me in depth? Why are doctors happy to hand out serious medications like Seroquel as if sweets to a child? I don’t understand it. Not even a warning about withdrawal symptoms. Why not? Do they even care? No. It seems they don’t. At least that is how my pdoc made me feel. Is this a normal reaction? I don’t even know. Am I feeling normal? I don’t know. Am I overreacting? Maybe. Maybe not. Am I demanding too much from a pdoc? Should I only be receiving partial care from my pdoc and not expect too much? So many questions. None of them answered.

    Today is Monday 26/05/2014 and I feel OK. I’ve switched from Seroquel XR 50mg to regular immediate release Seroquel 50mg and my nervous system has adjusted to the lower medication. I am no longer feeling any side effects other than feeling light headed, bumping into things, losing my balance, tiny headaches and dropping things constantly. And of course that dreaded zombie feeling during the day. My wrists for some reason have become weak and I can no longer hold things properly and end up dropping them if I lose my grip. I don’t know if this has anything to do with not being on Seroquel but I am hoping that someone can help me with that. It seems that speaking to doctors is pointless and speaking to others who are or who have been in this position are the best people to speak to.
    By this Friday, I hope to reduce my dose to immediate release Seroquel 25mg. These pills are so small compared to the other doses and that disappoints me because I was hoping to cut the pill in half again after a couple of weeks to further reduce the dose and taper off completely. I’m not sure of what’s to come, and I am a little worried about feeling those horrific withdrawal symptoms again. Falling asleep on my own will also be a struggle but I will need to learn to do this on my own again. I was so manic once about 14 years ago that I was awake for 4 days straight. I didn’t know this was mania at the time but it’s the only thing that makes sense to me. I then took a few Stilnox sleeping tablets which made me sleep for 20 minutes and then I awoke to vomit. I had a slight case of overdosing but it was not intentional – I honestly just wanted to sleep and feel tired again. Not being able to sleep makes me feel so anxious and takes me back to the time I was panicking 14 years ago not having any sleep.

    This will be my biggest challenge and I want to do this without relying on any help – whether it is herbal or natural or whatever is on offer out there these days. I don’t want to substitute Seroquel for another herbal pill or tea or something to help me sleep, because I would still be relying on something to make me tired. I know this helps many others and I understand and respect that, but I just hope to be able to do this on my own. I also plan to exercise more and try and lose this weight. Hopefully that will help to make me tired too. I also plan on eating more fish for omega 3’s to try and support my brain to cope with this entire trauma. I have a couple of wonderful girlfriends who are supportive and who I can talk to – most of all, they understand what I am going through and I honestly don’t know what I would do without them and my fiancé who is there for me every step of the way.

    I just want this nightmare of Seroquel to be over and thankful that I can find others like me on sites like this and realise I am not alone and that I can do this and be free of Seroquel forever.