PCGirl Posted July 24, 2015 Share Posted July 24, 2015 Hope I'm posting in the right place.... In a nutshell: Prescribed Seroquel fast-acting about 8 years ago for insomnia. I also had waking dreams or what some call night terrors. Some night auditory hallucinations. A couple years later a psych diagnosed me Bipolar 1 w/ psychotic features (due to the nightmares, etc.). For the past 5 years I've been on a cocktail of Lithium, Duloxetine, Methylphenidate and Lamictal. I have tried numerouse times to get off Seroquel because of many side-effects, mostly being fatigue, weight gain, tummy pains and headaches. If I go 24 hours without a dose I vomit for hours, no sleep, anxiety, I want to die. A year ago my eye doctor was surprised to find that I have Lattice Degeneration. The last few months my eyes have become blurry at times, pressure, they don't feel right. I see flashes sometimes and never seem in focus, even with my latest prescription. I am going off this med ASAP. The doc told me to go from 200mg to 150. I cut the pill from 200 to 100mg last night. I slept fairly well. I'm anxious, my eyes hurt as usual, and I feel like I've been permanently poisoned. I happened upon your forum and saw an article about a woman who attributed her macular degeneration to Seroquel. If this is likely the cause, I want to go to a law firm and file a lawsuit. I'm scared to death to go through withdrawals, but I want off now. Any support is appreciated. I plan to stay on 100mg for the next week with my husband close by. I will also check in with doc. Seroquel fine print says that withdrawals usually subside after a week. Is it something I should just get through? Has anyone else heard about Seroquel and eye problems? I'm very scared as the eye doc was perplexed at why I had such pronounced tears in my retinas at age 37. I'm going to the eye doctor in early August. Also, I intend to stay on the other meds as usual until off Seroquel and will probably stay on Lithium. thanks Link to comment
Moderator brassmonkey Posted July 24, 2015 Moderator Share Posted July 24, 2015 (edited) Hi PCGIRL-- Welcome to the group, I'm at work right now and break time just ended so I can't talk long; Please take a look at the following link to get info about the taper you are wanting to do. Tips for tapering off Seroquel (quetiapine) More later.. Edited July 24, 2015 by Altostrata fixed link 20 years on Paxil starting at 20mg and working up to 40mg. Sept 2011 started 10% every 6 weeks taper (2.5% every week for 4 weeks then hold for 2 additional weeks), currently at 7.9mg. Oct 2011 CTed 15oz vodka a night, to only drinking 2 beers most nights, totally sober Feb 2013. Since I wrote this I have continued to decrease my dose by 10% every 6 weeks (2.5% every week for 4 weeks and then hold for an additional 2 weeks). I added in an extra 6 week hold when I hit 10mg to let things settle out even more. When I hit 3mgpw it became hard to split the drop into 4 parts so I switched to dropping 1mgpw (pill weight) every week for 3 weeks and then holding for another 3 weeks. The 3 + 3 schedule turned out to be too harsh so I cut back to dropping 1mgpw every 4 weeks which is working better. Final Dose 0.016mg. Current dose 0.000mg 04-15-2017 "It's also important not to become angry, no matter how difficult life is, because you can loose all hope if you can't laugh at yourself and at life in general." Stephen Hawking Link to comment
Administrator Altostrata Posted July 24, 2015 Administrator Share Posted July 24, 2015 Welcome, PCGirl. I've moved your topic to the Introductions forum. You can post updates to this topic and keep your progress all in one place. You're in a tough situation, with the potential adverse effect to your eyes versus withdrawal syndrome. I hope the decrease from 200mg to 100mg agrees with you. I would give it 2 weeks at least to see if you get withdrawal symptoms, which can be delayed. Adverse effects are usually dosage-related; the reduction in dosage alone can reduce eye effects. Since you're taking Seroquel for sleep, one potential withdrawal symptom can be disrupted sleep, which can be very grueling. To minimize withdrawal symptoms, we generally recommend 10% reductions per month, see Why taper by 10% of my dosage? Please put ALL the drugs you take in the Drug Interactions Checker http://www.drugs.com/drug_interactions.html and copy and paste the results in this topic. This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner. "It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein All postings © copyrighted. Link to comment
PCGirl Posted July 25, 2015 Author Share Posted July 25, 2015 Thanks Brass monkey! I need to get to sleep, but will read those tips tomorrow! Link to comment
PCGirl Posted July 25, 2015 Author Share Posted July 25, 2015 Welcome, PCGirl. I've moved your topic to the Introductions forum. You can post updates to this topic and keep your progress all in one place. You're in a tough situation, with the potential adverse effect to your eyes versus withdrawal syndrome. I hope the decrease from 200mg to 100mg agrees with you. I would give it 2 weeks at least to see if you get withdrawal symptoms, which can be delayed. Adverse effects are usually dosage-related; the reduction in dosage alone can reduce eye effects. Since you're taking Seroquel for sleep, one potential withdrawal symptom can be disrupted sleep, which can be very grueling. To minimize withdrawal symptoms, we generally recommend 10% reductions per month, see Why taper by 10% of my dosage? Please put ALL the drugs you take in the Drug Interactions Checker http://www.drugs.com/drug_interactions.html and copy and paste the results in this topic. Here are the results....don't look good! http://www.drugs.com/interactions-check.php?drug_list=1430-0,1463-0,1477-0,1606-0,949-2273,1979-1274 Link to comment
oskcajga Posted July 25, 2015 Share Posted July 25, 2015 Welcome, PCGirl. I've moved your topic to the Introductions forum. You can post updates to this topic and keep your progress all in one place. You're in a tough situation, with the potential adverse effect to your eyes versus withdrawal syndrome. I hope the decrease from 200mg to 100mg agrees with you. I would give it 2 weeks at least to see if you get withdrawal symptoms, which can be delayed. Adverse effects are usually dosage-related; the reduction in dosage alone can reduce eye effects. Since you're taking Seroquel for sleep, one potential withdrawal symptom can be disrupted sleep, which can be very grueling. To minimize withdrawal symptoms, we generally recommend 10% reductions per month, see Why taper by 10% of my dosage? Please put ALL the drugs you take in the Drug Interactions Checker http://www.drugs.com/drug_interactions.html and copy and paste the results in this topic. Here are the results....don't look good! http://www.drugs.com/interactions-check.php?drug_list=1430-0,1463-0,1477-0,1606-0,949-2273,1979-1274 You're taking all those drugs right now? Link to comment
PCGirl Posted July 25, 2015 Author Share Posted July 25, 2015 Yes OSK, have been for at least the last 3-4 years. I think its too much, I don't even know what helps and what doesn't. Docs just say to make 1 change at a time, and I always give up on getting off of them because I couldn't get off of Seroquel. Link to comment
Administrator Altostrata Posted July 25, 2015 Administrator Share Posted July 25, 2015 Here are the results....don't look good! http://www.drugs.com/interactions-check.php?drug_list=1430-0,1463-0,1477-0,1606-0,949-2273,1979-1274 You can see how this cocktail is rough on your nervous system. Was it one doctor who prescribed all these psychiatric drugs? How did you determine it was Seroquel triggering your eye condition? This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner. "It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein All postings © copyrighted. Link to comment
oskcajga Posted July 25, 2015 Share Posted July 25, 2015 I think its too much, Yes, that's a very impressive quantity of drugs your taking. I was once taking like 5 different medications - so I know how large and impressive those pharmacy visits can get. I'd spend like $100 or more every time I went - and this was with like 10 or $20 copays. I remember one year I just collected all the empty containers for like 3-6 months and ended up having like 2 garbage bags full of empty bottles that I eventually did away with. One time a pharmacist even said directly to me "That's a lot of medication". I worked with a doctor and over a year or so I tapered everything down and was OK - so there's hope that you'll be just fine Link to comment
PCGirl Posted July 26, 2015 Author Share Posted July 26, 2015 I know, I'm embarrased to go to the pharmacy! It started 8 years ago with Seroquel @ 300mg and Celexa 20mg. Lessened psychosis symptoms (waking dreams, night hallucinations, and noisy brain). Then a different doctor when I moved to a different state determined I was Bipolar1. Made sense. He put me on Lamictal to control spikes in mania and depression. Seemed to help, but still had major mania and bad behavior. So he also added a small dose of Lithium. Then I was so tired and could never focus so he added the Methylphenidate. He was a very well known and highly respected doctor, even though he got caught in a Rx dealing ring. Then when I moved to Utah, went to the community mental health agency for med checks, and as many of you know, the amount of meds I'm on isn't that shocking to a Psychiatrist, and I told him a few years ago I wanted off some, that I didn't even know what worked. So I am sticking to one change at a time, but I am hitting the Seroquel tapering a little aggressively under the watchful eye of my husband. Last week I was at 200mg nightly, last two nights I've been at 100mg. I feel decent, tummy issues, a little anxious, and although I slept pretty well last night, at around 5a I began waking every 15 minutes. So I got up at 8a and am very tired all day, but went on a bike ride and am trying to drink lots of water. My husband is watching me like a hawk, so I'm not too worried. What I am worried about is getting into a panic and then taking the regular amount. I would rather feel miserable and be off this stuff in a month, then drag it on for another 3 months. I know this goes against what you suggest. I'm just so tired of Seroquel. I already have more energy. Not sure Seroquel caused the eye problem, I just have heard that it has been known to with cataracts, and I have heard that other people have mentioned they thought it caused degeneration issues like mine. My optamologist was surprised how quickly it came on and that at 38 it is so pronounced. I won't go blind, but my eyes do hurt and get blurry often. I definitely don't want to risk it. Link to comment
Moderator Emeritus JanCarol Posted July 30, 2015 Moderator Emeritus Share Posted July 30, 2015 It's on the Seroquel insert, that patients should have their eyes examined every six months on this drug. It's well known for causing eye problems, some beagles went blind (cateracts, I believe) on high dose seroquel. Please complete your signature, How to complete your Signature so that we know what's up with you at a glance instead of having to read all of your posts. Welcome to SA! "Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna Holding is hard work, holding is a blessing. Give your brain time to heal before you try again. My suggestions are not medical advice, you are in charge of your own medical choices. A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia. CT Seroquel 25 mg some time in 2013. Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine). Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 - Feb 2016 = GONE (10 years on Lithium). Many mistakes in dry cutting dosages were made. The tedious thread (my intro): JanCarol ☼ Reboxetine first, then Lithium The happy thread (my success story): JanCarol - Undiagnosed Off all bipolar drugs My own blog: https://shamanexplorations.com/shamans-blog/ I have been psych drug FREE since 1 Feb 2016! Link to comment
Administrator Altostrata Posted July 30, 2015 Administrator Share Posted July 30, 2015 PCGirl, I would hold on the 100mg Seroquel for a bit, let your nervous system settle down from that big change. Adverse effects are generally dosage-related, so you've done your eyes a favor already. When did the "mania and bad behavior" start? If I were you, I'd research each of your drugs one by one to see which is known for causing eye conditions. See Taking multiple psych drugs? Which drug to taper first? This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner. "It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein All postings © copyrighted. Link to comment
Moderator Emeritus manymoretodays Posted August 5, 2015 Moderator Emeritus Share Posted August 5, 2015 Welcome PCgirl. Fill in your signature when you can. I also sent you a msg. as we are neighbors!!!!! And am kind of excited about that. I used to get "scream dreams" on Seroquel, first XR and then regular. Poor recollections of the dreams but became panicy in my sleep......always a running away scenario but couldn't see or couldn't move or something..... and trying to scream while asleep......then finally was able and awoke. Pretty much freaked out my entire household at the time. The eyes.......hmmmm........I needed reading glasses by my early 40's........none of my siblings needed them until much later. And I have continued to progress as far as what I need......from plus 100 to plus 200. I know several people on medication still who have had to have surgery for macular degeneration at early ages. Pretty sure it is due to the atypical antipsychotic/tranquilizers. Anyway.......do the signature thing and I highly recommend that you read Anatomy of an Epidemic for starters and then decide what you want to do. I was sent into a bipolar diagnosis as well after 2 high dose AD's and shortly after withdrawing from an old school AD called an MAOI. I also developed gastroesophogeal reflux on Seroquel.......cholesteral and triglycerides increased......oh probably more but they remitted once I was off it. Interesting that I found your post tonight though too........as I feel like in some ways I am revisiting my Seroquel withdrawal for various reasons. Anyway more in my msg. and welcome aboard. Late 2023- gone to emeritus status, inactive, don't @ me, I can check who I've posted on, and I'm not really here like I used to be......thanks. Started with psycho meds/psychiatric care circa 1988. In retrospect, and on contemplation, situational overwhelm. Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time). 5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014) 12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs. My last psycho med ever! Tapered @ 10% every 4 weeks, sometimes 2 weeks to 2016 Dec 16, medication free!! Longer signature post here, with current supplements. Herb and alcohol free since 5/15/2016. And.....I quit smoking 11/2021. Lapsed. Redo of quit smoking 9/28/2022. Can you say Hallelujah?(took me long enough)💜 None of my posts are intended as medical advice. Please discuss any decisions about your medical care with a knowledgeable medical provider. My success story: Blue skies ahead, clear sailing Link to comment
leahy Posted August 31, 2015 Share Posted August 31, 2015 Hi PCgirl, Your posts reminded me of how this (meds) started so many years agao in my 40's actually. I was having night terrors. I went to many different kinds of doctors. Some called them hypnagogic hallucinations, night terrors, PTSD, sleep apnea... Nothing was helping me. This went on and on for years. I would scream in the voice of a 6 yr old child for my mother. It freaked everyone out, especially me. After visiting and working with numerous therapists, it was decided I wasn't happy in my marriage. So now I'm divorced. THAT was just plain stupid and unnecessary. Oh, well. I found your thread when googling SA and eye problems. Last night I awoke at 5 AM sick to my stomach, headache and dry gritty eyes. My eyes hurt so much. This happens often. Several years ago my eye doctor told me I had no tears - no moisture in my eyes. He also found an irregularity that he suspected as macular degeneration. It's only NOW that I realize it is the Remeron a strong antihistamine that's been drying me out for 16 years. I see a retina specialist and am monitored every 6 months. I'm hoping by tapering off that my eyes will recover. Both doctors insist I take lutein. I use a supplement - Preservavision and CoQ10. I hope this helps. Good healing to you, Leahy 2001-2007 Rem 90 mg, xanax 2 mg synthroid 112mcg - 2007-2014 Rem 60 mg xanax 3-4 mg 2015 Feb Rem 45 mg xanax 2 mg, March Rem 30 xanax 2, April Rem 22.5, May Rem 30 xanax .25x4 hrs, June Rem 26 xanax 2-3, July Rem 22.5 xanax 2, Aug Rem 15 xanax 2, Sept Rem 22 xanax 2, Oct Rem 18 mg xanax .25 mg /4 hrs, Nov Rem 23 mg xanax .5mg, Dec Rem 24 xanax 2 2016 Jan Rem 20 xanax 2, Feb Rem 18 mg xanax 1.5, Feb Rem 14 12 mg xanax 1 mg, March Rem 10 9 mg xanax 1-2 mg Rem 7.3 8 xanax 1-2, April Rem 10 12 mg xanax 2 mg, May Rem 11 xanax 1 .75mg Nov Rem 10mg Xanax 2mg 2017 May Rem 10.25 Xanax 1 mg, November Xanax 1mg Link to comment
PCGirl Posted October 26, 2015 Author Share Posted October 26, 2015 Hello everyone... I'm diagnosed Bipolar 1 and I'm a victim of the doctor's suggestion of "making only gradual changes at a time." I am way over-medicated, but my mood jumps around so much, as do manic episodes in the past, that I don't know what changes to make. I will be going to a new psychiatrist soon, however I'm still waiting on an appointment (a few weeks out). I will see my PCP, but I want some insight into what meds I really do need, and which are possibly making things worse. I will run any suggestions by my PCP before making any changes. I ran a med check online and see that several of my meds could be contradicting/causing side effects that I don't want or need. It started with Seroquel and Duloxotine, which after five years I've cut down. For the past 3 months I was weaning myself off of Seroquel, then the anxiety, panic and insomnia hit, so I realized I may just need to keep that one. A few years ago Lamictal added for Bipolar/Mania symptoms, then Lithium added since I tend to go manic more. I thought I was supposed to get off of Lamictal or Duloxetine, since Lamictal helps depression a little more...so do I really need it when I take Duloxetine? A month and a half ago I fell into a really deep depression, no motivation, apathy, and barely able to handle teenage kids (both diagnosed with Asperger's Disorder). They are finally enrolled at a day treatment program at the Neuropsychiatric Institute, wherein I sit around on my computer in the coffee shop every day while they are in school/therapy for 8 hours. So you'd think I'd be able to find some advice there! Through all of this my PCP added Wellbutrin, which is really helping. There is a light at the end of the tunnel, and I finally have time to continue my education. The problem is that I'm tired all the time. I feel horrible right now, I can sleep 8 hours and feel like I slept 2! I have trouble concentrating, and at 39 years old, I'm about to start work on finisihng my degree at the University of Utah (Consumer Health Bachelor of Science - Pre-Physician Assistant Track). I am capable to finish my degree, and if I can get control of my brain and fatigue, I will be able to be licensed as a Physician's Assistant in 4 years. Then hopefully I can help others with these same issues.....I thank you in advance for any advice... Lithium- 900mg per day Lamictal- 100mg per day Wellbutrin- 300mg per day Levothyroxine- 100mg per day Duloxatine- 60mg per day Seroquel- 100mg per day Link to comment
Moderator Emeritus Petunia Posted October 26, 2015 Moderator Emeritus Share Posted October 26, 2015 PCGirl, I moved your post here to your Intro/Update topic, because it was related to your own situation specifically. Please add information and updates about your changing circumstances, and ask questions here, bookmark or follow it so you can find it again. You are probably feeling so unwell because of all the drugs you are taking, please look back through this topic and read through the links you have been given. Since you last posted, it looks like methylphenidate was switched for Wellbutrin? It would be great if you would put your drug and withdrawal history in your signature. Doing this helps people understand your context, it appears below each of your posts. Here are instructions for how to do it: http://survivinganti...your-signature/ I'd highly recommend reading Anatomy of an Epidemic by Robert Whitaker. Psych meds can cause harmful side effects and long term, they can worsen health, increasing the risk of other illnesses. In my opinion they should only be used for short times and very cautiously, if at all. Other resources you may find helpful are Your Drug may be you Problem by Dr. Peter Breggin and Council for Evidence Based Psychiatry Petunia. I'm not a doctor. My comments are not medical advise. These are my opinions based on my own experience and what I've learned. Please discuss your situation with a medical practitioner who has knowledge of tapering and withdrawal...if you are lucky enough to find one. My Introduction Thread Full Drug and Withdrawal History Brief Summary Several SSRIs for 13 years starting 1997 (for mild to moderate partly situational anxiety) Xanax PRN ~ Various other drugs over the years for side effects 2 month 'taper' off Lexapro 2010 Short acute withdrawal, followed by 2 -3 months of improvement then delayed protracted withdrawal DX ADHD followed by several years of stimulants and other drugs trying to manage increasing symptoms Failed reinstatement of Lexapro and trial of Prozac (became suicidal) May 2013 Found SA, learned about withdrawal, stopped taking drugs...healing begins. Protracted withdrawal, with a very sensitized nervous system, slowly recovering as time passes Supplements which have helped: Vitamin C, Magnesium, Taurine Bad reactions: Many supplements but mostly fish oil and Vitamin D June 2016 - Started daily juicing, mostly vegetables and lots of greens. Aug 2016 - Oct 2016 Best window ever, felt almost completely recovered Oct 2016 -Symptoms returned - bad days and less bad days. April 2018 - No windows, but significant improvement, it feels like permanent full recovery is close. VIDEO: Where did the chemical imbalance theory come from? VIDEO: How are psychiatric diagnoses made? VIDEO: Why do psychiatric drugs have withdrawal syndromes? VIDEO: Can psychiatric drugs cause long-lasting negative effects? VIDEO: Dr. Claire Weekes Link to comment
Moderator brassmonkey Posted October 26, 2015 Moderator Share Posted October 26, 2015 Hi PCGirl-- Please enter all of your current drugs into the drug interaction checker and copy and paste the results back here Drug Interactions Checker -- use it to reduce your drug burden 20 years on Paxil starting at 20mg and working up to 40mg. Sept 2011 started 10% every 6 weeks taper (2.5% every week for 4 weeks then hold for 2 additional weeks), currently at 7.9mg. Oct 2011 CTed 15oz vodka a night, to only drinking 2 beers most nights, totally sober Feb 2013. Since I wrote this I have continued to decrease my dose by 10% every 6 weeks (2.5% every week for 4 weeks and then hold for an additional 2 weeks). I added in an extra 6 week hold when I hit 10mg to let things settle out even more. When I hit 3mgpw it became hard to split the drop into 4 parts so I switched to dropping 1mgpw (pill weight) every week for 3 weeks and then holding for another 3 weeks. The 3 + 3 schedule turned out to be too harsh so I cut back to dropping 1mgpw every 4 weeks which is working better. Final Dose 0.016mg. Current dose 0.000mg 04-15-2017 "It's also important not to become angry, no matter how difficult life is, because you can loose all hope if you can't laugh at yourself and at life in general." Stephen Hawking Link to comment
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