JoJo90 Posted October 25, 2019 Share Posted October 25, 2019 (edited) Hello all I’ve been searching on this site for a while I’ve seen a lot of posts can anyone shed shed some light. There is a lot more to my story but tying to keep it short as possible So here goes I started my very first prescription drug flupentixol around 19 years old I am now 28 I can’t even really remember much about that time I had really bad anxiety/panic attacks distorted mood. So dr prescribed and I took it. Through out them years had many ups and downs. I used to drink a lot so most of my younger years I can’t remember much I think I just blocked a lot of it out and put a lot of my issues aside. In this time though I wasn’t depressed I just didn’t really have a purpose in life. Most of the time on this drug it was great. 2017 I started getting a lot more issues had a lot of stressors going on in my life I took a turn experienced what I would call sort of a psychotic episode couldn’t think clearly was so confused thought I was going insane, in desperation not knowing anything about ADs I upped my dose for a few days and nothing still felt insane with thoughts It carried on with intense crying spells and hopelessness. I went back to GP and they prescribed me citalopram had a really bad reaction but still managed 17 days of torture. Was told to immediately come of the medication and side effects reduced soon after. (Still on flupentixol) Although I still wasn’t back to myself I was prescribed Mirtazapine 15mg and felt better after one week. The only side effects I had were RLS and weight gain. I decided to come off as I thought I was feeling better but also was putting on weight. I tapered as per GP’s advice alternate days with in four weeks I was completely off. (Still on flupentixol) Roughly 2 months later I had a small trigger I immediately spiralled back into a depressed state. I wanted to try with out any medication (self-help books, exercise) I wasn’t getting any better after 5-6 months later. I then took another major turn. I decided that the only thing that would help was another AD. Came off flupentixol within few months Gp said to come straight off as wouldn’t get withdrawal from that type of drug. I visited my GP who referred me to the mental health team who prescribed me duloxetine as they thought would help with my spinal pain (scheuermann's disease) I lasted 5 days roughly and came off as the anxiety was so intense. So I went back to Mirtazapine yes In the beginning I got the usual sedation like effects. The longer I was on it though the more I started to lose myself. I had paranoia. Extreme dread (especially upon waking) suicidal, anxiety as time went on, GI issues/trouble breathing, visual disturbances (blurred vision, floaters) Dilated pupils,Teeth clenching worsened Depression/hopelessness,Constant rumbling in belly, Heavy pulse in stomach Anxiousness/irritability, Extreme health anxiety Constant state of fear, Restlessness, Palpitations,Abnormal thinking/distorted mood Sadness,Tinnitus/full ears,Hungover feeling in the morning, Headache/neck ache Mouth sores/funny taste in mouth, Random body pain, Cold feet,Hot flushes,Itching, Lower back pain, Abnormal dreams,Voice changes Body jerks/spasms, Chest pain/rib pain Lumpy painful groin,Sensitive to pain Painful hands and feet, Nausea,Anger/overwhelmed,Early satiety,No appetite,Flu like symptoms/malaise,Tingling sensations Sharp/stabbing head pains,Depersonalisation Pulsating In ear I never had most of these side effects before Mirtazapine i went on for mainly depression and few other issues (possibly wd from last year?) I’ve been off them completely for 8 weeks now. A lot of symptoms have dropped off but a lot of them are still ongoing. I don’t get why I’ve had such adverse side effects this time around on and now off the drug? 1st week of coming off, extreme nausea and flu like symptoms, sweating/clammy. Anxiousness. Diarrhoea Current ongoing issues intermittently Pain in ribs, chest, also lower back aching pain which didn’t have with my spinal condition before. (Seemed to have eased for now) Hands and feet painful Hips, bum. Excruciating head pains but also over sensitised to pain, front of neck, jaw, groin, allergies- catarrh, itchy roof of mouth nose, lost sense of taste. Ongoing GI issues(never had issues with this before Mirtazapine) currently being investigated for celiac and other diseases. Awaiting results from endoscopy biopsy. Intense emotional lows Intense anger occasional paranoia Blurry vision/floaters sensitivity to light Sensitivity to sound, tinnitus Poor cognitive function - Confusion, brain fog, memory issues. Extreme Depression,Extreme fatigue, Nausea,Poor body temperature regulation,Extreme Health anxiety/fear I’m convinced I have cancer or some serious disease. Painful teeth and gums. (Could be due To the teeth clenching) There is prob a few more I haven’t listed I’m constantly looking up my symptoms. The ones I’m worried about most is my weight loss (underweight) I can’t seem to put on any weight which scares me, and I’m full quickly after eating, although I have lost appetite a bit I do eat often! All my symptoms point to cancer. Also the intense emotions that come across feel so overwhelming it’s scary it’s like my cortisol is so so high! Anything little my stress response can’t handle it. This has been a real struggle writing this and it’s taken me weeks. My Taper would be considered CT. My GP’s great advice alternate days for 2 weeks then come off. Although I took it slower and came off Mirtazapine with 2 months. I couldn’t handle the adverse effects anymore they were making me sicker. Although I’ve had some better hours what I’ve seen people call windows. This last week I’m going through a wave I can’t get off. I’m so confused by all of this and disheartened is it the drugs that have done this to me or is it a serious illness. I have never felt so unwell in my life physically and mentally. Part of me thinks it’s wd related and the other part is saying it’s not. I’ve not had many days without pain. Another thing to mention I did a genetic test and have many mutations Including MTHFR, COMT. My report flags up red for AD response. Also have a variant gene for celiac disease. I’m possibly deficient in a lot of things maybe hence the weight loss etc. Malabsorption issues which is being looked into Also early hours this morning my Fitbit says I was awake for 15 min and I’ve noticed I’ve taken random pics on my phone of the floor etc which I can’t remember doing! I don’t know if reinstatement would be a good idea I wasn’t Even stable on the drug it’s changed my life I’m scared Please someone with a similar story or advice help me out. I just feel like giving up Edited April 7, 2021 by ChessieCat reduced font size 2011 - 1-3mg Flupentixol - Dec 2018 CT 2017 - 15mg Citalopram - lasted 17 days then CT 2018 - 15mg Mirtazapine - 6 months then CT 2019 - 20mg Duloxetine - lasted 5 days then CT 2019 - 7.5-30mg Mirtazapine - April to August, 30mg-0mg within two month period 2019 lansoprazole 30mg may-July 2019 omeprazole 20mg aug-sept Link to comment
Administrator Altostrata Posted October 27, 2019 Administrator Share Posted October 27, 2019 Welcome, JoJo. Thanks for putting your recent history in your signature. Please add drug dosages. You should review this https://bnf.nice.org.uk/drug/flupentixol.html and read up on adverse effects from flupentixol. It appears you have had withdrawal syndrome from this drug since you came off too fast in 2018. On 10/25/2019 at 9:41 AM, JoJo90 said: I used to drink a lot so most of my younger years I can’t remember much I think I just blocked a lot of it out Most likely, it was excessive drink that caused your original symptoms. Have you continued to drink alcohol occasionally since you started flupentixol in 2011? It looks to me like 1) you have had withdrawal syndrome from flupentixol since you came off too fast in 2018; 2) your adverse reactions to antidepressants such as citalopram are probably due to hypersensitivity from flupentixol withdrawal; 3) your history of going on and off psychiatric drugs, adverse reactions, and cold turkey has likely made your nervous system hypersensitive to all psychiatric drugs and psychoactive substances such as alcohol; 4) mirtazapine has been some help but the dosage was too high and caused adverse reactions from your sensitized system. It appears that now insomnia is one of your major symptoms? Do you have any mirtazapine left? (We all have genetic variations; for the most part, they are not meaningful in dealing with adverse drug reactions.) 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
JoJo90 Posted October 27, 2019 Author Share Posted October 27, 2019 1 hour ago, Altostrata said: Welcome, JoJo. Thanks for putting your recent history in your signature. Please add drug dosages. You should review this https://bnf.nice.org.uk/drug/flupentixol.html and read up on adverse effects from flupentixol. It appears you have had withdrawal syndrome from this drug since you came off too fast in 2018. Most likely, it was excessive drink that caused your original symptoms. Have you continued to drink alcohol occasionally since you started flupentixol in 2011? It looks to me like 1) you have had withdrawal syndrome from flupentixol since you came off too fast in 2018; 2) your adverse reactions to antidepressants such as citalopram are probably due to hypersensitivity from flupentixol withdrawal; 3) your history of going on and off psychiatric drugs, adverse reactions, and cold turkey has likely made your nervous system hypersensitive to all psychiatric drugs and psychoactive substances such as alcohol; 4) mirtazapine has been some help but the dosage was too high and caused adverse reactions from your sensitized system. It appears that now insomnia is one of your major symptoms? Do you have any mirtazapine left? (We all have genetic variations; for the most part, they are not meaningful in dealing with adverse drug reactions.) Hi Altrostrata yes I continued to drink I did a lot of binge drinking while being on flupentixol. I no longer binge drink haven’t for past couple years. 2. My adverse reaction on citalopram I’m not sure why but I was still taking flupentixol. Maybe the two interacted? 4. The dosage first started on Mirtazapine this year was 7.5mg and my GP Increased it every few weeks. I believe it just made me sicker each time I worked my way up to 30mg but couldn’t take the adverse effects anymore. So dropped back down over a couples of months and came off at 7.5. I am actually managing sleep it’s just a bit fragmented some nights. No insomnia though. so in regards to my genetics if I’m not absorbing essential vitamins (deficient in b12, folate, vit D) because of these mutations. Wouldn’t it be a sensible thing to get these things corrected with adequate supplementation, as my diet is not allowing this for some reason. thank you for your reply 2011 - 1-3mg Flupentixol - Dec 2018 CT 2017 - 15mg Citalopram - lasted 17 days then CT 2018 - 15mg Mirtazapine - 6 months then CT 2019 - 20mg Duloxetine - lasted 5 days then CT 2019 - 7.5-30mg Mirtazapine - April to August, 30mg-0mg within two month period 2019 lansoprazole 30mg may-July 2019 omeprazole 20mg aug-sept Link to comment
Administrator Altostrata Posted October 28, 2019 Administrator Share Posted October 28, 2019 You cannot drink AT ALL when you're in this state, or it will exacerbate your symptoms. Are your genetic mutations homozygous or heterozygous? Homozygous is rare. Heterozygous MTHFR mutations are so common they're normal. To compensate for any folate metabolism irregularity, eat lots of green leafy vegetables. The "red flags" for "AD response" are not meaningful. Was the mirtazapine supposed to act as an antidepressant for you? Overall, how has your symptom pattern and sleep changed in the last few weeks? How much sleep do you get now? A lot of people find fish oil and magnesium supplements helpful, seehttps://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/ Try a little bit of one at a time to see how it affects you. 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
JoJo90 Posted October 28, 2019 Author Share Posted October 28, 2019 1 hour ago, Altostrata said: xacerbate your symptoms. Are your genetic mutations homozygous or heterozygous? Homozygous is rare. Heterozygous MTHFR mutations are so common they're normal. Yes homozygous MTHFR Also homozygous CBS on my main methylation profile. There are many other homozygous I don’t know the importance to those though. Yes lots of hetero Yes the Mirtazapine was being used mainly as an antidepressant. Instead made me ten times worse. My symptoms are very disorganised. I could be feeling optimistic for maybe 20 sec and then I could be hopelessly depressed. The extreme head pressure in the beginning has dropped off a little. I am struggling these past few weeks with a lot of mood changes extreme irritation/anger, crying spells, it’s like PMS most days, that’s the best way I can describe it. Also feels as though I’m brain damaged I can’t think properly. My sleep has somewhat improved although I never wake up rested. I’m always tired. I have been taking fish oil and magnesium over a year. I’m not sure if it’s helping or not as I’m experiencing a lot right now. I have always had lingering issues physical and mental but I have never felt this deteriorated and helpless before. Also always had a little health anxiety but never to the extent of googling 20 x a day. Jo 2011 - 1-3mg Flupentixol - Dec 2018 CT 2017 - 15mg Citalopram - lasted 17 days then CT 2018 - 15mg Mirtazapine - 6 months then CT 2019 - 20mg Duloxetine - lasted 5 days then CT 2019 - 7.5-30mg Mirtazapine - April to August, 30mg-0mg within two month period 2019 lansoprazole 30mg may-July 2019 omeprazole 20mg aug-sept Link to comment
Administrator Altostrata Posted October 28, 2019 Administrator Share Posted October 28, 2019 20 minutes ago, JoJo90 said: My sleep has somewhat improved Please provide more detail. Stop anxious Googling. Get out for at least one-half hour of walking every day. This helps your nervous system recover. Stop worrying about genetic mutations. We all have them. Homozygous MTHFR is important in pregnancy. 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
JoJo90 Posted October 28, 2019 Author Share Posted October 28, 2019 I’m staying asleep for longer periods instead of waking up every hour. I’ve been able to take a few naps which is new. I walk everyday regardless of how hard it can be sometimes. I nearly cancelled my holiday to Mexico because of my current situation I was nervous of the long flight and many other things. I struggled a lot while away but I did it. I do not spend a lot of time Indoors but it doesn’t make it any easier Id just rather be distracting myself a lot of the time. In regards to my genetics I do believe somewhat it could be of importance. MTHFR is incredibly important if It is expressing. Before any medication I’ve not been a well person so I am ruling everything out one by one. (Deficiency’s etc) Yes what I am going through now with Wd symptoms are exacerbating everything. However at the same time it has opened my eyes to many symptoms I have had over the years and why it could be. To tell someone to stop worrying is not very helpful as I’m sure you know all to well. 2011 - 1-3mg Flupentixol - Dec 2018 CT 2017 - 15mg Citalopram - lasted 17 days then CT 2018 - 15mg Mirtazapine - 6 months then CT 2019 - 20mg Duloxetine - lasted 5 days then CT 2019 - 7.5-30mg Mirtazapine - April to August, 30mg-0mg within two month period 2019 lansoprazole 30mg may-July 2019 omeprazole 20mg aug-sept Link to comment
Administrator Altostrata Posted October 29, 2019 Administrator Share Posted October 29, 2019 Good to hear you are seeing some improvement in your sleep. Healing is very gradual, in The Windows and Waves Pattern of Stabilization Worry as much as you want, and exacerbate it by Googling and dwelling on worst-case scenarios. Stay at the computer and don't get any exercise. You're welcome. 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
Phoenix1111 Posted October 30, 2019 Share Posted October 30, 2019 Hi @JoJo90, Just thought i'd weigh in here because i too am Homozygous MTHFR in a1298c gene (double mutation) and while it's apparently "better" than having mutations in the c677t gene I found that the compounded vitamin supplement with a mix of zinc picolinate, P5P, Methyl B12, Folinic acid, magnesium (among some others) was life saving for me and helped me WAY more than 13 years (at the time of diagnosis) of antidepressants ever did. If you do have this mutation it is very important you get the correct activated vitamins prescribed because your body may not be able to activate normal off the shelf vitamins (which was the case for me) - basically my brain was starved of nutrients because my body could not process or activate them which is going to cause anybody to feel anxious and depressed. Once i was given the correct supplements for my body i was honestly a new person! Except of course while i am going through Antidepressant withdrawal - that's a whole different ball game, but i do believe these supplements are very powerful and have better equipped me to be able to handle WD. Please take a look at this link to find a MTHFR practitioner near you, (just click on practitioner directory and find a practitioner) https://www.mthfr-genetics.co.uk/ I'm not sure if you were prescribed any compounded vitamins as i'm unsure of the ins and out of your Mthfr mutation/s, but if i were you i would be seriously looking into this before doing any further withdrawals from meds. Just my humble opinion from personal experience. I hope this helps, even if in some small way. 2000 - Aropax, Zoloft and other various ssri's 2008?? - Lovan 40mg 2016 Nov - Mirtazapine 15mg after failed Lovan fast taper (didn’t know better) 2017 Dec - Started slow taper - 2019 July 0.5mg (crashed) 2019 July - Mirtazapine 15mg reinstated 2019 Aug - Started Vortioxetine 20mg and stopped Lovan 40mg 2019 Nov 3rd - Stopped Vortioxetine and went back up to 40mg Lovan and holding 2020 Sep - Windows and waves.... still holding on 15mg Mirtazapine and 40mg Lovan Link to comment
PoetJester Posted October 30, 2019 Share Posted October 30, 2019 Hi Jojo I had a lot of the same symptoms on Mirtazapine, especially the voice changes. I lost the entire upper range of my voice, like my voice was on a leash and i sounded like a different person altogether. I read online in another forum of this happenening to someone else where they took Mirtazapine and suddenly couldn't hit any high notes while singing anymore. My ankles and feet swelled up to the point that i couldn't fit into any of my shoes anymore after two months on the drug, which i guess is a kidney related thing. It was a terrible drug for me and coming off it nearly killed me with how bad my sleep became. I was unable to get off my couch for a month straight and had head pressure and crushing nausea and migraines all day, every day. My sleep was so poor that i would wake from two hour sleeps with what felt like almost no brain activity. I kept thinking to myself that this must be how it feels to live inside a nuclear reactor in meltdown, since my brains were doing so badly. I finally had to bike to an ER in a horrible state and get a sleep aide so that i could sleep deeper and function or else i would probably be a corpse on my couch right now, i was so ill. Poetjester. Court committed to take Prozac, Paxci, and Respiradol from 8/95 to 3/96. developed severe akithisia and brain damage. Was unable to speak and walking in circles 15 hours a day. Went in for 5 sessions of ECT during a 10 day period in March of '96 and my forced medication was discontinued at that time. My akithisia and brain damage cleared up within a few days of stopping the meds. On Zoloft (200 mg) and Zyprexa (17.5 mg) March 1998- Feb 2014 In between was placed on Effexor 200 mg and Abilify for six months in 2004. Developed mild akithisia which went away once I stopped the Abilify. Developed severe GI issues in Dec 2001 and from that time on suffered from fatigue and hypersomnia where I would sleep between 12 and 20 hours a day and rarely ever left my apartment. Had tapered to 100 mg of Zoloft and 7.5 mg of Zyprexa at the time of going cold turkey Feb. 2014 Went 5 days without sleep at the beginning while vomiting all over my apt. Had brain zaps for a number of weeks and also lightheadedness which both eventually went away. However 2 1/2 yrs later I still struggle with insomnia, depression, and fatigue. Link to comment
JoJo90 Posted October 30, 2019 Author Share Posted October 30, 2019 12 hours ago, Phoenix1111 said: Just thought i'd weigh in here because i too am Homozygous MTHFR in a1298c gene (double mutation same as me. 12 hours ago, Phoenix1111 said: found that the compounded vitamin supplement with a mix of zinc picolinate, P5P, Methyl B12, Folinic acid, magnesium (among some others) was life saving for me and helped me WAY more than 13 years (at the time of diagnosis) of antidepressants ever did. Could you collaborate? you say vits helped you more than 13years on ADs ever did. Why did you go on ADs? Have you found a practitioner that recommended you these supplements? I will never touch an AD again I was bad on Mirtazapine. I’m still struggling now but I was a completely different person on it. Many many bad effects. How are you doing now, are you off completely? 2011 - 1-3mg Flupentixol - Dec 2018 CT 2017 - 15mg Citalopram - lasted 17 days then CT 2018 - 15mg Mirtazapine - 6 months then CT 2019 - 20mg Duloxetine - lasted 5 days then CT 2019 - 7.5-30mg Mirtazapine - April to August, 30mg-0mg within two month period 2019 lansoprazole 30mg may-July 2019 omeprazole 20mg aug-sept Link to comment
JoJo90 Posted October 30, 2019 Author Share Posted October 30, 2019 9 hours ago, PoetJester said: Hi Jojo I had a lot of the same symptoms on Mirtazapine, especially the voice changes. I lost the entire upper range of my voice, like my voice was on a leash and i sounded like a different person altogether. I read online in another forum of this happenening to someone else where they took Mirtazapine and suddenly couldn't hit any high notes while singing anymore. My ankles and feet swelled up to the point that i couldn't fit into any of my shoes anymore after two months on the drug, which i guess is a kidney related thing. It was a terrible drug for me and coming off it nearly killed me with how bad my sleep became. I was unable to get off my couch for a month straight and had head pressure and crushing nausea and migraines all day, every day. My sleep was so poor that i would wake from two hour sleeps with what felt like almost no brain activity. I kept thinking to myself that this must be how it feels to live inside a nuclear reactor in meltdown, since my brains were doing so badly. I finally had to bike to an ER in a horrible state and get a sleep aide so that i could sleep deeper and function or else i would probably be a corpse on my couch right now, i was so ill. Poetjester. Hi Poet. it sounds as though you’ve had an awful time how are you doing now, how long have you been off them? 2011 - 1-3mg Flupentixol - Dec 2018 CT 2017 - 15mg Citalopram - lasted 17 days then CT 2018 - 15mg Mirtazapine - 6 months then CT 2019 - 20mg Duloxetine - lasted 5 days then CT 2019 - 7.5-30mg Mirtazapine - April to August, 30mg-0mg within two month period 2019 lansoprazole 30mg may-July 2019 omeprazole 20mg aug-sept Link to comment
PoetJester Posted October 30, 2019 Share Posted October 30, 2019 I'm ok. Not too well, but alive. I took Mirtazapine for eight months in 2017-18. My psychiatrist cut off my prescription cold turkey in March of 2018, when i complained over the phone of severe armpit rashes i was getting from the drug. My armpits turned bright red, and itched to the point where i was almost scratching them until they bled. Two doctors told me that it couldn't be from the Mirtazapine, and asked if i had changed deodorant or laundry detergent (of course), but i don't use deodorant and hadn't change laundry detergent, so it was the Mirtazapine. I couldn't get a prescription for anything else without making an appointment at her office, but it was March and the roads were full of snow and her office was eight miles away and i don't drive, so i just went into withdrawal. As you know it was misery. Plus i kept getting texts from my parents while i was incredibly ill on the couch with the headaches and nausea about making sure my food support and government health insurance forms were filled out. I ended up laying on my couch feeling like death for a month. It was about all i could do to walk between my couch and the kitchen for that month and then ended up biking to an ER and getting a prescription for restoril, and later switched to zolpidem and now have been taking Amitriptyline for the past 6 or 7 months. I'm functioning, but not doing a whole lot most days. Court committed to take Prozac, Paxci, and Respiradol from 8/95 to 3/96. developed severe akithisia and brain damage. Was unable to speak and walking in circles 15 hours a day. Went in for 5 sessions of ECT during a 10 day period in March of '96 and my forced medication was discontinued at that time. My akithisia and brain damage cleared up within a few days of stopping the meds. On Zoloft (200 mg) and Zyprexa (17.5 mg) March 1998- Feb 2014 In between was placed on Effexor 200 mg and Abilify for six months in 2004. Developed mild akithisia which went away once I stopped the Abilify. Developed severe GI issues in Dec 2001 and from that time on suffered from fatigue and hypersomnia where I would sleep between 12 and 20 hours a day and rarely ever left my apartment. Had tapered to 100 mg of Zoloft and 7.5 mg of Zyprexa at the time of going cold turkey Feb. 2014 Went 5 days without sleep at the beginning while vomiting all over my apt. Had brain zaps for a number of weeks and also lightheadedness which both eventually went away. However 2 1/2 yrs later I still struggle with insomnia, depression, and fatigue. Link to comment
Phoenix1111 Posted October 31, 2019 Share Posted October 31, 2019 8 hours ago, JoJo90 said: same as me. Could you collaborate? you say vits helped you more than 13years on ADs ever did. Why did you go on ADs? Have you found a practitioner that recommended you these supplements? I will never touch an AD again I was bad on Mirtazapine. I’m still struggling now but I was a completely different person on it. Many many bad effects. How are you doing now, are you off completely? Hi @JoJo90, I'd just like to preface this and say that obviously i am not a medical doctor and you should seek the advice of a professional. The following is simply my story and my personal experience and opinion. When i presented with severe panic/anxiety i was 16/17 years old at the time (i am 36 yo now) so it was around year 2000 and back then i don't think many doctors knew anything about the Mthfr mutations, so their answer was to drug me on antidepressants. I think maybe they dulled some of my nerves a bit but really didn't have much of a positive effect at all for me, i was still struggling to function in everyday life. Then in 2013/2014 i found a Doctor near me (I'm in Sydney Aus) and he suggested testing for Mthfr mutation and i thought i might as well since nothing else was helping, and the results confirmed that i was Homozygous MTHFR in a1298c gene which is rarer than the Mthfr heterozygous a1298c that many people have, as you probably know. He started me on activated forms of vitamins that the mutation was inhibiting my body from being able to process properly and over a period of months (can't remember exactly how long) i started to feel much less anxious and my low mood lifted and i almost felt alive again (i know that probably sounds weird). Although it can take a little time (depending on how severe the deficiencies are). Unfortunately i am going to have to start from scratch with antidepressant weaning, i am in the process of stopping one i was put on 2 months ago (which didn't help much) and once i am stable for a while i will try to wean off of the Mirtazapine AGAIN. In July I was down to 0.5mgs but i believe that i had reduced the lower doses way too quickly and when my mum had to have a serious operation i had a massive meltdown which resulted in reinstating the full 15mgs, had i known better at the time i would have only gone back up a couple of mgs and held. I didn't have enough knowledge at the time to slow the taper down unfortunately , but luckily i found this site which has helped me and i have had a lot of aha moments since finding it Did your doctor start you on any supplements after informing you about the Mthfr mutation? 2000 - Aropax, Zoloft and other various ssri's 2008?? - Lovan 40mg 2016 Nov - Mirtazapine 15mg after failed Lovan fast taper (didn’t know better) 2017 Dec - Started slow taper - 2019 July 0.5mg (crashed) 2019 July - Mirtazapine 15mg reinstated 2019 Aug - Started Vortioxetine 20mg and stopped Lovan 40mg 2019 Nov 3rd - Stopped Vortioxetine and went back up to 40mg Lovan and holding 2020 Sep - Windows and waves.... still holding on 15mg Mirtazapine and 40mg Lovan Link to comment
JoJo90 Posted October 31, 2019 Author Share Posted October 31, 2019 8 hours ago, PoetJester said: I'm ok. Not too well, but alive. I took Mirtazapine for eight months in 2017-18. My psychiatrist cut off my prescription cold turkey in March of 2018, when i complained over the phone of severe armpit rashes i was getting from the drug. My armpits turned bright red, and itched to the point where i was almost scratching them until they bled. Two doctors told me that it couldn't be from the Mirtazapine, and asked if i had changed deodorant or laundry detergent (of course), but i don't use deodorant and hadn't change laundry detergent, so it was the Mirtazapine. I couldn't get a prescription for anything else without making an appointment at her office, but it was March and the roads were full of snow and her office was eight miles away and i don't drive, so i just went into withdrawal. As you know it was misery. Plus i kept getting texts from my parents while i was incredibly ill on the couch with the headaches and nausea about making sure my food support and government health insurance forms were filled out. I ended up laying on my couch feeling like death for a month. It was about all i could do to walk between my couch and the kitchen for that month and then ended up biking to an ER and getting a prescription for restoril, and later switched to zolpidem and now have been taking Amitriptyline for the past 6 or 7 months. I'm functioning, but not doing a whole lot most days. I can definitely relate to the armpit thing, I couldn’t think of any other explanation to that either. How come you went on Amitriptyline? Was that an aid for sleep too? Are you thinking about Weening off it at all, I’m just about functioning right now and I’m off completely. 2011 - 1-3mg Flupentixol - Dec 2018 CT 2017 - 15mg Citalopram - lasted 17 days then CT 2018 - 15mg Mirtazapine - 6 months then CT 2019 - 20mg Duloxetine - lasted 5 days then CT 2019 - 7.5-30mg Mirtazapine - April to August, 30mg-0mg within two month period 2019 lansoprazole 30mg may-July 2019 omeprazole 20mg aug-sept Link to comment
JoJo90 Posted October 31, 2019 Author Share Posted October 31, 2019 35 minutes ago, Phoenix1111 said: Hi @JoJo90, I'd just like to preface this and say that obviously i am not a medical doctor and you should seek the advice of a professional. The following is simply my story and my personal experience and opinion. When i presented with severe panic/anxiety i was 16/17 years old at the time (i am 36 yo now) so it was around year 2000 and back then i don't think many doctors knew anything about the Mthfr mutations, so their answer was to drug me on antidepressants. I think maybe they dulled some of my nerves a bit but really didn't have much of a positive effect at all for me, i was still struggling to function in everyday life. Then in 2013/2014 i found a Doctor near me (I'm in Sydney Aus) and he suggested testing for Mthfr mutation and i thought i might as well since nothing else was helping, and the results confirmed that i was Homozygous MTHFR in a1298c gene which is rarer than the Mthfr heterozygous a1298c that many people have, as you probably know. He started me on activated forms of vitamins that the mutation was inhibiting my body from being able to process properly and over a period of months (can't remember exactly how long) i started to feel much less anxious and my low mood lifted and i almost felt alive again (i know that probably sounds weird). Although it can take a little time (depending on how severe the deficiencies are). Unfortunately i am going to have to start from scratch with antidepressant weaning, i am in the process of stopping one i was put on 2 months ago (which didn't help much) and once i am stable for a while i will try to wean off of the Mirtazapine AGAIN. In July I was down to 0.5mgs but i believe that i had reduced the lower doses way too quickly and when my mum had to have a serious operation i had a massive meltdown which resulted in reinstating the full 15mgs, had i known better at the time i would have only gone back up a couple of mgs and held. I didn't have enough knowledge at the time to slow the taper down unfortunately , but luckily i found this site which has helped me and i have had a lot of aha moments since finding it Did your doctor start you on any supplements after informing you about the Mthfr mutation? Hey Phoenix I was prescribed at a fairly young age also you just trust the medical professionals (GP) to fix you. Many years later you find out the truth behind all these drugs and I don’t know about you but I’ve lost my trust in GP’s almost completely they have let me down many times over the years. In a way though it’s not entirely their fault because their training doesn’t allow for it. However I have a spinal condition and various doctors dismissed it from a very young age went I went to them for help. (Which could of more than likely been prevented) I try to heal myself nowadays with a lot of things, do my own research. This is how I found this site. I’m hoping I can feel even just that tiny bit better with withdrawal or not, I’m a Fierce advocate for my own health. I have to be. I agree don’t rush anything with trying to come off. I had to come of faster than I’d like because of the adverse effects it was having on me. I have definitely had a lot of aha moments! I’ve so many screenshots on my phone of positive stories and information - mainly from this site. I actually found a lady from a Mirtazapine withdrawal group on Facebook and messages her. She told me she had a generic test done from 23andMe found out a lot of information from her. Long story short - she had MTHFR ++ for help from a naturopathic dr and found out she was deficient in a number of things, began supplements with the ones that were best suited to her and were feeling better after a few months but is continually improving. So that’s why I took the test and found out a lot. 2011 - 1-3mg Flupentixol - Dec 2018 CT 2017 - 15mg Citalopram - lasted 17 days then CT 2018 - 15mg Mirtazapine - 6 months then CT 2019 - 20mg Duloxetine - lasted 5 days then CT 2019 - 7.5-30mg Mirtazapine - April to August, 30mg-0mg within two month period 2019 lansoprazole 30mg may-July 2019 omeprazole 20mg aug-sept Link to comment
Phoenix1111 Posted October 31, 2019 Share Posted October 31, 2019 Hey @JoJo90, I'm so sorry for what you've had to go through and i completely understand the frustrations with doctors not really listening to the patient, which i've experienced quite a bit of. Did you actually get started on vitamins and supplements after finding out about the mthfr mutation? 2000 - Aropax, Zoloft and other various ssri's 2008?? - Lovan 40mg 2016 Nov - Mirtazapine 15mg after failed Lovan fast taper (didn’t know better) 2017 Dec - Started slow taper - 2019 July 0.5mg (crashed) 2019 July - Mirtazapine 15mg reinstated 2019 Aug - Started Vortioxetine 20mg and stopped Lovan 40mg 2019 Nov 3rd - Stopped Vortioxetine and went back up to 40mg Lovan and holding 2020 Sep - Windows and waves.... still holding on 15mg Mirtazapine and 40mg Lovan Link to comment
JoJo90 Posted October 31, 2019 Author Share Posted October 31, 2019 9 hours ago, Phoenix1111 said: Hey @JoJo90, I'm so sorry for what you've had to go through and i completely understand the frustrations with doctors not really listening to the patient, which i've experienced quite a bit of. Did you actually get started on vitamins and supplements after finding out about the mthfr mutation? Hey No I’ve only recently just found out about it, I’m in the process of it though I have a very knowledgable chiropractor in that field. 2011 - 1-3mg Flupentixol - Dec 2018 CT 2017 - 15mg Citalopram - lasted 17 days then CT 2018 - 15mg Mirtazapine - 6 months then CT 2019 - 20mg Duloxetine - lasted 5 days then CT 2019 - 7.5-30mg Mirtazapine - April to August, 30mg-0mg within two month period 2019 lansoprazole 30mg may-July 2019 omeprazole 20mg aug-sept Link to comment
Mimi79 Posted April 6, 2021 Share Posted April 6, 2021 Hi @JoJo90 Thank you for your message on my thread. I really appreciate it! You said that Mirtazapine was the cause of your suffering? How are you now? Are you feeling better? Did your depression lifted after you stopped mirtazapine? Thank you so much! 2008-Today: various ADs, benzos and seroquel , initially for Anxiety Related Insomnia. (Absolutely no other mental issues than simple Insomnia!). Numerous W/D and C/T of those meds. During those years, my GP diagnosed me with GAD, Depression, etc... It was all W/D related, I know now! Fall of 2019, after too fast attempt to taper Mirtazapine, put myself in full blown W/D. February 2020, found SA and staying on 45mg Mirtazapine, waiting for stabilization. February 2021, I stupidly used some Ativan prn to cope with Mirtazapine W/D symptoms (By far worst mistake of all my life!!). Became accidentally and rapidly addicted (within 2-3 weeks). Started taper immediately. Actual medication: Mirtazapine: 40,0mg - holding- Ativan Taper: Started at 0,29mg march 2021, 03-28 0.28mg/ 04-08 0.27mg/ 04-26 0.25mg/ (...) 10-29 0.18mg/ 04-05-22 0.17mg/ 08-25-22 0.16mg/ 09-15-22 0.15mg/ 10-22-22 0.14mg/…/ 01-12-2023 0.11mg /07-02-2024 switch to 1mg Valium / 14-02-2024 0,9mg Valium. Supplements: Omega-3, Probiotic. Link to comment
JoJo90 Posted April 7, 2021 Author Share Posted April 7, 2021 (edited) Hi @Mimi79 Yes as soon as I started it, I developed GI symptoms the 4th day I was on it and as time passed the depression got much worse, paranoia and a lot of their things I didn’t have previously become apparent and it appears I was in a protracted withdrawal before I even started the drug which I now realise. (From an older drug called Flupentixol) Which I stopped CT (Doctors advice) after 10 years. It’s sometimes hard to differentiate between “who is the real you” and the effects from the drug. To be honest I did it all the wrong way, my nervous system didn’t know what had hit it. So after coming off the Mirtazapine the paranoia lifted and the depression, (manic, suicidal) that I experienced got a little easier - BUT it was still pretty bad for a few months, except I was able to see it more clearly that it was the drug causing it all. Then I came across this site which I am so thankful for. Okay 18 months later is where I am now. Of course it’s all windows and waves, even now. Guess what though when I look back I am so much better than I was mentally. I have a lot of symptoms that still come and go but I am coping and my life is much easier, keep in mind that I didn’t know I had to taper so slowly hence why I have been “eaten” alive I would call it. It was an horrendous time and I shall be sharing my story one day soon. Although I felt I had to get off it ASAP because of all the effects from it. So to summarise for you, what you are experiencing now is because of the drug and it is not you! Unfortunately the human brain works in the present moment, so try and find a reasoning in a tiny corner of your brain and keep it there. I know when I was going through the worst time that I constantly needed reassurance, and I would get that reassurance just to slightly ease my suffering for a while but then I would need it again and again. You know what though it passed the time for me, and ultimately it helped. You're doing an amazing job and us humans are so incredibly resilient, we can take a lot of suffering and still bounce back. You can’t see it yet, and that’s okay but you will improve. Try to find comfort in hell for a while longer and take heart that at the end of it your chains will break free. Much love ❤️ JoJo Edited April 7, 2021 by ChessieCat unbolded 2 2011 - 1-3mg Flupentixol - Dec 2018 CT 2017 - 15mg Citalopram - lasted 17 days then CT 2018 - 15mg Mirtazapine - 6 months then CT 2019 - 20mg Duloxetine - lasted 5 days then CT 2019 - 7.5-30mg Mirtazapine - April to August, 30mg-0mg within two month period 2019 lansoprazole 30mg may-July 2019 omeprazole 20mg aug-sept Link to comment
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