Raindays: second attempt

[Raindays]

Hello, Happy New Beginnings! This is my second attempt at getting off Effexor XR. My battle started about 2 and half years ago. After being on 150ml for 15 or so years I new I had enough. Boy, oh boy was I in for some trauma! I was given so much misinformation by Doctors as well as pharmacists. Things like tapering way too fast , taking it every second day, and then jumping off at 6mls because " you are at such a small dose now you should be fine" . Anyway I was off it totally for 8.5months but I was feeling so poorly. In despair I told my Pharmacy how bad I was fairing and they said "well maybe you are just the type who needs to stay on them for the rest off your life". And my favorite "just like a diabetic needs to take insulin every day blah blah blah blah blah " Anyway feeling defeated and out of hope I went back on and up to 75ml for a year..... SECOND TRY. I have been tapering now since June 1, 2018. I have experienced a lot of intense feelings and sensations. Maybe I have tapered too quickly again I don't know ? I have been at 6mls for 2 months.It has been rough. This is where I messed up last time so I must be cognisant ....help😩

[Gridley]

Welcome to SA, Raindays.  I';m sorry you've been so poorly advised by medical professionals.

 

To give members the best information, we ask them to summarize their medication history in a signature -- drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly.  Please be sure to include the date you started your taper, the dosage you started your taper at, and the rate at which you have been tapering the Effexor XR.

 

Account Settings – Create or Edit a signature.

 

At SA, we recommend tapering at no more an 10% of your current dose every four weeks.  Some members have to taper more slowly.

 

Why taper by 10% of my dosage?

 

Tips for tapering off Effexor (venlafaxine)

 

These links explain why it is important to taper slowly.

 

Brain Remodelling 

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

If you are having very bad withdrawal symptoms, you may well be tapering too fast.  Here is some information on withdrawal.

 

What is withdrawal syndrome.

 

Glenmullen’s withdrawal symptom list.

 

 The Windows and Waves Pattern of Stabilization

 

When we take medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  

 

Youtube video, 4 minutes: Healing from antidepressants

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Please research all supplements first and only add in one at a time and at a low dose in case you do experience problems.

 

Once you've completed your signature with the information requested, we'll be in a better position to help you.

 

 

 

 

[Altostrata]

Hello, Rainydays, how are you doing?

[Raindays]

Hello I am now in month 11 of my taper from Effexorxr 75ml. starting dose. I am on .006grams now. It's really been up, down, sideways and round and round. Don't know what else to do but keep going with it. I feel scared and filled with despair a lot . Not many windows and I try not to put a time limit on seeing an improvement. I know Katamari did it,  but I feel like maybe I was on it for too long and now my brain is irreparably damaged. Thanks for checking up on me I really appreciate it. 

[Raindays]

Hello, just wanted to share with you that I am now closing in on 6 months off Effexorxr. The first few months where less intense than the following months. I seem to be slow to react I guess. I have to be patient and determined because this is a brutal process. Symptoms morph from one thing to the next. Lots of fear and uncertainty as well as doctors telling me that withdrawal doesn't last more than a few weeks. I have found that I have had to do my own digging to unearth information and stories of other's in withdrawal, to find validation of what I am experiencing is "real" and that others are having shared symptoms. This withdrawal process is a lonely journey, with so much misinformation and fear mongering. I am thankful for this site and for the wisdom of it's moderators. 

Edited November 21, 2019 by Raindays
grammer

[sunnysideup69]

2 hours ago, Raindays said:

 doctors telling me that withdrawal doesn't last more than a few weeks. 

Oh yes. if only I had a £ for every time I've heard that...........Hello  Hope you find this site as useful as I have....it's a godsend. 

[Shep]

@Raindays Please note I've merged your new thread in with your previous intro thread. Please keep posting your updates here in your intro thread so all of your information is in one place. 

[Rhiannon]

On 11/21/2019 at 6:45 AM, Raindays said:

Hello, just wanted to share with you that I am now closing in on 6 months off Effexorxr. The first few months where less intense than the following months. 

 

It's not you, this is really common and there are only like two doctors who seem to be aware of it. AD withdrawal seems to have a delayed effect that really kicks in a few months out. We get so many people here who got through the acute phase okay only to really get hit a few months out.

 

Of course most people get told "it's your underlying disease" and get put back on meds at that point. And we end up on them for our lives. But it's not "underlying disease" it's withdrawal.

 

It happens to people who were put on ADs for off label reasons and don't even have an "underlying disease." I was never clinically depressed before withdrawal and never suicidal until I took ADs.

[Raindays]

Thanks for listening to me. Just wanted to say that I have felt so understood here. Thanks for letting me know about the delayed reaction and that it is common. That is reassuring. I think back to when I tried to get off antidepressants before and I felt the similar feelings of dread and hopelessness. That led me to throw in the towel and believe the doctor who told me you have something wrong in your brain and you must go back on the drug to have any quality of life. I cry about that sometimes because I was off for 9 months and I tried so hard! All that wasted time I can't get back and oh how my loving family stood by me. We all walked through hell together during those 9 months. But I, in a time of weakness and feeling so vulnerable and tired,  believed the doctor and so went back on Effexorxr. Anyway if this delayed withdrawal reaction is common I am hopeful I can keep trying. Thank you, sending much encouragement to all today.

[Raindays]

Hello all, wow this is hard. I am travelling with my adult children in beautiful British Columbia for three days. I guess I was feeling hopeful and  calm when I booked this holiday two months ago! I guess I was deluded. I am really struggling so far from home and my safety zone. Nausea, panic, DP., just feeling horrible and ashamed of myself for acting like this. I want to share normal life events with my kids. I don't want to be so needy and afraid. I want to be a positive role model for them by instilling joy and the sense of adventure in them. I feel like I have let them down and this is devastating me. Why am I not healing faster? Will I ever get sorted out in my head? What if this is who I am now? What if this is as good as it gets? Maybe I have too much damage and the receptors won't return to normal?  Can anyone relate?

[Shep]

19 hours ago, Raindays said:

Why am I not healing faster?

 

It's frustrating that it takes so long. It may help to read this thread and know that it's normal for it to take a long time: 

 

Are We There Yet? How Long is Withdrawal Going to Take?

 

19 hours ago, Raindays said:

Will I ever get sorted out in my head? What if this is who I am now? What if this is as good as it gets? Maybe I have too much damage and the receptors won't return to normal?  Can anyone relate?

 

Some other helpful threads:

 

Acceptance

 

Waiting for The "Real Me"

 

Which "me" is the real me?

[Raindays]

Thanks Shep for steering me to these posts. They are really helpful. One can feel so alone at times like this. Today is feeling like a much better day. My life on the drugs wasn't absolutely terrible, but after being on them for so long I began to see that I didn't want to keep putting chemicals into my system and causing damage. I have to remind myself of the "whys" for stopping antidepressants and keep that as my beacon. Hopefully the me without drugs will turn out to be someone we can ALL live with. Time will tell.

[Raindays]

Hello everyone. New year new me? I hope. Wow this is hard. I feel like a child again, afraid, crying in the dark. 7.5 months into withdrawal from Effexorxr, Paxil and occasional Ativan use for over twenty years. I have lived with a breast cancer diagnosis and subsequent double mastectomy, and oophorectomy. This seems so much more cruel and unnecessary. Why? Why? All I had was a common panic attack and boom I was suddenly given a diagnosis that I was flawed and weak and I will need pills to function in society and to look after my kids. What is really upsetting is that I never used drugs nor was a drinker. I lived a good clean life. What I think I really needed was practical help and a shoulder to lean on.

 I AM SO ANGRY at myself for believing the "professionals". I feel like I am an addict. I can't live without those pills . The suffering is unending, day after day. I have no patience. My symptoms are absolutely terrifying me. So shaky, my head trembles. My legs feel weak, zero excercise tolerance, intrusive thoughts, terror. I am wasting my life. The fight to get off these drugs has consumed so many precious YEARS but what else can I do ? 

[Raindays]

Hello all, can anyone advise me ? I read somewhere that Effexor XR 150 mg and under works as a SSRI and dosage higher than this works as a SNRI. Is this correct? Can anyone verify this for me? 

Thanks 

[Shep]

Rainday, this is a link that moderator Brassmonkey has shared about this issue: 

 

What you need to know about venlafaxine (Effexor)

 

You're correct that there is a shift from SSRI (serotonin) to SNRI (noradrenaline). Per the article: 

 

Quote

At low doses, venlafaxine prevents serotonin reuptake. This means that it leaves more serotonin in the system. At higher doses, it inhibits both serotonin and noradrenaline reuptake.

 

However, what really matters are your symptoms. Let your symptoms be your teachers and guides and they will tell you the right rate of tapering and when you need to hold. 

 

How are you feeling? How is your sleep?

[Raindays]

Shep and Brassmonkey, Thank you for looking for this information and passing it along to me. In response to your question on mood and sleep, I think I should be feeling better at point in time. I have been off all meds for the last 8 months. My sleep is still messed up. I think I might get 4 hours. I am angry and shaking and I hate it. I feel like I will be like this forever. I wake in the morning with fear and dread for the future . I don't know what to do some times. Thanks for the success stories they offer glimpses of what might be. This is one of the cruelest things I think a person can experience. The guy that invented these drugs knew what he was doing by concocting a drug that people would become so chemically dependent on, that they would never be able to stay off them. Maybe having taken them for 20+ years has worn a groove so deep that I may never get out the rut!

Thanks for listening. 

[Shep]

14 hours ago, Raindays said:

I wake in the morning with fear and dread for the future .

 

This is very common and is related to cortisol. Please see:

 

Waking with panic or anxiety - managing the morning cortisol spike

 

14 hours ago, Raindays said:

My sleep is still messed up. I think I might get 4 hours.

 

You may find some of these tips helpful:

 

Tips to help sleep: so many of us have that awful withdrawal insomnia

[Raindays]

1 year anniversary this week

 

Hello all . Just wanted to pop in to say I have made it to 1 year off both Effexorxr and Ativan. I was hoping I would be one of the lucky ones who sailed through withdrawal with very few struggles. THIS HAS BEEN A VERY HARD, SOLO JOURNEY! I don't feel like I have made much progress and I wonder if I will get my mind and my physical fitness back. Thanks for the success stories, they keep me breathing and putting one foot in front of the other. 

 

Edited June 2, 2020 by ChessieCat
added topic title

[Gridley]

3 hours ago, Raindays said:

1 year off both Effexorxr and Ativan.

Congratulations, Raindays.  Yes, you will get your mind and physical fitness back.  It just takes time but it will happen.  It's a long, slow frustrating recovery but you will make it.

[Raindays]

Thanks Grindly for your response.  It feels like I have brain damage. My memory is terrible.

  It is a struggle to accomplish most tasks without fatigue and anxiety. What if this is as good as I get?

[Raindays]

Hi.  I've been asked to give an update. Not great. Still didn't reinstate anything. 14 months off now. Days crawl by. No interest in being around any one but family. I feel broken -- defeated. Doctor's keep saying my symptoms are NOT caused by drugs or withdrawal. Maybe they are right. I feel really scared. I want to be healed. Lots of random pain in my joints and muscles. Dizziness has been a constant the last two weeks-- like I am trying to stand on a boat. Head shaking/twitching  HASN'T gone away, so that must be permanent now. Terror and great suffering in the morning upon waking til I can talk myself out of it. I think the depression I am experiencing is directly related to my bodily symptoms which are out of my control and however much I try to control them I just can't. My body is doing its own thing. How to put into words what my withdrawal has been like? ---- a great big walk through what hell must be like. I feel like I am being assaulted every #€*@%$! day. I am alone and I have to be brave.There is no one to hold my hand and I must stare the devil down and keep walking! That's what I can do everyday. Walk and walk and walk.

 What else? Well a former sufferer on this site named Judith has recovered from Effexor, one of the drugs i was prescribed for twenty odd years. She very graciously responds to my desperate questions with detailed, patient, thoughtful reassurances.  To her I give my biggest THANK YOU, and a big bouquet of the most expensive roses in all the land. Not many folks give a damn. She is truly the most selfless person I have come in contact with . She deserves a medal .

What will become of me ? Will I get through this with any quality of life left? What have I done to my brain, what have I done?

[Raindays]

Struggling with hopelessness and fear

 

Hello. I am 14 months into withdrawal from Effexorxr and as needed Ativan. I am not feeling healed in any sense. Lots of symptoms still with new ones thrown in for scary measure. Dizzy, D.R. and shaky. It's hard to be brave when your body is throwing codes all the time. An addiction specialist I spoke to said my withdrawal will likely take more than two years because I was on these drugs for close to 25 years. Wow. Like I have two more years to waste trying to recover from this. I am so angry. Why are there not more class action lawsuits against the drug companies? We were lied to. I was lied to. The  reason I stayed on the drugs so long was because I was told I had a chemical imbalance in my brain, and that I NEEDED to stay on them forever to function normally. Now we find out that there really is no proof of this theory what so ever. Scientists have tried to find this chemical imbalance  BUT THEY CANT! Now the drug companies are back tracking and say "they didn't mean that literally". Well that is unacceptable to me.

 

Edited August 19, 2020 by ChessieCat
added topic title

[ChessieCat]

4 minutes ago, Raindays said:

as needed Ativan

 

Q:  How often are you taking Ativan?

 

If you are taking this intermittently it may be making things worse.

 

 

I suggest you check out the sub topics in this topic (which was recently updated):

 

are-we-there-yet-how-long-is-withdrawal-going-to-take

 

You might find this helpful:

 

dealing-with-the-lost-years-and-moving-forward

 

There are many other members who feel like you do.  I suggest that you check out the topics in this area of the site: 

 

finding-meaning

[Raindays]

Hi ChessieCat, no I am not taking Ativan now. I have been off for 14 months. I took them "as needed" basis for over 20 years. thanks for the material to read on "lost years".

[Raindays]

Hello to all. I'm am at 19 months off now.  Just an update. Shaking still hasn't gone away😩. Went to doc. Again about it. I told her I think I have suffered a brain injury from being on the drugs for so long and them coming off. She said no these drugs don't cause brain damage. I sure feel like they do. I didnt have these shakes when i was on them. Anyway she is sending me to neurologist . I am scared. Trying again to be brave. This is so isolating as it feels like no one wants to here my story about how I am experiencing withdrawal. It is like the doctors can't tolerate any negativity about these drugs and just want me to "shut up already " and go away. Oh did I say that she recommended I go back on a medication for my anxiety.  She said Effexorxr wouldn't have been the drug she would have chosen for my condition .She said just give her a call and she can send a script to my Pharmacy.  I don't believe any of what they say anymore. Can these drugs affect your thyroid? Since I came off the drugs my thyroid has tested lower than normal . Does anyone have any experience with this? 

Thank you for your feedback and for reading my update. Good luck all.

 

[Raindays]

Hello. Well 20 months in withdrawal now. I don't think I am healing much or if I am it is in microscopic amounts. I am sick of feeling so bad in the mornings. It's so dreadful. It feels like death. Like there is no hope -- no end in sight. The only thing I can do to stop the terror is to turn on the light and get up. I don't understand, my brain is not working right. I am afraid that I won't heal from all the years on the antidepressants and benzo. It wasn't supposed to be like this. I was supposed to be able to get off the drugs and my life would be good. BUT IT IS NOT! I am so angry. Things are not ok! 20 months! We're has my life gone? I am not me anymore. 

[Raindays]

Topic title:  My 21 month update

 

I don't know if anyone reads my updates, if they get lost, or if I am putting them in the wrong place, but I don't get any responses 🤔. I can't seem to understand much of how to navigate this site as my brain is fairly disfunctional. I am in my 21 month of withdrawal now. I haven't gone back on antidepressants or Ativan but there have been many many dark days when I wished I could take a benzo and get some short lived peace. What a lonely, terrible undertaking this is. I am usually sad, anxious and exhausted and foggy. I am angry that the only support I get from professionals is to tell me just go back on the drugs "you need them". Do I ? I don't know anymore.

 

 I thought I would be a lot better at this stage. So much time wasted, so much needless suffering. But, who cares? What a mess. What am I to do? I think there is no coming back from this. Why did I put faith in a corrupt system? I am totally to blame. I was so gullible. I listened to a Dr's. diagnosis and believed I was damaged back then and that my brain was unbalanced. Really? It sure is now. It was just a simple anxiety attack! Thats how this nightmare began. Thats it! A stupid, scary, run of the mill,  anxiety attack unleased this Pandora's box of horror.

 

 How to get through each day? Minute by bloody minute. I am not me anymore. Is there hope? Do I dare to hope anymore? 

 

Edited April 8, 2021 by ChessieCat
added topic title before merging 2 Intro topics

[ChessieCat]

I've merged the new Introduction topic with your original Introduction topic.  Each member has only 1 Introduction topic which is the best place to ask questions about your own situation and journal your progress.  This keeps your history in one place and means you do not have to repeat your story.

 

Q:  What was the date and dose that you took before stopping Effexor?

 

Please add this information to your drug signature.  Account Settings – Create or Edit a signature

 

SA staff try to respond to members' specific questions.  Your last 3 posts are more journalling, not requiring information from staff.

 

The SA staff (all unpaid, unrostered volunteers) is very small and are peers (tapering/recovering themselves) and assist members as they are able.  Staff time is mainly spent assisting members who need assistance with drug questions and information and because of this members are encouraged to try to connect with other members so that you can support and encourage each other. 

 

This topic has some helpful information:

 

are-we-there-yet-how-long-is-withdrawal-going-to-take

 

I suggest that you check out the other areas of the site.  Posts made in these topics should be general only; questions etc specific to your own situation should be posted here in your Introduction topic:

 

symptoms-and-self-care

 

finding-meaning

 

relationships-and-social-life

[Kimboslice]

Hey @Raindays, 

 

I feel your pain.. and understand how the circumstance (Withdrawal if it should even be called that) came to be can invoke so much anger and feelings of self pity. I feel like my brain has been removed and replaced with a baked potato 🥔 😂. I noticed no one had contributed to any of your blogs so just thought I’d make contact and let you know someone understands. 

[Raindays]

Thanks for reaching out to me. Its hard to know if anyone reads what I say here.

This is such a devastating, lonely experience for me (I am sure for everyone else here too). Thanks for being so kind as to acknowledge me. You've just made my evening brighter ❤ . 

Has your situation improved or are you still in the thick of it?

Thanks so much for understanding and making contact. 

[Kimboslice]

It’s a very lonely experience. I think because the timescale and outcome varies so much from person to person it becomes almost impossible to gauge how your own healing is coming along.. The fact that progress isn’t natural or always obvious means it isn’t relatable to other areas of life or to other people. It’s a journey into the unknown and that would be scary for any human being. But we’ll get there. 
 

Am I improving? At times I would say definitely and others I question if life could ever be bright again but that’s probably just a by product of the process being completely non linear. I’ve had moments that indicate good amounts of healing. My sleep is deeper, I’m not urinating all the time, I have more stamina, where as a year ago doing something as trivial as making breakfast would send me back to bed.. and at times my ability to be creative and engage in conversation has improved.. but still very hot or miss. 
 

How about yourself? .. have you seen any improvement.. even if minimal? 
 

 

[Raindays]

Nice to hear back from you. I know what you mean about this process being nonlinear. It feels as though I have made no progress at all and as if nothing will improve. Then other people will say I am doing "better" than last year. I definitely don't think I improved as much or as well as others on this site. But I don't know. Fatigue remains a huge problem for me as well. In fact it can be down right scary how exhausted I feel at times. I usually start to feel better by days end though.

Nausea has gone as have bowel issues and weepiness.  Brain jolts, headaches and dizziness are mostly gone. I still have jerks, shakes and tremors. My writing skills are not sharp, nor is my thinking. It is very clouded. Isolation is a problem, but it got to the point where it was getting embarrassing trying to make excuses for not showing up to events and trying to explain what I was going through.

I have lost friends. This withdrawal issue can turn quite heated. One ex friend had both her children on antidepressants at a young age to help her cope with the youngsters' normal childhood stuff. She will not believe these drugs are harmful. But that would justify her medicating her kids I guess. I stopped trying to "defend" my withdrawal experience. I did that a lot at the start. It was like I felt the need to justify going off medication. I fought hard. I was angry. Folks said "just stay on it, you need it." I knew I didn't by then. It was causing a lot of physical issues in me. People will believe what they want and each person's experience is of course unique. 

It will be 2 years for me in June. I regret falling for the chemical imbalance theory that kept me reliant on antidepressants. I am definitely mourning my lost self. So much time lost to tapering, withdrawal and recovery. I hope you are noticing some good healing. The way you write indicates to me that your cognitive abilities are sharp. You are very succinct and your thinking seems clear. 

Thank you for taking the time to correspond.

Take care. 

[wantrelief]

Hi Raindays - I just read your thread and am so sorry you are still suffering.  I am heartened, however, that you have had some improvements.  This journey is beyond challenging and you are very brave.  You really never know when things could turn around and I believe they will....just keep hanging on as you are so courageously.  

[Kimboslice]

Hey hey we’re like London buses.. you’ll have a thread full of replies soon enough 😉. 

 

It seems you have at least seen a little improvement? Even if Your not in the place you expected after two years. The fact that certain symptoms have lessened or disappeared should indicate the same is possible for the rest in theory.  

It’s very kind of you to compliment my writing skills. Written and spoken language have become a real challenge for me so to have a little positive feedback is  A little confidence booster. 

 

The issues you’ve listed above are uncannily similar to what I’ve suffered which is comforting to a degree. It’s a reminder that this decline is normal (after discontinuing SSRIS) to some extent and I’m not just going completely nuts.

 

You mentioned isolation. It’s the part of this I struggle to deal with the most. I’ve always been an extremely out extroverted out going person, always looking for something exciting and fulfilling to do, interacting with people all day every day.  Now each day I find myself entrapped within the four walls of my dingy, cold house.. and every time I try and push myself it unfortunately is too overwhelming. And I have also pushed many friends away. The truth is though.. in situations such as this, our true friends will still be around when we come out of the other side.. and even if we don’t. There’s a beauty in that somewhere I suppose. How to come to terms with such drastic changes of lifestyle hey? Sigh ☺️

Wantrelied has so rightly written above “you never know when things could turn around” and that has been the case for so many before you and I so there is no reason why it can’t ring true for both of us too.

 

[gentlehermione]

Hi @Raindays

 

We've been down somewhat similar paths. I fell for the chemical imbalance myth, too and was on Effexor for a good twenty years. If only I had known then what I know now!

At 41 months out I am definitely better but am not yet completely healed. "The road is long with many a winding turn..."

SA has been a godsend to me throughout this hellish ordeal. It's a fantastic source for advice and support. 

Wishing you well and sending you healing vibes 🥰

 

[Raindays]

Wow so nice to her from you!  Not many people have been on antidepressants for decades like us. Yes I am grieving my lost years to this drug as well as Paxil and benzos. So angry for not questioning the doctors. I hope you are noticing some good healing now. It is hard for me to be patient in the midst of suffering-needless suffering. 

Thanks for encouraging me. It means a lot.