Hello,

 

I’m coming from Surviving Antidepressants.

 

Briefly about my story: I have been in a severe withdrawal from venlafaxine for nine months. One month after my crash, I tried to reinstate, but so far there has been no effect. I am currently at 14 beads and nothing has changed. I am still bedridden, usually unable to speak, experiencing mental akathisia, brain fog, and DP/DR and i only sleep three hours.

 

I don’t know what to do. I know I asked the same question months ago. I prayed and hoped so much that if I kept increasing the dose, something good would finally happen — but that is not the case at all.

 

Could you please tell me what you would advise? I keep adding more beads and nothing changes, absolutely nothing about my terrible condition. I have no hope left. I know I have been repeatedly advised to keep increasing the dose, but how long am I supposed to keep doing this without anything happening?

 

Dear @FindRest, dear @LostinCanada2, dear @Catina, dear @Alfred1977 and maybe other people I would be so grateful if you could respond to me again. I truly don’t know how much longer I can endure this. It is so, so hard.

kind regards

 

My SA Thread:

Hi @CharlotteGermany

 

Welcome to the forum!

 

Im so sorry for all the trouble you have been having with Effexor.

 

I found you on SA and linked to your thread for you.

 

Ive made you a new signature which best represents, from I can read, your drug history. Could you check and make any alterations. Are you able to include more entries for each dose change?

 

3 hours ago, CharlotteGermany said:

I don’t know what to do. I know I asked the same question months ago. I prayed and hoped so much that if I kept increasing the dose, something good would finally happen — but that is not the case at all.

 

So far has Reinstating helped at all, have you seen any signs? Has it made you worse in anyway, at any point?

 

We are all here for you, you are so very welcome and Im glad you found us. You have some old friends here too which is great.

 

Hang in there, nothing lasts forever, this too will pass!

 

Chippy

 

 

 

Thank you so much, that’s so kind from you. Thanks for that. 

Dear Chippy, I can’t tell you. I don’t know how I would be feeling right now without the reinstatement. I keep increasing the dose in the hope that something positive will happen, but nothing is happening. I don’t know if my condition worsened because of the reinstatement or if it happened independently of it. I started back with one bead three weeks after the crash, so I can’t really say.

In any case, it hasn't improved anything. Nothing at all. I can’t speak, I can’t think, I can’t go outside. It’s been like this for months. I have no strength left. The mental akathisia is so, so strong. I desperately need even a tiny bit of relief, which is why I clung to this last straw, thinking that increasing the dose might do something good after all. But nothing.

Yesterday, I started a tiny amount of Lamotrigine in the hope that it might stabilize me a bit, but I am terrified that the things I’m trying will make me feel even worse. I don’t know what to do; I only know that I truly can’t bear it anymore. I need some relief. 

Hey @CharlotteGermany

 

Im so sorry for all your suffering. 😞

 

For me I would have expected to see some progress by now if reinstating was going to work for you. 
 

I think at this point it may be best to hold your dose where you are, and wait for some stability without anymore changes. 
 

I wouldn’t add any more drugs to the mix. I know you are desperate for some relief but in my opinion this will only add to your suffering. 
 

I’m not familiar with Effexor as some on here so I’m sure they will chip in soon. @LostinCanada

 

I’m a great believer in time and the bodies ability to put things right. Our job is to buy it that time with distraction, acceptance and a commitment to keep taking one day at a time. 
 

We are all here for you. 
 

Chippy

47 minutes ago, CharlotteGermany said:

 

Dear Chippy, I can’t tell you. I don’t know how I would be feeling right now without the reinstatement. I keep increasing the dose in the hope that something positive will happen, but nothing is happening. I don’t know if my condition worsened because of the reinstatement or if it happened independently of it. I started back with one bead three weeks after the crash, so I can’t really say.

In any case, it hasn't improved anything. Nothing at all. I can’t speak, I can’t think, I can’t go outside. It’s been like this for months. I have no strength left. The mental akathisia is so, so strong. I desperately need even a tiny bit of relief, which is why I clung to this last straw, thinking that increasing the dose might do something good after all. But nothing.

Yesterday, I started a tiny amount of Lamotrigine in the hope that it might stabilize me a bit, but I am terrified that the things I’m trying will make me feel even worse. I don’t know what to do; I only know that I truly can’t bear it anymore. I need some relief. 

@CharlotteGermany my heart goes out to you, I'm truly sorry!

Give it a little more time, it could change for the better in an instant.

Praying that relief comes to you soon 🙏

My heart goes out to you. Please know that we can see your suffering and know it is real. Your helplessness is completely understandable. 

 

Have you go someone with you to care for you? 

@CharlotteGermany

I just wanted to give you a little encouragement…

You mentioned not being able to talk sometimes. I just wanted to reinforce that even if you might have trouble with speaking at times, you’re communicating really well here on the forum. ❤️✨❤️

@CharlotteGermany are you keeping a daily log, rating symptoms...has anything gotten a little better, has anything gotten worse? 

I know I asked you before on SA....what manufacturer are you using? Are your beads different sizes or the same size? This is important.

It has only been recently you added 4 beads, I would give that a bit of time to kick in.

When you say a small amount of lamotrigine, what dose would that be? 

@FindRest @Alfred1977 any thoughts?

Thank you so much for your messages. Yes, my family and my boyfriend are taking care of me, but I am terrified that they won't be able to hold on much longer.

 

Dear @Lostin KanadaNothing has changed. Really, nothing at all. It’s the same every single day. I just lie on the sofa and try to breathe. That’s it. The mental akathisia is so intense that it feels like it’s tearing me apart. The Venlafaxine simply isn't working anymore. So far, increasing the dose hasn't helped at all. I am so scared. I’m also very afraid that it’s constantly 'setting me on fire' and that I might be doing much worse because of the beads than I would be without them. Instead of taking less, I take more because I hope so desperately that something good will finally happen.

The manufacturer is Aurobindo (Puren). The beads are almost all the same size; there are very few small or large ones, most are medium-sized. Please, I urgently need help against this akathisia. It is so, so bad. I don't know how I can make it. It’s been several weeks now since I increased the dose (starting from 8 beads), but nothing is changing. I would be so grateful for any idea. I need help so desperately.

16 minutes ago, CharlotteGermany said:

there are very few small or large ones, most are medium-sized

I know this affects how the drug is released....the bigger ones release more slowly, the little one faster.

It is important to count how many of each size is in a capsule... depending on that ratio, specific sizes need to be taken so that there isn't interdose withdrawal. This is my understanding....maybe @FindRest will know more.

I am so sorry there has been no change....maybe sorting this bead size out will help. ❤️🙏

11 hours ago, CharlotteGermany said:

So far, increasing the dose hasn't helped at all.

Sorry to hear you are still suffering. I remember back on SA, increasing the dose did improve some things, but not as quickly or significantly as you were hoping. Am I mis-remembering that? 
 

I read your recent posts on BB and saw that you’ve been going on and off other psychiatric drugs during this time, trying to alleviate some of your symptoms. I believe you mentioned benzos, mirtazipine, propanolol, and now lamotrigine — and maybe another one? Were any of these (besides lamotrigine) in recent months? If this is the case, there is no way to tell if the increase in velnlafaxine is helping or not when you have all these other variables now. Going on another psychoactive drug during this time is very risky … then CT’ing that drug and trying another will only add to your symptoms. I know on SA we suggested that you not add any new medications to the mix. 
 

Can you give us a list of all the different medications you’ve tried in the last year, dosages, and the dates you went on and off them?  Also, please list the dates you increased your beads and how many each time.
 

Looks like you just started the lamotrigine yesterday. What was your provider’s rationale behind this?
 

I’ll wait to respond further until I get a better understanding of all the medication changes you’ve made.

 

Hang in there. 

Edited March 4Mar 4 by FindRest

4 hours ago, FindRest said:

Sorry to hear you are still suffering. I remember back on SA, increasing the dose did improve some things, but not as quickly or significantly as you were hoping. Am I mis-remembering that? 
 

I read your recent posts on BB and saw that you’ve been going on and off other psychiatric drugs during this time, trying to alleviate some of your symptoms. I believe you mentioned benzos, mirtazipine, propanolol, and now lamotrigine — and maybe another one? Were any of these (besides lamotrigine) in recent months? If this is the case, there is no way to tell if the increase in velnlafaxine is helping or not when you have all these other variables now. Going on another psychoactive drug during this time is very risky … then CT’ing that drug and trying another will only add to your symptoms. I know on SA we suggested that you not add any new medications to the mix. 
 

Can you give us a list of all the different medications you’ve tried in the last year, dosages, and the dates you went on and off them?  Also, please list the dates you increased your beads and how many each time.
 

Looks like you just started the lamotrigine yesterday. What was your provider’s rationale behind this?
 

I’ll wait to respond further until I get a better understanding of all the medication changes you’ve made.

 

Hang in there. 

Hey @CharlotteGermany Yes please do update your signature with ALL drugs and dose changes so we can have a nice clear picture!

 

I know you have been feeling terrible this whole time.

 

We are not asking you to tell us you felt well at any point we just want to know if you have felt any improvements, however slight or fleeting, so we can understand if certain things have made you better or not. If you can be clear and provide us with all the information you can, it helps us help you, and that is all we want to do 🙂 

 

Chippy

@CharlotteGermany I just had a meeting with Mark Horowitz and asked him about Lamotrigine. He said no, nothing can treat this except reinstating the original drug, if anything can.

"I want to say thank you again for your replies – it’s great that @LostinCanada and @FindRest are responding to me. I'm glad you're here.

No, I think there was a misunderstanding back then. There were never any improvements. Since the first month, I’ve had maybe one or two days every 4 to 8 weeks without akathisia, but that has nothing to do with the reinstatement. I already suspected back then that this was a misunderstanding. There really is no improvement on any level, except for those brief days where I can speak or watch a little TV. But that is very, very rare and has nothing to do with the beads [micro-tapering]. It happens maybe once every two months, and I've had that from the very beginning. So, it’s happening completely independently of the reinstatement, the increase, or anything else.

Yes, I had to try a few things. I know that switching [medications] isn't good. I wish something would have worked right away, but it didn't. Six weeks ago, I tried a benzo, but it had a paradoxical effect. Then five weeks ago I tried Propranolol for four days, which didn't help. Then an antihistamine once, which sedated me a bit. Then Mirtazapine for four days in a row, but it only sedated me and didn't help me sleep better.

Three weeks ago, I increased the Venlafaxine by two beads, and last week I went back down by two beads. The Lamotrigine is probably a very, very stupid move. My psychiatrist knew about Adele Framer and was adamant that I try it. I should probably just leave it be, shouldn't I? I also don't think it will be particularly helpful given my current symptoms. I know that everything I’m doing right now isn't wise. I feel like I’m doing everything wrong. But I had to do something. My family and I sat down together and we all realized it just can't go on like this. We can't take it anymore, and I have to try something. I wished so much that something would work right away, but it hasn't. I know you advised me against it—I know that—and I’m doubting my own decisions a lot, but I had to act. You mentioned in your post, dear findrest, that you had to try Venlafaxine again because you knew you wouldn't survive otherwise. What would you have done if it hadn't worked? I’m truly interested in that. What can i do? 

 

Hi @CharlotteGermany

 

Thank you for the additional information it’s most helpful. 
 

I’m very sorry to see reinstatement hasn’t worked for you so far. 
 

Your nervous system is clearly very dysregulated right now. I know you and your family are so very desperate for a solution. This is so normal. We all want to be active in our lives and also in our healing. Unlike normal life in healing from a nervous system injury, less is more. Additional drugs only make things worse and prolong our suffering. You have seen this for yourself. There are no quick fixes. 😔

 

What I would do now is hold your dose just where you are. Give it no changes at all. Make sure you are giving your body all the best inputs you can in your diet and not adding things that might not help healing.

 

Here are some things we say to new member's:

 

-Stay Hydrated 

 

-Eat a good clean whole food diet, avoiding processed foods and sugars.

 

-Stay away from caffeine, alcohol and antihistamines and any other psychoactive substances.

 

Supplements are to be avoided initially, as they often irritate our nervous systems. Try to get your nutrition through food.

 

I would keep a daily diary and note your symptoms down on it including other things like sleep, when you take your dose when you eat and so on. Also consider rating each day out of 10. 10 being the worse you could imagine one being minimal symptoms. 
 

like this 

07.00 wake

08.00 breakfast

09.00 take my drug

10.00 hand a headache

and so on

 

It will help to look for patterns which might help make some decisions about your dose. Keep this up for 2 weeks. 
 

Try every thing you can to keep your nervous system as calm as possible. Have some walks in nature, take a nice bath. Anything that works for you. 

 

Try very hard to accept your symptoms and not fight them. I know this sounds strange but it’s a very important skill to grasp. Perhaps you might read this: Acceptance is key

 

Time is your friend and your body knows how to stabilise, all you must do, is not get in its way and keep going to buy the time it needs. 

@CharlotteGermany all I can say is after my reinstatement, I made absolutely no changes for 7 months despite all the agony. Constant dry heaving, losing 50 pounds due to nausea, endless dizziness, brain fog, involuntary mutism, inability to read, inability to watch tv, balance issues, constant crying, si, do/dr, neuropathy, pacing, anxiety, insomnia, sound Intolerance, vision issues. 

After 3.5 years, some of those persist daily, others come back during waves.

I never tried any other drug...not even ibuprofen... nothing.

Adding drugs does not lead to stability....it may mask some symptoms but the probability is further deregulation. 

Your body is in this position from too fast of a taper....it needs peace. Time is your friend...think mo the definitely not days.

We have all suffered and are still suffering from these drugs ...if there was a quick fix, we would have taken it.

Acceptance of the situation is the most important thing at this point.

https://antidepressantrecovery.org/topic/57-acceptance-is-key/?do=getNewComment

 

Edited March 4Mar 4 by LostinCanada

Hi @CharlotteGermany

 

sorry you are still feeling terrible. I don't remember how many mg one bead was in your case. I had quite some success with splitting my daily dose and taking the drug every 12h. If you are very unstable you might wanna do this gradually...but as I mentioned in my thread (if you find the strength you can read more about this there) I think Venlafaxine retard should be taken in a 2x/12h regime instead of once daily and Venlafaxine IR should be avoided at all. The point is that it is not unlikely that you experience interdose withdrawal when taking Venla once daily and this can be very destabilizing. The strength of interdose withdrawal is dose dependent in my opinion...in case you wonder why now and not before.

Another thing that I learned since the last time we met is that I had quite frequently "dose dumping". Certain beverages...for example fruit juices but especially alcoholic and acidic drinks destroy the retard coating of my Venla beads which results in heavy "interdose withdrawal" since the drug gets absorbed very fast and then eliminated very fast from the blood. Never realized this before.

I would say those two are "nobrainers" in case of Venlafaxine...2x/12h retard and avoid bevarages and food that can cause dose dumping...unfortunately I learned about this 20 years too late.

 

Take care!

@CharlotteGermany

 

Hi Charlotte. My story is quite a bit different from yours. But I can tell you for certain that all your changes are creating havoc in your brain. 1 week since your most recent change is why you are feeling so horrifically. 
 

TO echo what everyone else said (and from what I’ve seen in countless people, they're right) Make 0 changes.. NONE. For 8 weeks and then reassess. And honestly, probably longer. Healing comes slowly to the brain, but every little change at this point is going to prevent healing. Adding another drug in your state is not a solid plan. Think of the brain trying to find balance and you’re throwing a WHOLE new drug in that it has to figure out what to do with. 
 

All this to say, I held for many many months. It was 8 weeks at least before I felt like I was leaving the worst behind me. 
 

The name of the game right now is COPE. SA has so many good coping threads that are symptom specific. 
 

Here for you, 

AA

I am so sorry you are going through this..your story made me so sad..

how can the dr and companies keep pushing this poison on people 

 

 

Hi Charlotte,

I’m really sorry it’s so intense right now. When symptoms are this severe, it can feel urgent to do something , or just as urgent to undo something , and that pressure alone can make everything feel even more chaotic and unsettling.

 

You’ve had several medication shifts close together, so it’s possible your nervous system is just overwhelmed and trying to recalibrate.That’s not criticizing your choice. When symptoms are this intense, it’s completely understandable to reach for something that might help, med or non-med. It doesn’t mean you’ve made things worse; it may simply mean your system needs some steadiness now. In that type of situation, sometimes the most stabilizing thing is simply reducing new variables for a while and letting things settle. That doesn’t mean “never change anything”.  It's just that giving your system some consistency can sometimes lower the intensity.

 

At the same time, if a particular symptom becomes unsafe or unmanageable (like extreme akathisia or total insomnia), that’s something to discuss promptly with a medical provider. Seeking assistance for symptom control isn’t a failure on your part; it's to provide stabilization.

 

At this time the priority isn’t predicting how long this will last or wondering if it's permanent, rather It’s helping you get through this phase as safely and steadily as possible. 

 

You can try keeping your dosing consistent day to day; avoiding rapidly new changes unless clearly medically necessary; reducing overstimulation, including scanning for or overthinking symptoms; and keeping safety a priority, including medical guidance as necessary.

You don’t have to plan the entire trajectory right now. Just try to focus on creating a little more steadiness in the next stretch of days.

 

You’re not weak or fragile for struggling with this. Severe medication instability can be brutal,  but it doesn’t mean this is how things will always be.

 

Please ake this one step at a time.

 

@CharlotteGermany

Based on my own experience, I think you should consider:

 

1) Staying on your current venlafaxine dose of 14 beads until things settle down and we can get a baseline.

 

2) Weighing your dose in addition to counting beads. At this stage and with your symptoms, consistency in dose is vital. Aurobindo beads, like Effexor, are not all the same size. Yours have fewer variances, but even those that look the same size can have different amounts of coating and/or active ingredient in them. I can go into the specifics later if you’re interested, but for now, know that a variance in total weight of your beads usually means there is either a variance in dose or a variance in the time-release coating, or both. In other words, if you’re taking 14 beads, you need to weigh them and make sure what you take tomorrow weighs the same as those you take today. At higher doses, this isn’t as important. For someone with a destabilized nervous system who’s on a low dose, it’s vital, IMO. It helped me a great deal. @LostinCanada mentioned the importance of considering the size of beads. Weighing and counting will help take that into consideration for now. If you are unable to weigh the dose yourself, enlist a significant other or family member to do it. It’s that important. If you don’t have a .001mg scale, many here use the Gem20 or an equivalent of that.

 

3) Not adding any other pharmaceuticals or supplements, and re-thinking your use of lamotrigine. What dose are you currently taking?

 

4) Are you taking any other supplements, medications, alcohol, recreational drugs, etc?

 

Edited March 5Mar 5 by FindRest

Leaving this here for you.

 

Preparing Doses for Tapering - Weighing & DIY Liquids

6 hours ago, FindRest said:

It’s that important. If you don’t have a .001mg scale, many here use the Gem20 or an equivalent of that.

Typo. I meant to say a Gem20 0.001g scale.

Thank you all so much for your answers. I really want to thank every single one of you. This is very important to me. It’s very kind of you, and I hope my response isn’t too scattered. I never quite know if I can truly convey how I’m doing and what my life looks like right now, but please believe me: there is no way for me to 'cope' in any way. I lie on my sofa day in and day out, unable to move. Maybe I don’t describe it well enough. I don’t know. But I don’t understand why people are still suggesting that coping could be an option for me. I wish it were, but I haven't been able to do anything for months. I am like paralyzed, as if I had already died. All I can do is breathe; that’s all I’m capable of.

 

I strongly suspected that if I wrote about everything I’ve tried recently, you would think that’s why I’m doing so poorly—but no. The truth is, I’ve been lying here for months with my family caring for me. They are afraid I’m going to die, and that fear grows week by week. For eight months, I did nothing except very slowly add the beads. Then I held the dose for several months. Everything just kept getting worse. I don’t want to take any new medications and I didn’t make this decision lightly. But as I said, we had a long family meeting; my family stands completely behind me and has been present for all the conversations with Horowitz, Nicole, Angie, and Anders. They understood everything, yet they said my situation is no longer endurable. Even Horowitz said he could well understand why I want to try 'capping' (covering the symptoms) at this point and gave me several options. I’ve tried everything except neuroleptics; I’m simply too afraid of those. I’m terrified of destabilizing my system further, but the fact that I am at this point now and feeling so terrible has nothing to do with those attempts. This is how I’ve been for months, and it simply cannot go on like this.

 

I would love to go to a clinic, but that is not an option for me or my family. I was there during my first withdrawal and I am still traumatized to this day; they have no idea what they are doing. So please don't get me wrong, I am very grateful for your ideas, but my situation is severe and life-threatening. On most days, I can’t even speak because of my symptoms. I need some form of stabilization. I understand the advice not to change anything anymore, but I followed that for months and I only got worse and worse. That’s why it’s so frustrating to hear that I shouldn’t change anything now. I understand it all, I really do, but I’ve also read many accounts from people who ultimately said that if they hadn't 'capped' the symptoms, they would have died.

 

I wished so much that I could try something and it would help immediately. I know you can’t recommend other things to me. I lie here and scream and cry and scream and cry. Dear Alfred, thank you for your idea. But I wouldn’t dare to split the dose. But how wonderful that you found a way that works for you. What I could imagine, however, is never looking at those beads again. I bought two scales, but they are too inaccurate. The AI tells me that I can’t manage it with any [consumer] scale. It has to be done by a pharmacy because they have the proper equipment. I asked, but they said they won't do it. I have now ordered the scale you suggested and will try one more time. Do you weigh only the beads or the capsule as well? And do you also think going higher is pointless now because there’s just no improvement? But you know, I’m so afraid that my body might not be able to tolerate the Venlafaxine at all anymore and that I can’t heal if I keep taking it. Do you think that’s possible?

Yes, feel free to tell me more about weighing and the pellets. I also read what you wrote about the release, but I really have only very, very few small and large pellets. Most of them are actually medium-sized. And should I still make sure to include both small and large ones? I’m not taking anything else except iron, because my iron level is extremely low. I have stopped taking the Lamotrigine again. Thank you for questioning that once more. I’m just so overwhelmed with everything.

 

I hope you don’t misunderstand my message. I am just so, so, so desperate and I need to get out of this body. But I thank you very much for your replies anyway. It does me good to read your messages, but some things are just really missing the point of my reality and that of my family. I hope you understand that. Iam not able to cope or do nothing. Ive tried that so long. 

Edited March 5Mar 5 by CharlotteGermany