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Thanks. I have been altering my diet for the last six months with minor improvements in some things but, as I say, I have only just learnt that it was the benzodiazepine medication Lorazepam which caused this so I haven't yet had time to try to tailor supplementation for the condition. Prior to six months ago doctors kept telling me not to do anything to try to fix my condition, still trusting the psychiatrists from a decade ago that I was either faking my condition, was delusional, or was a hypochondriac. I don't struggle to breathe as hard when walking as I did before altering my diet and I'm able to eat more and healthier than I used to but that's been the limit of my improvement to date. However, now that I know that the dysfunction is in the GABA-A receptors I am looking for natural substances which help to modulate their function. So far the only thing I've found is Sideritis; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4384808/ I can only speculate whether it is likely to have any effect at the moment and it may be a while before I'm able to obtain either that or something else to be able to test the theory.

This has completely destroyed me. I’m 19 months off and I don’t see things ever getting anywhere near normal again. I’ve lost so much weight and muscle mass, I can’t eat loads of foods due to reactions, mcas like symptoms which antihistamines and meds are not touching, gut issues( done a 3 day comprehensive stool tests and so much bad bacteria, parasites and not much good bacteria.) weak abs no energy, dizziness and heart rate all over the place. I am at a total loss. I have two young kids and I’ve pretty much been absent the last two years due to how severe these symptoms are.

I’m sorry to hear that even after 10 years you’re still having difficulties. Do the supplements help?

I know what you mean. I'm over a decade after treatment with the benzodiazepines went wrong, without the treating psychiatrist recognising it, and have been on disability support since a year and a half after it happened. I only just learned that my condition fits with that of BIND and it has answered so many questions.

@Gridley 🥺

I had on fluvoxamineit is really nasty meds!!! Almost 2 years I have still some symptoms remains, it is withdraw symptoms, pls check your meds brand for liquid does it same market brand? And pls remember any change in your dosage may reveal such thing and last thing is fluvoxamine is short half life meds and should take twice a day, every 12 hours. I switch to clomipramine and Mirtazapin you can read my messed up meds story ...

Hi @dangerous7 I'd have a read of this link: Taking multiple psych drugs? Which drug to taper first? No, not recommended. If you taper multiple drugs at the same time, when WD symptoms hit, you won't know what was the cause. Unfortunately, I have no personal experience with the medications you are taking, so I can't offer any further insights. Emonda

Hi Jami, You asked me offline about sleep: Melatonin for sleep. I find this helpful. As to how long does recovery take? It's different for everyone. At times at the start of my journey, I felt like I was just getting by minute by minute. Then it extended to day to day, week to week. With time, patience and much encouragement from reading success stories on this site, I find myself in a good place these days. I still experience the things on the WD checklist each time I adjust my dose, but the symptoms are generally mild. I hope this helps.

Another update: I am thinking that updose was not the right thing to do. I woke up out of a dead sleep in panic about peak time that the drug hits. Scared the crap out of me. My shoulders are tight and head hurts, I feel electric pulses like I’m plugged in. Is it safe to go back to 1.7 my next dose? This is crazy. That’s not even a 3 percent increase 😩 im messing me self up left and right. I hate this. Not sure how to tag an admin for advice.

@LotusRising I only took the pregablin for about 4 days then stopped. Should I be worried about withdrawal from that or shoukd it be OK because it was only 4 days?

@FindRest & @Onmyway Thank you both for the kind advice - it is much appreciated!

Feeling just like my old self. It feels so disgusting. Please let me go... But I know I should accept it rather than to neglect it.

I really appreciate this Emonda. I have had family members (who have been very supportive, but who haven't read any of the information I have passed on to them to help them understand what I'm going through) upping the pressure to resume a full standard dose. It is so easy when I'm in difficulty to feel like I must need the drug, particularly when this has been my only path back to sanity when I have had withdrawals in the past (without knowing that's what they were). There were of course difficult times in life that led me to take the drug in the first place and that weighs on me as well during the waves. What I experience in the waves is quite different to back then and my attitude towards myself and life, as well as my coping skills, has changed completely. But the fact both are instances of mental/nervous distress with some of the same dark themes emerging, can make it easy to confuse what I am experiencing with those bad times. Reinstating at a lower dose has taken away the more purely physical symptoms like dizziness and definitely taken the edge off the worst of the fear and dread - at least most of the time. But life really is in a limited limbo state - despite the good days and weeks - and sometimes I would try anything to help bring this painful chapter to an end sooner - especially since this is just to stabilise before tapering. Thank you again. You are very generous with your time.

What side effects have others experienced from taking vit d?

Update, Still holding on clompiramine as have low energy overall for last 4 or 5 days, depressive thoughts as well. Energy and low mood starts picking up towards midday / afternoon. Intrusive images have increased from 1 a day to 20 a day over the course of last 3 or so weeks. Will give it more time to see if these symptoms settle only then will taper further. Also have dropped Valium from 2.5mg to 2.0 mg from 13th April. Holding that as well till the symptoms subside. It is scary as the intrusive images are similar to what I had before I was put on clomipramine to being with. Hypnic jerks are still relatively under control, I do wake up few times everynight but instead of painful muscle tightness it is more like restlessness.

@Tom2020 What reaction do you get from vit d? I only took pregablin for 4 days and then stopped. I was using it for pain but it wasn't really doing anything apart from give me side effects so I stopped it

No windows today. Pushed myself anyway- exercised, read, sat outside. I made a pact with my husband to take my phone during the day. I’m not sure if that made me worse or helped. NOTHING relieves the anxiety at this point. Just constant agony. Tomorrow I get to have a meeting with Angie Peacock for some hope and guidance. I did updose back to 1.76 tonight. I really hope I made the right decision. It’s been 8 days of horror and I just cannot take it anymore.

Great Thankyou , the less money I have to spend with these drugs the better .

@Tom2020 >What did you take pregablin for? I took it for anxiety. Are you getting any benefit from pregabalin? Are the side effects improving? How much are you taking? I react badly to vitamins D and C and probably others. You are not crazy. Your doctor simply doesn't know what s/he's talking about. I find D stimulating, though my reaction is not nearly as bad as yours.

Hey Koala, Another person has kindly read your thread and agrees that option 1 makes the most sense. They said they wouldn't add anything that I haven't mentioned already. It's not a nice process, is it... Keep pushing.

Reviewing the past month, I’m noting sustained benefits at this lower dose: * motivation! * energy! * my word-finding problems from March are notably better My one concern is: * involuntary movement of facial muscles. This mostly happens when tired, closer to my nightly dose. Currently my eye is involved & sometimes one cheek muscle. It is fleeting & has improved over the month.

Hi @HonestAbe, thank you for the information. It is exactly what I needed. I can see from it that you have made multiple changes in the last couple of years in multiple pills. I can count at least 9 changes - (attempt to quit escitalopram, addition of trazodone, addition of wellbutrin, CT of wellbutrin, addition of trintellix, CT of trintellix, addition of venlafaxine, taper of venlafaxine, addition of pregabalin, cut of pregabalin). Your poor nervous system doesn't know what hit it or what to do with all of this. To recover from this - you need stability - no adding or subtracting new drugs. However, I would suggest that you should go back close to your previous dose of Venlafaxine. I would suggest trying back to 150 rather than 187 as your body may have made some adaptations by now. You could even try lower and see how you react. What happens when you make so many changes with psychiatric drugs is that your nervous system becomes hypersensitive so the addition of new drugs or changes results in activation and more agitation. It may also make subsequent withdrawals much worse (this is well documented in alcohol withdrawal where multiple withdrawals make subsequent ones much worse in proper alcoholism). Here is a thread on hypersensitivity and kindling from SA. If I were you, I would titrate up the Venlafaxine and stop titrating up if it makes you more agitated. I would then stay at that dose for a good many months not changing any of the other drugs. I would then slowly taper venlafaxine (10% or less of previous dose every 4 weeks). After that I would taper trazodone or pregabalin. These recommendations may change depending on how you react to the tapering and updosing of venlafaxine or the other drugs. You may update us if you need help in that. This may be a painful process and may last a long time. However, it is a temporary process (years, I would say) and we see that people do get better. I am not sure what to do with pregabalin. It is generally easier to come off of (based on my observations here) but I don't have as much experience and my observations aren't that significant. Could you come off of it faster if it is not helping? I don't know. I will ask other moderators what they think. You may be tempted to try to optimize a cocktail that will give you some relief and I totally understand that but it is likely to exacerbate the current problem so I would advise caution there. And trust me things can get much much worse (you can have a look at some of the symptoms here). Psychiatrists keep adding and subtracting drugs in these cases. You will probably be offered some non-traditional psych drugs or low doses of atypical antipsychotics or likely some tricyclics for nerve pain. If that doesn't work, often other more drastic measures are suggested like ECT and you would be labeled treatment resistant. But the real culprit here seems to be iatrogenic. If you decided to work with a psychiatrist on optimizing cocktails we wouldn't really be part of that. If you want to come off of the drugs we can provide help. I hope you start feeling better soon. OMW I am also going to add a thread on withdrawal symptoms and the brain.

Hello Lotus thanks for asking Well you know . I just need to be able to work my life idk Is kind of over i Guess but If im not able to work thats anothrr story i have a 8 yo boy AND i live in a poor country so that need to keep going i dont have insurance or anything i dream with a better life . Im on seroquel 123 MG still AND doses of ativan Is 0.95mg 8 am 1 MG 2 PM 0.95mg 8 pm so my head Is pff . Struggling every day . I got a virus that live in cns . Herpes simple . For normal people Is not that bad but for me Is a bomb . When i dont sleep i feel less anhedonic But herp3w come put AND feel very bad so Is bad bad . Idk i just work to pay bills then i try to rest AND thats it . I Made lots of mistakes . Is good to some one ask how are you so gracias

Pray for me.please