LouiseL: escitalopram and benzodiazepine withdrawal that keeps on going - help

June 20

Hi @LouiseL
SO sorry to read your story. Mine is in many ways the same, but yours still made me yell out in rage. I am so sorry. (Jeg er SÅ ked af at læse det, Louise!)

I can see that you have a therapist. I have one of the very very few others in DK taking this seriously. So, that's good..

I'm here, if... ❤️

June 22

Hi @Kathrine

Thank you so much for your post (tak 🥹!). I actually read it right away and got really happy/touched (I mean/ not happy that you got angry on my behalf but … yeah, you know 😅).

I feel incredibly alone with this condition most of the time around IRL people — and have even developed a kind of instant paranoia that people will think I’m lying / a total freak, when I share my story and condition. So, it’s always so nice to be validated 🥲

I actually want to write a whole bunch of more stuff but am very tired right now. Will try to write more very soon and also read your full story. 😊

Lots of love and Danishes 🍰 hehe,

Louise

June 22

2 hours ago, LouiseL said:

Hi @Kathrine

Thank you so much for your post (tak 🥹!). I actually read it right away and got really happy/touched (I mean/ not happy that you got angry on my behalf but … yeah, you know 😅).

I feel incredibly alone with this condition most of the time around IRL people — and have even developed a kind of instant paranoia that people will think I’m lying / a total freak, when I share my story and condition. So, it’s always so nice to be validated 🥲

I actually want to write a whole bunch of more stuff but am very tired right now. Will try to write more very soon and also read your full story. 😊

Lots of love and Danishes 🍰 hehe,

Louise

I get it. I hardly tell people either, but then once in a while I meet people that tell me THEIR story of withdrawal with just a few generel words about psychiatry from my mouth. And then I tell. By the way, watch "En særlig samtale" on DR1 with Kasper Hjulmand. Notice what happens when they talk about wrong diagnosing... It will make you feel a little bit better, I promise. Oh, and do you know Medicinsk Rådgivning? Look them up on Facebook or call them. Believe me, we are NOT alone I Denmark, and there are psychiatrists that are fighting this fight too. Promise.

Let me know if you want my contact details. (And if I don't reply right away, I am just in a WD wave. Again: No pressure, but I could definitely use someone to talk to too from time to time - just to say "AAAARGH I F'ING HATE THIS" if nothing else. 😉 It seems by the way you write, the fact that you had a look in your journal and more that we might have some things in common. But for now, all I want is to say: Thinking of you. (Jeg tænker på dig, og jeg håber, du snart får lidt modvind. Jeg er ikke selv for godt kørende, men jeg klarer den lige nu).

June 23

23 hours ago, Kathrine said:

I get it. I hardly tell people either, but then once in a while I meet people that tell me THEIR story of withdrawal with just a few generel words about psychiatry from my mouth. And then I tell. By the way, watch "En særlig samtale" on DR1 with Kasper Hjulmand. Notice what happens when they talk about wrong diagnosing... It will make you feel a little bit better, I promise. Oh, and do you know Medicinsk Rådgivning? Look them up on Facebook or call them. Believe me, we are NOT alone I Denmark, and there are psychiatrists that are fighting this fight too. Promise.

Let me know if you want my contact details. (And if I don't reply right away, I am just in a WD wave. Again: No pressure, but I could definitely use someone to talk to too from time to time - just to say "AAAARGH I F'ING HATE THIS" if nothing else. 😉 It seems by the way you write, the fact that you had a look in your journal and more that we might have some things in common. But for now, all I want is to say: Thinking of you. (Jeg tænker på dig, og jeg håber, du snart får lidt modvind. Jeg er ikke selv for godt kørende, men jeg klarer den lige nu).

Hi
I actually feel like I tell everyone around me hehe, because, sigh, they need to know that I don’t function as “normal” as I used to, right now. I’ve actually been gathering courage to tell about my experience with WD and the Danish Psychiatry on Facebook for a long time (I don’t use Facebook very much atm though - only to bum people out with sad posts, remembering my ex-boyfriend … 🥲).

I just watched the En Særlig Samtale episode — oh wow ! What a touching moment / lots of touching moments. Thanks for sharing that! It did make me feel a little better And what an awesomely not-afraid-to-cry man our national football trainer is!

I would love to have your contact details Feel free to write me a PM / or I can write you one, hehe. And thanks to @Arielfor connecting us / and for calling me a superstar. Or rock star? Something really lovely 🥹 I can report that my robot vacuum cleaner so far works very well. 🤓

If anyone is interested, I thought about writing a little general summary of where I am now in my WD journey, with symptoms, progress etc. But the key take away is: There actually IS progress. ❤️

Lots of love
Louise

July 1

@LouiseL

Thinking of you and sending healing vibes <3

July 13

On 7/1/2024 at 9:59 PM, Ariel said:

@LouiseL

Thinking of you and sending healing vibes ❤️

Hi ☺️ I’m SO SORRY I reply so late to these wonderful messages! Thank you SO much for thinking about me and sending good vibes right back at ya!
🥹☺️

I thought about writing a general little update. But I actually find that a bit tricky 😅-

-BUT, what I can say is that the other day, I took the train for about 40 minutes, with my electrical scooter 🛴 to get it repaired, then dropped it off, then WALKED about 1 mile back to the train station. 🥳

And this weekend I went to look at a bike on Danish Craig’s List (haven’t biked in 5 years), then visited family and played Danish Monopoly for … 5 hours (?!?) with my mom, aunt, cousin, cousin’s husband and cousin’s son ( = loud, very cognitively demanding, lots of stuff going on!).

And doing those activities seemed TOTALLY impossible just half a year ago. So, something must be happening — and healing — I guess 😅😊

But that being said, I still do have symptoms every single day. 😔

I actually found this drawing, I made two years ago… and thought mmmaaaybe I’d share it? It’s basically got ALL of the symptoms I’ve experienced during WD / while being on psycho-active drugs (and it’s possible I’ve even missed some).

But … warning! Ahem, some of it might be kind of eh, creepy 😔… For instance, particularly right after stopping Lexapro and Pregabalin (at the same time, thanks doctors.. 🤦‍♀️), I suddenly had some seriously terrifying violent urges — like, intrusive thoughts about hurting animals ( 😰😔 - side note: I really am such an animal lover, I don’t even kill spiders, I catch them and release them out the window 🩷🕷️… so experiencing this was just horrible 😔).

Anyway… Yeah. At that point in 2021, graphic violence ( 😱?!) weirdly seemed to calm my nervous system (?!?)- so, sometimes I would look at violent video games online and it would soothe my WD symptoms (😰?!!). THAT has luckily gone away! <— I’m saying all of this because this drawing may at one point heavily suggest that I wanted to very graphically hurt the ehm, doctors who “did this” to me. 😬

BUT!

Almost every single symptom in this drawing has greatly diminished, or comes and goes or has even almost vanished completely. Just saying — to anyone who might be in the middle of the worst of it right now — there truly is hope 🩷

So, here is the drawing 😊 Hope you won’t mega-judge me, hahah… 😬☺️

All the best and lots of love and healing thoughts,

Louise from Denmark 🇩🇰😊

PS: I have to downsize the drawing but it’s coming right up, if anyone cares !

July 13

July 13

10 hours ago, LouiseL said:

Your picture is such a good description of the psychological issues which I experienced when benzodiazepine withdrawal set in that I forwarded it to my psychologist, hope you don't mind. Rather than diagnose the withdrawal the treating psychiatrists all chose to separately diagnose each symptom so I wound up with so many psychiatric conditions that I actually lost track, lol. Like yourself the severity of my symptoms eased after five years; mine had been worsened by SSRI induced thunderclap headaches and adrenergic storming so took a bit longer. Did you experience any tics? Because of the adrenergic storming, when the severity of the akathisia grew worse I couldn't stop myself from punching myself in the head.

July 13

59 minutes ago, Barry2954 said:

Your picture is such a good description of the psychological issues which I experienced when benzodiazepine withdrawal set in that I forwarded it to my psychologist, hope you don't mind. Rather than diagnose the withdrawal the treating psychiatrists all chose to separately diagnose each symptom so I wound up with so many psychiatric conditions that I actually lost track, lol. Like yourself the severity of my symptoms eased after five years; mine had been worsened by SSRI induced thunderclap headaches and adrenergic storming so took a bit longer. Did you experience any tics? Because of the adrenergic storming, when the severity of the akathisia grew worse I couldn't stop myself from punching myself in the head.

Hi @Barry2954

Wauw- no I don’t mind at all hehe, I feel honored and glad someone found this useful! 🥹

I’m so so sorry though to hear you went through all that. Man 😕 Part of me also gets a bit… nervous (and sad and angry on your behalf!😔) that it took you five years. But another part of me has accepted that this is a looong recovery.

Tics- actually … I did do some seriously crazy things around the times I’ve come off of especially benzodiazepines. 😕

Like, these extreme urges to eh make a mess or throw things. I am definitely not proud to talk about this, but I did have fits of throwing- particularly, food ( 🤦‍♀️). It wasn’t because I was angry or stressed or …. crazy (well, crazy from withdrawal…!)- but just these extremely untamable urges to run amok // tics maybe, in some way?

I come off as completely insane, don’t I ? 😅

But yeah, I recognize doing “tics” that feel crazy but are just nearly impossible to stop 😕

Im so sorry you were given so many diagnoses. It all sounds so familiar. Do you think my drawing will help your psychiatrist realize something new about your situation then ?

How are you these days?

All the best! 😊

Louise

July 13

On this site, there is also a graphic thing that might be useful ? About benzo withdrawal.

https://www.verywellmind.com/benzodiazepine-withdrawal-4588452

☺️

July 14

2 hours ago, LouiseL said:

Hi @Barry2954

Wauw- no I don’t mind at all hehe, I feel honored and glad someone found this useful! 🥹

I’m so so sorry though to hear you went through all that. Man 😕 Part of me also gets a bit… nervous (and sad and angry on your behalf!😔) that it took you five years. But another part of me has accepted that this is a looong recovery.

Tics- actually … I did do some seriously crazy things around the times I’ve come off of especially benzodiazepines. 😕

Like, these extreme urges to eh make a mess or throw things. I am definitely not proud to talk about this, but I did have fits of throwing- particularly, food ( 🤦‍♀️). It wasn’t because I was angry or stressed or …. crazy (well, crazy from withdrawal…!)- but just these extremely untamable urges to run amok // tics maybe, in some way?

I come off as completely insane, don’t I ? 😅

But yeah, I recognize doing “tics” that feel crazy but are just nearly impossible to stop 😕

Im so sorry you were given so many diagnoses. It all sounds so familiar. Do you think my drawing will help your psychiatrist realize something new about your situation then ?

How are you these days?

All the best! 😊

Louise

Lol, I destroyed so many phones and other stuff with the throwing. As you say, there were too many bizarre behaviours which the benzodiazepine withdrawal, whether you call it PAWS (post acute withdrawal syndrome) or BIND (benzodiazepine induced neurological dysfunction), induced that I just stopped worrying about appearing sane.

I only learnt that my condition was caused by benzodiazepine withdrawal earlier this year after finding an article called "BIND; the patient experience" online. Sorry I can't provide a link but it's a commercial site. That really helped my psychologist to understand my symptoms. I was lucky enough to be able to get away from the psychiatrists in less than a year after they assumed responsibility for my condition. I had kept telling them that the cause of my psychological issues had been toxic exposures in a toxic workplace but they refused to permit me the medical investigations to prove it. By the end they were glad to be rid of me, since everything they did only worsened my condition. The problem after that was that they claimed that I was faking all of my symptoms so it became almost impossible to investigate what was really happening to my health and I was completely incapacitated after a year and a half. Antibiotics and the removal of my gall bladder, to stop repeated gallstones, have both made significant differences to my health. I am putting down the remainder of my remaining symptoms to the benzodiazepines.

Your picture helps by making the information much simpler and easier to understand. My brother struggles with understanding research or medical information so your picture may be just what he needs. I think that your picture will help my psychologist to see that the issues which I have described to him, over the last six years, are common experiences with the benzodiazepine withdrawal just like the BIND article contended so thank you for posting it.

July 14

I didn't think to say that I regret what you have had to go through too and forgot to answer your question about how I am now. I'm over ten years after the withdrawal commenced. The adrenergic storming ended over five years ago so the worst of the urges, including the constant urge to kill anyone who came close to me, eased then. The treating psychiatrist, trying to cover up his repeated screw ups, urged me to go on a killing spree and every professional that I tried to get help from kept telling me to trust him. In order to try to control the urge to kill I focused on killing psychiatrists and, like yourself, played the Elder Scrolls games on Playstation and Xbox to manage my symptoms. Other games either tended to set off my urges or cause nausea and dizziness. My psychologist has reassured me that my continuing urge to kill psychiatrists is completely understandable given everything which they did to me.

The psychiatrists must have overdosed me with the benzodiazepines as I quickly developed respiratory failure after cessation of treatment with them. Nothing so far has improved that condition and it greatly limits my capacity for activity. I currently have a comprehensive complaint (400 pages of medical records and explanations) in with the government regarding all of this. Whether they will choose to acknowledge my evidence or not I can't say but I still haven't worked out how to gain access to the psychiatrists records yet so there's still going to be more evidence available if I need it. Of course the brain fog is still ever present though it has greatly helped me that I now understand why I have it and have developed strategies for working around it.

July 18

I didn't think to ask before but, with the onset of the benzo withdrawal, did you find it increasingly difficult to read novels? I had read novels for most of my life yet quickly found it impossible to make it through several pages without completely losing track of what I had read.

July 26

@LouiseL

I'm so happy to read this:

On 7/13/2024 at 12:11 PM, LouiseL said:

Almost every single symptom in this drawing has greatly diminished, or comes and goes or has even almost vanished completely. Just saying — to anyone who might be in the middle of the worst of it right now — there truly is hope 🩷

On 7/13/2024 at 12:11 PM, LouiseL said:

what I can say is that the other day, I took the train for about 40 minutes, with my electrical scooter 🛴 to get it repaired, then dropped it off, then WALKED about 1 mile back to the train station. 🥳

And this weekend I went to look at a bike on Danish Craig’s List (haven’t biked in 5 years), then visited family and played Danish Monopoly for … 5 hours (?!?) with my mom, aunt, cousin, cousin’s husband and cousin’s son ( = loud, very cognitively demanding, lots of stuff going on!).

And doing those activities seemed TOTALLY impossible just half a year ago. So, something must be happening — and healing — I guess

It actually brought grateful tears to my eyes to read that you are experiencing such clear signs of progress.

I know it can sometimes be challenging to see/acknowledge and let ourselves feel/celebrate positive change, and I'm sending you big hugs for sharing this. You are very brave!

And:

On 7/13/2024 at 12:11 PM, LouiseL said:

that being said, I still do have symptoms every single day. 😔

I do understand about this. I know it's complicated. It's living in the both-and.

Healing is happening AND things are still far from where/how we'd like them to be. And that's okay, there's room for both, and one doesn't negate the other.

I think you're awesome and so smart (and your drawings are fabulous) and doing a great job all around, truly.

Celebrating you and how far you've come!

And holding space for your experience, recognizing that it's complex and that life includes joy and grief, and we are ever spiraling between and around and through it all...

Love,

Ariel

July 26

@Ariel thank you so so much. It’s incredible how sometimes the right messages comes at the right time. 🥲

What I mean is, sadly, I’ve had some worse days again. Burning in my arms/ like, under my skin in general, a loud sort of a hiissss sound in my head / like my head is covered in cotton?, unable to do stuff (and at the same time stressing over feeling like my life is slipping away from me- oh man. Sorry if that was too dark). I’ve also just been ehm, lying in my bed just now, looking at videos of my ex boyfriend and yeah, just missing how life was back when he was alive and we lived together where and we also had our little dog and- yeah. Our normal little life together 🥹😊🥲🩷

…. So getting a message saying I am brave was very much appreciated *happy tears *. Thank you kind kind kind Arial from SurvivingAntidepressants.org 🥹 Thank you for checking in on me. And I’m sorry, in general, for not being all that good at replying.

Actually- I wanted to ask the “community” about something — I genuinely feel like sugar (which I have suddenly been eating a lot of lately, partly attributed to social events; cake, candy, ice cream, soda etc.) worsens my symptoms. Can anyone relate to this? And does anyone know why?

Ok im gonna have to stop writing now because WD symptoms. But thank you! And also I will reply to you @Barry2954 soon :)!

All the best 🩷

louise

July 26

Hi @LouiseL

Big hugs to you.

I'm sorry you've been dealing with these worse days and uncomfortable/unpleasant symptoms.

My heart goes out to you for your loss. I think it's good you're allowing yourself to grieve. Even though it hurts it's important to make space for that when it comes and allow yourself to feel it. Let the emotions move through you.

And yes, I do think you're brave! For all of the above, and more.

7 minutes ago, LouiseL said:

Actually- I wanted to ask the “community” about something — I genuinely feel like sugar (which I have suddenly been eating a lot of lately, partly attributed to social events; cake, candy, ice cream, soda etc.) worsens my symptoms. Can anyone relate to this? And does anyone know why?

Totally normal and common. What you're experiencing is 100% real!

I've had to cut out sugar entirely due to WD/PAWS, it's been several years at this point. Sugar (all kinds) makes me feel so much worse, brings on symptoms and intensifies what's already there.

Many (and maybe most) people experience this.

I'm no expert as to why. I think there are numerous reasons for this, among them:

a) sugar causes inflammation in the body (this is true for all humans, not only WD sufferers); inflammation exacerbates pre-existing conditions such as aches, pains, brain fog, etc.

b) sugar is a neuro-toxin (excitatory) and can impair cognitive function, incl. memory, attention, learning, as well as induce negative effects in mood, incl. anxiety and depression (this is all in otherwise healthy people)

c) when we eat sugar (high glycemic index) the intense spike in blood sugar makes a big impact on our highly sensitized/destabilized WD nervous systems; the so-called "sugar high" effect that happens in healthy people can be perceived by us in WD as very unpleasant, because we react strongly to endogenous biochemical fluctuations (we're very sensitized to hormone shifts, e.g. cortisol spikes, hormone changes during menstrual cycle, adrenalin rushes, etc.); our overloaded brains and nervous systems tend to interpret any such signaling as "dangerous" and react by going into fight or flight mode -> throwing us off balance

d) the gut-brain connection; I've read that most of the body's serotonin receptors are in the gut (maybe like 70%? sorry, don't remember the source of info), which is one of the multiple reasons why our digestive systems are so impacted by WD. what we eat makes a huge difference in how we feel bc the gut sends so much information to the brain, incl. signaling as to whether we're safe or not. the chemical impact of sugar on our guts is so intense that basically our bodies freak out and get overstimulated and the gut tells the brain there is danger. (this is a totally unscientific explanation and I could be very wrong about all of it, except the basic stuff about our guts being sensitized and communicating with our brains)

e) much more!

Anyway, best to avoid sugar entirely, in my opinion. For me it's not worth it, sugar gives me the worst DP/DR, messes with my fragile sleep, increases fatigue and pain, throws me into waves, makes me sweat and gives me anxiety... I've also eliminated caffeine, alcohol, gluten, dairy, artificial sweeteners, many other substances.

Don't despair, though. If you read success stories in the recovery forum, many people say once they healed they were able to go right back to eating all the sugar they wanted with no ill effects! So if you give it up for now that doesn't necessarily mean you won't be able to return to it in the future, if you choose to do so. That being said, many people who don't suffer from WD give up sugar and never go back. Once we stop eating it we come to realize what a powerful drug it is and how it doesn't really do us much good, healthy or not.

If you want to keep sugar in your life, try eating only small amounts at a time, and only ever as part of a larger meal, so that you're ingesting healthful proteins and fats in the same sitting. This will help offset the worst of the blood sugar spike because the protein, fat (and maybe fibers and antioxidants from hearty vegetables) will "cushion" digestion. So for example, don't have sugary snacks (cake, ice cream, soda, etc.) on their own in between meals, as that will be too intense for your system. Instead, our might incorporate a smaller serving as dessert after a balanced meal.

Trial and error, practice makes perfect.

I'll be curious to hear how it goes, if you feel like updating once you've played around with things for a while!

Hugs to you, Louise, wishing you a gentle night <3

Ariel

July 28

@Ariel - Thank you so much for that post! 🥹 You’re so awesome 🥲☺️

Actually… Food has been a major thing on my mind for a couple of years now. 😓 I’ve just felt like food is one thing that I can control. And I have been / am extremely focused on trying to eat healthy (to the point where my doctor told me half a year ago that I needed a MORE cholesterol, because the numbers were simply a little too low (I have been close to underweight — not anything extreme but close to underweight… In part because I’ve been losing muscle mass in my legs because I haven’t walked very much because I’ve felt so awful because of — ya guessed it! — withdrawal! 😁👍)).

My “ideal” food is totally also sugar free, dairy free (dairy truly does do something weird to my body!), no e-numbers, is organic, is on the lower side of the FODMAP spectrum (do you know what FODMAP is ? :)), and minimally processed, if at all … but, to me that’s just been so difficult to live by with WD because of no energy. Then it’s a vicious cycle where I either eat too little because I don’t have the strength to cook / eat according to my WD friendly plan, OR I am simply so tired BUT hungry, that I reach for the Wolt app and order a large burger menu from my bed. And then I feel like I’ve been giving myself a hard time, telling myself that I must have an eating disorder for wanting to eat so restrictively. So basically gaslighting myself 🤦‍♀️

My point is: I actually am so happy to hear that you also are cutting out a lot of stuff (basically the same as me :)) and that helps you aka. maybe I don’t have a crazy restrictive eating disorder, maybe I just have WD 😅

But yeah. I sometimes feel like if I JUUUST ate 100% “correct” I’d feel better.

I think I am … slowly finding my way towards a good way of eating. But it has really been something I’ve had on my mind constantly. So maybe having WD HAS sort of given me an eating disorder.

(As I’m writing this I’m a bit arghhh WD foggy so hope it’s not just a wall of incoherent text

… Also, I have to start at a “forced” stress management course on Tuesday and… I’m a little skeptical about that hehe… I’m gonna learn how to: “handle negative thoughts and difficult emotions, learn constructive stress management skills, let go of worries and focus on what brings meaning to our lives and not let outside things distract us.”

Like…

….. not to be an arrogant b*tch but I feel like us with long lasting antidep withdrawal all have a fricking PHD in all of those areas by now! 😅

…….. And the shrink seemed skeptical of WD when I told him in a phone conversation, so that’s encouraging too 😃!

Sorry- I’m being arrogant and whiny But ugh, hehe…. Oh well. Maybe I will actually learn something. 🧐)

Thanks to whoever is reading this mind dump of mine.

🩷

Louise

July 30

Hi @LouiseL

On 7/28/2024 at 10:26 PM, LouiseL said:

Actually… Food has been a major thing on my mind for a couple of years now. 😓 I’ve just felt like food is one thing that I can control. And I have been / am extremely focused on trying to eat healthy (to the point where my doctor told me half a year ago that I needed a MORE cholesterol, because the numbers were simply a little too low (I have been close to underweight — not anything extreme but close to underweight… In part because I’ve been losing muscle mass in my legs because I haven’t walked very much because I’ve felt so awful because of — ya guessed it! — withdrawal! 😁👍)).

Maybe you know this already -- and just in case it bears repeating -- in order to maintain muscle mass, the body needs to

a) get sufficient protein

b) get regular exercise/strength train

c) get enough energy (consume enough calories).

That's the trifecta. Ideally all three factors are present, and sometimes we can get away with only one or two.

What can easily happen as a result of lifestyle changes forced by chronic illness is the exact opposite of the above:

a) we don't eat enough protein

b) we don't move/exercise enough, and maybe even are bedridden/extremely sedentary for extended periods of time

c) we don't consume enough calories

That's the perfect storm. When we don't get enough calories AND we don't eat enough protein, our bodies catabolize muscle mass to use for energy (especially in the case of a primarily carbohydrate-fueled metabolism; it's a little different with fat-adapted metabolism, depending on available fat stores, but the basic principle is the same). So it's crucial to eat enough calories to fuel the body sufficiently so that it doesn't need to break down muscle for energy. If we are undereating (i.e. not meeting caloric needs) and we are also sedentary, it's all the more important to ingest adequate protein to protect existing muscle mass. (There are differing opinions on what constitutes "adequate" protein; personally I use the rule of thumb of approximately 2g protein per kilogram of body weight. I know it may sound like a lot! At first it blew my mind, too. There is solid scientific evidence backing this up, though.)

To add insult to injury, age does play a role here. The older we get the less efficient our bodies are at synthesizing and maintaining muscle, and we have to work harder to protect what we've got (not to mention building muscle, if that's the goal). Without targeted interventions, in our 30s we naturally start to lose muscle mass, and then at a steadily increasing rate as we age.

My approach to this in PAWS has been to increase my protein intake and ensure that I'm eating enough calories. Because my WD symptoms include exercise intolerance and debilitating fatigue, it's very limited what I can do on the exercise front. Insomuch as possible I prioritize regular gentle movement in whatever forms are available to me; however, I'm rarely able to control my capacity in this regard. (Case in point, I'm writing this while lying on the couch, having crashed last week and spent the past 5 days housebound and pretty much bedridden.) As you so rightly point out, food is an area where we have some influence.

I strive to get enough healthy fats as well as generous quantities of high-quality protein. The good fats are neuro-protective and very important to our healing brains, as well as the rest of our systems. They also help us reach adequate calorie intake, which in turn contributes to protecting precious muscle mass.

On 7/28/2024 at 10:26 PM, LouiseL said:

My “ideal” food is totally also sugar free, dairy free (dairy truly does do something weird to my body!), no e-numbers, is organic, is on the lower side of the FODMAP spectrum (do you know what FODMAP is ? :)), and minimally processed, if at all … but, to me that’s just been so difficult to live by with WD because of no energy. Then it’s a vicious cycle where I either eat too little because I don’t have the strength to cook / eat according to my WD friendly plan, OR I am simply so tired BUT hungry, that I reach for the Wolt app and order a large burger menu from my bed. And then I feel like I’ve been giving myself a hard time, telling myself that I must have an eating disorder for wanting to eat so restrictively. So basically gaslighting myself 🤦‍♀️

My point is: I actually am so happy to hear that you also are cutting out a lot of stuff (basically the same as me :)) and that helps you aka. maybe I don’t have a crazy restrictive eating disorder, maybe I just have WD 😅

A lot of us in WD find we need to experiment with diet and find a new way to eat that works for our ailing, hardworking organisms. There are many help topics here discussing diet and nutrition, have you looked through any of those? Not because you necessarily need more input (it's highly individual, and it sounds like you're figuring things out for yourself just fine), mainly to know you're not alone. And one never knows what one might learn from another's experience.

Another thing to think about might be that calorie restriction can be very taxing on the nervous system. Maybe something to consider. Personally I've found that staying within an adequate calorie range (as opposed to undereating) has ultimately had a very soothing effect on my body.

Nothing wrong with a burger, by the way!

On 7/28/2024 at 10:26 PM, LouiseL said:

… Also, I have to start at a “forced” stress management course on Tuesday and… I’m a little skeptical about that hehe… I’m gonna learn how to: “handle negative thoughts and difficult emotions, learn constructive stress management skills, let go of worries and focus on what brings meaning to our lives and not let outside things distract us.”

Like…

….. not to be an arrogant b*tch but I feel like us with long lasting antidep withdrawal all have a fricking PHD in all of those areas by now! 😅

LOL, I hear you!! All the honorary degrees for sure.

Hope the mandated stress management course is off to a promising start and not as dull a proposition as one may have feared.

Bon appétit, namasté, and big hugs to you,

Ariel

July 31

On 7/27/2024 at 5:41 AM, LouiseL said:

@Ariel thank you so so much. It’s incredible how sometimes the right messages comes at the right time. 🥲

What I mean is, sadly, I’ve had some worse days again. Burning in my arms/ like, under my skin in general, a loud sort of a hiissss sound in my head / like my head is covered in cotton?, unable to do stuff (and at the same time stressing over feeling like my life is slipping away from me- oh man. Sorry if that was too dark). I’ve also just been ehm, lying in my bed just now, looking at videos of my ex boyfriend and yeah, just missing how life was back when he was alive and we lived together where and we also had our little dog and- yeah. Our normal little life together 🥹😊🥲🩷

…. So getting a message saying I am brave was very much appreciated *happy tears *. Thank you kind kind kind Arial from SurvivingAntidepressants.org 🥹 Thank you for checking in on me. And I’m sorry, in general, for not being all that good at replying.

Actually- I wanted to ask the “community” about something — I genuinely feel like sugar (which I have suddenly been eating a lot of lately, partly attributed to social events; cake, candy, ice cream, soda etc.) worsens my symptoms. Can anyone relate to this? And does anyone know why?

Ok im gonna have to stop writing now because WD symptoms. But thank you! And also I will reply to you @Barry2954 soon :)!

All the best 🩷

louise

On top of what Ariel said it's also worth knowing that the psychiatric drugs alter our microbiomes so eating foods, like sugar, dairy, and so on, can feed the growth of pathogenic bacteria which go on to aggravate our symptoms. https://pubmed.ncbi.nlm.nih.gov/34032649/

August 1

Hi @Ariel and @Barry2954

Firstly, @Ariel— I’m so sorry you’re bedridden for five days! 😔🩷 I think, because of your wonderfully helpful and kind and knowledgeable messages, I just assume that you’re up and about and feeling much better. But I’m so sorry to hear that. 😕 Lots of healing thoughts and digital hugs from Denmark 🇩🇰🩷😊 How are you feeling now?

And @Barry2954, I’ll just read your posts again and actually reply to you. So sorry I haven’t 😓 it hasn’t been intentional. Is it ok I blame it on my WD scatterbrain? 🥴

But yeah, food…

I actually recently spoke to both my WD savvy shrink and my WD-savvy psychotherapist-cousin about food.

They both told me the same thing; that maybe I could benefit from just going with my intuition on food — because… I’ve spent a lot of time trying to research why this and why that food might do this and that to the body. And I don’t think it’s wrong to stand on the shoulders of giants (science 🧐). But their point is that perhaps I need to just listen to my body (and … try… not to care about what other people say. I’m sort of ehm, afraid people will accuse me of being a restrictive eater / have an eating disorder / be too extreme in my relationship to food 😣 So, if I have scientific explanations at hand, that’s easier than saying “because I just feel so much better if I don’t eat this and that.” 🙃)

… I think intuitively I would like to eat like this:

No sugar (right now), no dairy, minimal amount of processed food, only e-numbers from organic food (because, at least in Denmark, those numbers are the totally “safe” ones).

… and then there is gluten… Oh man, that’s my white whale I actually feel like I feel so much better if I don’t eat gluten. Maybe. Argh. But I don’t understand why!

I’ve tried to find scientific evidence (again…) because I don’t want to be …. perceived as a trend-following dumb girl heheh, who takes gluten out of my diet just because it’s trendy. 😅 Again again, with the anxiety about what other people will think, hehe.

Seems there is some scientific evidence that there indisputable IS something called gluten intolerance but they can’t figure out why.

But … yeah.

I think I’m sort of … overly anxious about rejecting … cake / sweets or gluten in social settings, because I don’t want to attract more attention to me like that. I already feel like a bit of an outsider from society with WD and … I guess, being a 35 year old childless “widow” 🥹 …

(… Tbh I have always on/off struggled with feeling like an imposter / outsider, without actually being perceived as one I think? It’s weird! Wonder why I feel like that? 😅 Anyway! …)

@Ariel Can I ask how you manage to be gluten-free? I have tried baking some gluten-free bread, but most of it I really don’t think tastes very good and the store-bought bread seems to be full of e-numbers and crap hehe. I’m curious if you have some concrete recipes. ☺️ I have found a good alternative to pasta with lots of protein. It’s the bread that’s the MEGA-PROBLEM for me

And thank you for the stuff about calories and protein. I will try to be more mindful about protein definitely 😊🩷 And also look into the topics about food on here.

And thank you in general for checking in on me. It actually means so so much. 🩷

Lots of love,

Louise

August 1

On 7/14/2024 at 2:57 AM, Barry2954 said:

I just stopped worrying about appearing sane.

Hi @Barry2954 — hahah 😅 I like this comment. Maybe I should try and do that too. 🥹

On 7/14/2024 at 2:57 AM, Barry2954 said:

The problem after that was that they claimed that I was faking all of my symptoms

… If I had a Danish Krone (Krone is our currency) for every time I’ve encountered someone with WD or just psycho active drug side effects stating that doctors didn’t believe them, told them it was their underlying condition or, in your case, thought they were faking it (!!! 🤬🤬🤬 makes me so angry…),… I’d have many more Kroner on my bank account than I do now 😅😓

I’m so sorry you went through that. Straight up telling you you were faking it? At least my idiot psychiatrist suggested I was clinically delusional, thinking WD could last longer than 3 weeks 😅😒…

It’s interesting with the “BIND” thing. I might look into that. But errgh then I get anxious about looking into that. I do feel my current best course of action is to actually not read too much about my condition because there is a good chance it will kindle my anxiety. But at the same time, it would be nice to understand what’s ACTUALLY going on, especially when I have to tell people about my “condition”.

I usually just go with: “It’s sort of like a long lasting chemical concussion”. 🥴

…. Wait. Your previous psychiatrist urged you to go on a killing spree?! What?! 😨 I’m so sorry to hear about your whole horrific experience with Benzos. 😕 With respect to reading, I do struggle with reading longer things actually. Well actually, in 2022 which was closer to the point where I stopped using psycho active drugs I read a lot all of a sudden. I think it varies for me.

But! While on Escitalopram and Pregabaline I … couldn’t even read one sentence sometimes. My brain and eyes couldn’t focus properly. It was just HORRIBLE. 😰😔

Oh! Interesting! I’ve actually read a whole book about the gut in 2020 (called The Gut 😎) that explained how the microbiome is much more important to our mental health and health in general than previously believed. So I’ll check that out too.

Thanks! I hope I managed to reply to everything this time.

How are you doing these days? Hope you’re better.

Lots of love and healing energy heheh,

Louise

August 1

PS: Just wanted to share this ☺️

I’ve watched Moana twice during my whole WD experience. And this scene always makes me cry, heh… thinking that WD is the lava monster and Moana is those kind people, who UNDERSTAND what we’re going through.

“They have stolen the heart from inside you, but this does not define you. This is not who you are— you know, who you are.” 🥹🌸🌱

(First 2.4 minutes ☺️🩷).

Love,

The Disney Nerd with WD.

August 1

8 minutes ago, LouiseL said:

Hi @Ariel and @Barry2954

Firstly, @Ariel— I’m so sorry you’re bedridden for five days! 😔🩷 I think, because of your wonderfully helpful and kind and knowledgeable messages, I just assume that you’re up and about and feeling much better. But I’m so sorry to hear that. 😕 Lots of healing thoughts and digital hugs from Denmark 🇩🇰🩷😊 How are you feeling now?

And @Barry2954, I’ll just read your posts again and actually reply to you. So sorry I haven’t 😓 it hasn’t been intentional. Is it ok I blame it on my WD scatterbrain? 🥴

But yeah, food…

I actually recently spoke to both my WD savvy shrink and my WD-savvy psychotherapist-cousin about food.

They both told me the same thing; that maybe I could benefit from just going with my intuition on food — because… I’ve spent a lot of time trying to research why this and why that food might do this and that to the body. And I don’t think it’s wrong to stand on the shoulders of giants (science 🧐). But their point is that perhaps I need to just listen to my body (and … try… not to care about what other people say. I’m sort of ehm, afraid people will accuse me of being a restrictive eater / have an eating disorder / be too extreme in my relationship to food 😣 So, if I have scientific explanations at hand, that’s easier than saying “because I just feel so much better if I don’t eat this and that.” 🙃)

… I think intuitively I would like to eat like this:

No sugar (right now), no dairy, minimal amount of processed food, only e-numbers from organic food (because, at least in Denmark, those numbers are the totally “safe” ones).

… and then there is gluten… Oh man, that’s my white whale I actually feel like I feel so much better if I don’t eat gluten. Maybe. Argh. But I don’t understand why!

I’ve tried to find scientific evidence (again…) because I don’t want to be …. perceived as a trend-following dumb girl heheh, who takes gluten out of my diet just because it’s trendy. 😅 Again again, with the anxiety about what other people will think, hehe.

Seems there is some scientific evidence that there indisputable IS something called gluten intolerance but they can’t figure out why.

But … yeah.

I think I’m sort of … overly anxious about rejecting … cake / sweets or gluten in social settings, because I don’t want to attract more attention to me like that. I already feel like a bit of an outsider from society with WD and … I guess, being a 35 year old childless “widow” 🥹 …

(… Tbh I have always on/off struggled with feeling like an imposter / outsider, without actually being perceived as one I think? It’s weird! Wonder why I feel like that? 😅 Anyway! …)

@Ariel Can I ask how you manage to be gluten-free? I have tried baking some gluten-free bread, but most of it I really don’t think tastes very good and the store-bought bread seems to be full of e-numbers and crap hehe. I’m curious if you have some concrete recipes. ☺️ I have found a good alternative to pasta with lots of protein. It’s the bread that’s the MEGA-PROBLEM for me

And thank you for the stuff about calories and protein. I will try to be more mindful about protein definitely 😊🩷 And also look into the topics about food on here.

And thank you in general for checking in on me. It actually means so so much. 🩷

Lots of love,

Louise

Hi Louise,

I understand about the scatterbrain. Even after ten years I struggle with things. You mention the problems with gluten. I gave up eating gluten around two years before the psychiatric treatment otherwise I think it would have been an even worse disaster. Before giving it up I used to have migraines, muscle weakness, lactose intolerance, and other health issues. Giving it up was one of the best things I have ever done. In researching health, after my response to the psychiatric medications, I found out that a dysregulated microbiome, with resulting low bacterial production of butyrate, leads to problems with gluten. https://www.pnas.org/doi/10.1073/pnas.2113655118 Ages ago I had heard that a local naturopath claimed to be able to cure coeliac disease and had dismissed the possibility but now I am fairly certain that it can be reversed, over time, by repairing the microbiome. I have been gradually weeding my diet of foods which raise levels of pathogenic bacteria while raising levels of foods which kill the pathogenic bacteria and feed the healthy bacteria. Precluding use of faecal microbiota transplants, which not only seems distasteful but is also highly risky, the dietary changes seem to be the best way in which to alter the microbiome.

I could go deep into the science but you should also know that bakers yeast, saccharomyces cerevisiae, is inflammatory so bread and pastries can exacerbate our issues.

The foods which I currently eat, in trying to mend my microbiome, are heated and cooled rice and potatoes (which enriches the resistant fibre level in them), self-pickled onions, capsicum, brussel sprouts, chickpeas, and asparagus (using apple cider vinegar). If you don't know, most vinegar is produced from wheat these days so I experience mild gluten problems whenever it enters my diet. I also put a lot of mixed spices, curry powder, and cinnamon on my meals, along with other herbs and spices depending upon my goals at the time. You also want to use plenty of healthy oils like olive oil, coconut oil, rice bran oil, macadamia oil, or pumpkin seed oil, as they help to control levels of pathogenic bacteria. Cloves, oregano, and garlic, also do this though I have discontinued using them for the moment in order to encourage growth of the bacteria which produce butyrate and other short chain fatty acids.

August 1

20 minutes ago, LouiseL said:

Hi @Barry2954 — hahah 😅 I like this comment. Maybe I should try and do that too. 🥹

… If I had a Danish Krone (Krone is our currency) for every time I’ve encountered someone with WD or just psycho active drug side effects stating that doctors didn’t believe them, told them it was their underlying condition or, in your case, thought they were faking it (!!! 🤬🤬🤬 makes me so angry…),… I’d have many more Kroner on my bank account than I do now 😅😓

I’m so sorry you went through that. Straight up telling you you were faking it? At least my idiot psychiatrist suggested I was clinically delusional, thinking WD could last longer than 3 weeks 😅😒…

It’s interesting with the “BIND” thing. I might look into that. But errgh then I get anxious about looking into that. I do feel my current best course of action is to actually not read too much about my condition because there is a good chance it will kindle my anxiety. But at the same time, it would be nice to understand what’s ACTUALLY going on, especially when I have to tell people about my “condition”.

I usually just go with: “It’s sort of like a long lasting chemical concussion”. 🥴

…. Wait. Your previous psychiatrist urged you to go on a killing spree?! What?! 😨 I’m so sorry to hear about your whole horrific experience with Benzos. 😕 With respect to reading, I do struggle with reading longer things actually. Well actually, in 2022 which was closer to the point where I stopped using psycho active drugs I read a lot all of a sudden. I think it varies for me.

But! While on Escitalopram and Pregabaline I … couldn’t even read one sentence sometimes. My brain and eyes couldn’t focus properly. It was just HORRIBLE. 😰😔

Oh! Interesting! I’ve actually read a whole book about the gut in 2020 (called The Gut 😎) that explained how the microbiome is much more important to our mental health and health in general than previously believed. So I’ll check that out too.

Thanks! I hope I managed to reply to everything this time.

How are you doing these days? Hope you’re better.

Lots of love and healing energy heheh,

Louise

The psychiatrist who urged me to go on a killing spree had indirectly caused the death of another patient at the time so, recognising that he couldn't have another huge screw up on his record, was doing everything possible to make me sound completely insane. Of course I was pretty close at the time, with the withdrawal and adrenergic storming peaking, but he and the other psychiatrists couldn't prove it otherwise they might have permanently detained me. As things were I was able to coherently argue that I had the right to refuse further psychiatric treatment and escaped their clutches.

August 5

Hi @LouiseL

How are you going?

On 8/1/2024 at 9:03 AM, LouiseL said:

@Ariel Can I ask how you manage to be gluten-free? I have tried baking some gluten-free bread, but most of it I really don’t think tastes very good and the store-bought bread seems to be full of e-numbers and crap hehe. I’m curious if you have some concrete recipes. ☺️ I have found a good alternative to pasta with lots of protein. It’s the bread that’s the MEGA-PROBLEM for me

To be honest I don't find it difficult to live gluten-free. I eat plenty of meat, vegetables, and fats, and that does it for me. Prior to WD I'd already lived more or less grain-free for many years, so I'm quite used to it. My body just likes it better this way, and I like it when my body gets what it likes. Sometimes I do miss proper good sourdough bread (from a proper, artisanal bakery) (by the way, real sourdough bread I can actually now tolerate in small amounts, yay!), but it's no big deal. I eat enough of what my system prefers that I'm not hungry and don't have a feeling of missing out.

I hope that's not an annoying answer, don't know whether that's at all helpful to you in your situation! The bottom line is a lot of it is a matter of habit, combined with what the individual body/microbiome enjoys. The most important part is that you listen to yourself and heed what your own body is telling you. It sounds to me like you're very in tune with what your body wants, which is awesome. Let go of those hangups about how you're supposed to be/eat and what other people may think or say about you. Only you decide what matters. Who cares what they think about what you eat? Why should that matter at all, it's absurd. Having opinions about what other people eat or don't eat is so strange, we each have enough to do focusing on our own bodies and plates. Only you are in your body, only you know what you're feeling, and only you have to deal with any negative, unwanted consequences of ignoring signals and forcing food on your body that your body rejects. Don't gaslight or judge yourself, Louise. Give yourself so much love and trust yourself. You're doing such a great job, keep taking tender care of yourself.

Recently jon1 and I exchanged about gluten here if it interests you to read. No presh

Sending hugs and healing vibes <3

Ariel

August 22

Hi :)! I actually was going to reply now but when I sat down with my phone to type out a reply just now, I realised my WD brain doesn’t want to do that right now 🤦‍♀️😩😑 But thank you so much for your messages about food!

I feel like I have so many things to share hehe, so I’ll write a longer reply soon. But as always thank you for writing me ☺️❤️

August 29

Hi Gah, I’m so sorry it takes me so long to reply. But once again, I can’t say how much I appreciate these check ins — it’s not for the lack of wanting to reply!😊❤️

So… yeah … I find food difficult 😅🥹. Um…

I’ve had some weeks / over a month now, where there’s suddenly been a lot of stuff happening to my body: Firstly, I’ve gained weight, after years of being almost underweight. Around 4-5 kg, (roughly 11 pounds?) in about a month 😅

I’ve had my body composition checked and at least 1 kg is muscle mass due to being more active, so that’s good I generally need more muscle though, as I’m just under the normal range (courtesy of years of WD).

“Interestingly”, during this weight gain month, I’ve, ahem, been eating a lot more fastfood and sugar and bread, largely because of being out and about again (!!! 🥹🥹🥹☺️) and being more social (and social means, at least in Denmark, cake and bread hehe). But I’ve also been using fastfood apps more and more as a … comfort thing… ahem. 😒 … McDonalds icecream and donuts and muffins delivered to my doorstep 🤦‍♀️

Not surprisingly, during this time of increased sugar and processed foods, I’ve also suddenly had a lot of inflammation in my body… joints that clearly hurt, my asthma and lung disease (I have some scar tissue on my lungs from when I was a baby) have been worse, I’ve had on/off slight fevers, coughing, throat hurting, intense stomach pains AND it has almost felt like I’ve had a kindling of WD symptoms too. Plus more anxious and depressed.

……. So the past week I’ve now discarded sugar again! 😤 I baked some gluten free bread but it actually had the same effect on me as “normal” bread. I kind of think it’s the sticky texture that upsets my body, maybe drains a lot of water that should’ve been used to lubricate my inner workings and prevent inflammation?! These are just my own speculations 😅🤓

… But… Yeah. I have a gut feeling (pun intended..!) that I would just feel better in general WITHOUT bread (except gluten free crackers- less sticky?!).

But …. then I worry if I’m getting enough starch… ? Then my only starch sources would be potatoes, oats and whole grain rice? Or am I overlooking some starch sources maybe? 🤔

Anyway, I’m rambling! ☺️😅

❤️

All the best

Louise

August 29

I wonder whether these kind of eating disorders is common during benzo withdrawal? Because of the physical disability which the benzo's caused in me I had to buy foods which could last for close to a week sitting on the desk in front of me without refrigeration. Sweetened condensed milk and pizza's were my staple foods back then. I gained about forty kilograms over the years of withdrawal, keeping in mind that I was already big (95kg) though with muscle. All of the muscle disappeared over the years of withdrawal and I was just left with fat on me. These days, now the worst of the withdrawal has eased, I'm eating a range of pickled vegetables and spices with a number of other prebiotic foods and healthy oils added to each meal and have dropped around thirty kilo's but with another thirty to go if I want to be lean. Like yourself I used to eat gluten free bread regularly before withdrawal but find that my throat gets mildly inflamed eating it now. I just ignore that when Easter comes; I love the Easter buns too much for my own good, lol.

LouiseL: escitalopram and benzodiazepine withdrawal that keeps on going - help

Recommended Posts

Kathrine

Link to comment

Top Posters In This Topic

Top Posters In This Topic

Popular Posts

LouiseL

LouiseL

LouiseL

LouiseL

Link to comment

Kathrine

Link to comment

LouiseL

Link to comment

Ariel

Link to comment

LouiseL

Link to comment

LouiseL

Link to comment

Barry2954

Link to comment

LouiseL

Link to comment

LouiseL

Link to comment

Barry2954

Link to comment

Barry2954

Link to comment

Barry2954

Link to comment

Ariel

Link to comment

LouiseL

Link to comment

Ariel

Link to comment

LouiseL

Link to comment

Ariel

Link to comment

Barry2954

Link to comment

LouiseL

Link to comment

LouiseL

Link to comment

LouiseL

Link to comment

Barry2954

Link to comment

Barry2954

Link to comment

Ariel

Link to comment

LouiseL

Link to comment

LouiseL

Link to comment

Barry2954

Link to comment

Create an account or sign in to comment

Create an account

Sign in

Browse

Activity

Important Information