Evelyn: My introduction and suffering with Duloxetine

[Evelyne]

Hello!

 

I'm Salla, 33 years old and from Finland. I've used Duloxetine for 12 years or so. At first it was the best thing for my anxiety, but then I upped the dosage to 120mg in 2019 and my problems started. For example, my weight went up and did not want to go down. 

I started to look into defeciences and learned I had had an iron deficiency my whole life. Fixing that made me more stable than Duloxetine ever, and I tapered down to 30mg successfully without problems. 

 

Going under 30mg with general psychiatrist and GP advices. I thought I was doing it right. I went from 30mg to a couple of milligrams in three months. I wasn't aware of the slow tapering or the withdrawal symptoms to look out for. Then the withdrawal slump of anxiety kicked in.

 

When I couldn't handle it, I was suggested to up the dosage in September. In October I ended up to about 10mg. 

The reinstating feels like a horrible mistake now. It started a whole myriad of new problems, my stomach got all messed up and my allergies flared. I understand I'm having a kindling effect. I'm getting kind of desperate with my situation. A psychiatrist insisted I stay at this stage until my body calms down, but it's so hard to even eat enough. A GP (specializing in psychiatry) suggested I stop the med alltogether because of the reinstating symptoms. I don't know what to do. Please, some help?

Edited November 14, 2024 by Emonda
As requested by meber

[Jane318]

Greetings @Salla and Welcome to SA!  We are a community of volunteers providing peer support in the tapering of psychiatric medications and their associated withdrawal syndromes. 

 

I am sorry for all you are suffering right now.  Please know that you will heal / stabilize, although this will take some time.

 

As you have come to realize, your taper from 30 mg to 2 mg over just a few months was too fast and led to the withdrawal symptoms you experienced.  And while it was appropriate to up-dose, the jump back up to 10 mg was much more than we would have advised. 

 

Your options:  1.  You could hold at 10 mg until you stabilize, but we would not recommend this since you are likely experiencing the kindling effect.  And this can take many many months.

- OR - 

2.  Reduce your dose again.  We do not like to jump around, but in your case, since symptoms drastically worsened after increasing to 10 mg, it is prudent to reduce your dosage .  If I were you, I would consider a dose between the lowest dose you were on (2 mg) and where you are now (10 mg).  Perhaps try 4 mg.  If after several days, you experience no relief, try 5 or 6 mg.    It takes about 4 days for a dose change to get to get to full state in the blood and a bit longer for it to register in the brain.  We rarely recommend a stopping suddenly / cold turkey.

 

Once you find the dose that is helping you will need to hold at this dose for a long time.  Then, once you've stabilized on that dosage, which can take several months,  you can begin a 10% per month taper down to zero.   Please read:

About Reinstating and Stabilizing to Reduce Withdrawal Symptoms - at least the first page of the topic.  

How long does it take to stabilize after reinstating or updosing?

Hypersensitivity and kindling

 

I will send some more information shortly.

 

Please keep us updated on what you decide and your progress.  And please keep your signature updated.

 

This is your introductory post - post further questions / updates here. 

 

Do explore the rest of the forum – there is a lot of great information here.  Be sure to read “About SurvivingAntidepressants.org,” which has good information about how to use / search the site: https://www.survivingantidepressants.org/forums/topic/54-about-survivingantidepressantsorg  

 

Also, feel free to read and comment on the intro threads of other members.  This is how you build a community of people who understand what you are dealing with.   It is so helpful to connect with others who are experiencing the same things.

 

I look forward to following your journey, and helping out in any way I can.

 

Best wishes.

Edited November 8, 2024 by Jane318
editorial

[Evelyne]

Thank you so much for your answer @Jane318! It helps so much to be heard and get advice from someone who has been around these things for a long time. I've also been reading around other conversations and those links you send as well.

 

I feel like a failure for listening to advice I've been given about handling this drug. It's a horrible feeling - but how could I have known better? Even the good psychiatrist I went to didn't know about kindling, or at least he didn't think about it when it came to my case. 

 

Should I jump straight to the lower dose or do some kind of tapering? I think that going back down is what I'm going to do, but my mind is still running in panicky circles around this topic. 

 

I'm very ready to hold onto a dosage for a long time after I find the stage I will feel more stable in. 

[Evelyne]

I ended up lowering the dosage today with about 1mg. Feels like the wave of symptoms an hour after taking the medication was considerably smaller.

[Jane318]

15 hours ago, Salla said:

I feel like a failure for listening to advice I've been given about handling this drug. It's a horrible feeling - but how could I have known better? Even the good psychiatrist I went to didn't know about kindling, or at least he didn't think about it when it came to my case. 

Yes, I too have a tendency to beat myself up for listening to the "experts," but we've been programmed to trust the medical establishment.  It does no good to condemn ourselves for this - we can't change the past.  We can only move forward towards eventual deliverance from these powerful, harmful drugs - which you are doing!  Also, many/most doctors have also been programmed. They may be well-meaning, but most are grievously misinformed.  This is why Alto started this site about 20 years ago and it has become a recognized source of factual information about these drugs and how to get off of them.  

[Jane318]

5 hours ago, Salla said:

I ended up lowering the dosage today with about 1mg. Feels like the wave of symptoms an hour after taking the medication was considerably smaller.

Please clarify - did you lower your dose by 1 mg to 9 mg? Please update your signature with date / dose.

 

This is a good sign that symptoms are alleviating already.   You might considering going down another mg or two right away.  Once you are feeling better, then yes, you want to stay at this dose a good long time.  

[Evelyne]

7 hours ago, Jane318 said:

Please clarify - did you lower your dose by 1 mg to 9 mg? Please update your signature with date / dose.

 

This is a good sign that symptoms are alleviating already.   You might considering going down another mg or two right away.  Once you are feeling better, then yes, you want to stay at this dose a good long time.  

 

Yes, exactly, 1mg to about 9mg, I'll update the signature. I'll go down more today.

 

I'll try to keep an close eye to my symptoms, I thought about writing them down with even more detail (I've been keeping diary so far). I also got a phone call to my psychiatrist on Monday. He has been recommended a lot in the Finnish community of withdrawing from antidepressants, so I do trust him, even if this kindling effect might have slipped from him. 

[Jane318]

On 11/7/2024 at 7:13 PM, Jane318 said:

I will send some more information shortly.

FOR WHEN YOU ARE READY TO BEGIN TAPERING 

Here at SA, we recommend the hyperbolic taper method, which you can read about here:  Why taper by 10% of my dosage?

Once you decide to taper and given that you are at a pretty low dose right now, you might consider choosing to taper even more slowly, with longer holds or smaller cuts:

The Brassmonkey Slide Method of Micro-tapering

Taking multiple psych drugs? Which drug to taper first

 Important topics in the Tapering forum and FAQ  

We have some great tools to help you with this at:  https://www.survivingantidepressants.org/forums/topic/9167-how-to-calculate-dosages-and-dilutions-spreadsheets-and-calculators/

 

 

DRUG INTERACTIONS

Are you taking any other medications? If you are taking more than one medication, there may be interactions between them, which your doctor is unaware of, these may be adding to your symptoms. Please put ALL the drugs you take in the drugs.com Drug Interactions Checker at:

Drug Interactions Checker

You may post the results here in your thread.

 

 

WITHDRAWAL

What is withdrawal syndrome.

Brain Remodelling 

Video:  Healing From Antidepressants - Patterns of Recovery

 

As you taper, and even in protracted withdrawal, it is very normal to have periods where you feel better, and periods where you feel terrible.  This is what we call the windows and waves pattern of stabilization.  This is actually a good sign of healing!  Read more about windows and waves here:

 The Windows and Waves Pattern of Stabilization

 

It’s important to keep tabs on your symptoms and adjust your taper amount and schedule as needed.  This will help you identify your windows and waves and reveal your progress, which is encouragement we need!  You can use the following list of typical withdrawal symptoms as a template for a journal, if you wish:

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

You may choose to also track your foods and activities to identify things that trigger symptoms as well.  We do encourage people who are tapering to avoid caffeine, alcohol, and recreational drugs.  Many prescription and OTC drugs can cause problems too and should be avoided as much as possible. 

 

 

AS YOU HEAL

There are a few things you can do to help your nervous system heal.  Most are intuitive.  Eat a balanced, whole foods diet, stay well hydrated, engage in gentle exercise, and get adequate rest/sleep.  Avoid all neurologically active substances, like caffeine, alcohol, nicotine and recreational drugs- these are like pouring gasoline on a fire for your symptoms. Avoid adding any further psychiatric medications to deal with your withdrawal from psych meds- the effects of these meds on a destabilized nervous system is unpredictable, and taking something else could make you worse.

 

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

Magnesium, nature's calcium channel blocker 

Omega-3 fatty acids (fish oil) 

 

So if you decide to try a supplement, even those we recommend here, Add in one at a time and at a low dose in case you do experience problems.  If you tolerate it well, you can increase the dosage slowly over time.  

 

The important thing is to trust your body, that it knows how to heal and never give up!

[Evelyne]

@Jane318 Thank you again from the info and links!

 

I don't drink alcohol (haven't in all the time I've used Duloxetine) nor have I ever smoked. I fight to stay away from other psychological drugs that have been recommended or even prescribed to me. I tried Opamox when the reinstatement anxiety was at it worst, and it calmed my nights, but also brought that much side effects that I didn't use it more than a couple days. 

 

I've been taking a good amount of magnesium supplement (it has five types of magnesium) each day for years now, it's nice to know it can be helpful in this situation.

I take antihistamines, since I have signs of histamine intolerance, but not the old type that is all tiring.

I take probiotics that I've tried to check so that they are not the type that aggravate histamine.

I've used the same multivitamin supplement for years. Also I take Pycnogenol with a low dose, I've noticed it helps with many problems I have currently, some probably being linked to the withdrawal as well. 

I use electrolyte drink about once a day, it has vitamin C and MSM as well. 

 

To calm my stomach (when it got all messed up from the reinstatement), I take Silica gel early in the morning, and in the evening Pepcid, and Gaviscon before sleeping (type of liquid antacid that protects the stomach). I don't know if these products are familiar in other countries.

The stomach issues really hit my eating and diet, but now I try to follow a low histamine diet to see if it would calm the situation down. I have more examinations coming up in December, since my family has different stomach issues diagnosed.

 

All these I've run through drug interactions checkers and done a lot of research about and try to use accordinly. I used more supplements before the reinstatement hit, but it made me more sensitive to things I've been taking, like iron. This bums me out big time, because controlling and healing my long time iron deficiency was the key to get my mental health better. I really hope I'll be able to get the iron supplement back before my iron levels are at the bottom of the ocean again. 

 

I also used L-theanine and L-carnitine, and they seemed to help with the withdrawal (before reinstatement), but now I'm scared of even trying them out. Big sigh.

[Evelyne]

Yesterday we had almost some sunshine and I had a proper window. Like, such normal feelings. It made me tear up, and then do a bunch of stuff I had to do. Eventually the window closed and I was back to feeling dreary and heavy and like a catastrophe is hanging over my head all the time, but! I had that window! 

 

I'm still doing quite fast tapering to counteract the kindling effects. It makes me nervous - how much should I do? How do I know what is a good point to stop and let my situation calm down? 

I do feel the benefits of lowering the dose. Upping the dose made me really over hyper in every way imaginable. Now I'm feeling much more calm - in every way, too. I have some appetite back, but I can't say for sure if my stomach issues are really easing out. The distress is still there. 

 

I try to keep a diary of how I feel and what I eat and so on, but it all feels so very complex. I do have an appointment with a psychiatrist recommended even here coming up on Monday, but he's the same that didn't recognize the kindling effect in me, so I feel unsure about it.

 

I'm on sick leave for now, but I feel this pressure to constantly do things to try to resolve my situation. Maybe it's a very natural reaction, I think. In this world it's so hard to just let it be, when there's always things to do, just in regular days, like food and cleaning and income related issues.

 

I've been reading this forum a lot when I have my hardest moments. Not everything gives me comfort, some things make me scared of how long will this all last, but a lot of things are helpful. 

 

 

[Jane318]

18 hours ago, Salla said:

Yesterday we had almost some sunshine and I had a proper window. Like, such normal feelings. It made me tear up, and then do a bunch of stuff I had to do. Eventually the window closed and I was back to feeling dreary and

heavy and like a catastrophe is hanging over my head all the time, but! I had that window!

@Salla - The window is good news - a sign of healing! 

 

18 hours ago, Salla said:

I'm still doing quite fast tapering to counteract the kindling effects. It makes me nervous - how much should I do? How do I know what is a good point to stop and let my situation calm down? 

I fear that the info on tapering I sent you on Saturday might have confused the issue.  This was for later, after you stabilize and are ready to resume tapering.  For right now, I refer you Option 2 from my my post from last Thursday, regarding reinstatement:

On 11/7/2024 at 7:13 PM, Jane318 said:

2.  Reduce your dose again.  We do not like to jump around, but in your case, since symptoms drastically worsened after increasing to 10 mg, it is prudent to reduce your dosage .  If I were you, I would consider a dose between the lowest dose you were on (2 mg) and where you are now (10 mg).  Perhaps try 4 mg.  If after several days, you experience no relief, try 5 or 6 mg.    It takes about 4 days for a dose change to get to get to full state in the blood and a bit longer for it to register in the brain.  We rarely recommend a stopping suddenly / cold turkey.

 

Once you find the dose that is helping you will need to hold at this dose for a long time.  Then, once you've stabilized on that dosage, which can take several months,  you can begin a 10% per month taper down to zero.   Please read:

About Reinstating and Stabilizing to Reduce Withdrawal Symptoms - at least the first page of the topic.  

How long does it take to stabilize after reinstating or updosing?

Hypersensitivity and kindling

 You reduced by 1 mg to 9 mg and again to around 8 mg (I think).  You can stay here if you feel like things are improving and want to hold further, or you reduce further if you feel you are still in a kindling mode.  You do not do a slow hyperbolic taper here - you are just trying to find a dose that will relieve the kindling effect so you can stabilize.  

 

18 hours ago, Salla said:

I try to keep a diary of how I feel and what I eat and so on, but it all feels so very complex.

Try to keep it simple and don't stress if you miss a day.  You don't want to add more pressure right now!  

 

18 hours ago, Salla said:

I do have an appointment with a psychiatrist recommended even here coming up on Monday, but he's the same that didn't recognize the kindling effect in me, so I feel unsure about it.

Doesn't hurt to listen to what (s)he has to say, but feel free to check in with us about any recommendations.  SA strongly recommends against taking more drugs.  

 

18 hours ago, Salla said:

I'm on sick leave for now, but I feel this pressure to constantly do things to try to resolve my situation. Maybe it's a very natural reaction, I think. In this world it's so hard to just let it be, when there's always things to do, just in regular days, like food and cleaning and income related issues.

Yes, we want to hurry things along, to fix it NOW.  Of course, we want to learn coping strategies, and that certainly takes effort and energy.  But this is a time to prioritize and learn to sometimes let non-essential things go, at least for another day.  I know, easier said than done.  But to the extent that you can, try to accept that this is a season, and temporary, and you must prioritize taking care of yourself, this will get you through plus TIME + PATIENCE.  

 

18 hours ago, Salla said:

I've been reading this forum a lot when I have my hardest moments. Not everything gives me comfort, some things make me scared of how long will this all last, but a lot of things are helpful.

I so identify with getting discouraged at how long this can take!  But everyone is different, your fate is not sealed.  You WILL heal.  And once you stabilize, you can commit to going as slowly as it takes to keep your symptoms manageable.  The time will go by regardless.  As for exploring the site, you have to find that balance between how much is helpful and how much is not.  You do want to do other things that distract you from thinking about withdrawal all the time.

 

Hope this helps - let me know if you have any other questions, and please keep us posted on how you are doing.  Best wishes.

[Evelyne]

15 hours ago, Jane318 said:

The window is good news - a sign of healing! 

 

Yes! I try to remember the good moments when I feel so very sick, but it's odd how hard it is.

 

15 hours ago, Jane318 said:

You reduced by 1 mg to 9 mg and again to around 8 mg (I think).  You can stay here if you feel like things are improving and want to hold further, or you reduce further if you feel you are still in a kindling mode.  You do not do a slow hyperbolic taper here - you are just trying to find a dose that will relieve the kindling effect so you can stabilize.  

 

Thank you for clarifying this more @Jane318! I did reduce a bit more still. I feel better when I take a smaller dose, like on the same day, and the next day is usually somewhay tolerable. For example, I reduced from 60 to 57. The same evening was better, and the next day was more tolerable too. Then I, yesterday, took again 57 beads, and I didn't feel better at all, I felt increasingly bad on the evening and today during the day too. I dropped the dose to 54 beads and about an hour after that I felt so much better again. I wonder if this is a sign that I should keep dropping the dose still? 

 

16 hours ago, Jane318 said:

Doesn't hurt to listen to what (s)he has to say, but feel free to check in with us about any recommendations.  SA strongly recommends against taking more drugs.  

I think so too. He didn't sound like he would be putting me on any other meds, so that's a positive. Instead he suggested that we'd make a good plan for the future about tapering - I know he supports slow taper. He was also very empathetic and wasn't surprised at all when I described my symptoms, and also he almost rolled his eyes out of his head when I told what kind of instructions GPs had given me. 

 

16 hours ago, Jane318 said:

Yes, we want to hurry things along, to fix it NOW.  Of course, we want to learn coping strategies, and that certainly takes effort and energy.  But this is a time to prioritize and learn to sometimes let non-essential things go, at least for another day.  I know, easier said than done.  But to the extent that you can, try to accept that this is a season, and temporary, and you must prioritize taking care of yourself, this will get you through plus TIME + PATIENCE.

You are right, and now that I have a better moment, I definitely see the reasoning behind this. At times I succeed - for example today when I felt very sick, I just got under a weighed blanket and repeated over and over again "I'm healing. This is temporary. This will pass." and got myself somewhat into a calmer mood.

 

16 hours ago, Jane318 said:

so identify with getting discouraged at how long this can take!  But everyone is different, your fate is not sealed.  You WILL heal.  And once you stabilize, you can commit to going as slowly as it takes to keep your symptoms manageable.  The time will go by regardless.  As for exploring the site, you have to find that balance between how much is helpful and how much is not.  You do want to do other things that distract you from thinking about withdrawal all the time.

 

Hope this helps - let me know if you have any other questions, and please keep us posted on how you are doing.  Best wishes.

I try not to make worst case scenarios of some of the harder stories people have here! Truly we are individuals, and I can't just be sure I'll have it as hard as someone else. I also try to find those distracting things as well as I can. Other people help a lot with it.

 

I really hope to find that good stabilizing point. I'm not yet sure how I'll regocnize it, but I try to take day by day. And maybe the psychiatrist will be able to help me with this. 

 

Your messages help a lot, really, thank you so much. I'll keep on writing here about how I'm doing. 

[Jane318]

46 minutes ago, Salla said:

I did reduce a bit more still. I feel better when I take a smaller dose, like on the same day, and the next day is usually somewhay tolerable. For example, I reduced from 60 to 57. The same evening was better, and the next day was more tolerable too. Then I, yesterday, took again 57 beads, and I didn't feel better at all, I felt increasingly bad on the evening and today during the day too. I dropped the dose to 54 beads and about an hour after that I felt so much better again. I wonder if this is a sign that I should keep dropping the dose still? 

From your signature, it appears your lowest dose before reinstating to 6 mg (and then to 10) was 2 mg which was about 14 beads, I think?  And you are currently at 54 beads or about 8 mg?  I would try another drop of 1 or 2 mg if I were you and see how you feel and how long the relief lasts.  

 

52 minutes ago, Salla said:

I think so too. He didn't sound like he would be putting me on any other meds, so that's a positive. Instead he suggested that we'd make a good plan for the future about tapering - I know he supports slow taper. He was also very empathetic and wasn't surprised at all when I described my symptoms, and also he almost rolled his eyes out of his head when I told what kind of instructions GPs had given me. 

You have found a good guy!  So grateful he understands what you are dealing with and is supportive of getting you off completely via a slow taper once you stabilize.

 

53 minutes ago, Salla said:

I really hope to find that good stabilizing point. I'm not yet sure how I'll regocnize it, but I try to take day by day. And maybe the psychiatrist will be able to help me with this. 

Your messages help a lot, really, thank you so much. I'll keep on writing here about how I'm doing. 

I think you will recognize when you are at the right dose to stabilize - the "sweet spot."  Your immediate priority is to relieve the kindling.  Do not fear by dropping by too much - if you feel you have you can always go back up a little bit.  

 

Yes, please keep us posted and reach out with other questions!

[Evelyne]

4 minutes ago, Jane318 said:

From your signature, it appears your lowest dose before reinstating to 6 mg (and then to 10) was 2 mg which was about 14 beads, I think?  And you are currently at 54 beads or about 8 mg?  I would try another drop of 1 or 2 mg if I were you and see how you feel and how long the relief lasts

Yes, you got it right. Kindling started when I upped the dosage to 6mg, I just didn't know that back then, and things of course got worse after rising to 10mg. I think I'll drop at least that 1-2mg and try to follow how I feel the best I can. It's confusing when I have both kindling and withdrawal symptoms, but I do feel like my appetite and stomach are better each time I drop the dosage lower. 

 

9 minutes ago, Jane318 said:

You have found a good guy!  So grateful he understands what you are dealing with and is supportive of getting you off completely via a slow taper once you stabilize

Yes, I feel lucky that I found him in my own city even, for many it's much harder to find anyone who understands these things.

 

11 minutes ago, Jane318 said:

I think you will recognize when you are at the right dose to stabilize - the "sweet spot."  Your immediate priority is to relieve the kindling.  Do not fear by dropping by too much - if you feel you have you can always go back up a little bit

Thanks for the encouragement, it means a lot!

[Evelyne]

@Jane318 Changed my screen name, just so you know too.

 

I've had the worst night for a while. Stomach rumbling, slight nausea, hotness, general feeling of sickness, arms and legs hurting, just broken sleep after about a couple of hours of sleeping properly. I wonder if it is the withdrawal effects creeping up on me after going so fast with trying to cope with the kindling and reducing the dose. After all in the evening I felt much better, but before going to sleep, six or seven hours after taking Duloxetine, I started to feel gradually worse.

These don't feel like the kindling effects either, since with that I woke up suddenly, very agitated and body going on hyper mode. 

Maybe I should try to hold on and not reduce the dose?

 

I also tried to quit taking Pepcid/famotidine for the night since I thought using it for a longer period is not good. I wonder if that might have something to do with these symptoms. With the stomach situation it feels somewhay logical. I also read the thread about PPIs and I wonder if Pepcid has same effects with SNRI even if it isn't as strong and the time it works is much shorter.

 

I also have some menstrual cycle confusion right now, but I understand it's not a wonder with how stressed and messed up my body is currently with the medicine change.

[Evelyne]

Another thing I'm completely clueless about right now is my electrolyte balance. At times I feel like I need so much water and salt, at times it's hard to put those in my mouth. Sometimes I'm unbelievably thirsty early in the morning.

At times I crave so much sweet and sugary things, and then it makes me crash. Apparently these kind of things are very typical in withdrawal, but damn. 

 

I did some gardening today, it was a sunny day at last (the time for daylight is very short in Northern Europe this time of the year and they keep getting shorter still), and it has such a big impact on my mind. I hope I won't have to regret that slight physical activity. My body felt weak and stiff and achy, but hey, that's no wonder considering my sleep has been poor and I've been eating poorly as well. Not to mention my nervous system being all over the place.

I should be using the little daylight lamp but I forgot to bring it with me. I'm at my parents place right now and I feel much more safe and calm here than at my own place in a different city. I do miss my partner, but they really need some alone time without worrying about me constantly. 

 

I also got a call from social welfare office and got an appointment for the next week, so they'll help me to figure out if I could have some kind of extra help in this situation of mine.

[Jane318]

12 hours ago, Evelyne said:

After all in the evening I felt much better, but before going to sleep, six or seven hours after taking Duloxetine, I started to feel gradually worse.

These don't feel like the kindling effects either, since with that I woke up suddenly, very agitated and body going on hyper mode. 

Maybe I should try to hold on and not reduce the dose?

 

@Evelyne - I will reply more fully later, but quick response now to say that it does seem that withdrawal is kicking in big time, so agree it is prudent to hold dose at 54 beads for now. 

[Warpman]

Hi @Evelyne,

 

I read your story and can relate.
 

My problems started when - due to a simple discomfort - the doctor increased the duloxetine from 60 to 90.

 

My anxiety got out of control and instead of trying to reduce the dose to 60 and wait, the doctor decided to switch me to Pristiq.
 

That's when my hell began.

 

I see that you increased the dose of Duloxetine and things started to poop out.
 

Now the challenge is to fight against the deactivation of our SERT and endure the terrible symptoms.

 

Stay strong.

[Jane318]

18 hours ago, Evelyne said:

I've had the worst night for a while. Stomach rumbling, slight nausea, hotness, general feeling of sickness, arms and legs hurting, just broken sleep after about a couple of hours of sleeping properly. I wonder if it is the withdrawal effects creeping up on me after going so fast with trying to cope with the kindling and reducing the dose. After all in the evening I felt much better, but before going to sleep, six or seven hours after taking Duloxetine, I started to feel gradually worse.

These don't feel like the kindling effects either, since with that I woke up suddenly, very agitated and body going on hyper mode. 

Maybe I should try to hold on and not reduce the dose?

As I replied earlier, seems like you want to hold where you are since it does appear that the kindling effects have lessened, but withdrawal has caught up with you.  I am so sorry for this horrible place you are at right now, but please know that this is temporary.  It will take a while - likely months - but you will get through this.

 

Since symptoms are worsening several hours after taking Duloxetine, I recommend you try dividing your dose into two and taking twice per day.  This drug is extended release, but we've seen that at lower doses, even extended release drugs need to be taken twice (or even thrice) per day to keep symptoms somewhat manageable.  Try that and let us know if it helps.

18 hours ago, Evelyne said:

also tried to quit taking Pepcid/famotidine for the night since I thought using it for a longer period is not good. I wonder if that might have something to do with these symptoms. With the stomach situation it feels somewhay logical. I also read the thread about PPIs and I wonder if Pepcid has same effects with SNRI even if it isn't as strong and the time it works is much shorter.

I also have some menstrual cycle confusion right now, but I understand it's not a wonder with how stressed and messed up my body is currently with the medicine change.

I have no personal knowledge of famotidine / PPIs, perhaps others can chime in.  Searching the site, some people report problems with it.  But if you have been taking for some time and become dependent upon it, yes, you might have been dealing with some symptoms related to stopping that.  Hormonal / menstrual cycles can throw another wrench into the works.  It can be challenging (or impossible) to sort out cause and effect when there are so many factors.  But I can tell you are very intuitive and paying attention to your symptoms.  Please continue to do so and know that things WILL improve with time.  You won't feel like this forever.  Right now you have to take care of yourself as best you can, don't change meds / dosages, HOLD / hang tight, and have patience. It will take time, but you will stabilize.

[Jane318]

12 hours ago, Evelyne said:

Another thing I'm completely clueless about right now is my electrolyte balance. At times I feel like I need so much water and salt, at times it's hard to put those in my mouth. Sometimes I'm unbelievably thirsty early in the morning.

At times I crave so much sweet and sugary things, and then it makes me crash. Apparently these kind of things are very typical in withdrawal, but damn. 

I'm a big believer is healthy eating - whole foods, no / minimal processed foods.  I try to avoid / minimize sugar.  Minerals are very important - I use celtic or himalayan sea salt, which have many trace minerals.  Supplements can be problematic in withdrawal.  I know you have already stopped several of the ones you were taking.  You might research some of the others on this site.  You might read this if you haven't already:  https://www.survivingantidepressants.org/forums/topic/606-important-topics-about-tests-supplements-treatments-diet/.   

 

12 hours ago, Evelyne said:

I did some gardening today, it was a sunny day at last (the time for daylight is very short in Northern Europe this time of the year and they keep getting shorter still), and it has such a big impact on my mind. I hope I won't have to regret that slight physical activity. My body felt weak and stiff and achy, but hey, that's no wonder considering my sleep has been poor and I've been eating poorly as well. Not to mention my nervous system being all over the place.

I should be using the little daylight lamp but I forgot to bring it with me. I'm at my parents place right now and I feel much more safe and calm here than at my own place in a different city. I do miss my partner, but they really need some alone time without worrying about me constantly. 

I live pretty north too - 47.6 degrees, so I know a bit about short days in the winter!  It is so important to get outside - fresh air and sunshine - as much as we can.  Hopefully you can get your lamp soon.  I am grateful that you are with your parents and can rest in their love, care, and the calmer atmosphere.  I know it must be a great relief for them as well.  

 

12 hours ago, Evelyne said:

I also got a call from social welfare office and got an appointment for the next week, so they'll help me to figure out if I could have some kind of extra help in this situation of mine.

I truly hope you are able to get some assistance, to help get you through this trial.  

 

Keep us posted.

[Evelyne]

8 hours ago, Warpman said:

 

Hi @Evelyne,

 

I read your story and can relate.
 

My problems started when - due to a simple discomfort - the doctor increased the duloxetine from 60 to 90.

 

My anxiety got out of control and instead of trying to reduce the dose to 60 and wait, the doctor decided to switch me to Pristiq.
 

That's when my hell began.

 

I see that you increased the dose of Duloxetine and things started to poop out.
 

Now the challenge is to fight against the deactivation of our SERT and endure the terrible symptoms.

 

Stay strong.

 

Thank you so much for commenting!

 

I'm sorry for the things you've been through, too, I see you've had even more confusing time with different medications. Feels very disheartening that doctors don't know the risks of raising the dosage - or, well, many more things relating to these meds.

 

I wish all the strength to you and that you will start to feel better soon. I'll follow your progress!

[Evelyne]

5 hours ago, Jane318 said:

s I replied earlier, seems like you want to hold where you are since it does appear that the kindling effects have lessened, but withdrawal has caught up with you.  I am so sorry for this horrible place you are at right now, but please know that this is temporary.  It will take a while - likely months - but you will get through this.

 

Since symptoms are worsening several hours after taking Duloxetine, I recommend you try dividing your dose into two and taking twice per day.  This drug is extended release, but we've seen that at lower doses, even extended release drugs need to be taken twice (or even thrice) per day to keep symptoms somewhat manageable.  Try that and let us know if it helps.

I'll try to hold for some time. It's so confusing since there's still those kindling effects - worsening acid reflux, muscle tightness (especially in my neck and my stomach), increase in anxiety, when I've taken the drug at the same dose as the day before. So these get better when I lower the dose. But now that I didn't lower the dose, I slept a little better. Or that might have been a consiquence? Maybe because of my day being a little more active with the sunlight, too, I slept better. I have to keep following this to know. 

 

I'll talk to the psychiatrist about taking it twice a day to see what they think. I'm somewhat afraid that changing something like this would throw the balance even more out again, if you understand?

5 hours ago, Jane318 said:

have no personal knowledge of famotidine / PPIs, perhaps others can chime in.  Searching the site, some people report problems with it.  But if you have been taking for some time and become dependent upon it, yes, you might have been dealing with some symptoms related to stopping that.  Hormonal / menstrual cycles can throw another wrench into the works.  It can be challenging (or impossible) to sort out cause and effect when there are so many factors.  But I can tell you are very intuitive and paying attention to your symptoms.  Please continue to do so and know that things WILL improve with time.  You won't feel like this forever.  Right now you have to take care of yourself as best you can, don't change meds / dosages, HOLD / hang tight, and have patience. It will take time, but you will stabilize.

Thank you for the encouragement again, I really need it. Things really are so complicated with all these different factors! I wish I can go on without the famotidine, but I got to take it one day and step at a time. 

[Evelyne]

4 hours ago, Jane318 said:

I'm a big believer is healthy eating - whole foods, no / minimal processed foods.  I try to avoid / minimize sugar.  Minerals are very important - I use celtic or himalayan sea salt, which have many trace minerals.  Supplements can be problematic in withdrawal.  I know you have already stopped several of the ones you were taking.  You might research some of the others on this site.  You might read this if you haven't already:  https://www.survivingantidepressants.org/forums/topic/606-important-topics-about-tests-supplements-treatments-diet/. 

I've now been trying out low histamine diet, I hope it will help! Or it seems it has helped already a little. It is much about whole and fresh foods with little processed food or sugar. I do use mineralized salt, maybe I'll try to increase that and my water intake as well.

I read the supplement topics, another complicated thing! I feel like now that I've been doing all the changes to my medicine dose and diet, it's hard to make changes to my supplements so that I would know what affects what. Due to other issues I've had I've been taking these supplements for a long time, so throwing them away feels scary too. I did change my magnesium to a simpler one though, but I don't know if that has done any good or bad. 

5 hours ago, Jane318 said:

I live pretty north too - 47.6 degrees, so I know a bit about short days in the winter!  It is so important to get outside - fresh air and sunshine - as much as we can.  Hopefully you can get your lamp soon.  I am grateful that you are with your parents and can rest in their love, care, and the calmer atmosphere.  I know it must be a great relief for them as well.  

The effect of the daylight is pretty big, I'm glad you understand! Some days visiting outside really seems to be the only thing that keeps me sane. I'll get the lamp in a couple of days when I go back to the city (which I don't look forward to, it has been easier to cope here in the countryside). 

My parents really help me a lot. They make sure I take care of the basics at least - eating something, drinking, moving a little, focusing on something else too than the withdrawal/kindling all the time. And comfort me when I feel really bad. Simple things, but actually so impactful. 

5 hours ago, Jane318 said:

I truly hope you are able to get some assistance, to help get you through this trial.  

 

Keep us posted.

I hope so too, the person who called me was very empathetic at least. 

 

It feels good to write down things here, so I'll keep doing it frequently. 

[Jane318]

Thank you for the update, keep us posted.  Thinking of you.

[Jane318]

17 hours ago, Evelyne said:

I'll talk to the psychiatrist about taking it twice a day to see what they think. I'm somewhat afraid that changing something like this would throw the balance even more out again, if you understand?

Of course!  

[Evelyne]

7 hours ago, Jane318 said:

Thank you for the update, keep us posted.  Thinking of you.

You really make such a difference, I hope you know that!

 

Yesterday I had mostly physical symptoms, mental ones were much more lighter and I had some actually nice moments even with the physical stuff. Like I had a very nasty tension headache. And my arms and legs and hands are hurting (though the restlessness of them has alleviated with lowering the dose).

 

Still kept the Duloxetine dose at 54 beads.

 

I might have eaten something that didn't sit with me though, stomach was bothering me through the night. Or it might have something to do with the fact I tried to swap Gaviscon to another dose of Silicol gel, maybe. So hard to know! 

My stomach seems to be the most calm during the time of the day when there's most time passed from taking Duloxetine, and these issues started when the kindling happened. 

 

I've been trying to follow which symptoms seem to come from taking the drug as side effects and which might be more due to withdrawal.

 

Kindling / side effects: a wide variety of stomach issues, tension all over the body (leading to pain and headaches), restlessness, agitation, near akathisia, spikes in nausea and loss of appetite, maybe eating issues leading to variations in blood sugar and blood pressure, thirst and confusion with electrolyte balance, heart symptoms ramping up, mornings being horrible, cortisol spikes, adrenal rushes (many of these have somewhat eased out with lowering the dose)

 

Withdrawal / change of the dose lower: feeling generally sick, those flu-like symptoms, exhaustion, rumination, at times being very teary and crying easily, memory flashbacks, metabolism working faster (also affecting then to blood sugar and pressure, thirst and electrolyte balance) losing weight (started before eating/stomach issues), generally being more sensitive to stimulation, sweating / hot flushes, hormonal imbalance

 

Histamine issues / hypersensitivity actually raised their ugly head before kindling, yet I could manage them, but kindling made them much more difficult! 

 

To see the silver lining:

Withdrawing has made me want go be with people again after twelve years of thinking I don't really like or enjoy being with anyone. I've been yearning to be close with my partner again, both physically and mentally. I've had sparks of interest in things I haven't found interesting in a looooong time, like drawing and making food. I'm also more spontaneous and able to do things more bravely, just to get over with stuff (on the moments I'm not really frozen with exhaustion or rumination or something). I appreciate good little things, like seeing animals or nice weather, much more. I've connected with so many people. I also feel like my mind and body are trying to deal with minor trauma and memories from my childhood and youth when I didn't take this drug - which I think is a good thing, even if it takes a lot. I also have found a lot more joy in not using social media and trying to focus on more 'slow life'.

 

One moment at a time. 

[Evelyne]

Feeling a lot of dread, hopelessness and fear today. Maybe it's because I need to go back to the city tomorrow to deal with appointments and I just feel way too tired and messed up to do any of those. Trying to figure out timetables, what I might be able to eat and when, all feels like too much. I just want to cry and scream from frustration. Even visiting a supermarket was awful, because there's so little things I can actually eat right now without bad consequences. At times I fear eating because I never know what it will do to me. The thought of "I don't want to live like this" feels overpowering. The fear of what might happen is pressing me down. 

 

And now I feel very sorry for writing such dreary things here. 

 

Today I was also blaming myself a lot for not searching enough information online before making all the changes with my medication this year. I know, I know, it doesn't help at all, it doesn't change what has happened, but it's still there.

 

Just... Just a lot of fear today.

[Jane318]

All you are experiencing is withdrawal, it is not you.  Fear is a normal response.  Encourage you to choose to have courage in the face of fear.

[Evelyne]

7 hours ago, Jane318 said:

All you are experiencing is withdrawal, it is not you.  Fear is a normal response.  Encourage you to choose to have courage in the face of fear.

Thank you. I'll try to keep this thought in mind. It's such a constant battle.

 

I took back my magnesium supplement with five types of magnesium in the evening. It feels like it makes me sleep better and have less problems with muscle aches, but also gives me gas, haha. I hope the stomach will learn to handle it so I'll have that little help for sleep. Taking only magnesium citrate gave me more prolems but I read it might be problematic version for the histamine situation. 

 

Yesterday I cried a lot. My mom comforted me through it all, such a warrior she is, with her own health problems there, too.

I had a better moment in the evening, so I stayed up for some time to finish a book - that's something positive as well, for a long time I didn't have interest in reading, but now some days it seems to creep back. 

 

I think I'll be in my own apartment in the city for six days. Tomorrow is the psychiatrist appointment and I feel anxious. Will I be able to ask and explain everything that is needed? Will I get the help I need now? I'll try to make good notes. 

 

Also I have a call coming up with a GP who took a lot of interest in my situation. He gave some medicine advice that wasn't too smart, but he didn't force that on me, and was really interested about my history and overall wellbeing and supported me wanting free from psychological drugs. I wonder if I should ask some blood testing from him, or is it dumb while my body is this messed up. I'd also want a pharmacogenetic testing done through public healthcare, but that probably requires fighting over it, since it's more expensive. 

[Evelyne]

Question: how can I make my signature font smaller? 

 

[Jane318]

8 hours ago, Evelyne said:

Question: how can I make my signature font smaller? 

 

Click on your screen name (Upper right corner), Click on Account Settings, click on Signature.  This will open box for you to edit your Signature.  Select the text.  You will see a tool bar at the top - click on arrow next to "Size."

[Evelyne]

Today: terrified of food. It feels like I can't eat anything, everything makes me allergic. It's horrifying, and I know I have to eat, but I'm scared I will get more and more allergy symptoms. I've tried low histamine, but I'm afraid it's more than that, like oxalate, and salicylates, and then what is left? Almost nothing. I can't live on nothing. I'm so scared.

 

I visited the psychiatrist today. He was so understanding of my problems. He suggested I don't do any more changes to my Duloxetine right now (keeping it in 54 beads) to let the situation settle. 

I hope it means also this horrible allergic-to-everything-feeling settles with it. It has to. 

I also told about my financial situation struggles and he gave me a hefty discount. Such a good guy. I have a call with him in three weeks, and he said it doesn't cost anything. 

 

If there weren't this constant fear of eating and worry of food, I think I'd feel pretty good right now. 

[LostInCanada]

On 11/14/2024 at 6:00 PM, Jane318 said:

famotidine / PPIs

I have found that taking approximately 75 mg of DGL majorly helps with GERD/reflux/nausea. I use Natural Factors chewable DGL tablets (400 mg) and break them into 4 pieces. Ginger is also helpful for nausea. 

 

https://search.app?link=https%3A%2F%2Fwww.healthline.com%2Fhealth%2Fdigestive-health%2Fdgl-for-acid-reflux&utm_campaign=aga&utm_source=agsadl2%2Csh%2Fx%2Fgs%2Fm2%2F4

 

 

[LostInCanada]

I noticed this from you on another member's intro. Please add all drugs and supplements to your drug signature.

From you:

"I've been taking two antihistamines per day (desloratadine) and a small-ish amount of Pycnogenol every day. I wonder if I should take Pepcid back even if that has it's downsides as well. "

 

Taking antihistamines regularly is not recommended. Your body is trying to reach homeostasis as you taper. Adding this drug slows your body's ability to figure out how to do this on it's own. Some on here have had to slowly taper to get off the antihistamines they are using.

[Evelyne]

1 hour ago, LostInCanada said:

I noticed this from you on another member's intro. Please add all drugs and supplements to your drug signature.

From you:

"I've been taking two antihistamines per day (desloratadine) and a small-ish amount of Pycnogenol every day. I wonder if I should take Pepcid back even if that has it's downsides as well. "

 

Taking antihistamines regularly is not recommended. Your body is trying to reach homeostasis as you taper. Adding this drug slows your body's ability to figure out how to do this on it's own. Some on here have had to slowly taper to get off the antihistamines they are using.

I'll add them later today!

 

I know now it's not recommended, but I've been using them for quite some time with this dose, as my doctor adviced, to deal with allergies. I'm worried to come off them in the middle of trying to deal with Duloxetine withdrawal. But I try to deal without Pepcid since it's an H2 blocker, maybe cutting it off aggravated some of these histamine symptoms too.

 

1 hour ago, LostInCanada said:

have found that taking approximately 75 mg of DGL majorly helps with GERD/reflux/nausea. I use Natural Factors chewable DGL tablets (400 mg) and break them into 4 pieces. Ginger is also helpful for nausea. 

 

https://search.app?link=https%3A%2F%2Fwww.healthline.com%2Fhealth%2Fdigestive-health%2Fdgl-for-acid-reflux&utm_campaign=aga&utm_source=agsadl2%2Csh%2Fx%2Fgs%2Fm2%2F4

 

I might try ginger, though it has felt too strong for my stomach. We don't really have DGL available in Finland, but I could do some research. With bringing down the Duloxetine dose and eating low histamine food the acud reflux has been more tolerable, though I take 10ml of Gaviscon in the evening and same amount of Silicol gel in the morning (will add these to the signature too).

[Evelyne]

Anyone else feeling like being in a god damn rollercoaster with withdrawal?

From highs to such lows and back again. Hope, despair, slight glimmer of joy, sadness, laughter, crying, body feeling over hyper, body feeling down in the dumps... My goodness, isn't it something? And all we can do is to hold on.

 

I feel some kind of weird sense of security and calm right now, even if my body is a bit jittery, and the morning restlessness was quite strong today (more physically than mentally). This feels so peculiar. It might have to do with my cycle, I think I'm now in the place where I have the most estrogen and progesterone - but hey, any good moment, I'm happy to take it.

 

Things I get happiness and feelings of content from right now:
- My partner, my family and friends
- Reading (light things, not heavy or stressful)
- Slow British murder mysteries (like Midsomer Murders and Miss Marple)
- A warm cup of Rooibos tea (I don't think it flares me)
- The moments when sun shows it's face (not going to be a thing for some days, we are going to have first snow soon)
- Fresh air
- Being able to move my body in a way it asks - sometimes it's a moment of random dancing, sometimes a walk or a stretch or a short sequence of yoga
- Being spontaneous (last night I went to a second hand shop down the street with my partner with a very short notice)
- Realizing how much I've done to help my situation and how I've met people who truly want to help
- Realizing I do have several safe spaces, like my apartment and my parents' place
- Realizing that low histamine diet has already made me feel better, even if I struggle to identify exactly what fits me right now
- I think things like drawing, crafts, puzzles, but not with any pressure to achieve something in a specific timeframe
- Giving myself permission to be on sick leave and be in a healing process
- The Puhdistamo electrolyte powder seems to do me good - it has all the electrolytes, mineral salt plus vitamin C (in a calcium ascorbate form) and MSM, very little additives and stevia as a sweetener.

I've been trying to write down the good things from my days, or at least think about them or tell them out loud when I experience them. It helps with keeping the hope going.