DaveB: trying to stop a roller coaster year

[Happy2Heal]

1 hour ago, DaveB said:

Hey guys, do you really think I will stabilize given time doing what I am currently doing and that I can get back to normal? My wife thinks I just need to quit taking everything, “why would you keep taking something that doesn’t make you  better?” She thinks I should just quit taking meds and “see what’s you, and what is side effects.”

 

I think you may have answered this already but is there any way to get your wife to read about withdrawal, read the stories here or something so she understands what this is like?
These are drugs that change our BRAINS, those changes don't happen overnight and un doing them isn't going to happen overnight either.

but I guess it's a hard thing for ppl to understand if they haven't had the experience with them.

*sigh*

It's gotta be so hard for you, having your wife doubt what are going thru and how you need to do it, to keep the symptoms under control.

I don't envy you at all, Dave.

 

stay strong, you're gonna get thru this

[Tom37]

Mate,

 

You quit now and I hope your wife is ready for the outcome because it more than likely will not be at all pretty. 

 

Your wife is the issue here not what your currently doing. That might sound harsh but you need to do what’s right for you.

[DaveB]

Well she gave me an ultimatum, quit the Paxil or she is done with me. I guess I will be taking the plunge, can’t ruin my family. Hopefully I can make it work and cope while my brain figures it out. I don’t think I have any other choice at this point. To her credit, the Paxil has never helped at all in the year and change I have taken it, so why continue.

[shawny]

@Happy2Heal I have messaged u can u please reply back 

[eymen23]

Dave,

 

If I was you and you’re keen to keep the marriage working, I’d keep taking the Paxil dose you’re taking now and pretend you’ve stopped it.

 

I’ve stopped sharing the specifics of this journey with my family and it’s saved a lot of arguments and headaches. 

 

Also, I’m doubtful she’s serious about ending it all over this episode with Paxil. It sounds like quite an empty threat, unless it’s something that’s built up for many months and years? This process can be very draining for our families and sometimes out of stress (and indeed their own despair) they can be outright unkind. 

[RachelSusan]

Dave,

If you were a diabetic and your wife said quit taking your insulin or she was going to leave you, would you? Keep your pills at work my friend.  I'm am so sorry you are going through this.  Regardless of your decision we are here for you.

Warm wishes as always,

RS

[ChessieCat]

22 minutes ago, eymen23 said:

I’d keep taking the Paxil dose you’re taking now and pretend you’ve stopped it.

 

I'm not sure that lying about it is good in a marriage.  Antidepressant Withdrawal Syndrome is in the DSM-5:

 

 

Going cold turkey now could make things much worse.  We have members here that have lost their job, become bedridden and/or had to move in with relatives because things have become unbearable.

 

 

CT and Fast Tapers

 

The other thing is, if you cold turkey and things go south, reinstatement may not work and/or you could end up on more drugs.

 

From Post #1 of About reinstating and stabilizing to reduce withdrawal symptoms

 

And the large red lettering is by Altostrata, not me.

 

On 10/9/2012 at 10:17 AM, Altostrata said:

Don't suddenly go off medication assuming that reinstatement is a safety net. This is one of the reasons we advocate gradual tapering to minimize withdrawal symptoms. Once the nervous system is destabilized by withdrawal, all bets are off. Humpty Dumpty has fallen off the wall.  (Humpty Dumpty is a character in a children's nursery rhyme - he is an egg.)

 

Reinstatement does not always work, and you may have to live with severe withdrawal syndrome for a long while. Medicine wants to believe the acute phase of withdrawal lasts only a few weeks. From what people have posted on the Web, it can last many months.

 

[eymen23]

3 minutes ago, ChessieCat said:

 

I'm not sure that lying about it is good in a marriage. 

 

I think we will probably agree to disagree here, but sometimes concealing the truth can be more beneficial for all parties involved.

 

I think being economical with the truth is much better than a cold turkey off the back of several very large cuts in 2018, or indeed breaking up.

 

Just my suggestion. 

[ChessieCat]

6 minutes ago, eymen23 said:

 

I think we will probably agree to disagree here, but sometimes concealing the truth can be more beneficial for all parties involved.

 

I think being economical with the truth is much better than a cold turkey off the back of several very large cuts in 2018, or indeed breaking up.

 

Just my suggestion. 

 

I think other avenues should be tried first.

 

The thing with lying is if the truth is discovered it then puts doubt in the other person's mind about what else that person may have lied about.  It is very difficult to renew trust once it has been broken.  And it puts a lot of stress on the liar trying to prove themselves that they have only lied about that one thing, assuming that is the only lie.

 

There are ways around it, as long as things are worded carefully.

[eymen23]

@ChessieCat 

 

I definitely agree with you on the above. I don’t condone lying in ordinary circumstance. I guess I’m seeing it from the perspective of:

 

lying > cold turkey 

 

Sorry to hijack Dave. I hope you find a solution that works for both you and your family. 

[Altostrata]

DaveB, you need to get your relationship with your wife straightened out.

 

If I were you, I would not discuss every bump in the road of tapering with family members, making it the center of your relationship. You cannot blame them for getting tired of it.

 

You and your wife might go to a marriage counselor instead.

 

If you quit Paxil cold-turkey now, after all the time we've spent with you discussing tapering and withdrawal symptoms, you will be deliberating taking a huge risk, which you've failed before. We're not going to keep picking up Humpty Dumpty. In many cases, there's nothing we can do about a severe withdrawal reaction other than suggest reinstatement, which doesn't always work.

 

Good luck.

[JackieDecides]

18 hours ago, DaveB said:

Well she gave me an ultimatum, quit the Paxil or she is done with me. I guess I will be taking the plunge, can’t ruin my family. Hopefully I can make it work and cope while my brain figures it out. I don’t think I have any other choice at this point. To her credit, the Paxil has never helped at all in the year and change I have taken it, so why continue.

 

oh, boy, this is scary.

 

DaveB you are, literally, not thinking straight and your wife sounds poorly informed.

 

please, please read and re-read what Altostrata and ChessieCat have said.

 

  and good luck, it's going to be hard no matter what. but cold turkey sounds like a really bad idea for everyone, your wife just doesn't understand that. please keep us updated, I am afraid for you.

 

🤗  < internet hugs 

[Rosetta]

Well, Dave, all I can say is that you will not save your marriage by quitting Paxil.  It's terrible that your wife isn't aware of that, but if she is threatening to leave you now, I think you will have very little hope of avoiding that outcome after quitting Paxil.  

 

I'm worried you will lose your job and ability to support your kids, too.  I'm not sure how your wife plans to support herself if she separates from you, but I think you should keep taking Paxil and see what happens.  Even if she does separate from you at least you will be able to keep working.  You won't lose everything if you can keep paying for what your kids need.

 

You know I CT'd essentially.  It was a very, very fast taper.  I had to stop working.  In fact, I couldn't be alone for several months.  It was very risky for me to be alone because of SI plus I was so terrified that I didn't want to be alone.  There was a period of time when I couldn't sleep unless my husband was with me AND stayed awake to "protect me" from whatever terrifying thing I thought was going to hurt me or kill me.  

 

You have seen what dropping your dose did to you.  I've never heard you complain about DP, DR or SI.  I've always assumed you had none of those.  I'm pretty worried that you will if you quit Paxil.  You should seriously consider what might happen if you get into a situation like mine.  I still can't work.  It's hard to imagine that I will ever be able to again, but being absent from the workforce means getting a job now would be very difficult.  So, I feel that you need to think about the long term impact of what might happen.  

 

I say this with the best of intentions: I get the sense that you aren't able to think clearly about how much worse WD could get.  That's normal, I believe.  It's very hard to imagine worse!!  I know that to you it seems worse than you could ever imagine, but can you think of symptoms you haven't had?  Most of your physical symptoms haven't come back, right?  Are you dealing with SI at this point?  Maybe you could read about some possible symptoms others have had after a CT.  Check out the CT threads before you decide?

 

I am so very, very sorry that your wife is saying you have to CT.  That is truly awful.  She doesn't realize what she's saying or doing.  You have to protect both you and her and your kids from her lack of information, Dave.  You are the only one who can.

 

Rosetta

[ChessieCat]

Voice-of-the-Patient-Petition-Analysis-Report.pdf 

 

Patient Analysis with patient journey maps as researched and written by Dr Anne Guy, Scottish petitioner Marion Brown and Welsh petitioner Stevie Lewis.  This document provides a compelling picture of patient experience.

 

PE01651: Prescribed drug dependence and withdrawal

 

Calling on the Scottish Parliament to urge the Scottish Government to take action to appropriately recognise and effectively support individuals affected and harmed by prescribed drug dependence and withdrawal.

 

This Scottish petition received submissions from around the world.  There are almost 300 submissions which have been made available to the public.  I have read about 50 of them.  They are concise case studies from both sufferers and medical professionals, maximum of 3 sides of A4.

 

 

Direct link to public submissions:  http://www.parliament.scot/GettingInvolved/Petitions/PE01651

 

SA's Scottish Petition topic link

[DaveB]

Thank you all for your support/advice/common sense. I won’t be doing a CT, I talked to my wife and I think she understands what a bad decision that would be at this point. My plan is to hold until June-July keeping everything exactly the same, and see where that puts me.

 

Sorry I was so slow to respond to all of you, I had a busy day skiing with my kids and then dinner and games with friends. I am overwhelmed by the outpouring of care/concern and advice. I really appreciate it all and all of you for being here for me!  

[DaveB]

A REALLY tough day again today! I felt really good from about 11AM - 1PM, but then I have been dealing with intense anxiety ever sense. Have I permanently broken my nervous system with all the changes I have made? Eventually anxiety like this can’t keep it up, I mean won’t my body eventually give up on creating all the cortisol? I am feeling hopeless again. These waves are just unbearable!

[SkyStreamer]

Hi @DaveB. Sorry to hear you had a rough day. Those are never fun. I go in and out of them a lot myself. 

 

If you haven't already, or even if you have in the past, I'd try to listen to this YouTube talk by Claire Weekes: https://bit.ly/2G4d44b. It's a very encouraging one, especially when you're wondering if you'll every progress or see any light along this tough journey. I've been listening to this talk for the last week, and it has helped me tremendously. I'll definitely be revisiting if from time to time.

 

I'm rooting for you!

 

 

 

 

 

[Tom37]

Unfortunately it’s the nature of this beast.

 

All those changes do add up so you need to hold on for a good while yet.

 

I was originally hoping 3 or 4 months for myself to stabilise properly but I’m now thinking 12 months or longer as just can’t see it happening quicker with how slow and frustrating it has been so far.

[DaveB]

@ChessieCat @Altostrata

 

8AM - take 10mgs Paxil

 

8:30AM - wake to moderate anxiety, take multivitamins, fish oil, magnesium, vitamin D. 

 

8:30 - 11AM - pretty strong anxiety, not doing well. 

 

11AM - 1PM - anxiety almost shuts off completely, feeling so much better. 

 

1PM - 3PM - anxiety building, Getting pretty bad.

 

3PM - 9PM - Anxiety really bad, pretty much unbearable. Tried to watch Australian Open final and movie with my kids, felt awful!

 

9  - 11PM - Feeling better, But anxiety still hanging around.

 

11PM - 2.5mgs Zyprexa and bed.

 

Another really tough day, doubting recovery. Not sure what to do to be honest. Feels like at times I just get worse and worse.

[Gridley]

What to do is to hold.  

 

I'm glad you decided not to CT.

[JackieDecides]

2 hours ago, DaveB said:

Feels like at times I just get worse and worse.

 whatever you are feeling, good or bad, is always temporary. you can't trust it to be "truth" - so in this case, that's a good thing! 

 

I'm glad you are not going CT, too. people here have lots of experience and they know. I took years and years getting off lexapro, not because I had the wise help from here but out of fear from when I tried to do it any other way, it felt horrible.

 

don't know why, but it looks like you weren't able to flag the mods so I will - they have a box around their screen names if it worked.

 

@Altostrata @ChessieCat

[powerback]

On 1/24/2019 at 5:02 PM, DaveB said:

@ChessieCat @Altostrata

 

7:30AM - 8:30 AM - finally up after a terrible night. Anxiety surprisingly quite mild. take multivitamins, fish oil, magnesium, vitamin d. Moderate to strong anxiety.

 

8:30 - 11AM - don’t have client meeting til the afternoon so try to lay down to get some sleep after bad night. Broken sleep, HIGH Anxiety.

 

11AM - Take Paxil 10MGs, Monster Energy drink, feeling much better

 

11AM - 1PM - Feeling much better, not normal, but manageable.

 

1PM - 3PM - anxiety building a little, still at manageable levels.

 

3PM - 5:45 - Anxiety ranging from mild to moderate, manageable.

 

5:45 - Moderate exercise

 

5:45 - 11PM - Feeling good, low anxiety if any.

 

11PM - 2.5mgs Zyprexa and bed. 

 

Night I really felt great, finished the movie, and enjoyed the evening. Slept totally fine unlike the night before. Woke to pretty strong anxiety at 6:45 that became really strong by 8AM. Now 10AM and the anxiety has subsided, thank goodness cause it was really bad.

 

Overall yesterday wasn’t bad, I posted at my worst and I apologize for that, I probably need to make a rule not to post when feeling my worst. I just can’t talk to my wife about it, so this forum ends up being my sounding board and I am sorry for that.

You are correct about not saying it to your wife dave ,its much better to offload

On your thread,im in a good place now with never saying anything to the levels I used to ,god love my missus ,she heard every raw word ,thanfuly we both know this is my journey to make .

If your not posting at your worst then maybe get a journal and offload into that.make sure you dont offload it on to your wife .

Keep at it mate ,we simply have no other choice.

✊

[Altostrata]

11 hours ago, DaveB said:

@ChessieCat @Altostrata

 

8AM - take 10mgs Paxil

 

8:30AM - wake to moderate anxiety, take multivitamins, fish oil, magnesium, vitamin D. 

 

8:30 - 11AM - pretty strong anxiety, not doing well. 

 

11AM - 1PM - anxiety almost shuts off completely, feeling so much better. 

 

1PM - 3PM - anxiety building, Getting pretty bad.

 

3PM - 9PM - Anxiety really bad, pretty much unbearable. Tried to watch Australian Open final and movie with my kids, felt awful!

 

9  - 11PM - Feeling better, But anxiety still hanging around.

 

11PM - 2.5mgs Zyprexa and bed.

 

Another really tough day, doubting recovery. Not sure what to do to be honest. Feels like at times I just get worse and worse.

 

Did you go back to bed after taking 10mg Paxil at 8 a.m.?

 

Has your sleep pattern changed since you moved Paxil?

 

The symptoms 8:30-11 a.m. suggest an adverse reaction to something you took at 8:30.

 

Did we not discuss stopping multivitamins and vitamin D?

[DaveB]

28 minutes ago, Altostrata said:

 

Did you go back to bed after taking 10mg Paxil at 8 a.m.?

 

Has your sleep pattern changed since you moved Paxil?

 

The symptoms 8:30-11 a.m. suggest an adverse reaction to something you took at 8:30.

 

Did we not discuss stopping multivitamins and vitamin D?

 

Yes, went back to sleep. Haven’t noticed any real difference in sleep pattern since changing the Paxil. 

 

We discussed it, but we also thought I may need more B vitamins because the Monster Drinks always help for a few hours. We decided not to change it as I was already changing things (moving Paxil, stopping ashwagandha).

[DaveB]

@Altostrata @ChessieCat

 

6:30AM - wake to moderate anxiety. 

 

7: 30AM - take 10 mgs Paxil, take multivitamins, fish oil, magnesium, vitamin D. 

 

7:30 - 9:30 - meetings cancelled, try to sleep in car, anxiety mild to moderate. Was able to get some sleep.

 

10AM - loose stool, noticed I still have twitching in left eyebrow, been almost a month, hoping it isn’t TD from Zyprexa (is this how TD would even manifest?)

 

10AM - 7:30PM - Anxiety in waves from mild to moderate, not fun but not unbearable. I can manage this. Maybe decreasing in strength as we get closer to night.

 

7:30 - mild/moderate exercise

 

7:30 - 10PM - feeling good, little to no anxiety, almost normal. 

 

10PM - 2.5mgs Zyprexa and bed early due to a presentation I have to give at 7:30AM the next day.

 

If this was my normal days I could at least handle life, anxiety not out of control and at least manageable. The fact that these are my “good” days leave a lot to be desired.

[DaveB]

Pretty tough morning so far, feels like it may just be a “grind it out” kind of day!

[Rosetta]

On January 25, 2019 at 2:06 PM, DaveB said:

Hey guys, do you really think I will stabilize given time doing what I am currently doing and that I can get back to normal? My wife thinks I just need to quit taking everything, “why would you keep taking something that doesn’t make you  better?” She thinks I should just quit taking meds and “see what’s you, and what is side effects.”

 

I'm curious, Dave.  When you say this are you sort of venting?  Such as saying: Isn't it ridiculous that I have to take something that doesn't appear to make anything better?  Isn't it absurd that there is such a drug being prescribed that can create a situation in which I have to take it or I will get worse, but getting better is a very long, slow process?!!  It is absurd.  It is absolutely preposterous.  

 

The fact that taking the drug doesn't fix the symptoms immediately goes against everything we lay people think we know about drug dependency.   I never thought about what happened to people who quit drugs or alcohol.  I always assumed they got better rather quickly, but that's not true at all.  I certainly never dreamed that quitting or reducing the dose could damage the operation  of the autonomic nervous system nor that it could be a long lasting condition despite the person returning to the drug.  What is happening to us happens to alcoholics all the time!!  It's well known amongst doctors.  The same is true for benzos and opioids.  I really "can't believe" this happened to me because I took a drug prescribed by a doctor for emotional issues.  How truly shocking.

 

I'm wondering what you believe?  Do you have moments when you are sure you are doing the right thing by holding?  

Do you ever actually believe you would get better more quickly if you CT or fast taper?  It's perfectly natural to believe that, unfortunately.  For most of our lives we have seen cause and effect work the way your wife expects it to work in this case.  I often wake up to another day in a state of panic once again for absolutely no "reason" and feel as if I'm living in an alternate universe where nothing is as it should be.  If I had not lived this I'm not sure I would believe it myself.   I'm so relieved that it is clearing up for me.  I believe completely that I will get well, and I believe the same is true for you.

[DaveB]

17 minutes ago, Rosetta said:

I'm wondering what you believe?  Do you have moments when you are sure you are doing the right thing by holding?  

Do you ever actually believe you would get better more quickly if you CT or fast taper?  It's perfectly natural to believe that, unfortunately.  For most of our lives we have seen cause and effect work the way your wife expects it to work in this case.  I often wake up to another day in a state of panic once again for absolutely no "reason" and feel as if I'm living in an alternate universe where nothing is as it should be.  If I had not lived this I'm not sure I would believe it myself.   I'm so relieved that it is clearing up for me.  I believe completely that I will get well, and I believe the same is true for you.

 

Rosetta, thanks for checking in, I always love your comments! I WANT to believe I will get better by holding, I feel like last Spring I was headed that way before I goofed it all up with testosterone and a fast taper. So I am really holding to that hope that it can happen, though feeling the way I do after two years of this certainly makes me doubt everything. I HOPE I will get better, but I guess my answer is up to this point I have very little evidence to point to to prove that hope to be true. That is why I often, far too often, have to rely on the hope and experiences of others on this site.

 

Today is a day where I certainly am doubting everything as I feel so terrible!

[Tom37]

I feel similar especially when struggling. I always feel that while everyone else stabilises I will be the exception and it won’t happen to me and this is my new life or should I say my new existence. 

 

If if I was off the drug and felt like I do would probably be a lot more optimistic.

[Rosetta]

Yes, that's what you need.  Someone to confirm that you are on the right course over and over and over again.  We do need that. Eventually my husband started to say, "I don't know any longer."  That was very hard to hear.  SA helped me through that stage.

[DaveB]

35 minutes ago, Tom37 said:

I feel similar especially when struggling. I always feel that while everyone else stabilises I will be the exception and it won’t happen to me and this is my new life or should I say my new existence. 

 

If if I was off the drug and felt like I do would probably be a lot more optimistic.

 

Exactly how I feel, especially the last part. I would get it if I felt this crappy off of everything, but I still am taking TWO drugs and feel terrible. I think that is where my wife is confused as well. Like “you are taking two drugs for anxiety...you have terrible anxiety...why keep taking the two drugs, they obviously don’t help!”

[Tom37]

I definitely get it.....but thats What being in stable unstable creates....RachelSusan took a good while before she felt fully stable even after her initial acute symptoms stopped and Nick took about 12 months before he felt good enough to say he was stable.  I know Gridley was about 4 months before he felt a lot better. Unfortunately everyone is different.

 

I could manage this a lot better if I KNEW it would end even if it’s 12 months I could handle it.

 

Those two cases give me a small bit of hope that I can get there too.

 

Edited January 29, 2019 by ChessieCat
made correction for member

[eymen23]

Totally understand where you’re coming from Dave, it can be discouraging to be taking an ‘effective dose’ of a medication and feel so unstable.

 

However, at this point Dave it is the prior changes that are causing the suffering, much more so than the current drug or dose. 

 

I think this is what we find so difficult. If we think about how human beings are conditioned, we are designed to feel anxiety whenever there is a threat (real or perceived) to our survival. Hence feeling strong anxiety gives us the sense that something in our current environment is harming us. Naturally we blame the drug or the current dose, but sometimes it is everything we did up until now that is causing the suffering. 

 

For example, if you had taken 10mg of Paxil for the past 2 years, you would likely feel very different to if you had taken 40mg of Paxil for 2 years and rapidly reduced to 10mg. However, the emotional suffering suggests to us that something we’re currently doing is ‘wrong’ or harmful, hence the 10mg dose is to blame, not the rapid drop. 

 

Another example, if you put your hand in a flame and you burn it, you will suddenly feel intense physical pain which prompts you to remove yourself from the harmful situation, by withdrawing you hand. Imagine you then put your hand into a bucket of cold water. Your hand is still hurting (it’s burnt), but that doesn’t mean you need to take your hand out of the water because the water is harmful.... your hand is hurting because of what previously happened. 

 

Hope this makes sense. 

[Altostrata]

Is there caffeine in the Monster drink? Can you post a photo of the label here?

 

What is your sleep pattern? Do you wake up often at night?

 

Overall, how have your symptoms changed since you decreased from 20mg Paxil to 10mg November 7? Better, worse, about the same?

[DaveB]

45 minutes ago, eymen23 said:

 

For example, if you had taken 10mg of Paxil for the past 2 years, you would likely feel very different to if you had taken 40mg of Paxil for 2 years and rapidly reduced to 10mg. However, the emotional suffering suggests to us that something we’re currently doing is ‘wrong’ or harmful, hence the 10mg dose is to blame, not the rapid drop. 

 

Another example, if you put your hand in a flame and you burn it, you will suddenly feel intense physical pain which prompts you to remove yourself from the harmful situation, by withdrawing you hand. Imagine you then put your hand into a bucket of cold water. Your hand is still hurting (it’s burnt), but that doesn’t mean you need to take your hand out of the water because the water is harmful.... your hand is hurting because of what previously happened. 

 

Hope this makes sense. 

 

Yes this actually does make sense. I gues now the question I wish I could have answered is, when does my hand stop burning!?! Haha.

[DaveB]

31 minutes ago, Altostrata said:

Is there caffeine in the Monster drink?

 

Yes, it is the Monster “Ultra Red” it has 140mgs of caffeine. 

 

31 minutes ago, Altostrata said:

What is your sleep pattern? Do you wake up often at night?

 

Sleep is pretty good, I sometimes wake in the middle (2-4AM) of the night, when I do I feel relaxed and always go back to sleep. I usually wake anywhere from 5:30 - 7 with anxiety. Like somewhere a light switch flips and the anxiety gets turned on about that time of day.