Rachelina: in crisis and afraid I'll never get off Paxil

[nz11]

I agree with everything songbird said .

 

How is the 2mg are you feeling better.

[Rachelina]

Not yet NZ11, but thanks for asking. I actually had a really great window right around Christmas Eve, and I thought I was starting to come out of this for real this time! But once again I was right back in it the next day. Christmas was awful which I attributed to stress and chaos. Had a somewhat better day yesterday and today am feeling awful again, just the worst bleakest depression ever, like there is no hope of ever feeling good again. So tired of this roller coaster! Reading Songbird's posts helped. With a crash of this magnitude it's going to be a matter of months, not days or weeks, and accepting that helps me relax a bit.

 

About the stress....I'm not sure stress is the primary factor in this breakdown. Several of the factors I mentioned weren't an issue yet at the time of the crash. There has been stress of various levels for years now, and it definitely contributed to this, given that withdrawal lowers our resilience to stress. But since the crash more things keep happening: teenagers that were away have moved back in, the future of my husband's job is suddenly in great doubt, and another family member is having a breakdown (largely from all this stress, but her own issues as well) that rivals mine in magnitude. All that is new. So I do think that tapering too fast is the primary cause of this, but I'm so afraid that all of this stress is going to stop me from healing.

[nz11]

Hope the rollercoaster comes to a halt soon...and you are successful in the taper off.

[Rachel1963]

Hi Rachel; its me, Other Rachel. I just want to tell you I'm thinking about you and saying a little prayer for you if that's okay.

[Rachelina]

Hi Rachel! Thank you for the prayers, I need all the help I can get! I'm sending prayers for healing your way too.

[AmyK]

How are you, Rachelina? Thinking of you, hugs!

[Songbird]

How are you, Rachelina? Thinking of you, hugs!

 

Me too!  Hope things are improving.

[Rachelina]

Thank you Songbird and Amy! I have been having a lot of ups and downs. I've had pretty good windows when I feel almost like myself and think I'm stabilizing, but then I'll have days that are just as dark as ever. The one thing that never changes is waking every morning at 4 am in a state of extreme anxiety and weird internal tremor. When that starts to go, I'll know I'm really on my way out of this crash. I am starting to have more confidence that I will eventually stabilize on 2 mg, probably over the next few months.

 

I have also started tapering Klonopin. Taking it was a huge mistake and I've been worrying so much about being on it, so it feels good to be tapering. Hopefully since I wasn't on it very long it won't be too hard, but I will still take it slow.

 

I'm still having a hard time coming to terms with the fact that this happened. This is by far the worst crisis of any kind that I've ever been through in my entire life. Worse than when I quit at 5 mg, worse than when I crashed at 4.5 mg. Those times I was better in a month, but it's going on three months now. I just don't get it. I'm scared at what it means for my chances of ever getting off Paxil, but right now I don't care so much about that, I just want to feel alive again. And I do have moments when I feel alive, and they help me to trust that I will heal from this eventually.

[AmyK]

You sound a lot calmer now. I am so sorry you have to go through this! You will definately heal. But when you are in the middle of it it seems (seems!) so impossible. Acceptance is a step forward. The windows are such a good sign.

Lots of love,

Amy

[Rachel1963]

Hi Rachelina! I found you! I have read your story and I'm very inspired by your courage. You sound like an amazing person and an awesome mom too...I have two boys, 27 and 25. I bet you will be feeling better very soon.

[Songbird]

I am starting to have more confidence that I will eventually stabilize on 2 mg, probably over the next few months.

That's good.  Keep telling yourself that you will.  I found that really helpful.

 

I have also started tapering Klonopin. Taking it was a huge mistake and I've been worrying so much about being on it, so it feels good to be tapering. Hopefully since I wasn't on it very long it won't be too hard, but I will still take it slow.

Try not worry about it, as worry will only ramp up your anxiety.  Tell yourself that it is a tool that you are using in the short-term.  Using a tool means you are in control of it, not the other way around.

 

This is by far the worst crisis of any kind that I've ever been through in my entire life. Worse than when I quit at 5 mg, worse than when I crashed at 4.5 mg. Those times I was better in a month, but it's going on three months now. I just don't get it. I'm scared at what it means for my chances of ever getting off Paxil, but right now I don't care so much about that, I just want to feel alive again. And I do have moments when I feel alive, and they help me to trust that I will heal from this eventually.

My crash at 4.5mg was far worse than the previous crash, which I recovered from in about a month.  I crashed at the end of April, and didn't feel very stable again until October, although by September I was a lot better.  May, June and July were horrendous.  I felt like I'd never be able to think about tapering again, but by December I felt a lot different, and I was ready then.  So things can change, it won't always feel like this.

 

I'm glad you have some good moments, hold on to those.  I remember how good it felt when I had little windows of feeling like myself.  I realised that the 'real me' was really still in there, just not accessible all the time.  (((HUGS)))

[Rachelina]

Having a really hard time today after reading the news about Bluebalu. I related to her so much, she was kind of my "crash sister" because we crashed at the same time and seemed to be having the same kind of soul-level agony as a primary symptom. We were PMing daily. The past few weeks she was getting dramatically worse and I didn't know how to help, just kept repeating the same stuff about how healing takes time. I thought maybe it was helping because she kept writing back. When it became obvious she was suicidal I told her to go to the hospital. But she said she was going to a doctor's appointment instead and that was the last I heard from her. I just wish there was something I could have done. I'm so so so so sad. Writing this here because I didn't want to make her thread be about me.

[ladybug]

Me too, Rach. It's terrifying what happened to her. I only messaged with her once, but she seemed so sweet and was so tortured. Seems like the two of you were closer. I'm sorry you lost your friend. You know I'm always here for you. Damn these drugs.

[AmyK]

I was so sad and terrified to read this too. I dont know what to say but to send a warm hug.

[Songbird]

I didn't really know her, but still this news upsets me too.  So many lately...every time it really freaks me out.  I feel really upset and angry and other feelings I can't even find names for.  It reminds me of a time when I came that close to it...and that I'm lucky to still be around.  Sometimes I have also had the thoughts of wondering if I could have done something more to help someone, but I don't think it is healthy to go too far along that way of thinking.  We do what we can here, but we are not responsible for everything that happens to everyone - we mustn't feel guilty or beat ourselves up over it, it is not the fault of anyone here.  It's the freaking drugs.  I'm so sorry you lost your "crash sister", Rachelina, that must be difficult.  I feel like I have some w/d "sisters" here too, especially you and Ladybug, the slow taperers from back in pp days, who have also experienced crashes at times.  Thinking of you, Rachelina (((Hugs)))

[Rachelina]

Thank you so much, Ladybug, Amy and Songbird. You are all my withdrawal sisters too and your support means so much to me.

 

Just to update, I feel like I have been doing so much better lately even though I'm still far from stable. Still waking around 4:30 every morning with tons of anxiety, usually have lots of morning brain fog and start feeling decent in the afternoon. The other day I drove for the first time since October! Just a short distance, but I'm very agoraphobic at the best of times so this felt like a huge step.

 

And a few days ago I learned that Donald Trump is going to be speaking two blocks from my house!! I can't believe it. I have been seriously considering going to the protest outside, because I feel so strongly against everything he stands for. What a nightmare if he gets elected. Right now I'm doubting that I'm going to make it (it's tomorrow) but just that I could even think about going is light years from where I was a month ago. The desire to stand up for my values is a good sign that my spirit is coming back.

 

Today though I've been really really down and can't stop thinking about Blue. So strange how we can feel such a connection to people we've never met. I hope that her loss will inspire me and others to do all we can to spread the word about the dangers of these drugs.

[LoveandLight]

Yes I'm also feeling the loss of Blue greatly. I don't know about anyone else but I got so much worse over the past three months and became more agoraphobia and less physically functional or able to connect, basically able to have a life that connecting to people over the internet became greatly important..as we are with people who understand. I really miss her already we talked a lot. Hug xxx

[ladybug]

It makes me so happy to hear that you've had improvement, Rach. And, omg, Donald Trump! I can't stand that man. No WAY is he going to be elected. I'm holding out hope for Bernie.

[Songbird]

Just to update, I feel like I have been doing so much better lately even though I'm still far from stable. Still waking around 4:30 every morning with tons of anxiety, usually have lots of morning brain fog and start feeling decent in the afternoon. The other day I drove for the first time since October! Just a short distance, but I'm very agoraphobic at the best of times so this felt like a huge step.

 

That is great news, and a good sign.  I still wake with anxiety some days, and feel pretty crappy in the mornings and better in the afternoons.  Fairly mild compared to you I guess, but it does seem to be a common pattern in w/d in general I think.  It's good to hear of your improvements.  I must admit, even though I'm doing fairly well, I feel quite sensitive and not very strong, so the thought of protesting kind of freaks me out as I don't feel strong enough to take it on, if you know what I mean.  I see people here talk about complaining to the authorities and so on, and I admire them for it, but feel too weak to do anything like that myself, I just feel like I couldn't cope with the stress of it.  I actually did go to my first protest march (against the TPPA) last year, though.  Let us know what happens with Donald!

[Rachelina]

It makes me so happy to hear that you've had improvement, Rach. And, omg, Donald Trump! I can't stand that man. No WAY is he going to be elected. I'm holding out hope for Bernie.

Me too, Ladybug! Bernie's amazing. I went to see him twice last summer and Elliot and I got to shake his hand. I wasn't even trying to meet him, he just walked up to me. One of my big disappointments about this crash is that I signed up to volunteer for his campaign but ended up not being able to do anything at all. At least I'll manage to vote. And he's definitely winning here at least, almost everyone I know is behind him.

 

Good for you Songbird about the TPPA protest! I have signed a bunch of petitions and sent emails about that. I don't think I'm going to manage going to the protest tonight though; like you said I am super sensitive right now and I think it would be too much for me. My husband got the whole family tickets for the event (just out of curiosity I guess; we all feel the same way about him), and my protest can be not showing up.

[AmyK]

Hi Rachelina. I just want to stop by and cheer you on. I saw that you have continued with the tapering. Good for you!

I am so happy you feel more stable.

All the best, Amy

[Rachelina]

Thank you so much, Amy! I am doing SO much better. I still have a lot of ups and downs and am nowhere near back to where I was before I crashed. But I think I will get there in a few more months. I avoided posting because I didn't want to jinx it - every other time I posted that I was stabilizing, I was right back in the worst of it before long. Crossing my fingers that it won't happen this time. My sleep is consistently better which I think is a really good sign, because even when I had better times during my crash, my sleep was still messed up. 

 

So I have been feeling well enough to taper again, and made a tiny drop a few weeks ago, but it turns out I may not have dropped at all! I posted this in the tapering section but have not gotten any responses so will copy here what I posted there. Any advice welcome! 

 

So, after crashing in November I've finally come to feel stable enough to start tapering again. I wanted to make a tiny drop of around 2.5%, so I went from 2 mg to 1.96 mg, which is two tiny lines on my syringe. But today I noticed that when lowering the plunger from the 1 mL (2 mg) mark down two lines, nothing comes out!! In fact it takes a whole five lines, or .05 mL (.1 mg) before a drop comes out! And it's kind of random whether the drop is going to come out or not. Sometimes it just hangs there, undecided. So now I'm really worried about the accuracy of tapering by liquid. Is it really impossible to make drops any smaller than .1 mg? Why are the smaller lines even there if they don't mean anything? Or do they mean something after all, am I somehow getting a lower dose on average by going down two lines even if nothing comes out? 

[Jlynn]

Try lowing the plunger till fluid starts to load in the syringe and then push it all the way back to the top and then lower again. That gets all of the air out of the syringe and pulls the medication back into the tube. How are you loading your syringe? I got a 50 ml bottle from the pharmacy and bought a thing that looks like a little funnel there where the pill boxes are and I shove that into the bottle, put the syringe on that and then turn it upside down and draw the medication.

 

The funnel thing is called a dosage korc according to google.  

[ChessieCat]

"dosage korc" the things we are learning about!!!

[Rachelina]

Thank you Jlynn, I don't have one of those things and just dip the syringe into the bottle. Maybe I'll try getting one. But I feel like the problem is more in the size of the drop that comes out. When I push the plunger from 1 mL to 0, 20 - 22 drops come out. There are 100 small lines on the syringe, so unless you're getting 100 drops to come out between 1 and 0, aren't those smaller lines meaningless? Which means it's impossible to taper in increments smaller than .1 mg. Plus the fact that sometimes I get 20 drops and sometimes 22 means that even if I only care about using the larger lines, I still can't depend on getting the same dose every day. Starting to wonder if making my own liquid might be more accurate.

[Altostrata]

What size syringe are you using? The 1mL or 0.5mL syringes have ticks at hundredths of a mL. I think the 2mL syringe might, too.

 

Ask your compounding pharmacy for an adapter to put on the top of the bottle, so you can insert the syringe. This is the "korc" -- that's the brand name of an adapter you can buy.

[Skyler]

Rachelina.. are you getting the air bubbles out of the syringe?  If you have air sometimes, and at others do not, this could cause the problem you are seeing.  

[Songbird]

What is the mg/ml of your liquid?  e.g. 1mg per ml?  2mg per ml?  I don't use the tiny lines on my 1ml syringe, but by stopping halfway between the bigger lines every 0.05ml, I can get drops of 0.025ml.  As my liquid is 1mg/ml this means drops of 0.025mg.  I've never actually tried counting how many drops come out though.

 

If you're getting 20 drops out of 1ml, that's 0.05ml per drop.  If your liquid is 2mg/ml this would mean drops of 0.1mg.  Maybe you could measure out some of your liquid and dilute it to 1mg/ml, or perhaps even further?  I haven't tried this, but if you mixed it well, it might be more reliable than trying to make your own liquid.

[Rachelina]

What size syringe are you using? The 1mL or 0.5mL syringes have ticks at hundredths of a mL. I think the 2mL syringe might, too.

 

Ask your compounding pharmacy for an adapter to put on the top of the bottle, so you can insert the syringe. This is the "korc" -- that's the brand name of an adapter you can buy.

I am using a 1 mL syringe. So there are 100 lines on it, but if only 20 drops come out between 1 mL and 0 then doesn't that mean the smaller lines are meaningless? I thought I had made a small drop on 3/2 but nothing comes out between the 1 mL mark (which was my previous dose) and the line I'm using now. It takes a whole 5 lines before anything comes out. So it seems I can't make drops smaller than .1 mg, which I really need to do. I was wondering about a 0.5 mL syringe, but it sounds like that would be no better. 

 

Does the korc stay on the syringe when you are emptying it into your mouth, or does it stay on the bottle? If it stays on the bottle then it's not going to change how many drops come out. But maybe it could help with air bubbles and thus with accuracy.

 

Rachelina.. are you getting the air bubbles out of the syringe?  If you have air sometimes, and at others do not, this could cause the problem you are seeing.  

I'm doing my best to get air bubbles out, but sometimes there still are some. You're probably exactly right about bubbles causing the slight variation in how many drops come out. Maybe the korc will help with this. 

 

What is the mg/ml of your liquid?  e.g. 1mg per ml?  2mg per ml?  I don't use the tiny lines on my 1ml syringe, but by stopping halfway between the bigger lines every 0.05ml, I can get drops of 0.025ml.  As my liquid is 1mg/ml this means drops of 0.025mg.  I've never actually tried counting how many drops come out though.

 

If you're getting 20 drops out of 1ml, that's 0.05ml per drop.  If your liquid is 2mg/ml this would mean drops of 0.1mg.  Maybe you could measure out some of your liquid and dilute it to 1mg/ml, or perhaps even further?  I haven't tried this, but if you mixed it well, it might be more reliable than trying to make your own liquid.

The concentration is 2 mg per mL. So yes, each drop that comes out is roughly .1 mg. But because of all the trouble I've had tapering, I really need to make smaller drops than that, especially as I get lower. I never again want to drop more than 5%, but I don't see how I'm going to manage that with the system I'm using now. Diluting the liquid is a good idea! Have others done this? I wonder if I would be able to save it to avoid having to waste medication?

[Rachelina]

Anyone??

 

I feel like a have a few options:

 

1. Make my own liquid.

 

2. Dilute my liquid so that I can measure my dose accurately. Anyone know if this is OK? I searched relevant threads in the tapering section and couldn't find any mention of anyone doing this, ever. 

 

3. Pretend I never noticed any of this, and proceed using the smaller lines. If I do this it will take me exactly the same amount of time to get from, say, 2 mg to 1 mg as it would using more accurate measurement.  I feel like longer holds will compensate for the bigger drops. Although below 1 mg, the drops are going to get bigger than 10%, and I'm not comfortable with that even with long holds.

 

Any thoughts?

[ladybug]

Hey, Rach! I did a search for "diluting" and found a few people who have diluted liquid. Most dilute pill solutions cause they can't afford or access the liquid, but I do think that diluting the liquid would be much easier and more accurate than making your own.

 

Also, here is a topic where they discuss it:

 

http://survivingantidepressants.org/index.php?/topic/6142-diluting-a-liquid-prescription-ethanol-water/?hl=diluting

 

So it's basically just a matter of doing the math to figure out how much you want to drop and make a solution that will allow you to do it.

[AmyK]

How are you, Rachelina? Sending healing thoughts. Hugs!

[Rachelina]

Wow, it's been more than three years since I posted an update. I'm not doing well. I've been in a strange awful crash since February. It's different from all my previous crashes in that I don't think Paxil withdrawal is the main factor. I'd been doing a sort of Brassmonkey slide where I would drop by .02 mg every two or three weeks, then hold for 6 weeks at every .1 mg increment (so holding at .9, .8, etc.). I was doing really well like this for the past couple of years. Then this winter I went through a ton of stress. First it was about my son, who was sick for a long while then started showing signs of having a major anxiety disorder (he's 7). Then there was major family conflict, including a period where one family member went into psychotic rages so severe that the police were called to our house three times in one 24-hour period. Not long after that, I think I had a bad reaction to a high dose of CBD oil, though I can't be sure. Everyone swears that it can't do you any harm. But when I searched the topic on this site, I found one person who said it sent them into a nightmarish panic, and that's what happened to me. This was late February and  I've haven't come quite out of it yet. 

 

This is also different from my previous crashes in that it's much less constant.  With other crashes, it was weeks or months of relentless agony: terror, derealization, unfathomably awful depression. So awful that each time, I ended up taking Klonopin daily to survive it, and then had to taper off it. This time, I do have good days when I feel like myself and feel like the crash is over. And then the next day it's back into the same state of hell, just as bad as ever. I have had to take Klonopin many times in this crash too but thus far have avoided taking it daily and becoming dependent on it. In other crashes I barely left the house, but in this one I've been able to stick to my routine of taking my son to his activities a few times a week and going for nature walks both alone and with family.  In January I started an herbal apprenticeship, and I've managed to keep up with attending classes, intern hours and homework, even though I'm not feeling a lot of interest in it. 

 

Also different: it's lasting a lot longer, which scares me. It's been more than three months and no sign of letting up; it's getting worse if anything. And possibly it's stress that keeps me in it. Early on the family conflict was still going strong and I was the target of some major emotional and verbal abuse. Fortunately that person is in therapy now which seems to be helping. Then about three weeks ago I had a terrible fight with my husband and had a horrible reaction; feeling suicidal, thinking the marriage was over, self-harm because I didn't know what to do with my feelings. Then the next day was the worst yet of the crash, and I think I am still recovering from that setback. I ordered some DBT resources (for dealing with extreme emotions) because I understand that my nervous system is so sensitive right now that it can't handle such intense emotions; they can send me right back to ground zero of this crash. 

 

Also different: I haven't panicked and increased my Paxil dose. I have actually continued tapering a bit, at a slower rate. I was on .7 mg when I crashed and I held there for two months. Then I dropped to .68 mg and held there a month, and am now on .66 mg.  So I made two small drops (I can't make drops any smaller than .02 mg) though honestly because of dosage variation I don't think a .02 mg drop makes much difference. Each time I was feeling fairly well and thought that dropping would have a positive psychological effect, in that I would feel I was making progress on my taper. I'm feeling awful again though, so even though it's been a month I think I will hold here until I'm feeling better (which could very well be tomorrow).  I just can't believe I'm STILL going through this, after 12 years of trying to taper. I can't continue like this indefinitely; if this goes on much longer I will be tempted to switch to another drug, as I know some fellow Paxil taperers have done with success, though that's a terrifying thought as well. 

 

Thoughts and advice welcome!

[Songbird]

Hi Rachelina, good to see you again!  I also crashed again, about three years ago.  Like you, I believe it was not directly from withdrawal but from life stressors overwhelming my system's ability to cope.  I believe ADs leave the nervous system less resilient to stress.  It does scare me how sensitive my system has become.  I've been trying to taper for about 14 years. 

 

You've done brilliantly to get down to such a low dose!  I was down to 2.6mg at the time I crashed again.  I tried a small updose, that did nothing, and eventually I gave in (again!), but instead of updosing paroxetine, I added a full dose of citalopram and then tapered the rest of the paroxetine.  Since then I've been tapering citalopram and I'm now down to 3.4mg. 

 

I've made changes in my life to make it less stressful.  I work for myself now and only part-time hours.    I'm sorry to hear you've had such a stressful time with your family.  You've written "possibly it's the stress that keeps me in it" - I think that's very likely.  I hope you can find some way to reduce the stress in your life, I think it would make a big difference.

[Rachelina]

Thank you so much, Songbird. I was hoping I would hear from you! I relate to your tapering experience so much. I'm seriously considering trying the switch as well and will message you to ask you more about it. I'm glad you're doing so well. It must be wonderful to be free of Paxil after all those years. 

 

Unfortunately I have very little control over the amount of stress in my household. There are roughly 11 to 13 people who live here at any given time, with a new baby due in a few weeks, and my needs are not much of a priority for anyone. Since I can't change the level of chaos all I can do is try to change my reactions, and I am working on that. 

 

I had a wonderful day on Wednesday and so I did decide to make the tiny drop I had planned, then yesterday and today have been awful again. I went to my herb class yesterday but barely got through it, was in panic/derealization the whole time and then crying on the way home because I feel like I'm never going to get my life back. Even though I had it back just the day before! The ups and downs of this crash are insane; I've never experienced anything like this before. Until I started checking in here again, I was pretty sure this crash was not to do with Paxil. But now I'm scared again that it is. I saw that Altostrata posted on someone's thread, "Some people are unable to get off that last bit of Paxil." And I got scared that that's what's happening. Alto? Do you have any thoughts on my situation? Also wondering, does anyone think it's possible that the high dose of CBD oil in February could precipitate a crash, which I've been unable to recover from because of continued stress?

[bubble]

6 hours ago, Rachelina said:

 

I had a wonderful day on Wednesday and so I did decide to make the tiny drop I had planned, then yesterday and today have been awful again

Hello Rachelina, I hope you don't mind me sharing some insights. What I quoted is a mistake we all frequently make: feel a bit better and then reduce. Planning cuts, however small, according to a calendar instead of by careful observation of symptoms is another thing that gets us into trouble. People who are successful in their tapers hold in times of stress and in general have periods of long holds. It's very likely CBD oil caused a bad reaction and all subsequent cuts were too much for your CNS. I just felt like pointing at other possible causes of your struggle rather than impossibility of tapering Paxil.

 

Songbird was successful with her switch but I remember more people who were not so lucky. Very often it happens that the new drug doesn't cover WD from the first one, sometimes it causes an adverse reaction and we see people ending up on two drugs because they need to reinstate the first one (Flowers comes to my mind). All in all, a very risky and potentially messy situation...

6 hours ago, Rachelina said:

and my needs are not much of a priority for anyone. Since I can't change the level of chaos all I can do is try to change my reactions, and I am working on that. 

I love this approach. I think it should help you stabilise together with holding (and even with a potential updose).