KathyLoop: 30+ years of drugs

[Shep]

On 3/11/2022 at 2:01 PM, KathyLoop said:

Also thinking I'd even out doses so that I'm taking the same amount every 8 hours... 0.12mg at 6:30am, 2:30pm and 10:30pm. Currently at .12/.11/.17.

 

Do you feel that having that tiny bit more at night may be helping with your sleep?

[KathyLoop]

I don't think it's making much difference. My sleep seems more dependent on my stress level. I get a decent sleep of about 7-8 hours maybe once a month. The rest of the time it's more like 4-6 depending on stress and hormones. I thought maybe having the same amount of drug in me at all times would help even out my emotional state.

 

Today's another awful day. So I'm glad I didn't cut yet at least. 

[Shep]

10 minutes ago, KathyLoop said:

I thought maybe having the same amount of drug in me at all times would help even out my emotional state.

 

It's possible it may.  Maybe move the amounts gradually, an hour a day, until it's where you want. That's the gentlest way to move doses. 

 

12 minutes ago, KathyLoop said:

Today's another awful day. So I'm glad I didn't cut yet at least. 

 

Maybe only cut 5% this time? Perhaps being more gentle right now is best. 

 

Please let us know how you do. 

[KathyLoop]

I haven't made a cut yet... maybe tonight.

 

I'm having a lot of symptoms and I keep hoping they'll ease so I can at least have one night of sleep before cutting, but they're not easing. Pain is the worst of it... head pressure, headache, hot, burning pain in neck, shoulders, back... heart pounds constantly. I thought this was menopausal stuff and maybe it is, but I'm also wondering if this is tolerance? I've been feeling hot the last 2 weeks. I've had this before... this hot sick feeling... but never with this much pain.

 

I've been doing physiotherapy twice a week for 6 months since my car accident... doesn't seem to be helping with the pain. I had a massage last night... felt better during and for about 20 minutes after, but then just back to pain. Had a hot bath after that and again, same thing... helped at first, but then the burning and pain started again.

 

The pain is always bad at night and in the mornings. I'm so angry in the mornings... this just goes on and on and I feel so angry that there's no way out. And then of course feeling angry just stresses me out more, tenses me up more and increases symptoms.

 

I feel better when I'm walking... I've been doing the stairs and halls in my building... but exercise seems to make it worse after or the next day. I just can't tell what helps or hurts any more.

 

Am I in tolerance withdrawal? What do I do? Is it maybe better to taper faster if it's tolerance, rather than dragging this out for years more?

 

I don't know if I should hold or cut.

[KathyLoop]

I decided to cut, rather than wait for your reply. Thanks for reading my rant... I'll carry on. No way but through, right?

[Shep]

On 3/18/2022 at 12:29 PM, KathyLoop said:

Am I in tolerance withdrawal? What do I do? Is it maybe better to taper faster if it's tolerance, rather than dragging this out for years more?

 

On 3/18/2022 at 12:29 PM, KathyLoop said:

I've been doing physiotherapy twice a week for 6 months since my car accident... doesn't seem to be helping with the pain.

 

Has the pain been constant since your car accident? Have you seen any improvements at all? 

 

[KathyLoop]

It's honestly hard for me to remember, since my mind isn't functioning all that great. I'm pretty sure there's been some improvement in my neck... I don't wake up with extreme neck pain like I did at first. But I'm typically sore all over most of the time... some days worse than others... markedly worse with any tiny increase in stress, especially in my head, shoulders and back.

 

I also have pre-existing issues with my neck and back. I have chronic pain from rotoscoliosis in my low back. And I had a big increase in neck pain following my rapid taper off Viibryd about a year ago.

 

But the level of pain all over that I've had since about October, the car accident, is definitely more than I've ever experienced before. And it seems to be ongoing, no matter what I do. Though admittedly, I'm not doing much... spending much of my day in bed still.

[Shep]

Thanks for the explanation, Kathy. I suspect you're dealing with battle fatigue, which makes the nervous system so much more fragile and more sensitive with these types of traumas layered on top of trauma. 

 

If you're able to do some gentle stretches, even in bed, that may help. You don't want your muscles to atrophy or tighten up. Very gentle yoga, if you're able to. 

 

Please let us know how you do with this latest reduction. 

[KathyLoop]

Thanks, Shep. Will do. I got out today for a walk... getting a few more walks in here and there... and some of the physiotherapy exercises too. I'll carry on. 

[KathyLoop]

I'm having a very hard time with rage and pain. My rages are completely out of control, screaming at and hitting my boyfriend, destroying things...  and the body pain goes off the charts with all this stress. I can't sleep much and I'm sure that isn't helping. I'm doing so much in the way of treatment.... physical therapy twice a week, Jungian therapy twice a week, chiropractor once a week, massages every second week, benzo support group 3 times a week, daily walks, daily meditations, good nutrition... and still it's really quite awful. I'm worried about how I will continue like this, tapering for another year or more at my present rate. Is there any other reasonable option? 

[Shep]

7 hours ago, KathyLoop said:

I'm doing so much in the way of treatment.... physical therapy twice a week, Jungian therapy twice a week, chiropractor once a week, massages every second week, benzo support group 3 times a week, daily walks, daily meditations, good nutrition... and still it's really quite awful.

 

Kathy, is it possible your symptoms are increasing because you're doing too much? 

[KathyLoop]

It's possible. I don't know which way is up anymore. I'm reluctant to stop treatment following the car accident, since it's all being paid for right now and I worry it'll be worse without treatment and I'd just return to laying in bed all the time. I just can't tell what helps, what hurts. No matter what I do, I feel bad most of the time. I can't stand it. Doing nothing, doing too much... it's infuriating that I can't find my way.

 

 

[Shep]

@KathyLoopWhat do you think about taking a break from the Jungian therapy for awhile? If that's to deal with trauma, you may not be ready for it just yet. 

[KathyLoop]

We're not really dealing with anything traumatic. It's mostly dream analysis... my dreams are fine... it's my waking life that is brutal... he says my life energy is stuck in my subconscious and my death energy is stuck in my waking life... though who knows if there's any truth to any of the Jungian stuff. He also helps me cope with the awfulness I'm going through. He's mostly trying to get me to live my life more... get out and do things, etc. I'm not sure I'd stay alive without the support. But I'll consider it.

 

 

[Shep]

Kathy, if you feel supported by this therapist, than it's good to go. As long a you feel good about it. 

[KathyLoop]

I'm 2 weeks since my last cut and the symptoms don't seem to let up. I'm getting a lot of all-over body pain, head ringing, poor sleep, and just generally feeling awful. I get no relief from my doses. So I'm wondering if it might make sense to cut more often and just get off the drug quicker, since I keep hearing that healing doesn't really start until we're off. I was thinking of cutting every 3 weeks, instead of waiting 4. Last month, I got no further relief in the 4th week. If anything, I feel a bit better after a cut, though it's mixed because some symptoms get quite severe during that first week. I understand Ashton recommends 5-10% of current dose every 2-4 weeks, so I'd be within her guideline. I also know the online community recommends no more than 10% each month, but that would take me more than another year.

 

Thoughts?

[Shep]

7 hours ago, KathyLoop said:

I'm 2 weeks since my last cut and the symptoms don't seem to let up. I'm getting a lot of all-over body pain, head ringing, poor sleep, and just generally feeling awful.

 

Are these new symptoms, Kathy? You're in a time frame where an updose is still safe. If you were feeling better before your last cut, you may want to updose a bit.

 

 

7 hours ago, KathyLoop said:

since I keep hearing that healing doesn't really start until we're off.

 

This isn't true. If it were, people wouldn't feel better after reinstatements.

[KathyLoop]

No, they're not new symptoms... I told myself I'd never updose, as it's just withdrawal I'd have to go through again and there may not be much relief anyway... it wasn't much different before my last cut, but every cut is obviously difficult. I've had a lot of pain for a long time, especially since my car accident last October, having to move in with my parents' and then back to my boyfriend's and now finally back in my own apartment again after two years of being away. The increased symptoms may be stress-related. All-over body pain is fairly constant. I'm thinking central sensitization. The pain itself is stressful... and a few nights with little sleep really sends things off the charts a bit.

 

Things are finally starting to calm down in my life, learning to just get through the day, being on my own, etc. I've even had a bit of a window for a few hours today. 

 

Thanks for clarifying that my info about not healing until we're off is not accurate. So I guess you're saying I shouldn't rush the taper to get off more quickly? If anything, maybe you're suggesting I'm going too fast?

 

I guess it helps me to just check in and get some perspective. Perhaps I should do it more. I generally post when I'm in real distress, and I'm reluctant to bug you with updates as I know you're busy.

[Shep]

On 5/26/2022 at 8:51 PM, KathyLoop said:

Thanks for clarifying that my info about not healing until we're off is not accurate. So I guess you're saying I shouldn't rush the taper to get off more quickly? If anything, maybe you're suggesting I'm going too fast?

 

Exactly. As you get to the lower doses, it can be harder to taper. This is very common. So taking more time in between drops may be helpful, along with a lower taper rate.

 

On 5/26/2022 at 8:51 PM, KathyLoop said:

I guess it helps me to just check in and get some perspective. Perhaps I should do it more. I generally post when I'm in real distress, and I'm reluctant to bug you with updates as I know you're busy.

 

Drop by anytime. You may also want to pop into other members' threads to encourage them. That often gets other members to pop into your thread. And then you can build up a support team.

[KathyLoop]

I think I'm developing bad inter-dose withdrawal. About 5-6 hours after each dose, I get a rush of hot, sick, head ringing, head burning, torso burning, increased irritability and freaking out, increased pain and tightness, panicky because I still have so long to taper and not sure I can manage this 3x a day. It's been like this the last week or two, but I'm honestly not even sure of that since I'm dealing with a lot of dp/dr. I'm due for another cut very soon. I'm again wondering if I need to switch to valium, though I don't really want to do that either. I'm just having a very hard time the past week or two. Wondering if another reduction might help, but I'm honestly scared to do that as well. It's very hard to think straight about any of this when I'm in this state.

 

Any thoughts?

[ChessieCat]

@Frogie Are you able to assist please?  Thanks.

[Frogie]

@KathyLoop

 

You could try another taper since it looks like your last taper was the 1st part of July. It will take a few days for it to take effect though.

 

At the low dose you are at now, I don't think switching to Valium would help.

[KathyLoop]

@Frogie

Should I maybe try dosing 4x a day? I could do .06mg every 6 hours, so that would also include a taper of .01. I'm just concerned that it'd be an abrupt change from my current dosing: .08/.07/.1 at 8 hour intervals. That change in my 10pm dose, from .1 to .06 is the one that might hit me hardest. But maybe it would smooth things out to take the same amount all day?

 

And just curious why you don't think a switch to valium would help? If this is inter-dose withdrawal, then wouldn't the longer half-life be of some benefit?

[Greatful]

@KathyLoop  I breezed through your thread, I want to say you are one tough lady.  Wow you are almost drug free after 30 years.  Way to go.  I am working on the same goal after 25 years or so of drugs.  

I was wonder if you heard of Baylissa Frederick?  She went through protracted withdrawal from Benzos.

She has a wonderful book Recovery and Renewal.  She is also a counselor/therapist.  Maybe you would find some additiational encouragement from her website https://mccare.org/

 

You are so not alone in this.  Please feel free to drop me a line anytime.  I would love to support you anyway I can. Us long time drugs users need to stick together to make it to a drug free state of mind🌞

[Frogie]

You could try 4 times a day and see if that helps. It might smooth out after a couple of days. 

[KathyLoop]

@Greatful

Thanks for that. I appreciate the kind words.

 

Yes, I'm familiar with Baylissa, though I haven't checked out her new site yet... I'll have a look.

 

Reading through your signature, I can see you've been through the ringer with these meds as well. Looks like you're down to just Lamictal. I got the rash with that one... remember being so disappointed I couldn't take it!

 

I don't know what your experience is, but it seems to me that the taper off the last drug can be the worst. Or maybe it's because I'm tapering a benzo and have been kindled like crazy, so every tiny amount is brutal and even the holds are brutal, ugh. I'm whiny, sorry. I'm just having a really hard time with all the burning... my head burns, my torso burns... but the head burning just makes me feel incredibly agitated and like I can't possibly continue with this. For another year maybe?! I'm so tempted to taper faster and just get through it somehow, rather than dragging this awfulness out. But there's just no good option, it seems. So then I go into SI. And of course, all that ruminating just winds up my symptoms, so round and round, I go. And then tomorrow's another day and I have to do it all over again. After all these years of awful, I just don't know how much more I can take of this. Ugh.

 

So that's me... you've very kind to reach out. I have windows that last a couple hours maybe, where I'm back to feeling good and hopeful even, and where I can be kind and thoughtful and helpful to others... but then the awfulness crowds back in and I'm back to this crazy unstable person who just goes on and on. 

 

I hope you're doing ok with your taper... I hope we both somehow get off this last little bit and find a way to actually live an ok life.

[Greatful]

@KathyLoop

I wish I was down to just one drug.😓 I ended up on 4 drugs when I went into a panic from what I now know was a to fast of a taper off of Prozac summer of 2020.  The panic and wanting to fix the pain.  To bad me or my doctor didn't know what was going on.  IF you look closely you will see I am on Lexapro, 2.5mg (and tapering it) Lamictal 25mg, Trazdone 25mg and Xanax .0625ml 3x a day. Relatively low doses according to doctors, but as we know, they are still strong enough to mess with our brains.

 

I can so relate to just wanting this to be over with.  I struggle with the same notion, how can I keep doing this.  I feel that trapped feeling quite a bit.  My brain is a mess LOL  I am getting hit pretty hard with morphed mental garbage. I dream of the day when I can think straight and with a rational mind.

 

I love the round and round I go.  I can't seem to get off this roller coaster or merry-go-round. LOL.  I go  to bed at night and think  about  how it will all start again the next day.  Somehow we make it to the pillow every night.

 

Stay focused on the end game and stay in the moment as much as we can.🤗

 

 

 

 

 

[KathyLoop]

Sorry for all the drugs. I've certainly been there. Every time I tried to come off over the years, I'd end up in hospital and on even more drugs... or ect and drugs... ugh. I had no clue about withdrawal and neither did my doctors. Horrible. At least we know what's going on now.

 

I agree, those are relatively low doses you're on, but still, a serious cocktail and a difficult tapering experience. I like what you say about staying focused on the end game, stay in the moment.

 

I've decided to try dosing 4x a day... started this morning, so hopefully that eases my ride. 

 

Hope your ride today is as smooth as possible. I wonder if we start referring to it as a ride, if that'll make it seem more fun?! I'm going to maybe try that... 

[Greatful]

@KathyLoop  You are doing pretty well considering you did a lot of CT's and fast tapers.

  Did you have a hard time with stopping trazodone?  What dose were you on? and for how long?

 

Count yourself lucky that you didn't stay on the Lamictal.  I was horribly blunted, I had a horrible memory,

hard time finding words, anger, defent, I think it was the one that caused me to choke which lead to a lot of throwing up.  I could choke or I would get a tickle that made you cough.  One time I was eating in a restaurant and swallowed funny and had to go to the bathroom and ended up throwing up.  Since I went way down on the Lamictal it's gone down significantly.  Maybe it was the Prozac  or Prozac/ lamictal combo who know.  It was getting so bad I was choking and throwing up at work.  I think choking is a side effect of the Lamictal. 

 

You got this, you will be drug free before you know it🌞

[KathyLoop]

@Greatful

 

I forgot to tag you in my earlier post, so not sure you saw it... scroll up if you didn't. I haven't used this site much and am still learning how it works. 

 

Thank you again for the kind words... I really appreciate the encouragement.

 

That sounds horrible with the lamictal... I guess the only thing worse than a life-threatening rash is not getting the rash but getting horrible side-effects! I never knew about the vomiting thing. Ugh. So hard to know what's causing what when we're polydrugged. Crazy doctors, crazy drugs... not sure why any of them think polydrugging is ever wise, but I guess they're doing their best with the crappy tools they have. I had no clue for 3 decades! I hope you will be able to continue tapering and be off soon too. I know it's an awful road.

 

Yes, I've had many CT's and fast tapers... truly amazed I survived the last few years... many close calls. But hopefully in the home stretch now. Still have many horrible days and get bad SI, but don't think I'm in danger of actually doing it anymore. Therapy has helped.

 

I took Trazodone for many years... many. Like probably 25. I took 50mg for most of that time, sometimes 100mg, came off and on a few times when it didn't seem to work well anymore. And then towards the end, I was alternating sleep meds... my god, worst idea ever... kindling much? Traz was one of 4 meds I was alternating... my doc thought this was a good way to avoid becoming tolerant of any of them. When it seemed like the Traz was making me feel sick the entire day after, I just dropped it. Because I was on so many other meds, I didn't notice anything terrible and wasn't taking it regularly by that time. I was also already in horrible withdrawal from a fast AD taper at the time, so I really was just barely hanging on, bed-bound mostly, so who knows what dropping the traz did... I had too much going on to really notice.

[Greatful]

@KathyLoop  

Yes I saw your earlier post.🌞

You truly are a strong woman.  I know how hard this is when we feel so awful.  Just think of the day when your brain gets back to it's own homeostasis.  Think clearly and not feel so sick all the time.

It is truly a shame most doctors are not open to how much these drugs can hurt someone.  You mostly hear comments like that can't be from the drug.  Winter of 2020 -2021 when I went through the nightmare of drug hopping to find a quick fix, my poor brain was a mess.  After trying several drugs and my  doctor let me taper down the Lamictal at the same time as titrating up on Seroquel,  CT'd the seroquel after 6 weeks and started up on the Lexapro  shortly after.  I went almost psychotic during all this,  I was worried the bird singing could turn into them talking to me, I was afraid of the strong wind outside, thought it might turn into a mans voice, I was worried that peoples eyes where trying to tell me something, I has the most awful fear, I would feel like there was something that I was suppose to be afraid of, I would feel like I had to look around me to see what was scaring me,  to name a few horrible, horrible dylusions that I suffered through.  Things are getting better but I still have fear center in my brain that is overactive I get this blocked feeling in the front of my brain.  Like there is a knot in my forehead.  My thinking is disrupted or not connected right.  Does any of this make sense to you? LOL  The sad thing is you don't know what is causing what,  is it the drugs that are making you crazy or is it Withdrawal.  I am going with a both of them UGH.

      It is better but I still can't think straight or with a rational mind.  I also have adr from the Lexapro, hence the need to get off the lexapro.  My hubby thinks the Lamictal is also a bad drug for me. All these drugs can't be playing nice in my poor brain.😬

You mentioned Trazodone making you feel sick here is a little information about the nasty drug Trazodone

Click on the title to open.

Have you ever read the story What is Happening In Your Brain.  It is written by a woman that recovered from benzo withdrawal and her degrees are in speech- language pathology.  It helped me to trust that my craziness was from my mind and that my brain is disconnected causing my mind to think crazy. 

this should keep you busy for a little while LOL

 

Have a great day

 

[KathyLoop]

@Greatful

Yes, pretty sure I read both of those writings... I'm long off traz so don't want to re-read it... and the benzo stuff is just too much in my current state... reading again about brain damage when there's nothing that can be done about it isn't very helpful... I truly am in benzo hell these days.

 

I can relate to the "almost psychotic" stuff... I have some of that going on myself still, with the benzo taper. And I have been fully psychotic in the past... that's what ECT did to me... 5 days of a waking nightmare, complete with gruesomely distorted faces (like in that movie, The Devil's Advocate, if you've seen it) and other horrific hallucinations, peeing on the floor, believing I didn't exist because I saw no reflection in the mirror, etc. Slept with the light on for 6 months after that. Came out of that hospital worse than when I got there... complete with the new problem of panic attacks. F-ucking psychiatry.

 

I'm glad to hear you have a husband at least. I hope he's helpful and supportive and kind to you. I think it is likely both the drugs and the withdrawal process doing this to you. And to me. Is your plan to get off and stay off all drugs? That's what I'm trying to do... but it's brutal... this last taper... not sleeping, so many symptoms, no relief, and still a long time to go... SI almost every day... today's a bad one, but I'm starting to come out of it a bit. Not sleeping really does a serious number on me.

 

Hope your day is as ok as it can possibly be.

 

 

[Greatful]

@KathyLoop  Hi, checking to see how you are doing.

Wow ECT did that to you.  The drugs are doing it to me.  I am cutting my Lexapro right now. I cut 0.02ml a day to get close to10% Still not fun but it has to be done Right.  I do plan on getting off all drugs. 

 

I am sorry that you are still having such a hard time.  You do inspire me to stay the course and get off.  Thank goodness we have this forum to talk to each other.  Just knowing I am not the only one is a big help, that this is happen to a lot of people. I really hope one day soon the whole world will be up to date about these drugs.  Kind of like the benzo story.  Now they finally admit to the dangers of benzos.  We just need to get out from under Big Pharma.  Big news with the new article about  "Chemical imbalance and antidepressants".  Hopefully the doctors that use this term will stop.  

 

Hang in there🌞

[KathyLoop]

@Greatful

 

Good to hear from you. Looks like you're doing well with the lexapro... I'm tapering at about the same rate on the ativan, so maybe we'll both finish about the same time. You're doing it. We both are, apparently. And I guess if we just keep going, we'll actually get there. At least you don't have a benzo in there! The more I learn about benzos, the more they seem like one of the worst classes of drugs out there. Psych meds, what a mess, all of them.

 

I've had a very rough couple of days, but lightening a bit now, finally. So hard to face this, day after day after day, ugh. But that's what's on the plate, right? No escape. Went into some serious rage over my brutal plate...

 

And yes, it does help to be part of a community. I appreciate your emails. I've also found the Benzo Warrior Community on facebook to be quite helpful... they even have zoom calls several times a week to help us get through. Hope you have enough support in your world.

[Greatful]

@KathyLoop

You are doing a fantastic job trying to stay focused and keep going.

Sadly I am on a benzo too.  small amount 0.0625 x 3> 7am, 2pm 8:30pm.  

My goal is to get off the lexapro and Lamictal first then the trazodone and Xanax

 

I so can relate to trudging through the rough days.  The days can seem long.  Somehow we make it to our pillows at night in hopes that tomorrow will be easier.  Plus we are one day closer to getting off these drugs.

It can be so easy to get caught up in the how long is this going to take and can I do it. But it is what's on our plates and we have no where else to go but through it.

 

I see you are slitting your Ativan to 4 times a day.  It's so crazy to think taking a small amount at one time is doing anything. 

 

Again I am so proud of you for all that you have accomplished.  Hold on to the thought, dream of taking that last little drop of Ativan and then putting all this behind you.😊 I am glad that you are finding support that helps you through this.  It sure can feel lonely sometimes.  We get to watch the world go on with it's normal stream of activity as we try to grasp the stagnated life we have now.  At least for me anyways.

 

I hope you get a decent nights sleep soon. 🌞

Edited August 10, 2022 by Greatful

[Greatful]

@KathyLoopHow are you doing?