delsol: Off meds completely this time, need support

[delsol]

Mod note:  first introduction, titled " need help with chronic urticaria/oversensitive system"

Admin note: delsol: Withdrawal from PRN (2x week) dosing?

 

Hello, I hope to get some reassurance and support here. I recently did genetic testing and found out that the Wellbutrin (450 mg.) I took was not being metabolized by my body. At first this was great news, as I thought it explained so much about the insane allergic symptoms/stomach pains/nerve pains that I had been experiencing. Basically, I tapered off 450 mg. in less than a week. My last dose was Jan. 6, 2017.

 

(Deep breaths).  Prior to that, about four months prior (Aug. 2016), my doc took me off Trintellix 10mg.--which I had been on **with the Wellbutrin.** I went off the Trintellix almost cold-turkey (I was having manic symptoms, and my doc wanted to get me off of the Trintellix as soon as possible).

 

Over the past few months, I've also been on-and-off several mood stabilizers (Tegretol, Trileptal, and Topamax), each of which I tried for an average of 2-3 weeks, then stopped. (These dosages never got very high).

 

My main problem is a chronic hypersensitivity that presents as chronic urticaria (as has been diagnosed by an allergist). Every time I eat, shower, wear tight clothes, or exercise, my tissues swell up, I feel nauseated, I itch everywhere, my nerves tingle, my eyes water, my muscles stiffen, and I get extremely depressed (crying, etc.). As I write this, I should not be questioning that my hypersensitive system is caused by major med withdrawal issues. But sometimes I feel I'm very sick, with no hope of recovering whatsoever.

 

To make matters worse, I've been on antidepressants for 25 years -- yes, you read that correctly -- 25 years. I wanted to do a slower taper of the Wellbutrin, but doc and I thought I was getting toxic from it, so it's not like I had a chance to taper. 

 

Right now, I'm on 50 mg. of nortriptyline to "take the edge off" my symptoms. It helps a little but not very much. I feel trapped, basically. The hyperallergic responses are controlling my life and are a living nightmare. 

 

Ugh, I hope to see some of my own story reflected here. Things feel pretty miserable right now.

 

 

Edited January 8, 2020 by Shep
first title added to top of post (MMT), added admin note (Shep)

[scallywag]

delsol -- Welcome to Surviving Antidepressants (SA)
 
I'm sorry to read your account of what's happened in the last 6 months for you. That's a lot of on-and-off medications.
 
It can take some time, 6-8 weeks, for a new medication to reach its full effectiveness, even with someone who has never taken a neuro-active prescription medication. Because of the multiple medication changes made since August, your CNS (central nervous system) has probably been destabilized. As such, it may take you longer to see the intended effects of the medicaton than it would for a "newbie."
 
Our best understanding of these symptoms is that the CNS makes changes to neurotransmitter cells and processes when a drug is introduced. When we decrease dose or discontinue the medication, the CNS starts to "un-make" the changes. If the CNS can't make these adjustments to keep up with the discontinuation pace, we get symptoms.  The discussions/videos at these links provide additional explanations of the process:
One theory of anti-depressant withdrawal syndrome
How your brain responds to psychiatric drugs - aka "Brain remodeling"
Youtube video, 4 minutes: Healing from antidepressants

A request: Would you summarize your history in a signature -- drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly?

• Any drugs prior to 24 months ago can just be listed with start and stop years.
• Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago)
• Spell out months, e.g. "October" or "Oct."; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016.
• Please leave out symptoms and diagnoses.
• A list is easier to understand than one or multiple paragraphs.
• You can find instructions in this topic: Please put your withdrawal history in signature
• If you are using a phone or mobile device, you need to switch to the "full" or desktop version of the site. Instructions are in Post 9 and Post 10

Some people find supplementation with omega 3 fatty acids and/or magnesium helpful. Start with one or the other at a low dose and work your way up. Please see these topics for more detail:
Omega-3 fatty acids (fish oil).
Magnesium, nature's calcium channel blocker.
 
For reference, here are our topics on medications  you've taken:
Tips for tapering off Wellbutrin XR, SR, XL (bupropion).
Tapering vortioxetine (aka Brintellix or Trintellix): does anyone have any knowledge.
Tips for tapering off Trileptal (oxcarbazepine).
Tips for tapering off nortriptyline.

I hope you'll find the information in the SA forums helpful for your situation. I'm sorry that you are in the position that you need the information, but am glad that you found us.

[delsol]

Mod note:  2nd introduction :  titled:  ongoing withdrawals, back here after several months

 

Hi all. I've been away from this site for a while, not for any major reason except I occasionally felt better, or was using other coping strategies. Anyway, my latest taper was down from 50mg of Pamelor (nortriptyline) to 45 mg., about 6 weeks ago. What I'm noticing is that the 6-weeks period after a dosage reduction is way worse than 2 weeks out. I feel insane, especially with the body pain. I also feel tightness in my chest a lot, and crazy heartburn, and ongoing histamine intolerance.

 

My thing is I have been on and off so many meds, it's hard to know which change is the cause of my current ills. Like I went cold turkey off Wellbutrin almost a year ago (and switched to nortriptyline), it's hard to know how much of this is still the Wellbutrin withdrawal.

 

Update: I ended up in the psych hospital with severe akathisia this past July. I blame it on the Wellbutrin cold-turkey thing that happened 6 months prior. Anyway, I need support and reassurance right now. I feel so often like I've got this constant inner restlessness. Plus just in the past 3 months, I've developed joint pains that are so frustrating. It feels like it will never get better. Sigh. Right now I'm also on 600 mg. of gabapentin, and while I don't like psych drugs, it is the only thing keeping the akathisia from being worse than it already is. 

 

delsol

Edited December 28, 2019 by manymoretodays
title added to post

[FarmGirlWorks]

Hang in there, delsol. Glad you have this forum as a resource. Hopefully, someone who know more about your specific issues will come along soon

[Kristine]

5 hours ago, delsol said:

Anyway, I need support and reassurance right now.

Hi Delsol, Just thought I'd say hello and extend my support to you.  You are obviously a strong person. From your intro it's clear you have been through much hardship.  When I was taking seroquel I suffered from horrible heartburn/reflex.  I ended up drinking two teaspoons of apple cider vinegar (mixed in a glass of water) every morning.  It cleared up in 4 days.  It's not the type you buy at the supermarket but the apple cider vinegar with 'the mother'. In Australia I purchase it at either the pharmacy or health food shop.  You are going to be ok ☺️ K

[bubble]

Hello Delsol.

 

I noticed your post on Petunia's thread and then noticed you alternate dosage to taper. This can cause severe withdrawal so it would be good to look into ways of tapering in a safe way:

 

 

[delsol]

I am finding that withdrawal symptoms take a while to hit "full force," and this is what is so hard. Usually the "full force" hits about 6 weeks after a dose reduction. So if I find a compounding pharmacist and a doctor who is willing to write a script for me this way, I think I am going to have to wait at least 6 weeks before knowing whether I can take the next step in reducing. Currently I'm on gabapentin 300mg 2-3x per day (usually twice);  nortriptyline 25 mg. (tapered it down from 75 mg. starting 7 months ago in Feb. '19; this was probably too quick but I don't want to reinstate); and Trintellix 5 mg. (tried to taper down from 10 mg. 6 weeks ago).  One of the reasons I'm trying to get off Trintellix as fast as possible is because my insurance changed, and it's not covered any more.  I am so tired of this crap. I've been trying to get off meds for 27 years. 

[delsol]

Mod note:  3rd introduction, merged with previous 2,  Titled: Back again. Completely off Meds This Time and Needing Support

 

I've posted on here periodically during various phases of my withdrawal. As of November 30, I've had no psych meds at all. (Hopefully my signature loads with my history). Anyway, what I'm looking for is support: I need lots right now. I feel this med - go - round and withdrawal saga just keeps dragging on.

 

Please know that I am not interested in reinstating anything at this point. And while for some people, smaller and smaller 10% reductions are helpful and are largely recommended, my situation felt so unbearable on my last 25 mg. of nortriptyline (especially the drugged feeling, sleep paralysis, and sickening poisoned-stomach feeling which was making my body constantly feel like it was trying to detox), I needed to just "jump off," because I don't think I had anything to lose.

 

I still feel that way. But ohhhh mannnnnn... I am experiencing (for the first time) the chronic neck-pulling / chronic desire to move my jaw and head feeling. I've had akathisia of the legs before, but this is new -- and frightening. I cannot sleep because of this electric wave chronically flowing through my body, burning restless akathisia of the legs and arms, and now this constant tugging-to-the-right feeling in my head. I am just not knowing what to do anymore.  Also, my eyeballs burn, and even when I eat, it's like my whole insides start burning, not like heartburn, but the nerves of my organs themselves.  Every time I chew, I get so dizzy, so it's hard to eat. I am afraid to shower because of feeling like I'll pass out.

 

These sudden urges to yell out things are happening. Like I get the urge to just scream at people and tell them I hate them; I get intrusive images of harming people; I also am getting intrusive visions of scary things like blood. I never had any visual phenomena like that before. I know, know, know this is withdrawal. And yet I really think I am losing my freaking mind and won't ever recover; my spouse and I just bought a house and I am afraid of losing everything I ever loved and wanted. 

 

Please, if anyone can just lend a few kind words and some hope, that is what I need. I am so, so scared right now. I fear I've fried my brain permanently.

Edited December 28, 2019 by manymoretodays
added title before merging with previous 2 introductions

[Gridley]

2 hours ago, delsol said:

Please, if anyone can just lend a few kind words and some hope, that is what I need. I am so, so scared right now. I fear I've fried my brain permanently.

Delsol, I sorry you're going through these terrible symptoms.  They are typical withdrawal symptoms, and what you are experiencing is entirely normal. The good news is the symptoms will pass and you will heal.  I wish I could give you a time frame as to when that will happen, but we just don't know.  The other good news is that you have not damaged your brain permanently.  The brain has a remarkable capacity to heal itself, called neuroplasticity, and your bran will heal as have so many other on this site.  I suggest you Google survivingantidepressants.org success stories and read a few when the going gets rough.  

 

Your brain is not damaged permanently.

 

You will heal.

 

Healing is going on right now and constantly.  

 

 

 

 

 

 

Edited December 10, 2019 by Gridley

[Snorky]

2 hours ago, delsol said:

I've posted on here periodically during various phases of my withdrawal. As of November 30, I've had no psych meds at all. (Hopefully my signature loads with my history). Anyway, what I'm looking for is support: I need lots right now. I feel this med - go - round and withdrawal saga just keeps dragging on.

 

Please know that I am not interested in reinstating anything at this point. And while for some people, smaller and smaller 10% reductions are helpful and are largely recommended, my situation felt so unbearable on my last 25 mg. of nortriptyline (especially the drugged feeling, sleep paralysis, and sickening poisoned-stomach feeling which was making my body constantly feel like it was trying to detox), I needed to just "jump off," because I don't think I had anything to lose.

 

I still feel that way. But ohhhh mannnnnn... I am experiencing (for the first time) the chronic neck-pulling / chronic desire to move my jaw and head feeling. I've had akathisia of the legs before, but this is new -- and frightening. I cannot sleep because of this electric wave chronically flowing through my body, burning restless akathisia of the legs and arms, and now this constant tugging-to-the-right feeling in my head. I am just not knowing what to do anymore.  Also, my eyeballs burn, and even when I eat, it's like my whole insides start burning, not like heartburn, but the nerves of my organs themselves.  Every time I chew, I get so dizzy, so it's hard to eat. I am afraid to shower because of feeling like I'll pass out.

 

These sudden urges to yell out things are happening. Like I get the urge to just scream at people and tell them I hate them; I get intrusive images of harming people; I also am getting intrusive visions of scary things like blood. I never had any visual phenomena like that before. I know, know, know this is withdrawal. And yet I really think I am losing my freaking mind and won't ever recover; my spouse and I just bought a house and I am afraid of losing everything I ever loved and wanted. 

 

Please, if anyone can just lend a few kind words and some hope, that is what I need. I am so, so scared right now. I fear I've fried my brain permanently.

Hi

 

I recently came off amitriptyline, which may be related to your med. Although only on the med for a year, but thirty years of other ADs before that. I’ve  had the jaw pulling, neck tension thing for years. It’s not an involuntary thing, but you feel compelled to do it to somehow relieve the awful muscular tension in those muscles. It’s one of the physical neuro symptoms that got much worse after I CT amitriptyline in Sept. 

[delsol]

Yes, amitriptyline is a tricyclic like nortriptyline. The movement problems are common when stopping this class of meds.  It really, really sucks so bad right now. I see you CT-ed in September but then only reinstated at 5 mg. Did you find that helpful at all, or was it not worth it to reinstate that low? I don't want to reinstate, but if worst comes to worst, I may be open to trying a mini-dose like you did. 

 

I have been on meds for 27 years, so it's nice to some other people on here who have been trying this ordeal for a very, **very** long time. Thirty years on ADs ... I admire your courage and hope to stick this through so that 2020 can be my first med-free year since college.

[Snorky]

10 hours ago, delsol said:

Yes, amitriptyline is a tricyclic like nortriptyline. The movement problems are common when stopping this class of meds.  It really, really sucks so bad right now. I see you CT-ed in September but then only reinstated at 5 mg. Did you find that helpful at all, or was it not worth it to reinstate that low? I don't want to reinstate, but if worst comes to worst, I may be open to trying a mini-dose like you did. 

 

I have been on meds for 27 years, so it's nice to some other people on here who have been trying this ordeal for a very, **very** long time. Thirty years on ADs ... I admire your courage and hope to stick this through so that 2020 can be my first med-free year since college.

Hi again

 

Forgot to mention that the jaw pulling thing has become s bit of a side show compared to much more significant physical and mental symptoms. Ie Parkinson’s like tremors, which are getting worse and more visible, and regular stabbing pains in arms and legs. Mental-this is the worst. Feeling of tightness/tension that completely blocks sleep, thinking communicating etc. I’m sure there are chemical reasons for my insomnia (two hours s night), but this mental anguish then stops you going back to sleep.

 

Hope you see some alleviation in your symptoms.

 

God bless.

[delsol]

Ok if anyone reads this, I am in extreme dire straits. I just don't know what to do. I realize I've tapered too quickly. I am in such bad suicidal akathisia and extrapyramidals (torso locking up, twitching neck and legs) right now and have been for a few days. I wanted to get past Christmas at least, before deciding whether I need to go to the ER or not. The thing is, they'll give me more drugs there. I feel caught between a rock and a hard place. I don't want more meds -- it's too late for reinstating and the nortriptyline was giving me heinous dysphoric suicidal thoughts anyway. But I want my life, as awful as I feel. I have a wife and a mom and friends who need and love me. I just don't know what to do. I have supports who have been amazing in my life. But I feel very at risk right now, and I cannot put this onto my loved ones to always be keeping me safe.

 

I fear I've ruined my brain entirely.  The suicidal urges are so intense and yet the reason I got off the drugs in the first place is because they were causing suicidal urges. I spent an hour today copying/pasting success stories into one file, so I can read them and have hope. I know that if I need to go to the ER, I will, I just feel defeated and need to know others have gotten through this kind of thing. Thank you.

[manymoretodays]

Hi delsol, and welcome back,

I think I've managed to get you all merged together with previous introductions(2).  We do like to keep members to 1 introduction.  Thank you.

 

And it sounds like you are in a really tough spot right now, and may have been for quite some time off and on.  Hang in there, please.  No, you have not ruined your brain completely.  And good for you to have focused on success stories now.  That may help until the intensity lets on up.  A thought is just that.  A thought.  No reason you have to take any action.  Sometimes, the holiday period can be so tough, for so many.

 

I'm seeing that your medications most recently discontinued, were gabapentin, with nortriptyline being the last one off on the 30th of November.

How have your symptoms changed in the last month?

 

Do you have any nortryptiline available?  I mean it's possible a very small re-instatement of that, may help.  We can get into that more, if you are able.  Mean time keep us updated.  You've come off so many in such a short time delsol.  Often that can result in some pretty fierce symptoms, as you know.

 

Hugs, And best,

L, P, H, and G,

mmt

 

 

Edited December 28, 2019 by manymoretodays

[Altostrata]

Hello, delsol, did you find gabapentin at all helpful? That's another drug that can cause withdrawal syndrome when tapered too fast.

 

You might try reinstating perhaps 5mg gabapentin and see if that helps. Or, 5mg nortriptyline might alleviate some withdrawal symptoms without causing adverse reactions, which are related to the size of the dose. If you try these, try them only one at a time and observe for a week so you can see what it does.

 

I understand you don't want to take any other drugs but other than that, all we can do is urge you to hang on, be patient, and cope with your symptoms until they fade away.

 

A lot of people find fish oil and magnesium supplements helpful, see
https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/
https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

Try a little bit of one at a time to see how it affects you.

 

Please let us know how you're doing.

[delsol]

Thanks for your helpful suggestions. I made an appointment with a holistic psychiatrist whose specialty is helping people like us; my appointment is Tuesday 12/31 and it is quite possible I may be able to get a rx. for mini-doses from him. I still have a couple of nortriptyline capsules and gabapentin. At first, gabapentin was a great help for dealing with my hellish Wellbutrin withdrawal of 2017. It seemed to help for over a year without me ever building a tolerance, which is fortunate compared to other people's experiences (can be addictive for some). Then though, just like most meds, it started making me either dysphoric or like my brain was lighting up in weird places and would give me a brief high followed by a crash. Hence it seemed like it needed to go. I agree my tapers have been fast; ideally I would have liked to go slower but symptoms of wretched suicidal ideation got so much worse as my time on these drugs went on. (Also, while I can't prove it, I think I had some serotonin syndrome going on). 

 

Well anyway things were pretty bad when I stopped the gabapentin (which before that point was causing my nerves and muscles to seize up and cause what felt like mini seizures in my sleep). But the hell has amplified 100fold since taking away the last 25 mg of nortriptyline. The thing is, in my mind I tapered so quickly to save my life. I realized how suicidal that drug was making me. The suicidals I have now are of a different quality, more due to akathisia and loss of cognitive function, as well as to intense derealizaion and sensory disturbances, than to a drug effect.

 

Anyway I have started amping up my Omegas with nuts, seeds, avocados, coconut oil, etc. and just bought a good quality fish oil that I will start today. 

 

My hunch is that nortriptyline was much more evil on my brain than gabapentin, and if I am to reinstate a small dose, it would be to try the gabapentin.

 

 

[PoetJester]

Hi Delsol

 

You could try looking at a youtube video by Josh Jensen.   he had had akathisia/extrapyrmidals pretty severely after a med withdrawal and found that smoking cannabis gave him relief and allowed his body to become under control again.  Josh posted a series of videos showing his akathisia symptoms and then also a couple before and after videos where he smoked cannabis and the symptoms went away.  They're pretty incredible videos.  If you just put "Josh Jensen akithisia"  in the search engine on youtube, the video list should pop up.

 

Poetjester (Derek)

[PoetJester]

 

[Altostrata]

@PoetJester Please, let us caution that using cannabis may have unpredictable, possibly unpleasant, effects. Unfortunately, it's not a miracle drug, either.

 

3 hours ago, delsol said:

Thanks for your helpful suggestions. I made an appointment with a holistic psychiatrist whose specialty is helping people like us; my appointment is Tuesday 12/31 and it is quite possible I may be able to get a rx. for mini-doses from him. I still have a couple of nortriptyline capsules and gabapentin. At first, gabapentin was a great help for dealing with my hellish Wellbutrin withdrawal of 2017. It seemed to help for over a year without me ever building a tolerance, which is fortunate compared to other people's experiences (can be addictive for some). Then though, just like most meds, it started making me either dysphoric or like my brain was lighting up in weird places and would give me a brief high followed by a crash. Hence it seemed like it needed to go. I agree my tapers have been fast; ideally I would have liked to go slower but symptoms of wretched suicidal ideation got so much worse as my time on these drugs went on. (Also, while I can't prove it, I think I had some serotonin syndrome going on). 

 

Well anyway things were pretty bad when I stopped the gabapentin (which before that point was causing my nerves and muscles to seize up and cause what felt like mini seizures in my sleep).

....

My hunch is that nortriptyline was much more evil on my brain than gabapentin, and if I am to reinstate a small dose, it would be to try the gabapentin.

 

Not sure what was going on with the gabapentin. Could be a drug interaction or interdose withdrawal. The sleep issue sounds like a paradoxical reaction from too-high dosage.

 

I agree, reinstating a very low dose of gabapentin would be the more benign option.

 

Your going off nortriptyline may have compounded withdrawal syndrome from gabapentin.

 

Please let us know what the integrative psychiatrist suggests. I would be wary of pricey supplement packages, cortisol tests, genetic tests, etc.

[delsol]

I am going to just stick with a couple of supplements (fish oil and one I've taken for years, which is Vit. D). 

 

One thing I feel is worth mentioning, in terms of the brain and how it heals: I was in a bad car accident many years ago, and I remember early on thinking things would never get better, specifically the severe cognitive disorientation and inability to process loud lights and sounds. I remember I had tried to go to a community workshop and couldn't sit through it for an hour (despite previously loving school and doing well). I saw that as proof that my life was "over." And yet, about 3 years later, I went back to school for a whole new degree program and did well. Similarly, for a while, I couldn't drive two miles to the store because my brain would feel so overwhelmed, but eventually I worked my way up to 6-hour road trips. Both things felt insurmountable and impossible but were attainable with time and healing.

 

So I'm hoping the same logic holds true here. Right now, I can barely leave the house. My executive functioning is terrible; making a meal feels overwhelming because I can't organize all the steps. The world feels strange and unreal; my own home seems scary and unfamiliar at times. Today, my wife really wanted to go to the movies, and that's something I took for granted even three months ago, but I'm hoping one day I'll be able to look back on my terror of going to the movies and see that it, too, was not an insurmountable possibility, just like school and driving were, in the case of my car accident. In a way, maybe the car accident was to teach me things later in life about withdrawal.

 

Anyway, this is what I have to tell myself to get by right now. I do feel that as "executive functioning" comes back, other things will have more perspective. At least I hope so.

 

 

[manymoretodays]

Hi delsol,

Here's our topic with:

Tips for tapering off Neurontin(gabapentin)

If you have a change of mind, this will help you figure out how to get the smaller dosages of gabapentin. 

 

Keep us updated please.

 

In the year 2020, we'll all be completely healed! 

L, P, H, and G,

mmt

 

 

[Shep]

Please note delson now has a benzo forum thread here:

 

delsol: Withdrawal from PRN (2x week) dosing?

 

 

[delsol]

Hi again folks. I have been having a very difficult time lately; I was at an inpatient hospital and got out a couple of weeks ago.  I am really realizing now how tough this withdrawal journey can be. I thought it was difficult before, but now... Wow. Despair has been worse.

 

I think the most bizarre symptom right now is this feeling of complete emotional and physical disconnection from my loved ones. It's like I know they're there and that I'm loved, but I can't... feel it?  I feel as if they are imposters or aren't real. I realize this isn't in fact true but can't get the thoughts out of my head. As a result, it's been much harder for me to connect with people and have a solid reason to stay afloat during my depression.  I am hoping the disconnect is a withdrawal symptom and not something else. I am married; I feel a million miles away from my spouse, even when she is right there in the room with me, talking or hugging. It feels so, so, so lonely, knowing I am not at all alone yet as if I somehow am alien or stranded on an island. 

 

I was instated on a regular daily dose of Klonipin (.5 mg. daily) in the hospital. I don't like how dull it makes me feel. I am afraid I will never recover now, due to being on a regular medication again. My fear is:  Is it possible to recover from the ADs if I am now on a regular benzo?  Or will recovery not really start until I can get off the benzo, which could take a very long time?  I suppose the answer is that I can still recover from ADs -- Recovery is not all-or-nothing ... But I cannot seem to feel anything rational at this point and am full of fear. 

 

Anyone who can speak to an improvement in depression after the ADs, or to the feelings of intense alienation:  This is what I need right now. Please and thank you. I feel so hopeless at times. 

[Gridley]

14 minutes ago, delsol said:

intense alienation

The alienation you speak of and the feeling that your loved ones are real are known as depersonalization and derealization.  Look at Altostrata's post about 10 posts down in the following link.  It's a very common withdrawal symptoms and goes away eventually.

 

Derealization or Depersonalization - Surviving Antidepressants

15 minutes ago, delsol said:

I suppose the answer is that I can still recover from ADs -- Recovery is not all-or-nothing ...

 

Yes, that's correct.  You can heal from AD's while being on a benzo.  It's not all or nothing.

[manymoretodays]

3 hours ago, delsol said:

Anyone who can speak to an improvement in depression after the ADs, or to the feelings of intense alienation:  This is what I need right now. Please and thank you. I feel so hopeless at times. 

 

Hi delsol,

Definitely an improvement in the the low feelings here, after many, many years of medication.  I don't even like to call it "depression" anymore.

I'm over 3 years out from my last drug now, and it's so much easier and better.

 

Just recently, I had a late wave with some of the DP/DR and lowish feelings.  It can be weird, as waves come on, now, for me........it felt like someone had just put a dark filter over everything, and for awhile things just were not the same.  I also felt so overwhelmed, all of the sudden, by stuff I previously had been just fine with.  

 

Having been here for awhile now, myself, helped.  I have this whole new understanding and could manage.  And just wait.   And indeed, it passed. 

For the most part, I could put it all into the perspective of a "wave", and who knows.........may be my last one.   I hope so.  One does need to be very attentive to body, mind, and spirit in the aftermath of many drugs for many years, and I am learning how to listen......when my body or mind speaks. 

 

Also learning "self care" like I never did before.  And not in a selfish way.......no, not at all........in a  kind of "hey, if I don't take care of myself, then I am no good for others way" and also "if I don't take care of myself, who will?".  I mean these are late in life lessons for me, too.  Important ones though.  I'm done with professionals messing with me, in any case.  That, all the labels and drugs, did a number on me.

 

So now my challenge is to try not to "overdo" and put too much on my plate, so to speak.  At least not all at once.  I have a pretty busy, nice life now.  Imma almost "normal"........only kidding......that's not my goal.    But I am me, a wholer me than I ever used to be.

 

3 hours ago, Gridley said:

Yes, that's correct.  You can heal from AD's while being on a benzo.  It's not all or nothing.

 

Gridley is very sage ^.  I agree wholeheartedly. 

 

I hope this helps delsol.  I'm so sorry it got so very tough for you.  And it can take awhile after a hospitalization to regain oneself again.  I know.  Cut yourself a bit of slack and take loving care of you right now.

 

Best,

L, P, H, and G,

mmt

[manymoretodays]

  

1 hour ago, delsol said:

 

 

@SuperwomanTolerance withdrawal especially is common with benzos. Basically you go into withdrawals, sometimes severe, even though you are on your normal dose. It's as if you've quit, except you haven't.

 

@Shep  I reinstated gabapentin about a week ago, 300mg 2x/day. It doesn't help much but also doesn't seem to be hurting. I was at 1mg PRN of Klonopin for a couple of years. Sometimes I only used it 1x/week; sometimes up to 5x/week. At the time I was placed on the .5mg daily Kpin, I had been in bad withdrawals from trying to CT Klonopin. My doc thought a steady daily dose of .5 was better than infrequent doses of 1mg. I don't know if that was right or not, as now my dependency seems worse than before. I guess I was wondering if increasing back up to 1mg (except maybe dividing it into two .5mg doses) would be something to ask my prescriber about. Then again I could easily reach tolerance on that dose as well. I don't know, I really feel sad about this whole thing. I am so proud of getting off antidepressants, but now there's this, and tolerance withdrawals from benzos have a whole different feel to them than antidepressant withdrawals.

 

Hi delsol, @delsol

Sounds really tough for you now, or that it has continued to be so.  I quoted your most recent post over here too, from the benzo forum, so we could look more at your gabapentin reinstatement.

 

Could you add your gabapentin reinstatement to your signature:  AccountsSettings/signature ?

"About a week ago" would be 2020 February 27.

 

How did you reinstate it?

And then could you note the times that you are taking your drugs, include the Klonopin, as well as any supplements taken throughout the day?  Just note the time on the left, and drugs and supplements, as well as symptoms, as they occur throughout the day. Keeping daily notes has a simple note format to use, that is helpful in doing this.  And then post again, right here, on your main introduction.

 

I think if it was me, I might want to, perhaps, consider an even lower dose, of gabapentin to stabilize on, now........as then there would be even less to taper off of later, as well as the decreased drug load.

 

I'm including Tips for tapering off Neurotin(gabapentin)  here, again now, for your perusal too.

This ^ is great as far as learning more about the drug, and how to dose with non-standard doses.  The bulk of the information, around gabapentin, starts in the 5th post down, in topic.

Of note too(from link ^)

Taking magnesium at the same time as gabapentin decreases the absorption of gabapentin.

Avoid taking aluminum or magnesium containing products (such as antacids) for 2 hours before your gabapentin.

 

And oh, delsol.......sounds quite hard now, with the symptoms you are reporting.  Please let us know how we might help.

 

L, P, H, and G,

mmt

 

Edited March 5, 2020 by manymoretodays

[delsol]

Hi @manymoretodays  I tried to update my signature a little. I had to take out some things, to make my signature fit guidelines for how many lines it allows, so hopefully I still have enough info to be helpful.

 

I think the main thing for me is wondering how long to stay at a dose of Klonopin; I know going up and down is not wise. However I hate how dysphoric I feel; hence the up-down. On the PRN doses I don't remember quite the same dysphoria, even though doses were higher. Yet when I try to reduce the Kpin too much, I get a gut-wrenching suicidal feeling that isn't any more pleasant than the alternative. I see myself looking ahead to months or years of Kpin tapering and sometimes it feels like I'll never see the light of day. Until I started this Kpin madness, I was still getting out of the house and running errands. I really need to be able to get out of the house, in order to maintain sanity, and lately on the .5mg, it's been harder and harder to do so. Some of this is my own fault; maybe if I never would have tried to come down from my daily .5mg dose, I could still be out there driving my car, etc. It was after I tried to come down from my daily .5 that things really started getting worse. 

[manymoretodays]

Hi delsol,

Signature:  yikes I see Klonopin/clonazepam listed at 5 mg!  Don't forget the decimal point!

And it's helpful.  You reinstated both drugs on the same day. 

 

And I do see: (Kpin dose usually taken in a.m. between 5-8 a.m.; gabapentin once in a.m. and once around 6 p.m.)

I want to see a bit more though.

 

So......it's even more crucial that you go ahead and give us some of the daily notes.

I do see your symptoms, in your above post......and then some over on your benzo forum post.

With the notes, we can see how symptoms are, before, and after your drugs.

Over here, I'm mainly concerned with that gabapentin dose that you reinstated at.......after 3 months off it.  Usually we'd have you reinstate much lower than the last full dose you took.  That's the harm reduction way.  As even with AD's and drugs like gabapentin, kindling is a risk and or paradoxical reactions, or sensitivities.  So, with just a week of gabapentin now, you might be able to reduce way down in dosage, and tolerate it.

 

If I were you, I'd want to stick with the Klonopin, until last........as far as getting off it.   That is usually the best way......from my understanding it can buffer some of the other WD's.

You're also still dealing with lot's of WD from the other drugs in 2019 too, no doubt.

 

So, please fix up the dose of Klonopin in your signature.  (that won't take any more lines, or anything, use the link I gave you, to get back there)

Then:  daily notes

read through the first part of the link(it's bolded above), and then post 24 hours, right here.......times, drugs, doses, symptoms as they occur(some even rate symptoms in intensity), any supplements, and sleep.

Like this:

6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep

 

This will be so helpful, both for you and us to see. 

And then hopefully, we can guide you to some changes, that WILL get you back to the WD stability that allows you to still drive and function, a bit more than right now.  So hang in there.......healing isn't always quick........but it's just around the corner.

 

L, P, H, and G,

mmt

Edited March 6, 2020 by manymoretodays
bolding

[delsol]

Okay I'm going to try and do a daily notes for yesterday, into this morning. It may not be completely the right format but I'm going to go from memory.  I am now experiencing a level of withdrawal psychosis that I previously only experienced when I tried to C/T. Yesterday despite this was actually quite good, but my night was harrowing.

 

Thurs., 3/5/20

3 a.m. Woke in middle of night feeling "need" for Klonopin. (Yesterday's dose was at 5 a.m.) Took dose. Fell back asleep.

8 a.m.: Woke up feeling tired but like maybe things might be okay today. 

9:30 a.m. (?) Took fish oil, Vit. D, gabapentin 300mg. Felt less agoraphobic than yesterday. Had ride to go to my therapy group; spring air; excited to go out

11:30 a.m.: Walked around town and even ate lunch at one of my favorite cafes (haven't been able to do so for a while due to sensory issues); did feel some weird whooshing in ears and perceptual difficulties

1-4 p.m. Therapy group; some hallucinations (e.g., a woman's face looked like it was covered in worms for a second); sometimes could hear rumbling in my head; some sudden dark suicidal fleeting thoughts but also followed by feeling okay

4:30: Decided to walk around town some more. Air felt good. Heard strange sounds like garbled voices in ears.

5:00: Met wife at bus stop and rode home together. Sometimes bus feels overwhelming but today it didn't.

6:00:  Gabapentin 300 mg.; fish oil; ate dinner w/ wife and remarked how I "used to cry after eating but haven't done that in a long time." Put this info in journal.

7:00: Electrical pulses in body; urges to move jaw; felt okay though and watched psych drug withdrawal positive videos, then played Wordscapes on phone. Noted that it was very hard on the eyes and knew my brain might "pay for it later" (screens are taxing on my brain). 

8:00: Tired, wanting to lay down; feeling good/hopeful despite ongoing visual perception problems (e.g., cat walking toward me felt threatening).

9:00: Tried to lay down. Craving Klonopin dose. Legs felt rigid/trembling. Began feeling like energy of air was rippling through me. Humming sounds of electricity. Began early feelings of terror that started escalating more and more.

10:00pm-12:00am: Tried distracting myself by texting family, using aromatherapy spray; body more itchy; legs burning and restless; terror; hallucinations; feeling electrical energy in waves; fearful of falling asleep; felt rage and sudden splitting headache

 

12:00 am 3/6/19: Took Klonopin .5mg. (Overwhelmed by impending psychotic feelings). Wife came to bed and tried to help me fall asleep by holding my hand and saying prayers of protection.

12 am-5 am:  Broken sleep. Kept waking with feelings of unreality/terror/being penetrated by electricity. Felt like electric blanket was scary/electrical waves were harming me. Headache/rage somewhat better.

5 a.m.: Burning, restless legs. Kicking legs in bed. Kept sitting up, rocking, feeling in terror and utterly alone. Everything felt unreal. Clung to wife in bed.

6 am:  Got up with wife's alarm and made coffee. Still felt (and continue to feel) like things are unreal and that if I can't find right Klonopin dose, I will have psychotic break.

7:00 a.m.: Thought I saw a bug crawling across floor but it wasn't there.

 

[delsol]

I feel it is important to note that the hallucinations are especially a result of Klonopin withdrawal. During AD withdrawal, I'd get some feelings of abject terror and sometimes feel like evil was surrounding me. But it was shorter lived and did not involve terror of my electric blanket or visual hallucinations. This is a whole new level of terror. What's scary to me is that I'm back to taking 5 mg. and am having withdrawal hallucinations. I guess I really hurt my progress by stopping/starting/stopping/starting the Kpin. 

 

I'm also afraid any dosage adjustments are not going to help and that I will end up on a psych ward forever, losing everything I ever had. I know this is "doom" thinking and am trying to not go down that path but it feels real.

[delsol]

I feel it is important to note that the hallucinations are especially a result of Klonopin withdrawal. During AD withdrawal, I'd get some feelings of abject terror and sometimes feel like evil was surrounding me. But it was shorter lived and did not involve terror of my electric blanket or visual hallucinations. This is a whole new level of terror. What's scary to me is that I'm back to taking 5 mg. and am having withdrawal hallucinations. I guess I really hurt my progress by stopping/starting/stopping/starting the Kpin. 

 

I'm also afraid any dosage adjustments are not going to help and that I will end up on a psych ward forever, losing everything I ever had. I know this is "doom" thinking and am trying to not go down that path but it feels real.

[delsol]

Daily notes, continued, for 3/6/20

 

9 a.m.: Talked to friend on phone who is also going through AD/benzo withdrawal. 

10:00 a.m.: Talked to my mom and admitted to her about the hallucinations. She is worried and the conversation was stressful. I felt more terror after hanging up.

11:30 a.m.: Took fish oil, Vit.D., 300 mg. gabapentin. Whole house feels filled with terror. I felt terror taking a bath.

12:30 p.m.: Got ride and made myself go to therapy group. Felt dark black spots inside head and forehead; felt like if I closed eyes I saw dark images; more terror. Skin burnng. Legs stiff.

1-4 pm: Therapy group; I always feel better around others. But I sometimes saw black images behind eyes. It feels like a black plug in my forehead. Terror ongoing; feelings of intense unreality. Feeling like I am going crazy.

5:00 pm: Took bus home; cars whooshing and whirring; whole world feels like it's terrifying; couldn't wait to get home.

5:30 pm: Made myself some green tea and am burning a candle and some sage. Reading AD/benzo withdrawal forums. Trying not to freak out. Wife will be home soon and that feels comforting. Hearing heater going sounds like threatening noise. I am not inherently psychotic. This is withdrawal. This is withdrawal. This is withdrawal. This is my brain, it is not me... 

[Rozon1]

hey, @delsol what type of hallucinations are you having? Do you mind describing them to me?

[Shep]

13 hours ago, delsol said:

Daily notes, continued, for 3/6/20

 

Going forward, please write out 24 hours of notes in one post. It gets confusing having it split out like this and I'm afraid we may miss something. Thanks. 

 

23 hours ago, delsol said:

When I tried spacing out Kpin, I'd try and do .25 in the morning (exact time I'm not sure) and .25 late afternoon, such as around 5 pm. This dose schedule of splitting into .25 did not make me feel like I was getting much Kpin at all. Admittedly I have not always been the best at taking my Kpin at exact times. When I was on nortriptyline, I always took it before bed because it helped me sleep, and gabapentin I need to get on a schedule but it's usually with breakfast then again at dinner.

 

I've copied this from your benzo forum thread so that all mods helping out here will be aware of how splitting Klonopin out affected you in the past. 

 

Questions:

• does the gabapentin make you sleepy? 
• have you ever taken Klonopin at night for sleep? Would that be an option now, instead of taking it at 3 or 5 in the morning?

                 

[manymoretodays]

4 hours ago, Shep said:

Going forward, please write out 24 hours of notes in one post. It gets confusing having it split out like this and I'm afraid we may miss something. Thanks. 

 

Yes, please post 24 hours.  I don't even see your Klonopin listed in your last set.  And just see one dose of the gabapentin.

Here's my previous post around how to do, and the whys to do, as well:

And yes delsol, these are WD symptoms and not you!  It sounds like you are getting some kind support from your partner.  And yes, our Mum's will not always be able to handle some of our symptoms......that has occurred with me as well.

 

Best, L, P, H, and G,

mmt

[manymoretodays]

Hi delsol,

How are you doing?