MNgal1960: need to get off of 3 meds

[Happy2Heal]

1 hour ago, brassmonkey said:

Even when tapering it's a good idea to refill your prescriptions on a regular basis (usually every 30 days) as the refills become available.  This way a person can build a back log of tablets because the taper causes them to use the drug at a rate that is slower than the prescription calls for.  Having a back log supply of tablets makes is so you don't have to rely as much on the doctors, the medical establishment and can more easily control brand changes.  By the end of the third year of my taper I had a big enough back log to last the rest of the five and a half years with a huge supply still in reserve.  It's a very good practice to help us regain and maintain control.

 

 

oh yes very good advice!

I just worry if the drug is still effective after a long period of time. I get the liquid lexapro and was thinking that I'd need to toss out anything that is a year old....

or, alternatively, use it to taper, assuming it's not as strong as it was originally, I could take the same dose and it would have less effect. There's no way to know for sure, how *less* effective it might be, though. I mean, I could take, say just for example, 1mg when it's a fresh bottle, but the same 1mg when it's older, might only say, 90% effective, but then degrade rapidly to 50% effective or less.

 

so I think I just talked myself out of using old liquid lexapro to taper, hahaha

 

[MNgal1960]

Wow, brassmonkey! I'm jealous. My supply is paltry compared to yours!

[MNgal1960]

Ya know, I don't think I have CRPS at all. At first they said small fiber neuropathy and then CRPS. I think they are clueless. After I get off the bento, I'm going to get off the gabapentin. I don't think it's doing a thing for me. Well, if I get a pain spike and I take a large dose it make me groggy enough to sleep through the pain. Otherwise, I think I am tolerant to the dose and it's doing nothing.

[MNgal1960]

Still plugging away at reducing the Valium. Seems like this is going to take forever. Main symptom is extreme fatigue. Can't take care of myself any more. Can't focus to measure my meds. I sometimes wonder if somehow the Seroquel is actually causing this fatigue. I only take a small dose at night and it used to be worn off by mid morning, but now I'm tired all the time. Wish I knew for sure. 

[Carmie]

Hi MNgal, 

 

How are you doing? Sending hugs🤗

 

 

[MNgal1960]

Hi, Carmie. The fatigue is less relentless, so I'm getting things done. I'm over on the benzo board when I remember how to log in! I just figured out how to check my threads again. I have terrible memory problems. My doctor says it's the meds. I started my taper again on January 1st. It was OK the first month but is getting rough. My doctor wants me to taper faster now. I have no idea why the change of tune.

 

I see you're down to 7.5mg of Q. That's wonderful! 

 

MN

[Carmie]

Hi MNgal, 

 

I’m glad you’re getting more things done and you figured out how to check your threads again. Yes, this journey is all about windows and waves, up and down, up and down, like a roller coaster 🎢🎢🎢. One day the ride will stop and we won’t know ourselves. 

 

Could you please update your signature. Thank you.💚

[MNgal1960]

Oh, woops. Will do! If I can figure out how. 😉

[MNgal1960]

My gabapentin brand was discontinued. Now have some of old and some of new. Tried one capsule of the new brand last night and got bad neuropathy flare for a couple of hours this morning. It subsided about an hour after I took the new brand morning dose. I really hope that was a coincidence because I have to change completely to the new brand over the next 2 months. Will try agin next week.

[Carmie]

Hi MNgal, 

 

I’m sorry your new brand of gabapentin caused a flare up. It’s terrible when they discontinue brands. All these meds affect our brains and then they take them away and expect us to deal with the fallout. It certainly is a corrupt system. I hope it was just a coincidence that your symptoms flared. Please keep us updated as to how you go when you try it again. 

 

Sending hugs🤗

[MNgal1960]

Sorry a little slow to update. It did seem to be a coincidence.😀 I've not had a bad flare since that first one, only little blips such as are typical in my life. I've been subbing in the new brand of gabapentin one dose at a time over the course of several weeks. I'm up to half my doses in the new brand.

Edited April 3, 2019 by Carmie
Removed white space

[MNgal1960]

I'm doing well with watching/following little or no news every day. I find it helps reduce my withdrawal symptoms. Less stress. It's becoming more of a habit and I'm not having the urge to click on the news as a way to fight boredom like I used to. 

[Carmie]

I’m glad to hear you’ve had no more flare ups MNgal💚

[MNgal1960]

Thanks, Carmie. 🙂

[MNgal1960]

Getting very near the end of my first drug. And I'm nervous! 

[ChessieCat]

Wow, that's great to hear that you have nearly completed a taper.  Nervousness is to be expected.  It's probably a mixture of being scared and excited.  However, if you want to get off the drug, then it is inevitable that you are going to have to stop taking it at some point.

 

Best thing is to remember that you have tapered and have done it as carefully as you could.

 

Maybe use this time before jumping off the drug to prepare yourself mentally and keep reminding yourself of the positives and try and stay as calm as possible about it so you don't feed the fear.

[MNgal1960]

Thanks, Chessie. I'm going to hold here for a few days and decide if I'm going to jump or taper down to fumes. I've made some significant cuts lately with no increase in symptoms, so I wonder if I should just jump. But it sure is a weird concept after so many years. No more syringes. No more little cards with each day's dose on the kitchen counter (my system for not messing up my microtaper). I think my brain will be telling me I'm forgetting to do something! 🙃

[MNgal1960]

On 6/9/2019 at 8:59 AM, MNgal1960 said:

I was on trazodone a few years ago for about 6 months as an attempt at a sleep aid. It never worked. I tapered off of it without much trouble. I'm sure others have tapered it successfully, too. People just naturally tend to post when they're having trouble.

 

MN

P.S. There are not details about my trazodone taper in my signature because I ran out of space and because I don't remember the details. I am getting messages asking for the details. I'm sorry, but I don't know. I did not take notes. I just remember it was not difficult for me.

[ChessieCat]

7 hours ago, MNgal1960 said:

P.S. There are not details about my trazodone taper in my signature because I ran out of space and because I don't remember the details. I am getting messages asking for the details. I'm sorry, but I don't know. I did not take notes. I just remember it was not difficult for me. 

 

The drug signature is so that we can see you drug history at a glance.

 

Please copy and paste your current signature into a post before editing it.  The information it contains is helpful so put a link to it in your drug signature.  You can copy the link info at the top right of the reply box after it has been posted.

 

We don't need the extra details, just the drugs, dates and doses so we can see the information we need at a glance and we can click on the link if we need to see more details.  Please use the preferred format:

 

Keep it simple.  NO diagnoses or symptoms please - thank you.

• details for last 2 years - dates, ALL drugs, doses
• summary for older than 2 years - just years and drug/s

Account Settings – Edit a signature

 

Edited June 22, 2019 by ChessieCat

[MNgal1960]

I'm sorry, I don't understand what ChessieCat is saying about links and things. And I am too tired to figure this out right now.

 

 

[ChessieCat]

MNgal1960 posted this in her Benzo topic:

 

8 hours ago, MNgal1960 said:

 

I am just checking back in to encourage anyone reading this to not give up! It's been over 11 months since I jumped from the benzo. I am so much better. Before the pandemic, I was doing really well, reconnecting to community, making plans. Now I am living alone, lost my new connections, and the solitary confinement feeling is kind of getting to me. But, I am still so much better. I've managed to taper away half of my gabapentin and am now reducing my Seroquel. The tapers are somewhat difficult but not terrible and everything is easier with that awful benzo gone.

 

 

I've bolded one sentence so that it stands out for other members.

 

That's really great news.  And yes the covid situation is affecting many people, probably in different ways, but affecting them all the same.

 

Please continue to let us know how you are going with tapering the other drugs.

 

Now that you are off the benzo, please post here in your Introduction topic.

 

 

Edited July 17, 2020 by ChessieCat

[MNgal1960]

Here I am again. I got down to half a Seroquel tablet quite awhile back. I decided to hold there and taper the gabapentin. I tapered it for a couple of months and had to reinstate due to a cascade of symptoms and my bizarre insomnia returning.

 

Found out I will not get a new lease this spring (change of ownership) and need to pack up and move. I decided I need to sleep and function to do that. Reinstated. Reinstating helped only somewhat. The insomnia is cooking my brain. I can't pack. I can hardly figure out what to eat. I can barely get dressed. Took forever to find this forum and this thread. Thank heavens my computer remembered my logins!

 

I have a new primary NP because the one who saw me through my V taper moved away. She sent me to psych. Getting double teamed now to be put on an antidepressant that will solve all my problems. I keep saying I just want to sleep. I get all the usual stuff about how I am missing out on life and they are the experts and the drug will help you. They are wearing me down. 

 

The psychiatrist said, "The treatment for anxiety is antidepressants." I said I just want sleep. I think the low-dose Q has burned out. What else is there? And we argued and then she agreed to give me something for sleep, which was mirtazapine. Also told me to just CT quit the Q. I did not do that. Tapering the Q to where I am was painful. Both docs said, "Don't worry, it's not a benzo and you're on a very small dose." They think I am on 1 1/2 tablets but I have tapered to half a tablet. I'm scared they are going to jerk me off the Q. (I am typing the letter q, upper case but my screen looks like an O. It's a q.)

 

I read my primary's notes. She said I have tangential thinking. Yeah. I am having a hard time focusing. Sorry if I am wandering.

 

Of note: I was put on a benzo for insomnia. I can fall asleep no problem. I am so tired. But I jolt awake again after a few minutes. There seems to be some kind of switch in my brain that flips as soon as I enter sleep, flip, jolt of adrenaline, I'm awake. Fall back asleep. Jolt stronger and stronger as the night goes on until full blown panic attack. This was before I ever took any of these drugs. One psych said it was from PTSD event that occurred years before. I guess that's what they are assuming now.

 

My new primary nurse prescribed propranolol to counteract the adrenaline jolt. It works somewhat. I still wake up but I am not in full blown panic any more. Knock wood. But it's yet another drug. I was on NONE before. Now I'm on 3.

 

I really want off these drugs. I was doing better after I recovered from my benzo taper. Much better. Maybe I was overconfident. Or maybe the Q burned out. Did I taper the G too fast? Hard to figure it out when I'm not sleeping. Don't know if the M will really give me sleep and then I can figure it out or if it is just going to set me back even further. 

 

I am really sorry that I can't organize this better. I just don't have the brain power right now. I need to figure out how to update my signature. Maybe later.

 

Now on:

1/2 tablet Q (whole is 25mg, splitting as best I can)

100mg gabapentin 3 times/day

20mg propranolol at night

[MNgal1960]

Oops, I abbreviated mirtazapine as M but never wrote it out. Hard to spell! When I asked for sleep, that's what the psych said to take. Mirtazapine.

[Shep]

20 hours ago, MNgal1960 said:

I have a new primary NP because the one who saw me through my V taper moved away. She sent me to psych. Getting double teamed now to be put on an antidepressant that will solve all my problems. I keep saying I just want to sleep. I get all the usual stuff about how I am missing out on life and they are the experts and the drug will help you. They are wearing me down. 

 

 

MNgal, please don't do this to yourself.  You're letting them wear you down. I wish you could develop a sense of anti-psychiatry about you and realize that psychiatrists are there for social control (psychiatry isn't and never has been a legitimate form of medicine) and regular doc's and NP's are only doing what they've been told is safe to do from the "experts" of these drugs (i.e. (psychiatry). 

 

Go to them with the intention of getting your drugs to taper. That's all they're good for when it comes to these drugs. 

 

Expecting them to evolve is what's wearing you down. 

 

20 hours ago, MNgal1960 said:

Here I am again. I got down to half a Seroquel tablet quite awhile back. I decided to hold there and taper the gabapentin. I tapered it for a couple of months and had to reinstate due to a cascade of symptoms and my bizarre insomnia returning.

 

 

20 hours ago, MNgal1960 said:

My new primary nurse prescribed propranolol to counteract the adrenaline jolt. It works somewhat. I still wake up but I am not in full blown panic any more. Knock wood. But it's yet another drug. I was on NONE before. Now I'm on 3.

 

Bouncing around and adding in drugs is going to lead to kindling. When you say, "I was on NONE before," when  were you on none? 

 

Please be very careful with any change. Also dealing with having to move is very stressful. If you have a friend or family member or if there's a government agency or the like in your area that can help with this, please put energy into getting folks to help out, as much as possible. 

 

20 hours ago, MNgal1960 said:

Now on:

1/2 tablet Q (whole is 25mg, splitting as best I can)

100mg gabapentin 3 times/day

20mg propranolol at night

 

Please post the times of day you are taking these.

 

Some thoughts:

 

A large part of your insomnia problem is you're on a cocktail of sedating drugs, which can lead to paradoxical reactions. You're also dealing with possible interactions:

 

Drug Interaction Report - seroquel, propranolol, gabapentin

 

You've lowered your drug burden overall, but at the expense of bringing in another drug. It may be time to set up a new game plan. I don't know if your post is an "FYI update" post or if you're here asking for advice, but these are just some thoughts.

 

[MNgal1960]

Hi, Shep! How are you? Yes, I could use some advice.

 

I was not on any meds when the insomnia started in 2012. This whole drugs mess is all about sleep. Well, it is to me. Not to the doctors who believe these meds cure things. 

 

I slept some last night so am able to think again. I can go days with almost no sleep and then I am no longer thinking straight. And then I get worn down. And I don't even want to try any more. Death looks good. It would be rest.

 

I take 100mg gabapentin 8:30AM  3:30PM  11:30PM

 

I take 1/2 tablet Q at 10PM

I take propranolol and melatonin at 11PM

 

I go to bed at midnight. That's how long it takes for the Q to kick in. Except it doesn't seem to be really kicking in like it used to.

 

I pushed the Q so late because I find it does not work unless my stomach is empty. I need many hours between supper and the Q.

 

I don't remember why I chose the other times for my night meds. I know I read things online and made a plan. But I have no memory of the details. My memory and thinking have been poor since my first benzo. I'm disappointed that they haven't improved much yet.

 

All these meds were prescribed to help directly with sleep or pain that was interfering with sleep. No one has been able to get to the bottom of why the sleep startles happened in the first place. So they throw drugs at it. Believe me, I tried everything under the sun before I took a drug. When I was given a benzo, I was told it was a sleeping pill. I didn't know better. The drug nightmare that went on for so many years kept me from every getting to the bottom of the sleep disorder. I couldn't even get a sleep study. Just drugs.

 

Now I finally found a provider who is willing to do a sleep study and it's a pandemic. And I need to move. Happily my kids are now grown and can help me move. I have stopped trying to pitch and pack (huge downsize from house to apartment) and am just trusting they will move me because I can't do it.

 

I am not taking the 15 mg mirtazapine that was just prescribed. I haven't even picked it up. My thought is it might work for sleep and enable me to taper off of the Q. I really want off of that Q. But I looked up stuff about mirtazapine and I am suspicious. It looks like something that builds up and gives you steady state to treat anxiety and depression, exactly what I told the psych I didn't want. At the moment I am mad at her. But, you are right, I need my scripts so I'd better not burn that bridge.

 

My first thought about the sleep mess was I tapered the Q too low. My other thought is that maybe I am experiencing waves and windows from my gabapentin taper. If so, it's just going to take time, right?

 

[MNgal1960]

About the cocktail thing, the insomnia preceded the drugs and is better, not worse on them. It got worse as I tapered. It got better when I added the propranolol which was to block the effects of adrenaline on the heart. I was being jolted awake with a racing heart.

 

There's my daughter at the door. Will have to come back later.

 

Thank you!

[Shep]

15 hours ago, MNgal1960 said:

I take 100mg gabapentin 8:30AM  3:30PM  11:30PM

 

I take 1/2 tablet Q at 10PM

I take propranolol and melatonin at 11PM

 

I go to bed at midnight. That's how long it takes for the Q to kick in. Except it doesn't seem to be really kicking in like it used to.

 

Are you getting any sedation from the gabapentin earlier in the day when you take the morning and afternoon doses? 

 

Or are you already feeling a bit sleepy after the propranolol and the melatonin that you take at 11 PM, before you take the last gabapentin at 11:30 PM? 

 

Just trying to see which drug truly is contributing to you getting any sleep at all. 

 

 

 

[MNgal1960]

I don't feel sleepy from the gabapentin on such a low dose. In the past I took a much higher dose when my pain was high and that made me sleepy. I think I am habituated to the gabapentin and it is doing nothing. That's why I tried so hard to get off of it.

 

No to the propranolol and melatonin, too. When I learned that propranolol inhibits melatonin, I added the melatonin. Neither make me unusually sleepy. 

 

The Seroquel (with its strong antihistamine properties) has been my sleep med since I started the Xanax withdrawal. It used to start to make me sleepy about 1 1/2 to 2 hours after I took it. Now it doesn't seem as strong. I get only mildly sleepy. But I am at half the Q dose I used to be. 

 

I go through my night routine and eventually I get sleepy and fall asleep. And then I startle awake again. Over and over. With the propranolol I no longer get into a heart-racing panic like I used to. So it is working as a beta blocker. This makes the startles less severe. Then I can usually fall asleep for a couple of hours around 3 or 4 AM. Without the beta blocker the startles got worse and worse until I had to get out of bed and that was the end of the sleep for the night. So now I am surviving but it is miserable.

 

Happily, I have had only mild startles for the past 2 nights and have fallen deeply asleep much faster. I still woke up several times (typical light sleep and bathroom trips I have had for decades) but then I fell back asleep without the startling. With 2 nights in a row of getting through a couple of sleep cycles, I can think better and will get stuff done today. 

[MNgal1960]

Thank you for your reminder about psychiatry being fake. I needed to hear that. It's lonely battling the system. 

 

I am less distressed by the doctors now that I am off the benzo over a year. But when I don't sleep my brain gets very muddled.

 

For anyone reading, I had this sleep disorder before I took the benzo/quetiapine/propranolol/gabapentin. In spite of this sleep illness, I have managed to get off the benzo and cut my Q and G in half. And I am feeling/thinking much better without all that drug in me.

[Shep]

21 hours ago, MNgal1960 said:

Happily, I have had only mild startles for the past 2 nights and have fallen deeply asleep much faster. I still woke up several times (typical light sleep and bathroom trips I have had for decades) but then I fell back asleep without the startling. With 2 nights in a row of getting through a couple of sleep cycles, I can think better and will get stuff done today. 

 

This is a great update, MN. Sounds like you're stabilizing. 

 

21 hours ago, MNgal1960 said:

For anyone reading, I had this sleep disorder before I took the benzo/quetiapine/propranolol/gabapentin. In spite of this sleep illness, I have managed to get off the benzo and cut my Q and G in half. And I am feeling/thinking much better without all that drug in me.

 

A sleep "disorder" doesn't really mean much, as it's a symptom, not a disorder. There generally is an underlying cause, such as hormonal, nutritional, physical pain from an actual medical condition, lack of exercise, lack of purpose, grief (doesn't have to be a death, but some form of loss), loud neighbors, etc. Or a combination of a bunch of stuff. 

 

If it was situational and the situation has resolved, then a lot of what you're dealing with may be withdrawal related. Hard to say. 

 

But framing it as a temporary state may help you sleep better. Just a thought. 

 

[MNgal1960]

Thanks, Shep. I think the sleep problem is a mix of things. It started after menopause. Most docs think it's psych and push me to go there. Then psych sends me to sleep then sleep sends me to psych. 

 

I would like to get rid of the propranolol ASAP. I'm not sure whether its best not to rock the boat as I get ready to move or to get rid of a drug that I may not need and haven't been on long. Docs said propranolol is something you can just quit when you want to. Have you ever heard of anyone having trouble getting off of it? As near as I can tell, the dose I am taking is less than the dose that is used to taper people off of it. There's more info I wish I could read but it's behind a paywall .

 

One new thing, I have been having muscle twitches and jerks in the morning (myoclonus). I used to get this very occasionally during tapering or even during extreme stress. It is happening every morning now. I can't remember when that started, but not very long ago. Maybe it's a sign I need to hold or maybe it's a sign I need to get rid of the propranolol. Wish I knew.

[Shep]

21 hours ago, MNgal1960 said:

I would like to get rid of the propranolol ASAP. I'm not sure whether its best not to rock the boat as I get ready to move or to get rid of a drug that I may not need and haven't been on long.

 

You don't need? You've repeatedly posted about how this drug is helping you.

 

On 1/23/2021 at 12:09 PM, MNgal1960 said:

My new primary nurse prescribed propranolol to counteract the adrenaline jolt. It works somewhat. I still wake up but I am not in full blown panic any more.

 

On 1/24/2021 at 3:08 PM, MNgal1960 said:

About the cocktail thing, the insomnia preceded the drugs and is better, not worse on them. It got worse as I tapered. It got better when I added the propranolol which was to block the effects of adrenaline on the heart.

 

On 1/25/2021 at 10:37 AM, MNgal1960 said:

With the propranolol I no longer get into a heart-racing panic like I used to. So it is working as a beta blocker. This makes the startles less severe. Then I can usually fall asleep for a couple of hours around 3 or 4 AM. Without the beta blocker the startles got worse and worse until I had to get out of bed and that was the end of the sleep for the night.

 

[MNgal1960]

The past five days I have had less and less of the sleep startles. I am still waking frequently but it is more normal waking up. Not always the jolts and not as often. I am hoping that if I get back to the way I was before, I can get rid of the propranolol.

 

I am still waiting to hear if I can get a home sleep study, and I still don't have my mirtazapine script because the psychiatrist took 4 days to send it in and then sent it to the wrong pharmacy. I don't even know where it is now. It sure makes me concerned about relying on behavioral health to keep me supplied with this drug they plan to hook me on. Sheesh.😝 

 

 

[Shep]

9 hours ago, MNgal1960 said:

It sure makes me concerned about relying on behavioral health to keep me supplied with this drug they plan to hook me on.

 

MNgal, they are not hooking you on this drug - you're doing it to yourself.  You've been on this site for nearly 5 years. You know we don't recommend adding in drugs to "fix" withdrawal. You can't ignore the fact that you know more about these drugs then your doctor. 

 

Adding in another sedating drug is likely only going to lead to paradoxical reactions - the more you dampen down the nervous system with sedating drugs, the more it fights to stay alert. 

 

You're getting some relief with the beta blocker. I wouldn't push your limits by adding in another drug. 

 

You're in the process of moving, which is stressful by itself. I would get yourself settled into your new place and reassess where you're at in terms of withdrawal.  Some of your symptoms may be from the normal, everyday anxiety from a major life event, such as having to relocate. 

[MNgal1960]

I can't figure out the quote function, so I'm going to do it manually.

 

"MNgal, they are not hooking you on this drug - you're doing it to yourself."

 

That's pretty harsh. Maybe you think it's tough love, but I think you are completely misreading me. I explained myself to the best of my ability. I'm done.