themartian1000: introduction - help with pregabalin taper

[themartian1000]

I am a 48 year old woman. I was taking a low dose of xanax 0.025mg twice a week for insomnia for a few months. This lead to interdose withdrawal with horrible symptoms of intrusive thoughts, fear, anxiety and panic attacks. My dose of xanax was increased as my doctor didn't realize it was the xanax. I was then taking xanax 0.5mg 4-5 times a week. After about three months, I realized that it was the xanax and was told to just stop.

 

What ensued is nothing short of horror - the same as interdose except I was completely nonfunctional. I was in terror all the time with chemical fear keeping me in my bed. My husband had to take care of me, it has been horrible. I had such severe symptoms that were getting worse and not better so that by the ninth month I had to start pregabalin. Pregabalin helped a lot, and as my symptoms slowly recede, I know that I will have to embark on a Lyrica taper. I also have started fluoxetine 1mg daily. I am here for support on my pregabalin taper. I want to stabilize further before tapering, but am concerned about staying on too long. I have exited the Facebook groups because the horror stories are not helpful. The main factor that keeps me from being stable is hormone withdrawal (PMS but severe and debilitating) for which I take the small dose of Prozac. I am also newly on continuous micronized progesterone.

 

Once ready, I plan to do a microtaper, cutting 1.25% every 3 days for a total taper of 10% per month, with a 2 week hold every 4 weeks. Since I will have been on Lyrica three months when I taper, I am wondering if I can taper more quickly. If I embark on the 10% taper with 2 week holds, I will taper 2 years for a medication that I've been on a few months. I am ok with this if needed, as I want to reduce the risk of further injury to my brain. But I am also weighing the risks of being on the medication for an extended period tapering versus speeding up (a little). I would love guidance.

 

Current symptoms: chemical anxiety throughout the day 5/10, feeling heart beat much of the day 5/10, feeling like thoughts are "off" 5/10, fatigue 6/10, fears/anxiety that keep me from functioning 7/10, skin burning on and off 5/10

 

Drug history:

6/2020 - 8/2020 xanax 0.25mg nightly twice a week for insomnia

8/2020 - 10/3/2020 xanax 0.5mg daily 4-5 days a week for severe panic attacks and anxiety

10/3/2020 - stopped xanax cold turkey with horrific consequences

7/8/2021 - started pregabalin at 75mg titrating up to 350mg currently

8/1/2021 - started fluoxetine 1mg daily for PMS

8/1/2021 - started micronized oral progesterone 300mg daily for severe PMS

 

Edited August 21, 2021 by manymoretodays

[Altostrata]

Welcome, @themartian1000

 

I am sorry you've had this terrible experience with benzo withdrawal. Why do you want to go off pregabalin when it helps you with the benzo withdrawal symptoms?

 

On 8/20/2021 at 4:37 PM, themartian1000 said:

Current symptoms: chemical anxiety throughout the day 5/10, feeling heart beat much of the day 5/10, feeling like thoughts are "off" 5/10, fatigue 6/10, fears/anxiety that keep me from functioning 7/10, skin burning on and off 5/10

 

If you have these current symptoms, which symptoms did pregabalin help? Did any new symptoms emerge when you increased pregabalin?

 

What is your daily drug schedule (o'clock), with dosages? Are your symptoms better or worse at any particular times of day?

 

Here are Tips for tapering off Lyrica (pregabalin)

 

[themartian1000]

Thank you so much for your kind reply. I am planning to taper off pregabalin when I am feeling well, but definitely not before! I am getting closer to this date.

 

I suppose I’ve been drawn into the horror stories and shouldn’t let them dictate my treatment. They’ve made me quite afraid to stay on pregabalin for very long. 
 

Currently, I set an alarm to wake at 3:30am to take 150mg pregabalin. I do this to try to reduce the morning symptoms, which it does. I take 75mg at 11:30am, 25mg at 6pm and 100mg at 9pm. I have the doses set up this way to match the severity of symptoms and also to keep blood levels of pregabalin above a certain level. It seems to work after much trial and error. 
 

Healing is so slow - it’s scary!

[Altostrata]

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

 

Pregabalin has a half-life of less than 7 hours. It's very possible those symptoms you get at 3:30 a.m. are interdose symptoms from the 9 p.m. dose wearing off. 

 

What is your usual bedtime?

 

What times of day do you take your other drugs, with their dosages? Please be aware that Prozac and steroids may have their own adverse effects. How has introduction of progesterone affected you?

 

Since you're juggling several drugs, you may wish to keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day -- how you feel before and after taking each drug, and your symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right. This can show if your symptoms are adverse effects from one of your drugs.

[Altostrata]

Do you have a peak of symptoms around 3:30 a.m.? What are those symptoms?

[themartian1000]

I became so overwhelmed around the time that I created this account and had a hard time figuring it all out. However, since then, i've had so many recommendations to seek help here, so I hope that I can return after this long hiatus. I'd like to answer your questions and update everything. I have not figured out how to add to my signature. When I click on the link, it does describe it, but it's not clear how to get to the signature section and do it. But, that said, i will get it all done. 

 

Much has changed since my registration in August. I felt truly horrible, even on the pregabalin and became desperate. My doctor increased my dose to the max, 600mg, and when that didn't work, I really didn't know what to do. I then evened out all the doses to 125mg every 5 hours or so. It was and is kind of a pain, but it evened me out and I feel at least partially human. 

 

I then proceeded to microtaper off 120mg with minimal withdrawal for the first 100mg. The last 20mg were much worse. It could be two things. First, I sped up a bit. I got overconfident and though I could. Second, the longest break I took in 2.5 months was 2-3 days. I probably need more like a week or two off every so often (I am not sure how often, but I want to do it before I feel awful). 

 

I think that biggest problem I have is that the groups available for helping with pregabalin really push the 10% drop rule. With these drugs, it doesn't seem to work well. People become disabled for days and take weeks to recover. This feels like brain trauma to me. Then they repeat over and over. I wonder why there isn't more of a push to do 2% a week or 5% every two weeks or, like me, 0.5% a day five days a week. It's confusing and makes it hard because I have no one else doing a slow microtaper to even taper with or taper after. 

 

So, right now, I am at 480mg. I don't have notable side-effects but I take it in 5 doses. I am now stuck because I either rushed that last 20mg or I didn't take enough breaks (or both). 

 

I am hoping for support with the microtaper method, since it is my only choice (bigger cuts leave me non-functional). I know it might take years, and that's ok. I just want to heal my brain. 

 

Adding signature as soon as I figure it out 🙂 But for now, I'll do it manually:

7/1/2020 - 10/3/2020: xanax 0.25mg x 3 months, not daily, horrible interdose withdrawal led to cold turkey removal from drug, 10 months of being non-functional. I just realized that this was mental and some physical akathisia (hence the 10 miles of walking and 20 pound weight loss)

7/1/2021 - current: pregabalin various doses from 50mg daily (about 7/1/2021 - 8/1/20201) all the way to 600mg daily (11/1/2021) and now back down to 480mg (2/15/2021) daily

No other medications now or in the past

 

[ChessieCat]

3 hours ago, themartian1000 said:

I have not figured out how to add to my signature. When I click on the link, it does describe it, but it's not clear how to get to the signature section and do it.

 

Please keep your drug signature simple because we need to see the information at a glance and not have to read through a lot of text.  We only need to see drug name, dose and the date of that dose change. 

 

If you wish to keep the current information, copy and paste it in as a post here in your Introduction topic BEFORE you edit the signature.

 

Click on the following link which will go directly to your signature.  Type/edit the contents of the text box and remember to click Save before closing the page.

 

Account Settings – Create or Edit a signature

 

And the instructions if you need more help:

 

Instructions:  Withdrawal History Signature

[ChessieCat]

Please make a post telling us when you have changed your signature so that we get a notification.  Thank you.

[themartian1000]

Done! Thank you for the feedback. Hopefully this is more what you are looking for. 

[Altostrata]

Hello, @themartian1000

 

I am sorry you've had such a rough time with this. To taper, are you making a liquid from the pregabalin capsules?

 

What is your symptom pattern now? Please keep daily notes of times o’clock you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and your symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time o’clock on the left and notation (symptom or drug and dosage) on the right. 

[MerryJayneFriday]

Hello @themartian1000 and welcome. In glad you are here!  Forgive my slowness as I get used to the new group. 

I really do like the advice given about tracking your symptoms here. I did keep a journal but I went by the 10 percent recommendation for most of my 4 year taper. When I got to the end I did do micro reductions and they worked much better then. 

The people Here probably have more experience with the micro reductions but I wanted to add you might want to just stick where you are and be good to yourself for a while. Since you're not in a hurry do take some time to heal. If I can help holler XO 

MJF

[themartian1000]

I am going to try to track things here. My days for a while have been fairly consistent and go something like this:

 

3:45am: (alarm) pregabalin 96mg then go back to sleep

7am: wake up, feel ok, usually a bit tired, small breakfast - oatmeal

8:30am: pregabalin 96mg, still feeling ok but a bit more anxiety

Noon: Usually anxiety and depression starts, not sure why. Have lunch (usually a protein and veg). This was intolerable before pregabalin, so pregabalin actually made it better

1:15: pregabalin 96mg, not much change in mood

2pm: go for a long walk, usually outside if weather permits. This is a break from my computer where I work

6pm: take pregabalin, have dinner (protein and veg - eat pretty healthy)

7pm: usually feeling better by evening, sometimes quite tired

11pm: pregabalin 96mg, usually fall asleep without much trouble

(Total dose: pregabalin 480mg, started at 600mg three months ago, total time on about 8 months now)

 

Overall, the days remain the same without a lot of change and have stabilized here again after just three days of holding. Mood is mostly a bit low and anxious, but worlds better than before pregabalin. I don't feel any direct effects from pregabalin at all (I don't feel it when I take it). Of course, I DO notice when I taper it, so I can only tolerate cutting a few milligrams at a time or depression and anxiety sky rocket to the point where I cannot function at all. Even increasing cuts from 2mg to 4mg was terrible (even though I take so much!)

 

I am struggling because I don't know how long to hold. Due to the benzo cold turkey, I haven't felt well in over 16 months. I've never felt well tapering. I am not entirely sure where my "withdrawal normal" is either, as I do slowly change (I think heal but still longing for that feeling of being "me"). 

 

So that's my struggle. When do I start tapering again? How do I know? I fear I could hold forever and never feel well. Or maybe worse, will the drug turn on me? I don't have side effects currently that I know of. I don't have memory issues, brain fog, mood swings, swelling, blurry vision. I guess I'm lucky in that regard. 

 

Also, I know that the five times a day dosing is odd. It ended up that way because big doses were giving me problems, so I just split them up until they were ok (and that was 125mg a dose initially 3 months ago). I know, too that waking at 3:45am as a result of this is less than ideal. But, to be honest, I am afraid to change anything. If a 2mg cut hurts, how much would changing my dosing hurt? I'm not sure 😞

[ChessieCat]

5 hours ago, MerryJayneFriday said:

I wanted to add you might want to just stick where you are and be good to yourself for a while. Since you're not in a hurry do take some time to heal. If I can help

 

I agree with MJF on this.  Even if your brain does not need it, sometimes "we" need to have a break from tapering.  Just enjoy some time without having to worry about it.  If we become "battle weary" we might get impatient and start to hurry things along.  You might find setting a date, eg in x months time, when you will re-assess the situation.  That way during the x months you will not have it in the back of your mind all the time.

[themartian1000]

These are such great responses and great advice. I am struggling with it because I guess when you always feel bad anyway, it's like, why not just taper? It's hard to imagine it getting better. But then again, maybe it will? My fear, of course, is that it gets no better and the time is "wasted". Ugh! What a process!

[themartian1000]

I am wondering how long people hold before tapering again. I am feeling better, but not "myself". But I don't know that this will happen for me. I think I am going to do the four year plan though, because I just don't want to go back to a bad place. 

 

Any super slow taperers have any encouragement?

[ChessieCat]

Why taper by 10% of my dosage?

 

Brass Monkey Slide

 

Dr Joseph Glenmullen's WD Symptoms Checklist

 

See:

 

Stability

 

WDnormal

 

And Brassmonkey talks more about it here:

 

tao-of-the-brassmonkey

[ChessieCat]

11 minutes ago, themartian1000 said:

Any super slow taperers have any encouragement?

 

It is important to listen to your body/symptoms.  The idea of tapering is to get off the drug with minimal discomfort and be able to live life as normally as possible.  To help me be patient I would remind myself that my brain had got used to getting the drug and that I needed to sneak it away carefully, so it was my brain that needed and dictated the rate I could get off.  It had nothing to do with how determined or strong I was as a person.

[themartian1000]

I absolutely love this attitude and approach and thank you times a million. This is my instinct, but it is not the way it is done in the gabapentinoids groups. I am going to follow you all - away from those groups (which have relocated here), and take guidance here. Just out of curiosity - since I had major brain trauma, slowly improved by pregabalin, is it possible that I am just tapering too soon. Perhaps no tapering for a bit it the answer (well I know no one has the "answer") but in your opinion and based on your experience here?

 

[ChessieCat]

Generally, and I cannot speak to your situation, it is better to hold for longer than to risk reducing too soon. 

 

Also understand that you do not have to make a full 10% reduction.  The 10%/4 week taper is only a guide. 

 

If you are feeling unsure about whether you are ready to make a reduction this can cause anxiety which, if you make a reduction and have symptoms, can make it hard to know whether the symptoms are from the reduction and/or the anxiety, and sometimes when this happens a person can end up becoming even more anxious and the symptoms can worsen even more because they are scared and confused.  And I have seen members panic and make bad decisions when this type of thing happens.

 

Something that I suggest to members who are anxious but feel that they may be ready to taper is to make a small test reduction, eg reducing by 1%.  If you feel okay after this small reduction you may feel less anxiety and also more comfortable and confident to make a larger reduction the next time.

 

SA strongly encourages members to learn and use non drug coping techniques:

 

Non-drug techniques

 

I found this diagram very helpful in understanding how anxiety can affect the body.  From https://www.getselfhelp.co.uk/anxiety-self-help/

 

 

 

[themartian1000]

Thank you everyone for the advice. I have read the brass monkey micro tapering guide. The drops are still too large. I can do daily liquid microtapering and that is all. Are there others doing this as well. I sure would like some company and support. I take 1-2mg off a day. It is tiny since I am at 450mg now (but I was at 600mg!) 

[FionaM]

Hi Jean

i am also micro dosing very slowly as I still want to be functional.

I do need to increase my weaning off to 5% taper but listening to my body as well.

like you I found it difficult to find responses or threads but will stay on here ( as well as other forums) and keep in contact.

you are doing well in your taper keep it low and slow !

Fiona M

[MerryJayneFriday]

Hello @themartian1000I wanted to say that I've seen many folks do the micro reductions thingy and I even used it at the end of my taper and it worked good. Whatever works for you!  And remember, just like the guy that peed in the ocean, every little bit helps. Every drop, no matter how small is a drop closer to being done. Hang in there, so proud of you!

 

MJF

[themartian1000]

On 3/11/2022 at 1:40 AM, FionaM said:

Hi Jean

i am also micro dosing very slowly as I still want to be functional.

I do need to increase my weaning off to 5% taper but listening to my body as well.

like you I found it difficult to find responses or threads but will stay on here ( as well as other forums) and keep in contact.

you are doing well in your taper keep it low and slow !

Fiona M

When you microtaper at 5%, is that 5% a month or 5% at a time? I changed to 1mg drops, and when daylight savings came and I had to adjust times for my doses (since I take right before bed I had to change it), I've felt kind of awful! I am doing about 7-8% per month.

 

How are you doing?

[themartian1000]

Hello friends, I am just looking for support. I've made it to 409mg from 600mg of pregabalin, and while I am proud of this, I am also really scared. 

 

I taper at 1mg a day and hold when I feel bad. I know it will take a long time and I am fine with that. I am wondering if a slow taper can be done while living a relatively normal life. I know that there will be bumps, but I am not sure I can make it years like this. Any hope greatly appreciated. 

[Altostrata]

We need you to do this to understand what you're up to:  Please summarize your drug and withdrawal history in your signature You may need to use a computer to do this.