Seekinghope: Gabapentin guidance

[Seekinghope]

I’m at a total loss as to what to do. I’m in the worst wave of my life which was worse than acute for me after tapering from a benzo. I feel as though I am in severe withdrawal. I am kindled and it’s to the point I can’t eat anything without having a reaction and have been unable to shower. I was in the hospital back in December and am back here again and am only worse. In some ways when I take my Gabapentin dose, it helps some symptoms and in other ways, it makes me feel horrible. I cannot get stable to taper Gabapentin. I really am at a loss as to what to do. They don’t understand here and recommended a few options for me with them being ECT, TMS, IV Ketamine and the medication that was recommended was Ritalin and Vyvanse as my levels of dopamine are low along with serotonin and norepinephrine. I had gene testing done and that was determined along with the MTHFR gene mutation, so l-methylfolate was recommended. I can’t take anything without my system overreacting. I am kindled a few times now and my dosing schedule for Gabapentin has been all over the place because I feel I reached tolerance and some days I end up taking more than I normally do. I wish I could just be placed into a medically induced coma and taken off my meds because I don’t know how I’m going to get through this being in this condition. I want to get off of this med, but have no idea how to do so at this point anymore. I was titrating in water and reducing that way, but I am totally stalled out as I’m not functioning. Things are totally unbearable and beyond uncomfortable. I’m losing hope every passing day. Any recommendations are greatly appreciated. Thank you! 
 

Ativan - two years consistently 
- February 2016 - Up to 10 mg/day 
- March 2016 - 1.5 mg/day 
- April 2016 - 0.75 mg/day
- May 2016 - 3.0 mg/day
- August 13, 2017 - 0.15 mg/day
- September 4, 2017 - Switched to 1.5 mg of Diazepam
- May 1, 2018 - JUMPED!!

Zolpidem (Sublinox)
- March 2016 - 15 mg/night
- July 22, 2017 - JUMPED!!

Trazodone - 87.5 mg
Gabapentin - 542 mg
Amitriptyline - 5 mg

 

Edited May 31, 2022 by ChessieCat
reformated drug text to remove background colour

[Frogie]

@Seekinghope

 

Welcome to SA. We are a volunteer ran sit helping people taper off psychiatric medications, or have tapered off and are now healing.

 

This is your introduction page where you will receive information, ask questions and meet other members. We ask that each member only have one introduction page so we can keep all your information in one place.

 

First, can you please create a signature.

 

Instructions:  Withdrawal History Signature

 

How  much Gabapentin were you on before you started tapering? We don't suggest tapering more than 10% a month, and some members go much slower than that. And you do not want to go up and down on your dosage and that will cause destabilization and create symptoms.

 

Why taper by 10% of my dosage?

 

Tips for tapering off gabapentin (Neurontin)

 

What is withdrawal syndrome?

 

The Windows and Waves Pattern of Stabilization

 

Dr. Joseph Glenmullen's withdrawal symptom checklist

 

You need to hold on one dose until you stabilize before you begin your taper again. You might at that point try a 5% taper and see how you do. You could also try the Brassmonkey Slide method.

 

 

Micro-taper instead of 10% or 5% decreases

 

The Brassmonkey Slide Method of Micro-tapering

 

Do not taper any of your other medications at this time. You only want to taper one medication at a time because if you have an adverse reaction, we wouldn't know which one it is associated with.

 

We don't suggest supplements on here as they can be very sensitive to the central nervous system (CNS). We do suggest magnesium and omega. If you want to try them, try one in a small amount and wait a few days before introducing the other.

 

Magnesium

Omega-3 Fish Oil

 

When you have finished reading the links provided, please do not hesitate to reach out with any questions.

 

 

[Seekinghope]

Will I ever stabilize?

 

I was previously on 1000 mg of Gabapentin 6 years and tapered to 600 mg back in 2017. Since then I have been on 542 mg as I completed a benzo taper in 2019 which was the one I was focused on at the time and wanted to recover from that. Fast forward to 2021, I was diagnosed with Trigeminal Neuralgia after an MRI showed that my cerebellar artery was pressing down on my Trigeminal nerve. I was in quite a bit of pain and discomfort from it and decided that I would try Botox for it which set me off and it seems that since then I have been pretty much non-functional. I was taking my dose early as I was really struggling and was beyond uncomfortable. I was also taking more and then would decrease to my regular dose just to try and get relief. In some ways it helped, but other ways it didn’t. This has been a battle for seven months now and I don’t see any end in sight. Yes, I’m sure I screwed up with messing with my doses, but I have been consistent for a few weeks now and I have some pretty intense and uncomfortable moments with far too many symptoms. I am totally hopeless and don’t know if I will ever stabilize again or if I’m in tolerance, or if I kindled myself or what is going on. Not sure if I should do a fast taper or what. I’ve been titrating my dose in water. Any advice would be greatly appreciated. Thank you! 

 

Edited June 7, 2022 by ChessieCat
added Intro topic title before merging with intro topic

[ChessieCat]

I have your  new topic to your Intro topic.  Only one per member.  This keeps history in one place and means you don't have to repeat your story.

 

As Frogie requested above, please create your drug signature.  This is different from the information you provided when you joined SA.  The drug signature will allow us to see your drug history at a glance whenever you post (it appears below each post).

 

Instructions:  Withdrawal History Signature
 

[Altostrata]

Hello, @Seekinghope

 

I cannot follow your recent drug changes. What drugs are you taking now, at what times o'clock and dosages? 

 

On 6/7/2022 at 6:50 AM, Seekinghope said:

Yes, I’m sure I screwed up with messing with my doses, but I have been consistent for a few weeks now and I have some pretty intense and uncomfortable moments with far too many symptoms.

 

What symptoms? Do they occur at any particular times of day?

[Seekinghope]

Hi Altostrata,

I take 542 mg total of Gabapentin; 142 mg at 6:00 am, 200 mg at 12:00 pm and 200 mg at 8:30-9:00 pm. I take a total of 5 mg of Amitriptyline at 5:00 pm. I take a total of 87.5 mg of Trazodone; 12.5 mg at 9:00 am, 25 mg at 3:00 pm and 50 mg at 9:30 pm. I also take 15 mg of Lansoprazole at about 1:00 pm which I am not planning on coming off of as it’s been the only thing preventing me from having surgery. I have taken Lansoprazole for about 18 years now. 

 

The symptoms I am experiencing are dizziness, extreme anxiety (total terror at times), insomnia, nausea, weight loss, no appetite, brain zaps and buzzing, heat and shiver type feeling in my brain, electricity feeling throughout my whole body, nerve pain, tingling and heat feeling in my face and ears, tinnitus, heart palpitations and chest tightness, akathisia, tremors, muscle spasms, muscle twitching and stiffness, adrenaline surges, overall weakness throughout my whole body, lightheaded, air hunger, overall body weakness, trouble swallowing, extreme sensitivity to foods and products. My eyes feel like they are going to ooo out of their sockets at times; like they are dilated if that makes sense. I am easily overwhelmed and overstimulated, and start freaking out when I’m left alone. I haven’t been able to get in a car for many many months and haven’t been able to shower for weeks. I’m sure I’m missing some 

 

These symptoms come and go, and vary with intensity. Many of them persist for the whole day and I am in extreme agony 24/7. They can come on at any given moment and am not always able to pin point what sets me off. 

 

This time last year, I was doing alright. I still never totally recovered from my benzo taper, and was going through windows and waves. I was still functional, and could easily cope. This time is truly unbelievable and am totally feeling completely hopeless. I am beyond exhausted, both mentally and physically. 

 

Thank you for responding. 

[ChessieCat]

Please do a drug interaction check for ALL drugs you are currently taking and copy and paste the results here in your Introduction topic:

 

Drug.com Interactions Checker

Medscape Drug Interaction Checker

 

I suggest that you do both because they show the results in a slight different format.

[Altostrata]

11 hours ago, Seekinghope said:

I take a total of 87.5 mg of Trazodone; 12.5 mg at 9:00 am, 25 mg at 3:00 pm and 50 mg at 9:30 pm.

 

Why are you taking trazodone on this unusual schedule of divided doses?

 

You will need to taper lansoprazole over a few weeks. What surgery are you planning?

[ChessieCat]

21 minutes ago, Altostrata said:

You will need to taper lansoprazole over a few weeks. What surgery are you planning?

 

@Altostrata I had to read the following several times to understand what seekinghope wrote.  See:

 

11 hours ago, Seekinghope said:

I also take 15 mg of Lansoprazole at about 1:00 pm which I am not planning on coming off of as it’s been the only thing preventing me from having surgery. I have taken Lansoprazole for about 18 years now. 

 

[Seekinghope]

Hi Altostrata,

I take 542 mg total of Gabapentin; 142 mg at 6:00 am, 200 mg at 12:00 pm and 200 mg at 8:30-9:00 pm. I take a total of 5 mg of Amitriptyline at 5:00 pm. I take a total of 87.5 mg of Trazodone; 12.5 mg at 9:00 am, 25 mg at 3:00 pm and 50 mg at 9:30 pm. I also take 15 mg of Lansoprazole at about 1:00 pm which I am not planning on coming off of as it’s been the only thing preventing me from having surgery. I have taken Lansoprazole for about 18 years now. 

 

The symptoms I am experiencing are dizziness, extreme anxiety (total terror at times), insomnia, nausea, weight loss, no appetite, brain zaps and buzzing, heat and shiver type feeling in my brain, electricity feeling throughout my whole body, nerve pain, tingling and heat feeling in my face and ears, tinnitus, heart palpitations and chest tightness, akathisia, tremors, muscle spasms, muscle twitching and stiffness, adrenaline surges, overall weakness throughout my whole body, lightheaded, air hunger, overall body weakness, trouble swallowing, extreme sensitivity to foods and products. My eyes feel like they are going to ooo out of their sockets at times; like they are dilated if that makes sense. I am easily overwhelmed and overstimulated, and start freaking out when I’m left alone. I haven’t been able to get in a car for many many months and haven’t been able to shower for weeks. I’m sure I’m missing some 

 

These symptoms come and go, and vary with intensity. Many of them persist for the whole day and I am in extreme agony 24/7. They can come on at any given moment and am not always able to pin point what sets me off. 

 

This time last year, I was doing alright. I still never totally recovered from my benzo taper, and was going through windows and waves. I was still functional, and could easily cope. This time is truly unbelievable and am totally feeling completely hopeless. I am beyond exhausted, both mentally and physically. 

 

Thank you for responding. 

[Seekinghope]

Hi CheesieCat,

 

Sorry, I should have been more clear. I have a hiatal hernia, so Lansoprazole is what is keeping me from having surgery to repair this as I don’t want to go ahead with surgery for a hiatal hernia. Not sure I will ever want to go ahead with surgery for this. 

[Seekinghope]

Hi Altostrata,

 

I take Trazodone in divided doses because that’s how it was originally prescribed to me. I was on 325 mg total throughout the day at one point and am now down to 87.5 mg, so I just kept it at three times a day. 
 

I have a hiatal hernia, and surgery would be an option, but am not willing to undergo a surgery for that; especially right now. Lansoprazole is keeping me from having it as it keeps my symptoms associated with that at bay. One day in the future, I might consider it, but not right now, so am remaining on Lansoprazole. 

[Altostrata]

Before further discussion, Please summarize your drug and withdrawal history in your signature You may need to use a computer to do this.

[Seekinghope]

I’ve been trying to work on my signature, but have to quite the history of being polydrugged, so am trying to figure out how to condense it as it won’t let me post it due to the length. 

[Altostrata]

Compress the earlier years and provide more detail for the last few years.

[Seekinghope]

Tolerance to Gabapentin

 

What do you do if you are in tolerance and yet every time you take Gabapentin it makes you feel awful, but also helps with a few symptoms? I’m barely making it through to each dose and have severe symptoms. I’m kindled a few times and don’t know what my next step should be. I have tried going up slightly, but it doesn’t affect me well at all. Not sure I could handle a rapid taper, but I am not stabilizing. I have been in the hospital now for six weeks. Every second of every day I am in total agony and things are beyond unbearable. Please help!

 

Edited June 20, 2022 by ChessieCat
added topic title before merging with intro topic

[Seekinghope]

Hitting tolerance with Gabapentin

 

So, if one is in tolerance withdrawal, does it help to taper and do most feel better at some point during a decreased amount? Or does it only work one way and that’s by increasing? I believe I have been in tolerance for some time, but cannot increase as I don’t react well as I’ve tried it. I’m also severely kindled. 

 

 

Edited July 6, 2022 by ChessieCat
added topic title before merging with intro topic

[ChessieCat]

 

Your Introduction topic is the best place to ask questions specific to your situation.  I have moved the topic you created in another forum and merged it here with your Intro.  This will keep your history in one place and mean you won't need to repeat your story.

 

4 minutes ago, Seekinghope said:

Hitting tolerance with Gabapentin

 

When a drug reaches tolerance, also known as poop out and tachyphylaxis, it is because the brain has adapted to the dose of the drug and you need more of the drug for it to "work".  After some more time, tolerance is again reached and the dose needs to increased to get and effect from the drug.  Tolerance happens gradually.

 

If a drug has reached tolerance, usually when the drug is reduced you can feel some improvement fairly quickly but gradually you will start to feel worse again.  And then when you reduce again improvement can be felt.

 

So from this statement, I do not think your drug has reached tolerance.

 

On 6/20/2022 at 10:36 PM, Seekinghope said:

I have tried going up slightly, but it doesn’t affect me well at all.

 

Q:  What do you mean by "hitting tolerance"?

 

 

 

[ChessieCat]

So that the staff can assess your situation please provide daily symptom notes.  Post 24 hours at a time so that the days can easily be compared.  To start with we need to see 3 consecutive days.

 

See this post which explains why the staff ask for the symptom notes:

 

Keep Notes on Paper

 

Example:

DATE:

 

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

 

[ChessieCat]

On 6/20/2022 at 10:36 PM, Seekinghope said:

I have been in the hospital now for six weeks.

 

Q:  Are you still in hospital?

 

Q:  Where you given any drugs?  If yes, what?  Please list.  Are you still taking them?

[Valerio]

19 hours ago, Seekinghope said:

Hitting tolerance with Gabapentin

 

So, if one is in tolerance withdrawal, does it help to taper and do most feel better at some point during a decreased amount? Or does it only work one way and that’s by increasing? I believe I have been in tolerance for some time, but cannot increase as I don’t react well as I’ve tried it. I’m also severely kindled. 

 

 

Hi @Seekinghope are you ok?

I'm sorry you're going through this. I also have been dealing with neuropathic pain and I know how difficult it is. I also understand your issue with gabapentin because I take pregabalin These meds help with the pain but make everything else worse.

What I have been doing to manage pain is investing in therapies like acupuncture, acupressure, physical therapy, reike, Qiong, meditation, etc. I don't know if you've tried any of these therapies but it's worth a try. They have helped me a lot. Dealing with neurapathic pain and WD at the same time is very very very ... difficult. Count on me!

[ChessieCat]

I have moved your new topic to the existing topic.

 

Post #1 of this topic explains how to get non standard doses:

 

tips-for-tapering-off-amitriptyline