Jump to content

tohzhoh: took a wrong turn on Effexor and need directions back to my life


tohzhoh

Recommended Posts

Posted

After planning to have a family my whole life, I found that some things are just out of our hands.  I had 6 miscarriages, before having a baby boy that suffered from an unknown degenerative neurological disorder.  He would have 30-50 seizures a day, was blind, deaf and was in ICU most of his life.  The doctors predicted his life expectancy to be 3-4 years,  but at 5 months old, he came down with chicken pox,  which caused his organs to shut down and he died in my arms. 

 

I lost everything I lived for and my dreams of having a family were shattered.   I became extremely depressed. I decided to seek medical help for my depression.

 

My doctor prescribed Effexor (Venlafaxine).  I didn't feel it was helping, but she said it was, that I just didn't realize how much worse I would be without it and I can't expect to be my normal self again.  Every time I said it wasn't helping, she just increased the dose, until I was on the highest dose that could be prescribed, and I remained at that dose for the next six years.

 

All this loss was hard on my marriage. After struggling for a few years, we divorced.  I  walked away from my marriage, home, life, everything, taking nothing but my dogs and a bag of clothes with me, and started over alone.

 

With nowhere to go, I jumped into another relationship.  Six months later, I became pregnant.  Since medications can be harmful during pregnancy,  I stopped taking the Effexor, following a fast taper as my doctor instructed.  I developed unusual problems that I had never experienced before, which caused me to be ill throughout the pregnancy. I didn't learn until years later that what I was experiencing were "brain shivers", or "brain zaps", and it was not related to the pregnancy, but stopping the Effexor.  The doctors related my symptoms to stress and put me on bed rest, and I stayed on bed rest or in the hospital throughout most of the pregnancy, until having a c-section at 8 months.  I had a small, but healthy, baby boy.  However, I continued to feel ill.

 

I described the problem to my doctor multiple times.  I was told,  word for word, “It’s in your head, go see a shrink”.  She blew me off, like she didn't believe me and thought I was crazy.  I managed as best as I could, but progressively worsened.  I went to several other doctors, but none of them had answers and showed no interest in looking into it.

 

I talked my boss at the time.  He was an ear, nose and throat specialist, so it wasn't his specialty, but he had watched my health decline and knew that my symptoms were real and was concerned enough to help.  He sent me to several neurologists and other specialists to have tests done.  He was worried that it was serious because my symptoms resembled MS or something similar.  All the tests came back normal and no diagnosis could be found. It seemed no one had ever heard of anything like this before. 

 

My condition worsened until I was no longer able to live a functional life.  I struggled to take care of my son and couldn't interact and do things with him as much as I wanted to.  I had no idea what was wrong or where to turn for help.

 

Desperate, I searched online.  I discovered a forum of people who shared my symptoms, all of which had used Effexor at some point and were unable to get help from their doctors.  Many of them were told that their symptoms were psychosomatic, just like my doctor had claimed.  A few doctors and nurses on the site acknowledged this was real and provided what information they had. 

 

This is where I first learned of the term “brain shivers” and discovered that using Effexor can cause them.  The doctors said they are generally mild and typically go away on their own, lasting from weeks to several months. However, they said higher doses over an extended time can result in severe cases that could last years, or even permanently, and so far, there is no known treatment.

 

I continued to struggle with this for a little over two years.  Then, I was contacted by an old friend, who was now a psychologist.  This call was a turning point for me.  I told her about the problems I was having.  She knew about brain shivers and was sure that was what I was experiencing.  She was concerned that this would likely be a permanent problem for me, since I took such a high dose for so many years, and since I hadn’t had any improvement in over two years.  She said there is no known treatment, but tapering off the medication slowly is known to help prevent or reduce the problem.

 

I had been off the medication for over two years already, so it didn't seem logical to introduce the drug into my system again after so long, just to taper it out of my system.  She was concerned that it could have an adverse affect, causing my brain to adapt the wrong direction by starting it again, making the problem worse.  She said if I went back on the medication to stop the brain shivers, I would likely have to stay on it indefinitely, to keep them from coming back. The thought of taking a medication for the rest of my life that caused me to be permanently disabled without it, just did not sit well with me, especially if it could make the problem worse.  And I couldn't get a prescription anyway, since I couldn't find any doctor who was willing to treat me. 

 

She told me there is another option I could try, but she could lose her license for recommending it,  so not to tell anyone who told me, but to try methamphetamine, because it's a dopamine reuptake inhibitor, and it should stop or greatly reduce the brain shivers.  She said as long as I only use enough to stop the brain shivers, it would help me, and that using excessively or more than is necessary is what leads to the negative affects of any drug, legal or not.

 

(Disclaimer… I want to  express that I DO NOT recommend using methamphetamine, for any reason.  It’s not a solution to brain shivers, it's just an another problem to need a solution for.  It comes with its own list of problems, including legal consequences.  This choice cost me in many other ways.  Looking back, I can't say I would’ve been better off, had I not made that choice, because I couldn't function at all.  But I also can’t say I’m better off, for having made that choice.  I just replaced the problems I had with different problems. This choice led me down a different path, but it was far from a better path.)

 

It has now been 18 years since I started having brain shivers. I have been using methamphetamine responsibly for the last 16 years, which greatly reduces my brain shivers to a tolerable level and allows me to function.   I still have brain shivers once in a while, but they are typically mild, occur less consistently and don’t affect my ability to function in daily life.  The only time they bother me is if I miss a dose, or something, such as illness or stress, affects my overall health.      

Although it allowed me to function, depending on something illegal to function requires committing a crime every day, and it was inevitable that I would eventually get caught.  I ended up facing criminal charges.  I was lucky enough to have a good attorney who was able to turn a 5-35 year prison sentence into just probation.

 

I was assigned to the best probation officer anyone could ever ask for.  If it weren't for her patience and understanding of my situation, I wouldn't have a chance of making it through this without ending up in prison. 

 

It is because of the situation I am in, the need to end my dependency to an illegal drug, the inability to do so without help to stop the brain shivers I’ve had for the last 18 years and the kindness, understanding and willingness of my probation officer to patiently work with me to find a solution to my problem, that I have found myself here on this site.

 

My probation officer has helped me in the effort to find a solution through every possible direction we could think of.  I have been turned away by detox centers and inpatient treatment centers, either because they don't believe meth causes withdrawals, or due to liability concerns, since quitting will cause me medical problems.  I've been turned away by doctors and psychiatrists, when searching for a medication to help the brain shivers, to replace what I'm using, so that I could stop using and hopefully avoid or at least lessen the brain shivers, but they refuse to treat me at all, until I have already quit, which is what I needed the help for.

 

I believe tapering off the drug is the only way to successfully stop using without having severe brain shivers, as I get them every time I miss a dose.  I understand that this site is for prescription medications, but I hope it is possible to allow an exception,  since my need to taper is due to brain shivers following the use of Effexor. 

 

My probation officer approved me joining this site and is willing to be patient to allow me the time to follow this site’s recommendations for tapering, so that I have the best chance of coming out of this situation without using any drug and without severe brain shivers.

 

I am truly blessed that my probation officer is patient and understanding to allow me to try this, since quitting cold turkey will undoubtedly cause serious problems, and I pray that this site will be as understanding and willing to help as well, because this is the best chance I have to turn my life around in the right direction.

 

I never meant to end up in this situation.   Sometimes people end up in bad situations, but it doesn't mean they are bad people, they just need a little help.

 

 

 

 

 

 

1998-2004 (approx) Effexor - 225mg/day

2004 discontinued Effexor

2004-2007 - severe brain shivers/zaps progressively worsened until unable to function

2008-2022 self medicating with methamphetamine - 120mg/day 

Sept 15, 2022 - begin taper 10% 108mg/day 

Oct 28, 2022 - taper 10% 97.2mg/day

Nov 25, 2022 - taper 10% 87.48mg/day

Dec 30, 2022 - taper 10% 78.73mg/day

Jan 31, 2023 - taper 5% 74.8mg/day

March 1, 2023 - no taper - split dose from 2x/ day to 3x/day

July 31, 2023 - raised 5% 19.63mg 4x per day -  total 78.52mg/day

 

  • ChessieCat changed the title to tohzhoh: took a wrong turn on Effexor and need directions back to my life
  • Moderator Emeritus
Posted

Hello, and welcome to SA.  We are a volunteer-run community of people who have been or are getting off of psychiatric drugs.  My heart is broken to read your story. I can certainly understand why you were severely depressed.  I want to reassure you that there is a way out of drugs.  I also want to let you know, that some people struggle with symptoms such as yours for many years, but do eventually recover.  Our founder, Altostrata, took 11 years to recover from a cold turkey off Paxil, but she is recovered now.  So there is hope for you to eventually be free of the brain shivers.  

 

Thank you for giving us a clear and concise drug history.  

 

Here is some important information about how these drugs actually work.  This explains why we get symptoms from going off of these medications, and why it's so important to taper slowly and carefully, and be very cautious about changing our doses: 

 

How Psychiatric Drugs Remodel Your Brain

 

 

This helps you understand what withdrawal syndrome is: 

 

Video on Recovery from Psych Drugs

 

Windows and Waves Pattern of Stabilization

 

 

Tapering is best done extremely slowly, and we generally taper by 10% of the current dose no more than once every 4 weeks, so that the reduction becomes exponentially smaller.

 

 Why Taper by 10% of my Dosage  

 

 

Here is a link with checklists of common WD symptoms: 

 

Dr Joseph Glenmullen Withdrawal Symptom Checklists

 

 

Here are some techniques to cope with symptoms: 

 

Non Drug Ways to Cope with Withdrawal Symptoms

 

 

Stability is really important when we are tapering off psych meds.  Please read the link about stability:

 

Keep It Simple, Slow, and Stable

 

 

We don't suggest many supplements, but 2 that many of us find helpful are magnesium and omega-3 fish oil. Here are the links for info about those. It is suggested to add one at a time, and start with a low dose to see how it affects you. 


Magnesium

Omega 3 Fish Oil

 

How have you been feeling since you reduced to 108 mg methamphetamine?  What symptoms are you having, if any?  We suggest people listen to their bodies, and wait until they feel stable for at least 2 weeks before doing another reduction.  

 

Please keep in touch, and let us know how you are doing.  

Please do not private message me.  Only tag me for urgent questions about tapering and reinstating - thank you.  

 

***Please note this is not medical advice.  Discuss any decisions about your medical care with a doctor who understands psych meds and how to withdraw from them, if you can find one.

 

Lexapro   Started Apr 15 2010 - 10 mg;  started taper August 2017, recent taper info: Apr 2 '20  0.18 mg; Jul 16  0.17 mg, Aug 23  0.16 mg, Oct 7  0.15 mg, Nov 8 - 0.14, Jan 16 '21 - 0.13, Feb 7 - 0.12, Feb 22 - 0.11, Mar 26 - 0.10, May 21 - 0.09, June 15 - 0.08 Aug 16 - 0.07, Oct 6 - 0.06, Nov 21 0.05, Dec. 17 0.04, Jan 14 '22 0.03, Feb 19 0.02, Apr 18 0.01, May 15 0.005,  Jul 8, 0.00.  Psych Drug Free as of July 8, 2022!!  Woohoo!!!

other meds: Levothyroxine 75 mg

magnesium in small amounts at 4 AM, before bed

suppl AM: fish oil, flax oil, vit C, vit E, multivitamin, zinc

suppl 8 PM: magnesium 350 mg, extended release vitamin C, melatonin 2 mg

 

Paxil 2002 - 2010, switched to Lexapro 2010 

Trazodone 50 mg. 2002 - 2019, fast tapered in 2019 

Xanax 0.5 mg as needed 2002 - 2019, up to 3x weekly 

  • Administrator
Posted

Hello, @tohzhoh We do not offer peer support for tapering street drugs.

 

I am surprised to hear you cannot find an addiction medicine clinic who would help you taper methamphetamine.

 

However, methamphetamine would be tapered in the same way you taper other drugs, such as Tips for tapering off amphetamine/dextroamphetamine (Adderall)  You regularize your dose over the day so you're not taking sporadic doses and then feeling interdose withdrawal, which makes you dose more. Then you take progressively less, maybe in weekly intervals, over a period of months, at a rate where you don't get withdrawal symptoms.

 

Drug Addicts Anonymous might be able to offer you peer support and advice for tapering off.

 

If you taper gradually enough, you should not get brain zaps.

 

Good luck.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Posted

Thank you for the replies. I was literally hopeless before finding your site, since I haven't been able to find treatment through any direction I've tried.  I appreciate all the information, it will take me a while to read through it all, but I am looking forward to learning more and it all looks like it will be very helpful knowledge. 

 

Getofflex: I sincerely appreciate your response and support.  This has been a horrendous 18 years off course and it's very hard to find support when people learn I use meth. It's just something people have a negative opinion about and although I understand many people on this drug have given reason to have such an opinion, this is typically due to the behavior of people who abuse the drug, which makes it very hard for me to not be judged the same and it's almost impossible to get anyone to believe my problem is real.  Brain shivers on their own are something that is almost impossible to get anyone to believe are real, but add the fact that I use meth because it is the only thing I've found that helps to the story and I'm just assumed to be a drug addict who makes up some medical problem as an excuse to keep using.  

 

I started the reduced dose on September 15, and it seemed to be going well for the first couple weeks.  I get mild brain shivers here and there in general, but had no obvious problems from the decrease.  The third week, however,  the brain shivers started increasing in severity and occurring more often.  I continued the same decreased dose and a couple days later I woke up with an abscessed tooth and the whole left side of my face was all swollen.  I've learned over the years that I can predict when I'm going to get sick, because every time I'm coming down with something, within the week prior to being sick, before I ever have any sign of illness, my brain shivers get worse. I've learned to pay attention to them as a warning sign of something coming, so it is very likely that the brain shivers were due to the abscess coming on.  I've noticed they are settling down now that the abscess is going away. 

 

I think I may take an extra week on the 108mg before decreasing again, just to be sure my immune system is back up to par and the brain shivers have gone back down, to be on the safe side,  but I'm pretty sure it was just due to the infection and not the change in dose.  I will update when the time comes to decrease again.  

 

Altostrata: I read through the link you posted and followed a few more links from there and appreciate the information.  I was wondering if you could direct me to information or tell me more about interdose withdrawal, how to appropriately regularize doses and what is generally the ideal dose schedule to achieve, once a day, twice??

 

Also  I'm planning to make a post specifically on the topic of brain shivers, to provide a thorough description of how they feel, since people have such a hard time describing them, and I've come up with many ways over the years that helped others understand better what I am dealing with, and also to share other things I've learned over the years that can be helpful, such as the warning of illness I explained above, because it may be helpful information for some who are going through the same thing.  Should I post this under my introduction topic or make a new topic for that? And if I should make a new topic, what area should I post it under?

 

I appreciate the support, knowledge and encouragement from this site in my quest to finally put this all behind me and thank you for being there for so many who are struggling from withdrawal.  

1998-2004 (approx) Effexor - 225mg/day

2004 discontinued Effexor

2004-2007 - severe brain shivers/zaps progressively worsened until unable to function

2008-2022 self medicating with methamphetamine - 120mg/day 

Sept 15, 2022 - begin taper 10% 108mg/day 

Oct 28, 2022 - taper 10% 97.2mg/day

Nov 25, 2022 - taper 10% 87.48mg/day

Dec 30, 2022 - taper 10% 78.73mg/day

Jan 31, 2023 - taper 5% 74.8mg/day

March 1, 2023 - no taper - split dose from 2x/ day to 3x/day

July 31, 2023 - raised 5% 19.63mg 4x per day -  total 78.52mg/day

 

  • Moderator Emeritus
Posted (edited)

I’m glad to hear that your brain shivers are improving and that your abscess is also improving. You may want to reduce at a slower pace you could reduce at say 5% at a time. You may also want to wait longer than the standard four weeks between reductions. I had to do that a lot of times myself. I’m glad our site was helpful to you.

Edited by getofflex

Please do not private message me.  Only tag me for urgent questions about tapering and reinstating - thank you.  

 

***Please note this is not medical advice.  Discuss any decisions about your medical care with a doctor who understands psych meds and how to withdraw from them, if you can find one.

 

Lexapro   Started Apr 15 2010 - 10 mg;  started taper August 2017, recent taper info: Apr 2 '20  0.18 mg; Jul 16  0.17 mg, Aug 23  0.16 mg, Oct 7  0.15 mg, Nov 8 - 0.14, Jan 16 '21 - 0.13, Feb 7 - 0.12, Feb 22 - 0.11, Mar 26 - 0.10, May 21 - 0.09, June 15 - 0.08 Aug 16 - 0.07, Oct 6 - 0.06, Nov 21 0.05, Dec. 17 0.04, Jan 14 '22 0.03, Feb 19 0.02, Apr 18 0.01, May 15 0.005,  Jul 8, 0.00.  Psych Drug Free as of July 8, 2022!!  Woohoo!!!

other meds: Levothyroxine 75 mg

magnesium in small amounts at 4 AM, before bed

suppl AM: fish oil, flax oil, vit C, vit E, multivitamin, zinc

suppl 8 PM: magnesium 350 mg, extended release vitamin C, melatonin 2 mg

 

Paxil 2002 - 2010, switched to Lexapro 2010 

Trazodone 50 mg. 2002 - 2019, fast tapered in 2019 

Xanax 0.5 mg as needed 2002 - 2019, up to 3x weekly 

  • Administrator
Posted
On 10/11/2022 at 4:02 AM, tohzhoh said:

Also  I'm planning to make a post specifically on the topic of brain shivers, to provide a thorough description of how they feel, since people have such a hard time describing them,

 

Please do add your observations to 

 

 

As for interdose withdrawal: Methamphetamine has a half-life of about 10 hours. If you get an increase in symptoms between methamphetamine doses, or an increase in symptoms (craving) before your daily dose, that would be interdose withdrawal. We identify this by making notes of the daily symptom pattern relative to your drug schedule. This is the format.

 

If you get interdose withdrawal (often happens overnight, with worse symptoms when you wake up), you take the drug in divided doses. To avoid sleep disruption, you may with to take the bulk of the daily dose before 4 p.m. and  perhaps a very small dose at dinner time.

 

But you may not have interdose withdrawal, I would not divide the daily dose unless you have a good reason.

 

FYI paper mentioning half-life

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

  • 3 weeks later...
Posted

I followed your suggestion, Getofflex, and held off tapering for an extra two weeks.  Like I mentioned before, I started getting brain shivers going into the third week, but I can't be sure if this was due to the dose change or the infection I had.  I also became really, really emotional, to the extent that I couldn't even talk to someone about anything, without choking up and having to stop talking to pull myself together, just to get a sentence out without crying, and it didn't matter what the topic was, it could be something dumb that was nothing to be emotional about.

 

By the end of the 4th week, the brain shivers and my emotions were starting to settle down, but I felt that it was best to wait another two weeks as you recommended, since I had a rough start, and also having been sick at the same time.  I feel I'm ready to taper another 10 percent, so I tapered the dose to 97.2mg as of today.

 

Altostrata, I think I will try what you mentioned for avoiding interdose withdrawal.  Adjusting my dose schedule so that I take a small dose in the evenings should help make my mornings smoother.  I have always struggled in the mornings with brain shivers and I think your suggestions may really improve my mornings.  If I understand you right, I would split my afternoon dose into two, and take, say, two thirds at the regular time, and delay the other third until later in the evening?  I believe that is what you were implying?  

 

I started my second taper of 10 percent today.  I don't suspect it will be a problem to start splitting the last dose today as well, since it will be the same dose amount each day, but just more evenly spread over the entire 24 hours.

 

I started the tapered dose of 97.2mg today.  So, instead of taking 48.6mg twice a day, I took a morning dose of 48.6mg, and plan to take an afternoon dose of 32.4mg, followed by a late dose of 16.2mg.  If I misunderstood the process, or you feel it's not a good idea to start both changes on the same day, please let me know.    

 

I will post updates when there are any changes to report.  I plan to keep a daily record, since I am adjusting the schedule, so I have a thorough breakdown of how each day is going, to better evaluate if any further adjustment would be beneficial. 

 

Thank you again for your knowledge and information.  Even though I am just beginning, I feel I'm already making progress and I am excited to be a little closer to the end of this rough journey.

1998-2004 (approx) Effexor - 225mg/day

2004 discontinued Effexor

2004-2007 - severe brain shivers/zaps progressively worsened until unable to function

2008-2022 self medicating with methamphetamine - 120mg/day 

Sept 15, 2022 - begin taper 10% 108mg/day 

Oct 28, 2022 - taper 10% 97.2mg/day

Nov 25, 2022 - taper 10% 87.48mg/day

Dec 30, 2022 - taper 10% 78.73mg/day

Jan 31, 2023 - taper 5% 74.8mg/day

March 1, 2023 - no taper - split dose from 2x/ day to 3x/day

July 31, 2023 - raised 5% 19.63mg 4x per day -  total 78.52mg/day

 

  • Moderator Emeritus
Posted

It is generally better to make only one change at a time.  When you have more than one variable it can be difficult to know what causes any issues if they arise.

* NO LONGER ACTIVE on SA *

MISSION ACCOMPLISHED:  (6 year taper)      0mg Pristiq  on 13th November 2021

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering from Oct 2015 - 13 Nov 2021   LAST DOSE 0.0025mg

Post 0 updates start here    My tapering program     My Intro (goes to tapering graph)

 VIDEO:   Antidepressant Withdrawal Syndrome and its Management

Posted

Thank you, Chessiecat, I didn't even think about that, but what you said makes perfect sense.  I'm glad you pointed that out to me, because otherwise I wouldn't have thought of that until it was too late and I had issues with more than one change to consider. 

 

What you do recommend when someone needs to make other changes such as that when they are in the process of tapering?  Should they skip a month of tapering and make the other change instead?  Or how would they go about working this in?

 

I appreciate that you responded quickly enough to prevent me from making a mistake I may have regretted. 

1998-2004 (approx) Effexor - 225mg/day

2004 discontinued Effexor

2004-2007 - severe brain shivers/zaps progressively worsened until unable to function

2008-2022 self medicating with methamphetamine - 120mg/day 

Sept 15, 2022 - begin taper 10% 108mg/day 

Oct 28, 2022 - taper 10% 97.2mg/day

Nov 25, 2022 - taper 10% 87.48mg/day

Dec 30, 2022 - taper 10% 78.73mg/day

Jan 31, 2023 - taper 5% 74.8mg/day

March 1, 2023 - no taper - split dose from 2x/ day to 3x/day

July 31, 2023 - raised 5% 19.63mg 4x per day -  total 78.52mg/day

 

  • Moderator Emeritus
Posted (edited)
On 10/30/2022 at 5:39 AM, tohzhoh said:

What you do recommend when someone needs to make other changes such as that when they are in the process of tapering?  Should they skip a month of tapering and make the other change instead?  Or how would they go about working this in?

 

You will need to listen to your body/symptoms.

 

If you are holding for 4 weeks then you might be able to make a change during Weeks 3 and/or 4, depending on how stable you feel after the reduction.  You may need to hold for longer before making the next reduction.  There is no hard and fast rule.  The main "rule" is to do things one at a time and to do it gradually if possible.

 

I will put a link here for reference in case you ever need it.  I suggest you read the first post and keep it in mind because it relates to various things regarding changes and can be helpful information to know about:

 

cross-over-changing-form-eg-tablet-to-liquid-of-drug-or-changing-brand-of-same-drug

 

 

 

 

Edited by ChessieCat

* NO LONGER ACTIVE on SA *

MISSION ACCOMPLISHED:  (6 year taper)      0mg Pristiq  on 13th November 2021

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering from Oct 2015 - 13 Nov 2021   LAST DOSE 0.0025mg

Post 0 updates start here    My tapering program     My Intro (goes to tapering graph)

 VIDEO:   Antidepressant Withdrawal Syndrome and its Management

Posted

Thank you ChessieCat I will read through that.  I held off on making the change for now as you suggested and see how things go.  I'm making a daily log and will post it if the need arises but for now things are going okay.   Thank you again for your responses.  It's really helpful to have the support and information to make this transition possible. 

1998-2004 (approx) Effexor - 225mg/day

2004 discontinued Effexor

2004-2007 - severe brain shivers/zaps progressively worsened until unable to function

2008-2022 self medicating with methamphetamine - 120mg/day 

Sept 15, 2022 - begin taper 10% 108mg/day 

Oct 28, 2022 - taper 10% 97.2mg/day

Nov 25, 2022 - taper 10% 87.48mg/day

Dec 30, 2022 - taper 10% 78.73mg/day

Jan 31, 2023 - taper 5% 74.8mg/day

March 1, 2023 - no taper - split dose from 2x/ day to 3x/day

July 31, 2023 - raised 5% 19.63mg 4x per day -  total 78.52mg/day

 

  • 2 months later...
Posted

I apologize for not posting an update sooner, I have been very busy and it has been a struggle to keep up with everything.  I have had family visiting from out of town for the last two months, including my son, and I spent every moment I could with him while I had the opportunity.  I have tapered my dose twice since my last post, but it's been everything I could do to get through the day every day and I just haven't had it in me to write a post until now.  I also work as a caregiver to a dementia patient who is in the later stages and is much harder to manage, so that and having my family here, I have had quite a lot of stress to deal with.  I have kept up with my tapering schedule, tapering down to 87.48 per day, then to 78.73, which i started on December 30th.  I am struggling a little with the brain shivers, having them daily but not severe, but I think I can push through.  I'm sure the added stress has a lot to do with it, because before I started a tapering schedule I had brain shivers whenever I was under a lot of stress.  Now that the holidays are over I am hoping the brain shivers will slow back down and I can continue the schedule without problems.  I should know in the next few weeks whether I need to slow down or adjust my schedule or if all is well.  Thank you for your continued support in my quest to be free of brain shivers!

1998-2004 (approx) Effexor - 225mg/day

2004 discontinued Effexor

2004-2007 - severe brain shivers/zaps progressively worsened until unable to function

2008-2022 self medicating with methamphetamine - 120mg/day 

Sept 15, 2022 - begin taper 10% 108mg/day 

Oct 28, 2022 - taper 10% 97.2mg/day

Nov 25, 2022 - taper 10% 87.48mg/day

Dec 30, 2022 - taper 10% 78.73mg/day

Jan 31, 2023 - taper 5% 74.8mg/day

March 1, 2023 - no taper - split dose from 2x/ day to 3x/day

July 31, 2023 - raised 5% 19.63mg 4x per day -  total 78.52mg/day

 

  • Administrator
Posted

Since you're susceptible to brain shivers, it may be better for you to taper by 5% so as not to aggravate them.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

  • 4 weeks later...
Posted

Thank you for your suggestion altostrata. I have had a rough couple months. I was hoping the mild brain shivers were due to stress, so having already lowered my dose prior to your response, I tried to stick with that and see if they settled down over the next few weeks.  They have slightly improved but not gone away completely, so I am definitely following your suggestion and only lowered my dose 5% this time. I seem to have reached a point where my dose is just not enough to keep them at bay, but they are mild enough to not affect my ability to function, although they do make me struggle some days, as I just don't feel as well as I could.  I am hoping this month will improve with only a 5% taper and will probably continue at 5% from this point forward, unless you suggest otherwise. If I am still struggling with them at the end of this month, I wonder if I should hold off the next taper for a couple weeks or if it is better to keep the tapering schedule as consistent as possible? I can try to post my daily log here, but will probably have to copy it by typing it manually to the post. Until then, it seems to have a pattern in that mornings are rough, waking up with brain shivers, which settle down after taking morning dose within a couple hours, and then random brain shivers throughout my day, which are not bothersome and not consistent.  The mornings seem to be when I get them continuously enough to really bother me.  I have only taken the 5% tapered dose yesterday and today, so I will know better in the following weeks if the brain shivers will settle down.  Thank you again for your advice,  you have truly been a blessing for me to get through this.

1998-2004 (approx) Effexor - 225mg/day

2004 discontinued Effexor

2004-2007 - severe brain shivers/zaps progressively worsened until unable to function

2008-2022 self medicating with methamphetamine - 120mg/day 

Sept 15, 2022 - begin taper 10% 108mg/day 

Oct 28, 2022 - taper 10% 97.2mg/day

Nov 25, 2022 - taper 10% 87.48mg/day

Dec 30, 2022 - taper 10% 78.73mg/day

Jan 31, 2023 - taper 5% 74.8mg/day

March 1, 2023 - no taper - split dose from 2x/ day to 3x/day

July 31, 2023 - raised 5% 19.63mg 4x per day -  total 78.52mg/day

 

  • Administrator
Posted

It may be that you need to increase your dosage slightly and stop tapering for some months until the brain shivers go away completely. With your history of going on and off drugs, it may be that your nervous system could use a vacation from drug changes.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

  • 2 months later...
Posted

Update: I have followed your advice to stop tapering for a few months. I have remained at 74.8mg/ day for the last two months, and will continue at this dose until my brain shivers are under control.  Rather than slightly increasing my daily dose, I decided to first try a suggestion you made earlier in my post, to split the dose throughout the day.  Instead of taking 2 doses per day, I split the dose to 3 times per day, hoping to better control the brain shivers in the mornings without having to increase my current daily dose amount.  Rather than taking 37.4mg twice a day, I increased my morning dose to 43.63mg, since this is when I seem to lack enough in my system to stop the brain shivers. Then, I split the remaining 31.17mg of my daily dose into two separate doses, in order to help this amount last me through the night, so I don't defeat the purpose by having less in my system going into the mornings. So instead of taking a second dose of 31.17mg in the evening around 6pm, I am taking a dose of 15.58mg at 6pm, and another dose of 15.59mg, just before I go to bed.  I have found that just this small change, moving 6mg of my evening dose to my morning dose, has greatly improved how I feel. It seems the amount I have in my system throughout the day is in much better balance to provide what I need, when I need it.  Your suggestion is greatly reducing my brain shivers and I am feeling much better.  I am going to remain at this dose again this month as you suggested and allow my body a little more time to adjust before making any further changes.  Thank you so much for your suggestions, they have helped me over a hurdle that would have likely knocked me down without your support. I'm almost half way there... Thank you for helping to make this possible!

1998-2004 (approx) Effexor - 225mg/day

2004 discontinued Effexor

2004-2007 - severe brain shivers/zaps progressively worsened until unable to function

2008-2022 self medicating with methamphetamine - 120mg/day 

Sept 15, 2022 - begin taper 10% 108mg/day 

Oct 28, 2022 - taper 10% 97.2mg/day

Nov 25, 2022 - taper 10% 87.48mg/day

Dec 30, 2022 - taper 10% 78.73mg/day

Jan 31, 2023 - taper 5% 74.8mg/day

March 1, 2023 - no taper - split dose from 2x/ day to 3x/day

July 31, 2023 - raised 5% 19.63mg 4x per day -  total 78.52mg/day

 

  • Administrator
Posted

Good to hear you're feeling better.

 

To answer any questions bout tapering from your current complex drug schedule, we would have to see 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.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

  • 3 months later...
Posted

I am sorry for having such a delay in updates, I've been overwhelmed for the last few months, as well as dealing with these brain shivers.  I did fairly well when I first split my dose to 3 times per day.  However, within several weeks I started struggling.  I haven't made any changes in my dose at all since March, but my brain shivers have crept back up on me to the extent that I am having them all the time.  They are tolerable most of the time, but they do increase in severity and become intolerable. 

 

I made a scale to rate my brain shivers for my daily logs, hoping to better clarify how and when they change throughout the day, since I have them all the time and only the severity changes.  I have noticed that whether my brain shivers are mild or severe, there is little difference in the time it takes to reduce them or the level they are reduced to after each dose is taken.  However, the difference in severity seems to linger throughout the day, meaning, if they are severe, they drag on a number or so higher for most of the day after I've gotten them reduced.  It seems that approximately 7 - 8 hours after taking a dose I start to experience an increase in brain shivers, which are quickly reduced when taking another dose. This reduced level seems to have become a base level for me at this point, but it is one which I can live with. 

 

The worst time of the day for me is mornings.  There is typically about 8 to 10 hours between my evening and morning dose.  The longer between them, the worse my mornings are.  Once the dose starts to wear off, the brain shivers increase quickly, until I take another dose.   A delay of just a couple hours between doses seems to cause a significant increase.  I wonder if taking 4 doses instead of 3 would prevent this constant up and down severity that I experience every morning.

I have included the scale I made for logging my brain shivers, as well as a week of my daily log entries.  I am logging the brain shivers by the number from this scale, at the time the number changes.  For example, a log entry of "9am shivers - 4" means that my brain shivers have either increased or decreased, based on the previous log entry, and the number that applies has changed to 4.  Because I experience them consistently, if the next entry following "9am shivers - 4" is "3pm shivers - 5", this means that from 9am until 3pm, I experienced brain shivers at a level 4, but at 3pm they increased to that of level 5, then remained at 5 until the next log entry is made following this entry at 3pm.  I hope this isn't too confusing, but I have brain shivers continually, so I have to be able to rate them to document any changes. 

Brain shivers 1-10 severity scale
#1   - weak, minimal shivers (20 or less per day)
#2   - mild, frequent shivers (several per hour or more)
#3   - mild, constant shivers, bothersome but tolerable
#4   - mild, constant shivers, increased sensitivity to sensory stimulation, noticeably bothersome
#5   - moderate, constant shivers, causes malaise, reduced                   productivity, struggle (similar to bad headache)
#6   - same as #5 with the addition of vision impairment (twisting, like looking through a kaleidoscope)
#7   - strong, constant shivers, sensitivity to sensory stimulation impedes functioning (similar to migraine)
#8   - same as #7 with the addition of cognitive impairment, confusion, loss of balance and coordination, (stumbling/appearing drunk)
#9   - same as #8 but severe enough that functioning is limited to necessity, such as going to the bathroom, and requires assistance
#10 - incapacitating severity, bed ridden, any stimulation (sound, light, movement, touch, communication, etc., even breathing) is unbearable

Here is my last full week of daily logs

Sunday

9:30am woke up, shivers - 8, took morning dose 43.63mg, back to bed
10am woke up, shivers - 5, ate breakfast
10:15am shivers - 4
1:30pm ate lunch
4pm took afternoon dose 15.58mg
4:30pm shivers - 3
7:30pm ate dinner
10:45pm took evening dose 15.59mg, went to bed

Monday

7:30am woke up, shivers - 6, took morning dose 43.63mg
7:45am shivers - 5, ate breakfast
8:15am shivers - 3
3:15pm shivers - 4
3:30pm took afternoon dose 15.58mg
4pm shivers - 3
8:30pm ate dinner
10:45 took evening dose 15.59mg
11:15pm went to bed

Tuesday

7:45am woke up, shivers - 8, took morning dose 43.63mg
8:15am shivers - 6, ate breakfast
8:45am shivers - 4
3pm shivers - 5
3:30pm shivers - 6, took afternoon dose 15.58mg
4:15pm shivers - 4
8pm ate dinner
10pm shivers - 5
10:30pm took evening dose 15.59mg, went to bed

Wednesday

7:45am woke up shivers - 8, took morning dose 43.63mg
8am shivers - 6, ate breakfast,
8:45am shivers -4
4pm shivers - 5, took afternoon dose 15.58mg
4:15pm shivers - 3
7:30pm ate dinner
10:45pm took evening dose 15.59mg
11pm- went to bed

Thursday

7am woke up shivers - 6, took morning dose 43.63mg
7:30am shivers - 4, ate breakfast
8am shivers - 3
2:30pm shivers - 4
3:45pm shivers - 5, took afternoon dose 15.58mg
4pm shivers - 4
7:45pm ate dinner
10:45pm took evening dose 15.59mg
11pm went to bed

Friday

7am woke up,  shivers - 7, took morning dose 43.63mg
7:30am shivers - 4, ate breakfast
8:15am shivers - 3
2:45pm shivers - 4
4pm took afternoon dose 15.58mg
4:15pm shivers - 3
7:45pm ate dinner
10:45pm took evening dose 15.59mg
12am went to bed

Saturday

9am woke up, shivers - 8, took morning dose 43.63mg
9:30am shivers - 6, ate breakfast
10:15am shivers - 3

12:45 ate lunch
4pm took afternoon dose 15.58mg
8pm ate dinner
10:45pm took evening dose 15.59mg
11:45pm went to bed

 

I was doing well with the tapering up until March, but I seem to have reached a point I can't get past.  I wonder if splitting to 4 doses per day would help, since that would be only 6 hours between doses, or if I need to go up slightly in the dose amount to get this under control again, or both?


1998-2004 (approx) Effexor - 225mg/day

2004 discontinued Effexor

2004-2007 - severe brain shivers/zaps progressively worsened until unable to function

2008-2022 self medicating with methamphetamine - 120mg/day 

Sept 15, 2022 - begin taper 10% 108mg/day 

Oct 28, 2022 - taper 10% 97.2mg/day

Nov 25, 2022 - taper 10% 87.48mg/day

Dec 30, 2022 - taper 10% 78.73mg/day

Jan 31, 2023 - taper 5% 74.8mg/day

March 1, 2023 - no taper - split dose from 2x/ day to 3x/day

July 31, 2023 - raised 5% 19.63mg 4x per day -  total 78.52mg/day

 

  • 2 weeks later...
Posted

I'm not sure if anyone viewed my daily logs?  I haven't added more, since I haven't gotten a response from anyone yet, I didn't know if anyone was reading them or not?  I continue to keep a log and can post my recent logs if someone is willing to look them over and help me stop these shivers, or at least keep them at a manageable level.  

 

Since my last post, I've been getting up earlier in the mornings, to minimize the gap between evening and morning doses, which has helped slightly, but I think splitting to 4 doses a day would be more likely to prevent the increase I face in the mornings, even if it means having to get up in the night to take a dose, since that seems a minor inconvenience that may improve how I am feeling overall.   

 

If anyone has any suggestions, advice, or thoughts, please let me know.   I was doing so well, but I feel like I've hit a wall and can't seem to get past this point.  I don't know if it's common to do well tapering and then reach a dose that you just can't seem to get past, or what I'm doing wrong, so I would appreciate any thoughts or suggestions anyone has.   Thank you.  

1998-2004 (approx) Effexor - 225mg/day

2004 discontinued Effexor

2004-2007 - severe brain shivers/zaps progressively worsened until unable to function

2008-2022 self medicating with methamphetamine - 120mg/day 

Sept 15, 2022 - begin taper 10% 108mg/day 

Oct 28, 2022 - taper 10% 97.2mg/day

Nov 25, 2022 - taper 10% 87.48mg/day

Dec 30, 2022 - taper 10% 78.73mg/day

Jan 31, 2023 - taper 5% 74.8mg/day

March 1, 2023 - no taper - split dose from 2x/ day to 3x/day

July 31, 2023 - raised 5% 19.63mg 4x per day -  total 78.52mg/day

 

  • Administrator
Posted

What drug are you tapering? From your signature, it appears to be methamphetamine.

 

We do not offer peer support for tapering street drugs. We don't know anything about them.

 

One guideline, though: If your withdrawal symptoms get worse, stop tapering for a while.

 

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Posted

It was Effexor that caused my brain shivers.  I have reduced my dose from 120mg per day down to 74.8mg per day, and I would not have accomplished this without the information and knowledge your site has made available. 

 

My success so far, as well as the success of many others using this approach through your site, clearly proves that the tapering approach is effective in overcoming dependancy, regardless which drug one has become dependant.  I understand each drug has certain differences, but the tapering approach works because it is based on how the body responds to chemistry changes overall, which is a predictable pattern, with little variance from one drug to another.  

 

I am going to raise my dose 5 percent as recommended for similar problems.  I am also going to split this into 4 times per day rather than 3, so that I do not go past 6 hours between doses, since my brain shivers get worse starting 7 hours after a dose.  Hopefully this will give me what I need to get my brain shivers under control again.  I will post an update soon.  Thank you for all the information and support you have given to ease the struggle for so many people.  

1998-2004 (approx) Effexor - 225mg/day

2004 discontinued Effexor

2004-2007 - severe brain shivers/zaps progressively worsened until unable to function

2008-2022 self medicating with methamphetamine - 120mg/day 

Sept 15, 2022 - begin taper 10% 108mg/day 

Oct 28, 2022 - taper 10% 97.2mg/day

Nov 25, 2022 - taper 10% 87.48mg/day

Dec 30, 2022 - taper 10% 78.73mg/day

Jan 31, 2023 - taper 5% 74.8mg/day

March 1, 2023 - no taper - split dose from 2x/ day to 3x/day

July 31, 2023 - raised 5% 19.63mg 4x per day -  total 78.52mg/day

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...

Important Information

Terms of Use Privacy Policy