Jane318: Tapering off Effexor - Struggling at the End

[Jane318]

I am so grateful for this website, having discovered you through Substack article by author A Midwestern Doctor - thank you so much for all you do!

 

I am 69 YO female; I had been on various AD's for about 40 years, mostly SSRIs and SNRIs.  Like many people, I recently and finally woke up to all the lies and dangers around psychotic drugs and became committed to getting off them.  I couldn't find any doctor in my neck of the woods with experience helping people get off these drugs, so I embarked on my own Effexor detox program in late February 2023.  My original dose was 112.5 mg (3 x 37.5 mg).  I began the usual way, cutting pills in half and then decreasing  by dose every couple weeks.  Noticeable, but first couple months were not too bad.  Fortunately, I discovered Dr. Mark Horowitz's research in April 23 and adopted the hyperbolic tapering protocol.  Still, I now know that I was still cutting doses too much and too frequently - 11-13% of prior dose every 2 weeks instead of 10% every four weeks.  In Feb of this year, I switched to 5% (of prior dose) decrement every two weeks, which I discovered as an alternate to 10% per month, and that is what I have been doing since then.  I am now down to 1.36 mg/day per my calculations. However, symptoms have definitely worsened over the last couple months.  At this point, I am really, really, really struggling.  I think that perhaps my too-fast taper earlier in the game is probably catching up with me.   So, based on what I have read, I have decided I need to increase my dose back to prior and see if that helps.  Also, I realize now that I should be taking it in half-doses at 12 hour intervals instead of once a day, and will start doing that.

 

I would value any input / advice - is going back to prior dose the right approach or should I back up even more?  Sure wish I had not been so cocky in going about this, I am paying the price for it now.

 

FYI, I make my own solutions.  Also, I have uploaded my spreadsheet in case this is of interest to anyone else.

 

 

Venlafaxine.xlsx

Edited July 12 by Emonda
Name to title

[Emonda]

Welcome @Jane318,

 

Thank you for attending to your signature.

 

May I ask, in the excel document, is there a more detailed version of your taper? I'm not comfortable opening the attachment.

 

7 hours ago, Jane318 said:

Like many people, I recently and finally woke up to all the lies and dangers around psychotic drugs and became committed to getting off them. 

 

I hear you. It was a similar awakening for me after close to 3 decades.

 

7 hours ago, Jane318 said:

Fortunately, I discovered Dr. Mark Horowitz's research in April 23 and adopted the hyperbolic tapering protocol.

 

An excellent resource!

 

7 hours ago, Jane318 said:

I now know that I was still cutting doses too much and too frequently - 11-13% of prior dose every 2 weeks instead of 10% every four weeks. 

 

7 hours ago, Jane318 said:

I think that perhaps my too-fast taper earlier in the game is probably catching up with me.

 

Yep, this can catch up with you down the track...and it seems that may be an issue for you now.

 

7 hours ago, Jane318 said:

I am now down to 1.36 mg/day per my calculations. However, symptoms have definitely worsened over the last couple months.  At this point, I am really, really, really struggling. 

 

The lower you go, the slower you need to go. When symptoms pick up, it's best to listen to your body and pause the taper until stability returns. Those that taper too quickly often develop very unpleasant withdrawal symptoms. This Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) is a helpful summary of what many experience. The point of providing this list is not to scare you but to ensure your eyes are open to the warning signs as you taper.

 

7 hours ago, Jane318 said:

Also, I realize now that I should be taking it in half-doses at 12 hour intervals instead of once a day, and will start doing that.

 

I'll let someone who has personal experience with this AD comment on this.

 

7 hours ago, Jane318 said:

So, based on what I have read, I have decided I need to increase my dose back to prior and see if that helps.

 

7 hours ago, Jane318 said:

is going back to prior dose the right approach

 

I did something similar when I first found this site. I up-dosed to the last place I felt ok (no more than a 10% increase), then held for 5 or 6 months.

 

Don't expect an immediate response. Time and patience are required.

 

Recovery from ADs and tapering is not linear. There are good days and not-so-good days/weeks/months. This is referred to as the Windows and waves pattern of stabilization.

 

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

Magnesium

Omega-3 fatty acids (fish oil)

Avoid alcohol.

Don't change the manufacturer of your AD.

Once again, welcome to S.A.

Emonda

[Tuikea]

Hi, 

What are your symptoms or struggling with? We are the same age with same history presently tapering same drug I am on 13mg from 225mg in 6 months. 

[Jane318]

Regarding administrator request for a more detailed version of my taper, here is a cut and paste of the info.  I can also upload a pdf if that would help.

[Jane318]

Emonda,

 

Thank you so much for your reply and good information.  It confirms for me that indeed I have been tapering too quickly, and not staying in tune with my symptoms.  Wanting to be off the drug was taking precedence over listening to my body and being willing to give up my own ambitious schedule in order to stay in a safe and sane zone.  I will hang out here for as long as it takes to get to somewhat out of this hole I got myself in.

[Jane318]

Tukiea

 

So good to meet someone same age and history!  And congratulations on achieving the progress you have made thus far.

 

I am in a bad place - extreme fatigue, difficulty focusing, find no enjoyment in anything, feel disconnected from friends and family, extremely hard to be with people, ashamed, it is all I can do to get through the day.  I am a long-time Christian, but I am feel completely disconnected from God and unable to read my Bible or pray.  If it were not that I have a son and I cannot bear saddling him with my suicide, I do not think I would be here.   That said, I can still recognize God's hand in helping me through this, including finding this site and connecting with a few compassionate people who understand what I am going through. 

 

Given where you are at (13 mg), I urge you to read and heed Emonda's replies to me above.  Be wiser than I was about listening to your body, even more as you continue to taper down to lower and lower doses.  I wish I had gone so much slower.   And I am convinced that hyperbolic tapering is the best method, reducing by no more than 10% of prior dosage no more frequently than every four weeks.  You do NOT want to end up where I am right now. 

 

 

[Jane318]

Tuikea,

 

Read your previous post more carefully - going from 225 mg to 38 mg in six months is very, very fast.  Everyone is different and I hope you are doing okay, but I do encourage you to read again / more in these forums on recommended taper schedules.  The current wisdom appears to be no more / faster than 10% of prior reduction every 4 weeks.  After 4 weeks assess and make sure you are ready to move to the next decrement.  OR 5% every 14 days, which is what I was doing before I up-dosed one step to give my body time to stabilize.   Early warning signs for me, which I did not heed very well - increased irritation with others; increasing withdrawal from people / friends / church; sleep disruptions (waking up at night and unable to fall back asleep), losing interest in activities that I used to enjoy.  It might be good for you to camp where you are for a while - weeks or even months.

 

Also, I think, like me, you are taking the 37.5 mg pills (not the extended release capsules), and splitting them to cut the dose.  That is what I did at the beginning, but then once I got to lower doses, I started mixing my own solutions and drinking them.  I started taking the lower dose solutions once a day, in the morning, but am now taking half in morning and half in evening.  To make your own solutions, you will need a scale that can measure to mg and some small accurate measuring containers.  It looks like there is a lot of info on how to make your own solutions on this site.  But let me know if you want more information on how I do mine, or I should probably go to that forum and add there, if it is not already covered.

 

One more thing - I saw in another of your posts that you, like me, also take levothyroxine for hypothyroidism.  another whole layer of complexity, which I too am trying to work through.  I will go read the info that is posted there.

[Tuikea]

On 7/13/2024 at 4:44 AM, Jane318 said:

Tukiea

 

So good to meet someone same age and history!  And congratulations on achieving the progress you have made thus far.

 

I am in a bad place - extreme fatigue, difficulty focusing, find no enjoyment in anything, feel disconnected from friends and family, extremely hard to be with people, ashamed, it is all I can do to get through the day.  I am a long-time Christian, but I am feel completely disconnected from God and unable to read my Bible or pray.  If it were not that I have a son and I cannot bear saddling him with my suicide, I do not think I would be here.   That said, I can still recognize God's hand in helping me through this, including finding this site and connecting with a few compassionate people who understand what I am going through. 

 

Given where you are at (13 mg), I urge you to read and heed Emonda's replies to me above.  Be wiser than I was about listening to your body, even more as you continue to taper down to lower and lower doses.  I wish I had gone so much slower.   And I am convinced that hyperbolic tapering is the best method, reducing by no more than 10% of prior dosage no more frequently than every four weeks.  You do NOT want to end up where I am right now. 

 

 

Thanks for the advice, I  found this link in another post you didn't say you have anxiety but if you do I am getting help from reading it.

 

https://nothingworks.weebly.com/

 

I don't have faith in God like you have I know people that do and it helps them.

Do you try to exercise? I go for a walk everyday in nature be it on the beach or bush or a park, it gets me out and about and helps to strengthen me.

 

[Jane318]

21 minutes ago, Tuikea said:

Thanks for the advice, I  found this link in another post you didn't say you have anxiety but if you do I am getting help from reading it.

 

https://nothingworks.weebly.com/

 

I don't have faith in God like you have I know people that do and it helps them.

Do you try to exercise? I go for a walk everyday in nature be it on the beach or bush or a park, it gets me out and about and helps to strengthen me.

 

 

Thankfully, I do not deal with anxiety (so far) - "Just" depression.  My heart goes out to you because I think anxiety may be even worse to deal with.  Thank you for the link.

 

I adopted a dog a couple months ago, in part to motivate me to get out and walk, because she soooo loves it.  It is hard for me to do it, but I am always glad I did.  It does make me feel better.  I have a community park with some trails right across the street from me, so it is certainly easy for me.  That's where I go usually although there are other pretty areas, even along the water here, that I could do as well.  I also started taking piano lessons again a couple months ago after 50 years.  It was really helping me learn to focus and made me do something, as I needed to be ready for my next lesson.  They are too expensive to waste.  However, I am thinking of taking a hiatus now because I am unable to even sit down and practice.  I sure hope this gets better...

[Tuikea]

3 hours ago, Jane318 said:

 

Thankfully, I do not deal with anxiety (so far) - "Just" depression.  My heart goes out to you because I think anxiety may be even worse to deal with.  Thank you for the link.

 

I adopted a dog a couple months ago, in part to motivate me to get out and walk, because she soooo loves it.  It is hard for me to do it, but I am always glad I did.  It does make me feel better.  I have a community park with some trails right across the street from me, so it is certainly easy for me.  That's where I go usually although there are other pretty areas, even along the water here, that I could do as well.  I also started taking piano lessons again a couple months ago after 50 years.  It was really helping me learn to focus and made me do something, as I needed to be ready for my next lesson.  They are too expensive to waste.  However, I am thinking of taking a hiatus now because I am unable to even sit down and practice.  I sure hope this gets better...

Mine tablets are xr and I grind them into a powder then weigh it and take in Greek yogurt. I tried splitting the dose to twice a day but made no difference so I just take it in the morning.

I had all your symptoms you are having now before I even started to taper, the drug just isn't helping me that's why I decided to taper. I have just started to feel less depressed and irritated by everything but I have also just started to get a little anxiety. Yes I have tried to do this fast at nearly 70 years old I didn’t want to spend what unknown time I have left tapering.

I too got 2 small dogs for the first time March last year and I have a husband that drives me up the wall most of the time. We rented our house our and are traveling New Zealand in our motorhome for the last 4 years.

You are on such a low dose now is it doing anyway to help now? What your weather like have you been getting enough sun for your vitamin D.

Yes I think I may have to stop my taper and see if my anxiety settles although it's not bad all day I have got back from a walk and I'm good.

When I reached 37.5mg I have been going down by .001 per day by weighing.

 

 

[Jane318]

2 hours ago, Tuikea said:

Mine tablets are xr and I grind them into a powder then weigh it and take in Greek yogurt. I tried splitting the dose to twice a day but made no difference so I just take it in the morning.

I had all your symptoms you are having now before I even started to taper, the drug just isn't helping me that's why I decided to taper. I have just started to feel less depressed and irritated by everything but I have also just started to get a little anxiety. Yes I have tried to do this fast at nearly 70 years old I didn’t want to spend what unknown time I have left tapering.

I too got 2 small dogs for the first time March last year and I have a husband that drives me up the wall most of the time. We rented our house our and are traveling New Zealand in our motorhome for the last 4 years.

You are on such a low dose now is it doing anyway to help now? What your weather like have you been getting enough sun for your vitamin D.

Yes I think I may have to stop my taper and see if my anxiety settles although it's not bad all day I have got back from a walk and I'm good.

When I reached 37.5mg I have been going down by .001 per day by weighing.

 

 

Thanks for sharing more of your story.  You are doing really well I think, considering such a fast taper.  I am glad you are finding ways to cope with the anxiety.

I started ADs for clinical depression - once I found a drug that helped, I would stay on it until it stopped "working" and then the doctor would try something different.  I had been on Effexor for many years now and it I knew it was losing its effectiveness.  If I hadn't decided to taper off, I would have been back to the doc asking for something different.  The depression I am dealing with now is withdrawal from the drug.  And yes, I am at a low dose, but it is in the low dose range that most of the brain changes happen.  So I don't want to just quit now, since it I'm having such a hard time at present.  You may be experiencing more withdrawal now that you are getting down in dosage.

I have been divorced for 30 years and live alone.  Being single was fine by me after 11 years in an unhappy marriage.  But now that I am older (and retired), I wish I were married, that I had someone.  So even though your husband drives you up the wall most of the time, it is good you have him.  It must be so difficult for a spouse to go through this.   

I do try to get sunshine, I know it is important.  I could do better at that.  My energy / motivation have been in the basement for years, so it's been a challenge, and I tend to be lazy.  Pacific Northwest weather - Summer is good for sunshine.  It can be cloudy most days from late fall through spring.  And days are very short in the winter months.

I have always dreamed of seeing New Zealand!  Where is your permanent home?

[Tuikea]

4 hours ago, Jane318 said:

Thanks for sharing more of your story.  You are doing really well I think, considering such a fast taper.  I am glad you are finding ways to cope with the anxiety.

I started ADs for clinical depression - once I found a drug that helped, I would stay on it until it stopped "working" and then the doctor would try something different.  I had been on Effexor for many years now and it I knew it was losing its effectiveness.  If I hadn't decided to taper off, I would have been back to the doc asking for something different.  The depression I am dealing with now is withdrawal from the drug.  And yes, I am at a low dose, but it is in the low dose range that most of the brain changes happen.  So I don't want to just quit now, since it I'm having such a hard time at present.  You may be experiencing more withdrawal now that you are getting down in dosage.

I have been divorced for 30 years and live alone.  Being single was fine by me after 11 years in an unhappy marriage.  But now that I am older (and retired), I wish I were married, that I had someone.  So even though your husband drives you up the wall most of the time, it is good you have him.  It must be so difficult for a spouse to go through this.   

I do try to get sunshine, I know it is important.  I could do better at that.  My energy / motivation have been in the basement for years, so it's been a challenge, and I tend to be lazy.  Pacific Northwest weather - Summer is good for sunshine.  It can be cloudy most days from late fall through spring.  And days are very short in the winter months.

I have always dreamed of seeing New Zealand!  Where is your permanent home?

We bought a house in the Waikato just to rent out, the one we had before that had to many gardens etc for renting.

It sounds like you need to socialize more even though you don't have the energy, but it is a vicious cycle if you don't get out.

I can't talk I am an introvert and don't feel comfortable with people and I am happiest in my own little bubble.

I'm not even great with family but have excepted that's who I am and don't put pressure on myself to be otherwise.

If you feel you need the company of others try and find something that you enjoy that can full these needs without adding more pressure, what do you enjoy doing? You said piano playing that sounds wonderful is there anything else you could try like a gym or dancing, volunteer work or gardening.

Even justing planning to start something when you feel stronger may help.

I'm working on finding acceptance rather than a reason for the way I am.

I do wonder how much thyroid illness effects mental health though. 

 

[Sebas]

8 hours ago, Tuikea said:

I had all your symptoms you are having now before I even started to taper, the drug just isn't helping me that's why I decided to taper.

It's called ssri poop out.

 

8 hours ago, Tuikea said:

I didn’t want to spend what unknown time I have left tapering.

Unfortunately we cannot speed up the time that is needed for a proper and safe taper.

 

5 hours ago, Jane318 said:

You are doing really well I think, considering such a fast taper

If you taper too fast than wd can catch up with you, even months after. Lot of people on this website had to find out.  Feeling okay today is no guarantee that you will be feeling okay on midterm. Just to inform you.

 

5 hours ago, Jane318 said:

If I hadn't decided to taper off, I would have been back to the doc asking for something different. 

Tapering is a good decision. We cannot just trade one ssri for another without getting in trouble.

 

5 hours ago, Jane318 said:

  So I don't want to just quit now, since it I'm having such a hard time at present.

That wouldn't be wise indeed. During your taper which - like you already discovered - had been way too abrupt, your CNS was also not getting monthly stabilisation periods. We normally recommend 1 month/4 weeks taper, then 2 weeks stabilisation before continuing taper. Like Emonda already analysed it has catched up with you.

 

Either way you proceed there will be long term destabilisation and withdrawal. You could hold current dose or go up a few. We call this reinstatement.  Going back to last dose will not be enough to cover up current symptoms.

 

Will get back to you later today.

[Sebas]

Hi @Jane

 

Here's some guidance.

 

It's true that tapering happens in a hyperbolic way. That doesn't mean however that we can manage each taper with a hyperbolic taper schedule. Gp's, psychiatrists and pharmacists may think so.

Hyperbolic just means that, during a taper that is pursued in the way that is recommended, the lower you go, the smaller the dose change becomes. In between we have to listen to our bodies and frequently adjust.

 

Reading your file i noticed several things that probably alltogether are the cause of your current symptoms (just to provide some insights);

Besides the taper rate, dose and not being well aware of necessary stabilisation holds, the introduction of 5-HTP may have disturbed serotonine levels.

 

Say you had done a taper at 10% rate (most people go at even lower rates ranging from 1-5%) with stabilisation periods then today you would be at approximately 30-40 mg. You have made a shortcut tot 1.4 mg and withdrawal symptoms have been piling up in the background. Especially when being on ssri for many years our body's have gotten used to it and need time and patience to reprocess. It's not a race, it's more about managing the taper in the least shocking way.

 

FFWD to current situation, in my opinion there are two options;

1.  Holding at current dose, it may take a long time for your body and CNS to stabilize and withdrawal symptoms can be very challenging. Do not introduce new drugs or supplements.

2. Reinstatement at a higher dose. Sometimes reinstatement, especially shot after can provide some relief since our body will get some more ssri support. However, your CNS will be at risk for counter shock, since Effexor is a very potent drug. Reinstatement would in my opinion be in 1.5-2.5 mg range, perhaps around 2 mg.

 

I suggest you search this website for "(effexor) reinstatement" and see if any moderator has second opinion advice about recommended reinstatement dose.

 

Bye Sebas

[Jane318]

7 hours ago, Sebas said:

Hi @Jane

 

Here's some guidance.

 

It's true that tapering happens in a hyperbolic way. That doesn't mean however that we can manage each taper with a hyperbolic taper schedule. Gp's, psychiatrists and pharmacists may think so.

Hyperbolic just means that, during a taper that is pursued in the way that is recommended, the lower you go, the smaller the dose change becomes. In between we have to listen to our bodies and frequently adjust.

 

Reading your file i noticed several things that probably alltogether are the cause of your current symptoms (just to provide some insights);

Besides the taper rate, dose and not being well aware of necessary stabilisation holds, the introduction of 5-HTP may have disturbed serotonine levels.

 

Say you had done a taper at 10% rate (most people go at even lower rates ranging from 1-5%) with stabilisation periods then today you would be at approximately 30-40 mg. You have made a shortcut tot 1.4 mg and withdrawal symptoms have been piling up in the background. Especially when being on ssri for many years our body's have gotten used to it and need time and patience to reprocess. It's not a race, it's more about managing the taper in the least shocking way.

 

FFWD to current situation, in my opinion there are two options;

1.  Holding at current dose, it may take a long time for your body and CNS to stabilize and withdrawal symptoms can be very challenging. Do not introduce new drugs or supplements.

2. Reinstatement at a higher dose. Sometimes reinstatement, especially shot after can provide some relief since our body will get some more ssri support. However, your CNS will be at risk for counter shock, since Effexor is a very potent drug. Reinstatement would in my opinion be in 1.5-2.5 mg range, perhaps around 2 mg.

 

I suggest you search this website for "(effexor) reinstatement" and see if any moderator has second opinion advice about recommended reinstatement dose.

 

Bye Sebas

 

Sebas,

 

Thank you so much for taking the time to review my taper history and this reply.  It is SOOO helpful.  I WISH I had discovered this website before I began this process, but here I am.  And not in a good place.

 

As a first step, I have now gone back to previous dose - 1.44. mg - for past couple days.  somewhere here I read you shouldn't up-dose by more than 10%.  So that would put me at 1.5 mg.  You are suggesting more, which I am good with as long as that is the right thing to do.  I will search the website as you suggest for other opinions.  And understand I have to just hang in there for however long it takes - months most likely.

 

Thank you again so much.  I intend to post progress / lessons learned as I go.

Jane

[Jane318]

16 hours ago, Tuikea said:

We bought a house in the Waikato just to rent out, the one we had before that had to many gardens etc for renting.

It sounds like you need to socialize more even though you don't have the energy, but it is a vicious cycle if you don't get out.

I can't talk I am an introvert and don't feel comfortable with people and I am happiest in my own little bubble.

I'm not even great with family but have excepted that's who I am and don't put pressure on myself to be otherwise.

If you feel you need the company of others try and find something that you enjoy that can full these needs without adding more pressure, what do you enjoy doing? You said piano playing that sounds wonderful is there anything else you could try like a gym or dancing, volunteer work or gardening.

Even justing planning to start something when you feel stronger may help.

I'm working on finding acceptance rather than a reason for the way I am.

I do wonder how much thyroid illness effects mental health though. 

 

 

Thank you for your suggestions / help.  We are both introverts - socializing can be excruciating even when we feel good.  Right now, I can do short periods with one or two people, and I am seeking that out more actively, because it really helps.  Even if I don't feel like it, it helps because if nothing else, it distracts from all the negative thinking that goes on when alone.  There is a woman in my church who went through this several years ago and she is now "walking with me" with her insights and spiritual guidance that helped her get through it.  I also learned that she went a lot more slowly than I did.  Not because she knew more, she just listened to her body and her God before making the next cut.  And it was still very difficult - she hardly left her home for two years.  She was also on more meds than I am.  But at least I know someone personally who has gone through this and knows what it is like, does not judge.  I will think about something else I can do to add socialization without adding more pressure.  Hard to do when I don't enjoy anything right now.  But will work on a plan as you suggest - always a good idea.  Thyroid illness (and other hormonal imbalances) DO affect our moods big time - low energy / low motivation / loss of interest in activities, etc. are common symptoms of hypothyroidism, which is my diagnosis.  To top it all off, I have tried some different thyroid meds this past year too.  I now know I really set myself up.  Again, I appreciate your perspective, and I hope you will keep me posted on how you are doing.  I will be praying for us both.

[Tuikea]

2 hours ago, Jane318 said:

 

Thank you for your suggestions / help.  We are both introverts - socializing can be excruciating even when we feel good.  Right now, I can do short periods with one or two people, and I am seeking that out more actively, because it really helps.  Even if I don't feel like it, it helps because if nothing else, it distracts from all the negative thinking that goes on when alone.  There is a woman in my church who went through this several years ago and she is now "walking with me" with her insights and spiritual guidance that helped her get through it.  I also learned that she went a lot more slowly than I did.  Not because she knew more, she just listened to her body and her God before making the next cut.  And it was still very difficult - she hardly left her home for two years.  She was also on more meds than I am.  But at least I know someone personally who has gone through this and knows what it is like, does not judge.  I will think about something else I can do to add socialization without adding more pressure.  Hard to do when I don't enjoy anything right now.  But will work on a plan as you suggest - always a good idea.  Thyroid illness (and other hormonal imbalances) DO affect our moods big time - low energy / low motivation / loss of interest in activities, etc. are common symptoms of hypothyroidism, which is my diagnosis.  To top it all off, I have tried some different thyroid meds this past year too.  I now know I really set myself up.  Again, I appreciate your perspective, and I hope you will keep me posted on how you are doing.  I will be praying for us both.

It great to have a friend that has been through this to talk to.

What thyroid meds did you change this could be important to sort out, was it a brand change? If so I would be changing back but in saying that this is a bad time to change anything. Have you had a test lately to check your thyroid levels, this would be a good place to start.

[Jane318]

5 minutes ago, Tuikea said:

It great to have a friend that has been through this to talk to.

What thyroid meds did you change this could be important to sort out, was it a brand change? If so I would be changing back but in saying that this is a bad time to change anything. Have you had a test lately to check your thyroid levels, this would be a good place to start.

I was diagnosed hypothyroid and put on 75 mcg Levothyroxine in early 2021 - this was year after completing chemo for colon cancer.  Levo got my TSH in "normal" band, so my MD (at the time) was satisfied, as TSH was all he looked at.  Physically, I did feel better, but I still continued to struggle with fatigue and other symptoms of hypothyroid.  Other testing I did on my own indicated low T3.   Saw a naturopath (ND) in October 2022 who tried adding T3, but didn't help as far as I could tell, so I stopped taking it after about six weeks.  Continued on 75 mcg Levo.  Started Effexor taper Feb 26 2023.   Consulted another naturopath in September 23 and she put me on NP Thyroid, which purportedly contains both T4 and T3 and I thought might be a better option for me.  However, NP thyroid totally messed me up - Test results for everything (TSH, T4, T3) were way out of whack.  So seemed pretty clear I should go back on Levo.  But before I did that, I decided to try going without any thyroid meds and give my body a chance to kick my thyroid back in - I had been diagnosed hypothyroid within the year of completing chemo, and low thyroid is natural consequence of prolonged illness.  So I thought now that I was healthy, maybe my thyroid would work okay on its own, given a chance.  Well - that probably would have been an okay experiment to do but NOT, I now realize, when I was tapering off Effexor at the same time!  I had been tolerating the taper okay - although I now know I was going to quickly and it was going to catch up with me.  And stopping thyroid meds - even though the NP thyroid wasn't helping - certainly made things worse.  Did another test in June - TSH higher than it had ever been - and my M.D. (and functional medical doctor) recommended and I agreed to go back on Levo.  Have been back on 75 mcg Levo - original drug and dose - now for about six weeks, and have a follow up visit with her this week.  She will probably want to test my TSH levels again.  I can't tell if it is helping because of this withdrawal pit I am in.  I suspect my thyroid test results will still be suboptimal.  But thinking I should probably just stay put here for a while to give my body a chance to catch up with all these changes.  I have to mostly figure these things out on my own - she is great, but I am educating her on AD detox.  Give her the research on hyperbolic tapering, etc, and she accepts it.  Hopefully coming up to speed.  But she is not where this forum is.

[Tuikea]

1 hour ago, Jane318 said:

I was diagnosed hypothyroid and put on 75 mcg Levothyroxine in early 2021 - this was year after completing chemo for colon cancer.  Levo got my TSH in "normal" band, so my MD (at the time) was satisfied, as TSH was all he looked at.  Physically, I did feel better, but I still continued to struggle with fatigue and other symptoms of hypothyroid.  Other testing I did on my own indicated low T3.   Saw a naturopath (ND) in October 2022 who tried adding T3, but didn't help as far as I could tell, so I stopped taking it after about six weeks.  Continued on 75 mcg Levo.  Started Effexor taper Feb 26 2023.   Consulted another naturopath in September 23 and she put me on NP Thyroid, which purportedly contains both T4 and T3 and I thought might be a better option for me.  However, NP thyroid totally messed me up - Test results for everything (TSH, T4, T3) were way out of whack.  So seemed pretty clear I should go back on Levo.  But before I did that, I decided to try going without any thyroid meds and give my body a chance to kick my thyroid back in - I had been diagnosed hypothyroid within the year of completing chemo, and low thyroid is natural consequence of prolonged illness.  So I thought now that I was healthy, maybe my thyroid would work okay on its own, given a chance.  Well - that probably would have been an okay experiment to do but NOT, I now realize, when I was tapering off Effexor at the same time!  I had been tolerating the taper okay - although I now know I was going to quickly and it was going to catch up with me.  And stopping thyroid meds - even though the NP thyroid wasn't helping - certainly made things worse.  Did another test in June - TSH higher than it had ever been - and my M.D. (and functional medical doctor) recommended and I agreed to go back on Levo.  Have been back on 75 mcg Levo - original drug and dose - now for about six weeks, and have a follow up visit with her this week.  She will probably want to test my TSH levels again.  I can't tell if it is helping because of this withdrawal pit I am in.  I suspect my thyroid test results will still be suboptimal.  But thinking I should probably just stay put here for a while to give my body a chance to catch up with all these changes.  I have to mostly figure these things out on my own - she is great, but I am educating her on AD detox.  Give her the research on hyperbolic tapering, etc, and she accepts it.  Hopefully coming up to speed.  But she is not where this forum is.

Interesting, I went down the natural thyroid road 10 years ago and ended up the same totally out of wack. I had radio active iodine about 30 years ago hence my need for Synthroid.

Have a read up on Synthroid and Levo and see what you think.

You body has been through so much time for rest.

[Jane318]

On 7/14/2024 at 10:55 AM, Sebas said:

Hi @Jane

 

Here's some guidance.

 

It's true that tapering happens in a hyperbolic way. That doesn't mean however that we can manage each taper with a hyperbolic taper schedule. Gp's, psychiatrists and pharmacists may think so.

Hyperbolic just means that, during a taper that is pursued in the way that is recommended, the lower you go, the smaller the dose change becomes. In between we have to listen to our bodies and frequently adjust.

 

Reading your file i noticed several things that probably alltogether are the cause of your current symptoms (just to provide some insights);

Besides the taper rate, dose and not being well aware of necessary stabilisation holds, the introduction of 5-HTP may have disturbed serotonine levels.

 

Say you had done a taper at 10% rate (most people go at even lower rates ranging from 1-5%) with stabilisation periods then today you would be at approximately 30-40 mg. You have made a shortcut tot 1.4 mg and withdrawal symptoms have been piling up in the background. Especially when being on ssri for many years our body's have gotten used to it and need time and patience to reprocess. It's not a race, it's more about managing the taper in the least shocking way.

 

FFWD to current situation, in my opinion there are two options;

1.  Holding at current dose, it may take a long time for your body and CNS to stabilize and withdrawal symptoms can be very challenging. Do not introduce new drugs or supplements.

2. Reinstatement at a higher dose. Sometimes reinstatement, especially shot after can provide some relief since our body will get some more ssri support. However, your CNS will be at risk for counter shock, since Effexor is a very potent drug. Reinstatement would in my opinion be in 1.5-2.5 mg range, perhaps around 2 mg.

 

I suggest you search this website for "(effexor) reinstatement" and see if any moderator has second opinion advice about recommended reinstatement dose.

 

Bye Sebas

Thank you again for looking over my history so carefully and for the recommendations. Thank you for the search tip - I did this and read through six pages of posts, which was very helpful.  From all of this, by way of update, this is what I am doing now:

1.  13 July - reinstated/up-dosed Venlafaxine (Effexor) to next highest dose - I was at 1.35 mg/day, updosed to 1.44. 

2.  Daily Monitoring for improvement using the Daily Checklist.  Seems I have seen some improvement already.  Will wait 10-14 days to make sure.  If improved, will sit here for as long as it takes to stabilize - probably 4-5 months.  If not improved, will go back to next highest dose and monitor in same way.

3.  Keeping my solution in fridge, dark container, no longer than 7 days.  Before, I kept on shelf at room temp and used till it was gone - typically 2 weeks.

4.  Taking half in the morning, half in the evening.  I need to set an actual schedule, not just when I wake up (which varies) or whenever I think about it in the evening.

5.  Stopped taking creatine supplement, which I had recently started (supposed to help with depression) - will not add / change any supplements in foreseeable future.

 

I would value any other insights.  I will post updates as I go.  Words cannot express my gratitude for this site.  Would love to help if there is a way I can.

[Sebas]

2 hours ago, Jane318 said:

.  If not improved, will go back to next highest dose and monitor in same way.

 

Hi Jane, upping many times successively can make CNS even more volatile. CNS will benefit in current situation from long time stability. If you would decide to updose further more then it should be a one time thing and then hold. At least in my opinion.

 

2 hours ago, Jane318 said:

Keeping my solution in fridge, dark container, no longer than 7 days.  Before, I kept on shelf at room temp and used till it was gone - typically 2 weeks.

How exactly you make this solution? Most selfmade liquid (pil and water) is good for 3 max 4 days in the fridge.

 

Bye Sebas

[Jane318]

2 hours ago, Sebas said:

upping many times successively can make CNS even more volatile. CNS will benefit in current situation from long time stability. If you would decide to updose further more then it should be a one time thing and then hold. At least in my opinion.

Thank you for this.  I will stay at current dose as long as necessary.  I do feel that it is helping already.

 

2 hours ago, Sebas said:

How exactly you make this solution? Most selfmade liquid (pil and water) is good for 3 max 4 days in the fridge.

 

First, I take Venlafaxine HCL (V-HCl) tablets (not XR).  I pulverized several tablets in a spice grinder and keep the powder stored in the med bottle in the dark, taking out from this container when I make new solutions.  I use the Gemini 20 Portable MG scale.  One pill weighs 0.155 mg, which is 37.5 mg V-HCl.  So 0.242 gm of V-HCl per mg of tablet.  Here is my formula for current dose:  119 mg ground tablet powder, plus 1 tsp salt, dissolved in 1 L water.*  From this, I take 50 ml per day, 25 ml in morning, 25 ml at night.  I have assumed solution was stable based on:  https://onlinelibrary.wiley.com/doi/abs/10.1002/j.2055-2335.2008.tb00841.x.  There may be difference between stability of solutions made from the tablets vs XR form.   Would value any other sources you have.

 

*I add a bit of sea salt to my solutions because one source I found said this:  "Venlafaxine hydrochloride is a white to off-white crystalline solid with a solubility of 572 mg/mL in water (adjusted to ionic strength of 0.2 M with sodium chloride)."  Wanted to make sure all the med dissolved.  I still end up with some particulates that do not dissolved, which I attribute to the binder materials.

[Sebas]

Seems you are well prepared and 30 days should be fine from what i read from Alto's Effexor thread ⬇️ 

 

[Jane318]

11 hours ago, Sebas said:

Seems you are well prepared and 30 days should be fine from what i read from Alto's Effexor thread ⬇️ 

Thank you Sebas for confirmation and this link - so grateful!

 

[Jane318]

Another question if I may. 

 

Thoughts on adding Lithium Orotate as a supplement (https://beyondmeds.com/2017/01/22/remineralization/)?  I suspect the answer is "not now," but would value your thoughts.

 

I do take - and have for some time - Magnesium, fish oil, Vitamin E, taurine, boron, and a few other supplements.  Also potassium in the form of an "adrenal cleanse" - cream of tartar, celtic sea salt dissolved in water taken with whole food Vitamin C.   I also drink lots of filtered water with mineral drops.  These are per The Root Cause Protocol (https://therootcauseprotocol.com/), which I adopted more than a year before beginning tapering. 

 

Thank you again, Jane 

[Sebas]

Hi Jane,

 

please read: https://www.drugs.com/drug-interactions/lithium-with-paroxetine-1477-0-1800-0.html?professional=1

 

Also recommend stopping taurine for the time being due to its amino acid/neurotransmitter/antidepressant effect. It may be hard for an already destabilised CNS to stabilize when there are several sources. But this can be very different from one person to another and one situation to another. It's from risk minimalisation point of view.

 

Bye Sebas

[Jane318]

2 minutes ago, Sebas said:

Hi Jane,

 

please read: https://www.drugs.com/drug-interactions/lithium-with-paroxetine-1477-0-1800-0.html?professional=1

 

Also recommend stopping taurine.

 

Bye Sebas

Thank you!  May look at Li Orotate once I am completely off Venlafaxine and table, if depression recurs.  Will add Taurine to the list of supplements I now take that I will be stopping / reducing - one a time.

[Jane318]

Just brief update at one week since reinstatement to next highest dose.  Doing better than a week ago for sure.  Filling out the Appendix 1 Daily Checklist each day, and it is so helpful - definitely seeing the "windows and waves" pattern already.  Global assessment a week ago was 9, today about 6. 

 

Still dealing with fatigue; no motivation; no enjoyment of anything; difficulty concentrating / remembering; and feeling totally detached from everything / everyone.  But am making effort to be with people when I can and pushing myself to do long overdue chores, especially those that don't require a lot of mental energy.  Actually got several of those chores done last week.  Had to drop piano lessons for now, though, due to lack of ability to concentrate / focus and just general emotional upheaval that affects practice / playing.  I hope I will someday feel like starting up again.   Helpful to read posts of people who have gone / are going through this - and YouTube videos, such as Angie Peacock.  Trying to have hope that I will one day feel like myself again. At any rate, I don't think I can go back without messing myself up even more.  In the meantime, know I just have to act normal and respond to people appropriately even though I don't feel like it -  I have to pretend right now...  

[Sebas]

9 hours ago, Jane318 said:

Still dealing with fatigue; no motivation; no enjoyment of anything; difficulty concentrating / remembering; and feeling totally detached from everything / everyone. 

This is typical for serotonine disbalance/shortage/fluctuations. Remember it's not really you, it's the withdrawal taking over.

 

9 hours ago, Jane318 said:

But am making effort to be with people when I can

9 hours ago, Jane318 said:

In the meantime, know I just have to act normal and respond to people appropriately even though I don't feel like it -  I have to pretend right now...  

You could inform your close friends that you are in protracted withdrawal from too fast drug taper. Tell them you are getting guidance and it will take time to heal and there's no short term easy solution. Your behaviour can be different during recovery whilst CNS is out of balance and you need to reduce stressful events.

 

 

9 hours ago, Jane318 said:

At any rate, I don't think I can go back without messing myself up even more

I don't think that given the current circumstances, this would be wise indeed.

9 hours ago, Jane318 said:

Had to drop piano lessons for now, though, due to lack of ability to concentrate / focus and just general emotional upheaval that affects practice / playing

Maybe for the time being there are alternatives. Some people enjoy swimming, painting, gardening or walking outside as occupational therapy. 

 

9 hours ago, Jane318 said:

definitely seeing the "windows and waves" pattern already

this could be your next tattoo

 

Bye Sebas

[Jane318]

4 hours ago, Sebas said:

You could inform your close friends that you are in protracted withdrawal from too fast drug taper. Tell them you are getting guidance and it will take time to heal and there's no short term easy solution. Your behaviour can be different during recovery whilst CNS is out of balance and you need to reduce stressful events.

Thank you - Yes, I have done / am doing so.  As you likely know, it is still difficult for people to understand.  But at least, hopefully, it answers some questions and helps prevent anyone from taking it personally.  For me, as a pretty extreme introvert, stressful events have always included large social gatherings, and so much more now.  This includes even attending church services - I used to be so active and could be outgoing there when I felt good.  So hard now, and people notice...look at me differently.  With real concern, it is a loving community.  I just can't deal with a lot of people now.  And there is some shame with admitting I was on ADs and am now in withdrawal.  It is part of "getting over myself" I guess, which in the long run is a good thing.  Just enormously painful right now.

 

4 hours ago, Sebas said:

Maybe for the time being there are alternatives. Some people enjoy swimming, painting, gardening or walking outside as occupational therapy. 

Problem is, I don't enjoy anything right now.  I do gardening and walking, but it's because I have to or force myself to.  I used to enjoy sewing, knitting, reading, writing, baking, cooking, etc., etc.  I can't think of anything I enjoy right now.  I am told and truly this improves with time.  In the meantime, every hour is a struggle to get through.  Waking in the morning is the worst, having to face a whole new day of this...

 

4 hours ago, Sebas said:

This is typical for serotonine disbalance/shortage/fluctuations. Remember it's not really you, it's the withdrawal taking over.

Thank you for the reminder / affirmation and taking the time to provide this feedback, Sebas!  Blessings - Jane

[Sebas]

16 hours ago, Jane318 said:

And there is some shame with admitting I was on ADs and am now in withdrawal. 

Yes i can relate to that shame feeling. In time it gets a little less though. Sometimes i tell people there are some medical circumstances going on which upset my CNS and immune system. When they ask detailed questions i just answer it's complicated and stay on the level. 

 

16 hours ago, Jane318 said:

Waking in the morning is the worst, having to face a whole new day of this.

 

Good thing though you keep doing these activities as long as they are physically possible or course. They contribute to recovery and mindset.

 

Bye Sebas

 

[Tuikea]

Hi Jane318,

I am wondering how you are feeling today.

[Jane318]

11 hours ago, Tuikea said:

Hi Jane318,

I am wondering how you are feeling today.

Tuikea - Thank you for thinking of me.  I am doing better than I was a couple weeks ago for sure.  Now at almost two weeks since reinstating at higher dose.  Today, just feeling exhausted and emotionally numb, more than my current normal, which I think might be an aftermath of an extra busy day yesterday.  

[Tuikea]

2 hours ago, Jane318 said:

Tuikea - Thank you for thinking of me.  I am doing better than I was a couple weeks ago for sure.  Now at almost two weeks since reinstating at higher dose.  Today, just feeling exhausted and emotionally numb, more than my current normal, which I think might be an aftermath of an extra busy day yesterday.  

Sounds like you have earned a rest today. What's happening with thyroid meds?

[Jane318]

44 minutes ago, Tuikea said:

Sounds like you have earned a rest today. What's happening with thyroid meds?

Currently at 75 mcg levothyroxine.  Most recent labs show my TSH is much improved since re-starting a couple months ago, but still somewhat high.  Conversion rate (T4 to T3) is only about 11%, when ideal is around 33% per my M.D.  This is consistent with prior labs.  I just do not convert T4 to T3 well, and since it is T3 that is the active form, I still don't feel that good.  Trying to support with diet as best I can in lieu of making more med changes.  Told my doc that I am reluctant to make more changes - increase Levo and/or add T3 - given everything that is going on with withdrawal right now - want to just stay put where I am for a few more months.  I don't know if that is the right decision or now, since low thyroid also affects my mood and energy in a big way.  So difficult to say what is due to low thyroid and what is due to withdrawal.  Hard not to be depressed over that alone!  How about you?

[Tuikea]

7 hours ago, Jane318 said:

Currently at 75 mcg levothyroxine.  Most recent labs show my TSH is much improved since re-starting a couple months ago, but still somewhat high.  Conversion rate (T4 to T3) is only about 11%, when ideal is around 33% per my M.D.  This is consistent with prior labs.  I just do not convert T4 to T3 well, and since it is T3 that is the active form, I still don't feel that good.  Trying to support with diet as best I can in lieu of making more med changes.  Told my doc that I am reluctant to make more changes - increase Levo and/or add T3 - given everything that is going on with withdrawal right now - want to just stay put where I am for a few more months.  I don't know if that is the right decision or now, since low thyroid also affects my mood and energy in a big way.  So difficult to say what is due to low thyroid and what is due to withdrawal.  Hard not to be depressed over that alone!  How about you?

I am on the same dose my doctor only checks TSH. It's complicated 😕