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brot30: ME/CFS and POTS - connection?

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brot30

Dear all,

 

Is there anyone out there that became terribly ill with ME/CFS and/or POTS after SSRI withdrawal like me?

 

This is my story, kept very short:

 

Have been on 75mg Effexor for 7 years, starting being only 20 years old,... . Stopped cold turkey, 6 months later came down with a borderline psychotic episode. I reinstated Effexor and slowly withdraw from it again after 6 months, became worse again and started very low dose Seroquel 100 mg (very low dose if you consider my symptoms, most are lingering around today, nearly 4 years later), changed to Zooloft 50mg and felt gradually better (?), stopped with a slow withdrawal (8-10 months? I have never been to neat with my records unfortunately, besides my time perception is REALLY OFF) because I do not want to take toxic **** for the rest of my life. 


6 months later, in summer 2016 I became a high fever and bedridden after a little injury, and an infection (and therefore antibiotics and a vaccine (no, I am not anti vaccine)) on my food and to this day I am bedridden.

 

I got diagnosed with severe POTS and ME/CFS in Stanford in 2016. I am completely off all medication now. I am 90% bound to bed and 95% housebound. 

 

ME/CFS is strongly tied to Serotonine and Serotonergic Receptors. ME/CFS very often starts in people after a viral insult or an extremely stressful situation combined with some sort of physical insult. Some researchers say that it is strongly tied to Gulf War Syndrome. (Recipe for both: Severe Stress + Physical Insult)

 

Being super easily stressed out (by everything that you could imagine) and therefore being wired and tired all the time is on of my main symptoms that I would tie to some sort of neurological accident due to SSRI withdrawal or taking it for 7 years. My thought are racing all the time, maybe you can actually "feel" that by reading these lines.

 

I am thinking of reinstating every day but I am afraid to do so. Do not know whether it will make me even worse. Is there someone who has a clue or at least a hypotheses about what could be the mechanism behind my issues and wheter or not I should try to reinstate after 1 year being completely off of all medication?

 

 

This is the latest research that is coming out in ME/CFS (a terribly underfunded disease when it comes to research):

 

https://www.healthrising.org/blog/2018/02/08/cortene-way-new-drug-trialed-chronic-fatigue-syndrome-mecfs-soon-pt/

 

 

 

 

Being grateful for any kind of input,

 

 

Christoph

 

 

 

 

 

 

 

 

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brot30

I have been damaged from taking Effexor for 7 years, I stopped 4 years ago, never been the same, still deteoriating physically (not so psychologically, I am 70% premedication, something you can live with), potentially from another cause, I will never be certain what is what.

 

These drugs are doing no good.

Psychologically, cognitively I think most of the stuff we experience is reversible. Physical ailments (like autoimmune disease, pots, me/cfs and others)  that get triggered by this immense burden that is caused by withdrawal is less likely to repair itself.
 

(at least from my personal experience and what I have found in the literature but also in forums like this one.)

 

All the best.

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Altostrata

Welcome, brot.

 

Many people here have suffered various symptoms of autonomic dysfunction, such as POTS, and all kinds of sensitivities and definitely a lot of fatigue. These are related to withdrawal syndrome. Withdrawal syndrome causes dysautonomia, which may be manifested in many different ways.

 

Very few physicians can recognize withdrawal syndrome; it gets misdiagnosed very often. You may or may not truly have ME/CFS, which is another condition that's difficult to diagnose. I would take a "serotonin" explanation with a grain of salt.

 

Sometimes people have other medical conditions which become worse or harder to cope with because of withdrawal syndrome. Going on and off psychiatric drugs can make your nervous system more vulnerable. We have quite a few members whose withdrawal syndrome got worse after a course of antibiotics.

 

Aside from drugs, recovering from withdrawal syndrome is very much like recovering from dysautonomia. We don't quite know what will work. What we see is very slow, frustrating progress towards neurological stability -- if you help it along and don't do anything to shake it up.

 

How did you go off Zoloft? Did you have any withdrawal symptoms while you were doing this? Are you taking any drugs now?

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ChessieCat

Hi brot and welcome from me too,

 

We ask all members to create a drug signature.  Please update it whenever you make a change.  Please keep it nice and simple.  We only need details for the last 2 years.  Date, drug and dose only, no symptoms or diagnoses.  The other years can just be an overview.  

 

This is the preferred format which is helpful for the mods.  Thank you.

 

A request: Would you summarize your history in a signature - ALL drugs, doses, dates, and discontinuations & reinstatements, in the last 2 years particularly?

  • Please leave out symptoms and diagnoses.
  • list is easier to understand than one or multiple paragraphs. 

 

 

Here is SA's topic about  Non-drug techniques to cope

 

There are many existing topics and discussions on this site, including ME/CFS, POTS, autonomic dysfunction.   You can use the site search function on the main page of the site at the top right, or use a search engine and include survivingantidepressants.org in your search string.

 

This is your own Intro topic where you can ask questions and journal your progress.  We suggest that members visit each others Intro topics so that can support and encourage each other.

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brot30
9 hours ago, Altostrata said:

Welcome, brot.

 

Many people here have suffered various symptoms of autonomic dysfunction, such as POTS, and all kinds of sensitivities and definitely a lot of fatigue. These are related to withdrawal syndrome. Withdrawal syndrome causes dysautonomia, which may be manifested in many different ways.

 

Very few physicians can recognize withdrawal syndrome; it gets misdiagnosed very often. You may or may not truly have ME/CFS, which is another condition that's difficult to diagnose. I would take a "serotonin" explanation with a grain of salt.

 

Sometimes people have other medical conditions which become worse or harder to cope with because of withdrawal syndrome. Going on and off psychiatric drugs can make your nervous system more vulnerable. We have quite a few members whose withdrawal syndrome got worse after a course of antibiotics.

 

Aside from drugs, recovering from withdrawal syndrome is very much like recovering from dysautonomia. We don't quite know what will work. What we see is very slow, frustrating progress towards neurological stability -- if you help it along and don't do anything to shake it up.

 

How did you go off Zoloft? Did you have any withdrawal symptoms while you were doing this? Are you taking any drugs now?

 

 

 

Hi Altostrata,

 

thank you so much for your post and your time.

 

I did a withdrawal of Zoloft in about 8-10 months, again I am not super neat with my record from this time.

 

My physical vulnerability and ailments definitely good worse after stopping the Zoloft, but it coincided with an injury, antibiotics and a vaccination, the day after the vaccination I thought I would literally die.

The problem was maybe the first time going off Effexor and then reinstating different kind of medications?

 

Actually it was like this:

 

I took Effexor for a long time (7,8years) -> withdrawal cold turkey -> reinstating Effexor after some month -> going off it again it "slow "but in a matter of 2 month -> Seroquel -> changing dosage up and down several time -> going off it cold turkey -> Started Zoloft (felt a little better mentally) and withdraw from it over about 8 month.

 

I stopped Zoloft in May last year, (I also had physical issues before with Effexor withdrawal but they were not nearly as bad) do you think I should try to reinstate?

 

Do you think it could make me worse chronically if I try?

 

 

Best,

 

Christoph

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Altostrata

Going on and off drugs repeatedly stresses the nervous system. That alone can cause dysautonomia. Add other stresses, and you might tip into ME/CFS or other related conditions.

 

Did you feel better when you were on Zoloft than you do now?

 

Physicians have a religious belief that antidepressants are helpful in any medical condition, including dysautonomia, ME/CFS, fibromyalgia, etc. but that isn't always the case. Sometimes they make it worse.

 

What is your sleep pattern?

 

On 3/26/2018 at 1:13 AM, brot30 said:

the day after the vaccination I thought I would literally die.

How soon after going off Zoloft did you have the vaccination?

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brot30
On 28.3.2018 at 6:59 AM, Altostrata said:

Going on and off drugs repeatedly stresses the nervous system. That alone can cause autonomia. Add other stresses, and you might tip into ME/CFS or other related conditions.

 

Did you feel better when you were on Zoloft than you do now?

 

Physicians have a religious belief that antidepressants are helpful in any medical condition, including dysautonomia, ME/CFS, fibromyalgia, etc. but that isn't always the case. Sometimes they make it worse.

 

What is your sleep pattern?

 

How soon after going off Zoloft did you have the vaccination?

 

 

THANK YOU so much for your response.

 

Do you think thats good or bad news? Does anyones Dysautonomia get better after AD withdrawal or does it tend to be chronic?
Usually (not connected to withdrawal of AD´s it tends to be chronic for most people as far as I know)

I felt way better phyciscally when I was on Zooloft, but that was before the infected wound, the antibiotics and the vaccination and (therefor?) ME/CFS started.

 

I was on a very low dose of Zooloft (2.5mg or 5mg) already when all this happened.

 

My sleep pattern was off for a year or so, but stabilized somewhat, I do sleep 8-9 hours a night, I do not have a very deep sleep and I do not wake up refreshed, but I do sleep.

 

PS: I think that I had some kind of predisposition for POTS even before I started SSRI (slightly higher heartrate than usual person even though I was a runner), but it was not an issue at all.

 

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Altostrata
2 hours ago, brot30 said:

I think that I had some kind of predisposition for POTS even before I started SSRI

 

This may be so.

 

Dysautonomia can spontaneously resolve. Coincidentally, except for taking psychiatric drugs, treatment of dysautonomia is exactly the same as that for many withdrawal symptoms -- as they are also autonomic dysfunctioning.

 

On 3/23/2018 at 4:36 AM, brot30 said:

wired and tired

 

Very, very common withdrawal symptomology, as well as being hypersensitive to all kinds of stimuli. If you are sensitive to light, for example, you may wish to wear sunglasses even indoors, and dim lights at all times.

 

It is possible that withdrawal syndrome explains some of your symptoms. If you would like to try reinstating a very low dose of Zoloft, such as 0.5mg, this topic explains how  Tips for tapering off Zoloft (sertraline) Zoloft comes in a liquid form.

 

To help us out, see these instructions Please put your drug and withdrawal history in your signature

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brot30
On 30.3.2018 at 11:21 PM, Altostrata said:

 

This may be so.

 

Dysautonomia can spontaneously resolve. Coincidentally, except for taking psychiatric drugs, treatment of dysautonomia is exactly the same as that for many withdrawal symptoms -- as they are also autonomic dysfunctioning.

 

 

Very, very common withdrawal symptomology, as well as being hypersensitive to all kinds of stimuli. If you are sensitive to light, for example, you may wish to wear sunglasses even indoors, and dim lights at all times.

 

It is possible that withdrawal syndrome explains some of your symptoms. If you would like to try reinstating a very low dose of Zoloft, such as 0.5mg, this topic explains how  Tips for tapering off Zoloft (sertraline) Zoloft comes in a liquid form.

 

To help us out, see these instructions Please put your drug and withdrawal history in your signature

Hi again,

 

I cant even say how grateful I am for your responses, there is basically nobody else who would or could help me with that.

 

Would you really start with such a low dosage? I know everybody is different and you have to take care with what you say, but 0.5 mg is very low, isn´t it?

 

I will definitely try to reinstate the 0.5 mg very soon, what do you think will be the plan if it somehow "works" for me, and what if it does nothing? 

 

Should I work my way back up further then? And after which time if you had to guess do I know if it does something or not?

 

 

Thank you so much,

 

Christoph

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Altostrata

We have many people here who have reinstated tiny dosages. Often that's all a sensitized nervous system can stand.

 

If it "works," hurray. Stay there for a good while and let your nervous system do its work, with that tiny bit of help.

 

If it doesn't do anything, maybe a little more might be called for.

 

If you quickly get a bad reaction, stop immediately.

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ChessieCat

It's a good idea to keep daily notes on paper so you can assess whether reinstatement is helping.  This is the suggested format:

 

Keep notes on paper about your drug dosages and daily symptom pattern

 

A symptom pattern that occurs regularly over several days could mean the symptoms are from withdrawal, other adverse effects of drugs, or something else you do on a daily schedule.

 

In the course of discussion in your Introductions forum topic, you may be asked to keep notes on paper of your daily symptom pattern, including when you take your drugs, their dosages, and any symptoms.

 

What we need to see for every individual day over several days is:

- Time and dosage for drugs taken in morning
- Time and description of any symptoms in the morning
 
- Time and dosage for drugs taken in afternoon
- Time and description of any symptoms in the afternoon
 
- Time and dosage for drugs taken in evening
- Time and description of any symptoms in the evening
 
- Time and dosage for drugs taken in middle of the night
- Time and description of any symptoms in the middle of the night (such as waking)
 
And so forth. A diary, in chronological order, such as:
 
6 a.m. Woke and vomited
8 a.m. Took 2.5mg Lexapro
10 a.m. Had diarrhea
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Stomachache
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Headache got worse
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke with headache

 

An appointments diary is perfect for this and can be bought at stationery stores. 

They have a page for each day with times for appointments which can be filled in with doses, symptoms etc as shown by Alto.

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brot30
19 hours ago, Altostrata said:

We have many people here who have reinstated tiny dosages. Often that's all a sensitized nervous system can stand.

 

If it "works," hurray. Stay there for a good while and let your nervous system do its work, with that tiny bit of help.

 

If it doesn't do anything, maybe a little more might be called for.

 

If you quickly get a bad reaction, stop immediately.

 

14 hours ago, ChessieCat said:

It's a good idea to keep daily notes on paper so you can assess whether reinstatement is helping.  This is the suggested format:

 

Keep notes on paper about your drug dosages and daily symptom pattern

 

A symptom pattern that occurs regularly over several days could mean the symptoms are from withdrawal, other adverse effects of drugs, or something else you do on a daily schedule.

 

In the course of discussion in your Introductions forum topic, you may be asked to keep notes on paper of your daily symptom pattern, including when you take your drugs, their dosages, and any symptoms.

 

What we need to see for every individual day over several days is:

- Time and dosage for drugs taken in morning
- Time and description of any symptoms in the morning
 
- Time and dosage for drugs taken in afternoon
- Time and description of any symptoms in the afternoon
 
- Time and dosage for drugs taken in evening
- Time and description of any symptoms in the evening
 
- Time and dosage for drugs taken in middle of the night
- Time and description of any symptoms in the middle of the night (such as waking)
 
And so forth. A diary, in chronological order, such as:
 
6 a.m. Woke and vomited
8 a.m. Took 2.5mg Lexapro
10 a.m. Had diarrhea
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Stomachache
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Headache got worse
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke with headache

 

An appointments diary is perfect for this and can be bought at stationery stores. 

They have a page for each day with times for appointments which can be filled in with doses, symptoms etc as shown by Alto.

 

Thank you both so much for you help. Can´t tell you this often enough.

I am not the kind of person you are, just helping a total stranger without "gaining anything from it", I hope I will get there some day.

 

Do you know people who reinstated after such a long time and had any success? 

 

Christoph

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brot30
On 9.4.2018 at 8:18 PM, Altostrata said:

We have many people here who have reinstated tiny dosages. Often that's all a sensitized nervous system can stand.

 

If it "works," hurray. Stay there for a good while and let your nervous system do its work, with that tiny bit of help.

 

If it doesn't do anything, maybe a little more might be called for.

 

If you quickly get a bad reaction, stop immediately.

 

 

Hi again,

 

I will start next week with a reinstatement, do reinstatements with different medication (and a very low dose) work? If so, what would you consider the antidepressant wich is easiest to withdraw from?

 

Thank you,

 

Christoph

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brot30

Dearl all, 

 

I am thinking about reinstatement due to extreme POTS and Dysautonomia, I am 95% bedbound for quite a time now, something like a year which is about the time I am off all medication, I think I have to try something now.

 

I was thinking about reinstatement with a different SSRI at a very low dose, what do you think about that?

 

Also, what SSRI do you guys think is the "easiest to withdraw" on average?

 

Thank you.

 

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brot30

Dearl all, 

 

I am thinking about reinstatement due to extreme POTS and Dysautonomia, I am 95% bedbound for quite a time now, something like a year which is about the time I am off all medication, I think I have to try something now.

 

I was thinking about reinstatement with a different SSRI at a very low dose, what do you think about that?

 

Also, what SSRI do you guys think is the "easiest to withdraw" on average?

 

Thank you.

 

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PoetJester

Hi brot30

 

i talked to someone on facebook who had tapered off zoloft after 13 years on it and had ended up bedbound for a year.  she reinstated a year after her taper finished  at a rather low dose like 25 mg of zoloft and later went up to 50 mg.  She had posted on the Zoloft group facebook page how the reinstatement had helped her go back to work as a yoga instructor and start a small kombucha company.  She is however, dealing with some hypersomnia issues and eczema now, but she is active and out of bed and not spending her days crying in her bedroom anymore.   

 

you might also try reading posts by Bellatrix and Bking on this site as well as far as reinstating goes.

 

poetjester

 

 

9 minutes ago, brot30 said:

Dearl all, 

 

I am thinking about reinstatement due to extreme POTS and Dysautonomia, I am 95% bedbound for quite a time now, something like a year which is about the time I am off all medication, I think I have to try something now.

 

I was thinking about reinstatement with a different SSRI at a very low dose, what do you think about that?

 

Also, what SSRI do you guys think is the "easiest to withdraw" on average?

 

Thank you.

 

 

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Altostrata
2 hours ago, PoetJester said:

she reinstated a year after her taper finished  at a rather low dose like 25 mg of zoloft and later went up to 50 mg. 

 

PoetJester, we have reminded you repeatedly that when someone's nervous system has been sensitized by withdrawal, reinstatement at such high dosages can make it worse. Please stop advising people to do this, they could get hurt. Then where will you be, answering all their questions and holding their hands every day?

 

brot, please post questions about your particular situation here in your Introductions topic. We do not crowdsource drug recommendations here.

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brot30

thank you for your help. 

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PoetJester
1 hour ago, brot30 said:

thank you for your help. 

Hi again brot30

 

bking's username is actually bking25 if you look for his post.  It's under tapering and symptoms on a thread about if reinstating worked.  there is also TikkiTikki's thread that you might read

 

poetjester

 

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