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Dysautonomia (autonomic dysregulation) - POTS, syncope, etc.


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Let's hope it was only the one time. No use to worry about it, it may never happen again. It may not be a trend.

 

You have to have more than one incident for a trend.

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

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Can anyone give any info on dysautonomia?   Seems my symptoms are bad enough to warrant this, and I'm into 32 months now   Denstar51

Hey, Denstar. I moved your topic to the Symptoms - this way you will get more traffic. I'm sure people will soon chime in with the info.

Selections from an article on about.com (emphasis mine). This doctor gives a good overview of symptoms but does not mention insomnia and hypersensitivity to sympathomimetic and parasympathomimetic dru

Are those incidents common? I mean, do many have those experiences that far out?

It just does not feel like healing...

End of 2008: Remeron 15mg for around 2 months. Unorthodox taper, no problems.
End of August 2009: Lexapro 10mg for only 4 days. Panic attack after 3 pills. Severe gastro problems in the morning for 3 days after last pill. 2 weeks later strong w/d symptoms set in.

Acute WD lasted around 3.5 years. I am feeling much better today, 5.5 years out, but still have some symptoms left.

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  • 2 years later...
NoMeaning25

Anyone know if this will work? http://blog.synergyhealthconcepts.com/new-treatment-for-dysautonomia/

 

Alto, is this actually what we are dealing with?? 

 

http://www.dinet.org/index.php/information-resources/pots-place/pots-symptoms Is withdrawal just dysautonomia or is it a combination of things?

 

Im just trying to figure out whats wrong with me so that i can at least show my mom what im dealing with and find a doctor willing to work with me. 

 

Was on Citalopram 20mg since Feb 2008 - switched to Paxil 20mg in August 2010

Tapered way too fast in April 2012 by skipping days. Taper completed in 6 weeks

Tried prozac 20mg for 3 days - felt spaced out, not better.

Tried 30mg Cymbalta for 2 days. SEVERE ADVERSE REACTION

Antidepressant free since 14 August 2012

Birth control on and off during this time - Last taken 18 June 2017 - Morning after pill 

Started mainly using 0.5mg Xanax beginning 2016 for severe panic attacks and anxiety due to trauma

Xanax on and off never more than 0.5mg at a time, never taking it 3 days in a row - used sparingly 

 

6 Years antidepressant free - Still in severe withdrawal with over 60 symptoms

Severe setback started May 2018 with no let up to date. Developed many new symptoms like tremors, inner vibrations, insomnia, visual distortions and dr/dp are 100x worse, i have severe sensitivity to movement, My dizziness and vertigo got worse and it now feels like im constantly rocking on a boat, my anxiety is sky high, suicidal idiation is back, i feel extremely brain damaged 

 

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  • 4 months later...
Wildflower0214

I was diagnosed with POTS when i was 16, which is a form if dysautonomia. I saw a dr about a year ago who told me that they thought I had severe adrenal fatigue instead. Who knows what the validity of that claim was.

 

Anyways, if I do indeed have POTS, that would mean that my nervous system was already screwed up, so this SSRI WD is not helping. I feel like my WD is pretty sh*ty compared with most. Wondering if this plays a role. Anyone else have any nervous system stuff or autoimmune disease?

2005-Zoloft bad reaction.....2006-Lexepro......2012-Upped Lexepro.......2013-Upped Lexepro......2/2014- Attempted Taper Lexepro...2/2014- Updosed Lexepro.......3/2014-Ativan.....5/2014- CT switch from Lexpro to Effexor.....

5/2014-7/2014-Tapered Ativan from 1mg to .25mg.....6/2014-Bad reaction to Effexor........7/2014- Rapid taper Effexor every other day......7/5/2014- Off Effexor.......7/2014-12/2014 - Ativan .25mg.......12/25/2014 -Taper Ativan by 4% due to paradoxical reaction .24mg...11/18/2015-Taper Ativan 1% CURRENTLY ON: .2376mg Ativan taken in 6 .0396mg doses.

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I have POTS that is linked to a rapid (6-week) benzo withdrawal. I was hospitalized for a week before benzodiazepines were reinstated. My symptoms rapidly improved and I could finally stand without pre-syncope and a HR of over 160. I never returned to my former baseline however, and a course of Florinef is probably in order for me.

 

It is possible that WD from SSRIs could worsen POTS, since SSRIs increase the standing vasoconstrictive reflex, but I am not a doctor nor an expert in dysautonomia.

 

I suggest you register at the Dinet forums, if you have not already. There are many knowledgeable people there and they can help you find an expert in your area. If you have dysautonomia, it needs treatment.

April / 2016: Cipralex 10 mg, Mirtazapine 30 mg, Lyrica 600 mg, Diazepam 20 mg, Bystolic 5 mg

2018: Lots of polypharmacy which is undocumented here. Started and stopped several drugs and changed doses of existing ones

August / 2018: Back on track! Cipralex 15 mg, Mirtazapine 7.5 mg, Diazepam 15 mg

September 2018: Cipralex 15 mg -> 12.5 mg

October 2018: Cipralex 12.5 mg -> 10 mg, Mirtazapine 7.5 mg -> 3.75 mg -> Stopped, Diazepam 15 mg

November 2019: Cipralex 5 mg, Diazepam 10 mg

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It would be interesting to hear what a dysautonomia expert (usually, a neurologist) knows about iatrogenic dysautonomia.

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.

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Wildflower0214

I have POTS that is linked to a rapid (6-week) benzo withdrawal. I was hospitalized for a week before benzodiazepines were reinstated. My symptoms rapidly improved and I could finally stand without pre-syncope and a HR of over 160. I never returned to my former baseline however, and a course of Florinef is probably in order for me.

 

It is possible that WD from SSRIs could worsen POTS, since SSRIs increase the standing vasoconstrictive reflex, but I am not a doctor nor an expert in dysautonomia.

 

I suggest you register at the Dinet forums, if you have not already. There are many knowledgeable people there and they can help you find an expert in your area. If you have dysautonomia, it needs treatment.

The problem is, because of this WD, I can't tokerate meds at all. So not much to treat. And for that matter, my POTS has not returned. I haven't had the rapid heart rate etc. I'm wondering if I ever had it at all.

2005-Zoloft bad reaction.....2006-Lexepro......2012-Upped Lexepro.......2013-Upped Lexepro......2/2014- Attempted Taper Lexepro...2/2014- Updosed Lexepro.......3/2014-Ativan.....5/2014- CT switch from Lexpro to Effexor.....

5/2014-7/2014-Tapered Ativan from 1mg to .25mg.....6/2014-Bad reaction to Effexor........7/2014- Rapid taper Effexor every other day......7/5/2014- Off Effexor.......7/2014-12/2014 - Ativan .25mg.......12/25/2014 -Taper Ativan by 4% due to paradoxical reaction .24mg...11/18/2015-Taper Ativan 1% CURRENTLY ON: .2376mg Ativan taken in 6 .0396mg doses.

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I have POTS that is linked to a rapid (6-week) benzo withdrawal. I was hospitalized for a week before benzodiazepines were reinstated. My symptoms rapidly improved and I could finally stand without pre-syncope and a HR of over 160. I never returned to my former baseline however, and a course of Florinef is probably in order for me.

 

It is possible that WD from SSRIs could worsen POTS, since SSRIs increase the standing vasoconstrictive reflex, but I am not a doctor nor an expert in dysautonomia.

 

I suggest you register at the Dinet forums, if you have not already. There are many knowledgeable people there and they can help you find an expert in your area. If you have dysautonomia, it needs treatment.

The problem is, because of this WD, I can't tokerate meds at all. So not much to treat. And for that matter, my POTS has not returned. I haven't had the rapid heart rate etc. I'm wondering if I ever had it at all.

 

 

What symptoms of dysautonomia are you experiencing? Do you have a blood pressure monitor. You can always go to a search engine and learn about the "poor man's tilt table test". Still I recommend you go to the website I suggested, which has a list of dysautonomia experts. Since you are in the US your search will be much easier.

 

 

@Altostrata: I'm not sure, but a resident at a local ER told me that benzodiazepine withdrawal can cause dysautonomia, without my prompting her. She just knew that I was a dysautonomniac and was on benzodiazepines.

April / 2016: Cipralex 10 mg, Mirtazapine 30 mg, Lyrica 600 mg, Diazepam 20 mg, Bystolic 5 mg

2018: Lots of polypharmacy which is undocumented here. Started and stopped several drugs and changed doses of existing ones

August / 2018: Back on track! Cipralex 15 mg, Mirtazapine 7.5 mg, Diazepam 15 mg

September 2018: Cipralex 15 mg -> 12.5 mg

October 2018: Cipralex 12.5 mg -> 10 mg, Mirtazapine 7.5 mg -> 3.75 mg -> Stopped, Diazepam 15 mg

November 2019: Cipralex 5 mg, Diazepam 10 mg

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Wildflower0214

 

 

 

I have POTS that is linked to a rapid (6-week) benzo withdrawal. I was hospitalized for a week before benzodiazepines were reinstated. My symptoms rapidly improved and I could finally stand without pre-syncope and a HR of over 160. I never returned to my former baseline however, and a course of Florinef is probably in order for me.

 

It is possible that WD from SSRIs could worsen POTS, since SSRIs increase the standing vasoconstrictive reflex, but I am not a doctor nor an expert in dysautonomia.

 

I suggest you register at the Dinet forums, if you have not already. There are many knowledgeable people there and they can help you find an expert in your area. If you have dysautonomia, it needs treatment.

The problem is, because of this WD, I can't tokerate meds at all. So not much to treat. And for that matter, my POTS has not returned. I haven't had the rapid heart rate etc. I'm wondering if I ever had it at all.

What symptoms of dysautonomia are you experiencing? Do you have a blood pressure monitor. You can always go to a search engine and learn about the "poor man's tilt table test". Still I recommend you go to the website I suggested, which has a list of dysautonomia experts. Since you are in the US your search will be much easier.

 

 

@Altostrata: I'm not sure, but a resident at a local ER told me that benzodiazepine withdrawal can cause dysautonomia, without my prompting her. She just knew that I was a dysautonomniac and was on benzodiazepines.

Well, I have all kinds but that is because I am going through a crappy SSRI WD. So, I can't use that as an indicator of what I would be experiencing without this circumstance. I had it starting when I was 13 and until 16 it was a problem. They put me a beta blockers for a few years and I hated them. Went off. I worked a full time job for several years on no med at all and was ok with it, until my mom got cancer and I ended up on an SSRI. And now I'm here.

2005-Zoloft bad reaction.....2006-Lexepro......2012-Upped Lexepro.......2013-Upped Lexepro......2/2014- Attempted Taper Lexepro...2/2014- Updosed Lexepro.......3/2014-Ativan.....5/2014- CT switch from Lexpro to Effexor.....

5/2014-7/2014-Tapered Ativan from 1mg to .25mg.....6/2014-Bad reaction to Effexor........7/2014- Rapid taper Effexor every other day......7/5/2014- Off Effexor.......7/2014-12/2014 - Ativan .25mg.......12/25/2014 -Taper Ativan by 4% due to paradoxical reaction .24mg...11/18/2015-Taper Ativan 1% CURRENTLY ON: .2376mg Ativan taken in 6 .0396mg doses.

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Wildflower0214

They actually treat dysautonomia with SSRIs. Lol

They tried to put me on Paxil when I was diagnosed. I have another friend who has POTS and they practically shoved them down her throat.

It's pretty standard practice. Frightening. That's a large part of how I ended up on Lexepro. So, unless someone finds a neurologist who is different from the five I've seen or the half dozen my friend has seen who has this, they are gonna push beta blockers or AD. Take your pick. :( that at least has been my experience. And I've been dealing with dysautonomia and neurologists for about 16 years with this. They just keep repeating the same mantra.

2005-Zoloft bad reaction.....2006-Lexepro......2012-Upped Lexepro.......2013-Upped Lexepro......2/2014- Attempted Taper Lexepro...2/2014- Updosed Lexepro.......3/2014-Ativan.....5/2014- CT switch from Lexpro to Effexor.....

5/2014-7/2014-Tapered Ativan from 1mg to .25mg.....6/2014-Bad reaction to Effexor........7/2014- Rapid taper Effexor every other day......7/5/2014- Off Effexor.......7/2014-12/2014 - Ativan .25mg.......12/25/2014 -Taper Ativan by 4% due to paradoxical reaction .24mg...11/18/2015-Taper Ativan 1% CURRENTLY ON: .2376mg Ativan taken in 6 .0396mg doses.

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  • 2 months later...
  • Administrator

merged similar topics

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.

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It makes me wonder how it is with people who were exposed to severe trauma in childhood. I know for sure that my autonomic nervous system was constantly in fight flight freeze response. So my system never had chance to develop more balanced response...

I have gone through many years of therapy, but my body still responds with alarm...then I need to get back to reality, check if my reaction is relevant to the trigger, etc. Something like with neuro-emotions, I need to check if I respond from here and now or from my past...

- 30.09.2020- reduced doxepin to 125mg, 16.10.2020- 100mg, 6.11.2020- 75mg

- May 2020, omeprazole 40mg switched to esomeprazole 20mg

- 2012 re-started Doxepin 75mg, evening. Increased to 150mg

- 2012, Atenolol 25mg, twice a day

- 2016, Low dose of HRT in evening, Sandrena and Utrogestan 

- Long terms of Nasal spray Otrivine

- 2012, PPI Omeprazole 40mg-evening

24.10.2014- Started ESCITALOPRAM-first 5mg and then 10mg; due to the adverse symptoms reduced on 5.01.2015- Escitalopram- 2.5mg 22.07.2016- re-started reduction by 1% at a time. Completed tappering on  19.03.2020 😇

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I have been told by my neurologist that I have gluten-sensitive small fiber neuropathy which started as pain and has progressed to dysautonomia. The pain from the neuropathy improved greatly with dietary changes, so it made no sense that the autonomic symptoms would have worsened. I think the dysautonomia is actually from trazodone, which I am trying to wean off of. 

 

I have a great, nutrition-oriented primary doctor. She recommended I eliminate every speck of gluten and stick to a strict, anti-inflammatory diet based on the principles in the book It Starts With Food. This is not an easy diet. I had to learn to cook and eat all over again. It took months. But I was very motivated because I was in such terrible pain. I still have occasional scary flares of pain (which hugely trigger my anxiety), but the pain is now mostly under control. I would never, no never go back to eating the way I used to. 

started Xanax in 2014 (summer?)

finished trazodone taper in March

started tapering Xanax in March

max dosage was 2mg

down to 1.5mg divided into 4 fairly even doses

trying dividing X into 6 doses

using liquid form of X

 

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I have been told by my neurologist that I have gluten-sensitive small fiber neuropathy which started as pain and has progressed to dysautonomia. The pain from the neuropathy improved greatly with dietary changes, so it made no sense that the autonomic symptoms would have worsened. I think the dysautonomia is actually from trazodone, which I am trying to wean off of. 

 

I have a great, nutrition-oriented primary doctor. She recommended I eliminate every speck of gluten and stick to a strict, anti-inflammatory diet based on the principles in the book It Starts With Food. This is not an easy diet. I had to learn to cook and eat all over again. It took months. But I was very motivated because I was in such terrible pain. I still have occasional scary flares of pain (which hugely trigger my anxiety), but the pain is now mostly under control. I would never, no never go back to eating the way I used to.

 

I am going to meet naturopath soon. I really need to get good consultation on food and supplements. She helped me in the past and she also works with people who have been put on various meds (not just antidepresants)...

 

For me disautonomia relates to my childhood trauma...so i think it is set for life, I have always responded to many stimuly in oversensitive manner...

- 30.09.2020- reduced doxepin to 125mg, 16.10.2020- 100mg, 6.11.2020- 75mg

- May 2020, omeprazole 40mg switched to esomeprazole 20mg

- 2012 re-started Doxepin 75mg, evening. Increased to 150mg

- 2012, Atenolol 25mg, twice a day

- 2016, Low dose of HRT in evening, Sandrena and Utrogestan 

- Long terms of Nasal spray Otrivine

- 2012, PPI Omeprazole 40mg-evening

24.10.2014- Started ESCITALOPRAM-first 5mg and then 10mg; due to the adverse symptoms reduced on 5.01.2015- Escitalopram- 2.5mg 22.07.2016- re-started reduction by 1% at a time. Completed tappering on  19.03.2020 😇

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  • 3 months later...

Hi guys... 

Im in a bad place at the moment and struggling to stabilise....

I have very high anxiety and aches and pains which cause more anxiety and now a new symptom have come in to play


I think its POTs... I can feel relaxed (even with anxiety going through my head) when im sitting and lying down but when i get up to move around i get breathless, sweating, heart racing, shaking and high anxiety for about 30-60secs after standing...

I also get heart racing after i sit up from lying down...
 

 

 

It then subsides and my heart rate goes down and i start to feel better....


Is this WD or should i seek help?


  

1999: amitriptyline
2002: fluoxetine
2003: venlafaxine
2007: Paxil 20mg
2012: Paxil 30mg
2014 june: Paxil stopped working and was put on citalopram 20mg
2014 august: docs put me on Paxil 20mg still feeling bad and had to stop antihistamines for hives
2015 January: doctors put me on sertriline 50mg
2015 February March: doctors wanted me to go back on Paxil 20mg
2015 April 1st: I wanted off and dropped to 10mg
9/5/15  Feeling worse for ware!  struggling but i WILL get through this

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  • Moderator Emeritus

I have the same thing.  In my case, I don't think I have POTS; I think the medication-induced damage in my body is mimicking POTS.     

**I'm not a doctor and don't give medical advice, merely personal experience
***Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-4 years off: Huge improvements, incl. improved dystonia

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Altostrata

Merged similar topics. Also see Dysautonomia (autonomic dysregulation)

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.

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Wildflower0214

I was diagnosed with POTS when I was 16. I think mine was brought on by trauma...

 

The only tips I can offer are

1) make sure you eat small meals throughout the day

2) make sure you get plenty of salt

3) make sure you drink plenty of water.

 

These things have made life easier for me.

 

From recent info I have read, POTS is not a disease in and of itself, it's a symptom...of overall autonomic nervous system chaos, which can be caused by trauma...and who knows what else. It seems the more I learn, the more confused I get about it.

2005-Zoloft bad reaction.....2006-Lexepro......2012-Upped Lexepro.......2013-Upped Lexepro......2/2014- Attempted Taper Lexepro...2/2014- Updosed Lexepro.......3/2014-Ativan.....5/2014- CT switch from Lexpro to Effexor.....

5/2014-7/2014-Tapered Ativan from 1mg to .25mg.....6/2014-Bad reaction to Effexor........7/2014- Rapid taper Effexor every other day......7/5/2014- Off Effexor.......7/2014-12/2014 - Ativan .25mg.......12/25/2014 -Taper Ativan by 4% due to paradoxical reaction .24mg...11/18/2015-Taper Ativan 1% CURRENTLY ON: .2376mg Ativan taken in 6 .0396mg doses.

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  • 5 weeks later...

Hello. I want to inquire about dysautonomia. It is pretty well reported I think that most of us suffer from issues related to the autonomic nervous system. Here are the primary symptoms as listed on wikipedia. Lately I experience pretty much all of these. 

.

 

I want to enquire specifically about THIRST and DISTENTION OF THE ABDOMEN and EXCESSIVE SWEATING. These I have had pretty much since terminating Citalopram. Even towards the end of being on them. Wearing a black t-shirt leaves me with basketball sized sweat pockets under my arms. My belly changes in size and sometimes I looks like I'm pregnant (I'm a 26 yo male). And I drink loads and loads of water. Always thirsty. I want to know if other people experience this exactly because I havn't heard much reporting on these, and I fear I am developing auto immune disorder which shares these.

Male

On Citalopram from 2008-2011 (age 19-23) for anxiety

Started on 20mg but was on 60mg at one point

Knew nothing about discontinuation and wasn't given much help from doctor

Tried stopping on my own after being stable on one pill a day (20mg)

Went horribly wrong and had to reinstate

Tried "tappering" on my own as doctor new nothing by taking half pills and skipping days

Managed to quit this way over 3 to 4 months

Had horrible reaction and began withdrawal hell

Found Paxil Progress after a month or so not understanding why symptoms wasn't going away

Mentally better but recently ran into huge fatigue problems after gradual onset. Now homebound

http://survivingantidepressants.org/index.php?/forum/3-introductions-and-updates/

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  • 6 months later...
  • Administrator

Here's an interesting article about supplements for POTS and other autonomic problems http://thelowhistaminechef.com/dr-diana-driscoll-interview-vagus-nerve-and-potsmast-cell-activation/

 

It's an interview with Dr. Diana Driscoll, an optometrist who suffers from POTS and other autonomic ailments. She traces this to vagus nerve dysfunction due to a lack of acetylcholine. (This is related to some kind of anti-cholinergic activity, drug-caused or otherwise.)

 

To treat this, Dr. Driscoll has developed a rather expensive supplement containing ingredients that may be stimulating:

  • Huperzine A
  • Alpha-GPC (Alpha GlyceroPhosphoCholine)
  • Acetyl L-Carnitine
  • Vitamin B-1 (Thiamine)

All of these are available individually. If you decide to try them, try one at a time in tiny, fractional doses and see how you do. Please let us know your results in this topic

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.

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  • Administrator

Here's an interesting article about supplements for POTS and other autonomic problems  http://thelowhistaminechef.com/dr-diana-driscoll-interview-vagus-nerve-and-potsmast-cell-activation/

 

It's an interview with Dr. Diana Driscoll, an optometrist who suffers from POTS and other autonomic ailments. She traces this to vagus nerve dysfunction due to a lack of acetylcholine. (This is related to some kind of anti-cholinergic activity, drug-caused or otherwise.)

 

To treat this, Dr. Driscoll has developed a rather expensive supplement containing ingredients that may be stimulating:

  • Huperzine A
  • Alpha-GPC (Alpha GlyceroPhosphoCholine)
  • Acetyl L-Carnitine
  • Vitamin B-1 (Thiamine)
All of these are available individually. If you decide to try them, try one at a time in tiny, fractional doses and see how you do. Please let us know your results in this topic.

 

I don't know if Dr. Driscoll's theory is correct. This is not a recommendation for her products.

 

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.

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  • 1 month later...
daddybuggaorange

That Parasym Plus has phosphyl Choline in it which effects acetylcholine levels...dangerous?  I relaly want to try phosphatidylserine again but scared to try anything that impacts any neurotransmitter; I guess PS can impact dopamine as well?  

 

I have POTS that started when I came off Klonopin.  They prescribed atenolol which is a beta blocker that gets my heart rate down to where it used to be, but it has some anticholergenic properties, and I definitely have anticholergenic syndrome.  I can't take bentyl or benadryl without a severe, adverse reaction.  I'd like to be off 

 

I was at Mayo clinic last February and failed all 3 of their autonomic nervous function tests while on atenolol.  My POTS seems to come and go.  Some times I can stop taking atenolol for awhile, then the orthostatic hypotension hits, heart rate goes way up, and I have to re-instate on the atenolol.   

Started klonopin 11/7/14 at 0.5 mg

on K consistently until week prior to Christmas

on/of Klonopin and 0.5 mg Xanax until 3rd week in February

tried c/t 3rd week in february, crashed hard, ER several times

1 mg klonopin last week in February until 2nd week in March

Quit Zoloft c/t 1st week of March 2015 & started Amitriptyline

Quit amitriptyline 2nd week in March & started Cymbalta

0.5 mg cut of Klonopin 2nd week in March

0.5 to 0 mg Klonopin taper March to June 2

off Klonopin since June 2

Stopped cymbalta august 24, started zoloft august 24

Seroquel taper from 75 to 0 over 12 days, last dose September 4.

Started Compazine Aug 12,  10 mg day

Stopped compazine aug 17, bad withdrawl

Started Remeron 3.75mg 10/12/15

Off Compazine 11/2/15

Off Zoloft 11/25/2015

Off Remeron 1/2/16

Brief encounter with Buspirone 1/13/16 - 1/18/16 2 tablets, bad reaction - severe depression

Tried Colonidine 1/14/16-1/20/16 - severe depression

Only Atenolol since 1/20/16

Reinstated Remeron 15mg 3/26/16

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  • 1 year later...

Just wondering if anyone has done a tilt table test to check for autonomic dysfunction. Apparently, they give you a drug to stimulate your heart which worries me a bit. Could doing this test possibly make antidepressant related heart symptoms worse since we are so sensitive to drugs?

 

I'm interested in doing this test because when I stand up after sitting down I get very light headed so suspect I have orthostatic hypotension (postural hypotension). 

Prozac 30 mg for many years.

Short two-week taper to 20 mg followed by 5 day washout period. (January 2017)

Lexapro 10 mg for 25 days. Stopped due to intolerable side-effects, notably palpitations and tinnitus. (February 2017)

Two day washout period before reinstating Prozac at 40 mg. (February 2017)

3 weeks later end up in ER due to severe palpitations and dizziness. (March 2017)

2 weeks of insomnia and intermittent akathesia. (March 2017)

Currently on Prozac 20 mg (just trying to stabilize, not ready to taper yet).

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AprilShowers

I had a hospital tilt table test a couple of years ago after some fainting spells. I was taken by a friend and had no after effects. They diagnosed vasovagal syncope and told me not to stand for too long and to drink plenty water to keep my body hydrated as it helps. 

2000: Use of venlafaxine for moderate depression for two years. Tapered off with no major problems. 

2010: Venlafaxine 5 years, doses between 75-150-300. Tolerated but only partially stabilised the severe depression & escallating side effects. 

Adverse reactions to citalopram (tried before venlafaxine), sertraline & mirtazapine (tried after venlafaxine became problematic) with suicidal ideation caused. 

2014: Adverse reaction to one prozac pill which I tried to begin taking in order to stabilise the withdrawal and actually made it horrendously worse. My body & brain went on fire two hours after taking the pill and severe WD began.

Spring 2014: CEASED ALL ANTIDEPRESSANTS. Did take occasional lorazepam (two weeks at first followed by the occasional half tablet at night sometimes.

2014: WD: living hell for five months, gradually improved a little by little for almost a year and a half but with frequent heart palpitations, weakness and anxiety and very poor sleep. Struggled to do things both physically & mentally but was improving slowly. 

2015: WD relapse with full symptoms. anxiety/panic triggered beyond initial anxiety resurgence by a couple of small half doses of Lorazepam that seem to have restarted all the WD symptoms I had in the beginning & ruined all the progress I had made. 

2017: Bad reaction to propranolol beta blockers. Nervous system kindled into violent shaking like withdrawal again. Alerting system on overdrive. 

 

Current Supplements: Omega 3 & Vitamin C, magnesium, potassium, pre/probiotics, brewer's yeast. 

 

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Hi AprilShowers, did they give you any drugs during the test, and if so was it through an IV?

Prozac 30 mg for many years.

Short two-week taper to 20 mg followed by 5 day washout period. (January 2017)

Lexapro 10 mg for 25 days. Stopped due to intolerable side-effects, notably palpitations and tinnitus. (February 2017)

Two day washout period before reinstating Prozac at 40 mg. (February 2017)

3 weeks later end up in ER due to severe palpitations and dizziness. (March 2017)

2 weeks of insomnia and intermittent akathesia. (March 2017)

Currently on Prozac 20 mg (just trying to stabilize, not ready to taper yet).

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  • Administrator

As AprilShowers noted, it's important to keep hydrated to keep your blood pressure up.

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.

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AprilShowers

Hi AprilShowers, did they give you any drugs during the test, and if so was it through an IV?

They gave me a drink. I had no after effects. I did have someone with me though so I wasn't driving myself home or anything. 

2000: Use of venlafaxine for moderate depression for two years. Tapered off with no major problems. 

2010: Venlafaxine 5 years, doses between 75-150-300. Tolerated but only partially stabilised the severe depression & escallating side effects. 

Adverse reactions to citalopram (tried before venlafaxine), sertraline & mirtazapine (tried after venlafaxine became problematic) with suicidal ideation caused. 

2014: Adverse reaction to one prozac pill which I tried to begin taking in order to stabilise the withdrawal and actually made it horrendously worse. My body & brain went on fire two hours after taking the pill and severe WD began.

Spring 2014: CEASED ALL ANTIDEPRESSANTS. Did take occasional lorazepam (two weeks at first followed by the occasional half tablet at night sometimes.

2014: WD: living hell for five months, gradually improved a little by little for almost a year and a half but with frequent heart palpitations, weakness and anxiety and very poor sleep. Struggled to do things both physically & mentally but was improving slowly. 

2015: WD relapse with full symptoms. anxiety/panic triggered beyond initial anxiety resurgence by a couple of small half doses of Lorazepam that seem to have restarted all the WD symptoms I had in the beginning & ruined all the progress I had made. 

2017: Bad reaction to propranolol beta blockers. Nervous system kindled into violent shaking like withdrawal again. Alerting system on overdrive. 

 

Current Supplements: Omega 3 & Vitamin C, magnesium, potassium, pre/probiotics, brewer's yeast. 

 

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  • 2 months later...

Dear members. 

I am new to this forum.

My body is showing fight flight response every time I lower the dose.

 

Cns imbalance

Dysautonomia

Hpa axis dysfunction

 

What ever it is called.

I am 100% sure if I taper off fully I will enter into delirium tremans.

 

Please read my posts. Since the day I took meds my life has been difficult very difficult.  Last month was absolute hell.

 

What can I do?

How can the receptors nerves upregulate?

 

I haven't had homeostasis since day one.

 

 

  • July 2016: prescribed 25mg Zoloft, diagnosed with MDD. Developed severe reaction and taken to ER.. CSeroquel when not able to sleep, very small dose (12.5mg) but causing headache and dry mouth the next two three days, 

  • July - December 2016: 25+ 25mg, constantly in pain, had to go to ER once, 

  • January 2017: Still believing the doctors and thinking the meds are helpful, increased the dose to 75mg, had to go to ER three times, after drinking water non-stop.  

  • Realised that these meds are actually toxins and are very harmful. Looking for experts in the field, going to doctors

  • February - May 2017: 50mg, severe withdrawal symptoms, severe burning pain in chest, lower back, Seroquel only 12.5mg but not helping. Slowly developing OCD, as the headaches and heat flash can hit any time.

  • found SA site and started reading day and night

  • May-September 2017: 25mg, drinking lots of water, having great pain, not able to function, ER visits because of arythmia, hot flashes

  • October 2017: started tapering and feeling better, but the symptoms are there. 

  • Supplements: None so far, 

 

Treatment Outline.docx

July 23-30th, 2017.xlsx

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  • 9 months later...
tryingtosurvive

I read articles of persisting dizzyness after prozac- is this something that can come up 4 years after CT ?

fluoxetine since 13years followed doctors advice tapered 40 mg to 0mg in 4 months july 2015 august crasched in panic attacks etc end of september akatisia , nausea, crying alot no one told me it could be something called withdrawal I read it and also about going back to last dose No one knew if it was worth it. tried reinstate autumn 2014 5 mg prozac then 10mg since 29/11-2014 feel only worse sucidal for real, tried antihistamine 10 mg or oxascand (benso) 5 mg or valerian for anxiousness but sick feeling taking this. 6mg prozac to taper slowly down since 15/2-2014 (30ml out of 100ml water with 20 mg pill) tapered 10-20% per month until June 2015 super anxious depressed tired. Got Buspar may 2015 5mg 10mg 15mg headache etc
June 2015: 10mg buspar plus around 3 mg prozac quit this cold turkey in July 2015. One week later crying spells and suicidal. Tried 5htp.magnesium omega 3 until September. October 2015 tested vit D was 17 . Since October 2015 ONLY Vit D and magnesium . nov 2016 can laungh again! but still too anxious ,depressed or lethargic in waves can't focuS, Crying spells , scared, social fobia, bitterness. .. . Did not reinstate prozac again . Trying to survive ....

july 2016-troathpain /reflux starts...

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These drugs sucks.. I am 26 months off paxil.. and other drugs and still have dizzy slow head.. Fatigued.. 

 

I know your question asked for post 48 months.. But who knows about symptoms and recovery time.?

08/13 - 01/14
Olanzapine, petril MD (Clonazepam ), Dicorate ER (divalproex). Soza 10 (Zolpidem)

02/14 - 05/14
Flunil ​20mg , Divaa OD 250 mg(divalproex), Amisulpride 50mg (1-0-2), zolfresh 5 mg , Quetiapine
05/14 - 08/14 Venlafaxine 75 xr ( 1-0-1), zapiz 0.25
10/14 Zaptra 12.5mg , Oxetol xr 150mg (0-0-1)
11/14 - 08/15
Paris CR 25 (paroxetine) , Oxetol xr 600 mg (0-0-1), nitrest 5mg , Quetiapine for a month.
09/15-11 Venlafaxine XR 75 ( 1-0-1), Mirtazipine 15, Respiredal 0.5, Lamitor 25, zillion 10.
12/15-02/16 Off Meds (C.T)

03/16-Mid April Sertraline, Aripropazole, Quetiapine, Etizolam.

After that : CT and on OTC supplements (Roadback), now on Ayurveda
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  • Administrator
Altostrata

Please see posts above.

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.

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  • 10 months later...

I was diagnosed with POTS a few months back after stopping Benzos, Prozac and birth control. I was completely unable to stand up and was in a wheelchair in the ER constantly for weeks. The doctors gave me so much fluid thinking I was continually getting dehydrated. The internal medicine doctors told me the extreme drop in blood pressure and rapid heart rate when I stood up was all anxiety and that made my blood boil. I was miserable. It's still bad at times, but i've got a handle on it with frequent light exercise, electrolyte drinks, compression socks, good sleep and I make sure I don't take any meds or supplements that can decrease my blood pressure. 

2009-2018: 15mg Celexa

 

June 2018-January 2019: .5mg-1mg Ativan

 

2010-March 2019: Marvelon 21 (Birth Control) 

 

September 2018-Present: Prozac reinstated 1mg (.25ml) April 21st 2019 , updosed to .32ml June 19, 2019 now holding to stabilize.

 

2015-Present: Myers Cocktails 1-2x month 

 

June 2019-Present: B 50 Complex, Magnesium as needed.

 

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  • 1 month later...
Vonnegutjunky

So I am actively looks for a doctor who treats dysautonomia. I have had this my entire life, I never even knew there was such a thing. I was diagnosed with Cfs, but I think the dysautonomia is the culprit of the cfs. 

 

If anyone knows what kind of doctor I need to go to? That would be really helpful. 

 

*Currently at 3.3mg off my 10mg pill of Paxil (they actually weigh 12.5mg) so I’m around 7.4 mg 

*No other supplements or vitamins 

*Taper schedule in the pdf 

Blank.pdf

 

https://docs.google.com/document/d/1-5vShtJtwAOGA30OxIP87steLmMdFzD29F0fzAPD564

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  • ChessieCat changed the title to Postural tachycardia syndrome (PoTS)?
  • 4 weeks later...

Is withdrawal induced POTS going to get better in time?This is my main concerning symptom right now

Lorazepam -2 weeks-1 week 3 mg.4 days 2mg, 3 days 1mg. 13-27 November 2018

Lexapro -2 months-6 weeks of 10mg, 2 weeks of 5mg 27 November 2018-27 January 2019

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The doctor said an explanation for my evening crisis.

I do vasovagal syncope when i defaecate.

 

i have searched on google and find defaecation syncope.

 

i knew i did vasovagal syncope if it was too hot temperature, and if i stand up long.

But i didn't knew when i defecate too (poo).

The doctor just said to me to lengthen and lift legs when i do a syncope.

The last time it arrive, it was with my family when evening dinner... you eat and your bowel move and make syncope...

 

i start this post just to know if others have that, and if it had goes away with time.

(i have stop medication 2 years ago)

 

 

 

(i am french)

1998 prazépam, citalopram /1999 paroxetine prazepam /2000 paroxétine /2001venafaxine, alprazolam, clomipramine * 2002 (dont remember)/2003 clomipramine, alprazolam /2004 clomipramine /2005 alprazolam /2006(dont remember) * 2007citalopram, alprazolam, prazépam, venlafaxine /2008(dont remember) /2009 venlafaxine /2010 venlafaxine *All precedent withdrawal were very fast. I tried many times to stop but didn't know what happened. *2011 mirtazapine (22,5 mg) , norset , risperdal (cold turkey for risperdal and norset, analysis by doctor say that my body does not support and i was in danger) /2012 mirtazapine / 2013 mirtazapine  *october 2014 mirtazapine (15mg) - putting down slowly.   *when i was good for one month i  down 1ml. (1ml of 100ml of water in which there was 1 pill of 15mg of mirtazapine. At the end i remove 1ml of 50ml of water but with 0,5 pill it does the same concentration.) (i down more like "how i feel, because at the beginning i had a calendar tapping 10% every 15 days and i was really bad, so i decided to see one month and after if i was trust in my body, i remove 10% of the dose at the beginning; and at the end i remove 1ml (when the 10% was lower than 1ml). It was more how i feel. (it is just the last 1 ml that i remove rapidly because i think i was attached mentally and i need to break. and 1ml of 50ml of 15/2mg is just 1ml correspond to 0.15mg. ).  -juillet 2017 stop all. 

nov 2017 tetany and gastritis. I found "euphytose", "spasmine", "phyto-stress" from Govital(the more efficient if crisis because more concentrated)  efficient. If very bad i take valerian extract 1000mg (stop crisis). I have iron deficiency and osteoporosis (36 years old) Bone like a 80 years old.  2020: Often crisis at sunset. (spasmophilia, tetany, tremor, contractions, internal vibration ), insomnia, fundal gastritis and erythematous antral gastritis. hypotension low blood pressure.

 

 

 

 

 

 

 

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  • Administrator

@emilie this topic discusses vasovagal syncope.

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.

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  • ChessieCat changed the title to Dysautonomia (autonomic dysregulation) - POTS, syncope, etc.

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