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AmitV: Escitalopram Withdrawal - Anxiety, Chronic Dizziness & High Heart Rates


AmitV

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On 2/1/2024 at 8:21 PM, AmitV said:

I’m not sure I understand your point of view. I’m presuming your assumption is neurological “damage”. It’s not damage, it’s maladaptive neuroplasticity. Not a stroke or MS. Physio helps with finding old pathways which still exist, so does distraction. This is functional neurology 101. 

 

My point of view is that someone who cannot stand and has severe cognitive dysfunction:

  1. Cannot be "busy shopping"
  2. Experience these things spontaneously go away during said busy shopping trip if they are a result of drug withdrawal issues

Hence I said that these symptoms might be as a result of trauma FOR YOU. You claiming that drug withdrawal = trauma is totally unsubstantiated. There are people who have taken psychiatric drugs prescribed for non-psychiatric conditions that have had withdrawal issues.

  

 

On 2/1/2024 at 8:21 PM, AmitV said:

I also don't think you're understanding how "trauma" works.

 

I don't think you're understanding that some people have symptoms caused by these drugs that is in no way related to "trauma".

 

  

 

On 2/1/2024 at 8:21 PM, AmitV said:

Practically everyone in withdrawals can say, its no less than being a "traumatic" experience.

 

  So is getting a cancer diagnosis but that wouldn't then mean that cancer is just trauma instead of a medical issue.

 

  • 15mg Remeron/Mirtazapine November starting 2022 (severe physical side effects)
  • Attempted to taper off January 2023, ended up having a major breakdown and going up to 30mg, took weeks to stabilise
  • Therapy and self-care helped a lot mentally while stable on the drug (but with bad physical side effects)
  • Tapered off over 4-5 weeks, felt physically better all through taper & sexual side effects & palpitations went away
  • Last dose 20-24th April 2023
  • Severely physically unwell from 2nd May 2023. Had many bad symptoms eg. Palpitations, adrenaline rushes at night etc in the weeks following and couldn't eat. 
  • Many symptoms eventually resolved, but left with severe and debilitating fatigue, poor sleep and sexual side effects.

 

Summary: 5 months using Mirtazapine, including 1 month taper ending late April 2023. Severe withdrawal since.

 

 

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1 hour ago, LukeUK said:

 

 

My point of view is that someone who cannot stand and has severe cognitive dysfunction:

  1. Cannot be "busy shopping"
  2. Experience these things spontaneously go away during said busy shopping trip if they are a result of drug withdrawal issues

Hence I said that these symptoms might be as a result of trauma FOR YOU. You claiming that drug withdrawal = trauma is totally unsubstantiated. There are people who have taken psychiatric drugs prescribed for non-psychiatric conditions that have had withdrawal issues.

  

 

 

I don't think you're understanding that some people have symptoms caused by these drugs that is in no way related to "trauma".

 

  

 

 

  So is getting a cancer diagnosis but that wouldn't then mean that cancer is just trauma instead of a medical issue.

 

 

First of all, I never said, my understanding of drug withdrawals is evidence-based. I have made that very clear from my initial post. So stop right there on that. Faust didn't share his recovery progress until he was recovered, because non-conforming thinkers always get accused of running a shill. Instead, he figured it out and recovered. He shared his story after complete recovery, and instead of getting pounded on by others, took the badge of popular post and left, never to return. Tell me, would the mods have done the same, had he shared the evidence of it and supplemented protocol halfway through his recovery? The mods would've shunned him for sharing supplement strategies anything other than magnesium and omega 3. Just like everyone else, he'd just be blamed for misleading. So let's leave it at that and forget that there is anything evidence-based about this. I'm not in the business of running clinical trials. I'm in the business of self-healing from this! and I don't have another decade to hang around. So, take it or leave it. Since you don't have an understanding of FND's, which is very hard for most people with FNDs to ever accept, I'll refrain from responding to any more of your comments after this. FND is a Mind-Body Disorder, the psychological pain drives neurological symptoms (symptoms are absolutely real and not faked), and both feed off each other. It results from pain or trauma and can co-exist with another disease. That does not mean it cannot be reversed. Distraction is an important tool used towards recovery.

 

Secondly, I don't think you're quite understanding, what "trauma" means. It could be emotional injury, physical injury, disease-related injury, drug-related injury, or a painful experience. You can read more in the link below in "Why does FND Happen?", 

 

Functional neurological disorder (FND) | NHS inform | NHS inform

  • the brain trying to get rid of a painful sensation
  • a migraine or other neurological symptom
  • the brain shutting down a part or all of the body in response to a situation it thinks is threatening

The painful sensation and/or threatening sensation, otherwise described as " trauma" in complex or protracted withdrawals appears to be "chronic akathisia". Since a drug-injury is not possible, when you have come "off" the drug! For reference akathisia "sometimes" responds quite well to low dosages of certain medications and other times it makes it worse. There is nothing different with this than what is the usual recommendation from mods regarding re-instatement, and how some people got worse from re-instatements. In most people's stories, there is a definitive aspect of agitation, restlessness, and anxiety manifestation before the onset of neurological symptoms. There are hundreds of other neurological diseases and conditions, so why are more than half the people here feeling "hopeless/suicidal"? What is so drastic about symptoms, that people feel this way? It's not because of symptoms. It's because of akathisia. While this is driven by the absence of the drug and an imbalance in dopamine levels and excess glutamate, it's not brain damage. 100% recovery is possible, by removing the "trauma", i.e akathisia.

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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How is your PPPD now?

May 2019 started lexapro 2.5 mg; 2020 went to every other day; 2021 beginning of Mar, tried to stop but had insomnia; Mar 30, 2021 reinstated 1.25 ev other day, WD symptoms, not enough

April 19, 2021 started liquid, .85 mg/day; May 1, 2021 .8 mg, May 6 .75 mg; June 6 .7 mg, June 20 .65mg, June 30  .6mg, Jul 24 .55 mg, Oct 17 .5 mg, Dec 5- .45 mg; Jan 26, 2022- 4mg,  April 18- .375 ; April 24- .35; April 29- .3; Jun 12- .25 mg; Jun 28- .2 lex; Sept- .15 mg, Nov .1- long hold, never got better

June ‘23- PPPD started 🙁, Jun- .09, Jul- .08, Oct- .07, Dec- .06, Jan ‘24- .05!

Taking Magnesium, whole foods iron, & natural supplements as needed for sleep

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On 2/6/2024 at 7:25 PM, AmitV said:

Since you don't have an understanding of FND's

  

On 2/6/2024 at 7:25 PM, AmitV said:

Secondly, I don't think you're quite understanding, what "trauma" means. It could be emotional injury, physical injury, disease-related injury, drug-related injury, or a painful experience. 

 

 Repeatedly telling people they just don't understand what they're talking about is not discussing things in good faith. 

 

On 2/6/2024 at 7:25 PM, AmitV said:

The painful sensation and/or threatening sensation, otherwise described as " trauma" in complex or protracted withdrawals appears to be "chronic akathisia". Since a drug-injury is not possible, when you have come "off" the drug!

 

And what about the gigantic range of other symptoms that people can and do have? I understand what the word trauma means perfectly well. Akathisia is just one symptom that psychiatric drug adverse reactions, and withdrawal syndrome can cause.

 

  

 

On 2/6/2024 at 7:25 PM, AmitV said:

so why are more than half the people here feeling "hopeless/suicidal"? What is so drastic about symptoms, that people feel this way? It's not because of symptoms. It's because of akathisia.

 

This is unbelievably insensitive. I have no akathisia yet funnily enough losing everything I worked for in my adult life, losing the ability to have relationships and friendships, having terrible cognition, being exhausted and sick every hour of every day and going from extremely healthy to having a quality of life worse than death overnight makes me feel a little down sometimes, to say the least. I had no psychological pain until I had been severely physically unwell for months, I did not appear to be getting better and I started losing everything.

 

 

 

Note that I haven't criticised your recovery protocols whatsoever. Only the things you are claiming (making up) about everybody else's condition.

 

  • 15mg Remeron/Mirtazapine November starting 2022 (severe physical side effects)
  • Attempted to taper off January 2023, ended up having a major breakdown and going up to 30mg, took weeks to stabilise
  • Therapy and self-care helped a lot mentally while stable on the drug (but with bad physical side effects)
  • Tapered off over 4-5 weeks, felt physically better all through taper & sexual side effects & palpitations went away
  • Last dose 20-24th April 2023
  • Severely physically unwell from 2nd May 2023. Had many bad symptoms eg. Palpitations, adrenaline rushes at night etc in the weeks following and couldn't eat. 
  • Many symptoms eventually resolved, but left with severe and debilitating fatigue, poor sleep and sexual side effects.

 

Summary: 5 months using Mirtazapine, including 1 month taper ending late April 2023. Severe withdrawal since.

 

 

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On 2/9/2024 at 4:21 AM, LukeUK said:

  

 

 Repeatedly telling people they just don't understand what they're talking about is not discussing things in good faith. 

 

 

And what about the gigantic range of other symptoms that people can and do have? I understand what the word trauma means perfectly well. Akathisia is just one symptom that psychiatric drug adverse reactions, and withdrawal syndrome can cause.

 

  

 

 

This is unbelievably insensitive. I have no akathisia yet funnily enough losing everything I worked for in my adult life, losing the ability to have relationships and friendships, having terrible cognition, being exhausted and sick every hour of every day and going from extremely healthy to having a quality of life worse than death overnight makes me feel a little down sometimes, to say the least. I had no psychological pain until I had been severely physically unwell for months, I did not appear to be getting better and I started losing everything.

 

 

 

Note that I haven't criticised your recovery protocols whatsoever. Only the things you are claiming (making up) about everybody else's condition.

 


i have nothing to add, other than my non evidence based opinion. You should consider seeing a neurologist and consider a functional MRI. It’s the only way to know what you have. My opinion is immaterial. 

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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On 2/6/2024 at 9:16 AM, AmitV said:

vitamin b12 - methylated made me worse. Non methylated cyanocobalamin helped. There’s something about overmethylation that occurs with SSRI use, that elevates blood copper serum levels which ultimately downregulates GAD liver enzyme even more (our bodies natural glutamate/gaba manager). Methylated B vitamins or methyl folate make things worse.

Hello, @AmitV

I took those for 2-3 weeks during and after an adverse reaction to Effexor. I was taking also

magnesium, multivitamin and a high dose vitamin D with them. I got an awful mental symptom and it was a feeling that i just cannot describe and i’m still extremely traumatised by it. I thought it was just the withdrawal from Effexor, but Once i made the connection that it was the supplements, i stopped them and returned to baseline in 2 days, but now i keep getting that sensation as a reaction to some foods, spices, chemicals, nicotine, perfumes etc.. 

The feeling is like i’m on a bad acid trip where everything around me looks horrible with an unbelievably low crushing dysphoric mood and intense suicidal urges. It feels that my brain is being extremely deprived of serotonin or dopamine (that’s the best i could describe it).

It just doesn’t feel possible to feel this way I haven’t read anybody who’s experienced that.. 

Did i screw up my brain permanently? Can these supplements mess you up badly when you take them after having an adverse reaction? 

 I’m still not sure though whether the supplements or Effexor have caused it or i reacted that way to the supplements since i’m going through an adverse reaction / protracted withdrawal to many antidepressants after many rapid tapers and CTS... 

I’m so terrified that i will live with this forever my life have have taken a 360-degree turn to the absolute worst in the last 8 months…

08/2016-05/2018 Effexor 250mg

05/2018-04/2019 Paxil 40mg
05/2019-08/2020 Effexor 150mg

05/2019 (risperidone for 4 days)
12/2020-12/2021 Effexor 150mg
12/2021-04/2022 Prozac 40mg (cross tappered for 10 days)
02/2022 Abilify 10mg (2 weeks)
04/2022-05/2022 Anafranil 50mg (one month)
05/2022-06/2022 Strattera 40mg (one month), 07/2022 Bupropion 150mg (2 weeks)
07/2022-11/2022 Duloxetine 90mg (with Concerta 54mg and Ritalin 10-20mg)

10/2022 - 11/2022 Quetiapine 25 mg for sleep
02/2023 prozac 20 mg  (3weeks),05/2023 Anfranil 25mg (2 days), 06/2023 Effexor (1 week 37,5mg, 4 days 75mg)

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51 minutes ago, Moe96 said:

Hello, @AmitV

I took those for 2-3 weeks during and after an adverse reaction to Effexor. I was taking also

magnesium, multivitamin and a high dose vitamin D with them. I got an awful mental symptom and it was a feeling that i just cannot describe and i’m still extremely traumatised by it. I thought it was just the withdrawal from Effexor, but Once i made the connection that it was the supplements, i stopped them and returned to baseline in 2 days, but now i keep getting that sensation as a reaction to some foods, spices, chemicals, nicotine, perfumes etc.. 

The feeling is like i’m on a bad acid trip where everything around me looks horrible with an unbelievably low crushing dysphoric mood and intense suicidal urges. It feels that my brain is being extremely deprived of serotonin or dopamine (that’s the best i could describe it).

It just doesn’t feel possible to feel this way I haven’t read anybody who’s experienced that.. 

Did i screw up my brain permanently? Can these supplements mess you up badly when you take them after having an adverse reaction? 

 I’m still not sure though whether the supplements or Effexor have caused it or i reacted that way to the supplements since i’m going through an adverse reaction / protracted withdrawal to many antidepressants after many rapid tapers and CTS... 

I’m so terrified that i will live with this forever my life have have taken a 360-degree turn to the absolute worst in the last 8 months…


ouch!!! Definitely akathisia. Every bit of it. The general recommendation is to ride it out for atleast 3-6 months, since that’s usually the time frame it drops. If it hasn’t then, vitamin D, magnesium and multivitamin made me quite worse too. It’s not forever, but it can be very limiting and challenging. You can consider the 2nd and 3rd link below. There are other safe non pharma alternatives on akathisia reddit page as well. You will read more there, that what one person responds to small dosage of a particular supplement extremely well, another person gets the opposite effect. So it’s important to understand that. While I had a bad effect from magnesium, I had a positive response to mineral manganese.
 

the suicidal urges, and everything running at 3000mph was maddening for me! Luckily, manganese. Niacinamide and P5P put an end to that. I still have other sensory neurological symptoms, but they’re getting better.

 

https://akathisiaalliance.org/wp-content/uploads/2024/01/Guide-for-Clinicians-012224-editable.pdf

 

https://rxisk.org/pyridoxal-5-phosphate-and-akathisia/

 

https://isom.ca/wp-content/uploads/2020/01/JOM_1976_05_1_02_Manganese_and_Niacin_in_the_Treatment_of_Drug-.pdf

 

i don’t encourage any supplement or drug that directly effects dopamine. It’s a dangerous game. High dopamine and dopamine blockade can exist at the same time. Niacin, Niacinamide is usually a safe bet in the way it removes the dopamine blockade. P5P increase gaba, and balances dopamine production. Yet, some people respond poorly to P5P. I haven’t heard any negative stories of niacin and niacinamide, but that doesn’t mean they don’t exist. 

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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Wanted to share this with everyone. There’s 2 ways to look at this. Drug dykinesias as well as PTSD.

 

https://ctz.dk/vitaminb3/ptsd/

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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1 hour ago, AmitV said:

Chciałem się tym podzielić ze wszystkimi. Można na to spojrzeć na 2 sposoby. Dykinezje narkotykowe i PTSD.

 

https://ctz.dk/vitaminb3/ptsd/

Hi. What do you think the "gastroparesis" or IBS caused by escitalpram withdrawal is? I have read about niacin

 

2022 escitalopram from July 25 2.5 mg, 5 mg, 10 mg August-December- 7.5 mg, 5 mg, (1 month) 2.5 mg - C/T 
WD
2023 Short reinstatement from WD date: 

escitalopram May 25-June 12 5 mg, 2.5 mg plus interrupted

Reinstatement 24 07.23 0.5mg escitalopram, 18.08.23 0.22 escitalopram, 07.09. 0.28
Now 0.30 mg escitalopram 

Last year 6 months on escitalopram, I was very agitated, hypomaniacal and with little need for sleep. 
Since July 2023 reinstated and reduced from 0.50 mg to 0.30 mg Lexapro - difficulty sleeping and lack of sleep, eye pain and IBS. Anhedonia. 

November 2023 - 0mg

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3 hours ago, modelarz71 said:

Hi. What do you think the "gastroparesis" or IBS caused by escitalpram withdrawal is? I have read about niacin

 

IBS, as far as my knowledge goes is a hyper-active nervous system. Ideally, it should resolve with time if that's your only symptom, but if you have mental symptoms, It doesn't hurt to try niacin. Either Niacin or P5P made my digestion much better, but I didn't have symptoms anywhere close to IBS. My understanding is all these symptoms are a result of nervous system hyperactivity or nervous system stress from drug withdrawals. After all rest and digest is a function of the healthy nervous system.

 

I found a reference to GERD somewhere in this link.

 

https://www.holistichelp.net/blog/how-to-increase-gaba-and-balance-glutamate/

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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On 2/1/2024 at 12:14 PM, AmitV said:

mod note-  split off responses from Faust's Success story, starting here.

 

Hello @MaggieSmalls & @LostInCanada

 

I'm responding to your PM's here. So others can see it too.

 

Feel free to PM me with any more questions.

 

I take a very high dosage of P5P (Active B6) - 600mg split 3 times/day, which made a difference within 48-72hrs. Normal B6 didn't do anything for me. Supplementing with normal B6 interferes with active B6 in the body. In some people low dosages work, in others high. I'm the one that needs high dosages. It's not cheap, unfortunately.

 

Pyridoxal-5-Phosphate and Akathisia - RxISK

 

Same for niacinamide - I take 3000mg total split 3 times a day, which made a difference in less than a week. The improvements are cumulative day after day. Previous gains haven't been lost.

 

I also take 125mg of nicotinic acid (flushing niacin) - Twice a day. I believe this helps flushing of liver somehow and re-establish the balance of liver enzymes which these psychiatric drugs are potent inhibitors of. The GAD enzyme is the primary enzyme that manages the regulation of chronic stress, trauma, mental health, rest and digestion, etc. 

 

Microsoft Word - 1976-v05n01-p004.doc (isom.ca)

 

I attribute my tremors, tics, and twitches going away in a few days to the above. DP/DR dropped in 3 weeks.

 

As for PPPD, I'm following this story.

 

PPPD – Persistent Postural Perceptual Dizziness - RxISK

 

Post Withdrawal syndromes are very poorly understood. So are drug adverse reactions. While I have no evidence to prove my theory, and it has been pointed to me that I'm selling pseudoscience, it appears that it is a mix of Akathisia and Functional Neurological Symptoms from Akathisia. The entire context of functional neurological disorders is they appear from "trauma". Nothing can be identified on blood, vision, vestibular, Holter tests, and MRIs, except a functional MRI. They are not a chemical imbalance. The "trauma" in protracted withdrawal syndrome is Akathisia. Some people report going into withdrawals 6-9-12 months after stopping their meds. Which appears to be consistent with Tardive Akathisia. Drug Adverse reaction folks who only took meds for less than a month suffer for years, this appears to Akathisia - "trauma". Neurological symptoms - FND. The combination of this appears to be classified as a "Kindled Brain". This is why even folks with "kindled brains" sometimes make abrupt and full recoveries because there is no brain damage. For reference, some people find relief in withdrawals from cyproheptadine or Benadryl. Both are pharamceutical interventions for akathisia.

 

People who recover from Akathisia and FND, their memories of the event are very foggy and they just want to get on with their lives. So I don't blame Faust for not coming back to respond. Understanding the FND mechanism is important wrt to this. FND is maladaptive neuroplasticity meant to protect a person from experiencing further trauma (the real you is still in there), it's a protection mechanism that generates neurological symptoms and DP/DR. This is a trauma response of the brain, that puts the person in limp mode with symptoms, DP/DR, crippled in bed, anxiety, depression, etc. etc. The treatment for FND is trauma therapy, resolve the trauma, and the symptoms go away. Brain flips back to its original "good neuroplastic" tracks. Instead of going forward in time, the movie runs backward, which is why memories of being in withdrawals and akathisia become foggy and feel like a blip in your life, once it all switches back. They can't even remember what some of their symptoms felt like, once they've recovered. The "check engine" light goes away and the brain begins flipping back to its normal functional mechanism. FND Neurologists call this a "software reboot".

 

I attend therapy with several other FND patients twice a week, I find it strange that some patients talk about body zaps, brain zaps, brain fog, dizziness, DP/DR and had nothing to do with drugs or withdrawals. Their trauma is "PTSD" or "Childhood Trauma". Once again, we have to resolve the trauma, whatever it is. In our case, it may be "drug akathisia", usually triggered by a dosage change or tardive usually triggered by a stressful event while being on psychiatric medication or having just come off it.

 

Anyways, the intent is to resolve the "trauma" which I am with supplements just like Faust did and I have been making functional symptom improvements every 3-4 days.

 

This may help. Which may commonly misinterpreted as withdrawal symptoms.

 

Guide-for-Clinicians-012224-editable.pdf (akathisiaalliance.org)

 

While the entire chemical imbalance theory is a complete hoax. Serotonin, gaba, glutamate is just a theory. The dopamine mechanism is not. Very well understood in drug reactions of akathisia, dyskinesia, and drug-induced parkinsonism. Every psychiatric medication affects dopamine including benzos. But the answer is not as simple as supplementing with dopamine, that just makes matters worse by downregulating existing dopamine even more. P5P, B3, E, and C help in removing dopamine blockades imposed by drugs and re-establishing the brain's "original" dopamine mechanism. This why most people never really feel the same for years after being exposed to psychiatric drugs. For reference, Omega 3 and magnesium are dopamine agonists, but they only calm a bit, and don't remove dopamine blockades. Caffeine is a dopamine agonist, but also an adenosine antagonist, which is why it's horrible in withdrawals and akathisia.

 

I was reading someone's story on SA about how he ended up in a wheelchair from drug reinstatement and is now paralyzed and tests and MRI's showed nothing. Paralysis is very common in Functional Neurological disorders. I strongly believe this person can fully recover within a few days. Just like the 16-year-old girl in Bulgaria who started walking again 11 days, and stopped being suicidal in 6 days, after her mother gave her P5P and niacin after she saw my story on Reddit. Then the moderator of the group banned me for sharing pseudoscience. At least I gave one teenager back her life, so I'm happy with that. She had drug-induced akathisia and functional neurological disorder. For 3 years, the neurologists couldn't do "**** all". A psychiatric medication had paralyzed her and doctors called it injury from serotonin syndrome and FND. They saw the functional paralysis, but not the "suicidal ideations" and "racing thoughts".

 

Some other supplements I take. Vitamin E - 800mg/day. Vitamin C - 4 grams. Vitamin C is a co-factor for Vitamin E. and is a highly recommended supplement in drug dyskinesia, parkinsonism, and akathisia, which is why I take them.

 

Below is a list of functional symptoms.

 

Functional neurological disorder (FND) | NHS inform | NHS inform

 

Tinnitus in withdrawals appears to be the same mechanism. Which is why usually it goes away.

 

"Tinnitus perception and dopaminergic pathway share the same cerebral structures, which control attention, stress, emotions, learning, memory and motivated behavior. Distress of tinnitus emanates from these same cerebral functions."

 

Ginkgo is a dopamine agonist. It works sometimes for tinnitus, but not always. Mucuna (Natural levodopa) worked much better for my tinnitus.

 

P5P is a cofactor for GABA production. It converts glutamate to gaba and eventually increases dopamine production.

 

Low Gaba and low dopamine (they go hand in hand) also release excess acetylcholine that causes immense sympathetic stress. Which is why some folks on this forum suffer from POTS. Likely another form of drug "akathisia or dyskinesia".

 

Overall my biggest improvements came from P5P, B12 (protects against glutamate), Niacinamide and Niacin. Other stuff is just adjunct.

 

Hope this helps.

 

A small Update: Taking Mucuna gave me mild orthostatic hypotension. So I have stopped taking it, but it did improve some of my symptoms for the few days I took it. So I believe victory is possible, but likely not with a direct dopamine agonist. Dopamine agonists can cause hallucinations and psychosis-like symptoms in some people, so it's best avoided and it isn't a cure for our condition, as much as some of us would love to just find a way to end our misery. However, it is the only dopamine agonist I've come across in my research that's Ayurvedic and isn't known to worsen dyskinesias, that's not to say it can't. I would much rather utilize p5p and niacin, exhaust options like Vit E, C, K, and BCAAs first to naturally normalize than go back into the territory of being hooked on a supplemental source of dopamine. Vitamin K2-MK4, does increase dopamine and doesn't cause hallucinations or hypotension, so it may be worth consideration as a simple alternative. K2 is a well-known remedy for POTS.

 

I came across BCAA's as an alternative option for the treatment of Tardive Dyskinesia.

 

I find it oddly strange that all the supplements that folks rave about in mental health forums don't work for us or make us worse. That's because we don't have an organic psychiatric disorder. Our situation is like a deck of cards that collapsed somewhere, we just need to get it back together instead of buying a new one. This is why akathisia or dyskinesias are the only things that make sense (low GABA, dopamine mayhem). The condition doesn't generally respond to psychiatric drugs and usually causes worsening, even breathing exercises for some of us can be a bit much!

 

Once again, my knowledge is only limited to my research. Please tread with caution with anything I have shared.

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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On 2/10/2024 at 10:51 PM, AmitV said:

Definitely akathisia. Every bit of it.

Thanks for responding. can you get akathisia without physical symptoms though? The symptom i described above is purely psychological and only happens when a supplement, food, or a chemical triggers it. I only have restless legs sometimes though.

08/2016-05/2018 Effexor 250mg

05/2018-04/2019 Paxil 40mg
05/2019-08/2020 Effexor 150mg

05/2019 (risperidone for 4 days)
12/2020-12/2021 Effexor 150mg
12/2021-04/2022 Prozac 40mg (cross tappered for 10 days)
02/2022 Abilify 10mg (2 weeks)
04/2022-05/2022 Anafranil 50mg (one month)
05/2022-06/2022 Strattera 40mg (one month), 07/2022 Bupropion 150mg (2 weeks)
07/2022-11/2022 Duloxetine 90mg (with Concerta 54mg and Ritalin 10-20mg)

10/2022 - 11/2022 Quetiapine 25 mg for sleep
02/2023 prozac 20 mg  (3weeks),05/2023 Anfranil 25mg (2 days), 06/2023 Effexor (1 week 37,5mg, 4 days 75mg)

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On 2/10/2024 at 6:24 PM, AmitV said:


i have nothing to add, other than my non evidence based opinion. You should consider seeing a neurologist and consider a functional MRI. It’s the only way to know what you have. My opinion is immaterial. 

 

Surely you understand the difference between an opinion such as "based on me trying X, and experiencing Y, I think Z", which is some of what you shared, and "you don't understand anything, your condition is just X"?

 

One is a valuable opinion to share, and I read them with interest including yours. One is not.

  • 15mg Remeron/Mirtazapine November starting 2022 (severe physical side effects)
  • Attempted to taper off January 2023, ended up having a major breakdown and going up to 30mg, took weeks to stabilise
  • Therapy and self-care helped a lot mentally while stable on the drug (but with bad physical side effects)
  • Tapered off over 4-5 weeks, felt physically better all through taper & sexual side effects & palpitations went away
  • Last dose 20-24th April 2023
  • Severely physically unwell from 2nd May 2023. Had many bad symptoms eg. Palpitations, adrenaline rushes at night etc in the weeks following and couldn't eat. 
  • Many symptoms eventually resolved, but left with severe and debilitating fatigue, poor sleep and sexual side effects.

 

Summary: 5 months using Mirtazapine, including 1 month taper ending late April 2023. Severe withdrawal since.

 

 

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On 2/10/2024 at 10:51 PM, AmitV said:

The general recommendation is to ride it out for atleast 3-6 months, since that’s usually the time frame it drops.

It’s been going on for 8 months without any relief though. And i’m afraid of trying anything right now since I’m reacting to a lot of stuff. This kindling thing is so brutal man I don’t know when will nervous system calm down i can barely make it minute to minute. 

08/2016-05/2018 Effexor 250mg

05/2018-04/2019 Paxil 40mg
05/2019-08/2020 Effexor 150mg

05/2019 (risperidone for 4 days)
12/2020-12/2021 Effexor 150mg
12/2021-04/2022 Prozac 40mg (cross tappered for 10 days)
02/2022 Abilify 10mg (2 weeks)
04/2022-05/2022 Anafranil 50mg (one month)
05/2022-06/2022 Strattera 40mg (one month), 07/2022 Bupropion 150mg (2 weeks)
07/2022-11/2022 Duloxetine 90mg (with Concerta 54mg and Ritalin 10-20mg)

10/2022 - 11/2022 Quetiapine 25 mg for sleep
02/2023 prozac 20 mg  (3weeks),05/2023 Anfranil 25mg (2 days), 06/2023 Effexor (1 week 37,5mg, 4 days 75mg)

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19 hours ago, Moe96 said:

Thanks for responding. can you get akathisia without physical symptoms though? The symptom i described above is purely psychological and only happens when a supplement, food, or a chemical triggers it. I only have restless legs sometimes though.


yes it’s totally “possible”. The sensory and mental seems to be a GABA function, motor symptoms dopamine function. It’s just my very basic understanding of this condition. 

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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3 hours ago, Moe96 said:

It’s been going on for 8 months without any relief though. And i’m afraid of trying anything right now since I’m reacting to a lot of stuff. This kindling thing is so brutal man I don’t know when will nervous system calm down i can barely make it minute to minute. 


I know this feeling. I lived that everyday for over a year. Be patient, I understand the pain

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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Thanks for giving me hope, @AmitV.

08/2016-05/2018 Effexor 250mg

05/2018-04/2019 Paxil 40mg
05/2019-08/2020 Effexor 150mg

05/2019 (risperidone for 4 days)
12/2020-12/2021 Effexor 150mg
12/2021-04/2022 Prozac 40mg (cross tappered for 10 days)
02/2022 Abilify 10mg (2 weeks)
04/2022-05/2022 Anafranil 50mg (one month)
05/2022-06/2022 Strattera 40mg (one month), 07/2022 Bupropion 150mg (2 weeks)
07/2022-11/2022 Duloxetine 90mg (with Concerta 54mg and Ritalin 10-20mg)

10/2022 - 11/2022 Quetiapine 25 mg for sleep
02/2023 prozac 20 mg  (3weeks),05/2023 Anfranil 25mg (2 days), 06/2023 Effexor (1 week 37,5mg, 4 days 75mg)

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On 2/11/2024 at 2:55 AM, AmitV said:

 

IBS, as far as my knowledge goes is a hyper-active nervous system. Ideally, it should resolve with time if that's your only symptom, but if you have mental symptoms, It doesn't hurt to try niacin. Either Niacin or P5P made my digestion much better, but I didn't have symptoms anywhere close to IBS. My understanding is all these symptoms are a result of nervous system hyperactivity or nervous system stress from drug withdrawals. After all rest and digest is a function of the healthy nervous system.

 

I found a reference to GERD somewhere in this link.

 

https://www.holistichelp.net/blog/how-to-increase-gaba-and-balance-glutamate/

Thanks for the link , I read the article but it's all too complicated for me. 
It's comforting to know that "gastoparesis" or whatever is broken there can fix itself
Unfortunately being depressed it is hard to have much hope. I also have other symptoms and niacin probably won't hurt . I have such a preparation neurovit are in it different types of vitamin B.I'm going once to the so-called reflex therapy  to see how it looks like. The person who does it supposedly had bad nerves in her eyes , she learned these treatments and saved her eyesight, and I also got eye problems from WD. It should not do any harm. In general, it is like many  my previous life has passed.

I see that you do a lot of your own research. I have looked at the leaflets from rispolept. quetpinum, etc. and everywhere it mentions stomach problems. Why did the psychiatrist tell me that escitalopram has a protective effect on the gut. I wonder Did he cure everyone's stomach with it, 

 

2022 escitalopram from July 25 2.5 mg, 5 mg, 10 mg August-December- 7.5 mg, 5 mg, (1 month) 2.5 mg - C/T 
WD
2023 Short reinstatement from WD date: 

escitalopram May 25-June 12 5 mg, 2.5 mg plus interrupted

Reinstatement 24 07.23 0.5mg escitalopram, 18.08.23 0.22 escitalopram, 07.09. 0.28
Now 0.30 mg escitalopram 

Last year 6 months on escitalopram, I was very agitated, hypomaniacal and with little need for sleep. 
Since July 2023 reinstated and reduced from 0.50 mg to 0.30 mg Lexapro - difficulty sleeping and lack of sleep, eye pain and IBS. Anhedonia. 

November 2023 - 0mg

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  • 2 weeks later...
On 2/13/2024 at 6:31 PM, modelarz71 said:

Thanks for the link , I read the article but it's all too complicated for me. 
It's comforting to know that "gastoparesis" or whatever is broken there can fix itself
Unfortunately being depressed it is hard to have much hope. I also have other symptoms and niacin probably won't hurt . I have such a preparation neurovit are in it different types of vitamin B.I'm going once to the so-called reflex therapy  to see how it looks like. The person who does it supposedly had bad nerves in her eyes , she learned these treatments and saved her eyesight, and I also got eye problems from WD. It should not do any harm. In general, it is like many  my previous life has passed.

I see that you do a lot of your own research. I have looked at the leaflets from rispolept. quetpinum, etc. and everywhere it mentions stomach problems. Why did the psychiatrist tell me that escitalopram has a protective effect on the gut. I wonder Did he cure everyone's stomach with it, 

Psychiatrists are like magicians. They show one thing, hide the reality in the other hand.

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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  • Mentor
4 hours ago, AmitV said:

Psychiatrists are like magicians. They show one thing, hide the reality in the other hand.

More than one has told me not to read the informational inserts/potential side effects when starting a new medication.

Pronouns: they/them/theirs 

Started on Prozac in early 2000s to treat cPTSD, been on various cocktails ever since.

2002-2004, 2017-2022: Buspar, tapered down to 0

2016-present: 100mg Seroquel for sleep -> May 2023: 90mg -> June 2023: 81mg -> September 2023: 72mg -> switched to brand name, much too strong, down to 60mg -> October 2023: 54mg -> November 2023: 50mg -> January 2024: 45mg -> April 2024: 40.5mg

2016-Present: 100mg Wellbutrin SR -> January 2023: 75mg IR (37.5mg 2x a day) -> February 2023 (33.75mg 2x a day) -> July 2023 (30.37mg 2x a day) -> August 2023: 27.33mg 2x a day 

2018-present: 25mg Pristiq

2015-present: 600mg Gabapentin (200mg 3x a day) -> December 2022: 300mg Gabapentin (100mg 3x a day) per GP's recommendation after side effects -> March 2023: 90mg 3x a day (switched to liquid suspension) -> April 2023: 81mg 3x a day -> September 2023: bad generic, switched back to homemade liquid; too strong after bad generic, down to 70mg 3x a day, still bad. Adjusted slowly till at 60mg 3x a day, much better. Long hold till -> December 2023: 54mg, still feels too high after November Seroquel switch from brand name to generic, doc recommended 50mg which feels better -> January 2024: When Wellbutrin went down, Gabapentin started putting me to sleep, went down to 45mg, then 41mg to stay awake, so far so good -> February 2024: 36mg, still too high, 34mg -> March 2024: 31mg, STILL too high, 30mg

Supplements: Multivitamin w/magnesium, probiotics, digestive enzymes, anti-viral nitric oxide nose spray as needed

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On 2/22/2024 at 11:59 AM, littlebird said:

More than one has told me not to read the informational inserts/potential side effects when starting a new medication.


Because if you did, they’d be out of business.

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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I want to share a few resources with the group to better serve not just FND aspect but also drug induced hyperkinetic disorders and Parkinsonism. Upto 18 months is usually the time frame of reversal of these disorders. However, it’s important to be aware to avoid any misdiagnosis.

 

https://www.healthline.com/health/parkinsons/drug-induced-parkinsonism#effects-from-toxins
 

https://www.parkinsons.org.uk/sites/default/files/2018-09/FS38 Drug induced parkinsonism_0.pdf
 

Scroll down to see table 4

https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2021.659805/full
 

https://www.flintrehab.com/basal-ganglia-brain-damage/

 

https://medlineplus.gov/ency/article/001069.htm


The most important document if you see yourself in any of the above. I believe @Faust followed this document. But since he/she doesn’t return to answer any questions, I can only speculate this is the relevant info.
 

https://hmlfunctionalcare.com/wp-content/uploads/2021/04/Basal-Ganglia-Nutrition-Kharrazian-.pdf

 

@LostInCanada I don’t know if any of this applicable to you or not. But seems like vitamin c and e are contradicted in drug Parkinsonism, not to be confused with progressive version of disease. Any how with the recovery you’ve made, just steer the course.


https://www.parkinsons.org.uk/sites/default/files/2018-09/FS27 Eyes and Parkinson's WEB.pdf

 

All these are generally known as drug induced Extrapyramidal syndromes, which also includes akathisia and dyskinesia’s. No GPs, psychiatrists, neurologists recognize these. Until you bang on the door of a “movement disorder neurologist”. Nothing shows up on any testing except for a datscan. 
 

@LukeUK this may be of interest to you from a drug-damage standpoint. I never said I’m an expert. I’m trying to understand what I have and heal from it.

 

 Once again serotonin is hoax. Dopamine and glutamate (oxidative stress and free radicals) is what breaks us!

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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@AmitV thanks so much. Appreciate all your research on this. It's just crazy how intricately connected everything is and how these drugs cross so many barriers. Definitely overkill. 

20 yr+ Paroxetine/ Dec2018-May 2022 20 mg/ May 2022 30mg/2022.07.28-2022.08.24 30mg to 0mg/ August 24-29 2022 10mg Prozac/2022.11.28-2022.12.04- 5mg Paroxetine/Dec 5&6/22 10mg Paroxetine/ Dec 8&9/22 10mg Prozac/ 2022.12.07 to 2023.07.01 5mg Paroxetine

TAPER 23.07.02-58mgpw/4.9mgai/ 23.07.21-4.8 mg/23.07.28-4.73 mg/23.08.04-4.65 mg/21.09.23-4.58 mg/27.10.23-4.56 mg/5.12.23-4.54 mg/2.1.24-4.52 mg/9.1.24-4.51 mg/17.1.24-4.49 mg/26.1.24-4.47 mg/6.2.24-4.46 mg/19.2.24-4.44mg /4.4.24-4.43mg/28.4.24-4.4mg/5.5.24-4.39 mg

8am-probiotics/9am-paroxetine, 200mg mag bisglycinate/ 1000mg Vitamin D/noon-1000 mg algae oil (500mg DHA/10mg EPA/620mg Omega 3)/5pm-75 mg DGL/200mg calcium citrate/8pm-.25 mg melatonin

"... your strength will be in keeping calm..."-Isaiah 30:15

I am not a medical professional just your peer. The suggestions I give are based on personal experience and/or the well documented experience of others.

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Hello, can you explain how restoration helps with "building collapse" I have read that the sleep myoclonus I have and the symptoms of gastroparesis are due to nerve damage (?)
I have already restored 5mg once and "collapsed digestion" happend and the psychiatrist would now like even 15 mg of esci but if the building collapsed what will that do...thank you 
 

 

2022 escitalopram from July 25 2.5 mg, 5 mg, 10 mg August-December- 7.5 mg, 5 mg, (1 month) 2.5 mg - C/T 
WD
2023 Short reinstatement from WD date: 

escitalopram May 25-June 12 5 mg, 2.5 mg plus interrupted

Reinstatement 24 07.23 0.5mg escitalopram, 18.08.23 0.22 escitalopram, 07.09. 0.28
Now 0.30 mg escitalopram 

Last year 6 months on escitalopram, I was very agitated, hypomaniacal and with little need for sleep. 
Since July 2023 reinstated and reduced from 0.50 mg to 0.30 mg Lexapro - difficulty sleeping and lack of sleep, eye pain and IBS. Anhedonia. 

November 2023 - 0mg

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On 2/27/2024 at 2:25 PM, LostInCanada said:

@AmitV thanks so much. Appreciate all your research on this. It's just crazy how intricately connected everything is and how these drugs cross so many barriers. Definitely overkill. 


I know, it’s kinda crazy. Withdrawal from SSRI that increases dopamine, is the same mechanism that causes loss of dopamine. The only problem being recognition. Had I hit my head somewhere, they’d recognize it and treat me accordingly. Since it was a drug, they’re like enh hypochondriac.

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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On 2/27/2024 at 2:33 PM, modelarz71 said:

Hello, can you explain how restoration helps with "building collapse" I have read that the sleep myoclonus I have and the symptoms of gastroparesis are due to nerve damage (?)
I have already restored 5mg once and "collapsed digestion" happend and the psychiatrist would now like even 15 mg of esci but if the building collapsed what will that do...thank you 
 


Myoclonus is a treatable hyper kinetic drug induced disorder. The problem with hyperkinetic disorders is hyperarousal is a common theme. 
 

drug induced hyperkinetic disorders (dyskinesia) are:

- akathisia

-parkinsonism

- myoclonus

- tremors

- twitches

- serotonin syndrome

- neuroleptic malignant syndrome

- chorea

 

I personally had myoclonus, it took 4 months before it completely went away. But it was horrible each time I got it. Typically the time frame for these disorders to improve is 18 months. 
 

these hyperkinetic disorders (dyskinesias) are not nerve damage. These are disorders of dopamine dysfunction in basal ganglia. Which also causes dysautonomia, hyperarousal. Dysautonomia causes gastric problems. 

 

one might think how can one have a dysfunction upon withdrawal. Post synaptic dopamine receptor dysregulation causes these “treatable” dyskinesias. The comparable disease version of these disorders, such as Parkinson’s disease, huntingtons, Wilson’s, supra-nuclear palsy, the dysfunction is pre-synaptic dysfunction which is mostly untreatable.

 

This is why even people with kindled brains can fully recover, because the key difference is post synaptic stabilization which is filled with free radicals. Hyperarousal, anxiety, depression, hypervigilance, ocd, is very common in basal ganglia disorders due to free radical release (glutamate).

 

These may help, but it’s at your own risk. I’m not recommending anything simply sharing resources:

 

https://hmlfunctionalcare.com/wp-content/uploads/2021/04/Basal-Ganglia-Nutrition-Kharrazian-.pdf
 

https://isom.ca/wp-content/uploads/2020/01/JOM_1976_05_1_02_Manganese_and_Niacin_in_the_Treatment_of_Drug-.pdf


https://rxisk.org/pyridoxal-5-phosphate-and-akathisia/

 

understand that even supplements can sometimes cause adverse reactions. some people have reported opposite effect from p5p. So it’s important bear these things in mind.

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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Hey @AmitV what symptoms do you still get? What percentage of recovery do you think you have experienced? I am so afraid to try anything new in case it makes me worse. 

20 yr+ Paroxetine/ Dec2018-May 2022 20 mg/ May 2022 30mg/2022.07.28-2022.08.24 30mg to 0mg/ August 24-29 2022 10mg Prozac/2022.11.28-2022.12.04- 5mg Paroxetine/Dec 5&6/22 10mg Paroxetine/ Dec 8&9/22 10mg Prozac/ 2022.12.07 to 2023.07.01 5mg Paroxetine

TAPER 23.07.02-58mgpw/4.9mgai/ 23.07.21-4.8 mg/23.07.28-4.73 mg/23.08.04-4.65 mg/21.09.23-4.58 mg/27.10.23-4.56 mg/5.12.23-4.54 mg/2.1.24-4.52 mg/9.1.24-4.51 mg/17.1.24-4.49 mg/26.1.24-4.47 mg/6.2.24-4.46 mg/19.2.24-4.44mg /4.4.24-4.43mg/28.4.24-4.4mg/5.5.24-4.39 mg

8am-probiotics/9am-paroxetine, 200mg mag bisglycinate/ 1000mg Vitamin D/noon-1000 mg algae oil (500mg DHA/10mg EPA/620mg Omega 3)/5pm-75 mg DGL/200mg calcium citrate/8pm-.25 mg melatonin

"... your strength will be in keeping calm..."-Isaiah 30:15

I am not a medical professional just your peer. The suggestions I give are based on personal experience and/or the well documented experience of others.

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17 hours ago, LostInCanada said:

Hey @AmitV what symptoms do you still get? What percentage of recovery do you think you have experienced? I am so afraid to try anything new in case it makes me worse. 


i have visual snow syndrome, tinnitus. Swaying, things around me moving, tilting. Poor depth perception. Weird things in peripheral vision. Akathisia. Wobbly feet. Extreme slowness. Cold feet. parasthesia. Pretty much everything Faust described, plus visual snow syndrome.
 

psych says I may have drug induced Parkinsonism (Extrapyramidal syndrome). Naturally neurologists don’t know anything. They’ve never heard of it, which basically means they’ve seen it, but not acknowledged it.

 

P5P, niacin helped with akathisia, and hyperkinetic tremors. Once those resolved it unmasked the Parkinsonism. 
 

I’m taking antioxidants, b vitamins, etc. but recovery is very slow. Nothing happens or works overnight. I don’t know how long it will take. 

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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5 minutes ago, AmitV said:

don’t know how long it will take

Sorry to hear you still are dealing with so much as well. I try to embrace it but some days it's hard. ❤️🙏

20 yr+ Paroxetine/ Dec2018-May 2022 20 mg/ May 2022 30mg/2022.07.28-2022.08.24 30mg to 0mg/ August 24-29 2022 10mg Prozac/2022.11.28-2022.12.04- 5mg Paroxetine/Dec 5&6/22 10mg Paroxetine/ Dec 8&9/22 10mg Prozac/ 2022.12.07 to 2023.07.01 5mg Paroxetine

TAPER 23.07.02-58mgpw/4.9mgai/ 23.07.21-4.8 mg/23.07.28-4.73 mg/23.08.04-4.65 mg/21.09.23-4.58 mg/27.10.23-4.56 mg/5.12.23-4.54 mg/2.1.24-4.52 mg/9.1.24-4.51 mg/17.1.24-4.49 mg/26.1.24-4.47 mg/6.2.24-4.46 mg/19.2.24-4.44mg /4.4.24-4.43mg/28.4.24-4.4mg/5.5.24-4.39 mg

8am-probiotics/9am-paroxetine, 200mg mag bisglycinate/ 1000mg Vitamin D/noon-1000 mg algae oil (500mg DHA/10mg EPA/620mg Omega 3)/5pm-75 mg DGL/200mg calcium citrate/8pm-.25 mg melatonin

"... your strength will be in keeping calm..."-Isaiah 30:15

I am not a medical professional just your peer. The suggestions I give are based on personal experience and/or the well documented experience of others.

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Please understand if you have akathisia and other movement issues. Please review this.

 

 

and this. It's a form of drug induced movement disorders and parkinsonism. OCD, Depression, anxiety is a symptom of this condition.

 

Drug-Induced Parkinsonism - PMC (nih.gov)

 

Microsoft Word - Basal Ganglia Nutrition.docx (hmlfunctionalcare.com)

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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@AmitV Did you say you have pppd? Or at least symptoms of it? I have decided mine is definitely caused by withdrawal, and it’s the main & really only very bothersome symptom I have right now. 
 

I know you’ve done a lot of research, & I read the link you posted here earlier about pppd. But I didn’t get much treatment suggestions for it. I follow the steady coach, but not sure how well her stuff works when the main cause is WD. I am doing all her suggestions that I can, but it keeps getting worse each time I drop.

 

Any supplements you’d suggest for that specifically? Tia!! 
Sorry you’re still dealing with so many symptoms.

May 2019 started lexapro 2.5 mg; 2020 went to every other day; 2021 beginning of Mar, tried to stop but had insomnia; Mar 30, 2021 reinstated 1.25 ev other day, WD symptoms, not enough

April 19, 2021 started liquid, .85 mg/day; May 1, 2021 .8 mg, May 6 .75 mg; June 6 .7 mg, June 20 .65mg, June 30  .6mg, Jul 24 .55 mg, Oct 17 .5 mg, Dec 5- .45 mg; Jan 26, 2022- 4mg,  April 18- .375 ; April 24- .35; April 29- .3; Jun 12- .25 mg; Jun 28- .2 lex; Sept- .15 mg, Nov .1- long hold, never got better

June ‘23- PPPD started 🙁, Jun- .09, Jul- .08, Oct- .07, Dec- .06, Jan ‘24- .05!

Taking Magnesium, whole foods iron, & natural supplements as needed for sleep

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On 3/3/2024 at 4:50 PM, Dee12h said:

@AmitV Did you say you have pppd? Or at least symptoms of it? I have decided mine is definitely caused by withdrawal, and it’s the main & really only very bothersome symptom I have right now. 
 

I know you’ve done a lot of research, & I read the link you posted here earlier about pppd. But I didn’t get much treatment suggestions for it. I follow the steady coach, but not sure how well her stuff works when the main cause is WD. I am doing all her suggestions that I can, but it keeps getting worse each time I drop.

 

Any supplements you’d suggest for that specifically? Tia!! 
Sorry you’re still dealing with so many symptoms.


first things first, Stop dropping dosages. When you’re this stressed, there’s a predisposition of the mind to focus on getting rid of the poison. I get it. That’s ultimately the goal.
 

Mine feels like pppd. But this stuff is really complex. If you didn’t have spinning vertigo or dizziness at some point, then likely not pppd. The fact that it gets worse with drops, likely not pppd.  Likely withdrawal akathisia (immense stress) causing symptoms. The glutamate imbalance in withdrawal akathisia is the “stress chemical”, the steady coach talks about.
 

These are worth a shot, P5P is not a Benzo, but it activates the liver enzymes that perform the natural function of a Benzo. Converts the stress chemical glutamate to gaba.

 

Unfortunately for me, my symptoms are quite hell. Much like fausts story, but I’ve had a big bump in improvement since I began the supplements. I did not take vitamin E, didn’t go well with me. 
 

practically every supplement he’s listed is one way or the other a glutamate converter, blocker or nmda antagonist. Turns down the stress chemical, gives damaged neurons a chance to regenerate and neuroplasticity to perform its function.

 

https://rxisk.org/pyridoxal-5-phosphate-and-akathisia/

 

https://isom.ca/wp-content/uploads/2020/01/JOM_1976_05_1_02_Manganese_and_Niacin_in_the_Treatment_of_Drug-.pdf

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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@AmitVdo you think we can recover from VSS/HPPD hairy camel?

Lexapro 10-20mg 2016-2018 2 full years cold turkey no withdrawals, Lexapro 10-20mg 01/2021-08/2022 cold turkey missed doses, alternated between high and low doses, no withdrawals

1/7-1/14/2023 Ciprofloxacin for 1 week 500mgx2 in January 2023, resulted in headaches that went away in 2 months

3/21-3/35/2023 Oxybutinin for 4 days 

3/21-3/30/2023 Ofloxacin 400*9 days in March, gave me insomnia

3/23-3/25/2023 Passiflora+Valerian Capsule for 2 nights, doesn't work.

3/26-3/29/2023 Unisom (Doxylamine) for three nights, it would work on the second night but would not do anything on the 3rd.
03/29-05/10/2023 Mirtazapine 7.5mg/15mgs depending on the night this also would work for 3 nights, I would switch to Unisom every 4th night. Took for a total of 15-20 times in 42 nights.

5/11/2023 Atarax(hydroxine) only once but spiked my tinnitus and gives me DP/DR in the morning, after this I could fall a sleep on my own with no meds. Later on Unisom also spikes my tinnitus. 

06/01/2023 Brain Zaps start, I get back to alternating mirtazapine,passiflora, melatonin,  for 40+ more days. Symptoms got worse.

06/15/2023 Trazodone 50MGs once. Did nothing.

3/2023 - 9/2023 NAC, Alpha lipoic Acid, Magnesium, Vitamin C, Vitamin D, Calcium. Once or twice I took 5HTP and L-theanine. Took Fish Oil Omega-3 for 1-2 months.

11/8/2023 250mgs of Keppra ONCE.

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@AmitV

Hope you’re getting some relief.

 

I took p5p two days in a row- 15mg & then 10 mg. First I got euphoria (not super strong), then felt very bad with muscle twitching & much worsening of my dizziness & dissociation, head pressure, then got really sleepy. It happened both times. I guess that’s an adverse reaction. 😒

 

I got some niacin & manganese to try later.

It seems everything (substance) that helps my mood/anxiety makes my dizziness worse. 🤷🏻‍♀️

May 2019 started lexapro 2.5 mg; 2020 went to every other day; 2021 beginning of Mar, tried to stop but had insomnia; Mar 30, 2021 reinstated 1.25 ev other day, WD symptoms, not enough

April 19, 2021 started liquid, .85 mg/day; May 1, 2021 .8 mg, May 6 .75 mg; June 6 .7 mg, June 20 .65mg, June 30  .6mg, Jul 24 .55 mg, Oct 17 .5 mg, Dec 5- .45 mg; Jan 26, 2022- 4mg,  April 18- .375 ; April 24- .35; April 29- .3; Jun 12- .25 mg; Jun 28- .2 lex; Sept- .15 mg, Nov .1- long hold, never got better

June ‘23- PPPD started 🙁, Jun- .09, Jul- .08, Oct- .07, Dec- .06, Jan ‘24- .05!

Taking Magnesium, whole foods iron, & natural supplements as needed for sleep

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@AmitV, yesterday I began trialing P5P for acute, unrelenting akathisia lasting over a decade. After a month, I'll update my own thread with my full results, including starting niacinamide next week. But, to give hope and anecdotal credence to what you've been discussing - - I am better. I felt calmer within hours of taking 50 mg. I slept with less violent dreams last night, and the terror is ramped down.

I peaked at 250 mg this afternoon with nausea (my GI tract is absurdly sensitive) and am holding till tomorrow. I'm doing 50 mg capsules. I've read everything you posted and the additional online from recognized clinical sources. I don't expect a miracle but I've already seen it helps me a lot. 

There's the issue of the long half-life (15-33 days... It's all over the place as you know) and possible peripheral neuropathy, which is nothing compared to the ghastly way I live. 

Again, I will update on my thread soon but wanted the community to know my initial reaction. It's so quickly metabolized in this state (vs regular B6) that you do know if it's working. I can't take B12, magnesium and many other supplements without imminent distress. So this is a good start. 

More later.... 

 

 

* Fluoxetine: 40 mg 1999-2012; 60 mg 2012-March 2019;  45.2 mg at present.

* Provigil: 25-100 mg PRN 2005 to mid-2015; 200-300 mg mid-2015 to early 2016; tapered from 300 mg in early 2016 to 100 mg early 2017; tapered from 100 mg early 2017 to 33 mg June 15, 2019;  8.9 mg at present.

* Amitriptyline: 10-15 mg 2002-2013; 25 mg 2014 to December 5, 2018; December 15, 2018 converted to water suspension and tapered to 16.5 mg at present

* Diazepam: 5 mg at night 2002-present

 Supplements: Iron for anemia

Recent tapering timeline:

2019:  Fluoxetine 60 mg        Provigil 33.5 mg      Amitriptyline 25 mg   Diazepam 5 mg

2022:          45.2 mg                      8.9 mg                     16.5 mg                        5 mg

Back Story: From 2012 thru early 2017, relocated and cycled through over 20 primary and psych docs (supposedly for severe Chronic Fatigue Syndrome) who prescribed two dozen different psych meds in search of the "perfect therapeutic combo." Took most for only a few days, some for a week. Included Wellbutrin, Cymbalta, Lexapro, Seroquel, Lamictal, Klonopin, Lyrica, Gabapentin, Belsomra, Tramadol, Librium, Halcyon, Remeron and -- the last straw, Trintellix. Began in early 2016 when it was still called Brintellix (Pharma's attempt to combine the words "brilliance" and "intelligence" in a pill name), became unable to eat or sleep, lost 25 lbs and the ability to speak. Slowly tapered myself back to Prozac by 2017 but was unable to stop akathisia, cortisol mornings and kindling which continue, actively, through present.

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On 3/5/2024 at 10:12 PM, ShadowDancer said:

@AmitVdo you think we can recover from VSS/HPPD hairy camel?


I hope so . P5P was a good start for me. It took away 40% of my HPPD symptoms within a few days, but the remaining 60% are there. Thankfully my dp/dr dropped with it. That was total mental hell!! 
 

but my research has led me to believe ultimately the answer is keppra, memantine or clonazepam. All akathisia and drug induced Parkinsonism safe. None of them touch dopamine, and all either reduce glutamate or stimulate gaba. Granted, clonazepam is a Benzo. So there’s that. But worth trying magnesium l-threonate and P5P before considering anything else. It’s impossible to find a neurologist or even a psychiatrist who understands HPPD/vss. Everyone has a different take on it, if they do know about it. Some see it as anxiety, some chronic pain, some FND, some as a form of psychosis. So really, it leaves us to fend for ourselves. It’s a tough one to crack with the help of medical community. But my belief is that it’s on the same lines as drug induced akathisia (hyper active subjective and objective restlessness), drug induced dyskinesia (hyperactive Parkinsonism), drug induced HPPD/vss (hyper active visual perception). Both akathisia and HPPD come with DP/DR. 
 

If you think about it, pretty much everyone who got hppd from a “bad trip” talks about akathisia like subjective experience. 

Jan 1-15 2023 - Ativan 2mg

Jan 1-12 2023 - Trintellix 10mg

Jan 14-16 2023 - Escitalopram 5mg

Jan 15-Jan 20 2023 - Ativan 1mg

Jan 21-30 2023 - Ativan 0.5mg Slow taper down - 5 days 0.5mg once a day. Then 0.5 mg every other day for 3 doses.

Jan 17- Feb 04 2023 - Escitalopram 10mg

Feb 05-14 2023 - 5mg for 5 days, then 2.5mg for 4 days. Feb 15 - Zero Mg Escitalopram

Mar 11, 2023 - Propranolol 20mg

 

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