WilliamAtheling: Off ADs for first time in thirty years

October 23, 2019

Hi All

Brief intro.

60 years old

Been on every SSRI, SNRI, Tricyclics, XYZ since 1987

Maintained employment (just)

Ghastly symptoms while taking, so “tapered off”

Last med amitriptyline, which I stopped six weeks ago

Feel worse now than when taking ADs

Likely to be relapse into underlying condition as opposed to discontinuation syndrome

Apart from that fe fine.

October 24, 2019

My mnemonic for my symptoms:

Shaking

Stiffness

Eye sensitivity

Exhausted

Anguish

Dizzy

Pain

October 24, 2019

Hello WA and welcome to SA.

This site is run entirely by volunteer Administrators and Moderators, all have been through or going through withdrawal.

There are no commercial interests or influences involved .

On 10/23/2019 at 6:24 PM, WilliamAtheling said:

Last med amitriptyline, which I stopped six weeks ago

What dose of Amytriptyline were you taking?

Did you cold turkey or taper?

If you tapered, how fast?

What symptoms are you currently experiencing.

dr-joseph-glenmullens-withdrawal-symptom-checklist/

On 10/23/2019 at 6:24 PM, WilliamAtheling said:

Likely to be relapse into underlying condition as opposed to discontinuation syndrome

From the very brief info you have given and the timeframe it is more likely to W/D (withdrawal)

the-windows-and-waves-pattern-of-stabilization/

why-taper-by-10-of-my-dosage/

It is important to understand that cold turkey is not a fast way off these drugs, I know I did it.

You would be better to reinstate a small dose to mitigate the withdrawal symptoms.

about-reinstating-and-stabilizing-to-reduce-withdrawal-symptoms/

Under no circumstances should you reinstate without asking us to suggest a dose.

Please feel free to browse the site, it is a wealth of info.

Other members threads will give you an insight and the opportunity to share experiences.

Sassenach

Again welcome.

Sassenach

October 24, 2019

There is apparently a new study out that says withdrawal symptoms are proportional to the length of time on the drugs. I have found working with people on here that the length of time it takes to get off the drugs safely is usually proportional to length of time on the drugs as well, and that tapering is a slower process as we get older.

If I could find someone willing to take the bet, and if there was a way to prove whether I was right or wrong (no actual studies have been done on long term use of ADs) -- I would bet my entire life savings and every penny I'm worth that you're experiencing withdrawal, not some vague "return of the original condition" (honestly if you've been on these drugs since 1987 there is no way your brain is in anything like its original condition anyway).

Then I could retire early, so that would be fantastic.

All joking aside, please read everything you can get your hands on here on this website, and take the moderators' advice regarding reinstatement and tapering. I fear if you don't, things are going to get very rough for you. I know it's a lot to learn, nobody has taught us about withdrawal syndrome and doctors know nothing about it as these drugs were approved after studies lasting at most three months. It is a bit of a shock to find out the truth of what happens with these drugs over the long term. Please educate yourself, you sound like an intelligent person, and I hate to see anyone suffer.

October 24, 2019

On 10/23/2019 at 6:24 PM, WilliamAtheling said:

Last med amitriptyline, which I stopped six weeks ago

What dose of Amytriptyline were you taking?

Did you cold turkey or taper?

If you tapered, how fast?

What symptoms are you currently experiencing.

dr-joseph-glenmullens-withdrawal-symptom-checklist/

Response

I was on amitriptyline for twelve months. First six months to get to 100mg, then another six months to get to zerp😡 (25, 50, 75, 100, 75, 50, 25, 0) I had horrendous symptoms while on, so medics agreed I could come off. Towards the end I was on 25mg for about a month prior to zilch. I guess this may constitute cold turkey??

Current symptoms-as explained in my mnemonic above. Shakes- mainly head, but all over. Fairly constant, standing, sitting etc. Stiffness- mainly awful muscular tension around face, neck, jaw etc (has this for many years prior to amitriptyline) Eyes- awful photo sensitivity, where everything a glare/vivid, whether light or dark. Exhausted- too tired to do more than v moderate walk. Breathlessness after only twenty minutes on moderate treadmill. Anguish- this is by far the worst. Impossible to communicate without getting confused, anger outbursts, memory lapses etc. Pain- neuro type pain throughout body, arms and legs, like someone pulling a needle up and down my spine, like wearing a thick pair of socks from knees to ankles on both legs, producing numbness and pins and needles.

On 10/23/2019 at 6:24 PM, WilliamAtheling said:

Likely to be relapse into underlying condition as opposed to discontinuation syndrome

From the very brief info you have given and the timeframe it is more likely to W/D (withdrawal)

the-windows-and-waves-pattern-of-stabilization/

why-taper-by-10-of-my-dosage/

It is important to understand that cold turkey is not a fast way off these drugs, I know I did it.

You would be better to reinstate a small dose to mitigate the withdrawal symptoms.

about-reinstating-and-stabilizing-to-reduce-withdrawal-symptoms/

Under no circumstances should you reinstate without asking us to suggest a dose.

Please feel free to browse the site, it is a wealth of info.

Other members threads will give you an insight and the opportunity

Response

Thanks.

I’m sure the amitriptyline discontinuation is a big factor. However, I’m equally worried by impact if brain rewiring and chemical changes caused by years on venlafaxine, mirtazapine, cymbakra, lyrica, Prozac etc etc.

My “discontinuation syndrome” has deteriorated rapidly in last day or do. Unbearable mental anguish, agitation and confusion. I would willingly take more of the physiological stuff if these symptoms eased. I find this mental anguish truly terrifying. I’ve read a lot of the stuff about chemical depletion, but evidence suggests my brain inability to produce the right quantity of neuro transmitters is destroying me.

Posted 39 minutes ago

There is apparently a new study out that says withdrawal symptoms are proportional to the length of time on the drugs. I have found working with people on here that the length of time it takes to get off the drugs safely is usually proportional to length of time on the drugs as well, and that tapering is a slower process as we get older.

If I could find someone willing to take the bet, and if there was a way to prove whether I was right or wrong (no actual studies have been done on long term use of ADs) -- I would bet my entire life savings and every penny I'm worth that you're experiencing withdrawal, not some vague "return of the original condition" (honestly if you've been on these drugs since 1987 there is no way your brain is in anything like its original condition anyway).

Response

Agree about inevitable impact of 30 years usage.

Then I could retire early, so that would be fantastic.

All joking aside, please read everything you can get your hands on here on this website, and take the moderators' advice regarding reinstatement and tapering. I fear if you don't, things are going to get very rough for you. I know it's a lot to learn, nobody has taught us about withdrawal syndrome and doctors know nothing about it as these drugs were approved after studies lasting at most three months. It is a bit of a shock to find out the truth of what happens with these drugs over the long term. Please educate yourself, you sound like an intelligent person, and I hate to see anyone suffer.

Response

I had ghastly symptoms and was terrified on the various ADs. I thought I would rather have ghastly symptoms and be terrified while not medicated. My problem is that six weeks in, I feel worse than on ADs

Thank you

October 24, 2019

Hello William,

Welcome to SA.

Sorry about what you're going through and the years of AD effects, etc. you've gone through courtesy of the medical profession and big pharma.

The SA website is a goldmine of information on WD, ADs, etc. When I joined this June I was completely overwhelmed by the amount of information here. For searching this website - it has been suggested to use google to search your topic of interest + surviving antidepressants. The moderators and contributors are experts and I hope you will heed their advice.

I have also used ADs for years - now 57 years old.

I CT'd off cymbalta in summer of 2018 (under advice of MD), reinstated in September and nearly CT again in December. All this I did before coming to SA.

SA is a community of people from Australia to the Americas and are going through the WD from ADs. Welcome.

Giuilietta

October 24, 2019

Welcome, William.

It is far more likely you have withdrawal syndrome from tapering too fast than a relapse. After 30 years, your nervous system and body are thoroughly remodeled by the drugs. You're not stepping in the same neurological river you stepped in 30 years ago.

If I were you, I'd immediately reinstate 5mg amitriptyline. At this low dose, it's less likely to cause adverse reactions. This topic explains how to take a small dose Tips for tapering off amitriptyline

You'd stay on this for some months then taper off by miniscule amounts. Please let us know how you're doing throughout the process.

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

3 hours ago, Rhiannon said:

There is apparently a new study out that says withdrawal symptoms are proportional to the length of time on the drugs.

@Rhiannon link, please! For the record, I have found that the association between withdrawal symptom severity and length of time on the drugs is very loose.

October 24, 2019

31 minutes ago, Altostrata said:

Welcome, William.

It is far more likely you have withdrawal syndrome from tapering too fast than a relapse. After 30 years, your nervous system and body are thoroughly remodeled by the drugs. You're not stepping in the same neurological river you stepped in 30 years ago.

If I were you, I'd immediately reinstate 5mg amitriptyline. At this low dose, it's less likely to cause adverse reactions. This topic explains how to take a small dose Tips for tapering off amitriptyline

You'd stay on this for some months then taper off by miniscule amounts. Please let us know how you're doing throughout the process.

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

@Rhiannon link, please! For the record, I have found that the association between withdrawal symptom severity and length of time on the drugs is very loose.

Thanks for your interest. I may have to reinstate as advised. It’s v frustrating as I could almost tolerate the physiological symptoms, albeit ghastly. It’s this v recent mental anguish and agitation that’s both unbearable and terrifying. Is this also attributed to abrupt discontinuation? Could that be brain switched off it’s serotonin production capacity? Does that turn the brain into a combination of scrambled egg and Swiss cheese?

(Can go back to about 2006 re meds record. Don’t have personal record of previous twenty years)

Thank you

October 24, 2019

You are experiencing antidepressant withdrawal syndrome. Not news to us here.

That small reinstatement may reduce your symptoms very quickly. Please let us know what happens.

October 24, 2019

Apparently my chosen signature "does not meet the guidelines". Thanks

October 25, 2019

There is a length limit of 12 lines. Please try again.

October 25, 2019

Thanks. When you say 12 lines, do you mean 12 bullets? (I see others have far more than 12 lives of text)

Will recast and post later.

October 25, 2019

9 hours ago, Altostrata said:

Welcome, William.

@Rhiannon link, please! For the record, I have found that the association between withdrawal symptom severity and length of time on the drugs is very loose.

What I saw was a Twitter thread by Mark Horowitz retweeted by Michael Hengartner, discussing what appears to be a session presented at some kind of conference or gathering...I wish I knew how to copy tweets, is there a way I can post that here? Dangit. I've replied to Horowitz asking him if there's a study I can cite.

I found it on Hengartner's feed, I think you have to go farther back to find it on Horowitz's. I will retweet it myself and @ you.

October 25, 2019

Agreed with @Altostrata on this one, @Rhiannon. I was personally on the same drug as William here but on 10 mg for only 3 months. Still, I experienced debilitating and disabling withdrawal after a too-fast “slow” taper. I am in my 20’s. There are many others on here with similar timelines. Being in the drug for a short amount of time or being young did not spare us from the worst of WD.

@WilliamAtheling, I have experienced the very same breathlessness you describe, as well as photophobia and emotional distress. Amitriptyline is a tricyclic and considered to be a “messy” drug because it affects not only serotonin, but dopamine and norepinephrine too, which are important neurotransmitters for movement and emotion. Thus you can expect movement issues and energy depletion in withdrawal. But hang on, you have found the right place. This may be the hardest road you will have to walk but you will find a deep sense of strength within. Do read the valuable information on this site. Consider the reinstatement Alto suggested as well. That was the one thing that turned me around from being in the pits of WD hell. For me I saw clear improvements within 3 days of reinstating. Seems like you are within a good window to reinstate without paradoxical issues.

October 25, 2019

Thanks again Having major league problems covering all the med and dose changes within 12 lines. Will have another play later.

May struggle to get 5mg amitriptyline here in UK, and a tad worried about reaction after a) six week cold turkey, b) earlier side effects on this drug.

October 25, 2019

Just updated signature. Unfortunately, couldn’t factor in 1987-2006 period😡 Think this was anafanil, prothiaden, flupentixol venladaxine etc.

Thanks

October 25, 2019

Hi William

We only need the last 24 months in detail

Date, dose, changes ie. updoses, reductions, tapers.

Before that date a simple list will suffice.

Sassenach.

Edited October 25, 2019 by Sassenach
spelling

October 25, 2019

Ok noted thanks. My twelve month “journey” on amitriptyline is covered in response to query. Prior to that it was one year ven (150ng) preceded by seven years California Rocket fuel (150 mg ven and 30 mg mirt)

October 25, 2019

William link below on how to make the doses you need.

how-to-make-a-liquid-from-tablets-or-capsules/

I have amanded your drug signature to include your Amytriptiline journey.

Are you taking any supplements?

17 hours ago, WilliamAtheling said:

Is this also attributed to abrupt discontinuation?

Please see the link below for symptoms.

dr-joseph-glenmullens-withdrawal-symptom-checklist/

17 hours ago, WilliamAtheling said:

Could that be brain switched off it’s serotonin production capacity? Does that turn the brain into a combination of scrambled egg and Swiss cheese?

No but it will be a long journey, I am 67 and I C/ted and reinstated April after 12 years of Escitalopram.

Sassenach

October 25, 2019

Thanks again. Had. a quick look at video and step by step process. It’s v comprehensive m, but also a tad overwhelming in terms of kit and precision. Do others find this to be the case?

October 25, 2019

It is like most most things, once you get used to the preparation becomes routine.

We can help you with the best way to proceed.and how to ensure you get the correct dose.

Link below may help.

tips-for-tapering-off-amitriptyline/

What dose tablets do you have currently?

October 25, 2019

Hi again

Although my regular prescription ended a few weeks ago. I have some tablets left. I’ve checked and, believe it or not, I actually have a blister pack with 5mg. (Think these were dispensed with others to make up the requisite dose, but I never used them as 5mg only)

Good thing is that this proves the existence of 5mg tablets. All other things being equal, I guess I’d still need to convert to liquid form at some point to reduce from 5mg??

Haven’t said so, but really appreciate your support. I can see why so many value this site so much.

Thanks

October 25, 2019

Thanks for your signature. Reduced font size.

Let us know how you're doing with 5mg. Don't worry about tapering it for now, we have to see how you do.

October 25, 2019

12 hours ago, Rhiannon said:

What I saw was a Twitter thread by Mark Horowitz retweeted by Michael Hengartner, discussing what appears to be a session presented at some kind of conference or gathering...I wish I knew how to copy tweets, is there a way I can post that here? Dangit. I've replied to Horowitz asking him if there's a study I can cite.

I found it on Hengartner's feed, I think you have to go farther back to find it on Horowitz's. I will retweet it myself and @ you.

Yes, I was at that meeting. I'm skeptical about that rule of thumb.

October 26, 2019

Hi again. There is another factor I forgot to mention, In parallel to ADs, I’d been treated for moderate hypertension. (ten years). I was having some elevated readings, despite the meds and there was always a question mark about role of ADs.

A very, very obvious change since coming off amitriptyline is quite significant reduction in BP. It’s as if the BP meds are giving me the readings I should always have had. (Dizzy on waking caused by hypotension also) The monitor I use also shows pulse reading, and this has also dropped a fair bit.

The BP paradigm had changed to such an extent, I’m also thinking that it might negate the need for the BP meds altogether. (Subject to chat with Doc and reinstatement of low dose amitriptyline etc)

Just some more intel and another level of complexity.

Thank you.

October 26, 2019

3 hours ago, WilliamAtheling said:

A very, very obvious change since coming off amitriptyline is quite significant reduction in BP. It’s as if the BP meds are giving me the readings I should always have had. (Dizzy on waking caused by hypotension also) The monitor I use also shows pulse reading, and this has also dropped a fair bit.

Hi William

I asume you mean your readings have dropped to nearer normal but need to clarify.

October 26, 2019

40 minutes ago, Sassenach said:

Hi William

I asume you mean your readings have dropped to nearer normal but need to clarify.

Hi S

Readings while on amitriptyline and its predecessors tended to be circa 140/90 at home (higher in work with all the stress there) Pulse often 90s. It was also v difficult to reduce the diastolic (second figure) All this while taking two BP meds.

Readings since coming off amitriptyline- 120/80, 110/70 etc. Pulse often 55-60. (Would be slightly higher in work situation) I understand these would probably be higher without BP meds, but v obvious improvement. I’d discussed impact of ADs on BP with Doc before. He acknowledged some elevate slightly, also could conflict with BP meds a bit. However, view seemed to be that “you wouldn’t get a stroke or heart attack on 140/90”..

I have to weigh up inevitable increase with reinstatement v awful mental anguish currently experiencing. No win situation.

Thanks

October 26, 2019

4 hours ago, WilliamAtheling said:

A very, very obvious change since coming off amitriptyline is quite significant reduction in BP. It’s as if the BP meds are giving me the readings I should always have had. (Dizzy on waking caused by hypotension also) The monitor I use also shows pulse reading, and this has also dropped a fair bit.

The BP paradigm had changed to such an extent, I’m also thinking that it might negate the need for the BP meds altogether. (Subject to chat with Doc and reinstatement of low dose amitriptyline etc)

This is possible. Since we see such complexity here all the time, it doesn't seem very complex to me. You experienced elevated blood pressure as an adverse effect of the drug or drugs.

@Rhiannon found Mark Horowitz's tweet

Quote

Same relationship exists for severity: longer that patients use antidepressants, the more severe withdrawal is reported to be: in patients with over 3 years of use, more than half report moderately severe or severe symptoms. pic.twitter.com/euAIh951Jw
— Mark Horowitz (@markhoro) October 10, 2019

October 26, 2019

6 minutes ago, Altostrata said:

This is possible. Since we see such complexity here all the time, it doesn't seem very complex to me. You experienced elevated blood pressure as an adverse effect of the drug or drugs.

Sorry, not v complex in its own right. More complex getting health professionals to recognise. Even more complex reconciling the advantages of any AD with risks of the elevated bp.

6 minutes ago, Altostrata said:

@Rhiannon found Mark Horowitz's tweet

October 26, 2019

Hi William

The boss has spoken.

You will be on a much lower dose than previously which will hopefully cause less B.P. problems.

When you see the GP he will probably tell you 5mgs is not a therapeutic dose, if he does he knows nothing about W/D like most doctors.

Let us know what you decide.

October 26, 2019

11 minutes ago, Sassenach said:

Hi William

The boss has spoken.

You will be on a much lower dose than previously which will hopefully cause less B.P. problems.

When you see the GP he will probably tell you 5mgs is not a therapeutic dose, if he does he knows nothing about W/D like most doctors.

Let us know what you decide.

I genuinely don’t know what to do. The BP was just another complicating factor in my case, and it’s not easy to overlook such obvious benefits of stopping.

Seven weeks in, I’d tolerate the psychological symptoms (combo of Parkinson’s and MS), but find this mental anguish utterly debilitating and unbearable.

if I reinstate, how long would you roughly expect any further taper process to take?

In addition to BP increase, there is also risk of return of side effects experienced with amitriptyline (albeit lower dose)

More “complexity”.

Don’t know what to do.

Thanks

October 26, 2019

12 minutes ago, WilliamAtheling said:

if I reinstate, how long would you roughly expect any further taper process to take?

Impossible to predict but currently second consideration to feeling better asap.

13 minutes ago, WilliamAtheling said:

In addition to BP increase, there is also risk of return of side effects experienced with amitriptyline (albeit lower dose)

This why we start at a very low dose so we can monitor you and you can keep a check on your blood pressure.

14 minutes ago, WilliamAtheling said:

Seven weeks in, I’d tolerate the psychological symptoms (combo of Parkinson’s and MS), but find this mental anguish utterly debilitating and unbearable.

I stuck it out for three months but had to reinstate as symptoms got worse not better.

Reinstatement gives you a chance to take back control and as symptoms slowly decrease life gets better but not perfect.

October 26, 2019

1 minute ago, Sassenach said:

Impossible to predict but currently second consideration to feeling better asap.

This why we start at a very low dose so we can monitor you and you can keep a check on your blood pressure.

I stuck it out for three months but had to reinstate as symptoms got worse not better.

Reinstatement gives you a chance to take back control and as symptoms slowly decrease life gets better but not perfect.

Thanks again. Meant tolerate the physiological, not psychological symptoms.

October 26, 2019

Side effects of drugs are generally related to dosage. It's possible you won't have any side effects on 5mg. Please let us know how you're doing.

October 26, 2019

Thank you again. Have scheduled conversation with Doc on Tues. Will let you know after that. This anguish I’m reporting is not brain fog, brain zaps. It’s like a sort of grinding physical pressure feeling that actually makes your brain hurt when you try to think or communicate. (I’d give a million bucks to have brain fog)

October 27, 2019

Have appt Tues so sill report outcome as stated. Just wanted to report on this mental anguish thing. Anger (gone ballistic over some sport results), confusion and sort of neurosis (trying to do meaningless calculations all the time). Wife and son v understanding, but must be nughtmyfor them.

Have to assume the “rewiring” also affects moods as well as devastating impact on nerve function?

WilliamAtheling: Off ADs for first time in thirty years

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