Machi for TK: Reinstate or not low dose Clonazepam

[Machi]

Thank you for adding me. I am so grateful to Alto and others for your dedication.

 

I need your support how to manage sever withdrawals due to long term prescription for my family member TK. I'm a carer. TK can't communicate by himself due to bedridden condition at present. I've got his permission to ask your help here. We wish we could have found SA long before then TK shouldn't have suffered this much. His journey has been so painful and we don't waste our tragedy in vain..

Without knowing SA, we would have taper BZD first not TCA.

TCA could change people's gentle personality into constant atrocious fight/flight mode long term. 

He has been trying to withdraw from prescribed Clonazepam and Clomipramine but they are too addictive and we were clueless how to taper them. There's a huge information gap between English speaking countries and the other countries even though DSM is blindly approved as a norm globally.

The recent condition is in the signature. TK quit smoking in March 19. At present, he has been suffering sever pains almost all over his body and is prescribed Neurotropin. He is so scared to be Chronically ill and I need advice whether or not to reinstate from the people who knows similar symptoms firsthand.

 

We figure out that Central Sensitization has occurred which was triggered by getting several aesthetic injections to treat cavities (in Dec. and Jan.), block injection and facia release injection to alleviate his pains in March. He is in the worst condition physically but neuro-emotions control has been greatly improved. 

Any advice is much appreciated.    

 

Edited May 4, 2019 by Altostrata
deleted text at request of poster

[Altostrata]

Welcome, Machi.

 

Is TK doing better with neurotropin? I don't believe anyone here has taken it, it's not a psychiatric drug.

 

Did TK's pain start when he went off clonazepam? Attention @Shep

[Shep]

Hi, Machi. 

 

Welcome to SA. 

2

Quote

 

2017 Feb. Clonazepam 3mg Clomipramine 50mg
          Apr.  Clonazepam 3mg Escitalopram 10mg
          May  Clonazepam 3mg Paloxetine 25 mg (12.5X2)

          Oct.  Diazepam 60mg    Paloxetine 12.5  Propranolol 10mg 
           followed Ashton manual schedule crossed over from CZP to DZP

2018    Diazepam tapering 10%/ month 
             June 26 Paroxetine switched to Escitalopram 10mg

             Dec 20   Exciatlopram tapering finished  0mg
2019    Feb. 11   Clonazepam tapering/jumped  0mg
             Mar.19   Neurotropin tab 4 n.u. 2-6tablets

 

 

 

I'm confused with your signature. I see where TK sent from clonazepam to diazepam, but when did he go from diazepam back to clonazepam? Did he taper completely off diazepam first or was it a crossover from diazepam back to clonazepam? 

 

[Machi]

Hello Shep, 
I feel honored to talk to you both, Alto and Shep.

Thank you so much for taking your precious time for us.

 

It was a sudden crossover from Diazepam to Clonazepam again on Dec.12, 2018. Diazepam 6mg (dry and 0.1%syllup) has been kept till that day followig rather slower schedule than Ashton protocol.  

 

But due to the double tapering of DZP and Escitalopram, his anxiety and stresses were unmanageable level. On that particular day, I left him alone at home quite a long time due to my work and he couldn't stand unbearable anxiety. He simply couldn't endure his life like this.

Also prior to that reinstatement, his severe difficulty of breathing has exacerbated with DZP since Oct 2017. We can't tell what the real causes of this symptom were, which many not be only physiological.

 

Before 2017, TK has already been trying to quit medications from 2013. This time is the fifth major cessation trial.

So according to him, he's already been suffering from the bad protracted withdrawal syndromes: severe brain zap, headache, neck, shoulder pain, brain fog etc., as you know very well. That's why he dare to do double tapering.

I underestimated the potency of SSRIs. All compounds are horrible to discontinue. I feel blessed to have TK still alive.

His history will be summarized somewhere and the signature will be edited, if I may. Thanks again for reading this.   

With many respects, 
Machi

 

Edited May 6, 2019 by Machi
I pressed a wrong button somewhere before sending the final one. I'm sorry to bother you again.

[Shep]

3 hours ago, Machi said:

Before 2017, TK has already been trying to quit medications from 2013. This time is the fifth major cessation trial.

 

3 hours ago, Machi said:

It was a sudden crossover from Diazepam to Clonazepam again on Dec.12, 2018.

 

Please update your signature to reflect his drug history prior to 2017, as well as adding in the crossover date of Dec 12, 2018 when he went from diazepam to clonazepam. A direct link to your signature is here:

 

Create Your Signature in "Account Settings"

 

3 hours ago, Machi said:

Also prior to that reinstatement, his severe difficulty of breathing has exacerbated with DZP since Oct 2017. We can't tell what the real causes of this symptom were, which many not be only physiological.

 

Does he have a pre-existing breathing condition, such as asthma, or did this breathing problem start after starting these drugs?

 

There is a breathing problem that is seen a lot with benzodiazepines (and other psychiatric drugs) sometimes described as "air hunger" or more scientifically, dyspnea. We have a number of members describe their experience in this thread:

 

Shortness of breath and other breathing issues

 

The below videos are from a hospital site (Hamilton Health Sciences) and what I like about it is the way she explains how to hold your posture so that your shoulders rotate out, expanding the amount of space in your lungs. This will be very helpful if you have another air hunger attack. If you can learn these techniques ahead of time, you'll be able to automatically implement them.  As with anything during withdrawal, first, simply breathe.

 

Managing Shortness of Breath video (5 minutes)

 

Managing an acute episode of shortness of breath video (6 minutes)

 

Please read through these non-drug coping skills, as you may find some things that may help TK:

 

Non-drug techniques to cope with emotional symptoms

 

Non-drug techniques for dealing with body pain

 

We don't recommend a lot of supplements, as many members report their nervous systems are simply too fragile to handle them. However, magnesium and fish oil tend to be calming to the nervous system and many people report they do help. Please only add in one supplement at a time and at a small dose. For more, please see:

 

 King of supplements: Omega-3 fatty acids (fish oil)

 

Magnesium, nature's calcium channel blocker

 

How is he doing with the Neurotropin? Is it helping with pain and / or other symptoms? 

 

Is TK currently taking any supplements? 

[Machi]

On 5/5/2019 at 6:12 AM, Altostrata said:

 

Is TK doing better with neurotropin? I don't believe anyone here has taken it, it's not a psychiatric drug.

 

Did TK's pain start when he went off clonazepam? Attention @Shep

Dear Alto and Shep,

I thought I sent down below but it doesn't seem to be sent. So I wrote again.
****
Thank you so much for your replay even on weekend. I can't appreciate you more. I'm so grateful for the add. Not only the "patients" but also family carers can have huge benefits from this support. 

 

1) Neurotropin(NTP)

On March 16, 2019,  he's got Fibromyalgia diagnosis. Willing or not, he had to choose NTP for his pain because the other treatment drugs were TCAs and SSRI etc, which he's been tapering for these years. Pregabalin was also suggested but we know it's also a too habit-forming drug. He took it only two nights on April 8 & 9, though. Not any more at present.

I'm aware of NTP is not popular in the US. TK says it's not reducing his pain and doesn't count on it much. I feel he can sleep for 2-3 hours after taking NTP. It is prescribed 4 tablets X2 times /day at upper limit dose. His primary doctor said that he couldn't predict the outcome. We'll see at least 1-2 months.

 

TK is not satisfied with FM diagnosis and worries about more serious illness. Because he feels so much deep pain like even inside the bone marrow on the back, legs, arms. Another major ailment is air hunger. The air hunger starts from around Aug. 2017. 

 

2) Flare of pain
His pain problem has been augmented gradually in accordance with the reduction of Clonazepam and Clomipramine/crossed over to Escitalopram in June 8, 2018. His cessation of ECP was in Dec, 2018 and CZP cessation was on Feb. 2019.

The severe pain on the knees stated on Mar.8. after injections for pain management on Mar.19 and 22, the flare of pain on his most parts of the body has started. If he sits on the chair, his buttocks ache. So he seldom sat even on a sofa or walked except coming to have meals or going to the bathroom during April. He managed to go to the dentist until Apr. 12 but stopped going due to his pain.  

Head, abdomen, lung CTs and MRIs, EEG, Xrays, and Holter ECGs showed normal. But his ALT value has been gradually going up since May, 2017.

[Altostrata]

When did TK start having this pain that has been diagnosed as fibromyalgia?

 

This may not be fibromyalgia, it may be a symptom from his drug switches.

 

Is the Valium helping at all?

 

Pregabalin is not any more dangerous than Valium.

[Machi]

On 5/6/2019 at 8:07 PM, Shep said:

Does he have a pre-existing breathing condition, such as asthma, or did this breathing problem start after starting these drugs?

 

There is a breathing problem that is seen a lot with benzodiazepines (and other psychiatric drugs) sometimes described as "air hunger" or more scientifically, dyspnea. We have a number of members describe their experience in this thread:

 

TK didn't have air hunger much before August 2017. From June we tried to Clonazepam liquid taper keeping AD at minimum dose. Since we didn't know much about the proper titration(combination of Dry and liquid), it was too quick and he became sooo sick. Since then, his difficulty of breathing has exacerbated and never gets better yet. 

At age 10, he had  asthma episodes but they weren't serious. In about 2012 he started cigaret smoking. Even though hating smoking himself, he couldn't quit until March 2019.

 

His SpO2  is 93-95. At his late stage of  tapering Lexapro, he had to smoke so much and got SI with heartbeat over 120. Terrible. Now, I'm so happy that at least his heartbeat became normal often in 60s.

 

Shep, Thank you so much for your information about dyspnea. All of them are so helpful. We are so grateful for your guidance. His drug history is long so I need to update again.

[Machi]

On 5/6/2019 at 8:07 PM, Shep said:

 

 King of supplements: Omega-3 fatty acids (fish oil)

 

Magnesium, nature's calcium channel blocker

 

How is he doing with the Neurotropin? Is it helping with pain and / or other symptoms? 

 

Is TK currently taking any supplements? 

 

Thank you so much for your information! We really appreciate it.

 

Neurotropin is unknown. As I wrote before, TK says it's not helping for his pain. But for me, it seems that his sleeping cycle is slowly getting back. With BZD and AD, he simply couldn't keep awake. He had just been sedated with these tablets without thinking too much. And usually just after when he awoke, very negative thoughts begin to bombard his mind. He has bad dream as well. This horrible cycle is so difficult to get out of by oneself.  

Neurotropin seems not to be so sedative. This means that he has to face the stressful reality during the daytime with tons of pain. However his circadian rhythm is gradually coming back these couple of days, which is a good sign. We don't know this is caused by Neurotropin. It must not be so simple. 

 

For supplements, he is taking "EM Powerplus advanced," True Hope brand. Magnasium and Omega-3 are Japanese brand and are taken in the food I prepare.  
 

[Machi]

20 hours ago, Altostrata said:

When did TK start having this pain that has been diagnosed as fibromyalgia?

 

This may not be fibromyalgia, it may be a symptom from his drug switches.

 

Is the Valium helping at all?

 

Pregabalin is not any more dangerous than Valium.

 

The crossover from DIZ 6mg to CLZ 1.5mg was Dec.12. 2018. He's been suffering severe air hunger and severe head and neck ache from 2017.
Jan. 1 CLZ dose was 0.5mg.  Jan. 15  Intraocular pressure: 22.5 and 21.5, easily to have hyperemia

Jan. 16 Tingling in hands and legs increased.  Feb. abdominal stubbing pain increased, right side

Mar. 8  Flu like symptom without fever, sore throat, both knees started aching

Mar.15  pains in both Knees, ankles, buttocks, backs, shoulders, neck, back head, jaw.

               Rheumatism  examination was clear. He's got block injections.

Mar. 16 Fibromyalgia according to the 1990 criteria. As you said, it may not FM. 

Mar. 18 Intraocular pressure: 23 and 22

Mar. 22 Fascia release injections,  so painful 

Mar. 24  Quit smoking
Mar. 25  Even lying on the bed is painful. No comfortable position available. Very poor sleep. 

April. 5   Head MRI normal. Having a panic attack during exam, he lost his confidence in taking exam

Apri. 12  He's completely bedridden for 3 weeks.

May 4.   He could take a walk for 2 hours. Very painful and exhausting.

                  Every one hour, he woke up with nightmares midnight.

 Alto, I can't agree you more. It may not be so called FM but the point is that we needed this diagnosis otherwise we can never stay away from Psychiatry under our National Health Insurance scheme. TK's never been heard "seriously" when he'd begun to explain his symptoms in terms of BZD and AD protracted withdrawal syndromes. TK's pride crushed and doesn't know what to do.

 

We doubt Valium caused more dyspnea for him. He doesn't drink at all and may be a poor metabolizer. Or ClZ has altered gene transcription in many ways? TK says he never feel relaxed as he is always in fight/flight mode 24/7. All muscles are tight and pains are added. 

 

If he could have a safe haven and friends to share this recovery journey together in person, medication may not be needed much.. Is it too idealistic?

[Shep]

On 5/6/2019 at 9:29 AM, Machi said:

The severe pain on the knees stated on Mar.8. after injections for pain management on Mar.19 and 22, the flare of pain on his most parts of the body has started. 

 

The pain started after the injections? Please let us know what medication was injected. 

 

Please add this to your signature:

 

Account - Settings - Create or Update Your Signature

 

The timing of the injections looks to be the same time that he started the Neurotropin, but from what you've written, the Neurotropin is helping with sleep. 

 

Do you think he had an adverse reaction to the injections? 

 

21 hours ago, Machi said:

And usually just after when he awoke, very negative thoughts begin to bombard his mind. He has bad dream as well. This horrible cycle is so difficult to get out of by oneself.  

 

Yes, these are vicious cycles. Is TK able to listen to videos? 

 

You may want to go on YouTube and find some calming meditation videos for him. If you google "guiding meditations for sleep and anxiety", you can find many of them out there.

 

Also, Dr. Claire Weekes has some great podcasts on handling negativity and panic thoughts.

 

Dr. Claire Weekes - How to Recover From Anxiety

 

 

 

 

 

[Altostrata]

Why is TK's intraocular pressure being monitored?

 

To me, the history suggests TK was experiencing adverse effects of DIZ (air hunger, head & neck ache, depression) when crossed over to CLZ Dec. 12, 2018, then experienced withdrawal symptoms from DIZ even while taking CLZ.

 

Excessive sedation and other adverse symptoms while he was on DIZ suggests dosage was too high. Why was he switched to CLZ?

 

His current condition may be DIZ withdrawal symptoms. Or, as he went off escilatopram at the same time, it could be a combination of antidepressant and benzo withdrawal.

 

Very unclear why all the antidepressant switches.

 

I guess if neurotropin helps him sleep, his symptoms may gradually diminish -- sleep is healing.

 

I don't know what to suggest.

 

[Machi]

7 hours ago, Shep said:

 

The pain started after the injections? Please let us know what medication was injected. 

 

The timing of the injections looks to be the same time that he started the Neurotropin, but from what you've written, the Neurotropin is helping with sleep. 

 

Do you think he had an adverse reaction to the injections? 

 

Dear Shep, 

Thank you so much for your time to check my post in detail.

SA staff members are just amazing because I've found so many people in destress and are all waiting for your support. 

My apologies not to make full signature yet. Could you let me have some time to edit all drug history prior to 2017? Today was also a bit stressful afternoon for TK from the pain and a trigger.  

You are right about the comment above. I'm not sure about the adverse reaction of medication but certainly painful experiences triggered Central Sensitized Syndrome, we believe.

The internist we consulted on Mar.19 prescribed Neurotropin and referred TK to the pain clinic of his acquaintance several blocks away. So on the same day, TK got two Neo Vitacain Injection 5ml on his back, buttocks, knees, and etc. (I don't recall well) TK always asks me to be close to him due to his constant anxiety. TK explained his current PWS from CLZ to this doctor, whom we've met for the first time. 
 

When we left this clinic, on the pavement, I saw him staggering from the pain on knees for the very first time in my life... We never paid visit to this pain clinic again.

 

But we visited another clinic to have Fascia release injections on Mar.22. I don't have the name of medicine for this injection. I'm so regretful of TK's having these two injections even we thought they would alleviate his condition. Painful experience as medical treatment provoked actual trauma and more sensitized his vulnerable nervous system.

 

 

 

[Machi]

7 hours ago, Shep said:

You may want to go on YouTube and find some calming meditation videos for him. If you google "guiding meditations for sleep and anxiety", you can find many of them out there.

 

Also, Dr. Claire Weekes has some great podcasts on handling negativity and panic thoughts.

 

Dr. Claire Weekes - How to Recover From Anxiety

 

 

 

 

 

Dear Shep,
I really appreciate your information. Not finishing to watch all, I found Dr. Weekes video is very insightful because TK thinks his anxiety, especially social phobia hasn't resolved yet. And he is overwhelmed by the downfall of physical condition. I wish we could form a small group to watch and read good materials together. I feel I need a suitable intervention, which is not available in our first language yet,  to cut the vicious cycle.. 

[Machi]

32 minutes ago, Altostrata said:

Why is TK's intraocular pressure being monitored?

 

To me, the history suggests TK was experiencing adverse effects of DIZ (air hunger, head & neck ache, depression) when crossed over to CLZ Dec. 12, 2018, then experienced withdrawal symptoms from DIZ even while taking CLZ.

 

Excessive sedation and other adverse symptoms while he was on DIZ suggests dosage was too high. Why was he switched to CLZ?

 

His current condition may be DIZ withdrawal symptoms. Or, as he went off escilatopram at the same time, it could be a combination of antidepressant and benzo withdrawal.

 

Very unclear why all the antidepressant switches.

 

I guess if neurotropin helps him sleep, his symptoms may gradually diminish -- sleep is healing.

 

I don't know what to suggest.

 

 

Dear Alto, 
I am so grateful for your comment while you need to reply to so many members.

Your clarity is a great encouragement for me. Thank you so much!!   

 

I'd like to finalize TK's drug history in the signature and like to ask several questions. 

The reason why we visited ophthalmologist is that he had stubbing pain in the back of his eyes and hyperemia in both eyes. He was scared of cerebral infarction. 

Basically we can't depend on any doctors to confer our situation at present. Our psychiatrist is very understanding and takes any responsibility(according to him)for prescribing. But his expertise is psychotherapy not BZD/AD withdrawal management. He is honest and told us that he didn't know how to handle the medication in this case. It's all up to us. He is old and is living far. This doctor is not a previous prescriber. He is the one we found in 2017 to finalize our recovery journey. 

 

I told TK that you warn not to do the dual tapering but TK already has been suffering from kindling and protracted withdrawal syndrome. He just wanted to escape from the prolonged symptoms. Switching antidepressants are TK's decision in the end because nothing seemed to stabilize his symptoms.

 

We didn't expect sensitization could induce catastrophizing. If someone is bedridden, it causes more serious chronic condition and triggers more depressive mood and anxiety. We did our best but in a silly way.    

Only these tree days, his sleep cycle became better. It isn't flipped anymore.

This is the 12th week of cessation of CLZ. 

 

With gratitudes, 

Machi

[Machi]

On 5/8/2019 at 7:43 PM, Shep said:

 

Please add this to your signature:

Account - Settings - Create or Update Your Signature

 

 

 

 

 

 

 

 

 

Dear Shep,

I'm sorry to bother you.

My signature is too long to fit into the space.

I'd like you and Alto to read at least the very first prescription in detail when you have time, if I may.

Then I will sum them up. Is it alright?

Thank you so much. Machi

 

[planifolia]

On 5/9/2019 at 1:00 PM, Machi said:

If someone is bedridden, it causes more serious chronic condition and triggers more depressive mood and anxiety. We did our best but in a silly way

Would it be possible for TK to move to the living room sofa when he wakes up? I think staying in the same place all day makes the days morph into one which can make depression and hopelessness set in very intensely. 

 

I know of someone who was bedridden but forced himself to dress, shower and put on a watch like he was going to work every morning no matter how bad he felt, and moved himself to the living room sofa until when it was time to sleep. He felt that staying in his pajamas and letting his day and night become one and staying in his room all day was causing him to enter severe depression. I am wondering if TK would benefit from breaking his days up. 

 

I understand that TK is also in a lot of pain and mobility is difficult. Would it possible to get him a wheelchair and you could take him out for a little while around the neighbourhood? I think small things like this helps, just anything to help break up the day. I think sitting and doing nothing and letting the thoughts ruminate is when the withdrawal symptoms have most power. 

[planifolia]

I noticed that it has been a while since a mod have responded. I'll just tag @Shep I think he is the benzo expert here. Hopefully someone can give you some advice soon. I hope TK and you are doing well🤗

[planifolia]

On 5/11/2019 at 10:09 AM, Machi said:

Dear Shep,

I'm sorry to bother you.

My signature is too long to fit into the space.

I'd like you and Alto to read at least the very first prescription in detail when you have time, if I may.

Then I will sum them up. Is it alright?

Thank you so much. Machi

 

That is a very complicated history! I am just curious why there are doctors from so many different countries?

 

I just looked at your signature and noticed that TK's escitalopram was tapered quite quickly (From 10mg, June 2018 - Dec 2018, 6 months) and the clonzapam even quicker (From 1.5mg, Dec 2018- Feb 2019, 3 months). TK's severe body pain can be from the getting off the Clonzapam too quickly. He might also be experiencing tardive symptoms from stopping the escitalopram, as symptoms can suddenly manifest weeks or months after stopping. When I was in the benzo withdrawal community I observed that severe body pain was a common withdrawal symptom, often misdiagnosed as fibromyalgia or athritis. 

 

Sometimes people who cold-turkey or rapid taper can suffer for longer and more severe symptoms than if tapered slowly. I think instatement may be an option for TK. He can reinstate a very small amount and if relief is not felt, slowly increase until he feels stabalized enough, then very slowly taper 5%-10% per month. 

[ChessieCat]

Hi @planifolia and thank you for your concern about TK and trying to assist machi.

 

This is a very complicated situation.  Alto and Shep have a wealth of knowledge between them and are the best mods to assist machi.  They are both following machi's topic so they get notified whenever a post is made.

[planifolia]

Hi Machi it's been a while. I hope there has been some progress with TK  Looking forward to any updates you might have

[Frogie]

On 5/20/2019 at 4:49 AM, planifolia said:

I noticed that it has been a while since a mod have responded. I'll just tag @Shep I think he is the benzo expert here. Hopefully someone can give you some advice soon. I hope TK and you are doing well🤗

Shep is on a leave right now.

 

 

[Machi]

I've got an survey invitation from other site not from SA by an email.
Check  https://tapersafer.org/

 

THE PROTECT STUDY

The Priorities for Future Research on Reducing and Stopping Psychiatric Medicines (PROTECT) study will use a James Lind Alliance Priority Setting Partnership to develop a list of the Top 10 unanswered questions and uncertainties relating to reducing and stopping psychiatric medicines (commonly referred to as 'tapering') .

What I found so grateful and encouraging was that Alto's name was listed in this James Lind Alliance project steering group.
https://tapersafer.org/the-protect-study/the-project-steering-group

I'll spread this information and would like to tell researchers and investigative journalists I know to consider how important to analyze lived experiences in psychiatry, which will save many lives.