Alan1234: desperately seeking help

[benesh]

1 hour ago, Alan1234 said:. I will use this to gauge my long term progress maybe, hopefully I will be well enough to to get out again one day and get out of myself to think of others and take pleasure in planning and thinking about gifts for other people 

 

Yup Alan  I  can soooo relate. Partaking in the festivities is out of the question. When we get invitations for gatherings, I cringe thinking I should go. What on earth is the big deal? But then I recall ideas of self compassion, easy does it, gentle, eventually but not today..and I cut myself some slack for a brief time. I feel for my hubby and sister as they watch me have huge tidal waves. However, I refuse to believe I will not heal. Malarky, hogwash and such. Rooting for you, praying for you and all of us.May we have a sweet window to encourage one another. Until then itty  itty baby steps.

🥰❤️🙏

[Rosetta]

Alan, 

How are you doing?  -Rosetta 

[Alan1234]

19 hours ago, Rosetta said:

Alan, 

How are you doing?  -Rosetta 

Awful 

Extreme anxiety 24hrs a day

i simply don’t know what to do anymore. 
 

My doctor want me to take propranolol. 
luckily I stopped the diazepam, the doctor refused to give me anymore after verbally agreeing to it. He doesn’t know I didn’t take the dose he suggested. Luckily I didn’t.

 

im so scared

 

my anxiety is just physical there must be a cause. 
 

I really don’t know what to do 

[Rosetta]

Alan,

 

I see.  You are likely to be better off if you wait this out. I know that’s cold comfort.  I don’t mean to sound unsympathetic.  In fact, I really feel for you.  However, I know that leaving your system alone is the best option.  It’s so easy for me to say and hard to hear.  Just be aware that most people do not take as long to heal as I have.
 

I’m so sorry your doctor backed out.  However, I’m glad that you had stopped the diazepam.  They can’t be trusted, unfortunately.  They have no idea what they are doing, the majority of them.
 

Your body will heal this.  I know that doesn’t feel as if it’s possible, but it will.  I am proof.   I’m not saying it will not take a long time or that you will not suffer through it.  It’s really difficult to deal with the anxiety this condition causes while it is screaming at you to DO something.  There is nothing you need to do.  That is very hard to believe, I know, but it’s the conundrum of dysautonomia from WD — there is nothing you need to do but exist, and it will slowly, imperceptibly fade away over time.  You will see healing over weeks not days.  

You will look back in two months and realize that you had better moments.  Those better moments will turn into hours, and, eventually, days.  You will have setbacks and bad times, but the overall trajectory will be toward healing.
 

At some point you are going to have a break from the anxiety in the evenings.  You have to plan your day to do anything at that time.  You’ll be tired, but you will be able to function.  Mornings will be rough, and you will have to distract yourself throughout the day.  You will start to be able to read or watch TV.  Going for a walk every day will help you.

 

I’m getting close to being normal.  I did not use a drug to get here.  I tried Benadryl sometimes when I thought I could not endure, but that was risky, and I don’t think it made a much of difference.  It’s taken a long time, and a toll on my life, but my body is starting function normally most of the time.  I have the symptoms of a cold.  For years that didn’t happen.  I don’t know what my immune system was doing, but I didn’t have cold symptoms.  Very odd, this syndrome.

 

Next Christmas wil be so different, Alan.  Hang in there!

 

All my best, Rosetta

[Alan1234]

49 minutes ago, Rosetta said:

Alan,

 

I see.  You are likely to be better off if you wait this out. I know that’s cold comfort.  I don’t mean to sound unsympathetic.  In fact, I really feel for you.  However, I know that leaving your system alone is the best option.  It’s so easy for me to say and hard to hear.  Just be aware that most people do not take as long to heal as I have.
 

I’m so sorry your doctor backed out.  However, I’m glad that you had stopped the diazepam.  They can’t be trusted, unfortunately.  They have no idea what they are doing, the majority of them.
 

Your body will heal this.  I know that doesn’t feel as if it’s possible, but it will.  I am proof.   I’m not saying it will not take a long time or that you will not suffer through it.  It’s really difficult to deal with the anxiety this condition causes while it is screaming at you to DO something.  There is nothing you need to do.  That is very hard to believe, I know, but it’s the conundrum of dysautonomia from WD — there is nothing you need to do but exist, and it will slowly, imperceptibly fade away over time.  You will see healing over weeks not days.  

You will look back in two months and realize that you had better moments.  Those better moments will turn into hours, and, eventually, days.  You will have setbacks and bad times, but the overall trajectory will be toward healing.
 

At some point you are going to have a break from the anxiety in the evenings.  You have to plan your day to do anything at that time.  You’ll be tired, but you will be able to function.  Mornings will be rough, and you will have to distract yourself throughout the day.  You will start to be able to read or watch TV.  Going for a walk every day will help you.

 

I’m getting close to being normal.  I did not use a drug to get here.  I tried Benadryl sometimes when I thought I could not endure, but that was risky, and I don’t think it made a much of difference.  It’s taken a long time, and a toll on my life, but my body is starting function normally most of the time.  I have the symptoms of a cold.  For years that didn’t happen.  I don’t know what my immune system was doing, but I didn’t have cold symptoms.  Very odd, this syndrome.

 

Next Christmas wil be so different, Alan.  Hang in there!

 

All my best, Rosetta

I will try

god bless Rosetta 

thank you for your thoughts today

i hope you and your family have a great Christmas and a happy new year 

[Rosetta]

Thank you.  -Rosetta

[Faure]

Hi Alan, sorry you are still feeling so bad. When I saw your post yesterday I thought the same as Rosetta, that there is nothing pill related you can do, everything I read on here says the same thing, medication changes / additions cause more problems. The only thing that will help is time and stability for your CNS. I know that's not what you want to hear, but if there was a magic solution I feel sure it would have been shared on here and far fewer people would be suffering.

 

Do you know about kindling? I haven't seen it mentioned in your thread as far as I remember. Every time a medication change is made to an already overwhelmed CNS the symptoms are kindled (stired up) and so made even worse.

 

I was reading someone else's thread and magnesium was suggested, also Epsom bath salts.... I've never tried either but perhaps one might bring some relief.... perhaps @Rosettamight weigh in as to whether they are a good idea or not. 

 

Alto also wrote a post about changing the channel. Easier said than done but maybe reading about it other people's experiences might help.

 

I really hope you start getting some relief before too much longer.

 

 

[Ripley]

Hi @Alan1234

 

I'm afraid I don't know how to quote previous messages but on 10th December you mention the various supplements you're taking. You say that you're on 800 iu of vitamin D and some B vitamins and some others. I just wanted to post to say that vitamins D and B can be activating and this can manifest in anxiety and (in my case) insomnia.

 

I recently tried to introduce vitamin D and I'm feeling pretty stable and I was ok with 100 iu but 200 iu gave me insomnia, which has been my main wd problem. I think 800 iu could well be too much for your delicate system? (Before wd, I used to take very high doses of vit D without any problems, 2500 iu)

 

In withdrawal, people can even have difficulty tolerating something like magnesium which is supposed to be calming and need to start with very small doses and see how they go. I believe it can increase anxiety if too much. I had insomnia from a low dose of vitamin B too, I think B6 is the stimulating one but perhaps they all are to a degree. You'll find  threads somewhere on here discussing these various supplements and people's experiences with them.

 

If you make changes, just make one at a time so you know what's affecting you. I don't know how long you've been taking these supplements or if you can remember how they may have affected you when you started? I thought it was worth mentioning these vitamins in case a reduction or trial without them might help you. I do hope your system settles down soon and send you lots of good wishes. 

 

 

[Alan1234]

8 hours ago, Faure said:

Hi Alan, sorry you are still feeling so bad. When I saw your post yesterday I thought the same as Rosetta, that there is nothing pill related you can do, everything I read on here says the same thing, medication changes / additions cause more problems. The only thing that will help is time and stability for your CNS. I know that's not what you want to hear, but if there was a magic solution I feel sure it would have been shared on here and far fewer people would be suffering.

 

Do you know about kindling? I haven't seen it mentioned in your thread as far as I remember. Every time a medication change is made to an already overwhelmed CNS the symptoms are kindled (stired up) and so made even worse.

 

I was reading someone else's thread and magnesium was suggested, also Epsom bath salts.... I've never tried either but perhaps one might bring some relief.... perhaps @Rosettamight weigh in as to whether they are a good idea or not. 

 

Alto also wrote a post about changing the channel. Easier said than done but maybe reading about it other people's experiences might help.

 

I really hope you start getting some relief before too much longer.

 

 

Hi i appreciate your help and reply.

i really don’t want to take another drug believe you me. I’m just really scared. It isn’t any type of anxiety I’ve ever had in my life before. It’s not just a fast heartbeat or stomach or seem mental and not isn’t situational. It’s a constant heart palpitations and left sided chest symptoms. This is what stops me sleeping as all I can describe it as is my heart doesn’t feel normal and it never settles. I don’t want to take drugs but it feels so completely unnatural and now it’s been fairly constant since August/September although it started in June, it feels like it’s not healthy to ignore and it scares me that by ignoring it might not be the right thing. For my first year of withdrawal I had what I would describe as ‘normal’ anxiety and depression, SI even though severe this just feels so different. I really don’t know what to do as it’s not getting better and very disturbing. 
 

im already taking magnesium at nighttime and unfortunately don’t have access to a bath. I’m not saying this for you to feel sorry for me but I don’t even have room for a set of draws or a wardrobe I have carrier bags with my clothes in on the floor of my room that is 7ft by 2.5ft. Obviously living like this and not really having any clothes or things isn’t ideal. Hence these heart palpitations/symptoms/anxiety I wish to try and sort so I could then look to find a room in a shared house or a flat going forward.

 

I hope you and your family are having a great Christmas 

 

god bless 

[Alan1234]

8 hours ago, Ripley said:

Hi @Alan1234

 

I'm afraid I don't know how to quote previous messages but on 10th December you mention the various supplements you're taking. You say that you're on 800 iu of vitamin D and some B vitamins and some others. I just wanted to post to say that vitamins D and B can be activating and this can manifest in anxiety and (in my case) insomnia.

 

I recently tried to introduce vitamin D and I'm feeling pretty stable and I was ok with 100 iu but 200 iu gave me insomnia, which has been my main wd problem. I think 800 iu could well be too much for your delicate system? (Before wd, I used to take very high doses of vit D without any problems, 2500 iu)

 

In withdrawal, people can even have difficulty tolerating something like magnesium which is supposed to be calming and need to start with very small doses and see how they go. I believe it can increase anxiety if too much. I had insomnia from a low dose of vitamin B too, I think B6 is the stimulating one but perhaps they all are to a degree. You'll find  threads somewhere on here discussing these various supplements and people's experiences with them.

 

If you make changes, just make one at a time so you know what's affecting you. I don't know how long you've been taking these supplements or if you can remember how they may have affected you when you started? I thought it was worth mentioning these vitamins in case a reduction or trial without them might help you. I do hope your system settles down soon and send you lots of good wishes. 

 

 

Hi Ripley 

 

thank you for your message. I hope you are having a good holidays.

 

yes I take Vit D dose according to blood test result levels. The recommend daily dose in the UK is 400iu a day, in the USA it’s 600iu. Obviously in withdrawal these levels could be too high. I could try slowly decreasing the daily amount and potentially get levels rechecked when I can afford it. 
 

I’ve been taking Vit D and Vit B for many years way before withdrawal. Obviously I appreciate that my body may process and respond differently now my CNS is where it is at, so it could have developed an intolerance to them. 
 

I think you make a very good point, I feel I should trial reducing the doses, I think that I’ve taken them for far too many years to just stop them at the moment and financially with being unable to work i am not able to afford the same amount of fresh foods or vegetables as I would like so it might not be wise to stop completely. 
 

I think I will trial a immediate 50% dose reduction of Vit D and B.

 

Does this sound reasonable to you do you think ? 

[Ripley]

Hi @Alan1234

 

Yes, I think this sounds reasonable. Perhaps reduce the Bs by 50% for a couple of days and then, assuming no negative effects, add the reduction of the D by 50% and see. If there are any problems, you will know which to change again. 

 

If you feel a little calmer, you can think about further reductions or experiment with doses of other supplements? We do respond differently to these things in wd, I cannot tolerate 10% of the vitamin D I used to. For now, I just take a low dose fish oil and vitamin E - I'm planning to start tapering again in the new year and I don't want anything else to potentially confuse things.

 

Have you tried melatonin? SA recommends about 0.33mg. I didn't find this a silver bullet unfortunately but after taking it a little while (about an hour before bed) I found I was definitely feeling sleepier at bedtime. (My mum thought it was wonderful when she tried it.) I use eurovital liquid melatonin from Biovea I think, I'm also in the UK. Holland and Barrett also do magnesium in spray form, so you can get lower doses if you wanted to and apply directly to the skin. It's a similar idea to magnesium baths, a gentler/lower way to absorb it. 

 

When our systems are so fragile, it seems less is more with most things! I hope you get some improvements soon. 

[Faure]

13 hours ago, Alan1234 said:

It’s a constant heart palpitations and left sided chest symptoms. This is what stops me sleeping as all I can describe it as is my heart doesn’t feel normal and it never settles.

I'm sorry Alan, that sounds really frightening.

[Alan1234]

1 hour ago, Ripley said:

Hi @Alan1234

 

Yes, I think this sounds reasonable. Perhaps reduce the Bs by 50% for a couple of days and then, assuming no negative effects, add the reduction of the D by 50% and see. If there are any problems, you will know which to change again. 

 

If you feel a little calmer, you can think about further reductions or experiment with doses of other supplements? We do respond differently to these things in wd, I cannot tolerate 10% of the vitamin D I used to. For now, I just take a low dose fish oil and vitamin E - I'm planning to start tapering again in the new year and I don't want anything else to potentially confuse things.

 

Have you tried melatonin? SA recommends about 0.33mg. I didn't find this a silver bullet unfortunately but after taking it a little while (about an hour before bed) I found I was definitely feeling sleepier at bedtime. (My mum thought it was wonderful when she tried it.) I use eurovital liquid melatonin from Biovea I think, I'm also in the UK. Holland and Barrett also do magnesium in spray form, so you can get lower doses if you wanted to and apply directly to the skin. It's a similar idea to magnesium baths, a gentler/lower way to absorb it. 

 

When our systems are so fragile, it seems less is more with most things! I hope you get some improvements soon. 

Hi @Ripley

what do you mean by negative side affects by reducing the Vit B ? You mean a worsening of my existing feelings? 
 

yes I’ve tried melotonin it helped when I was much weller earlier in the year March to June. The it has not helped when I’ve tried it since but my whole CNS symtoms  have cranked up severely since then. 
 

the whole thing with SA recommending it for the tiny doses such as 0.33mg of melotonin is very problematic to me. I have it incredibly stressful trying to measure and make these tiny doses as all the different tablets I’ve taken behave so differently and i find it practically impossible to make such small doses. The whole process seems to trigger me even more and make me feel much worse like I’m attached to a ball and chain, I just don’t feel anywhere well enough to do this and it has the opposite affect on my by making me feel disempowered and extremely fearful of every little thing. I have to take a couple of other medications and I take omega 3s and zinc. I’m finding that it’s making me paranoid about everything and when I reduce anything I don’t notice any difference in truth then I feel like I’m trapped and don’t know where to go 

[Ripley]

Hi @alan1234

 

I meant 0.3mg of melatonin not 0.33mg! I'm sorry if this alarmed you. 

 

I don't think you need to worry too much about accuracy with vitamins. I'm sure you can just break tablets in half or use a pin and squeeze out half of the capsule if it's a liquid one.

 

I also don't envisage any negative effects by reducing, quite the opposite, but it's always good to be mindful when making any changes. You may be able to just stop the vitamins (one at a time)? I just thought stepping down a little more gradually might be gentler as I know your system is fragile right now? I know that when I was in the depths of withdrawal I was frightened to change anything! I was too scared to try melatonin for a long time. But I think reducing supplements should be very different to adding or increasing them. I think it will take a few days to feel the changes of the reduction as you will have some stores in your body.

 

We do have to be very accurate with our doses of drugs though as you know. But I believe you're not making changes right now, so as long as you can hold your doses steady try not to worry about that for now. When you feel better you'll be able to tackle that. 

[Ripley]

Hi @Alan1234 

 

How are you doing? 

 

Rx

[Alan1234]

1 hour ago, Ripley said:

Hi @Alan1234 

 

How are you doing? 

 

Rx

Hi @Ripley

im awful I’m afraid, I wake up with burning stabbing pains, cramp in both lower legs every morning. I’m starting to loose the feeling in both feet underneath. It kept me awake all night last night even though I took a sleeping tablet.

 

when I’m walking downstairs I nearly fall because I can’t properly feel the first few steps I think it is.

 

im beginning to think something more than withdrawal is going on to cause this. It’s making me Suicidal 

 

[Rosetta]

Hi Alan, I’m thinking of you, and I understand.  I fell down stairs many times.  The cramps in the calf muscles I’m familiar with, too.  It does feel as if something more is happening, but I assure you that prolonged WD syndrome, PAWS, whatever one calls it, can cause all these symptoms.  
 

The only way out is through, I’m afraid.  It will be worth it.  Keep holding on. -Rosetta

[Ripley]

Hi @Alan1234

 

I'm very sorry you're going through this. It's hard to believe that people are just left to manage such awful symptoms at home. If it was any other illness there'd be help. But help for PAWS so often means more harm. 

 

Treat yourself with the compassion you deserve and keep giving yourself the chance to recover. Your future self will thank you for keeping going and getting through. 

[Alan1234]

1 hour ago, Rosetta said:

Hi Alan, I’m thinking of you, and I understand.  I fell down stairs many times.  The cramps in the calf muscles I’m familiar with, too.  It does feel as if something more is happening, but I assure you that prolonged WD syndrome, PAWS, whatever one calls it, can cause all these symptoms.  
 

The only way out is through, I’m afraid.  It will be worth it.  Keep holding on. -Rosetta

It’s the nerve pains that are bizarre. 
I’ve lost so much Weight and the facial rashes and weakness in one arm.

 

im probably being paranoid but my mother has Parkinson’s.

 

im wondering if the withdrawal could have triggered this in me? The symptoms are so pronounced. It seems strange that they have only started like this 12mths from the original venlafaxine withdrawal 

[Alan1234]

44 minutes ago, Ripley said:

Hi @Alan1234

 

I'm very sorry you're going through this. It's hard to believe that people are just left to manage such awful symptoms at home. If it was any other illness there'd be help. But help for PAWS so often means more harm. 

 

Treat yourself with the compassion you deserve and keep giving yourself the chance to recover. Your future self will thank you for keeping going and getting through. 

Thanks @Ripley

[Rosetta]

It does seem strange, but it is not necessarily an ominous sign.  The symptoms are worrisome as they affect the muscles: tingling, numbness, a sort of buzzing feeling, restless legs, muscle weakness, dropping things, dropping a foot, etc.  I had it all.  I worried about strokes and Parkinson’s, too.  Really, this is very, very much like a stroke.  It’s almost exactly like TBI, traumatic brain injury, which can be caused by a stroke except that it can heal completely or close to completely.  Not all TBI or stroke damage does.

[Alan1234]

38 minutes ago, Rosetta said:

It does seem strange, but it is not necessarily an ominous sign.  The symptoms are worrisome as they affect the muscles: tingling, numbness, a sort of buzzing feeling, restless legs, muscle weakness, dropping things, dropping a foot, etc.  I had it all.  I worried about strokes and Parkinson’s, too.  Really, this is very, very much like a stroke.  It’s almost exactly like TBI, traumatic brain injury, which can be caused by a stroke except that it can heal completely or close to completely.  Not all TBI or stroke damage does.

If it was just the cramps I’m my calf’s how it started back in May/June I would be less concerned. Even the loss of sensation in my feet, I even understand the morning cortisol rushes that are quite extreme. I’m just finding the nerve pains down the backs of both legs quite severe that’s what’s thrown me thinking this could be more. 
I need to have faith and trust in the healing though, even it it is more me worrying about it isn’t going to change it. Just really hard to believe and imagine I would be seemingly getting worse as time gets on rather than better. Obviously I’ve learnt from the site healing isn’t linear, hopefully it might be a good sign and it could be getting worse to get better. My facial rash continues to get worse and I’m itching again. 
 

thank you for listening and giving me support. You really couldn’t believe all this if you hadn’t gone through it yourself. 

[Alan1234]

@Rosetta

@Altostrata

happy new year to you both. 
 

please be patient with me. I know you have tried to help me many times in the past. 

 

i wanted to see if you could give me some advice please. 

 

im currently on Zopliclone only. I’m taking 5.6mg per night. I’m currently getting an average 5hrs sleep per night on it. Which for me is really good.
 

I’ve noticed it’s affects are starting to wear off and it isn’t always getting me sleep. Some nights I don’t get any sleep too. What I have noticed is my anxiety is getting worse especially in the day. It’s more severe and constant. I don’t want to make any hasty changes but I wish to head in the right direction.

 

I’m wondering if the worsening anxiety  could be due to the short half life of Zopliclone, although paradoxically when I didn’t get any sleep it was also bad, but it has gotten worse. 
 

i obviously don’t want to do anything drastic as you know where I’m at. I value the sleep but think the worsening anxiety is telling me something and when I think back to when I started them in October it has definitely got worse. I can’t usually leave the house now where I could manage to get out before.

 

I was thinking to slowly taper from next week down to 4.5mg for 2 wks maybe but because of the half life and anxiety I wanted an expert opinion on if I should introduce diazepam alongside the reduced Zopliclone or do a direct switch? I’ve read on the Ashton method that 2.5mg of diazepam is equivalent to 3.75mg of Zopliclone.

 

Any advice would be greatly appreciated 

[Altostrata]

Yes, it's very possible you are developing tolerance to zopiclone and getting rebound symptoms when it wears off during the day. Do you have any diazepam left?

 

When did you go off vortioxetine, venlafaxine, and propanolol?

[Kelly1066]

I started taking antidepressants in 1990.  The year that Prozac was supposed to revolutionize the treatment of depression.   Well, that never happened.   I took a lot of antidepressants over the past 30 years including ssris, SNRIs, lithium, tricyclic antidepressants, atypical antipsychotics, mood stabilizers, just everything.  I had 8 ECT sessions.  Finally, in August 2021, I decided that my 30 year trial period needed to end.  I've successfully tapered off of trazedone and Prozac.  I am on a small dose of amitriptyline.  I will be ending that this year.  The first several months were horrible.  I felt sick in every way.  A lot of my physical symptoms of withdrawal are a lot better.  I'm pretty depressed, but not more than I was on those medications.  I too worry about my brain's ability to recover.  I have noticed the fog clearing a bit in certain ways and that gives me some hope.  My concentration is a whole lot better.  I am able to enjoy reading again.  I was in graduate school when I was first prescribed antidepressants. I don't think I will return to that level of mental acuity, but I am glad that I finally stopped taking meds that weren't working and had never really worked.  I am also able to retrieve a lot of memories that I haven't accessed for dozens of years.  To me, this is a clue that something good is happening with my CNS.  I haven't felt very good or noticed a big improvement in mood.  I will accept the fits and starts of recovery I am just now noticing.   Good luck to you.  I hope you start to see a few glimmers of hope once you get past the acute phase of your recovery. 

[Alan1234]

8 hours ago, Altostrata said:

Yes, it's very possible you are developing tolerance to zopiclone and getting rebound symptoms when it wears off during the day. Do you have any diazepam left?

 

When did you go off vortioxetine, venlafaxine, and propanolol?

Hi @Altostrata

 

Yes I have 81 tablets of 2mg diazepam.

 

I went off Vortioxetine 12th November.

I went off Venlafaxine 26th November.

 

I went off Propranolol 15th November, I took 14 tablets x 10mg over a 4week period. 
 

Since being off Vor/Ven my mood has reduced again with some SI, however the vertigo, panic attacks, jaw clenching, inner restlessness, Akathisia, sleep myoclonic jerks have all improved significantly with some improvement in urination. 
 

terror and anxiety has generally improved and not as sustained but I have noticed smaller higher waves of the anxiety and fear/impending doom sensations. This usually starts in the mornings from 8am and can last all day or it may become less in the late afternoons and return prior to sleep. Tachycardia has got worse with the anxiety. I always am fearful before sleep, but I much of this is down to the severity and amount of myoclonus and vertigo I was having on the Vortioxetine/Venlafaxine when trying to to sleep. 

[Alan1234]

On 1/2/2022 at 2:32 AM, Kelly1066 said:

I started taking antidepressants in 1990.  The year that Prozac was supposed to revolutionize the treatment of depression.   Well, that never happened.   I took a lot of antidepressants over the past 30 years including ssris, SNRIs, lithium, tricyclic antidepressants, atypical antipsychotics, mood stabilizers, just everything.  I had 8 ECT sessions.  Finally, in August 2021, I decided that my 30 year trial period needed to end.  I've successfully tapered off of trazedone and Prozac.  I am on a small dose of amitriptyline.  I will be ending that this year.  The first several months were horrible.  I felt sick in every way.  A lot of my physical symptoms of withdrawal are a lot better.  I'm pretty depressed, but not more than I was on those medications.  I too worry about my brain's ability to recover.  I have noticed the fog clearing a bit in certain ways and that gives me some hope.  My concentration is a whole lot better.  I am able to enjoy reading again.  I was in graduate school when I was first prescribed antidepressants. I don't think I will return to that level of mental acuity, but I am glad that I finally stopped taking meds that weren't working and had never really worked.  I am also able to retrieve a lot of memories that I haven't accessed for dozens of years.  To me, this is a clue that something good is happening with my CNS.  I haven't felt very good or noticed a big improvement in mood.  I will accept the fits and starts of recovery I am just now noticing.   Good luck to you.  I hope you start to see a few glimmers of hope once you get past the acute phase of your recovery. 

@Kelly1066 thank you so much for your reply. It really does sound like you’ve been through it like me with these medications. 
the strange thing for me is that the longer into ‘withdrawal’ (although) I’ve since learned I’ve done everything in the worse possible way) the worse I seem to get. I mean this in the severity of symptoms in a completely different and new way to pre medication. My anxiety, tachycardic, chest pain and insomnia don’t subside just seem to get worse but I’m sure they can now get any worse now. I cry everyday too and have so much guilt from the past it feels like I can’t believe that was really me although I was happy at the time I’m certainly not now. It’s very surreal it’s like being trapped in a nightmare on your own. 
 

im really glad your noticing improvements and healing that gives me hope that we can heal from these medications l.

 

have a healthy and blessed 2022

[Alan1234]

On 1/2/2022 at 10:46 AM, Alan1234 said:

Hi @Altostrata

 

Yes I have 81 tablets of 2mg diazepam.

 

I went off Vortioxetine 12th November.

I went off Venlafaxine 26th November.

 

I went off Propranolol 15th November, I took 14 tablets x 10mg over a 4week period. 
 

Since being off Vor/Ven my mood has reduced again with some SI, however the vertigo, panic attacks, jaw clenching, inner restlessness, Akathisia, sleep myoclonic jerks have all improved significantly with some improvement in urination. 
 

terror and anxiety has generally improved and not as sustained but I have noticed smaller higher waves of the anxiety and fear/impending doom sensations. This usually starts in the mornings from 8am and can last all day or it may become less in the late afternoons and return prior to sleep. Tachycardia has got worse with the anxiety. I always am fearful before sleep, but I much of this is down to the severity and amount of myoclonus and vertigo I was having on the Vortioxetine/Venlafaxine when trying to to sleep. 

@Altostrata hi

 

i appreciate your really busy and I’m in no rush. I was trying to politely remind you when you get time if you had had any thoughts/advice re the Zopliclone taper and the increased anxiety and if I should cross taper on to diazepam low dose or just continue to taper off Zopliclone?

 

thank you 

[Alan1234]

Hi 

is there any of the moderators that can help me ?

 

I realise that you’ve tried to help in the past, I’m so screwed up and realise there’s not an easy answer. I’m getting horrific anxiety and panic attacks and I am housebound because of it.

 

im getting worse not better although I take this could be a sign of healing.

 

im concerned that what I’m feeling is interdose withdrawal from the Zopliclone because of its short half life.  
 

can someone make a best educated guess to advise me if I should cross taper to diazepam or just continue with a Zopliclone taper. I think it’s causing so many problems I need to consider a faster taper as I’ve only been taking it 3mths and I’ve soon become tolerant to it and having mini withdrawals everyday

 

@Gridley @DataGuy @ChessieCat  

 

can anyone help me. I’m kindled and I know it’s a best guess as to the way forward I just don’t know what to do 

 

please help me 

[DataGuy]

Hi @Alan1234,

 

I have looked over things a bit and I think it would probably be best for you to switch over to diazepam from zopiclone by doing slow, symptom-based cross-taper (slowly reduce the zopiclone as you increase the diazepam). After that I would hold the dose until you feel more stabilized. 

 

I am just in the process of moving and am pretty busy, so I can't promise I will come back to answer reliably, but it might be helpful for you to describe your average day of symptoms, how they have been over time, whether you feel they are improving or getting worse, and any major inflection points you feel are relevant which made things worse/better. What is typically your worst symptom or symptoms and how do these change with stressors? What is your long-term plan and goals with medication? Do you use any supplements?

[Alan1234]

21 hours ago, DataGuy said:

Hi @Alan1234,

 

I have looked over things a bit and I think it would probably be best for you to switch over to diazepam from zopiclone by doing slow, symptom-based cross-taper (slowly reduce the zopiclone as you increase the diazepam). After that I would hold the dose until you feel more stabilized. 

 

I am just in the process of moving and am pretty busy, so I can't promise I will come back to answer reliably, but it might be helpful for you to describe your average day of symptoms, how they have been over time, whether you feel they are improving or getting worse, and any major inflection points you feel are relevant which made things worse/better. What is typically your worst symptom or symptoms and how do these change with stressors? What is your long-term plan and goals with medication? Do you use any supplements?

@dataguy thank you for your reply and advice. Yes I was thinking that it might be wise. I was thinking of dropping to 3.75mg Zopliclone and add in 2mg of diazepam which is allegedly equivalent to 3.75mg Zopliclone. Then I was going to reduce the Zopliclone and then taper the diazepam. I was thinking of provisionally aiming to do this over 4/5wks. I realise this is a lot faster than SA would normally recommend, however I’ve been in the Zopliclone almost 3mths. I don’t think staying son either Zopliclone or Diazepam for a year doing a 10% taper will help me as I’m very poorly anyways and I’m guessing it will be even harder to get off then. 
 

my symptoms are currently I’m virtually housebound other than odd hours where I manage a walk. 
 

prior to Zopliclone I wasn’t sleeping for more than one hour for 3-5 nights. Now I’m getting 5/6hours.

 

I awake every morning with high anxiety rush and pains/cramps/restless legs.
i have frequent urination approx 20x a day. 
 

my main symtoms are chest pains, SA and VT episodes in my heart with panic and high anxiety. The anxiety and panics tend to get worse depending on the the chest pain and heart symptoms. However the anxiety and panic seems to build from 2pm until bed time everyday. That’s why i thought it could be related to the Zopliclone half life from the night before. Basically I’m super sensitive to anything and things like doing basic housework can raise and make the anxiety worse. Obviously I’m doing them when I can or slowly. Any family stress literally the smallest things make the anxiety and chest pain worse. I’m trying to relax and read, meditate or play chess as a distraction when I don’t get the double vision in small doses. 
 

My heart has been cleared by a cardiologist. He says it isn’t bad enough for a surgery and he can’t find a structural cause. He says it must be driven by excess adrenaline. I never had any issues with my heart before withdrawal in my life so I’m hoping it’s just the whole stress on my body and thinking it’s because I’m stuck in fight or flight and that’s why I couldn’t sleep too for the last 18mths. The cardiologist said to try beta blockers which will help my anxiety and help stop the affects on my heart. 
 

Even though I have constant mild chest pains and the palpitation stuff which frighten me i am reluctant to add another drug in that I belief can cause withdrawal too. I was hoping to see if it is the Zopliclone that has made these symptoms worse. Obviously I’m reluctant to go on the beta blockers but first thought I should tackle the Zopliclone and see if I can still get sleep after tapering this. I was hoping even at 2mg maximum the diazepam might help with the daily  anxiety which I can measure by the daily afternoon waves of panic and fear. 
 

im sorry if I’ve rambled on I just wanted to give you as much information so you could best help. 
 

I hope the moving goes well for you and it isn’t stressful and you get settled quickly 

 

thank you 

[DataGuy]

Hi @Alan1234,

 

Your plan sounds like a good one. I would not hesitate to hold the dose until you feel better or just switch entirely to diazepam and hold after that. Also no need to rush off with a fast taper. Remember, if you taper quickly and the symptoms get very intense, it can take a long time for those symptoms to disappear. Best to get as stable as you can and maintain that stability as best you can. Diazepam has a long half life, so it can take as long as a week to feel the full brunt of a dose reduction. 

 

I think you are right on the beta-blocker. Don't want to have to taper that drug too. I tried to look to see if there was any evidence showing beta-blockers for VT worked, but couldn't find any on Cochrane. You may want to ask your doctor for evidence if you are considering taking a BB, namely, is there evidence (in the form of a randomized trial) the drug actually reduces mortality risk for your particular condition. 

 

Do you find exercise helps things? Have you tried any changes in diet at all? 

[Alan1234]

9 hours ago, DataGuy said:

Hi @Alan1234,

 

Your plan sounds like a good one. I would not hesitate to hold the dose until you feel better or just switch entirely to diazepam and hold after that. Also no need to rush off with a fast taper. Remember, if you taper quickly and the symptoms get very intense, it can take a long time for those symptoms to disappear. Best to get as stable as you can and maintain that stability as best you can. Diazepam has a long half life, so it can take as long as a week to feel the full brunt of a dose reduction. 

 

I think you are right on the beta-blocker. Don't want to have to taper that drug too. I tried to look to see if there was any evidence showing beta-blockers for VT worked, but couldn't find any on Cochrane. You may want to ask your doctor for evidence if you are considering taking a BB, namely, is there evidence (in the form of a randomized trial) the drug actually reduces mortality risk for your particular condition. 

 

Do you find exercise helps things? Have you tried any changes in diet at all? 

Thanks @DataGuy how’s the move going?

 

Ive decided it’s pointless trying to hold the Zopliclone dose as it’s clearly giving me interdose withdrawals and that hasn’t changed from 7.5mg to 4.68mg so I’m thinking it’s the half life, I also have very quickly developed tolerance so this also supports my suspicions I think. 
 

I am very concerned about switching to diazepam a benzodiazepine as I’m in an acute protracted withdrawal from multiple CT Anti depressants from 25yrs use but most CT over the last two years before I really found this site then I wasn’t well enough to realise or argue with what they were doing to me. 
 

Tbh data Guy I’m fighting for my life. Along with all the symptoms I mentioned I get SI everyday. I regret starting the Zopliclone but I was only getting sleep every 3-5days prior to it, where as I get 4/6hours when I’m on it.  I really worry about a slow taper off Diazepam as essentially the longer I’m on it the greater the dependence I will have and I’m scared this withdrawal could even kill me. I don’t say this lightly, it’s the reality if you have time to read what I’ve been through. As much as a text book taper from 2mg Diazepam it would take well over 12mths right? I also worry that I  don’t have the mental capacity to be able to consistently make microdose reductions in the diazepam and finally my Doctor won’t give me anymore ot the diazepam so i only have 56 2mg tablets to taper with. I’m not sure if you could advise here?
 

i do really take your point about stability though, I’m very scared which I’m sure you picked up on when you replied to my post.

 

I am barely able to exercise because of the heart symptoms. I can do a moderate walking pace that is all. My heart goes into ST even standing in the shower or washing pots or any static positions stood up. I believe i may have developed a mild POTS type of reaction but I don’t think there’s treatment for this other than the drugs I’ve come off so best not for me to worry about this. Like i say it’s not pleasant symptoms but I can push through to walk. If I start off too quickly or I’m very stressed to begin with my heart quickly jumps into VT which is potentially very dangerous so I have to go super super slowly, but I’m thinking this is better than doing nothing. But I simply can’t exercise to a level to produce endorphins because my heart prevent me from doing that much. All this only started 8mths ago after a delayed protracted withdrawal reaction to CT of 3 different drugs they put me on after my original too fast taper had caused protracted withdrawal that I didn’t know what it was other than the drugs, and Intially multiple reinstatement’s were made too late. 
 

other than being bedridden for 24hrs a day I can’t imagine it possible to be any worse than I am now. Up until June I could exercise but now I’m very limited. So I think with the amount of diazepam tablets I have a 2mth taper might be all I can do to alleviate too fast withdrawal and to prevent too much dependence on it ?

 

Please let me know what you think, obviously not an ideal or simple ever Scernario 

[DataGuy]

Hi @Alan1234,

Thanks for asking. The move is not going well at all lol. I have had a couple places fall through and am getting a bit frustrated with all the time I'm spending looking. Hopefully will find one soon.

Ok. Since you didn't have the VT or the ST prior to the cold turkeys and wd problems, we have to assume they are related to the wd and I'll note that alcohol wd syndrome (similar to benzo wd) is also known to cause this problem. Therefore, if this is the cause, I think it is most important to stabilize things and then do a very slow taper. What did the cardiologist say exactly to clear you? Did he say anything about it being dangerous or limiting exercise? (Not that this should be taken as gospel, doctors are frequently wrong). What was his general advice on exercise, stress etc.? Regardless, important not to push yourself beyond your comfort. 

What doctor is responsible for prescribing the diazepam? The plan should be to switch over and stabilize, then do a slow taper, which yes, could take a long time, but your system needs time to recover, and you should feel much better after stabilizing, assuming the switch works. When did the VT and ST start, exactly?

The doctor has a responsibility to provide enough diazepam for you to stabilize and get off safely. There is some guidance from NICE and the RCPsych on this, I believe. Here is a brief summary from the British National Formulary: https://www.benzo.org.uk/BNF.htm. It is really a matter of good medical practice to do this. If you present them evidence from the BNF along with warnings about the dangers of rapid wd by regulatory agencies (the FDA has one here https://www.fda.gov/drugs/drug-safety-and-availability/fda-requiring-boxed-warning-updated-improve-safe-use-benzodiazepine-drug-class) and they still refuse, they need to be reported to their regulatory body for unsafe medical practice. Most doctors should be willing to provide enough for a safe taper, which will take quite awhile if you are following the guidance of only reducing by 1/10th every few weeks. It also notes to pause if symptoms get too severe. This is the correct method and it is a shame much of the medical profession is unaware.

 

The FDA notes: "Physical dependence can occur when benzodiazepines are taken steadily for several days to weeks, even as prescribed. Stopping them abruptly or reducing the dosage too quickly can result in withdrawal reactions, including seizures, which can be life-threatening." Z-drugs are essentially benzos but with a different chemical structure. It's important that you are polite but firm that these are things they should be familiar with. Many doctors have a lingering insecurity that they are making some sort of mistake and are definitely more apt to go along with your plan if you make it clear that failure to provide sufficient diazepam is a very conspicuous medical error (along with the implication that they will be responsible for any bad outcome, but you don't need to mention that part, they will think of that themselves). 

 

I think you will feel much better once you stabilize on diazepam. It is not 100% guaranteed to work, but if it does, there is no need to worry about a long, slow taper. It should be much more comfortable than your current state. 

Edited January 12, 2022 by DataGuy

[Alan1234]

59 minutes ago, DataGuy said:

Hi @Alan1234,

Thanks for asking. The move is not going well at all lol. I have had a couple places fall through and am getting a bit frustrated with all the time I'm spending looking. Hopefully will find one soon.

Ok. Since you didn't have the VT or the ST prior to the cold turkeys and wd problems, we have to assume they are related to the wd and I'll note that alcohol wd syndrome (similar to benzo wd) is also known to cause this problem. Therefore, if this is the cause, I think it is most important to stabilize things and then do a very slow taper. What did the cardiologist say exactly to clear you? Did he say anything about it being dangerous or limiting exercise? (Not that this should be taken as gospel, doctors are frequently wrong). What was his general advice on exercise, stress etc.? Regardless, important not to push yourself beyond your comfort. 

What doctor is responsible for prescribing the diazepam? The plan should be to switch over and stabilize, then do a slow taper, which yes, could take a long time, but your system needs time to recover, and you should feel much better after stabilizing, assuming the switch works. When did the VT and ST start, exactly?

The doctor has a responsibility to provide enough diazepam for you to stabilize and get off safely. There is some guidance from NICE and the RCPsych on this, I believe. Here is a brief summary from the British National Formulary: https://www.benzo.org.uk/BNF.htm. It is really a matter of good medical practice to do this. If you present them evidence from the BNF along with warnings about the dangers of rapid wd by regulatory agencies (the FDA has one here https://www.fda.gov/drugs/drug-safety-and-availability/fda-requiring-boxed-warning-updated-improve-safe-use-benzodiazepine-drug-class) and they still refuse, they need to be reported to their regulatory body for unsafe medical practice. Most doctors should be willing to provide enough for a safe taper, which will take quite awhile if you are following the guidance of only reducing by 1/10th every few weeks. It also notes to pause if symptoms get too severe. This is the correct method and it is a shame much of the medical profession is unaware.

 

The FDA notes: "Physical dependence can occur when benzodiazepines are taken steadily for several days to weeks, even as prescribed. Stopping them abruptly or reducing the dosage too quickly can result in withdrawal reactions, including seizures, which can be life-threatening." Z-drugs are essentially benzos but with a different chemical structure. It's important that you are polite but firm that these are things they should be familiar with. Many doctors have a lingering insecurity that they are making some sort of mistake and are definitely more apt to go along with your plan if you make it clear that failure to provide sufficient diazepam is a very conspicuous medical error (along with the implication that they will be responsible for any bad outcome, but you don't need to mention that part, they will think of that themselves). 

 

I think you will feel much better once you stabilize on diazepam. It is not 100% guaranteed to work, but if it does, there is no need to worry about a long, slow taper. It should be much more comfortable than your current state. 

Hi @DataGuy

 

sorry to hear moving isn’t going well. 
moving is always stressful never mind being in withdrawal on top of it.

 

yes I agree to stabilise, I’m not quite sure what that is. I haven’t been stable since March 2021 and have gone progressively worse since then. The VT started in June and that has also increased in frequency. They sent me to a cardiologist who specialises in electrophysiology as they were querying if i needed a ablation. 

This cardiologist has said it’s idiopathic VT and ST, meaning no known cause as structural my heart is fine, when usually this is the cause, but he said to me it’s extremely strange to start at my age and the type of VT episodes I have usually show up as a teenager. He said atm the episodes aren’t lasting long enough to warrant surgery which is good I guess. His only other advice was to be referred to an endocrinologist because the other explanation is an adrenal cause possible problems with my adrenal glands. He said this because I have OAB and urinary incontinance too. 
Endocrinologists said they disagree I have any other evidence of adrenal dysfunction so discharged me without testing.  He originally cleared me to exercise, however my exercise capacity is more than 50% reduced and I get symptoms so it’s fairly scary. 
I have since January starting walking everyday within these symptoms for between 30-60mins a day. This is tolerable. I also have a exercise bile which I can manage on the easiest level but my heart rate jumps up quite a lot so I have to barely pedal it. Bear in mind before June I could comfortably jog 5km in 25mins. I could even jog now but I must do something otherwise i will get more deconditioned. 
 

Since the electro cardiologist discharged me in August the episodes have become more frequent. I got in touch with him I’m December and wore a 2wk Ecg. He said the same diagnosis but has now referred me to a chest pain cardiologist to query some type of angina which is strange because he said my heart was structurally sound. He said he can’t do anything for me other than offer beta blockers to dampen the affects of adrenaline on my heart. The chest pains only started in November. I am awaiting to see the This different cardiologist. 
 

my concern are that beta blockers are only going to mask the symptom and then i doubt I will ever get off them and I struggle with insomnia hence the Z drug so I don’t know what to do. 
 

i haven’t taken the beta blockers for more than a handful of doses. My Doctor wants me to take them instead of Diazepam. Maybe these might stabilise me ? I’m just concerned about introducing yet another drug into my system. 
 

with the diazepam would 2mg be a sensible dose to try? Would stability be that my symptoms stop getting worse? I think to stop the pretty extreme anxiety  I get, I would need a decent dose of Diazepam and I’m sure that wouldn’t be recommended. I really have got myself in a mess and don’t know what to dongle the way forward.  
 

my other issue is I don’t have the mental capacity or capability to make consistent daily  microdoses to tablets with buying solvents to make liquids etc 

 

finally this must be some delayed withdrawal reactions causing the heart symptoms, I’ve said this to two of my doctors, two different psychiatrists, countless mental health nurses and not one of them will acknowledge it. I guess that’s because they don’t want to take any responsibility for it? Only my Urologist agreed with me and said it’s the most likely explanation for all my symptoms. 

[DataGuy]

Stabilization = reduction in intensity of symptoms as much as possible, while avoiding taking so much drug that you have an adverse reaction. Replacing the zopiclone with the diazepam at the recommended equivalency rate should help do this, since diazepam has a very long half-life and so should correct the fluctuations in blood levels (and hence your nervous system) you were getting with the zopiclone. Keep in mind it will take about a week of daily use for the full impact of the diazepam to be realized, as it builds up due to the long half life. So best to do a slow crossover from zopiclone to diazepam. 

 

I don't think you need to worry about your mental capacity to taper. Your recall seems very good, your writing shows little sign of cognitive impairment. You don't need to microtaper, although that is an option. You can always make 5-10% cuts every month or so. There are other options as well. If you don't feel comfortable making your own solution, there are compounding pharmacies that will make up doses for you either in pill or liquid form. 

 

Your urologist sounds like the best doctor. I'm not sure we can know that it is adrenaline that is causing the problem and not some other neurotransmitter system. I think it is best to assume it is a combination of protracted wd from antidepressants and wd from the z-drug (which can be pretty severe). I think best to listen to the urologist because the cardiologist should be aware that this can be caused by psychotropic drug wd. Unfortunately, most doctors are pretty ignorant about that.