Alan1234: desperately seeking help

[Faure]

Hi @Alan1234, I have been following your topic and am so sorry to read about how very difficult things are for you and that you’re having such a very bad time right now. Hang in there - it will get better. One breath at a time.
 

I know the temptation to try just something to help but I really don’t believe there is anything except time. Especially as your system is in such upheaval from the mix of drugs you’ve been on. It’s a disgrace that the doctors aren’t better informed and I share your anger about this. I have written but not sent (and won’t send till I’m clear of these drugs in 6 years), a letter to the psychiatrist who prescribed mine. It made me feel better to write it. Maybe when you have a bit of a window it might help to get it off your chest (don’t send it!).

 

At least some (Mark Horowitz in the UK) do know and are doing a lot of work and research to raise awareness. Hang on in there, Faure. 

[Rosetta]

The slightness of the updose is to carefully reinstate part of the 0.25 that you reduced.  I know will not make you well again.  That takes time.  We don’t want you to have an adverse reaction from going directly back to 1.75.  It has been almost a month since you took that dose.

 

I have been sick like you are for months.  It’s extremely hard to endure.  I had the shivers and feeling so cold.  It’s just like street drug addicts experience.    I wish the doctors understood this syndrome.  Very few are aware of the effects of prolonged withdrawal.

 

I’m sorry we can’t give you any way to get immediate relief.  As far as we know, that option does not exist.

 

I promise that you will be glad that you held on and survived.  I am grateful everyday that SA showed me that survival and recovery is possible.  I was very, very close to giving up.  I’m so glad that I stayed now.  At the time I could barely see any reason to stay.

 

R

[Alan1234]

4 hours ago, Faure said:

Hi @Alan1234, I have been following your topic and am so sorry to read about how very difficult things are for you and that you’re having such a very bad time right now. Hang in there - it will get better. One breath at a time.
 

I know the temptation to try just something to help but I really don’t believe there is anything except time. Especially as your system is in such upheaval from the mix of drugs you’ve been on. It’s a disgrace that the doctors aren’t better informed and I share your anger about this. I have written but not sent (and won’t send till I’m clear of these drugs in 6 years), a letter to the psychiatrist who prescribed mine. It made me feel better to write it. Maybe when you have a bit of a window it might help to get it off your chest (don’t send it!).

 

At least some (Mark Horowitz in the UK) do know and are doing a lot of work and research to raise awareness. Hang on in there, Faure. 

Thank you for your kind supporting words 

[Alan1234]

5 hours ago, getofflex said:

@Alan1234I'm really glad to hear this.  This is probably the hardest most painful thing you will ever go through, and it requires huge amounts of patience, and time.  You will get through this.  Just try to take this one day at a time, or even one moment at a time.  Have you tried reading some of the success stories?  Here are 2 really good ones. 

 

Shep Leaving Plato's Cave

 

Tao of the Brass Monkey

I will read them again thank you 

[Altostrata]

On 9/28/2021 at 11:25 AM, Alan1234 said:

just recently as soon as I go to bed I get a few hours of intense full body itching. 

 

Before you change anything, @Alan1234 -- what times o'clock do you take your drugs, what time does the itching start?

 

I see you recently added solifenacin. When did the itching appear? 

 

Does mirtazapine help you sleep? What is your sleep pattern? How has it changed in the last month?

[Alan1234]

2 minutes ago, Altostrata said:

 

Before you change anything, @Alan1234 -- what times o'clock do you take your drugs, what time does the itching start?

 

I see you recently added solifenacin. When did the itching appear? 

 

Does mirtazapine help you sleep? What is your sleep pattern? How has it changed in the last month?

I take mirtazapine an hour before bed at 21:30pm. The itching starts within 20mins of being in bed. Mirtazapine was originally prescribed to me to help with my insomnia that started approx after 6weeks of stopping Venlafaxine. It did originally help me get some nights broken sleep. It certainly helped me drop off to sleep which is my main problem now. It often takes 2/3/4 hrs to drop off. Twice a week or three times on a bad week I can’t sleep at all. The itching has started after taking solfenacin, which I take in the morning. I take this medication because i suffer with my bladder which started while I was on Venlafaxine. Some night I need to use the bathroom 4-6times which when I have fallen to sleep makes things difficult to sleep around. The Solfenacin has reduced this to 2-4 times a night. I have noticed when my anxiety is extremely bad on certain days then this coincides with my bladder problems. 
 

my sleep pattern has been extremely poor only since quitting Venlafaxine in 2020. It has improved mildly/moderately since then in the fact I can get on average 4 nights a week broken sleep now where as last year before mirtazapine and in March after dropping to 3.75mg mirtazapine I was only getting 1/2 nights a week broken sleep when I dropped from exhaustion. 
 

I have tried everything for my sleep pattern and take magnesium and 2mg of melotonin also. I always feel completely exhausted but if I try and sleep when I can in the day time even though I’m so tired I still can’t drop off. 
I go to bed at 10:30pm and listen to meditation music for as long as I need to to feel more relaxed then try and sleep which can then take from another hour to four hours to drop off. 
when I do manage to get sleep I awake with restless legs and mild Akathisia and nerve pains in my legs this usually starts from 7am in the morning making it impossible to go back to sleep even if I feel exhausted 

[Altostrata]

You're not taking anything else in the evening? Did you ever have an allergic reaction to mirtazapine?

 

If not, it appears you may be having an allergic reaction to solifenacin. Always review potential adverse effects before taking a new drug.

 

The way it may work is this: Both solifenacin and mirtazapine have long half-lives. You take solifenacin but there is still plenty in your bloodstream when you take mirtazapine at night. They compete for the same liver enzyme; when mirtazapine is added, it delays metabolism of solifenacin. The backup causes the allergic reaction, which goes away in a couple of hours.

 

https://epha.health/clinic/advice/en/for-drug-solifenacin-mirtazapin/

Quote

Solifenacin has a high oral bioavailability [ F ] of 88%, which is why the maximum plasma level [Cmax] tends to change little during an interaction. The terminal half-life [ t12 ] is rather long at 56.5 hours and constant plasma levels [ Css ] are only reached after more than 226 hours. The protein binding [ Pb ] is 98% strong. The metabolism mainly takes place via CYP3A4.  
Mirtazapine has a mean oral bioavailability [ F ] of 50%, which is why the maximum plasma levels [Cmax] tend to change with an interaction. The terminal half-life [ t12 ] is rather long at 30hours and constant plasma levels [ Css ] are only reached after more than 120 hours. The protein binding [ Pb ] is moderately strong at 85%. which is why, with a mean hepatic extraction rate of 0.34, both liver blood flow [Q] and a change in protein binding [Pb] are relevant. The metabolism takes place via CYP1A2, CYP2D6 and CYP3A4, among others.

 

If I were you, I'd either 1) reduce solifenacin dose a little, less might have same benefit; or 2) ask your doctor for another drug that may not cause the reaction. There are many anticholinergics that would restrict urine output. 

 

Why did you continue to reduce mirtazapine when your sleep started breaking up from prior reductions?

[Alan1234]

10 hours ago, Altostrata said:

You're not taking anything else in the evening? Did you ever have an allergic reaction to mirtazapine?

 

If not, it appears you may be having an allergic reaction to solifenacin. Always review potential adverse effects before taking a new drug.

 

The way it may work is this: Both solifenacin and mirtazapine have long half-lives. You take solifenacin but there is still plenty in your bloodstream when you take mirtazapine at night. They compete for the same liver enzyme; when mirtazapine is added, it delays metabolism of solifenacin. The backup causes the allergic reaction, which goes away in a couple of hours.

 

https://epha.health/clinic/advice/en/for-drug-solifenacin-mirtazapin/

 

If I were you, I'd either 1) reduce solifenacin dose a little, less might have same benefit; or 2) ask your doctor for another drug that may not cause the reaction. There are many anticholinergics that would restrict urine output. 

 

Why did you continue to reduce mirtazapine when your sleep started breaking up from prior reductions?

Yes I’ve already cut the solfenacin dose in half to 5mg as it was giving me alot of double vision. So this hasn’t helped with the itching. The other odd thing I get at night is I get really hot like I’m overheating that also lasts a few hours and keeps me awake like some sort of inflammation. This is strange as since I’ve come off Venlafaxine I’m very sensitive to the temp and especially the cold literally makes me shiver. 
I can’t change over to any other anti cholingenics as I’ve already tried a couple of others and they made me sick within a week. They also tried me in betmiga which now they have stopped due to me having episodes of VT with my heart. It’s funny you mention liver enzymes and metabolism, I have Gilbert’s syndrome and also a non contractile Gail bladder so even my digestion is delayed if many foods never mind drugs. 
 

 

I developed insomnia after coming off Venlafaxine a few months before taking mirtazapine. Mirtazapine helped at 15mg in combination with Zopliclone and diazepam. On its own it only helped me get some sleep one to two nights a week. They then instructed me to up the dose to 30mg and then I developed Akathisia within an hour to two hours of taking it which obviously kept me awake. I then reduced it back down to 15mg and my sleep has been the same ever since.

 

I think sleep is a massive issue into how I’m feeling and my nervous system not being able to recover. The only drugs that do seem to help my sleep are diazepam or Zopliclone but obviously I’m very concerned that if I start taking these drugs on a regular basis then I could end up in a worse mess?

[Altostrata]

It's possible you've developed an allergic reaction to mirtazapine, or in combination with solifenacin. 

 

If this is so, going off mirtazapine would seem to be a good idea. 

 

9 hours ago, Alan1234 said:

I think sleep is a massive issue into how I’m feeling and my nervous system not being able to recover. The only drugs that do seem to help my sleep are diazepam or Zopliclone but obviously I’m very concerned that if I start taking these drugs on a regular basis then I could end up in a worse mess?

 

Given your situation, I would not consider taking the minimum effect dosage of diazepam to be a worse mess. Your prescriber would have to understand you have no desire to continue it and intend to taper off in some months. We can assist you in tapering.

 

I don't know what amount of diazepam would work for you. What worked before?

[Alan1234]

50 minutes ago, Altostrata said:

It's possible you've developed an allergic reaction to mirtazapine, or in combination with solifenacin. 

 

If this is so, going off mirtazapine would seem to be a good idea. 

 

 

Given your situation, I would not consider taking the minimum effect dosage of diazepam to be a worse mess. Your prescriber would have to understand you have no desire to continue it and intend to taper off in some months. We can assist you in tapering.

 

I don't know what amount of diazepam would work for you. What worked before?

I think it was 5mg. I only took it at night time for about 3wks as I thought it might be harder to get off than the anti depressants 

[Altostrata]

Tapering off diazepam is about the same difficulty as any other psychiatric drug.

[Alan1234]

4 minutes ago, Altostrata said:

Tapering off diazepam is about the same difficulty as any other psychiatric drug.

But this is better for my nervous system stability than an anti D type of drug in my situation ? 

[Altostrata]

I wouldn't argue with it if it works.

[Alan1234]

5 minutes ago, Altostrata said:

I wouldn't argue with it if it works.

Ok thank you for your time and help 

[Alan1234]

@Altostrata

i can’t cope with this constant anxiety any longer. I can’t cope with the insomnia of over 16mths. I can’t deal with the pains in my legs and the whole body itching and depression .

 

Unfortunately I’m going to have to try reinstating an AD to get some form of stability then eventually I can hopefully taper correctly off that.  I know you would never recommend drugs on here and this isn’t something I’m saying lightly but I can’t hang in like this any longer. Is there a better AD to reinstate that will be easier to get off for my nervous system on the other side, I know you don’t give advice like this but I can’t trust doctors anymore and have nobody else to ask with your knowledge and experience 

[Rosetta]

I think Alto is suggesting that diazepam would be better than taking mirtazapine if you are having an allergic reaction to mirtazapine.  She’s not suggesting another anti-depressant.  
 

In my opinion, ADs are very likely to cause more harm in this situation — more dysautonomia.  ADs are not anti-anxiety drugs.  They are stimulants, in a way, although they make some people (who are not dealing with a compromised nervous system) feel numb.  For people in withdrawal, they very frequently increase anxiety and cause akathisia.  You have had akathisia.  You know what that feels like.  Some people get aka, and it does not go away when the drug is reduced or discontinued.  That’s what happened to me.

 

When I took Xanax it made me more ill because I took the dose the doctor prescribed.  My system was very sensitive, and a little went a long way.
 

I have no idea why doctors are giving ADs out for anxiety.  There is probably some rigged study that ‘proves’ they work for anxiety.  Honestly, I think doctors do not want to give Xanax or Ativan or diazepam, of course, for good reason, but they don’t want to tell a patient there is no drug option.  So, they give ADs and hope the patient stops complaining.  
 

So, that’s all I will say on the AD issue, Alan.  I don’t want to continue to try to talk you out of taking another AD.  I’ll be here for you, but I’m not going to address that issue again.  I hope you understand.

[Alan1234]

41 minutes ago, Rosetta said:

I think Alto is suggesting that diazepam would be better than taking mirtazapine if you are having an allergic reaction to mirtazapine.  She’s not suggesting another anti-depressant.  
 

In my opinion, ADs are very likely to cause more harm in this situation — more dysautonomia.  ADs are not anti-anxiety drugs.  They are stimulants, in a way, although they make some people (who are not dealing with a compromised nervous system) feel numb.  For people in withdrawal, they very frequently increase anxiety and cause akathisia.  You have had akathisia.  You know what that feels like.  Some people get aka, and it does not go away when the drug is reduced or discontinued.  That’s what happened to me.

 

When I took Xanax it made me more ill because I took the dose the doctor prescribed.  My system was very sensitive, and a little went a long way.
 

I have no idea why doctors are giving ADs out for anxiety.  There is probably some rigged study that ‘proves’ they work for anxiety.  Honestly, I think doctors do not want to give Xanax or Ativan or diazepam, of course, for good reason, but they don’t want to tell a patient there is no drug option.  So, they give ADs and hope the patient stops complaining.  
 

So, that’s all I will say on the AD issue, Alan.  I don’t want to continue to try to talk you out of taking another AD.  I’ll be here for you, but I’m not going to address that issue again.  I hope you understand.

Ok thanks for your thoughts and advice .

the reason I asked about ADs is I know my GP won’t prescribe me Diazepam or similar for more than a few weeks so I was thinking then what for the stability of my system. As I’ve been saying I’m in a such an awful place I just want some form of stability and now I know whatever drugs I take it’s going to take a long taper to get off them. So I’m having a reaction to the mirt or maybe this is just another of my withdrawal symptoms I was just thinking i need something to somehow help give my nervous system a chance to settle but a few weeks of diazepam might not be the best either and for some reason Doctors think diazepam is a lot more harmful than the AD 

[Altostrata]

I agree with Rosetta. 

 

If your primary problem is sleep, diazepam would be better. Since you have multiple health problems, your GP might make an exception. You will need a prescription for some months.

[Alan1234]

12 minutes ago, Altostrata said:

I agree with Rosetta. 

 

If your primary problem is sleep, diazepam would be better. Since you have multiple health problems, your GP might make an exception. You will need a prescription for some months.

It’s difficult to know what my primary problem is but I do know that not sleeping seems to be affecting and making everything else worse. The physical symptoms of anxiety is the worse problem that is stopping me sleeping it’s like my body can’t get out of being on hyper alert 

[Altostrata]

Yes, that sensation is typical of withdrawal syndrome, as is withdrawal insomnia. 

 

If you found diazepam helpful, you might consider it. It is not an unusual treatment for withdrawal symptoms.

[Alan1234]

2 minutes ago, Altostrata said:

Yes, that sensation is typical of withdrawal syndrome, as is withdrawal insomnia. 

 

If you found diazepam helpful, you might consider it. It is not an unusual treatment for withdrawal symptoms.

Somehow I need to convince my GP to prescribe it for the medium term. I’ve mentioned withdrawal to him and the psychiatrists and they either look at me like I’m insane or don’t acknowledge or respond to me. Would I be right I’m thinking diazepam has a long half life so I could just try and take it once per day at night ?

[Alan1234]

1 hour ago, Rosetta said:

I think Alto is suggesting that diazepam would be better than taking mirtazapine if you are having an allergic reaction to mirtazapine.  She’s not suggesting another anti-depressant.  
 

In my opinion, ADs are very likely to cause more harm in this situation — more dysautonomia.  ADs are not anti-anxiety drugs.  They are stimulants, in a way, although they make some people (who are not dealing with a compromised nervous system) feel numb.  For people in withdrawal, they very frequently increase anxiety and cause akathisia.  You have had akathisia.  You know what that feels like.  Some people get aka, and it does not go away when the drug is reduced or discontinued.  That’s what happened to me.

 

When I took Xanax it made me more ill because I took the dose the doctor prescribed.  My system was very sensitive, and a little went a long way.
 

I have no idea why doctors are giving ADs out for anxiety.  There is probably some rigged study that ‘proves’ they work for anxiety.  Honestly, I think doctors do not want to give Xanax or Ativan or diazepam, of course, for good reason, but they don’t want to tell a patient there is no drug option.  So, they give ADs and hope the patient stops complaining.  
 

So, that’s all I will say on the AD issue, Alan.  I don’t want to continue to try to talk you out of taking another AD.  I’ll be here for you, but I’m not going to address that issue again.  I hope you understand.

 

5 minutes ago, Altostrata said:

Yes, that sensation is typical of withdrawal syndrome, as is withdrawal insomnia. 

 

If you found diazepam helpful, you might consider it. It is not an unusual treatment for withdrawal symptoms.

 

Just now, Alan1234 said:

Somehow I need to convince my GP to prescribe it for the medium term. I’ve mentioned withdrawal to him and the psychiatrists and they either look at me like I’m insane or don’t acknowledge or respond to me. Would I be right I’m thinking diazepam has a long half life so I could just try and take it once per day at night ?

and is it a safer/better drug than Zopliclone in my situation?

[Altostrata]

2 minutes ago, Alan1234 said:

and is it a safer/better drug than Zopliclone in my situation?

 

Did you find zopiclone effective?

[Alan1234]

Just now, Altostrata said:

 

Did you find zopiclone effective?

Yes it helps they both have with sleep, obviously don’t change the day time anxiety nothing seems to touch that 

[Alan1234]

Just now, Alan1234 said:

Yes it helps they both have with sleep, obviously don’t change the day time anxiety nothing seems to touch that 

 I suppose it’s all a lottery, I could even make my sleep worse I suppose. The mirtazapine was originally prescribed for this purpose and I think that it has compounded the problem 

[Altostrata]

Neither is "safer" than the other, if you take either of them more than a couple of weeks, it's likely you'll have to taper off. 

 

Diazepam has a much longer half-life than zopiclone and is more likely to help daytime anxiety.

[Alan1234]

Just now, Altostrata said:

Neither is "safer" than the other, if you take either of them more than a couple of weeks, it's likely you'll have to taper off. 

 

Diazepam has a much longer half-life than zopiclone and is more likely to help daytime anxiety.

Ok I guess I need to try and have a open conversation with my Doctor about it. They get audited by the government in the UK to schedule 3 drugs that they prescribe. My worst fear is they will prescribe for 1/2 mths then abruptly withdraw it 

[Altostrata]

That's probably true for zopiclone, as well. It's a benzo-like drug.

 

With diazepam, if your doctor prescribes 10mg tablets, you might be able to get by with splitting the tablet, which may make a month's prescription last longer. But you should get him to agree to an extended prescription, to allow your nervous system to settle down and allow a gradual taper off.

[Alan1234]

Just now, Altostrata said:

That's probably true for zopiclone, as well. It's a benzo-like drug.

 

With diazepam, if your doctor prescribes 10mg tablets, you might be able to get by with splitting the tablet, which may make a month's prescription last longer. But you should get him to agree to an extended prescription, to allow your nervous system to settle down and allow a gradual taper off.

Ok can I just stop the mirtazapine as it’s 1.75mg and it’s causing me the itching ?

[Altostrata]

Once you're taking diazepam, yes, I would stop the mirtazapine.

[Alan1234]

1 minute ago, Alan1234 said:

Ok can I just stop the mirtazapine as it’s 1.75mg and it’s causing me the itching ?

Ok thank you for your help 

[Rosetta]

If the doctor prescribes diazepam, you might get 2-4 weeks of prescription at much higher dose than you need.  You can use a water dissolution to get your tiny dose.  You don’t want to knock yourself out.  You want to reduce the overstimulation so that you can rest even if you don’t get 6 hours of sleep.  If you fall right to sleep, it’s likely too much.  
 

Then, you will have extra for tapering — on your own.  If the doctor knows you have done it this way, you might have a problem!  It’s important to protect ourselves from their ignorance.  They SHOULD know you are suffering from prolonged withdrawal and be willing to treat it.   They have known since 2009. https://www.survivingantidepressants.org/topic/2448-nice-antidepressant-discontinuation-guidelines-for-uk-doctors/. Looking at you as if you are nuts and denying you are in prolonged withdrawal is their failure.  You do not have to allow them to hurt you.

 

As Alto said, diazepam is a known treatment for prolonged  withdrawal.  

 

Yes, there’s worry about the doctor continuing to prescribe for your taper.  Will the doctor accept that you need to taper?  Will he try to give you only a few weeks worth and then CT because he doesn’t think you have been on long enough to be dependent? Maybe.  All the more reason to use as little as possible.  
 

The solution keeps for several days in the refrigerator.  I wish I had known to do this instead of taking the dose I was prescribed.

 

 

[Faure]

Alan, looks like you are getting some helpful advice here, I wish you all the best with your doctor. I think it’s worth printing out the Royal College Pharmacists leaflet about WD to give to him / her. Do you have access to a printer? 

[Alan1234]

2 minutes ago, Faure said:

Alan, looks like you are getting some helpful advice here, I wish you all the best with your doctor. I think it’s worth printing out the Royal College Pharmacists leaflet about WD to give to him / her. Do you have access to a printer? 

I have access to a printer but I won’t be able to get a face to face appointment with my doctor. They stopped doing them due to Covid and have conveniently not started them back up now the rest of the world is back to normal 

[Alan1234]

8 hours ago, Rosetta said:

If the doctor prescribes diazepam, you might get 2-4 weeks of prescription at much higher dose than you need.  You can use a water dissolution to get your tiny dose.  You don’t want to knock yourself out.  You want to reduce the overstimulation so that you can rest even if you don’t get 6 hours of sleep.  If you fall right to sleep, it’s likely too much.  
 

Then, you will have extra for tapering — on your own.  If the doctor knows you have done it this way, you might have a problem!  It’s important to protect ourselves from their ignorance.  They SHOULD know you are suffering from prolonged withdrawal and be willing to treat it.   They have known since 2009. https://www.survivingantidepressants.org/topic/2448-nice-antidepressant-discontinuation-guidelines-for-uk-doctors/. Looking at you as if you are nuts and denying you are in prolonged withdrawal is their failure.  You do not have to allow them to hurt you.

 

As Alto said, diazepam is a known treatment for prolonged  withdrawal.  

 

Yes, there’s worry about the doctor continuing to prescribe for your taper.  Will the doctor accept that you need to taper?  Will he try to give you only a few weeks worth and then CT because he doesn’t think you have been on long enough to be dependent? Maybe.  All the more reason to use as little as possible.  
 

The solution keeps for several days in the refrigerator.  I wish I had known to do this instead of taking the dose I was prescribed.

 

 

Does anyone know anything about the AD Agomelatine. I’ve read that he helps to rest circadian rhythms and it has the lowest risk of withdrawal in the link that faure posted from the royal college of psychiatrists.

I note both the anti depressants I’ve spent most of my life on paroxetine and Venlafaxine are associated with the highest amount of withdrawal. Due to the half life Of Venlafaxine would protracted withdrawal not happen much more quickly than the 4wks it took before it completely blindsided me? 

[Faure]

2 hours ago, Alan1234 said:

I have access to a printer but I won’t be able to get a face to face appointment with my doctor. They stopped doing them due to Covid and have conveniently not started them back up now the rest of the world is back to normal 

Yes, this is really annoying isn’t it. I wonder if you could email it for the attention of your doctor. Or sometimes my GP Googles things I mention during our conversation, at least he did before he left.