Alan1234: desperately seeking help

[Shebon]

Hi Alan:

 

Very sorry to hear about the therapy situation.  Did your wife go to some of the sessions with you?  Your daughter may need more time to understand the benefits of family counseling.  

 

How did your doc come to the conclusion that you have hypoparathyroidism?  Did you have some tests?  I think an Endo doc is the best person to see regarding this.  

 

Also, I just discovered that I am addicted to my multi vitamin.  I have been having withdrawals from running out of my multi and tried two different ones.  Last night, I had the flighty mind and couldn't fall asleep no matter what.  I guess this can happen as several articles said not to stop taking multivitamins cold turkey.  Which is what I did, and the last 11 days have been hit or miss in sleeping.  All this can contribute to is it mirt withdrawals or what?  I want to taper off one thing at a time, so I will continue with the multi and start tapering mirt in August.  

 

I have subclinical hypothyroidism....and the protocol can be not to take medication until the TSH goes over 10.  But so many reviews of Synthroid prove it to be problematic with sleep, weight, headaches, and digestive issues.  I am now 3 1/2 months off and will continue to stay off the med.  

 

How much sleep are you getting nitely?  I hope enough to function for the day...are you working now?  

 

Best regards,

Shebon

[Onmyway]

On 6/18/2021 at 6:20 PM, Rosetta said:

I think you can mix water with liquid medicine to make it easier to get an accurate dose.  Of course, never let water get into the vial of medicine.  @Gridley
 

I haven’t done this myself, but my understanding is that you would buy a 10 ml medicine syringe for small animals.  Get a small container with a tight fitting lid such as little, jam jar.  

 

Here’s the thread on using liquid medicine for tiny doses.
 

https://www.survivingantidepressants.org/topic/235-using-an-oral-syringe-and-other-tapering-techniques/page/2/

 

There might be an easier way, but just to get you started, I would do this —

 

Use the syringe that came with the bottle to pull out 3 ml from the medicine vial.  Push that medicine into the small container.  Pour water into a bowl, and, using the new syringe, pull out 6 ml of water.  Push the 6 ml into the small container.  Mix the solution well.  You will have 9 ml of mixture.  Each 3 ml will have one milliliter of medicine. Then, with the new syringe, pull out 3 ml of the mixture, and take it.

 

 

Put the jar in the refrigerator.  It might be necessary to swish the liquid in the jar around to mix it well right before each time you take a dose.  I’m not sure.  
 

I suppose you could make up 6 days worth of mixture at a time with 12 ml of water and 6 ml of medicine.  It’s an inconvenient number, but making 7 days worth would be difficult.  The mixture should last a week, I believe.  At least it does when pills are dissolved in water.  

Hi Alan, 

I am really late to this, sorry. Rosetta has been providing some amazing support. What a horrible time with the heart issues - GPs are notorious in the UK for misdiagnosing/underdiagnosing and blaming everything to anxiety. I have had multiple fights with mine over this issue. And it's so unfortunate with the wait times due to Covid! 

 

*** I just noticed that the proposed 1ml mirt of the liquid in Rosetta's post would be equal to 15 mg of the dry drug. Is this what you have been taking after you left the hospital (sorry haven't read further as noticed this and wanted to respond quickly). I made mistakes with my calculations in the very beginning which set me back quite a bit. Please make sure you get this right.

 

*** Also important - read the leaflet of the medicine carefully. I used citalopram and it turned out that the liquid citalopram is 1ml=40mg BUT the bioavailability/potency of it is different so 32mg of liquid=40 mg dry (says so on the leaflet). I did not notice this for a long time and when I did it was too late so I tapered from the higher dose. I don't see anything like that myself from the leaflet for mirtazapine but can someone else please check as well? 

Mirtazapine 15mg/ml Oral Solution - Patient Information Leaflet (PIL) - (emc) (medicines.org.uk)

 

Since then I have started requesting a very specific generic for the sake of consistency so if you can get that, do so - ask at the pharmacy when you drop your prescription that you want the specific producer. 

 

Regarding liquid preparation, I dilute in a jar and measure the right proportion from there. When I travel I make one dose preparations in those tiny honey jars from hotels and pre-measure them. You might try that for the hospital. However, seems like mirt may interfere with the heart medicines and cause heart side effects so the doctors should probably know about it. Though they do seem to be dismissing it at that dose so I don't think it would change their decision making if you told them. 

 

[Alan1234]

3 hours ago, Onmyway said:

Hi Alan, 

I am really late to this, sorry. Rosetta has been providing some amazing support. What a horrible time with the heart issues - GPs are notorious in the UK for misdiagnosing/underdiagnosing and blaming everything to anxiety. I have had multiple fights with mine over this issue. And it's so unfortunate with the wait times due to Covid! 

 

*** I just noticed that the proposed 1ml mirt of the liquid in Rosetta's post would be equal to 15 mg of the dry drug. Is this what you have been taking after you left the hospital (sorry haven't read further as noticed this and wanted to respond quickly). I made mistakes with my calculations in the very beginning which set me back quite a bit. Please make sure you get this right.

 

*** Also important - read the leaflet of the medicine carefully. I used citalopram and it turned out that the liquid citalopram is 1ml=40mg BUT the bioavailability/potency of it is different so 32mg of liquid=40 mg dry (says so on the leaflet). I did not notice this for a long time and when I did it was too late so I tapered from the higher dose. I don't see anything like that myself from the leaflet for mirtazapine but can someone else please check as well? 

Mirtazapine 15mg/ml Oral Solution - Patient Information Leaflet (PIL) - (emc) (medicines.org.uk)

 

Since then I have started requesting a very specific generic for the sake of consistency so if you can get that, do so - ask at the pharmacy when you drop your prescription that you want the specific producer. 

 

Regarding liquid preparation, I dilute in a jar and measure the right proportion from there. When I travel I make one dose preparations in those tiny honey jars from hotels and pre-measure them. You might try that for the hospital. However, seems like mirt may interfere with the heart medicines and cause heart side effects so the doctors should probably know about it. Though they do seem to be dismissing it at that dose so I don't think it would change their decision making if you told them. 

 

Hi Onmyway

thanks for your reply 

 

ive been taking 1.75mg of mirtazapine.

ive been using the standard liquid my GP prescribed 15mg/1ml. I’ve managed to make my own syringe with an insulin barrel whose volume is 0.5ml to hen i take it to 10iu on it. I think that’s about right.

 

thanks

Alan 

[Onmyway]

4 minutes ago, Alan1234 said:

Hi Onmyway

thanks for your reply 

 

ive been taking 1.75mg of mirtazapine.

ive been using the standard liquid my GP prescribed 15mg/1ml. I’ve managed to make my own syringe with an insulin barrel whose volume is 0.5ml to hen i take it to 10iu on it. I think that’s about right.

 

thanks

Alan 

 

Hi Alan, 

What do you mean by IU? Do you mean insulin syringe units? In that case 10 units seem to be 0.1 ml so 10 units would be equal to 1.5 mg not 1.75. That means that one draw would last you 5 days. Is that correct? Since small changes matter a lot at the low end, it's important to be precise here esp as you are making the next cut and if you need to change syringes, dilution methods etc.

 

Do you also first draw into a 0.5 ml syringe and then into a different insulin syringe? My citalopram is quite viscous so some of it might be lost if you are using multiple syringes. I wash the syringe into my diluted water + citalopram solution. Again the smaller the doses get the more this will matter. 

 

How are you feeling on it?

 

OMW

 

[Onmyway]

On 7/21/2021 at 1:00 PM, Alan1234 said:

No she’s just turned seventeen. I love her but she says the the most hurtful things when I try to speak to her. She says nobody wants me and I’m like a dark cloud that no one wants to be near. It just reduces me to tears when she says these things to me. I just don’t understand how it’s come to this point in my life. I’m not sure if I need to just pretend they don’t exist. I just can’t process it all and it just keeps making me cry everyday. 
 

i feel so lonely, I don’t have anyone and don’t know what the point of my life is anymore. I feel like it’s a nightmare I’ve awoken from. I was taking the anti depressants for so many years and now I’ve come off them I’m left with nothing. Everything I worked for and lived for my family is gone 

Hi Alan

 

I wonder if what your daughter needs from you right now is stronger limits - i.e. not to let her be mean to you. I'm no psychologist but as was raised by someone depressed and at times just wanted to be told off, to feel that someone else could handle my power. 

 

Again, it's just an opinion here. You have to remember that relationships go through all kinds of stages and this will change as you get through period and she grows up. Try not to think of it as irreversible. You will make it better when you are better yourself. Just focus on that right now. 

[Alan1234]

On 7/23/2021 at 11:08 PM, Shebon said:

Hi Alan:

 

Very sorry to hear about the therapy situation.  Did your wife go to some of the sessions with you?  Your daughter may need more time to understand the benefits of family counseling.  

 

How did your doc come to the conclusion that you have hypoparathyroidism?  Did you have some tests?  I think an Endo doc is the best person to see regarding this.  

 

Also, I just discovered that I am addicted to my multi vitamin.  I have been having withdrawals from running out of my multi and tried two different ones.  Last night, I had the flighty mind and couldn't fall asleep no matter what.  I guess this can happen as several articles said not to stop taking multivitamins cold turkey.  Which is what I did, and the last 11 days have been hit or miss in sleeping.  All this can contribute to is it mirt withdrawals or what?  I want to taper off one thing at a time, so I will continue with the multi and start tapering mirt in August.  

 

I have subclinical hypothyroidism....and the protocol can be not to take medication until the TSH goes over 10.  But so many reviews of Synthroid prove it to be problematic with sleep, weight, headaches, and digestive issues.  I am now 3 1/2 months off and will continue to stay off the med.  

 

How much sleep are you getting nitely?  I hope enough to function for the day...are you working now?  

 

Best regards,

Shebon

Hi Shebon

 

no my wife couldn’t make the therapy session, although she does seem to be coming around to being open about coming again in the future so I will keep that hope. 

My Doc came to the conclusion because  he asked for a parathyroid blood test and it came back ridiculously low. I suggested to him might it not be an erroneous blood test and to recheck it but he says not. I also did some of my own research as I’ve being taking 5000iu of Vitamin D. From what I’ve read In the research I’m thinking that it’s a self regulating system and maybe the parathyroid has dropped in a response to high Vit D to protect against high calcium in the system, as usually a low parathyroid would be associated with low Vit D and high Phosphorus. Mine is the other way round, high calcium and low phosphorus. When I suggested this to my GP it was clear he didn’t know anything about this. 
 

yes I will wait to see an Endocrinologist but it will take a few months to wait in the UK atm because of Covid. I’ve had so many high or low blood tests results since being in WIthdrawal it’s insane. The frustration is that the Doctors just keep shifting there shoulders saying they don’t know what the cause is or that it’s ok even though it’s very high or low it’s ok and nothing to worry about so their ranges seem to mean nothing and they never recheck the bloods that were high or low again. I’m going to make a list of all the high and low ones and take it to the endocrinologist when I get to see them. 
 

if I was you I would be very careful not taking your thyroid medication although I understand why you don’t want to take it. 
 

im getting say 2hours light sleep then say another 2/3 hours of light sleep. I have polyuria so the most time I can manage is 3hrs even if I do get in a good sleep before I have to get up.

 

im hoping to go back to work again on Weds 

 

thanks

 

Alan 

[Alan1234]

1 hour ago, Onmyway said:

Hi Alan

 

I wonder if what your daughter needs from you right now is stronger limits - i.e. not to let her be mean to you. I'm no psychologist but as was raised by someone depressed and at times just wanted to be told off, to feel that someone else could handle my power. 

 

Again, it's just an opinion here. You have to remember that relationships go through all kinds of stages and this will change as you get through period and she grows up. Try not to think of it as irreversible. You will make it better when you are better yourself. Just focus on that right now. 

Hi Onmyway

 

no she definitely wouldn’t respond to stronger limits. In fact the problem is the opposite their really is no limits and if I try to establish any it makes the whole situation even worse. She becomes very volatile and even sometimes physically violent towards me. Her volatility then causes my wife to get very stressed and anxious so then I have to leave if I was at the house for example.

 

thanks

Alan 

[Alan1234]

1 hour ago, Onmyway said:

 

Hi Alan, 

What do you mean by IU? Do you mean insulin syringe units? In that case 10 units seem to be 0.1 ml so 10 units would be equal to 1.5 mg not 1.75. That means that one draw would last you 5 days. Is that correct? Since small changes matter a lot at the low end, it's important to be precise here esp as you are making the next cut and if you need to change syringes, dilution methods etc.

 

Do you also first draw into a 0.5 ml syringe and then into a different insulin syringe? My citalopram is quite viscous so some of it might be lost if you are using multiple syringes. I wash the syringe into my diluted water + citalopram solution. Again the smaller the doses get the more this will matter. 

 

How are you feeling on it?

 

OMW

 

Hey

yes international units on an insulin syringe. No I draw straight into the insulin syringe on a daily basis.

 

I don’t feel great because I’m in withdrawal. I’m exhausted all the time, I can’t sleep and I have a few health issues going on. But I do know if I don’t have it I feel mentally a lot worse in terms of anxiety and depression. I missed 5 doses when they kept me in hospital with my heart. 
 

thanks

Alan 

[Onmyway]

1 hour ago, Alan1234 said:

Hi Onmyway

thanks for your reply 

 

ive been taking 1.75mg of mirtazapine.

ive been using the standard liquid my GP prescribed 15mg/1ml. I’ve managed to make my own syringe with an insulin barrel whose volume is 0.5ml to hen i take it to 10iu on it. I think that’s about right.

 

thanks

Alan 

Hi Alan,

I'm more confused about this dosage thing. 10 IU would be 0.1 ml but you mention that this syringe is 0.5 ml (50 IU), do you only take 1/5 th of the syringe?

 

Can you please clarify this? I'm worried that something may not be right in your dosing.

 

OMW

[Alan1234]

1 minute ago, Onmyway said:

Hi Alan,

I'm more confused about this dosage thing. 10 IU would be 0.1 ml but you mention that this syringe is 0.5 ml (50 IU), do you only take 1/5 th of the syringe?

 

Can you please clarify this? I'm worried that something may not be right in your dosing.

 

OMW

Hi Onmyway

 

yes I take 10iu which is 0.1ml as it’s a 0.5ml syringe. 
 

thanks 

Alan 

[manymoretodays]

@Alan1234@Shebon merged your discussions/support specific to Alan1234 here, from DD44's Introduction topic.  You'll find those posts now in chronological order here.

And best Alan1234, sounds like you've been through the wringer, so to speak.  Sending a huge window of healing and stability.  And hugs.  💜

[Onmyway]

7 hours ago, Alan1234 said:

Hi Onmyway

 

yes I take 10iu which is 0.1ml as it’s a 0.5ml syringe. 
 

thanks 

Alan 

Ok, good we straightened that out. Since that looks like 1.5mg of mirtazapine, can you please update your signature as well? It's good to keep these things straight for later when you make changes. 

OMW

[Onmyway]

8 hours ago, Alan1234 said:

Hi Onmyway

 

no she definitely wouldn’t respond to stronger limits. In fact the problem is the opposite their really is no limits and if I try to establish any it makes the whole situation even worse. She becomes very volatile and even sometimes physically violent towards me. Her volatility then causes my wife to get very stressed and anxious so then I have to leave if I was at the house for example.

 

thanks

Alan 

 

I still think that well enforced stronger limits might do the trick. She needs to know that you and your wife can handle her volatility and violence. She herself needs to know that she is not all powerful with respect to you. 

 

If she is not physically dangerous, I would just resist her physical outbursts calmly like you would with a 5 year old throwing a tantrum. I am not sure if you or your wife are up to it but in the long run that could actually make a difference. Teenagers smell fear and doubt.

 

Of course, you know your situation better but having dealt with a few teenagers, I would try that. Maybe the family therapy can help here as well. Good luck. It sounds like a horrible situation on top of all the health issues. Can't imagine how hard it is to deal with this. 

 

 

[Alan1234]

14 hours ago, Onmyway said:

 

I still think that well enforced stronger limits might do the trick. She needs to know that you and your wife can handle her volatility and violence. She herself needs to know that she is not all powerful with respect to you. 

 

If she is not physically dangerous, I would just resist her physical outbursts calmly like you would with a 5 year old throwing a tantrum. I am not sure if you or your wife are up to it but in the long run that could actually make a difference. Teenagers smell fear and doubt.

 

Of course, you know your situation better but having dealt with a few teenagers, I would try that. Maybe the family therapy can help here as well. Good luck. It sounds like a horrible situation on top of all the health issues. Can't imagine how hard it is to deal with this. 

 

 

It’s not that I’m not upto enforcing discipline but my wife won’t support me in any way with it and says it’s between us two to sort out. When she’s screaming and hitting me and threatening to call the police of I don’t leave my own house obviously for unselfish reasons without my wife’s support I’m not going to stay and make the situation carry on and on for the sake of them. I’m not feared of the situation, I’m just very upset/depressed by it wondering why I have failed as father and how it has come to this.

I appreciate your advice though.

 

Alan 

[Onmyway]

17 minutes ago, Alan1234 said:

It’s not that I’m not upto enforcing discipline but my wife won’t support me in any way with it and says it’s between us two to sort out. When she’s screaming and hitting me and threatening to call the police of I don’t leave my own house obviously for unselfish reasons without my wife’s support I’m not going to stay and make the situation carry on and on for the sake of them. I’m not feared of the situation, I’m just very upset/depressed by it wondering why I have failed as father and how it has come to this.

I appreciate your advice though.

 

Alan 

Hi Alan, 

I would not consider any of this as failing as a father (and I am not saying that to make you feel better). It is just an unfortunate family dynamic that is perpetuated also by your wife not supporting you and I can see how upsetting it can be if your daughter starts screaming and hitting you. Good family therapy can help you sort through this if you can access it and provide better advice on how to resolve this unpleasant situation without upsetting you further.

 

But it may also be worth calling her bluff on calling the police although I understand you may not want to escalate the situation. But in her mind you retreating may look like she is winning rather than you being wise and not escalating the situation. 

 

I wish you good luck and please don't blame yourself over this. It's a complex family dynamic issue - it can be resolved with help. You haven't failed as a parent. You are still a parent and this can pass and improve just like withdrawal with the right help. 

 

 

 

 

[Rosetta]

Hi, Alan.  I was wondering about you yesterday.  I hope you are doing all right. —Rosetta

[Alan1234]

3 hours ago, Rosetta said:

Hi, Alan.  I was wondering about you yesterday.  I hope you are doing all right. —Rosetta

Hey Rosetta

 

Thank you for the message it’s much appreciated it really helps. 
 

I hope you are well.

I’m ok thank you.
I’ve been having some dark days and been stuck in a long wave. I’m getting extremely fatigued all the time for some reason. I’m just taking one day at a time and trying to keep my hopes up that one day it will be better. I keep telling myself to just get to 10% of the time that I have taken these drugs for in my lifetime and then it may get better from that point on. I’m also trying not to let my mood be down on consecutive days and little challenges like that to myself 

[Rosetta]

Good.  Your attitude is inspiring.  The undulating moods are difficult, I know.  They very slowly smooth out and then, if you are like me, you will occasionally have a surprisingly good or bad mood for a few hours.  Otherwise, it will be better overall.  Baby steps, and you will get there!

[Alan1234]

Really having a bad time of it and getting daily suicidal thoughts again. Im crying everyday and my anxiety is awful. I’m back at work but I can’t sleep at nights and can barely hold a conversation in work I’m so fatigued all the time even though I can’t sleep and I’m this brain fog most of the days.

My boss and other staff have even asked if I have been drinking as it’s so noticeable and they have been commenting on how I park my car as they have said it’s that bad. 
 

my wife is divorcing me because she says she doesn’t want to spend her life with someone with my mental health problems and I still have not seen my daughter. 
 

I really don’t know what to do anymore and yearn for some normality to life with no fatigue, and being happy and appreciative of things. This is my 3rd major episode in my life and since I’ve come off the drugs by far the longest. I’m not sure how much longer I can go on. The psychiatrist wants me to try Vortioxetine I’m that desperate and the stress of having lost my wife and having no friends I yearn to be able to function again. Maybe I have to accept my brain and CNS is that damaged from years of these drugs that is If I want any normality I should try the drugs again. I can’t remember any basic information and the fatigue and depression could not be any worse. 
 

I know this is an anti drugs site and I’m not saying all this stuff lightly I just have no one else who understands all this stuff 

[Rosetta]

Hi, Alan, 

 

I am sorry to hear that you are in a tough wave.  I would like to offer support, and I know the desperation you must be feeling.  Your wife isn’t handing this as I wish she were, at all.  The extra stress that puts on you is very unfortunate.  Your daughter, too, is reacting poorly, and while that’s understandable, given her age, I’m so sorry.

 

Can you call a hotline to talk about your feelings?

 

I empathize with your hope that a different drug will help you.  That’s everyone’s hope, I believe - that some cure for PAWS will be found.
 

When it comes to cures, test subjects have undergone physical exams, and bloodwork.  They appear physically healthy when they begin, and if they have adverse reactions, often that is hidden when the drugs are approved.  The research is not geared toward the needs of people like us.  So, the safety of the drugs, as little attention as is given to that, is the safety for people who are healthy enough to risk undergoing an experimental drug treatment.  Then, the companies guess at how much safer the drug needs to be for sick people.  Maybe they weaken it a bit.  I don’t know, but what I do know is that you and I are at the other end of the spectrum.  Most drugs are going to worsen our conditions (especially at regular doses.)

 

You might notice that even when someone on this site gets a suggestion to reinstate, it is never, ever with Vortioxetine unless that was the original drug.

 

My life is a cautionary tale about taking ADs when suffering from “depression.”  I had surgery when I was 10, and depression afterward.  No one gave me psych drugs, but my teenage years were pretty bad.  I never understood why until I quit ADs 4.5 years ago.
 

As I learned more about the condition that quitting antidepressants causes, dysautonomia, I came to understand why I had recurrent depressive episodes throughout my life.  They can be caused by drugs other than ADs, and they can occur due to adverse reactions, too.  Anesthesia is a common culprit.

 

I finally pieced together that I had experienced repeated adverse reactions after another surgery I had at the age of 18.  It takes many months or even years to recover such that we can drink alcohol or use a medication without having an increase in the dysautonomia and thus, the waves.  I am certain that if I had known (and accepted) that I needed a couple of years without any standard dosages of drugs (or alcohol) to recover my life would have been very different.  Instead, after a traumatic experience, I asked a psychiatrist for help.  Because of that, I spent the next 32 years struggling with waves.  
 

I tried ADs numerous times because months would go by, I would begin to feel better, and then a particularly bad wave would arrive.  I had no idea there were waves and windows.  I had no idea I had dysautonomia.  I saw these episodes as the return of my illness.  

 

My point is that this is a site for going off drugs because for people in dysautonomia, the drugs, as they are prescribed by doctors today, prolong our suffering.  They restart the clock for the time of healing the nervous system.  Many people end up much worse off and even institutionalized and forced to take drugs that harm them.  The dysautonomia can get so severe that psychosis results.  
 

So, this isn’t what you want to hear, but it’s what you need to hear.  The NHS, as it exists today, is a dangerous place for you.  There is change afoot, but only in that a slow wean off ADs is recommended.  Once the nervous system is destabilized, they don’t have a viable plan for anyone.

Alan, things are scary right now.  That your coworkers are noticing your condition is very nerve wracking.  It is also an enormous warning sign that your system is too fragile for Vortioxetine or anything else like that.  Please don’t make the mistakes I made.  When I started Celexa in 2001, I was feeling suicidal.  I had plans, and I even tried to get the stuff to carry one out, but I was so sick, I couldn’t even do that.  If I had known, if SA had existed, if someone had told me what was happening to me, maybe I could have waited out the wave.  Then, the suicidal feelings would have passed, and my system would have slowly recovered.  That is what I want for you, of course.

 

Please hang in there and trust us that this will pass.

 

Rosetta
 

 

[Rosetta]

I think you can call 116 123 in the UK to reach the Samaritans.  They will chat with you to help you through a bad time.  You can talk about anything.  

 

You can talk about suicide, but if you do, do not answer their questions about your location, phone number, or name.  They will call an ambulance if they have this info, and they think you will harm yourself.  The website says they won’t do that against your wishes until you are unconscious or incoherent.  I think I would feel more comfortable talking about suicide if they did not know my name or location.
 

However, if you want them to call an ambulance you can agree to that.  You may end up involuntarily committed and forced to take drugs.
 

samaritans.org. The website has different numbers for Wales, Scotland and Ireland.

[Alan1234]

13 minutes ago, Rosetta said:

Hi, Alan, 

 

I am sorry to hear that you are in a tough wave.  I would like to offer support, and I know the desperation you must be feeling.  Your wife isn’t handing this as I wish she were, at all.  The extra stress that puts on you is very unfortunate.  Your daughter, too, is reacting poorly, and while that’s understandable, given her age, I’m so sorry.

 

Can you call a hotline to talk about your feelings?

 

I empathize with your hope that a different drug will help you.  That’s everyone’s hope, I believe - that some cure for PAWS will be found.
 

When it comes to cures, test subjects have undergone physical exams, and bloodwork.  They appear physically healthy when they begin, and if they have adverse reactions, often that is hidden when the drugs are approved.  The research is not geared toward the needs of people like us.  So, the safety of the drugs, as little attention as is given to that, is the safety for people who are healthy enough to risk undergoing an experimental drug treatment.  Then, the companies guess at how much safer the drug needs to be for sick people.  Maybe they weaken it a bit.  I don’t know, but what I do know is that you and I are at the other end of the spectrum.  Most drugs are going to worsen our conditions (especially at regular doses.)

 

You might notice that even when someone on this site gets a suggestion to reinstate, it is never, ever with Vortioxetine unless that was the original drug.

 

My life is a cautionary tale about taking ADs when suffering from “depression.”  I had surgery when I was 10, and depression afterward.  No one gave me psych drugs, but my teenage years were pretty bad.  I never understood why until I quit ADs 4.5 years ago.
 

As I learned more about the condition that quitting antidepressants causes, dysautonomia, I came to understand why I had recurrent depressive episodes throughout my life.  They can be caused by drugs other than ADs, and they can occur due to adverse reactions, too.  Anesthesia is a common culprit.

 

I finally pieced together that I had experienced repeated adverse reactions after another surgery I had at the age of 18.  It takes many months or even years to recover such that we can drink alcohol or use a medication without having an increase in the dysautonomia and thus, the waves.  I am certain that if I had known (and accepted) that I needed a couple of years without any standard dosages of drugs (or alcohol) to recover my life would have been very different.  Instead, after a traumatic experience, I asked a psychiatrist for help.  Because of that, I spent the next 32 years struggling with waves.  
 

I tried ADs numerous times because months would go by, I would begin to feel better, and then a particularly bad wave would arrive.  I had no idea there were waves and windows.  I had no idea I had dysautonomia.  I saw these episodes as the return of my illness.  

 

My point is that this is a site for going off drugs because for people in dysautonomia, the drugs, as they are prescribed by doctors today, prolong our suffering.  They restart the clock for the time of healing the nervous system.  Many people end up much worse off and even institutionalized and forced to take drugs that harm them.  The dysautonomia can get so severe that psychosis results.  
 

So, this isn’t what you want to hear, but it’s what you need to hear.  The NHS, as it exists today, is a dangerous place for you.  There is change afoot, but only in that a slow wean off ADs is recommended.  Once the nervous system is destabilized, they don’t have a viable plan for anyone.

Alan, things are scary right now.  That your coworkers are noticing your condition is very nerve wracking.  It is also an enormous warning sign that your system is too fragile for Vortioxetine or anything else like that.  Please don’t make the mistakes I made.  When I started Celexa in 2001, I was feeling suicidal.  I had plans, and I even tried to get the stuff to carry one out, but I was so sick, I couldn’t even do that.  If I had known, if SA had existed, if someone had told me what was happening to me, maybe I could have waited out the wave.  Then, the suicidal feelings would have passed, and my system would have slowly recovered.  That is what I want for you, of course.

 

Please hang in there and trust us that this will pass.

 

Rosetta
 

 

Thank you for this Rosetta it is very helpful. I realise from what you say I have pretty severe dysautonimia.

The heavy full body attacks of sweating started on Venlafaxine as did the severe OAB. 
 

the sweating has stopped now I’m off Venlafaxine but I’ve been left going to the toilet typically 22/25x a day with my bladder. I’ve been on different medications for that which haven’t helped one bit and didn’t consider them. The urologist has started me on another one two weeks ago called Solificenicin which has given me an extremely dry throat and thirst with slightly blurred vision. Maybe that has contributed to this severe wave. I also note I have had 10 different surgeries over the years the latest in 2019. I’ve also been told I require a spinal fusion which may be exacerbating my bladder, although the doctors say it isn’t and I have a normal bladder and they can’t find any cause for the problems. I’m trying to work and have been off sick numerous times this year. I keep battling but I don’t think I can manage it anymore that’s why I was wondering If all my symptoms were depression and hence asked the question about taking a new anti depressant. I only started on these damn drugs when I developed irritable bowel in 2003 and they put me on Paxil for it and when my symptoms got better they said it was proof that it was a somatic manifestation of depression and then they  ever ever monitored me again on these drugs until I did have my first episode of depression In 2014.
I’m so confused with whether to have a spinal fusion and what I can hope for me life 

[Rosetta]

Ten surgeries?!  Are you in pain and that is the reason for the spinal fusion?

[Rosetta]

You didn’t have depression when you started ADs? You had bladder issues and a doctor gave you an AD.  When that “helped,” he said that your bladder issue was caused by depression which you did not even feel?

 

Alan, you need to get mad!  You need to refuse to allow these doctors to force you to take your own life.  This is outrageous.  Prescribing Vortioxetine to someone under these conditions should be considered malpractice.  
 

You can heal from this.  Your body can heal you.  It’s going to take some time.  This should never gone this far.  I’m apoplectic.  

[Alan1234]

9 minutes ago, Rosetta said:

Ten surgeries?!  Are you in pain and that is the reason for the spinal fusion?

Yes 3 on shoulders, two broken legs so 1 surgery, 1 hand surgery, 1 knee surgery, 1 nose surgery for deviated septum, 1 appendix, 2 surgeries for broken bones in my foot.

 

I played a lot of sports when I was younger. I have no disc left at the bottom level in my back, so it has been bone on bone for a few years a d this has caused it to have loads of tiny fractures which then have become painful. TBH the back pain is the least of my concerns atm I’ve learnt how to manage it, obviously it limits what I can do 

[Alan1234]

6 minutes ago, Rosetta said:

You didn’t have depression when you started ADs? You had bladder issues and a doctor gave you an AD.  When that “helped,” he said that your bladder issue was caused by depression which you did not even feel?

 

Alan, you need to get mad!  You need to refuse to allow these doctors to force you to take your own life.  This is outrageous.  Prescribing Vortioxetine to someone under these conditions should be considered malpractice.  
 

You can heal from this.  Your body can heal you.  It’s going to take some time.  This should never gone this far.  I’m apoplectic.  

I tried 12mths without medication for my bladder but it just got worse and worse and I’m only on 1.25mg of mirtazapine now and the bladder won’t seem to get better.

ive never connected the dots but when my sleep is really bad like it is atm my bladder gets a lot  worse too. I find it I can sleep my nervous system and symptoms are far more manageable. I really don’t know what I can do for my sleep I think that’s the biggest key to help my nervous system recover 

[Rosetta]

I don’t mean to sound unsympathetic about overactive bladder, but to prescribe ADs for that seems irresponsible.  Doctors, generally, are not respectful of the power these drugs have.  The effect on our muscles is downright scary.

 

Here’s my guess, some drug caused you to have overactive bladder.  It was a symptom of dysautonimia.  It may have resolved on its own, but quitting a drug that caused it to stop set off a domino effect.  Every drug you took since then has perpetuated the condition via adverse reactions in a sensitive nervous system.

 

Yes, sleep is key.  There are things you can do such as having a very strict routine and ritual surrounding bedtime.  

 

Going to bed at the same time every night and getting up at the same time every morning — that is for people who don’t have insomnia, right?  The rest of us laugh at that, but ritual is effective.  Lie down at the same time, but get extra sleep in the morning when you can because in WD we can’t nap very well during the day.  If you need to get up after you lie down, that’s ok, but be in bed at that time every night for at least an hour.  Read a book, listen to a guided mediation, something.  I found that listening to the same book on Audible every night helped a lot.  Try Odd and the Frost Giants.  Neil Gaiman reads his own book, and his voice is very soothing for me, at least.

 

Before you lie down you need a ritual.  Stop using screens 1 hour prior to bed.  You could lay out the things you need to leave the house with the next day, then make a list of what you need to do the next day, put your shoes by the door, your coat, your bag, etc.  
 

Then, have a cup of non-caffeinated tea.  I like lavender tea - lavender camomile is lovely.  Really enjoy the tea.  Taste it.  Don’t watch tv or anything.  Bring your attention back to the tea when it wanders. 
 

Then, take a bath or shower.  The warmth helps to get you ready for bed.  Maybe find a soothing type of music for this time.  Focus on the warmth, bring your attention back to the warmth.  Listen to the same music every night.  Maybe the same long song on a loop.  
 

For sleep, wear something comfortable, but the same type of thing — something that feels the same every night.  That’s easy for a man.  You don’t have too many options.  Then, put on the audible book, and lie down.  
 

Do these things in the same order every night.  It doesn’t matter which things you choose to include.  The idea is for everything to be exactly the same over and over again for six weeks.  

 

Decide on a ritual and do it for six weeks minimum.  After that you can change the ritual a bit. Add something, take away something, but change very little at one time.  Rituals are calming.  That’s why they are included in every religion, every cult, every despotic political regime, ha ha.  They are very effective at creating a sense of order and safety.  Your body needs that.

 

Rosetta

 

 

[Rosetta]

Oh, and you can start small with just one thing such as the book at bedtime.  Add each element in over time as it can be overwhelming to do it all at once.

[Alan1234]

On 8/28/2021 at 4:50 PM, Rosetta said:

I don’t mean to sound unsympathetic about overactive bladder, but to prescribe ADs for that seems irresponsible.  Doctors, generally, are not respectful of the power these drugs have.  The effect on our muscles is downright scary.

 

Here’s my guess, some drug caused you to have overactive bladder.  It was a symptom of dysautonimia.  It may have resolved on its own, but quitting a drug that caused it to stop set off a domino effect.  Every drug you took since then has perpetuated the condition via adverse reactions in a sensitive nervous system.

 

Yes, sleep is key.  There are things you can do such as having a very strict routine and ritual surrounding bedtime.  

 

Going to bed at the same time every night and getting up at the same time every morning — that is for people who don’t have insomnia, right?  The rest of us laugh at that, but ritual is effective.  Lie down at the same time, but get extra sleep in the morning when you can because in WD we can’t nap very well during the day.  If you need to get up after you lie down, that’s ok, but be in bed at that time every night for at least an hour.  Read a book, listen to a guided mediation, something.  I found that listening to the same book on Audible every night helped a lot.  Try Odd and the Frost Giants.  Neil Gaiman reads his own book, and his voice is very soothing for me, at least.

 

Before you lie down you need a ritual.  Stop using screens 1 hour prior to bed.  You could lay out the things you need to leave the house with the next day, then make a list of what you need to do the next day, put your shoes by the door, your coat, your bag, etc.  
 

Then, have a cup of non-caffeinated tea.  I like lavender tea - lavender camomile is lovely.  Really enjoy the tea.  Taste it.  Don’t watch tv or anything.  Bring your attention back to the tea when it wanders. 
 

Then, take a bath or shower.  The warmth helps to get you ready for bed.  Maybe find a soothing type of music for this time.  Focus on the warmth, bring your attention back to the warmth.  Listen to the same music every night.  Maybe the same long song on a loop.  
 

For sleep, wear something comfortable, but the same type of thing — something that feels the same every night.  That’s easy for a man.  You don’t have too many options.  Then, put on the audible book, and lie down.  
 

Do these things in the same order every night.  It doesn’t matter which things you choose to include.  The idea is for everything to be exactly the same over and over again for six weeks.  

 

Decide on a ritual and do it for six weeks minimum.  After that you can change the ritual a bit. Add something, take away something, but change very little at one time.  Rituals are calming.  That’s why they are included in every religion, every cult, every despotic political regime, ha ha.  They are very effective at creating a sense of order and safety.  Your body needs that.

 

Rosetta

 

 

I will try all the things together and introduce them slowly in a ritual as you say. I have tried them already but I’m not consistent enough or disciplined enough and my mind just gets carried away and i just get super anxious over what has happened to me and it’s affects such as losing my family.
 

i feel like my system just gets triggered into fight or flight and is stuck there as I haven’t come to terms with losing my wife and not seeing my daughter. They were my life and everything to me. Until I accept what has happened I can’t calm my system. I am so angry what the drugs have done to me and this also drives my fight or flight as it just makes me anxious about my future and what it will look like in terms of all my physical symptoms. The uncertainty and seemingly lack of control keeps driving my anxiety. Other than the kind support of people on here and my mother I feel like I have no one and my life is meaningless. I am looking into online support groups as I need to stop feeling sorry for myself and try and support others who have been through probably 10x what I have. 
i wish I wasn’t so sensitive, it can feel like a curse in this world. 

[Rosetta]

Yes, it’s a very tough combination — withdrawal anxiety coupled with the extreme disappointment and grief that accompany the distancing of your wife and daughter.  I can’t quite understand your wife, and yet I know my husband has suffered a lot with my illness.  Your intense feelings are normal for anyone who has lost those relationships.  
 

I identify with your sense of loneliness, too.  Add to all of that neuro-emotions caused by withdrawal, and wow.  It’s truly horrible.  I would feel such a profound sense of grief.  I don’t think you are expressing emotions that are “overly sensitive” when it comes to feeling abandoned and alone, but I don’t doubt that those feelings are intensified by WD.  

 

I’m so glad you have your mother.  I think your daughter will mature and be in your life again.  She’s not indifferent.  She’s very emotional about this.  As you improve, you will have a chance to repair that relationship.  
 

Whatever you do, don’t beat yourself up about being inconsistent with the ritual.  It will be more effective if you can be consistent, but your mind is yo-yo ing, and it’s going to be hard.  You will find that your discipline comes and goes.  That may be unavoidable for awhile.  It’s not an all or nothing project — it will be a work in progress for quite sone time.

 

Hang in there, R

[Alan1234]

On 8/30/2021 at 11:24 AM, Rosetta said:

Yes, it’s a very tough combination — withdrawal anxiety coupled with the extreme disappointment and grief that accompany the distancing of your wife and daughter.  I can’t quite understand your wife, and yet I know my husband has suffered a lot with my illness.  Your intense feelings are normal for anyone who has lost those relationships.  
 

I identify with your sense of loneliness, too.  Add to all of that neuro-emotions caused by withdrawal, and wow.  It’s truly horrible.  I would feel such a profound sense of grief.  I don’t think you are expressing emotions that are “overly sensitive” when it comes to feeling abandoned and alone, but I don’t doubt that those feelings are intensified by WD.  

 

I’m so glad you have your mother.  I think your daughter will mature and be in your life again.  She’s not indifferent.  She’s very emotional about this.  As you improve, you will have a chance to repair that relationship.  
 

Whatever you do, don’t beat yourself up about being inconsistent with the ritual.  It will be more effective if you can be consistent, but your mind is yo-yo ing, and it’s going to be hard.  You will find that your discipline comes and goes.  That may be unavoidable for awhile.  It’s not an all or nothing project — it will be a work in progress for quite sone time.

 

Hang in there, R

Hi Rosetta

 

my wife doesn’t believe that Anti Depressants are responsible for my symptoms. She doesn’t believe that legally prescribed drugs could do this and blames me and thinks it’s just me and I need to snap out of it and somehow this is my fault l. She completely trusts Doctors as I did until this has happened. She had no idea and when I’ve tried to tell her in a non confrontational way she doesn’t say much and I even think she might think I’m abit mad. 

[Alan1234]

2 minutes ago, Alan1234 said:

Hi Rosetta

 

my wife doesn’t believe that Anti Depressants are responsible for my symptoms. She doesn’t believe that legally prescribed drugs could do this and blames me and thinks it’s just me and I need to snap out of it and somehow this is my fault l. She completely trusts Doctors as I did until this has happened. She had no idea and when I’ve tried to tell her in a non confrontational way she doesn’t say much and I even think she might think I’m abit mad. 

This is also the response I get from the psychiatrist and any doctors I have seen when I mention that PAWS could be the cause of my symptoms they all look at me like I’m mad and just stay quiet don’t even say anything or acknowledge what I have said. 
it’s obvious they truly don’t have a clue, but I wonder how they would feel if anyone in there family had been affected by something like this. The fact they don’t even listen properly to their patients is very scary

[Rosetta]

I know.  It makes ME mad!  There is no excuse for the ignorance of doctors, but these facts have been hidden from them during their education.  Older doctors have know since the 60s that drugs come with risks, anti-anxiety or “nerve” pills cause dependency and illness, and that some people react to every single drug in a way that is different than the majority.  This is all very inconvenient to them, and their heads are in the sand, but the Royal College of Psychiatry had acknowledged that withdrawal from ADs exists, and the next logical step — that PAWS can result from that withdrawal is an easy deduction.  They do not want to believe it.  That is all it is — intransigence.  It is inexcusable.  However, as they have no cure, but time, as long as you are prescribed the Mirt, they are doing what they can for you EXCEPT telling your wife the truth.  That is what is causing you harm, and it is a tragedy.  Don’t worry, they will have someone they care about hurt by this epidemic of carelessness.  They will see the truth.

 

Rosetta

[Alan1234]

7 minutes ago, Rosetta said:

I know.  It makes ME mad!  There is no excuse for the ignorance of doctors, but these facts have been hidden from them during their education.  Older doctors have know since the 60s that drugs come with risks, anti-anxiety or “nerve” pills cause dependency and illness, and that some people react to every single drug in a way that is different than the majority.  This is all very inconvenient to them, and their heads are in the sand, but the Royal College of Psychiatry had acknowledged that withdrawal from ADs exists, and the next logical step — that PAWS can result from that withdrawal is an easy deduction.  They do not want to believe it.  That is all it is — intransigence.  It is inexcusable.  However, as they have no cure, but time, as long as you are prescribed the Mirt, they are doing what they can for you EXCEPT telling your wife the truth.  That is what is causing you harm, and it is a tragedy.  Don’t worry, they will have someone they care about hurt by this epidemic of carelessness.  They will see the truth.

 

Rosetta

I wondering Rosetta if I can try just stopping the 1.5mg of Mirtazapine. I’m in a big wave and it’s not helping as far as I can tell with any of my symptoms other than slight improvements in that I can get some sleep every 3days and less extreme anxiety  I’m in a bad wave. I keep getting bad morning Akathisia in both legs and weakness in my legs and arm and the worse fatigue ever that is unrelentingly 

[Rosetta]

Alan,

 

No, please don’t do that.  Did you reduce Mirt from 1.75 to 1.5 mg yesterday?  Please go back to 1.75.  You aren’t well enough to change the dose right now.  Your body will feel that in about 2 days.  If you go back now, you might not have too much trouble.  

 

If I were you, I would not stop the Mirt cold turkey right now. I think that’s a very bad idea (unless you have posted notes and you get a suggestion from a Mod that you should.)  People usually “jump” at a dose below 1 mg when they quit.  They are not having waves or symptoms such as insomnia when they do that.
 

It may seem that Mirt is not doing anything, but you might end up losing what little sleep you have.  Mirt is a required part of your system right now.  That is the thing about dependency.  The status quo may not be good, but the drug is maintaining you.  You can’t feel that, but you feel it when the drug is suddenly gone.  You don’t want more insomnia, akathisia or additional symptoms.  
 

If Mirt is causing problems or paradoxical symptoms, the Mods may be able to tell you that after you post notes.  I don’t remember if you have ever done that before.  Do you want to ask the Mods about it?  You would need to get advice from Alto or a Mod.  I’m not qualified to make that kind of assessment.  Sorry.

 

Rosetta

 

 

 

[Alan1234]

On 9/3/2021 at 1:45 AM, Rosetta said:

Alan,

 

No, please don’t do that.  Did you reduce Mirt from 1.75 to 1.5 mg yesterday?  Please go back to 1.75.  You aren’t well enough to change the dose right now.  Your body will feel that in about 2 days.  If you go back now, you might not have too much trouble.  

 

If I were you, I would not stop the Mirt cold turkey right now. I think that’s a very bad idea (unless you have posted notes and you get a suggestion from a Mod that you should.)  People usually “jump” at a dose below 1 mg when they quit.  They are not having waves or symptoms such as insomnia when they do that.
 

It may seem that Mirt is not doing anything, but you might end up losing what little sleep you have.  Mirt is a required part of your system right now.  That is the thing about dependency.  The status quo may not be good, but the drug is maintaining you.  You can’t feel that, but you feel it when the drug is suddenly gone.  You don’t want more insomnia, akathisia or additional symptoms.  
 

If Mirt is causing problems or paradoxical symptoms, the Mods may be able to tell you that after you post notes.  I don’t remember if you have ever done that before.  Do you want to ask the Mods about it?  You would need to get advice from Alto or a Mod.  I’m not qualified to make that kind of assessment.  Sorry.

 

Rosetta

 

 

 

Tbh Rosetta I’m not sure how much 1.75mg is actually helping me anymore. Since not getting it in hospital for 5days I think my system got destabilised further. 
I’ll ask a moderator 

thank you