Alan1234: desperately seeking help

[Alan1234]

13 hours ago, Rhiannon said:

Alan I don't know if this will be any help, but I have chronically low blood pressure and low heart rate (I think it's dysautonomia from the drugs combined with my genetics). One symptom is that I get lightheaded and weak when standing for more than about 5-10 minutes. One thing that is supposed to help with that is actually crossing your legs while standing, as soon as you feel yourself getting dizzy. You might try that. It mechanically raises the blood pressure.

 

Another thing is keeping the calf muscles strong. If you can, try Googling "calf muscle pump hypotension." You can do easy seated exercises to pump that calf muscle as well as just using it during the day when you are moving around or when you are sitting.  Apparently the soleus muscle in the calf has a special function to help pump blood from the lower part of the body up to the heart, they even call it the "second heart."

 

Of course, if low blood pressure isn't the problem for you, it won't help. But maybe it will help, and no drugs involved.

 

My heart goes out to you, such a situation you are in.

 

48 minutes ago, Surviving82 said:

@Alan1234, I second what @Rosetta said about vasovagal syncope. I've had those since I was a teen, so way before any drugs. Out of the blue I have this very uncomfortable sensation that I can't breathe, I get dizzy, weak, and sweaty, and my heart beats like crazy. This lasts for about 10 seconds. The only remedy for me to prevent fainting is to sit or lay down. If I keep standing, I WILL faint. This can be triggered by prolonged standing, amongst other things, like heat or exhaustion, or even a bowel movement. These episodes are VERY scary. I've had multiple medical tests done and nothing medical was ever found to cause these, so I was told to avoid the triggers as much as I can. And if I feel an episode coming, to immediately sit or lay down. What you describe does sound like a vasovagal episode. I would suggest to try and stay calm as much as you can and to lay down immediately when you feel this happening, if possible with your legs elevated above your head. It should go away, and if it does, then most likely that's what it is. However, if you do that and still faint, then I personally would be more suspicious and would mention this to the doc next time you see them. Sorry you are going through this. I hope you feel better soon!

Thank you both for your replies 

 

no lying down with my legs elevated doesn’t change it. It feels like imagine vertigo feels like as when it starts my brain literally feels like it’s spinning and   That triggers the passing out symptoms, lying down stops me passing out but doesn’t stop it for some reason

[Alan1234]

Does anybody know of a doctor in the UK that knows about or that might be able help with my withdrawal symptoms? 
 

ive been to the latest different psychiatrist locally today and he just didn’t acknowledge me when I talked about withdrawal and offered no help with the myoclonic jerks that cause me a lot of distress.  He wants me to try a final drug called Vortioxetine. 
 

im so desperate,  I’m off work again just not functioning well and have developed new worsening symptoms such as episodes of blurred vision and lots of sensitivity to light 

[Manati]

Alan, I'm SO sorry for what you are going through right now - I can totally relate to your desperation!

In the UK there's Mark Horowitz - a psychiatrist doing reseach on discontinuation syndrome and if I'm not mistaken he's experienced it personally. I've contacted him via another researcher, Felix Hengartner, and he basically said the same thing anyone here will tell you - that there is nothing but time to fix it. I know how torturous it is, I've stopped Venlafaxine cold turkey after 15 years.

 

"I  can’t lie down because when I do I get what I think are hypic jerks and my heart suddenly pounds very hard and then misses a beat. This happens over and over again and makes it so I can’t lie down."

 

I had that, too, it's torture! But it went away!! I should add that I have reinstated 2-3 beads of Venlafaxine, but Iooking back I'm not sure that was a good idea. It blocked the anxiety but may have caused those jerks, plus akathisia and insomnia. I then introduced a tiny dose of Lyrica to help with those symptoms, but didn't like it and started tapering it straight away. In the end, like so many, I couldn't tell what caused what anymore, and the only way out is to slowly taper everything and hope for the brain to fix itself.

 

Baylissa Fredrick is UK based too, maybe you could book a consultation with her to ease your mind. https://loveyourselfbetter.com/

 

I totally relate to your worries regarding a future without ADs after such a long intake. But there are quite a few people on here who are doing fine after a long history of being polydrugged.

Check out Pug, GiaK, Sertraman and more in the success stories. And look for Callie 's thread - she's recovered a lot from Venlafaxine withdrawal and a few other drugs.

 

Please don't give up Alan, this all sucks big time but everything is changing and things won't always be like that!! 💜

 

 

 

[Alan1234]

1 hour ago, Manati said:

Alan, I'm SO sorry for what you are going through right now - I can totally relate to your desperation!

In the UK there's Mark Horowitz - a psychiatrist doing reseach on discontinuation syndrome and if I'm not mistaken he's experienced it personally. I've contacted him via another researcher, Felix Hengartner, and he basically said the same thing anyone here will tell you - that there is nothing but time to fix it. I know how torturous it is, I've stopped Venlafaxine cold turkey after 15 years.

 

"I  can’t lie down because when I do I get what I think are hypic jerks and my heart suddenly pounds very hard and then misses a beat. This happens over and over again and makes it so I can’t lie down."

 

I had that, too, it's torture! But it went away!! I should add that I have reinstated 2-3 beads of Venlafaxine, but Iooking back I'm not sure that was a good idea. It blocked the anxiety but may have caused those jerks, plus akathisia and insomnia. I then introduced a tiny dose of Lyrica to help with those symptoms, but didn't like it and started tapering it straight away. In the end, like so many, I couldn't tell what caused what anymore, and the only way out is to slowly taper everything and hope for the brain to fix itself.

 

Baylissa Fredrick is UK based too, maybe you could book a consultation with her to ease your mind. https://loveyourselfbetter.com/

 

I totally relate to your worries regarding a future without ADs after such a long intake. But there are quite a few people on here who are doing fine after a long history of being polydrugged.

Check out Pug, GiaK, Sertraman and more in the success stories. And look for Callie 's thread - she's recovered a lot from Venlafaxine withdrawal and a few other drugs.

 

Please don't give up Alan, this all sucks big time but everything is changing and things won't always be like that!! 💜

 

 

 

Hi Manati,

thanks so much for your reply 

I feel horrific awake to Akathisia and severe anxiety every morning, insomnia due to the palpations and jerks and then palpations in the day and now severe fatigue it’s unbelievable. I just can’t believe how much these drugs have done.

I will check out the positive posts you have referenced as I need some hope and strength

thank you 

[Manati]

Have you tried Melatonin for sleep? I take 2mg extended release and it helps me. My akathisia has gone, too - maybe the lyrica helped with that ( and the jerks?), but I think it will pass anyway at some point - the question is when. So I'm not recommending more medication, it's probably best to wait it out.

Can you go out and walk? I have fatigue, too, but I go out and walk in nature everyday, it helps me distract a little and I think its good for recovery..

[Alan1234]

9 minutes ago, Manati said:

Have you tried Melatonin for sleep? I take 2mg extended release and it helps me. My akathisia has gone, too - maybe the lyrica helped with that ( and the jerks?), but I think it will pass anyway at some point - the question is when. So I'm not recommending more medication, it's probably best to wait it out.

Can you go out and walk? I have fatigue, too, but I go out and walk in nature everyday, it helps me distract a little and I think its good for recovery..

Yes I take melotonin every night which I think helps as now I get broken sleep about 3nights a week if I’m lucky which is still a big improvement. I developed it polyuria which cause is still undiagnosed on Venlafaxine and that’s one of the reasons for stopping anti depressants. However it hasn’t improved since stopping. On a very good night I’m up 3/4 times on a bad night 8/10 times but at least I can sometimes sleep in between. 
 

I have been going out for walks most days. However I’ve been getting lots of palpitations and now an ECG had picked up Ventricular tachycardia so I’m awaiting further investigation for this. I’m also getting chest pains at the same time so although I know walking is beneficial I have to be careful on my own as it can get frightening. It’s unbelievable all these problems only started over the last 2 yrs before that always fit and healthy 

[Manati]

I know, it's unbelievable.. I'm so sorry you have to experience that nightmare!! I'd still try to keep walking as much as you're comfortable with. I really hope you'll find at least some relief soon!

 

 

3 hours ago, Alan1234 said:

 

Yes I take melotonin every night which I think helps as now I get broken sleep about 3nights a week if I’m lucky which is still a big improvement. I developed it polyuria which cause is still undiagnosed on Venlafaxine and that’s one of the reasons for stopping anti depressants. However it hasn’t improved since stopping. On a very good night I’m up 3/4 times on a bad night 8/10 times but at least I can sometimes sleep in between. 
 

I have been going out for walks most days. However I’ve been getting lots of palpitations and now an ECG had picked up Ventricular tachycardia so I’m awaiting further investigation for this. I’m also getting chest pains at the same time so although I know walking is beneficial I have to be careful on my own as it can get frightening. It’s unbelievable all these problems only started over the last 2 yrs before that always fit and healthy 

 

[Manati]

How are you doing these days @Alan1234?

[Alan1234]

4 hours ago, Manati said:

How are you doing these days @Alan1234?

I’m doing ok. I’m really struggling with my sleep and feel so tired everyday I can hardly stay awake but it could be so much worse and compared to a couple of weeks back I’m so much better. I’m still really down but just trying to get through each day at a time. I’m keeping the faith that eventually it will all pass.

 

thank you for your message it really helps lift my spirits and keeps me determined to do this without the awful drugs they want to prescribe all the time even in this day and age. It really helps to to know there are other people out there who have been through this and have come out the other side or that there are other people going through it that are helping to support me

 

Thank you Manati  

How are you doing ?

[Manati]

I'm so relieved to hear that you're feeling a little bit better, Alan - I was really worried about you, I know how terrible this early withdrawal feels. Yes it will pass!! It's just a really sh*tty phase in your life.

The success stories are my lifeline, too - I'd say I have improved physically, but my anhedonia/emotional anesthesia is so bad, I barely make it through the day, feeling like a hopeless zombie.. Let's just hope for the best for both of us!

[Alan1234]

36 minutes ago, Manati said:

I'm so relieved to hear that you're feeling a little bit better, Alan - I was really worried about you, I know how terrible this early withdrawal feels. Yes it will pass!! It's just a really sh*tty phase in your life.

The success stories are my lifeline, too - I'd say I have improved physically, but my anhedonia/emotional anesthesia is so bad, I barely make it through the day, feeling like a hopeless zombie.. Let's just hope for the best for both of us!

Yes indeed! We can overcome this!

im happy to help you also if I can in anyway. I’m still in disbelief that the medical profession prescribes these drugs that they have no idea what they do.

[Manati]

That's really kind of you, thank you!! Yes, I know.. I've talked to 3 neurologists and not one of them believed me or new what to do. Also, they didn't want to know.

How is your anxiety? Do you feel anhedonic/flat or your full range of emotions?

 

1 hour ago, Alan1234 said:

Yes indeed! We can overcome this!

im happy to help you also if I can in anyway. I’m still in disbelief that the medical profession prescribes these drugs that they have no idea what they do.

 

[Alan1234]

43 minutes ago, Manati said:

That's really kind of you, thank you!! Yes, I know.. I've talked to 3 neurologists and not one of them believed me or new what to do. Also, they didn't want to know.

How is your anxiety? Do you feel anhedonic/flat or your full range of emotions?

 

 

I feel flat all the time then the slightest thing that is stressful in my life like unexpected bills or constant not normal very  high/low blood tests send me in to a very high uncontrollable anxiety. I can’t seem to rest as the Doctors don’t know why my bloods are all over the place and no one wants to take me on because so many of my tests aren’t normal 

[Altostrata]

2 minutes ago, Alan1234 said:

my bloods are all over the place and no one wants to take me on because so many of my tests aren’t normal 

 

Which of your tests are not normal?

 

It is unusual for drug-related difficulties to be apparent in blood tests, unless the drugs have affected organs.

[Alan1234]

6 minutes ago, Altostrata said:

 

Which of your tests are not normal?

 

It is unusual for drug-related difficulties to be apparent in blood tests, unless the drugs have affected organs.

Serum ALT, eGFR, serum creatinine , serum bilirubin, serum ferritin, serum urea, serum parathyroid 

 

[Altostrata]

You need to have someone look closely at your liver and kidneys. Did you ever have these types of abnormal test results before? Those tests can be elevated in drug-induced damage, autoimmune disease, or prolonged alcohol use.

[Alan1234]

Just now, Altostrata said:

You need to have someone look closely at your liver and kidneys. Did you ever have these types of abnormal test results before? Those tests can be elevated in drug-induced damage, autoimmune disease, or prolonged alcohol use.

Hey Altostrata 

The only abnormal result I had before was high bilirubin as I have Gilberts syndrome that does after my Liver function.  my Doctor sent me to the hospital and although all my readings are higher and outside  the normal ranges they just told me they can’t find a cause for them. They say I have a fatty liver which is bizarre as i only weight 170lbs and don’t drink alcohol. They say yes they are high but there not extremely high and are saying it’s most likely neurological cause like stress and anxiety. I don’t drink alcohol or take any drugs. My diet is really healthy and I am usually able to exercise 5 days a week. My only other symptoms are fatigue but I think this is due to the sleep problems from the PAWS. I do get reoccurrent red rashes that burn in my face that come and go.  The health care system in the UK isn’t very good unless you have something that is an emergency or very obvious to treat. If it’s something out of the norm the local hospitals just always say they don’t know the cause and just shrug their faces 🤷🏻

[Altostrata]

I don't know anything about Gilberts syndrome, but if I were you, I'd question them closely about your liver and kidney health and possible autoimmune reaction.

 

However, your current drug burden is not high, so it's not likely the cause.

[Rosetta]

How are you, Alan?

[Alan1234]

17 hours ago, Rosetta said:

How are you, Alan?

 Hi Rosetta

 

im ok, anxiety still high and still not sleeping very good a d lots of very down days, But I’ve been much worse at times so I suppose it’s progress.

 

The cardiologist cleared my heart. He says he can’t find anything structurally wrong with it and has no idea what has caused the VT. He has cleared me for everything again. So again good news but very weird. He says most likely an adrenogenic cause and has referred me to a endocrinologist. 

[Rosetta]

I am so happy to read that!   Wonderful!  You must be so relieved.  The endocrine system is strongly affected by WD.  I hope you won’t be prescribed any medicines that affect that system.  I believe it needs to be left alone.  The body pushes back against what we do to change it unless we are affecting it only slightly in natural ways.  Even caffeine and tobacco and THC, in the forms that we buy today, are too strong.  They aren’t really natural.  
 

I hope you will keep us updated when you can.

 

Rosetta

[Alan1234]

3 minutes ago, Rosetta said:

I am so happy to read that!   Wonderful!  You must be so relieved.  The endocrine system is strongly affected by WD.  I hope you won’t be prescribed any medicines that affect that system.  I believe it needs to be left alone.  The body pushes back against what we do to change it unless we are affecting it only slightly in natural ways.  Even caffeine and tobacco and THC, in the forms that we buy today, are too strong.  They aren’t really natural.  
 

I hope you will keep us updated when you can.

 

Rosetta

Yes it is great news!

Im no longer required to take the beta blockers so I’ve been off them almost 2 weeks now. The cardiologist did want to prescribe me something to increase my salts and electrolytes but I’m not sure of the name of it yet.

im currently only taking 1.75mg of Mirtazapine and that’s it.

 

The hardest thing is my wife and daughter don’t want to see me anymore and it makes me very sad and lonely. I’m hoping if I can stay well enough to maybe try travelling to Thailand and hope to do a retreat in a monastery or something like that. I feel somehow that I need to be part of a group or a community as I’m so isolated and alone as I’ve lost touch with any friends i had. 
 

thank you for your message as always it means a lot to know their are people thinking of you and it really does help to get through this. 

[Rosetta]

Alan, is your daughter young?  I’m very sorry to hear that.  This situation is so outrageously unfair.  This is a real medical condition — an iatrogenic condition — and to have doctors invalidate the reality that our minds are hijacked by physical dependency or adverse reactions such that our loved ones abandon us!  I feel that your wife should be more understanding regardless, but without honesty on the part of doctors, it’s no surprise some spouses react this way.

[Alan1234]

12 hours ago, Rosetta said:

Alan, is your daughter young?  I’m very sorry to hear that.  This situation is so outrageously unfair.  This is a real medical condition — an iatrogenic condition — and to have doctors invalidate the reality that our minds are hijacked by physical dependency or adverse reactions such that our loved ones abandon us!  I feel that your wife should be more understanding regardless, but without honesty on the part of doctors, it’s no surprise some spouses react this way.

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 

[Altostrata]

Low sodium or potassium can cause odd symptoms, fyi.

[Alan1234]

29 minutes ago, Altostrata said:

Low sodium or potassium can cause odd symptoms, fyi.

Yes they want to send me to an Endocrinologist for those reasons. Also another blood test showed that I might have hypoparathyroidism unless the blood test was an anomaly. However the reasons for low sodium and potassium could well be down to the fact that I have undiagnosed polyuria. Sorry it’s one thing after another. Unless it’s something very obvious and even then the medical care over here can be very poor 

[Shebon]

Hi Alan:

 

I just read through your story .... I am so sad to hear you lost your job and family.  Insomnia is so insidious and it makes one wonder if they will ever sleep normally again.  

 

I have tapered off Ambien and Ativan in 2011 .... I started mirtazapine in 3/2013.  I now think that the thyroid med I was taking has contributed to a whole mess of sleep and physical problems.  Quit the med in March this year and hoping to stabilize.  Over a week ago, I couldn't find my normal multi-vitamin so I switched to another and that is giving me insomnia.  So am dumping that stuff. 

 

Has anything changed since you were sleeping to now not sleeping?  My CNS is super sensitive so I have to watch out for any change in food or supplement.  

 

You are on a very low dose of mirt...I don't know what bisoprolol is but be sure to take it 2 hrs. from the mirt.  Mirt needs full absorption in the stomach or else withdrawals are felt.  

 

Best regards,

Shebon

[Alan1234]

6 minutes ago, Shebon said:

Hi Alan:

 

I just read through your story .... I am so sad to hear you lost your job and family.  Insomnia is so insidious and it makes one wonder if they will ever sleep normally again.  

 

I have tapered off Ambien and Ativan in 2011 .... I started mirtazapine in 3/2013.  I now think that the thyroid med I was taking has contributed to a whole mess of sleep and physical problems.  Quit the med in March this year and hoping to stabilize.  Over a week ago, I couldn't find my normal multi-vitamin so I switched to another and that is giving me insomnia.  So am dumping that stuff. 

 

Has anything changed since you were sleeping to now not sleeping?  My CNS is super sensitive so I have to watch out for any change in food or supplement.  

 

You are on a very low dose of mirt...I don't know what bisoprolol is but be sure to take it 2 hrs. from the mirt.  Mirt needs full absorption in the stomach or else withdrawals are felt.  

 

Best regards,

Shebon

Hi Shebon

thank you for your advice. I only developed insomnia after 6wks of what I now know was an abrupt stoppage of venlafaxine which I had been on for 6yrs. My Doctor told me to reduce and I just followed his instructions. Then the insomnia started and has been now for over 12mths. I was then out on mirtazapine a few mths later that helped a little with my sleep as in I could sleep around 2/3 days a week out of 7 on it. Then I started to develop Akathisia when they increased the dose for my anxiety which also started at the same time as the insomnia. When I reduced my Mirtazapine back down then I couldn’t sleep at all with it. I think from what I’ve learnt in this group I’m in protracted withdrawal from many years of these medications. I was well for years on these medications and ever since I’ve come off it’s one thing after another health wise. My CNS is all over the place and of course no sleep just makes this worse. The Docs just want to keep giving me more of these Anti depressants/psychotics now the anti depressants don’t agree with me anymore. It’s crazy like a bad dream everything that’s happened I just can’t understand it or work out how it’s happened. I’m only on 1.75mg of mirt now while weaning myself off it . Losing my family and my daughter not wanting to speak to me or see me I just don’t get it. We were a happy family and it’s like how did I not realise there was something up on the drugs or was I such a different person. 
 

I hope you are doing good, thanks again for your help for 

[Rosetta]

Alan, 

 

A bit of a ramble here, I’m afraid:

 

Most teenagers have a little ability to be compassionate.  That is why they made such good soldiers.  Some are old souls who are able to think of others, but it must be some sort of survival adaptation that teens think of themselves almost exclusively.  This is very normal and very hurtful, at the same time.  Right now, we all understand how painful this is, and your need to step back.

 

Of course, you should be loved and cared for while you are struggling.  Your daughter will understand what has happened to you someday.   She will realize how this situation should have been handled differently by her mother.  Waiting for that day will be hard to do.  

 

Write letters to her, and keep copies.  It may be too painful to talk to her.  The neuro-emotions of WD make this situation even more difficult for you.  I can’t imagine.  Teenagers say awful things to their parents in the best of times.  Many are strongly affected by hormones that act on their brains in ways that are similar to WD.  Try, if you can, to think of that when you feel hurt.  She is not herself, she’s not in control of herself, and she is in a great deal of pain as are you.  Instead of being supported through her father’s illness, she is being encouraged to blame you.  Maybe her words will hurt you less if you think of her as like a five year old who doesn’t realize what she’s doing - a five year who is not being taught to be nice.  It’s not quite the same, but it’s close.  Some five year olds may have more capacity for compassion.
 

You are not to blame.  I know this because there was absolutely no way for me to “do better” when I was deeply affected by WD.  I tried, and I tried and I tried.  I couldn’t even cook.  I had to keep trying, but I succeeded only when my brain had healed enough to allow that.  Having a job was out of the question.  What wanted to do for myself or others had no bearing on what I could do.

 

I hope things are going all right between you and your mother.  Perhaps you have a greater appreciation for her now that you have been a parent.  She must love you very much and find it hard to see you suffer.  Everyone has deep feelings they may not show.  This condition is so perplexing to anyone who has not experienced it.  Perhaps this is a chance to reconnect with her and repair any hurt you may have caused as a teenager.  You might look at it that way.
 

What you worked for is just that — what you worked for and achieved, Alan.  You raised your daughter to 17.  You get credit for that!  It’s hard to think of the positive — how lucky she is that you made it this far.  In the last 25 years that you took ADs, this tragedy could have befallen you at any time.  She could have been 5 or 10.  My daughter was 6 when things were very bad for me.  That yours is 17 makes her success in life all the more likely, and you made that possible.  Don’t sell yourself short.  
 

I’m sure this situation is no fun for her.  Her reaction is heartbreaking.  It’s natural for you to feel hurt.  What you do with those feelings is what is important.  Yes, you are Eeyore at the moment.  “The sky has fallen.  Always knew it would.”  There are certainly worse things to be!
You may need to disengage sometimes, and that’s ok.  

 

Calling her while you have a window may not be the best thing for you.  Hearing her say hurtful things is not necessary at that time.  You could write her a letter, perhaps.  Leave her a trail of breadcrumbs to find her way back.  Remember, the opposite of love is indifference.  She is not indifferent.  She’s angry; she’s confused.  She’s getting the wrong signals from someone else.  Indifferent people do not say hurtful things.  They ignore us completely.
 

When you have windows, you should be careful to allow some sense of normal emotion to seep in.  Don’t try to make up for lost time and then get stressed.  Just feel the difference between wave and window.  You should “Enjoy” the window because you need it to heal.  It’s hard to really enjoy anything during WD, so what I mean is let yourself be in the window.  Whatever you do while you are there, simply let yourself feel different than during the wave with no judgment about whether you feel “better.”   
 

Eventually, you will feel more positive emotions.  You may remember happier times.  Remembering happiness is the closest thing to happiness we may get, at times, because of the carnage this syndrome creates.  Let yourself feel that happiness as it will help your brain get back to normal.

Your daughter will slowly become an adult with an adult brain, and she will start to understand.  Having had you show you love her all that time will make a difference.  Maybe you can send her a card or a small gift here or there just to let her know you still care.  Keep copies of your writings inside the cards — a photo on your phone perhaps. The question she has is do you care?  It must seem absurd to you, right?  
These actions are not for today — they are so that she will remember that you made these effort to show love and concern for her.  Tokens can mean a lot.  You might even find out that she kept them.

 

You have been a part of her life since the beginning, and nothing can ever change that.  Children love their parents no matter the circumstances.  She’s far too old for anyone to turn her against you. The effort on your part to stay in touch will be appreciated someday.  I know it will be hard in the face of her rejection of you, but I suspect she’s testing you, and you don’t have to do much to meet the test.  Just don’t disappear.

 

Your mind will recover.  I know this because I am largely recovered, mentally, at least.  Physical recovery, I think will take longer, and it’s going to take work.  I need energy for that, so I have to wait.  But your mind will recover, and you will be able to work again.  When you can work again, you can try to give your daughter something material that helps her.  For now, she needs to see you made an effort to show her love.

 

Rosetta

[Altostrata]

When did polyuria start, in relation to your drug dosing?

[Shebon]

Hi Alan:

 

I just read through your story .... I am so sad to hear you lost your job and family.  Insomnia is so insidious and it makes one wonder if they will ever sleep normally again.  

 

I have tapered off Ambien and Ativan in 2011 .... I started mirtazapine in 3/2013.  I now think that the thyroid med I was taking has contributed to a whole mess of sleep and physical problems.  Quit the med in March this year and hoping to stabilize.  Over a week ago, I couldn't find my normal multi-vitamin so I switched to another and that is giving me insomnia.  So am dumping that stuff. 

 

Has anything changed since you were sleeping to now not sleeping?  My CNS is super sensitive so I have to watch out for any change in food or supplement.  

 

You are on a very low dose of mirt...I don't know what bisoprolol is but be sure to take it 2 hrs. from the mirt.  Mirt needs full absorption in the stomach or else withdrawals are felt.  

 

Best regards,

Shebon

[Alan1234]

1 hour ago, Altostrata said:

When did polyuria start, in relation to your drug dosing?

It started in 2017 three years after starting Venlafaxine. When the urologist couldn’t find a reason he suggested I stop taking the venlafaxine as it was known to cause issues. However it hasn’t improved since stopping it 

[Shebon]

Hi Alan:

 

People do heal from  protracted withdrawal -- it takes time and a whole lot of stamina and determination.  Do you take melatonin?  That supplement might help, but make sure it is 2 hrs. away from mirt again to avoid absorption problems.  Also, try magnesium glycinate a few hours before or after mirt too.  That certainly relaxes the CNS, so less akathisia.  

 

Maybe suggest counseling as a family?  Insomnia is a beast and it can create PTSD symptoms, which family members are unaware or uninformed.  It could be tricky finding a therapist who understands withdrawals and symptoms, but it might be worth it to find one.  I don't know how your health care for therapy is where you are, but it might be worth it to find the therapist first and then invite your family.  

 

Dosing mirt higher does create more akathisia so maybe not  a wise solution.  It's unfortunate that the drug companies are not forced to create an anti-dote when one wants to stop these drugs.  They profit when people are using it, but it's quite tragic to stop when one wants to stop taking the drug. 

 

Hope this helps.....I have had quite a journey through the tunnel myself.  I do want to mention that I was able to get down to 1.87 mg. mirt without much problem.  I discovered that the thyroid med was causing me issues and so I went back up to my 3.75 mg. dose.  

 

Best regards,

Shebon 

[Alan1234]

9 hours ago, Shebon said:

Hi Alan:

 

People do heal from  protracted withdrawal -- it takes time and a whole lot of stamina and determination.  Do you take melatonin?  That supplement might help, but make sure it is 2 hrs. away from mirt again to avoid absorption problems.  Also, try magnesium glycinate a few hours before or after mirt too.  That certainly relaxes the CNS, so less akathisia.  

 

Maybe suggest counseling as a family?  Insomnia is a beast and it can create PTSD symptoms, which family members are unaware or uninformed.  It could be tricky finding a therapist who understands withdrawals and symptoms, but it might be worth it to find one.  I don't know how your health care for therapy is where you are, but it might be worth it to find the therapist first and then invite your family.  

 

Dosing mirt higher does create more akathisia so maybe not  a wise solution.  It's unfortunate that the drug companies are not forced to create an anti-dote when one wants to stop these drugs.  They profit when people are using it, but it's quite tragic to stop when one wants to stop taking the drug. 

 

Hope this helps.....I have had quite a journey through the tunnel myself.  I do want to mention that I was able to get down to 1.87 mg. mirt without much problem.  I discovered that the thyroid med was causing me issues and so I went back up to my 3.75 mg. dose.  

 

Best regards,

Shebon 

Hi Shebon

 

i do take 2mg of melotonin, I do think it helps quite a lot. It helps me to get some light sleep at times. Without it I don’t get anything. Although I have been taking it at the same time as the mirt, as the melatonin says to take 30mins  before bed as it’s fast acting. I do also take magnesium which i started a couple of weeks ago but I haven’t noticed any difference off that tbh. 
 

yes I did organise 6 sessions with a family therapist but then my daughter has refused to go. Her grandmother 8wks ago so she is obviously upset from that so it would of been inappropriate to push the matter. I have asked them both again but they have said no. For me it would help tremendously but I will just have to be patient or might have to accept that they will never do it, who knows.

 

My Doc has just rang me and said I have hypoparathyroidism and he’s referring me to an Endocrinologist. I don’t think this is the same as yours? 
Did you have thyroid problems before the  benzos and medication ?

 

warm regards 

Adam 

[Alan1234]

21 hours ago, Rosetta said:

Alan, 

 

A bit of a ramble here, I’m afraid:

 

Most teenagers have a little ability to be compassionate.  That is why they made such good soldiers.  Some are old souls who are able to think of others, but it must be some sort of survival adaptation that teens think of themselves almost exclusively.  This is very normal and very hurtful, at the same time.  Right now, we all understand how painful this is, and your need to step back.

 

Of course, you should be loved and cared for while you are struggling.  Your daughter will understand what has happened to you someday.   She will realize how this situation should have been handled differently by her mother.  Waiting for that day will be hard to do.  

 

Write letters to her, and keep copies.  It may be too painful to talk to her.  The neuro-emotions of WD make this situation even more difficult for you.  I can’t imagine.  Teenagers say awful things to their parents in the best of times.  Many are strongly affected by hormones that act on their brains in ways that are similar to WD.  Try, if you can, to think of that when you feel hurt.  She is not herself, she’s not in control of herself, and she is in a great deal of pain as are you.  Instead of being supported through her father’s illness, she is being encouraged to blame you.  Maybe her words will hurt you less if you think of her as like a five year old who doesn’t realize what she’s doing - a five year who is not being taught to be nice.  It’s not quite the same, but it’s close.  Some five year olds may have more capacity for compassion.
 

You are not to blame.  I know this because there was absolutely no way for me to “do better” when I was deeply affected by WD.  I tried, and I tried and I tried.  I couldn’t even cook.  I had to keep trying, but I succeeded only when my brain had healed enough to allow that.  Having a job was out of the question.  What wanted to do for myself or others had no bearing on what I could do.

 

I hope things are going all right between you and your mother.  Perhaps you have a greater appreciation for her now that you have been a parent.  She must love you very much and find it hard to see you suffer.  Everyone has deep feelings they may not show.  This condition is so perplexing to anyone who has not experienced it.  Perhaps this is a chance to reconnect with her and repair any hurt you may have caused as a teenager.  You might look at it that way.
 

What you worked for is just that — what you worked for and achieved, Alan.  You raised your daughter to 17.  You get credit for that!  It’s hard to think of the positive — how lucky she is that you made it this far.  In the last 25 years that you took ADs, this tragedy could have befallen you at any time.  She could have been 5 or 10.  My daughter was 6 when things were very bad for me.  That yours is 17 makes her success in life all the more likely, and you made that possible.  Don’t sell yourself short.  
 

I’m sure this situation is no fun for her.  Her reaction is heartbreaking.  It’s natural for you to feel hurt.  What you do with those feelings is what is important.  Yes, you are Eeyore at the moment.  “The sky has fallen.  Always knew it would.”  There are certainly worse things to be!
You may need to disengage sometimes, and that’s ok.  

 

Calling her while you have a window may not be the best thing for you.  Hearing her say hurtful things is not necessary at that time.  You could write her a letter, perhaps.  Leave her a trail of breadcrumbs to find her way back.  Remember, the opposite of love is indifference.  She is not indifferent.  She’s angry; she’s confused.  She’s getting the wrong signals from someone else.  Indifferent people do not say hurtful things.  They ignore us completely.
 

When you have windows, you should be careful to allow some sense of normal emotion to seep in.  Don’t try to make up for lost time and then get stressed.  Just feel the difference between wave and window.  You should “Enjoy” the window because you need it to heal.  It’s hard to really enjoy anything during WD, so what I mean is let yourself be in the window.  Whatever you do while you are there, simply let yourself feel different than during the wave with no judgment about whether you feel “better.”   
 

Eventually, you will feel more positive emotions.  You may remember happier times.  Remembering happiness is the closest thing to happiness we may get, at times, because of the carnage this syndrome creates.  Let yourself feel that happiness as it will help your brain get back to normal.

Your daughter will slowly become an adult with an adult brain, and she will start to understand.  Having had you show you love her all that time will make a difference.  Maybe you can send her a card or a small gift here or there just to let her know you still care.  Keep copies of your writings inside the cards — a photo on your phone perhaps. The question she has is do you care?  It must seem absurd to you, right?  
These actions are not for today — they are so that she will remember that you made these effort to show love and concern for her.  Tokens can mean a lot.  You might even find out that she kept them.

 

You have been a part of her life since the beginning, and nothing can ever change that.  Children love their parents no matter the circumstances.  She’s far too old for anyone to turn her against you. The effort on your part to stay in touch will be appreciated someday.  I know it will be hard in the face of her rejection of you, but I suspect she’s testing you, and you don’t have to do much to meet the test.  Just don’t disappear.

 

Your mind will recover.  I know this because I am largely recovered, mentally, at least.  Physical recovery, I think will take longer, and it’s going to take work.  I need energy for that, so I have to wait.  But your mind will recover, and you will be able to work again.  When you can work again, you can try to give your daughter something material that helps her.  For now, she needs to see you made an effort to show her love.

 

Rosetta

Hi Rosetta

 

thank you for your well thought out advice and the time you have given to me to write it.

 

i was too emotional yesterday to respond, I know everything you say is true and good advice. I’m just in some kind of denial as I can’t comprehend the enormity of it yet and just don’t feel like I’m strong enough to deal with the big picture regarding the situation at present. I know I can save your message and refer back to it time to time which should help me a lot.

 

thank you 

 

[Altostrata]

Yes, polyuria can cause electrolyte abnormalities.