Distraut: asking how can I help my son, akrontes?

[Altostrata]

Without Akrontes here, we can't identify his symptoms or where they might be coming from. What are these body pains, where do they occur? When did they start?

 

"OCD" is a very general term. What is the content of these distressing thoughts? Did he have this habit of mind before going on any drugs prior to 2002? Has he ever worked with a psychotherapist or other coach on managing them?

 

Akrontes has a very long history of being "in the system", possibly by error. People who have long, tormented histories with psychiatry sometimes become fearful and angry because of their treatment. This is also something a psychotherapist might be able to help with.

 

Lastly, he may have actual neurological variability causing him to "hear voices" or other odd symptoms. Does he identify with this? He might be confused or frightened by it. See https://www.hearing-voices.org

 

 

[akrontes]

Hi sorry for the late reply. I have severe headaches quite regularly. I don’t know best how to describe the pains, but they often end up as full blown headaches.  I constantly feel some sort of sensation in my head, often as if I “can’t breathe”. Right now I have one of these headaches, it starts off with the sensations and then can get worse and become very painful. I have got very used to this for a long time now. I don’t know best how to describe these symptoms but I am pretty sure it is not just a “normal” kind of suffering headaches and is very much connected to the mental sensations etc. I can’t quite remember when they started and I think they could have been with me the whole time during withdrawal. I think I suffered unusually frequently from headaches even when I was younger but this is quite different I think. 
 

The content of the “ocd” has varied greatly and has changed throughout the years. One thing which I mention to people, but have great difficulty in explaining and finding ANYONE with anything similar is these “words” (which I think you have referred to here as voices) which came on at more or less a precise moment during my second paroxetine withdrawal in 2010. This is what I try to explain to people, and I think that this also connects to my head pains, that there was a real shift in that withdrawal that I have never recovered from and lived with ever since on and off the medication. 
 

In these years I have seen many therapists , in particular cbt therapists which I haven’t felt have helped things much. Before Christmas I had started seeing a psychotherapist and it helped slightly with some things, but didn’t really help with any of these symptoms. I was also managing to work part time. 
 

Thank you for your messages. Thanks can maybe try and explain things better in another post.

It is difficult to explain but even though things are still so difficult and painful after nearly 5 years off medication, there is also a lot which has improved. 

[ChessieCat]

27 minutes ago, akrontes said:

there is also a lot which has improved. 

 

Please tell us more about what has improved.

[akrontes]

My sleep has probably improved. I am able to deal with stuff better. I have been able to work aswell. I think I can deal with some obsessions better. I have lost weight. 
 

I think generally people on the outside would think I seem a lot better aswell. 

I hope that explains a bit. Thanks

 

[weemie]

I hope you're doing well akrontes. I too have these "words" in my head which I also describe as a sort of mental tourettes. I won't label it as one thing but but it was med induced for me as well and I'm aware of at least ten others who also have this word "rumination", you are certainly not alone.

[akrontes]

Hi just wanted to update. I have been over 6 years off sertraline now, and 5 years off mirtazapine ( short spell and quick taper). Unfortunately I have not been doing well at all. My anxiety is still seriously severe, my obsessions and compulsions aswell. These words in my head that also constantly affect my jaw seem to have got worse. I have managed to “fight back” a bit this evening and be a bit more composed. Things in my outside life have been deteriorating, friendships for example, I think in part due to my mental state and obsesssion and compulsions. Earlier on this year maybe during a better period, I think I attempted to allow these words to come more, and maybe found some relief in that, but the words still persisted and were at best extremely bothersome. The logic of cbt is that the more you allow this stuff to come and the less you fear it, the less intense it should be and maybe fade away. This has not happened for me. Unfortunately it has nearly come back stronger , with a vengeance. Also maybe I have lost some of my coping mechanisms that I had before. I can go more in to detail if anyone is interested. 
 

It is slightly therapeutic to be writing. I barely write at all now, and still have enormous difficult reading, and it is not just the concentration, it is all these words in my head that disturb, and also reading or the concept of reading nearly terrorises me. 
 

Just to explain about the words a bit more. When I say words in my head, I do mean my head but I also kind of mean from my mouth. This affliction started nearly 12 years ago during my second paroxetine withdrawal. I had already been experiencing for a few weeks “psychotic like symptoms” and I guess serious ocd, stuff that was unknown to me before then, thinking I was doing stuff I wasn’t doing etc.  Basically from one moment to the next I had a phrase which disturbed me and I thought I could be speaking out aloud. I cannot explain how much it terrorised me. But basically I spent about the next 6 years constantly trying to stop myself from blurting out, and more and more phrases and more horrible phrases were coming to my mind. I think I nearly suppressed it so much that after about 6 years I was worrying less about blurting out aloud but then it morphed into worrying about these words coming out in my head, which is probably even more of a torment. 
 

I suffer severe pains and get really bad headaches. I don’t feel like I am breathing properly either. 
 

I could write a lot more if it is of interest. 
 

Thank you. 

[weemie]

have you looked into any of Dr. Michael Greenberg's work (https://drmichaeljgreenberg.com/articles/)? if what you're experiencing is something OCD adjacent, these articles could be of some help to you. the article titled "how to stop paying attention" may be relevant. Also, I found reading into the default mode network to be helpful. Meditation has been proven to reduce hyperactivity in the DMN. I only recommend this because I feel like I relate to your symptoms, but maybe I'm misunderstanding what you're going through. just some stuff to look into. I wish you the best.

[akrontes]

Thank you Weemie. Hope you are doing well.

[akrontes]

I am really not doing well after nearly 6 years off medication. I’m not sure really what I am asking but things have got really bad recently. The ocd has just become something I could not have even imagined. The words are even more tormenting. I really can’t explain this phenomenon. It has been with me for nearly 13 years. It started with a worry about blurting out, and then I was clenching my jaw for years trying not to blurt out and then it morphed in to something internal terrorising go me ever since. I had one year after the first two years of withdrawal where I was doing better and it has just deteriorated in the last 4 years and got really bad in the last year. I think this thing with the words is really abnormal and I can’t explain it to anyone. My jaw is clenching up and my I don’t think I am breathing properly most of the time. I just cannot explain 1% of what is going on. It is not just these things I have mentioned. It has not all been bad. It is extremely difficult to explain but it some ways I manage to do more thing than in the first couple of years. I usually sleep at night and am up in the day. I am able to socialise although with some people I really struggle. I travel, I was working but am practically not  able anymore. One of things which has got worse probably after the first few years of withdrawal is the obsession and compulsions which now seem to affect possibly very thought, even movement. My body goes into meltdown a lot of the time. When I am slightly calmer I manage to contain everything more. Also I have serious head pains and sensations which seem to correspond with how I am feeling. It can be different pains and sensations in different areas, like something moving around in my head. I notice that if I put a bit of pressure on the top of my head it can relieve momentarily the symptoms. Also sometimes it feels like everything transfer to the top of the head like electricity. Lots of tension and sensations and pain. The sometimes it calms down. Also sometimes after being in a tormented state for hours even days something “loosens” and I can even have fits of laughter after just having screaming minutes before. Up until about a few months ago I was still having kind of windows which may last for about 10 days at most usually. I would really try to “push” in those times but every time after a few days or a week these words etc would drag me down. Also, when I say these words the seem to also be something physical, nearly if the words weren’t there it I think it would nearly be as much of a torment. That’s why I think this is just really a peculiar ailment in my brain which I don’t know if even fits the condition of ocd.

[Distraut]

It is so upsetting and demoralizing seeing my son Akrontes going through such mental and physical torment after so many years.  Is this something that has happened to others going through withdrawal?  I know recovery is not linear, but I was not expecting this decline.  He thinks he will never recover from this horrendous OCD. 

 

I would so appreciate some information about this .  Many thanks in advance.

[Distraut]

I would be grateful for some advice.  Am I doing the right thing in telling my son Akrontes to hang on in there as he WILL recover and that these symptoms will fade even though his torment seems to be getting worse?  We are both so exhausted with it all.

[Distraut]

Bump

[SunnyRainyDays]

Dear @Distraut, I have read hours on these forums, and I’ve seen cases where some recovered for 8-12 or more years, but it hasn’t to be the case here. It might be already over in a few months, withdrawal is extremely unpredictable. It’s that unpredictable that something that is present today might be completely gone tomorrow.

I’m a little over one year off Mirtazapine (that I’ve only taken two months) and I feel much worse than a half year ago - especially the last weeks have been hell; but Mirtazapine is a hellish drug to withdraw from, as I’ve seen with many others too. It’s one of those that causes most problems.

I have also seen stories of people who only started to see any improvement after 4-6 years. It is very sad but tragically very real. They have recovered though, and that gives so many here hope for a better day in the future. I and many others understand when it feels like the torment is eternal and it will never stop. It does stop; but the waiting might be very long. Past history with various drugs might make it worse.

OCD is very common during withdrawal, I experience it too with varying degrees. Even symptoms like homicidal urges etc. are also normal, even if symptoms like this feel scary and unnormal.

I think you are doing the right thing. Support and the will to fight are most important during withdrawal, especially in the difficult phases of it. It is especially important to feel that you have something to live and recover for. Your son is very strong for keeping fighting after so many years; he has 6 years behind him, it might be not much longer until dawn.

I wish you both the best, and your son many windows and asap improvement.

[Rosetta]

Akrontes,

 

The short is yes, it is worth it to wait.  My situation is probably different in many ways.  I never took mirtazapine.  The recurring intrusive thoughts will go away eventually.  I believe that.  I still have intrusive thoughts, but they do not upset me now.  It’s pretty rare that a thought is disturbing.  Once in a while, I may speak when I did not intend to.  Most of the time, I could catch it and stop it if I wanted to.  It’s only when I am in a place where I feel safe or when I’m with someone with whom I feel safe that I speak accidentally.  I might say something odd, but it’s not offensive.  
 

The pains and muscle spasms must be very concerning.  Dystonia might have a mental component.  I do not understand it at all, but after having dystonia all these years, I am convinced that my mental state is affected at the same time I have dystonia.  Cause or effect - I have no idea.  
 

I think that you will continue to improve.  There have been some moments when I thought I was getting worse.  I never worry that anyone will notice me.  I feel that I can make plans and follow through most of the time.  
 

I’m 7 years out. Correction 6 years out.  I had a rough Spring this year, but it was nothing — nothing— like being in the thick of WD or even at 3 years out.  Now, in late May, I feel that that is over.  I am amazed that I am still dealing with this, and yet, it’s so much better.  
 

I’m really sorry this happened to you.  You say it’s not all bad.  That is great news.  There was a time for me when it was all bad, all the time.  From my perspective, the fact that you are still here after 6 years drug free is a good reason to keep going.  You have a lot of the misery behind you.  You will have times when things seem to be worse.  That is really hard to endure, I know.  I do not believe very many people will stay sick.  The brain will change.  That it changes for the worse along the way is very rough.  I hope you are journaling so that you can look back on good times.  You may not remember them if you do not journal.

 

Hang in there.  You can do this.

 

🧚‍♀️Rosetta
 

(You are not drinking alcohol or using any drugs, I hope.  You simply cannot do that or you will not get well.  If you make that mistake, you will heal.  You will be sick longer, but you will heal.)

 

 

 

 

[akrontes]

Thank you so much for your kind and helpful replies. I will try and reply properly soon. 

[Distraut]

I too am very grateful to SunnyRainyDays and Rosetta for their encouraging words and wish them both well in their recoveries.

[Rosetta]

You are welcome!

[Distraut]

It is now 6 years 3 months since Akrontes took his last small dose of Remeron and yet his condition seems to be deteriorating day by day.  He is tormented all his waking hours with intrusive thoughts and OCD and is very distressed.  He had better periods during the last years and at times was able to work, but this has not been the case during the last few months and he is cutting himself off from social contact.

I don't know what to do to help him or what to recommend.  I am still hopeful that his current horrible state is still withdrawal and that it will sort itself out, but he does not believe that and we both become more demoralized as the days pass.

Should be not be feeling better after such a long time off?  Is there anything else I can do? 

 

[Distraut]

e.g. see a Neurogist?  I would hate to be missing something!

[Rosetta]

Distraut,

 

I’m so sorry that Akrontes is struggling.

 

For me, there have been some rough times many years post zero/post CT.  This past Spring, I was feeling worse for several months.  I firmly believe that it was a normal part of this recovery, and that belief helps me.  My husband believes it, too, so I am sure that helps.  If he were pushing me to try drugs, I might be feeling much worse.

I attribute the continued issues to how incredibly destabilized my nervous system was after many years of drug changes, dosage increases, and missed doses.  My brain keeps making changes and each one has the potential for further destabilization.  
 

Some people may have a hard time with the change in light in the Spring.  I believe I do.  Other people may have trouble in the Fall?  

 

I’m sorry to hear that Akrontes does not believe his condition is a normal part of recovery, but that does not surprise me at 6 years.  I quit ADs in 2017, so I am at 6 years post CT also.  I understand that it seems hard to believe that windows and waves could be a recovery pattern.  I firmly believe it is, based on the number of people I see reporting that pattern on SA.  Perhaps Akrontes would read some of the Success Stories?  
 

Even if I did not believe in this recovery pattern, I am more than certain that any additional drugs would be harmful to me.  I would rather be as I am right now than see any significant decline.  As you may know, I had akathisia, and I will never risk going back to that.

 

It is possible that the fact that I have responsibilities to other people have helped me recover because I go out to a walk, I try to think positively, and I have a lot to look forward to.  Perhaps Akrontes needs something to do?  Something he could feel proud of?  An art class, learning to play an instrument, learning a language?  Those things help the brain heal, in my opinion.  Learning to draw or paint.  There are many free resources on the internet.  Does he like video games?  Even putting together Lego sets might be helpful.  They can be frustrating, but the brain changes when a person is frustrated.

 

I hope he feels better soon.  I continue to improve all the time.  I’m very happy that I am able to weather the rough times with the knowledge that I have done the right thing to allow myself to heal.

 

Rosetta

 

[Distraut]

Dear Rosetta

Once again I take comfort from your reassuring words and practical, helpful insights on the nature of recovery, both directed to us and to other suffers on this site.  You are an angel.

I wish Akrontes would take more heed of all the information on SA but he finds it hard to read anything right now and has become increasingly more pessimistic about an eventual recovery and is giving up hope, even having SI.  Lately he is having more regular meltdowns which are very distressing for both of us.  The brain chatter is relentless and overwhelming and I have not found other suffers with similar OCD symptoms.  From time to time however, he will dissolve into hysterical laughter.  It is very bizarre.

I hope he may post something himself soon.

Thank you!

[Distraut]

This June it will be seven years since my son Akrontes took his last small dose of Mirtazapine but I am unhappy to report that he seems to be getting worse rather than better.  He is tormented all his waking hours with OCD and intrusive thoughts and life for both of us is very difficult right now.  I try and protect him from psychiatrists but wonder whether his OCD will become a permanent part of his life.  He sees no future and just doesn't want to be here.  He even blames me for finding this site and discovering withdrawal syndrome.   I don't know what to do for the best or if I am failing him in some way.  I just don't know the best way to deal with his irrational thoughts or understand why such trivial things can have such a negative effect on his mood and often we both end up getting angry and frustrated.

 

I would welcome any advice as to how to best to carry on.

 

Thank you so much,