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Rosetta

Rosetta: CT May 2011 and too fast taper Feb 2017

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Rosetta

Hi @Elyssa143 I’m so sorry you are going through this.  Your body is constantly producing the substance — think of it as a hormone — that tells you to be afraid, and your mind is trying to make sense of that.  That’s why you keep thinking over and over all those thoughts.  Your mind is trying to work out a solution.  It is torturous, I know.   is the only way to get some relief until there will come a day when the hormone is produced only in times of real need instead of for no reason at all.  You just have to hang on.  You can see it’s getting better.  That is wonderful.  Hold on to that.

 

I’m doing ok.  I’m very, very sad about my cat.  I hate myself for letting something happen to her.  But I managed to grocery shop, cook dinner and let my daughter have friend over in my messy house.  I could not have done that before.  It was very uncomfortable to have another child here, but I managed and when she went home I chopped onions, made guacamole and put together 7 layer dip.  It’s seems so simple, but that was a terrible challenge for me before.  I would have burned the meat, cut myself and ended up on the floor in tears.  Instead, it all went fine tonight.  It is such a relief to have the ability to just cook dinner!!

 

Thinking of you.  You will be ok.  Trust me. I made it through, and you will, too.  Just hang on!

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Rosetta

Update:  In one month it will be 3 years since I CT’d Zoloft, Xanax, and, Trazodone.

 

Three years!!  Positive: I feel sane again!! Looking back, I’ve been reliably sane quite a while now — maybe six months I’ve been completely free of all traces of DP and DR except upon awakening the night.  That continues to feel surreal, but it’s mildly surreal (if feeling deeply depressed upon awakening in the night in a way one does not feel during the day can be considered sane.).  In the daytime, I am me again!

 

Positive: I don’t anger easily any longer!  What a relief.  Bad things happen, and I feel less.  I dropped and broke my phone’s screen this week.  I was upset, but I did not lose it the way I would have before.  I’m hoping the days of breaking down in tears over dropping and breaking things are almost over.  (Especially because I still have limited control over my right hand at times.)

 

Negative: The nights are still quite hard. I clench my jaw very strongly and often wake up over and over in pain.  At times, it’s not pain, but quite uncomfortable.  My neck, shoulders and chest are tight on both sides.  My right elbow is arthritic-ish.  It’s affected by the clenching somehow. This has become more painful in the past several months, and then sometimes it barely hurts at all.  Very odd.  Another muscular issue caused by ADWD.

 

Positive changes: (1) I’m not having night sweats right now.  Only in the last 1-2 months have those stopped.  That was an every night, 2-3 times per night, ordeal for probably the past year.  I still wake up, but the covers stay on.  (2) I don’t wake up terrified.  I feel awful on an emotional level - a bit scared, immensely sad, guilty, but the intense fear is not there.

 

Another postive: The energy my muscles receive or electrical signal - whatever allows me to move as I intend to most of the time — has returned!!  I don’t feel 80, I don’t act 80, I don’t move as if I’m 80 any longer.  I can walk as far as I need to almost every time, and I can walk at the pace I want to.  I can even walk fast!! That was impossible just 6 months ago except very rarely.

 

Negatives: (1) I still drop things with my right hand.  There’s an issue with strength or coordination there especially when I’m feeling anxious.  I’m still hoping there is no permanent damage on that side.  (2)  I continue to have issues with my right toes contracting, the muscle running down my shin bone on the outside contracting quite strongly and causing severe discomfort.  At the same time this is happening my right side chest and neck are contracting.  

 

The most troubling issue is that I’m quite depressed at the moment, but I can function at a low level despite that.  It’s easier to do everything now from an emotional standpoint.  Rarely do I feel that I can’t do what I need to do in the moment.

Sometimes I don’t want to get up in the morning, but I do anyway.  I can’t sleep past about 6:30 or 7.  Even if I just get my daughter ready for school and go to the couch at least I’m up.  

 

Being home is difficult.  The clutter is still here; the gargantuan task of sorting through it is still here; the fear of people seeing my house is still here.  It’s overwhelming, but seeing physical improvements gives me hope I can start to tackle it.  I’m hoping that on an emotional level I’ll be better equipped as well with less neuro-emotions and less cog-fog confusion to stop me from sorting.

 

I did leave the house this week.  I went out to dinner Wednesday and for coffee Thurs and Fri, and I lifted weights at the gym on Thurs.  I work the muscles that are contracting when I sleep at night.  Hopefully, if I keep doing that I will change what is happening in the night.  I’m not sure that possible, but it’s worth a shot.

 

I sum, there have been a lot of positive changes, and I know there will be more.

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thecowisback

wow - it's great to read about so many positive improvements!!! 🥰

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IWantToHeal

@Rosetta Your story is inspiring and your positivity has really helped me get out of an emotional slump. I'm so glad to hear that so many of your symptoms have improved.

 

I cold turkeyed myself from Zoloft about 5 months ago and can relate to a lot of the symptoms you've described., I noticed you mentioned that you had tardive dyskinesia in your original post. How does this manifest for you? And how have the symptoms improved over time? I am experiencing involuntary mouth movements and tongue movements with it and a weird twitch in my right eye. It doesn't happen all the time though. When I read information that says these effects can be permanent I get a little bit terrified to be honest.

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Elyssa143

@Rosetta

Hi💗

Thank you for being such a positive support! I know you have been through hell and still have lots healing to do! But your positive update is one many latch onto for hope, so thank you for that. You said in your recent update that your struggling with the depression, its chemical im assuming? Can you describe it? Is this new or something youve battled this whole time? Are the si, intrusive thoughts and si feelings pretty much non existent? Ive had some better days here for a few days and its been a blessing! Im able to get some sort of tiny good feeling when im with my kids or dogs. Able to look forward to the future but with that comes alot of fear of the symptoms intensifying and of course the awful feeling of not wanting to live and the horrible thoughts about life not being worth it. :( its torture to feel like you have a grasp on this and your life but be so scared of the symptoms youve been having and to be slammed back down again, but eventually it has to improve and not get as horrific again right? I mean the healing has to come. I am definitely "better" than 6 months ago but when im struggling its hard to see but deep down i believe i know it.  I just hope and pray the suicidal stuff dies down for me and stays that way here soon. I often wonder if we do get to a place that is more "comfortable " but yet still healing but we know it passes and we know our healing is coming but we our brains dont automatically go to the absolute worst? It has to right? I hope your weekend has been as pleasant as possible.  I am glad to see you are improving! Love and light💗

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Rosetta
4 hours ago, Elyssa143 said:

 

 

 eventually it has to improve and not get as horrific again right?

 

. I often wonder if we do get to a place that is more "comfortable " but yet still healing but we know it passes and we know our healing is coming but we our brains dont automatically go to the absolute worst? It has to right? I 

This is it!  I still have short moments of despair such as when I woke up with akathisia this morning, but they don’t last as long.  I don’t have SI.  I am so sick of this coming Back!! Yet, I’m going to do what I want to do today.  I don’t feel that I need to hide all day.  @Elyssa143

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Rosetta
10 hours ago, IWantToHeal said:

 

I cold turkeyed myself from Zoloft about 5 months ago and can relate to a lot of the symptoms you've described., I noticed you mentioned that you had tardive dyskinesia in your original post. How does this manifest for you? And how have the symptoms improved over time? I am experiencing involuntary mouth movements and tongue movements with it and a weird twitch in my right eye. It doesn't happen all the time though. When I read information that says these effects can be permanent I get a little bit terrified to be honest.

 

Not permanent.  My lay opinion is that doctors think it’s permanent because they make prescribing decisions that intensify this problem.  They cold switch drugs, they add drugs in doses that are too high, they CT people or they reduce by more than 10% per month (or at least by more than the person’s nervous system can handle.). Then they see the problem continue or worsen.  Well, of course!!!

 

This problem has been worse for me in the  past.  I used to have pain in my forearm and horrible headaches.  I used to have my tongue pressed up against the roof of my mouth even when I was awake and conscious of the problem.  I have regained more control and now it is only out of control when I sleep.  Not every moment I’m asleep, but a lot.  (This has affected my breathing for many years — 16 years or more.  You have no idea how angry I am that when I was diagnosed with sleep apnea in 2004 no one evaluated the affect Celexa was having on my body!!)

 

My eye is so much better.  No more twitching there.  I’m not sure it’s completely unaffected, but it’s rare that I feel anything unusual in my eye or my temple.  If I read I can feel something.  When I have my period I feel a tingle in the side of my face — sometimes.  I do not have the horrible headaches I used to have.  There is no more numbness!!! My nose and face and even my eye used to feel tingly and numb. (So did my forearm and fingers.) No more.  It slowly got better.   At one point it was only if I read and used my right hand to type that I felt tingles and numbness.  This is true now, too, but it’s better. This tells me that it will eventually go away.

 

Don’t panic if it gets worse before it gets better.  Doctors don’t know anything.  If it gets worse that means nothing.  Mine got worse after I CT.  Do not let that scare you.  You will heal.  These drugs have been handed out without so much as monitoring those on them for these side affects.  We were all guinea pigs.  There should be piles of research, spreadsheets and searchable databases and tons of people working on this for the past 30 years?  Nope!  There was no research before hundreds of thousands were all poisoned, and there is still very little research now.  SA is probably the best repository of the negative affects of these drugs and the prescribing practices that harm people.  “Anectodal” “not reliable” - “irrelevant” Hah!!! Well, it’s all we have because the pharmaceutical companies and the government have no interest in researching this enormous problem, do they?!!  It’s disgusting!  And there is my akathisia fueled rant for the day!

 

You will be fine as long as you are very careful.  Unless you reinstate with advice from a moderator here, stay off almost all drugs except OTC painkillers.  1. Don’t take anything psychotropic, 2. Never touch an antibiotic known for harming the brain - I can’t remember the name of those — floroquinine-something — there are several in the same family and one has the brand name Cipro for short.  You can look it up on SA. 3.  Avoid having your teeth fixed during the use of adrenaline based numbing agents.  There’s an alternative the dentist has.  Insist upon on it!!  Protect your fragile nervous system for several years.  4. No Xanax, no pills to calm you for medical procedures, 5. no colonoscopy drugs to make you forget it all (roofie type drug), 6. no elective surgeries. — the last thing your brain needs is to be anesthetized right now.  7. No street drugs, of course, 8. no alcohol, 9. no weed — you are too fragile to take the risk.  Treat yourself like a newborn baby. 9. I wouldn’t get a vaccine if I were you, either.  

 

I haven’t read your story, but have you considered reinstatement?  It could be too late, too risky, but depending on your circumstances . . . You should make an informed decision on that right away.  Ask a moderator for advice.  Don’t just read the topic here at SA and go it alone.  It can backfire, but it has also saved some people a lot of misery.

 

Goodluck, IWant!

 

-R

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IWantToHeal

@Rosetta Thank you for replying! I'm glad that the effects are not always permanent and that you were able to recover from the dyskinesia. I'm trying not to worry about it too much. For me it's a tension feeling in my jaw like it's always being clenched and sometimes my mouth opens and closes involuntarily and that has caused me to be self conscious because people who noticed it think I'm about to say something when I do it but it's just something that started while I was on the Sertraline and hasn't gone away since I discontinued. I really hope it eventually goes away. It doesn't happen all the time I've noticed only some of the time. Another effect I have is that occasionally both of my eyes widen. It turns my face into a shocked expression. It's really weird and distressing..

 

I've decided against reinstatement and I am going to just go forward with the withdrawal and hopefully things will get better with time. I'm angry that the drugs caused these issues in the first place and would rather not take my chances with any more pharmaceutical drugs as my trust in doctors has been completely eroded. I think it's a complete joke that these drugs are being handed out like candies when so many people have had horrific side effects.

 

I almost don't want to go the doctors at all about my symptoms because I don't feel I will be taken seriously and they will blame it on "depression" or a return of the "original condition". 

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Rosetta

IWanttoHeal, (I relied on your thread.)

 

Feeling ok this morning except for muscle tension and being tired.  Slept late.  That’s so rare.  The alarm woke me out of a deep sleep — to pain from muscle tension, but I went back to sleep and took the munchkin to school late.  Really rare to be able to do that.  I still have mild morning cortisol almost every morning around 6:30-7:00.  

 

I hope I’m not getting sick.  My daughter was very whiney all weekend.  I’m pretty sure she has a bug.  My husband feels it, too.  Yuck.  It’s better than severe anxiety though!!

 

I had some cramps in my intestines day before yesterday.  I think they were hormone related.  

 

My gut is much better these days.  Everything is operating well in there.  It’s such a relief.  I think being in Europe helped.  They have laws about what is in the food that we don’t have.  I suspect my gut healed quite a bit over the past several months.

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Elyssa143

@Rosetta

Hey! Sorry to see you werent feeling the best.  I sure hope everyone in your house hold feels better and the bug passes quickly!!!

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Icip

Hey Rosetta,

 

I hope you’re well, I’m so happy to read that you’re improving. With every ‘step’ comes an inch of relief.

 

I came to your post after searching a term for poor cognition or brain fog (I can’t remember the exact one hehe), but have been pleasantly surprised by your writing; it’s lovely!

I’m normally one to make light of a bad situation that I’m in, but you’ve made so without the need of jokes from the way in which you compose.

 

My head right now is feeling empty and rather dull compared to pre-one week of Zoloft, I’m terrified every waking second that I’ve damaged myself, or my inner voice will never be as loud; you’ve helped to quell these thoughts a little by injecting a little hapless optimism.

 

I wrote my intro after a month (I think) in withdrawal. It’s flat and somehow monotonous to read so for yours 10 months in w/d after 14 years of usage to be so pleasant to read (not pleasant circumstances at all) I hope you recognise your ability:)).

 

I want to go into journalism when I’m older, whilst my writing is returning somewhat slowly back to normal (still feels very alien from my old self), I hope to be able to achieve your level.

 

Thank you for the positivity, and ounce of relief,

 

Icip.

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Rosetta

Thank you @Icip  That is very kind of you

Rosetta

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Rosetta

It’s been a hard day.  Emotionally.  Physically less difficult.  I notice that it’s often either or.

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Sheera

@Rosetta I haven’t been on much but noticed you were back. I also noticed you are healing—slowly but surely. We are getting closer. You should be so proud of yourself in this journey. Look at all the things you’ve done—for yourself, your family, and so many visitors on this site. Slowly but surely your mind will be what it used to be. Physical ailments I can handle, my mind helps me deal with those. I need my mind 100% and you do too and it will happen!!  I’ve seen SO MUCH improvement in the last 6 weeks. Of course I’m waiting for the next wave to hit but I know I will get through it. I always have even though it’s been challenging. You are a warrior, Rosetta. Slow and steady—oh so slow. Hugs to you my friend. 
 

❤️❤️

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Guilietta

Hello Rosetta,

 

What good news to learn of your improvements over the past few months. The light at the end of the tunnel is not that of an oncoming train!

 

I hope you are adjusting to the routines here and don't miss t he classes and trips so much. Maybe you can take a  class here.

 

I am very sorry about your kitty. I know you must miss her terribly. Maybe you can give another kitty a loving home. I have a sweet little dog - he is 14. He can be a nuisance - but I couldn't imagine not having him. Sending positive thoughts to you and your kitty.

 

You are quite a good writer as @Icip said - I've mentioned long ago too - and so perceptive about this rotten situation. Research should have been happening for the past 30 years into this. 

 

Glad you are back and doing well.

 

Giulietta  ;)

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Carmie

Hi Rosetta, 

 

I’m so very happy that you’re seeing some improvements, that’s wonderful news. 
 

Sending hugs🤗

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Rosetta

@Sheera @Guilietta  @Carmie  Thanks for your posts.  It’s nice to see the messages.

 

This month I will post a “three years off the drugs” update!!!!  Here’s a preview.  In just a week it will be 3 years since I finished a “taper” (what I THought was a taper!).  It was a CT, of course.  I tried to properly taper 150 mg of Zoloft from December of 2015 through February of 2016.  (Oh, how wrong I was about tapering this trash.)  I also quit occasional use of Xanax (as needed) all of which resulted in a prescription for Trazodone that I took for several weeks before my husband discovered it was an antidepressant.  I quit Trazodone CT, too.

 

At the moment, I’m still feeling down a fair amount, but I am not prevented from doing what I need to do day to day very often.  That’s amazing.   I don’t post much  because I don’t feel that I have much that is positive to say, and that’s simply not true.  There is some anhedonia, and there are depressive symptoms still hanging around. Honestly, it’s not terrible.  It’s really not.  There is no SI.  The anxiety is manageable.  I have to remind myself how much I have healed because I want to be living life at 100 mph, and I can’t.  I want to clear out the clutter and invite people over, but I can’t just yet.  So, I think I’m feeling some sadness over that.

 

I take for granted that I am “saved” sometimes.  I am saved — my life has been saved by this website.  Knowing that the constant anxiety — that the akathisia — would someday disappear saved my life!!  Thank you, Altostrata, Jan Carol, Gridley, and so many other moderators who sheparded me through the last 2 1/2 years.  You save lives everyday.  THANK YOU!!

 

The last 2 days I had muscle tension in my LEFT shoulder and neck.  It came and went.  It’s worse near bedtime.  I used ibuprofen and heat.  My right leg is still cramping some — my toes — my calf.  Off and on dystonia.  It tracks with ovulation and menses.  It’s lovely to be allergic to one’s own hormones, isn’t it?  I’m still having issue with my tongue pressed against the roof of my mouth while I sleep. I’m using a CPAP machine.  I wake up with a headache if I don’t.

 

Hang in there, everyone.  You will get your life back even if you CT’d, but DON’T CT whatever you do if you are still on the drugs.  Waaay too risky.

 

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Gridley
17 minutes ago, Rosetta said:

THANK YOU!!

Thank YOU for this great update, Rosetta.  You have truly turned the corner.  I am thrilled for you.  I know you still have some issues, but, really, you sound like a new person.

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Carmie

What a fabulous update Rosetta🧡

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Frogie
1 hour ago, Rosetta said:

@Sheera @Guilietta  @Carmie  Thanks for your posts.  It’s nice to see the messages.

 

This month I will post a “three years off the drugs” update!!!!  Here’s a preview.  In just a week it will be 3 years since I finished a “taper” (what I THought was a taper!).  It was a CT, of course.  I tried to properly taper 150 mg of Zoloft from December of 2015 through February of 2016.  (Oh, how wrong I was about tapering this trash.)  I also quit occasional use of Xanax (as needed) all of which resulted in a prescription for Trazodone that I took for several weeks before my husband discovered it was an antidepressant.  I quit Trazodone CT, too.

 

At the moment, I’m still feeling down a fair amount, but I am not prevented from doing what I need to do day to day very often.  That’s amazing.   I don’t post much  because I don’t feel that I have much that is positive to say, and that’s simply not true.  There is some anhedonia, and there are depressive symptoms still hanging around. Honestly, it’s not terrible.  It’s really not.  There is no SI.  The anxiety is manageable.  I have to remind myself how much I have healed because I want to be living life at 100 mph, and I can’t.  I want to clear out the clutter and invite people over, but I can’t just yet.  So, I think I’m feeling some sadness over that.

 

I take for granted that I am “saved” sometimes.  I am saved — my life has been saved by this website.  Knowing that the constant anxiety — that the akathisia — would someday disappear saved my life!!  Thank you, Altostrata, Jan Carol, Gridley, and so many other moderators who sheparded me through the last 2 1/2 years.  You save lives everyday.  THANK YOU!!

 

The last 2 days I had muscle tension in my LEFT shoulder and neck.  It came and went.  It’s worse near bedtime.  I used ibuprofen and heat.  My right leg is still cramping some — my toes — my calf.  Off and on dystonia.  It tracks with ovulation and menses.  It’s lovely to be allergic to one’s own hormones, isn’t it?  I’m still having issue with my tongue pressed against the roof of my mouth while I sleep. I’m using a CPAP machine.  I wake up with a headache if I don’t.

 

Hang in there, everyone.  You will get your life back even if you CT’d, but DON’T CT whatever you do if you are still on the drugs.  Waaay too risky.

 

That’s  a wonderful update Rosetta.

 

 I’m very happy you are healing and moving on in the world. It was nice reading about you adventure to a foreign country while in WD also. You did an amazing job there😊

 

Take care,

 Frogie xx

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Guilietta
1 hour ago, Rosetta said:

You will get your life back

 

Hello Rosetta,

 

Thank you for your everpresent encouragement - directly - and indirectly with your accounts of how you are coming along.  I am glad to see a summary of your journey. That you were able to live abroad - with family or alone - is a feat.

 

So pleased you have turned a corner even though you have some bugaboos handing around.

 

Hugs,

Giulietta

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Elyssa143

@Rosetta

What a wonderful update and so well written! I am so glad to see you have turned a corner! I understand you still struggle a bit but im sure the next year will bring tons more healing youve come so far. I am "healing" and its not hell everyday like it was before. But i still struggle very much. May i ask what the si is for you? I get the awful intrusive thoughts (suicidal) but then i also get this feeling of life not being worth the struggle and "wanting to die" (chemical) it still scares me. But of course living like this even much more functional is quite a struggle still. I see u say your still down but its not horrible did your akasthsia go away? I really just hope the suicidal thoughts and feelings go away here soon ill be 2 years next month and of course my brain has always tortured me of never making it or being the one person who never gets better or that something else is going on. Looking forward to heariing back! I sure hope your still doijg well. 

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Rosetta

@Elyssa143  I know it’s really awful.  I saw that you posted something about mental akathisia.  Yep.  That seems like an appropriate name for it.  If doctors think aka has to be physical and a person has to be walking up and down the room constantly they are mistaken.  It has a very strong mental component I think.  Or if someone wants to come up with a new name for the mental part, fine.  The name mental aka works for me.  It’s Hell.  

 

The SI is the worst part.  Mine was just like yours.  Intrusive.  My brain tried to make sense of it — to come up with reasons for why I felt it.  If a feeling is that strong it must have a reason, right?  Wrong.  Now that I have perspective I think of it like a hallucination.  There’s no reason for it.  The brain is thinking on its own.  Just as the eyes don’t see apparitions and the ears don’t hear voices there is no reason for your SI except for the fact that the brain is malfunctioning.  Yes, of course, you feel terrible, your brain is torturing you in other ways, and maybe, most likely, you have physical issues from WD, too, but would they be, on their own, enough for SI? Probably not.  At least not as often.  Thank god it WILL go away!!!

 

Notice that I said my SI WAS.  It’s gone, and if it comes back I’ll stare it down again! I know it will go away.  I suppose you have heard of Stuart Dolin.  His wife is an activist now that he died because of akathisia.  Doctors die of it, too.  But remember you KNOW about it.  Those doctors didn’t!  Isn’t that shocking?!  They didn’t know it was medication induced.  They didn’t know it could continue after cessation of the medication nor that it will resolve.  That’s, in my opinion, what killed them.  They didn’t know that the nervous system must be treated very gently in order to recover and to avoid exacerbating the condition, either.  No new drugs.  They think they should try new drugs until one “works” (differential diagnosis such as on “House”).  That is exactly the wrong thing to use.  Differential diagnosis kills patients.  They don’t know that.  We do!!  We can protect ourselves now.

 

My experience was that knowing helped enormously.  SA tells us it will resolve.  Not when, of course.  No one can say.  The fact that you are seeing improvement means you are in the right course.  You will be very close to the last day of SI without having any idea that is true.  You will notice after several weeks that it has not occurred in a while.  Then it will come back and go away again.  Just like all WD symptoms.  One day, like me, you will say “Oh, it’s been a couple of months!  It’s true.  It’s going away!!”

 

I’m not saying it’s easy to live through but you can endure it, Elyssa.  It’s very hard.  No doubt.  My best advice: Distract yourself.  Watch tv or read or walk.  Walking is really the best.  Walking doesn’t only distract you.  It helps the nervous system heal.  If you have support, and you do, you are going to have an easier time.  A safe place to live, food, clothing, warmth . . . that’s all you need along with the knowledge to avoid increasing the disruption to your nervous system.  

 

We are the lucky ones because we found this website — because someone made this website and maintains it.  You will heal.  You just have to distract yourself from the aka, take it day by day, hour by hour, if necessary, until it slowly lessens.  I rarely have it, and if I do it’s very manageable.  It doesn’t involve SI now. I’m prepared that that could come back, but I know it will go away again.  That will be true for you someday.

 

The people who try a lot different things - supplements, new meds, changing dosages, missing doses, doubling up doses, that sort of thing — they don’t seem to do well.  You can’t miss a dose because you don’t take meds.   That’s cold comfort for a person who CT’d but still — it’s one less thing to try to manage in our state of being.  

 

Hang in there!! - 💖Rosetta

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Rosetta

I’m feeling sad.  I just lost my girl cat last month.  She disappeared while we were out of town.  The house sitter wasn’t her fav person, but I think she died.  It’s really hard, and my daughter is struggling with it.  I lost my 16 year old cat about a year before this cat showed up in my doorstep.  Eight months of diabetes treatment followed by pancreatic cancer.  He was my child.  I still long for him.  I miss this girl a lot, too.  It’s different, but still painful.  Not knowing is hard, but she couldn’t live inside.  Now I wish I had made her live inside, but she wouldn’t use a litter box.  She used clothes or blankets.  I couldn’t deal with that in WD.  I’m feeling really guilty, but I know I did the best I could.  I miss her.

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Gridley
1 minute ago, Rosetta said:

 I miss her.

My heart goes out to you, Rosetta.  It is very hard.  You fought and fought for your little boy, and I know he was aware of it and was grateful.  It's hard not knowing with your little girl.  You literally did the best you could being in terrible WD.  I remember your condition at the time.  Please forgive yourself.  She would want you to.

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Rosetta

Thank you, @Gridley.  I was very sick, but it’s hard.  Thanks for the kind words.

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Rosetta

Well, I had a terrible day.  I had no appetite to the point that food seemed disgusting.  So, more than no appetite.  Some kind of very intense anxiety about food.  The usual family dynamic that is quite dysfunctional in my husband’s family reared it’s ugly head, I handled it poorly and now I feel that life itself is completely and utterly worthless.  So much for no SI.  

 

This ordeal with WD has taken its toll on my relationship with my husband.  It is clear that he is very resentful and angry.  He said something very hurtful today.   I’m not even sure what to think.  I’m doing the best I can which isn’t very well.  I should have stayed home today.

 

I really can’t brush off an argument the way people who had real siblings and real parents can.  I don’t think my husband can understand this fully.  Maybe he simply can’t get it.  

 

He thinks I should be able to accept that he will make these mistakes under intense pressure.  He says he’s human.  Why do I hurt from his words forever?  I guess he really does recover more quickly.  He recovers.  I don’t.  I can’t handle these experiences.  They stay with me a very long time.  They really never go away.  I feel under threat.  I fear abandonment.  That makes him angry.   He takes it personally that I have abandonment issues.  He says that after 24 years he’s proved himself to me.  

 

Today as was a simple misunderstanding.  — cascade of misunderstandings and odd coincidences.  I got very angry and assumed people knew things they didn’t.  But the end result was out of proportion as usual.  The years and years of anxiety induced anger on my part has made it such that our arguments get very heated.  He says things that he doesn’t mean.  Then he’s shocked that I take it so hard because he says I have said horrible things to him and he forgives me.  The difference is that he is more secure than I am, and he’s not alone in the world without me.  Having a mother who has loved him unconditionally makes a big difference. 

 

I feel very alone.

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Guilietta

Dear Rosetta

 

I am heartbroken about the miserable day you had today and your feelings of being alone. I will write a thoughtful message shortly but saw  your message and wanted to let you know I am thinking of you and know exactly how you feel.

 

I have to handle a dysfunctional dynamic at home now before it becomes an issue - it's often like walking on eggshells here.

 

Big hug.

 

Giulietta

 

 

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Guilietta

Hi Rosetta

 

I have the same feelings about handling (or not) the types of situations you experience as well. It is painful. I am sorry you had a lousy day. I tried to put some thoughts down below after giving this a lot of thought and time. [I'm a slow thinker! 😉 ]

 

13 hours ago, Rosetta said:

Why do I hurt from his words forever?  I guess he really does recover more quickly.  He recovers.  I don’t.  I can’t handle these experiences.  They stay with me a very long time.  They really never go away.  I

 

This is a good question and one I would like an answer to as well.  These issues are everpresent in my life. I am not married -  I stopped dating because I could not handle the experiences you mention. I am now in my 50s.

 

I don't know why you (and I an do thers)  can't let go of the hurt (suffering?) and what to do about it.   I feel misunderstood and wronged by  remarks of people whose love and approval I need - a pattern since childhood. They  don't know that things are hard for me (then and now) even though as you said  I am doing my best to do the right thing  in a difficult situation - and that I only mean well.  It is frustrating and I end up thinking badly of myself - even though I should be kind and compassionate and loving to myself.   I hope you can be. 😉

 

Learning self-love and self-compassion as an adult is difficult when you didn't  feel loved - at least in a way you wanted or could understand - as a child. I know this to be true.

 

Big hug. I hope you have a happier day tomorrow, Rosetta.

 

G.

 

 

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Rosetta

Thank you, @Guilietta  That was very kind.

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Snorky
On 2/13/2020 at 5:38 PM, Rosetta said:

@Elyssa143  I know it’s really awful.  I saw that you posted something about mental akathisia.  Yep.  That seems like an appropriate name for it.  If doctors think aka has to be physical and a person has to be walking up and down the room constantly they are mistaken.  It has a very strong mental component I think.  Or if someone wants to come up with a new name for the mental part, fine.  The name mental aka works for me.  It’s Hell.  

 

The SI is the worst part.  Mine was just like yours.  Intrusive.  My brain tried to make sense of it — to come up with reasons for why I felt it.  If a feeling is that strong it must have a reason, right?  Wrong.  Now that I have perspective I think of it like a hallucination.  There’s no reason for it.  The brain is thinking on its own.  Just as the eyes don’t see apparitions and the ears don’t hear voices there is no reason for your SI except for the fact that the brain is malfunctioning.  Yes, of course, you feel terrible, your brain is torturing you in other ways, and maybe, most likely, you have physical issues from WD, too, but would they be, on their own, enough for SI? Probably not.  At least not as often.  Thank god it WILL go away!!!

 

Notice that I said my SI WAS.  It’s gone, and if it comes back I’ll stare it down again! I know it will go away.  I suppose you have heard of Stuart Dolin.  His wife is an activist now that he died because of akathisia.  Doctors die of it, too.  But remember you KNOW about it.  Those doctors didn’t!  Isn’t that shocking?!  They didn’t know it was medication induced.  They didn’t know it could continue after cessation of the medication nor that it will resolve.  That’s, in my opinion, what killed them.  They didn’t know that the nervous system must be treated very gently in order to recover and to avoid exacerbating the condition, either.  No new drugs.  They think they should try new drugs until one “works” (differential diagnosis such as on “House”).  That is exactly the wrong thing to use.  Differential diagnosis kills patients.  They don’t know that.  We do!!  We can protect ourselves now.

 

My experience was that knowing helped enormously.  SA tells us it will resolve.  Not when, of course.  No one can say.  The fact that you are seeing improvement means you are in the right course.  You will be very close to the last day of SI without having any idea that is true.  You will notice after several weeks that it has not occurred in a while.  Then it will come back and go away again.  Just like all WD symptoms.  One day, like me, you will say “Oh, it’s been a couple of months!  It’s true.  It’s going away!!”

 

I’m not saying it’s easy to live through but you can endure it, Elyssa.  It’s very hard.  No doubt.  My best advice: Distract yourself.  Watch tv or read or walk.  Walking is really the best.  Walking doesn’t only distract you.  It helps the nervous system heal.  If you have support, and you do, you are going to have an easier time.  A safe place to live, food, clothing, warmth . . . that’s all you need along with the knowledge to avoid increasing the disruption to your nervous system.  

 

We are the lucky ones because we found this website — because someone made this website and maintains it.  You will heal.  You just have to distract yourself from the aka, take it day by day, hour by hour, if necessary, until it slowly lessens.  I rarely have it, and if I do it’s very manageable.  It doesn’t involve SI now. I’m prepared that that could come back, but I know it will go away again.  That will be true for you someday.

 

The people who try a lot different things - supplements, new meds, changing dosages, missing doses, doubling up doses, that sort of thing — they don’t seem to do well.  You can’t miss a dose because you don’t take meds.   That’s cold comfort for a person who CT’d but still — it’s one less thing to try to manage in our state of being.  

 

Hang in there!! - 💖Rosetta

Hi R

 

Just looking st this post and an earlier one in this thread. You referred to some “depressive symptoms and anhedonia”. You also advocate activity and distractions. While I wholeheartedly agree with this (why I tried to go back to work , despite feeling crap), the depression and anhedonia sensations prevent any meaningful distraction.

 

Does that make sense?

 

God bless you and your family.

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Guilietta

Hello Rosetta,

 

I have been thinking of you and hope you are feeling at least a bit better today.

 

 

1 hour ago, Snorky said:

Walking is really the best.  Walking doesn’t only distract you.  It helps the nervous system heal.

 

From your sage advice, dear Rosetta - walking or any physical action - using hands to do something - your brain has a much harder time to ruminate, etc.  on anything but the physical activity. When I make a concerted effort to focus on walking, coloring, whatever you do (or may learn to knit? )  I am better off. I can much more easily catch myself and bring myself back to my activity and not be thinky.

 

I found pushing myself to move as fast as I could from physical activity to activity like cleaning the bathroom, and other housework, yardwork, even if they didn't need doing - helped 'reset' until the worst passed.

 

Hugs and blessings

G.

 

 

 

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Rosetta

@Snorky  Oh, yes, that makes perfect sense.  Anhedonia is quite a different beast than depression.  They share the ability to make us vegge. Although I’m sure I experienced it very mildly prior to the severe WD, the anhedonia I know exists now is truly horrific.  I agree that meaningful distraction isn’t likely during intense anhedonia.  

 

As time passed I came to appreciate having anhedonia as a welcome relief from severe anxiety and akathisia.  It was good to have a break from the fear, the racing thoughts and the constant processing of what could go wrong and how to prevent it.  At the same time I was mourning the loss of time with my daughter that anhedonia stole from me.  However, those breaks from unremitting fear were helpful.  There is only so much of that that one can take.  

 

I watched a lot of tv and read a lot of books about subjects that evoke emotion, and it was strange to not care about the characters, but those activities helped me pass the time.  I’m not sure I recommend those because when emotions suddenly return with ferocity having seen all of that does fuel the fear.  

 

I’m sorry you are suffering, Snorky.  Guilietta has a good idea - exercise.  Everything seems pointless, but exercise has both short term and long term benefits.  Keeping your body engaged when your mind is out to lunch might help.  I would understand if you couldn’t get up to do it.  I couldn’t for a very long time, but eventually I was walking every day.  

 

What a mess, huh?

 

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Snorky
21 minutes ago, Rosetta said:

@Snorky  Oh, yes, that makes perfect sense.  Anhedonia is quite a different beast than depression.  They share the ability to make us vegge. Although I’m sure I experienced it very mildly prior to the severe WD, the anhedonia I know exists now is truly horrific.  I agree that meaningful distraction isn’t likely during intense anhedonia.  

 

As time passed I came to appreciate having anhedonia as a welcome relief from severe anxiety and akathisia.  It was good to have a break from the fear, the racing thoughts and the constant processing of what could go wrong and how to prevent it.  At the same time I was mourning the loss of time with my daughter that anhedonia stole from me.  However, those breaks from unremitting fear were helpful.  There is only so much of that that one can take.  

 

I watched a lot of tv and read a lot of books about subjects that evoke emotion, and it was strange to not care about the characters, but those activities helped me pass the time.  I’m not sure I recommend those because when emotions suddenly return with ferocity having seen all of that does fuel the fear.  

 

I’m sorry you are suffering, Snorky.  Guilietta has a good idea - exercise.  Everything seems pointless, but exercise has both short term and long term benefits.  Keeping your body engaged when your mind is out to lunch might help.  I would understand if you couldn’t get up to do it.  I couldn’t for a very long time, but eventually I was walking every day.  

 

What a mess, huh?

 

Hi R

 

Thanks for your insight. I think I’m experiencing elements of depression, anhedonia and restlessness. The first two are killing any efforts to distract myself. I’m actually forcing myself to go out on trips with family, which should be enjoyable and distracting, but not the case. We also have a park here with wildlife, which should tick lots of boxes. Have walked round quite a few times, but unable to draw any enjoyment from the experience. Desperate at the moment. The loneliness was easier to alleviate by engineering situations to be out. However, current symptoms seem to be overwhelming.

 

Thanks

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Rosetta

Still having mood swings.  Felt absolutely awful night before last.  So depressed and hopeless.  Then I woke up yesterday feeling a lot better.  Today is fine, too, but the middle of last night was quite depressing when I woke up for an hour or so in the still of the night.

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Gridley
1 hour ago, Rosetta said:

Today is fine, too, but the middle of last night was quite depressing when I woke up for an hour or so in the still of the night.

 

I just wanted to note (as no doubt you're aware) that this mini-wave/window pattern is SO much better than pre-Spain.  Seems to me you are a textbook example of healing.  And, as he poet says, "The best is yet to be."

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