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9 months off, still struggling


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Hi Everyone  :smitten:

 

I am 9 months off all "brain-meds" including 4 mg K and 10 mg V, as prescribed for the better of 13 years.

 

I wish I could say I was starting to feel better... but I am still struggling through each and every day, especially because of the mental symptoms (anhedonia/apathy, monophobia, inability to distract on my own with simple things like books, TV or even the internet).

 

I think I may have seen tiny tiny tiny "windows" on December 15 and 18, then in January. I keep wondering whether I imagined feeling that tiny bit better, perhaps those days were easier because I had things on and didn't have to desperately seek distractions?...

 

Month 9 seems to have brought on a little uptake in physical symptoms like tinnitus, paresthesia and the weird hunger sensations and "urges". 

Here is the list of symptoms I try to keep track of...

 

Anhedonia 8

Emotional blunting 9

Difficulty thinking 7

Difficulty planning 8

Can’t read/watch TV 9 (interest or comprehension pbms? Or both?)

Can’t feel calm/focused in the moment/always thinking about wd 9 (better during ”window” (January holiday))

Monophobia (worse in the evening before dinner, waiting for people to come back from their day, worse when waiting at home, better in a public space…), not fear/phobia, mental anguish – “nothingness of my brain is unbearable”, can’t distract on my own 8-9

“Nothingness of my brain” 8

Time is at a standstill – a minute feels like an hour 7

“Urges” and some very weird thoughts… 2

Rebound REM 7

Memories keep popping up 7

“Rememotions” (remembering emotions, healing!) 3

Intrusive thoughts 4

 

Tiredness 7

Tinnitus – ramped up month 9 (night) 4

 

Always hungry, never feel full 6 (getting better) – ramped up month 9…

Little pleasure from food 6 (is sometimes better?)

 

Neck/Upper back tension (feels worse in bed) 6 (getting better) – ramped up month 9

“Body heaviness” 6 – month 9 better…

Weakness 6 – month 9 better…

Blurry vision/sensitivity to light (puffy eyes) 6 (getting better)

Puffy eyes (esp upon awakening) 7

Paraesthesia (hands, feet and back, especially in bed) 6 (getting better) – month 9 ramped up at especially at night (legs & hands)

Morning GI 2

Can’t feel comfortable in bed 7 (slightly better)

Bizarre body-awareness when lying in bed (not sure what my position is, where my limbs are, if I’m horizontal or not…) 4 (better)

 

Swelling of face, mouth, cheeks, gums – area varies - often worse after eating? 6

Weird taste on teeth??... 7

 

On the positives:

- I am much more aware of myself (although painfully), no longer live alone in my little world

- I want to connect with people (even if that's hard)

- I no longer suffer from "hypersomnia"

- I can exercise, eat and drink what I want (not touching alcohol though)

 

...a recent positive is that I tried playing the piano again and that did seem to take my mind off withdrawal and the constant quest for stimulation from my environment, so I'll have to keep at it  :thumbsup:

 

As always, I try to stay positive and look for success stories, or stories of healing at least. Withdrawal symptoms feel incredibly permanent, like there is no way out. I am not sure why that is. Another "illusion" in withdrawal: when you chat with somebody with the same symptom(s) you struggle with and they tell you they are xyz months out, it seems customary to think "I can't survive xyz months like this!...". This is so incredibly trying...

 

I hope I can soon report back here with some signs of healing. Thanks to everyone for your wonderful support, BBs is an incredible lifeline...

Hang in there, we are healing. No matter what it feels like!!

Hugs!  :smitten:

Julz xx

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Congrats on nine months Julz!  I just finished mine too. It’s nine months we’ll never have to live through again. And we are healing. I have a lot of the same symptoms as you do.

 

I had a wave from month 8.5 on. So nine wasn’t good for me either.

 

We will get there. Here’s to month ten and a lot of healing for us.

 

:smitten:

McS

 

 

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Congrats on nine months Julz!  I just finished mine too. It’s nine months we’ll never have to live through again. And we are healing. I have a lot of the same symptoms as you do.

 

I had a wave from month 8.5 on. So nine wasn’t good for me either.

 

We will get there. Here’s to month ten and a lot of healing for us.

 

:smitten:

McS

 

Thank you McS  :smitten: :smitten: And congratulations to you too on your 9 months!  :thumbsup: :thumbsup: :thumbsup:

 

I'm sorry you can relate... but very true: nine months neither of us will ever have to go through again. NEVER  :thumbsup:

 

Here's to healing  :thumbsup: And hopefully month 10 bringing some nice windows for both of us!  :thumbsup: :thumbsup:

 

I'm also thinking of all Buddies who are around the same time out and still struggling. I hope we all start to get more signs of healing.

 

Hugs,

 

Julz xx

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I get you on the apathy and inability to distract. For the longest time I couldn’t pass the time. Nothing I used to do would help so I decided to try something new. I bought a guitar and just said dammit I’m going to learn to play. It’s been THE best thing I’ve done for recovery. I can play a few chords and some catchy riffs now! It was a struggle learning through the thick cog fog, but after a month I really think it woke up part of my brain. I used to just sit and wonder what the heck to do..didn’t want to watch tv or anything like that. Now I just pick up the guitar and it passes the time. If not guitar, look into something musical. I think there’s healing in learning and Playing music.
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I get you on the apathy and inability to distract. For the longest time I couldn’t pass the time. Nothing I used to do would help so I decided to try something new. I bought a guitar and just said dammit I’m going to learn to play. It’s been THE best thing I’ve done for recovery. I can play a few chords and some catchy riffs now! It was a struggle learning through the thick cog fog, but after a month I really think it woke up part of my brain. I used to just sit and wonder what the heck to do..didn’t want to watch tv or anything like that. Now I just pick up the guitar and it passes the time. If not guitar, look into something musical. I think there’s healing in learning and Playing music.

 

That's great, Ryano! I have just started playing the piano again. I realise that during my first hour of practice, my brain was actually busy reading the score or trying to remember things I used to play 10 or 20 years ago. An hour of not constantly thinking about withdrawal and "still not enjoying this". I can't say I was enjoying myself but my brain was busy  :thumbsup: ..the only thing is that the piano is at my Mums... better than nothing  :thumbsup:

 

There definitely is healing in learning, and music can only be good for us, cognitively and emotionally  :thumbsup:

 

I hope you start feeling much better soon...!

Hugs  :smitten:

Julz xx

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  • 1 month later...

Hello old friend.  ;)

 

Way to go on getting off all that stuff.  I'd forgotten that so many are detoxing from more than one drug.  I find it

heartening to see that you made it off and are on the road to wellness.

 

You talked about not feeling all that great from day to day.  But you had quite the poison in your system for so long,

now your body and brain are resetting.  That'll take time, and time is all we've got, right?  :laugh:

 

I'm coming up on three years off, and I can tell you that it is so gradual that sometimes the only way to understand

any progress is to think back to when you were at your worst.  Then you'll know.  :)

 

You always seemed very smart and caring and super intelligent as to what you're going through.  As you move forward

with your healing you'll see yourself blossom and be drawn more to the things that made you the wonderful person you

are. 

 

Lots of newbies in here, as I look around after so much time.  It was special to see your name.  :smitten:

 

See you again,

 

- Jeepy

 

 

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Hello old friend.  ;)

 

Way to go on getting off all that stuff.  I'd forgotten that so many are detoxing from more than one drug.  I find it

heartening to see that you made it off and are on the road to wellness.

 

You talked about not feeling all that great from day to day.  But you had quite the poison in your system for so long,

now your body and brain are resetting.  That'll take time, and time is all we've got, right?  :laugh:

 

I'm coming up on three years off, and I can tell you that it is so gradual that sometimes the only way to understand

any progress is to think back to when you were at your worst.  Then you'll know.  :)

 

You always seemed very smart and caring and super intelligent as to what you're going through.  As you move forward

with your healing you'll see yourself blossom and be drawn more to the things that made you the wonderful person you

are. 

 

Lots of newbies in here, as I look around after so much time.  It was special to see your name.  :smitten:

 

See you again,

 

- Jeepy

 

Hi Jeepy!!  :smitten:

 

It's wonderful to see you pop in! There years off? Time flies, in the right direction!!  :thumbsup: I hope you now feel largely well, only memories of withdrawal... I truly hope so.

So, what are you up to, these days? I will go looking for your update, or perhaps a success story?

 

Thank you so much for your kind words. Still not doing good at 10.5 months but hanging in there. I have gone back to dancing which was my life-long passion so that keeps me busy and active  :thumbsup: I also keep busy chopping vegetables for woks, my poor brother, he'll be longing for pizza  :laugh: Eating healthy and saying away from chemicals and supplements which go through the bloid-brain barrier. One day at a time... another day in the right direction  :thumbsup:

 

I think you were a long the very first Buddies I interacted with when I joined BBs and started my blog, 3 years and 4 months ago  :D I can't believe I was on so many drugs and so much of each... such a long way to go. Our stories unfold as de go through them... and hindsight will give so much more clarity to all of us.

 

Many congratulations on your journey, Jeepy, I think you have gone much farther than any jeep would ever take you, off drugs and back into wellness with a new-found appreciation for life. Can you believe YOU have give yourself this marvellous opportunity? Waw. Live live live!

 

Great Big Hugs  :smitten:

Julia xxx

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Congratulations and hope you continue healing. When I decided to begin my DMLT I also decided that I wanted to take piano lessons. It is been over a year now, and I can play a few pieces now that I always wanted to play. It has been a great booster to my emotional state! I hope you continue playing the piano; music is a great therapy!
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Congratulations and hope you continue healing. When I decided to begin my DMLT I also decided that I wanted to take piano lessons. It is been over a year now, and I can play a few pieces now that I always wanted to play. It has been a great booster to my emotional state! I hope you continue playing the piano; music is a great therapy!

 

Thank you, Solyluna!

 

I am delighted that you have followed through with the piano lessons and have made good progress! Not only does a hobby take up our mind in a positive way, it can also help to see that we are able to achieve something which has nothing to do with withdrawal. Decreasing dosage, counting days, weeks and months off benzos... we need to give something else to our brains!

 

Well, I can't say that I have kept at piano... but I have found something else to help me cope. I have gone back to dancing, even committing to a regular class. On the days I have dance, I have a "purpose", a reason for getting washed dressed fed and even put some makeup on. It makes me part of a group of people, and during this hour and 30 minutes, my brain is usually too busy with choreography  :thumbsup: Plus, it is usually good exercise too!

 

To everyone: find the hobby which works for you, and don't talk yourself out of it!

Happy Healing  :smitten:

Julz xxx

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I want to thank you for sharing your progress, even if it's only a little bit. It truly gives me encouragement to continue fighting, so thank you for helping me to continue fighting!

 

You are a true benzo warrior, and please, don't ever forget that!

 

Have you tried marking your good days and OK days down on a calendar to see if you're making progress? I color in my good/OK days and look back on my calendar to remind myself that I still have had good days. Keep up the great work!

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I want to thank you for sharing your progress, even if it's only a little bit. It truly gives me encouragement to continue fighting, so thank you for helping me to continue fighting!

 

You are a true benzo warrior, and please, don't ever forget that!

 

Have you tried marking your good days and OK days down on a calendar to see if you're making progress? I color in my good/OK days and look back on my calendar to remind myself that I still have had good days. Keep up the great work!

 

Many thanks for your kind words, Hope4hope  :smitten:

 

I haven't been keeping a record, but you make a good point, perhaps I should, even if I don't get a significant difference between "good" and "bad" days. Perhaps, the sun shining could make a day just that little bit easier?

 

Congratulations on being K free! How have you been feeling? I hope the windows soon begin to outweigh the waves  :thumbsup: Let's keep positive about this. We are doing something which is quite incredible. Well done and keep going!  :thumbsup:

Hugs  :smitten:

Julz xx

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  • 2 weeks later...

...and 11 months off today!

 

I can't say I see much progress... so just updating here rather than creating another benzo-free thread.

 

I believe I am coping better with the horrible mental symptoms, having gone back to activities which I used to enjoy, rather than just looking for company and starting every day trying to decide how to pass the void of time of yet another day to survive. I can't describe the "craziness" of my mental torture, I guess one can call that mental akathisia.

 

Hopefully month 12 will start bringing some relief, any sign of healing will be welcome after such a long road!

 

However very grateful to BBs and everyone who has supported me through this, and still does. Also very grateful to have realised I had to come off the cocktail of psychiatric drugs which was deeply incapacitating me for 13 years... this is a chance at a new life... I know healing happens, and I know it will happen for me too - well, it is happening, but it will start showing at some point! (right?)

 

Hugs!  :smitten:

Julz xx

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