18 - 30 Month Plus Group

[[...]]

Thanks Sofa,

 

It really is groundhog day for some of us unfortunately, and I very rarely go to the protracted board. I saw Jens post on there and if that had been me it would not have helped me in the slightest. We all feel it's permanent and I know that's normal and I guess that's the key, to know it's normal to feel this, but to know and tell your self it's not true. I'm just triggered by how restricted my life is still and how painful what I can do still is. I'm terrible at comparing, even though I know it's wrong, I still read how some can do things and I can't, yet I know I do things that others possibly can't. It's just torture as you know. I know it's subjective and we are all different, but even so, I still freak out at how others can do things I can't, if this makes sense.

 

Success stories don't help me anymore, particularly recent ones as I don't relate to the stories (particularly when anxiety is not mentioned, as this is primarily driven by anxiety and fear caused by our brains) yet when I talk to Ian he assures me that mine is classic, with his own experience and to the many 1000's he's dealt with, even down to the fact that if I sleep better I can feel worse; he explained why that is. I know I don't have some stuff others do and others may not have some that I have, however fundamentally this appears to be fear driven. That's my understanding anyway.

 

I'm tired Sofa, I think we all are exhausted by the unrelenting awfulness at this stage. My dear mum said "you need a holiday", yet I know I would still be in WD on holiday (this thing follows us no matter what). A holiday isn't a miracle cure to withdrawal (Again Ian and Don Killian and others with experience of supporting reassure me that this is the case). Holidays will have to wait until recovery and it will be the best holiday ever! 

 

Sorry, I'm getting it all out; it really helps me to do this, you really can't sugar coat this can you? I had a scary night last night with physical stuff that woke me up and that was after going to bed after a decent evening. All in all though my sleep has improved for now. We've come a long way Sofa with not much in the way of breaks, however we are not unremarkable in our experience of this hell.

[[so...]]

Thanks Marj.  You are a gem.  You pretty much summed up all my fears and my journey so far.  Guess we have no other choice but to keep living...and waiting this out.

 

Sofa

[[dr...]]

I'm sorry I spoke of reinstating I just have never considered it until today!

And I deeply apologize to you all!

I just can't believe this is happening again and at my time frame...

I am close to agoraphobic again and have almost every single sx back! It's just unreal...

And this clearing the throat breathing crap has been my number 1 worse physical sx for a year now and it's just making me utterly insane in itself! And I have had every test I can imagine! So that's why I broke down and started the antihistamine.... 

And yes I have had some decent times this past year but I haven't ever felt like me yet. 3 plus years is wearing on me...

And this anxiety is just consuming in itself...

I'm still not able to go more than a few miles from my house solo... I'm a prisoner to this town, and lately the town seems to much for me...

Everything is returning, brain zaps, cog fog, DR, complete and utter fear of everything. Scared to be alone...  Taking a shower is a huge chore! Inner vibrations, fear of literally losing my ever loving mind has returned... It's just so much... The heart palps, panics and not normal panics that chemical stuff that eats you alive...

And it's extremely hard to know what's happening...

I seem to have lost my intuition during this journey and there are so many mixed responses...

Take these vitamins, no don't!

Try CBD it saved my life, then Omg Cbd almost sent me psychosis!

Try a antihistamine, don't try one!

It's just so hard to know wat is what...

Even freaking tea???

Sorry again but I'm losing it. Correction have lost it completely....

 

Jen-I am putting my money on the antihistamine.  I get revved by them if I take them more than every blue moon.  Also, please be aware that it is a cumalitive effect that builds up in your system.  If you were able to stop now it would probably take a week or so to start seeing improvements.  Hope you are able to try and forgo that to see if that is the culprit.   

[[dr...]]

Thanks Sofa,

 

It really is groundhog day for some of us unfortunately, and I very rarely go to the protracted board. I saw Jens post on there and if that had been me it would not have helped me in the slightest. We all feel it's permanent and I know that's normal and I guess that's the key, to know it's normal to feel this, but to know and tell your self it's not true. I'm just triggered by how restricted my life is still and how painful what I can do still is. I'm terrible at comparing, even though I know it's wrong, I still read how some can do things and I can't, yet I know I do things that others possibly can't. It's just torture as you know. I know it's subjective and we are all different, but even so, I still freak out at how others can do things I can't, if this makes sense.

 

Success stories don't help me anymore, particularly recent ones as I don't relate to the stories (particularly when anxiety is not mentioned, as this is primarily driven by anxiety and fear caused by our brains) yet when I talk to Ian he assures me that mine is classic, with his own experience and to the many 1000's he's dealt with, even down to the fact that if I sleep better I can feel worse; he explained why that is. I know I don't have some stuff others do and others may not have some that I have, however fundamentally this appears to be fear driven. That's my understanding anyway.

 

I'm tired Sofa, I think we all are exhausted by the unrelenting awfulness at this stage. My dear mum said "you need a holiday", yet I know I would still be in WD on holiday (this thing follows us no matter what). A holiday isn't a miracle cure to withdrawal (Again Ian and Don Killian and others with experience of supporting reassure me that this is the case). Holidays will have to wait until recovery and it will be the best holiday ever! 

 

Sorry, I'm getting it all out; it really helps me to do this, you really can't sugar coat this can you? I had a scary night last night with physical stuff that woke me up and that was after going to bed after a decent evening. All in all though my sleep has improved for now. We've come a long way Sofa with not much in the way of breaks, however we are not unremarkable in our experience of this hell.

 

 

I am not near success story writing but I am a huge success story in anxiety and panic.  I literally have none...zero...zilch....and I was in fear and terror before going on these drugs over 25 years ago.  While I tapering and post jump I was in constant anxiety states for months on end and had several panics a day.  Now,  I can't believe how mellow and relaxed I am.  I mostly have peace in my mind even with the physical crap which is now way less.  So Marj, use me as an example and quit your crying  

[[dr...]]

and lastly...I have had tow nights in a row of the Siggys(terrible sleep) so I am slowly sipping a full caf coffee and I have no neg effects.

[[Mi...]]

I threw out the antihistamines 2 nights ago...

Am I going to like withdrawal from them?

I am freaking out abit? I am having actual tremors today, shakiness, and sweating like a pig!

I thought this was just a big wave...

What have I done?  :'(

 

[[sl...]]

Hi Jen,

 

Sorry that you are dealing with this.  Trying to piece together what happened... When did you start the antihistamine?  Did the wave start before or after?  I also seem to now react to Benadryl.  Kicks everything up a few notches and no longer helps me sleep.  I think it stopped helping me around month 12 (only used on occasion),  so I hid it in my cabinet but resurrected it a few times since and it now makes things worse.  No surprise after the benzo disaster.  Hopefully I never develop bad seasonal allergies becasue what else can be done for that?  Anyway, hope you recover soon.

 

Siggy,

 

I've tried tryptophan with zero success.  The only OTC that has ever helped me (very mildly) is Benadryl, but as I stated above, it backfired after awhile. 

 

I slept 5-6 hours last night.  Thank the heavens above because I really want to see my daughter sing today in her biannual school concert.  I've missed too many and basically all of her kindergarten and first grade years.  I have a degree in elementary Ed and so hoped to be able to volunteer and sub at her shool this year.  That had never happened once . Hopefully next school year.

[[dr...]]

I threw out the antihistamines 2 nights ago...

Am I going to like withdrawal from them?

I am freaking out abit? I am having actual tremors today, shakiness, and sweating like a pig!

I thought this was just a big wave...

What have I done?  :'(

 

you might be more congested a bit but no withdrawal like anything we experienced.  Hopefully, the wave will now lessen as your body adjusts.  remember, you felt good before and it will return.

[[Si...]]

and lastly...I have had tow nights in a row of the Siggys(terrible sleep) so I am slowly sipping a full caf coffee and I have no neg effects.

 

Oh no! I'm sure it's just a blip in the road though.

My wife, the professional sleeper, even has a few off nights here and there. Nothing brutal like a lot of us have, but it still happens to her.

 

Antihistamines never worked for me earlier on. I had some very minor success with them this last setback. I still don't tolerate the OTC stuff very well, but the Hydroxyzine would squeeze out a few hours for me. I never had any withdrawal that I noticed from it. I've never  heard of many people having a problem with antihistamines, unless they were on a large steady dose for a long time. But even then, I can't imagine that it would last too long. You'll be ok Jen. Just ride it out the best you can.

 

I'm so sorry you're sleep is still crap sleeplessMT. At least you did get a decent night in and go to go to concert. Lately I've been sleeping even harder than I had. Maybe making up for lost time? I hope you start having more improvements soon.

[[...]]

Thanks Sofa,

 

It really is groundhog day for some of us unfortunately, and I very rarely go to the protracted board. I saw Jens post on there and if that had been me it would not have helped me in the slightest. We all feel it's permanent and I know that's normal and I guess that's the key, to know it's normal to feel this, but to know and tell your self it's not true. I'm just triggered by how restricted my life is still and how painful what I can do still is. I'm terrible at comparing, even though I know it's wrong, I still read how some can do things and I can't, yet I know I do things that others possibly can't. It's just torture as you know. I know it's subjective and we are all different, but even so, I still freak out at how others can do things I can't, if this makes sense.

 

Success stories don't help me anymore, particularly recent ones as I don't relate to the stories (particularly when anxiety is not mentioned, as this is primarily driven by anxiety and fear caused by our brains) yet when I talk to Ian he assures me that mine is classic, with his own experience and to the many 1000's he's dealt with, even down to the fact that if I sleep better I can feel worse; he explained why that is. I know I don't have some stuff others do and others may not have some that I have, however fundamentally this appears to be fear driven. That's my understanding anyway.

 

I'm tired Sofa, I think we all are exhausted by the unrelenting awfulness at this stage. My dear mum said "you need a holiday", yet I know I would still be in WD on holiday (this thing follows us no matter what). A holiday isn't a miracle cure to withdrawal (Again Ian and Don Killian and others with experience of supporting reassure me that this is the case). Holidays will have to wait until recovery and it will be the best holiday ever! 

 

Sorry, I'm getting it all out; it really helps me to do this, you really can't sugar coat this can you? I had a scary night last night with physical stuff that woke me up and that was after going to bed after a decent evening. All in all though my sleep has improved for now. We've come a long way Sofa with not much in the way of breaks, however we are not unremarkable in our experience of this hell.

 

 

I am not near success story writing but I am a huge success story in anxiety and panic.  I literally have none...zero...zilch....and I was in fear and terror before going on these drugs over 25 years ago.  While I tapering and post jump I was in constant anxiety states for months on end and had several panics a day.  Now,  I can't believe how mellow and relaxed I am.  I mostly have peace in my mind even with the physical crap which is now way less.  So Marj, use me as an example and quit your crying

 

 

Thanks Drew,  Ive had anxiety and racing thoughts insanely all day. I have to come home and cry as I dont know whats happening and have to release it somehow. I must admit I thought today,  maybe I need benzos,  its a disgusting thought,  but I cant bare this and I get triggered so easily. Today has just been insane. I just know Im gonna be years and years and I never used to think that.

[[Da...]]

How are you doing now?

[[Lo...]]

Well looks like partytime is over for me now. Fell into an acute wave this morning complete with generalized fear of dying and severe anxiety. Its been smashing me all day, looks like i pushed back into exersise too hard and paying for it now. I was sore after taking the dirtbike out but seemed ok until the workout pain passed and slipped into a few days mild anxiety.

 

As soon as that passed yesterday within 15 minutes i was on my pushbike and went for a half hour ride. BIG mistake. Felt ok when riding and ok last night bit woke up into a mental headfuck this mourning.

 

Trying to stay calm but goddamn its hard going

My CNS is going crazy. Way too mych stimulation and looks like im in for a rough night. 7pm and feeling totally jacked up.

 

So over this shit right now

 

 

[[Si...]]

Lockie the wave may or may not have hit you anyway. Although I'm not one to talk much about it as excercise never was a problem and only ever helped to burn off the anxiety and agitation. It will iron back out for you soon. Eventually there won't be any more waves.

 

I'm still clipping along ok. A lot of evening fatigue. The tinnitus has gone from an 8 down to about a 1 or 2 now. I still have some muscle twitching. Thankfully most of the burning has subsided. I really thought that was going to do me in since it was so excruciatingly painful. The last two days I've slept through my alarm. So pretty crazy to go from only averaging 1-3 hours a night to this.

 

I hope everyone else has a pleasant day.

 

Marj / Jen how are you all hanging in there today?

[[Lo...]]

Lockie the wave may or may not have hit you anyway. Although I'm not one to talk much about it as excercise never was a problem and only ever helped to burn off the anxiety and agitation. It will iron back out for you soon. Eventually there won't be any more waves.

 

I'm still clipping along ok. A lot of evening fatigue. The tinnitus has gone from an 8 down to about a 1 or 2 now. I still have some muscle twitching. Thankfully most of the burning has subsided. I really thought that was going to do me in since it was so excruciatingly painful. The last two days I've slept through my alarm. So pretty crazy to go from only averaging 1-3 hours a night to this.

 

I hope everyone else has a pleasant day.

 

Marj / Jen how are you all hanging in there today?

 

Thanks siggy , yeah your right i could have been heading that way anyway. Was a nice 10 day window was bound to end sometime. It definatly feels like i helped it along but who knows.

 

Im so stoked for ya Siggy. Great to gear about all the awesome healing going on lately.

 

Marj and Jen hope you guys are feeling better if not ill just join you in the trenches.

[[bc...]]

I am also in the trenches......this anxiety is horrible...24/7.....irritability, fear, feel like jumping out of my skin...looping neg thoughts, tremors.......can't cope with this anymore....can't sleep because of it surging thru my body.....can't think.....can't function......when does this cr** end.  It is really wearing me down....no peace or calm for mind or body......am losing hope.

 

Hoping for healing for us all......hugs

[[Lo...]]

Becalm im so sorry. You really are stronger than you realise, it takes a certain type of badass to get off and stay off this poision. Sending big hugs from downunder.

 

You are a true warrior

[[bc...]]

Thank you Lockie.....for your kind words and your big hugs.....I am really at my wits end with all of this....feel like I will go insane with this anxiety.....it is my one big sxs....and it won't let up...

 

Hoping you will be feeling better real soon.....this road to recovery is the worst experience that anyone can go thru...it is criminal and inhumane.  Big hugs back to you.

[[...]]

Well I'm still here, but last night I was ready to throw in the towel. Just so done with this, cried myself to sleep. Made it to work, not as much anxiety but physical torture , my body is just rigid, I'm convinced I have something else and head and neck pressure.

 

Just been messed about by another buyer on ebay and it's set me off ridiculously, can't breathe, eyes gone weird and numb, feel like I'm having a stroke. Things like this would not normally bother me, I have always been robust, but I simply cannot handle anything, and I mean anything. My week is a repeat and rinse every week, I work because I'm a sole provider, I pay the mortgage, there is nothing else in my life, I have nothing left. I've had paper and paint to decorate my lounge for over 3 years and I have done loads of decorating prior, it is impossible, it is survival and it scares the shit out of me. Was thinking this morning that I can't continue to work like this, then what? Sorry I'm just so done with this, but I'm at work which felt impossible.

 

Bcalm, I'm so sorry you're suffering so much too, some of us get so slammed and you're doing so well enduring this and like lockie said, don't know you're own strength. Keep going 

[[bc...]]

Thanks marj for your comforting words.....and so sorry that you are still suffering...give you a lot of credit to be able to go to work thru all of this.  This nightmare has got to end soon.  How much torture can a human mind and body take.

 

I, too have some physical pain.....but it is tolerable compared to this anxiety....this is brutal.

 

Hoping all this ends for all of us real soon so we can get to living and not just existing........hugs

[[sl...]]

Bcalm,

  I hear ya.  In the same boat today after having a few better days.  I stupidly allowed some stress to get to me this morning... It shot every daytime symptom through the roof.

Note to self:  Do not enter other forums and try to help people realize that their drugs are causing them to jerk all night.  They do not want to hear it and will call you a fear mongerer, among other nasty names.  Wow. I think the drugs are making them all delusional a-holes. 

 

Thank god I have this place to help me realize that I'm not all alone... And that I'm not crazy like many seem to think!

 

[[MT...]]

Sleepless,

 

You were trying to help people on those other forums. Which ones did you have that experience with? I tried the CFS forums and got so discouraged by how heavily medicated they were, seeing meds as the answer and clearly having problems from the meds. But that was me too until 4 years ago when I got whacked by the light. How's sleep going? I've had very little sleep the past week but more is happening at night than it used to. This takes so long!

 

MT

[[so...]]

Hi Buddies,

 

It's so strange this withdrawal.  I'm so beaten down and exhausted from 30 months of pummeling.  Symptoms lessen, then they come back, new ones pop in and, truthfully, I don't have the strength anymore to fight it or care.  I'm so tired of it all.

 

I hope you all keep up the fight.

 

Sofa

[[Si...]]

Hi Buddies,

 

It's so strange this withdrawal.  I'm so beaten down and exhausted from 30 months of pummeling.  Symptoms lessen, then they come back, new ones pop in and, truthfully, I don't have the strength anymore to fight it or care.  I'm so tired of it all.

 

I hope you all keep up the fight.

 

Sofa

 

Hi sofa, I know how hard it is to keep slogging through this morass. I kept feeling like giving up and that I couldn't go in for another minute. But we do. We pick ourselves up, dust ourselves off, and keep marching forward. You know why? Because we're all too tough as nails to let this garbage beat us. Like a marathon runner exhausted nearing the end of the race, you will make it over the finish line.

 

I always liked the paraphrased quote from Ian at CEPUK. If it goes on for very very long it can be extremely tough. But rest assured everyone gets better. I don't remember the exact wording, but it's something like that anyway. It's from one of his video interviews.

[[...]]

Sofa,

 

Hang in there sweetie, I honestly understand what you mean, but 30 months of unrelenting suffering shows what strength you really have. We are all doing this, we can see it till the end, it’s so cruel, but look how far we have come.  It will end soon. I’m saying this for my own benefit too

 

Wednesday was so bad for me I couldn’t take anymore, I was almost hysterical.  Yesterday started off again unbearable, everything stressing me, stupid things that would normally just irritate. Whwn I got home I had a bit of a lift and made some brownies (I had been wanting to do this all week but was too ill) to take to work at the same time as cooking my son’s dinner. When I went to bed I felt almost normal. Got up for a piddle in the early hours, still ok. Got up for work bam off we go again, crushing fatigue, even though I got some sleep, and what I call MS like symptoms, dizziness, sounds shattering my ears etc. So much that there’s no point giving it space, only that somehow I got to work, brownies in tow and I just want the day to end. Somehow we have to make it through the day the best we can, like we have over and over. I know how hard it is.

 

 

[[so...]]

Thank you Siggy and Marj,

 

You are so strong, even when I'm not.  Yesterday I got hit with a bad case of DP/DR?  I don't really know what to call it.  Even though my physical symptoms are quieting down, there is this complete disconnection I feel.  My body goes through the motions of walking, cooking, talking on the phone ...existing...every day, but it stops there.  It's not seamless.  I am aware every minute that I am not me.  It's like I'm in there somewhere, maybe, but I am an empty shell, just a breathing "organism," not a person.  I can't seem to be part of the flow of life.  I'm merely walking onstage like an actor in a play.  This is not living.  I tried really hard to remember the way I was before this all happened.  Just waking up to my alarm, showering, going to work, shopping, walking my sweet dogs twice a day, visiting my family, drinking wine and chatting with neighbors, watching TV, falling asleep.  What was awful about trying to remember how I used to be was that it feels like all those activities happened to someone else and maybe it wasn't me at all.  Maybe this is who I am and always was.  This empty shell of a human being.  I can't remember life being seamless and easy.  I am always thinking now...thoughts and a mind always racing...I don't remember being like this before.  I just lived.  My mind wasn't constantly in hyperdrive, was it?  I can't remember just simply driving to the store, or looking at clothes, or walking through the mall, or grabbing a bite to eat, with no thoughts at all.  Why does my mind always KEEP THINKING?  Why do I have to always tell myself I'm okay?  Why do I have to constantly reassure myself that Im healing and this will all go away?  I'm just so tired.

 

I hope I'm not alone in my feelings.  Lie to me, if I am.  Ha.

 

Love you all, Sofa