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4 years off and plus group


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I'm looking for other buddies struggling who are near four years off or over who are looking for comfort,support, in this journey...

If anyone interested it would be awesome.....I'm looking for support and company

 

Hugs

TM

 

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Hi TM  - How great you have started this thread for us folk off at least 4 years, as it is a very lonely and frightening stage to reach when you don't feel healed as you had anticipated much much earlier.

 

One of the reasons this thread will be of benefit to those of us who have reached this stage is that we can be honest and upfront about how we are feeling without having to hold back for fear of worrying or upsetting those following on behind us  as is sometimes the case on other sites - even the protracted board which I go on, but often I hold back and don't tell it how it really is because I am aware that folk as early as 18 months can be on there too, and if they hear how bad some of us are at 4 yrs out it could easily frighten them as it's hardly encouraging news.

 

However, I will add that  I don't think we should hide the truth from other  buddies as it's  bad enough that most of us have been lied to by those we trusted in the medical profession. Therefore,  if asked for the truth of how I feel I would be honest and tell it how it is for me and maybe for others,  but on the other hand I don't feel comfortable spilling my guts on site as how bad I'm feeling to those who may be still early out and maybe cause  them unnecessary distress.  So thank you TM for starting up this thread where those of us  off 4 years and  plus can be ourselves  on a site where we can honestly share, encourage and support one another.

 

 

Regards racksha  :thumbsup:

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Yes...Rachska....hoping this thread will stay up.....but coming here and telling your pains and fears or whatever is happening is great....open doors to whom ever wants to voice what's going on...

 

TM

 

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I woke up early this morning...my sleep is pretty much broken up duiring the night....Woke up with the lovely dread and heart beating a little bit fast...trying to calm myself....have to go to PT for my arm which I really don't feel is getting better but I'm giving it a try....

 

Hugs

TM

 

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My upper right arm is having issues...they don't think its my shoulder and if it is it's like partial frozen shoulder so maybe it's a nerve issue or muscle but I noticed it after my surgery this summer it is also the same arm which they ran a pic line in it to give me the antibotics to get rid of the infection from the surgery ....anyway...I'm going to physical therapy...they make me do an hour of exercises on the arm and do so message .....I move my arm in a certain way like to put on my coat or bra or even reaching a certain way brings on intense pain it doesn't last long but it's aweful...

 

Hugs

TM

 

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Sorry about your arm TM. I tore both rotator cuffs in a fall caused by my hypotension & POTS in early acute but they are mostly ignorable now even tho I was not diligent with my PT

 

I may be luckierr than some in that i have had some very good windows but the waves have been as bad as acute inthe last few months so I still cant make life plans or commit to permanent work.

 

I will be 5 years off in March & hoping that year 5 is the magic one for all of us reaching that marker, or earlier of course for those entering the 4th year.

 

My brain clearly knows what well feels like & if your healing pattern is to have slow improvement or symptoms changing up rather than windows and waves, we all have the potential to be free of this any day now, even if feels like waiting to win the lottery.

 

Being in the slow recovery lane is a drag but at least we can support one another knowing that more than likely we are well passed the halfway point.

 

After being in hospital having passed out right before Christmas, ( just more withdrawal freakiness apparently as no other cause identified) & still bedridden at New Years, this week has been better. Have had to spend a fortune with the mechanics to get my car reregistered but I am so excited to be out of bed again that regular worries and aggravations matter less.

 

My tinnitus is extra loud tonight which can suggest another wave is hovering but not always so heres the middle finger to that.

 

Here’s to an improving week for us all.

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Yay, I found you guys. Hi all. Texas mama so sorry about your arm and all of you here still suffering.

I was in pt over this past summer for the neuropathy in my legs. It helped to build my muscles a little in my legs. At the end of three months I was able to walk up and down four stairs..haven't been able to do that in four yrs. My legs are still very weak and numb and I have completed all testing, yet nobody can tell me whats wrong with them...they just want me to take muscle relaxers and neurotin to shut me up..not doing pills and I won't shut up.

I have been honest with them about my benzo history, two withdrawals, and antibiotics use(cipro). They deny either drug has caused my suffering..but they don't know what's wrong..idiots!

We are all in this together and I wish you all much healing. Hugs.

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Beulah....I’m glad that PT helped...I hoping for some improvement....it’s so weird how we all are effected differently..we’ll get through this

 

Ihope... I’m glad you get windows..I’ve never had a complete window just days that are a little better gosh I’m sorry about you passing out that must of been scary...I’m praying for a complete recovery at your five year mark

 

Wishing everyone a great evening and a better tomorrow

 

Hugs

Tm

 

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Count me in I am at 55 months and still have broken sleep but I know that I am getting more memory and healing with it. We need to encourage each other because we understand it takes time. I understand because when I was at my worst in the 1 and 2 year I could not have handled seeing 55 months of pain and agony.
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I don't have alot to say except I'm over 5 years off and still suffering horribly and getting worse.  My life is so difficult now and everything makes me panic and freak out.  Doc diagnosed me with Memory Impairment and Amnesia and possible stroke.  I've got dementia now and my head pressure never lets up.  I can hardly walk anymore either.  I'm sick every single day.  It's a hell of a life now.  Pure hell. 
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My partner is now at 3.5 years off (after a 28 month taper) and he's getting worse.  He's been confined to bed since last April...only trips to the bathroom and a bath at night break up the days.  Two days ago we had to turn off the TV, computer and smart phone when the flickering screens started causing even more symptoms (increased dizziness, vertigo, etc.).  This is a new and horrifying development.  He has spent most of the last 5 years in bed/in a chair/on the couch.  There was almost a year of being able to take walks on a daily basis, but that came to an end after an ear cleaning at the doctor's last spring.  The vertigo returned with a hellish fury and walking was no longer possible.  He keeps hanging on and trusting in the healing process, but he is so discouraged.  Distraction helps immensely, but many of his coping techniques went away two days ago...no more technology.

 

Thank you for starting this group...it seems to get lonelier on here the further you get from the "jump."  Maybe that's because of how discouraged so many are when they get to this point.  It's good to have some company out here :smitten:

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Becks and cali    - Am now off 4 yrs  and feel for you as it's  almost beyond description how long we suffer and what these evil drugs do to the body and mind with all the cruel and bizarre sx.  :'(

 

Since I reached 3 yrs off 13 months ago I have felt worse as the year has  passed, to the point where I feel each and every day as if I'm actually slowly dying,  as even the short distance  from my bed into my en-suite bathroom can make me breathless feeling as though I've climbed Everest = scary stuff bringing a large dollop of anxiety along for the ride  just so I don't get complacent - WHAAAGH ! :tickedoff:

 

As you say  Becks, it's pure hell and for some of us the longer out we get the worse we feel, dragging us down and frightening the life out of us as it makes no sense whatsoever, especially when really awful new sx start appearing this late out. And my biggest fear is that it won't end and allow us to return to being healthy and normal, because how can we call this healing and recovery ? :crazy:

 

 

Apology for miserable post  but  have not had any proper windows to give me confidence, only a few hours glimpses of a little  betterness some late evenings if the sx go down - Anyone else feeling same  :sick:

 

:hug::mybuddy:

 

.

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Beck...Racksha ....I feel the same m worse....some days are more managable and then I have days where I just can't believe the mess I'm in....I swear it feels like my face is squeezing with my darn teeth I can't relax my muscles in my face ...hate this...

 

Cali ....Im sorry your going through so much pain....I'm hoping things will turn around soon....many say it gets aweful before better...and for this to happen after a very great taper ....makes no sense...

It's so awesome that you have a great support symptoms...you both are going through so much..hugs to both of you..

 

TM

 

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Cali, it's possible your partner has what they call "ear rocks" causing the vertigo.  BPPV I think they call it.  They do an Eppley maneuver to fix it.  There's a dizziness thread on this forum which talks about it alot.  Google "ear rocks" and get some info. about it.  You mentioned your partner got vertigo after an ear cleaning.  Could be this problem.  It does go away on its own.  I had it a few times.  It happens to people who are lying down alot.
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I found you all. Thanks for starting this thread......I had a PM note sent to me saying I was scaring others because of my posts, stating improvement continues even at 10 years out caused others anxiety!

 

I am glad I can be honest and truthful here. Coming up on 48 months in March. I wrote a success story BUT.........Not 100%, yet, have a ways to go.

 

Alison, thanks for noting that Laura noticed improvement after 4 years out plus........

 

I still believe in that complete healing with time and more time.

 

Always, cindy

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Cindys........yes come in and tell us more about your journey....at this point nothing surprises me on healing but I can get emotional at times by how much pain others are in.....

 

My biggest hang up is this all withdrawal or do I have some other neurological disease along with withdrawal....try to positive self talk all day ...

 

Hugs

TM

 

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Just curious will you accept me as part of your group even though I am 3 1/2 years off.  Will be four years off in July of this year.  I am still very comprised in what I can do and accomplish.

 

Sweet pea

 

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Hi all. Cindy, I would never consider the post of ten yrs out and still healing. It proves we still have healing going on even though we thought we were done and no more healing...I look at it as very encouraging. In my first wd I thought I was done and it kept getting better and better.

 

Ladies, so any of you still get muscle cramps and spasms, especially in your pelvic floor? They are making my life so miserable and don't know what to do about them. If you know of anything that helps Please let me know.

 

:smitten:

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beulah,

 

Right now I am thankfully being treated by a pt/ot group that specializes in pelvic floor dysfunction.  I was trying to get into see them for about a year and finally got the referral they wanted (for insurance purposes  ???). 

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Sorry did not finish am tangling with the cat to type, he does not want me too, wants all the attention.  I have now progressed to pelvic floor exercises, still having one spot on a muscle on the right side that is giving me most of the distress. 

 

Sweet pea

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Hi everyone, coming up on 5 years off in May.  Just emerging from a wave in September that put me back in acute withdrawal.

 

Cindy, I’m so sorry that you received that PM.  It worries me that even on the protracted board we are being discouraged about talking openly about our ongoing recovery

 

Laura Delano was very encouraging, I seem to remember that she was still very unwell at the 4 year mark, she told me that she really only started to heal properly after that and did most of her healing in the 4 to 6 yeer range and beyond.

 

I often play the CEPUK videos in my group as they are short and are really well done.  I think of Ian Singleton’s story often, he was so very ill and took a long time to recover but if you read about him and look at his videos, he is well now.  He does a lot of work helping others in the UK on the hotlines and in person groups and they know that the healing continues for some of us, it just can take many years.

 

I am getting better but the progress is slow.  Even in the past year, I regained my ability to nap when really tired.  That hasn’t been the case for nearly 10 years, since I was placed on the drug.  It has gone again sadly due to the wave but I feel confident that this is a sign that my brain is continuing to heal this far out.

 

Thank you TM for starting this thread.  I have often wanted to be able to share how I was doing, I’m more careful on the protracted board and try to be supportive of others so I tend not to post about my own journey, just shore up others when I have something encouraging to say.

 

I am grateful to have found my husband’s Qwell portable pain relief device works for me.  I tried it last week out of desperation as my muscle pain has been excruciating since September.  It really helped so I’ve taken to using it every day.  Yesterday I was busy so I skipped a day and I had a really tough day again so this morning I’m back on it for a couple of cycles.  Anything to give me relief at this point, muscle pain has been my worst symptom since month 18 and the pain this fall was immobilizing.

 

I’m nervous about the year ahead as we are finally getting our house ready to be sold and likely moving cities.  I’m not sure how I’m going to handle the stress of all of this.  My husband is lovely and supportive but his own health issues (congestive heart failure diagnosed last year after his hip replacement) mean that on a practical level he can’t do a great deal so it is mostly on me.  Willl be interesting.

 

For anyone interested in Ian’s story, this is a speech he gave:

 

https://www.benzo.org.uk/singleton.htm

 

And here are his videos:

 

https://www.madinamerica.com/mia-manual/psychiatric-medication-withdrawal-cepuk/

 

I think his point about being able to openly share his journey with people who absolutely knew he would heal is critical.  We need to hear this message again and again, particularly when we hit setbacks.

 

I wish the Bristol Tranquilizer Project was closer to me but that being said, my own support group has introduced me to some really lovely people and we have had some real success stories in the 2 years I’ve been running it.  There isn’t anyone there as far out as I am though so I spend my time there reassuring others that they can come off and that they will heal.  I miss Fliprain’s support thread in that sense, she is one of the buddies here ahead of me who is very reassuring and on a personal level, she is one of my heroes as she went back at the age of 60, not yet healed, to do a masters degree in counselling and she is nearly done.

 

:smitten:

 

Ali

 

 

 

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Ali - I have been fortunate to speak with Ian weekly for the past 4 yrs - He is such a caring, understanding man whose support and  calm reassurance  has helped me (and still does) through many dark hours. He is the first to admit that even after 30 years  experience he doesn't have all the answers - No one does because  there has been so little research done. But thankfully when it comes to supporting folk through wd into recovery, as he has done for all those years, it stands to reason he knows a lot more than most. And for this I am very grateful as am not sure how I would have coped without the encouragement of Ian and his team.

 

I wish everyone had this same sort of support. :mybuddy:

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Raksha, how lovely.  I didn’t remember that you have been speaking with him.

 

Short of actual research, probably the best source of information are the warriors in the trenches like Ian who have seen it all over the years.  We have BBs and the 10 years of experience here and of course Dr. Ashton.

 

I think that the most important thing is that we support each other and hold out our stories of hope and healing.  At this point, even small improvements matter to me.  I focus on that in my group, trying to get people to note even small shifts in their symptoms as signs that they are moving forward.

 

There is suffering.  And then there is the suffering about the suffering.  I mostly cope with the first.  It is the second that causes me grief on the days when I dwell about the fact that it is taking this long and that I’m having acute symptoms this far out.

 

Raksha, I’ve always thought that you have the loveliest indomitable spirit.  You are a true warrior and so very kind to everyone on these boards.

 

:smitten:

 

Ali

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