The Long Hold Support Group

[[Va...]]

Valley and anyone else.

 

So this sxs is from the drug... tapering the drug.  All of the above .... it's hard to function.  Feel like I'm going to fall.  Worse at the end of the day.

❤️HS

For me it was tapering too fast. It got worse as I held before it improved. Sorry you have this as it does interfere greatly with life.  —V

[[be...]]

Heath .....I feel for you....and feel like this often

I don't post much anymore because I feel like I'm such a downer and I dont get very many responses.

I just started basically....I've been on this drug fir so long and the dizzy boaty feeling follows me everywhere.  The doc says to hold .....but fir how long.  I dont know what I'm doing either....all I know us that I feel lousy every day....I'm trying to push and do things...but all I want to do is sit on the couch..  not good not to move.  When I was tapering every two weeks I could barely get a shower......now I'm actually afraid to start to cut again....it's been almost 2 months...

 

Lynn....Valley.....Begood.....anyone have any words to encourage.

 

I'm anxious about cutting....I'm anxious about not cutting....

 

My doctors really don't have a plan.

 

And my family is going to Disney in November.......they want me to go....just weighs on my mind.

 

Gloomy rainy Monday.....but I need some words. Please

❤️HS

Hi HS. The dizzy boats feeling stayed with me a long time. It is very annoying and unpleasant but it did gradually improve and pass.  I only occasionally get that feeling now and lasts is a few minutes and passes. Hang in there. It seemed to last several months while I was holding.  —V

HS I totally agree with Valley.

[[NJ...]]

I finally cut last night after holding since the spring. 2 percent, seems small but would rather go small than large. Going to try to hold this at least two weeks.

 

I have had terrible nausea that is not going away no matter what I do, this has been my most persistent symptom. I have been using CBD oil since August but now it doesn't seem to help. I am under more stress than usual so think that may be why. I am hoping that it doesn't get worse with cutting, although I feel like I need to get some forward progress and get moving.

 

 

[[He...]]

Good luck NJ

 

NAUSEA is a terrible feeling

[[He...]]

Hi all

 

Does this ever happen to you?

 

I start to feel better ( a relative term). I start to do stuff. Go out.

Last week I went to the grocery store.... I was more active. Them bam.

The last two days I have felt really dizzy and just lousy. Like the flu kind of. But I'm not sick.

Nauseous like NJ ....

 

Is this part of the program???

 

I'd love to hear if anyone else is going through this

❤️HS

[[Su...]]

Hi HS,

Yes I sure do a two steps backwards one step forwards kind of dance....

I'll think I'm on an up -- usually do too much and then crash with a variety of sxs.... Or it can happen that I just have a normal day and then wake up feeling lousy... but hopes springs eternal  and if I look back at my journal things are getting better..... but I'm basically holding cutting a wee bit here and there.

I have a very quiet week so I'm going to ramp up the taper  (from .002 to .003  )  breakneck speed  every couple of days..... this usually hits me about a week later

It seems this is part of the tango with BenZos.... frustrating and inevitable.

I know I try to plan on how I might feel if I have some things I REALLY want to do but adjust ing some stuff.... it works.. sometimes  :laugh:

So yes it sure happens to me and today I can laugh about it -- yesterday I wasn't so jolly...

SS

[[To...]]

Hi all

 

Does this ever happen to you?

 

I start to feel better ( a relative term). I start to do stuff. Go out.

Last week I went to the grocery store.... I was more active. Them bam.

The last two days I have felt really dizzy and just lousy. Like the flu kind of. But I'm not sick.

Nauseous like NJ ....

 

Is this part of the program???

 

I'd love to hear if anyone else is going through this

❤️HS

HS, thankfully, I can say that this has not happened to me -- at least not the physical symptoms. Had some anxiety issues early in the taper that really taxed me, and I felt wiped out after going out and doing a number of activities.

 

I saw in another of your posts about an upcoming trip to Disney with your family. I hope you wind up going. Not sure if your grand kids have been there yet. If not, this is a pinnacle event in their young lives, and one that could really be a boost for you. Conversely, a real downer for you if you don't go and miss the time of their lives and happy memories forever of a really great time.

[[To...]]

Omg I am texting in the car and just read what I wrote. I didn’t go to spell check! My mistake. Now I see all the typos in my last. 3 texts! Omg! I hope you can understand everything I wrote! Sorry!

Heath - very funny. Must have been a bumpy ride to the beach 

 

I am glad you are feeling better!

[[...]]

Hi all

 

Does this ever happen to you?

 

I start to feel better ( a relative term). I start to do stuff. Go out.

Last week I went to the grocery store.... I was more active. Them bam.

The last two days I have felt really dizzy and just lousy. Like the flu kind of. But I'm not sick.

Nauseous like NJ ....

 

Is this part of the program???

 

I'd love to hear if anyone else is going through this

❤️HS

 

I am going through that today. I had some pretty good days last week and then yesterday started feeling yucky. Today is worse. I do feel like I have a cold, but I know all too well that these are w/d symptoms. Apathy, Tinnitus, Blurred Vision and nausea. It has been 8 days since I cut last. I was thinking of cutting over the weekend, but common sense told not to. Yes, this is a big part of the program. It can be very frustrating as you think you are over the hump, so to speak. I will say that this too will pass!

[[He...]]

Thank you guys.  Very frustrating... can't plan a thing

❤️HS

 

PLUS STRESS OF ANY KIND IS A KILLER FOR ME

???

[[NJ...]]

HS: Yes, I think when we feel good and do too much we can suffer later. But I do think it is important to do as much as practical, just try to throw in some down time, meditation, yoga, whatever might work for you. Right now, my youtube meditations seem to be the only thing that touches the nausea (although it is better this afternoon than it has been in days--and I just got home from lunch with a friend and shopping in the Columbus Day crowds!).

 

I agree with someone who posted about the trip to Disney. Travel is tough and for me always seriously flares symptoms but life is too short not to go. The older I get the more important I realize how true this is--life is just too short.  I take compazine when I travel so I don't throw up the whole time. Usually leaves me groggy but at least I am there with my family. I hope you will go--you can always take some time away from the parks to rest once you are there.

[[He...]]

Thanks NJ and TMB. about the Disney trip....it'll be the last time I probably will get there...last time my daughter was 8.  I have to find someone to take care of my dog....I'm dragging my feet.

 

Because of my pain condition....my husband is going to have to push me ina wheel chair....that works for the zoo....or the flower show.....even Cooperstown.....but pushing me fir a week at Disney.....he says we will make it work.....

I just never know how I'm going to feel.  Today going to the cleaners was a big deal....I'm just not well....and from the fast taper....very out of shape......

 

But it'll kill me to stay home.  That's why I keep pushing...to get some strength back.....it's only a little over a month away....

 

Gotta make a decision........

 

Thanks everyone for cheering me up....  this is hard.....

 

The holding and figuring out if I'm doing the right thing....my husband said the holding has made me functional......but then I have to proceed.

 

 

I miss CANT .....anyone know anything???

 

❤️HS............LIFE IS SHORT

[[ly...]]

 

 

HS - can you rent one of those motorized scooters for the week?

[[He...]]

Lynn. Great idea. But I have a shoulder problem too. It's complicated.  My husband said he'd do it and he's in great shape ... I just don't know if I have the stamina to do the whole week.  I lay down slot.

I remember when I was 35 and being spent at Disney when I walked miles every day

 

I just wish it weren't in s month. And between thanksgiving and Christmas...

 

Whin whin whin.

 

The kids are so excited. And we are going with my daughters in laws.

It's complicated

 

❤️HS

[[be...]]

HS, we all miss Cant, hopefully he is OK, almost a month soon since he has been on. I received a message from him right before he signed off on the early morning of Sept 15, he seemed to be in a good mood and was awaiting a visit from another Son. So hoping nothing is wrong, he did not seem to be a person that would just walk away, but then we all get surprises, hopefully he will come back soon and let us know he is OK.

[[He...]]

Thanks Begood for your report and your kindness to me.

❤️HS

[[He...]]

Huge anxiety about this Disney trip and my inability to do it.....kept me awake last night.

I have trouble getting to the grocery store for a couple of things.....how do I go on this trip...

 

Feeling terrible this morning. Extremely anxious

Everyone has their own troubles....I'm sorry I'm just venting

 

❤️HS

[[Va...]]

Huge anxiety about this Disney trip and my inability to do it.....kept me awake last night.

I have trouble getting to the grocery store for a couple of things.....how do I go on this trip...

 

Feeling terrible this morning. Extremely anxious

Everyone has their own troubles....I'm sorry I'm just venting

 

❤️HS

HS, if it’s any consolation I’ve found I can do a lot more than what I feel like doing. It seems once I get busy and involved in what I’m doing the withdrawal gets pushed to the back of my mind. Try not to stress to much about it and just focus on enjoying yourself. I know it sounds simple but it’s held true for me and hopefully you too.  —V

[[Kg...]]

Healing Seeker I don't post much but I will tell you that you can do this trip. It is the anticipatory anxiety that is making this so difficult.  I say this because I had to do things like this - for example I had my daughter's wedding -which was out of town. So imagine being the mother of the bride and all that entails during the throes of the worst of your taper.  I was a complete wreck. If it wasn't for my friends on BB  telling me I would be fine I don't know how I would have made it. Yet I did and I had a great weekend. 

 

Disney is very accommodating to people with disabilities. You can rent a wheel chair and probably a scooter as well. Your children will love you since as best I recall wheelchairs get to cut the line.  Please know that you can do this - it is the thinking about it that is the killer not the actual doing. 

[[He...]]

Yes. My mind is a busy street.....all negative....all fear...

 

Going to try to go grocery shopping to do something normal.

 

Thank you Valley and Kgirl......

 

I have terrible mornings. BUT IM TRYING

 

❤️HS

[[He...]]

Valley .....you always have an encouraging word fir me every morning......thank you fir your kindness

❤️HS

[[NJ...]]

HS I agree with kgirl10. It is always the anticipatory anxiety that gets me. I know that and it still does me in every time. I get sick before I travel every time; once there I am okay. No one can tell you what to do. I would just hate to see you miss something so important that you might be able to enjoy.

 

What I have found through this process is that it robs us of CONFIDENCE. On top of all the physical symptoms I have, I am just not as confident as I once was. I used to change jobs every three years at most (I work in an industry with high turnover). Now I am in an awful situation but find myself not applying for jobs I am qualified for because I don't know if I can handle a job change.

 

I know this doesn't help, but hopefully you can feel less alone.

[[Va...]]

Valley .....you always have an encouraging word fir me every morning......thank you fir your kindness

❤️HS

You’re welcome HS. 

[[He...]]

Hi all

As far as the Disney trip goes.....it's not the anxiety per se.  It's my physical disability that is my worry.  It just may not be realistic.  I think we are all in denial about my physical abilities. 

It is what it is.......

 

❤️HS

[[NJ...]]

Only you know what is best for the Disney trip. Disney definitely isn't for everyone. In the end you are the only one who knows what will work for you!