The Long Hold Support Group

[[To...]]

Sorry I’ve been away.  My wife left me this week and having to deal with the fallout.  I’ll check back in when things settle down a bit. Hope all are doing well. —V

Valley, sorry about your bad news. From what I can see from the number of posts, you have an army of buddies supporting you. Hope that helps to give you strength to deal with the 'fallout'.

 

Stay strong.

[[Al...]]

Sorry I’ve been away.  My wife left me this week and having to deal with the fallout.  I’ll check back in when things settle down a bit. Hope all are doing well. —V

 

Valley,

I know this must be a very hard time for you. I always feared mine would leave as well but not yet.

 

Try to stay strong and know you are not alone.

 

ATU🙏🏻

[[ly...]]

Cut 7 weeks ago and been in a bad wave for a month now. I took a long hold last year and stabilise brilliant.  I was having really good windows.  Please. Will I stabilise again,feel like I'll never get better from this.

 

Hi Beano,

 

Since you stabilized last year after a hold, I would think you will stabilize again.  I'd give it a bit more time.  How long did you hold last year?

[[He...]]

Glad to hear from

MIYU and FREEME but sorry to hear you both are continuing to have bad wdsx.

HOPE CANT IS OK! And everyone else who is in a bad spot.

 

I hope you are continuing  to be strong and know that it's just a matter of time and patience and you will soon have Windows to be grateful for. I know it is easier said than done, and I don't want to minimize your pain, but really, you never know when that magical moment will break through. So keep up your strength, distract all you can, hold on! And don't give up. We are all rooting fir you! You are both an inspiration to all who are suffering and fighting these benzos right beside you :oXo:

 

Keep up the fight!

 

Heath

[[be...]]

Glad to hear from

MIYU and FREEME but sorry to hear you both are continuing to have bad wdsx.

HOPE CANT IS OK! And everyone else who is in a bad spot.

 

I hope you are continuing  to be strong and know that it's just a matter of time and patience and you will soon have Windows to be grateful for. I know it is easier said than done, and I don't want to minimize your pain, but really, you never know when that magical moment will break through. So keep up your strength, distract all you can, hold on! And don't give up. We are all rooting fir you! You are both an inspiration to all who are suffering and fighting these benzos right beside you :oXo:

 

Keep up the fight!

 

Heath

Heath I am worried about Cant also, I am hoping everything is OK with him and his Family and he only needed a break. I wish we had a way of finding out, but really there is nothing we can do.

[[He...]]

Begood

Yes I am so worried about Cant. Its not like him to just stop posting. I hope he returns soon just to tell us he is ok.

He has always uplifted so many of us, with his funny sense of humor. I wish we could help him out if it is a case of him needing us.I too wish there were a way to find out if he is ok, like asking an administrator to look into it, but I know that is against privacy settings and I do of course respect that!

All we can do is wait and hope we hear from him soon.

 

Heath

[[To...]]

Slow Sunday update. Been holding 17 days since I cut below 1mg/day. Overall, my two worst issues with taper and w/d: sleep duration/quality and relentless anxiety.

 

Possibly a breakthrough on the sleep front. Using a really cool app on my phone, "Sleep Talk Recorder", I have been monitoring my sleep and find that I most likely have a pretty good case of sleep apnea. That would certainly affect the quality part. I wonder also if it might be affecting duration. So, I messaged my primary care doc and she referred me to a sleep specialist.

 

Interestingly, I had a sleep study done 20+ years ago and was diagnosed then with fairly severe apnea. I rejected the cpap at the time and opted for a dental appliance instead. Improved things but gradually I stopped using it. I never revisited as my snoring diminished (due largely to lifestyle changes resulting in being more fit) and the ativan was effective for quite a few years in "knocking me out". So I slept "well", in terms of duration, but I think the quality always sucked.

 

Weird that it never occurred to me to have myself checked again. I was so fixated on the insomnia that I missed this other critical piece. If it turns out to confirm things, I will run to get a cpap, which I think is pretty much the most effective treatment out there.

 

I wish it was as simple to address the automatic thoughts driving anxiety. A couple hours a day, usually right when I wake up, it is gripping. A year ago, I was having panic attacks and a very hard time functioning. Now, a year later, I am a million times better, on a relative basis, but clearly still struggling. By mid-morning, most days, I seem to snap out of it as I divert my attention to other things that I can get lost in. Mid-evening, I can feel anxious thoughts creeping back. I find it easier to fight them off as I am pretty diligent in clearing things as preparation for going to sleep. Of course, poor sleep quality just adds to it.

[[ly...]]

 

 

Hey TMB, I hope the sleep study provides some answers.  My sister had one and ended up with the CPAP.  Her sleep improved dramatically.  Isn't it weird how things are at their worst upon waking?  I still wake to neck pain and T which goes away in an hour or so.  I've never quite figured out what happens when we sleep(?).  I've not had troubles in the evening except for certain times during my taper - but not often.  In some ways I think it's when we are not as distracted.  For me it was always when I was in bed, waiting to fall asleep.  Maybe it's being tired at the end of the day?  For me it was the quiet I think.  Hope you get some answers on the sleep issue.  You can think you are getting a decent night sleep when you really aren't.

[[To...]]

Thanks, Lynn. I think it will fill in a number of data points that will make a difference, especially with devising a strategy to improve things. My mood and sleep quality are nearly perfectly correlated. I am 'functional' in current mode, but definitely skirting the edge, rarely feeling "good" and little to no margin if things degrade a bit.

 

 

 

 

[[ly...]]

Thanks, Lynn. I think it will fill in a number of data points that will make a difference, especially with devising a strategy to improve things. My mood and sleep quality are nearly perfectly correlated. I am 'functional' in current mode, but definitely skirting the edge, rarely feeling "good" and little to no margin if things degrade a bit.

 

Well, here's hoping the sleep gets better.  They say that everything is better after a good nights sleep and that is very true.  Hoping you get some soon.

[[He...]]

Hi

 

Hoping not to sound like a broken record......but I REALLY need guidance as I am so darn confused.

Two weeks ago I went to my family prescribing doctor.......I had updosed to 3.25 mg of Ativan and he was not pleased.  But the small honeymoon that I experienced with the hold was over and I was feeling really crummy.  He told me to start cutting again.  I was terrified.  If you look at my signature...you'll see that I have crashed twice at that mark of 3.25.  Still a lot of Ativan .  So I cut .125 or 1/4 of a pill last week and by Friday I was nuts and really close to going to the ER.... none if my doctors were around.  Husband was away....my daughter had 2 sick children and well my Mom is 87.

 

Waited out the weekend barely able to go outside to get the paper....exhausted and in tons of pain.

 

 

Just got back from his office......expecting a pep talk about getting off because I feel so lousy.....

 

 

He told me to hold until after Christmas. 

 

I'm nauseous, dizzy , off balance, in severe pain, anxious, not sleeping...

 

I really don't know if I'll stabilize on this dose. And I'm scared of not doing the right thing....

 

Can I get some perspective.......I know you all have great luck holding but you are not on as high a dose as I am.....I feel like I'm running out of time....or I've wasted a year of my life.

 

I'm so confused

 

❤️HS

 

 

 

[[ph...]]

Hi everyone. Looks like I will be holding for a while since my terror/agitation is really bad  so I thought I'd check in here. I'm new to BB for the most part.

 

So sorry you feel stuck and confused healing seeker. Hopefully someone more experienced  will give you some guidance

[[He...]]

Do you guys think I can stabilize on such a large dose?

[[Kg...]]

Healing Seeker - I think you made too much of a cut of the Ativan.  Perhaps go back to your last dose, hold there a bit and then try a much smaller cut when you feel better.  If the long hold didn't work for you, you may be like me.  I got worse on a long hold, it was a nightmare for me.  The benzo in my system acted like a poison to me.  If you are like me, the only answer is to keep cutting at a rate that is tolerable to you.  I feel so much better off this poison and I feel so bad for people who are going through hell to get off.  It is a horrible experience. 

   

 

I hope you start feeling better soon.

[[NJ...]]

Healing seeker--I am wondering if you felt better when on 5 mg of the Valium? I am just wondering if you go up on the valium and then cut the Ativan somehow, if that might be better. I am not sure with the two benzos. It is hard to know what to say. I know the long hold does help many us (I think it saved me) but I never necessarily felt sick while taking the medicine.

 

I do know that before I stabilized I had to updose. I agree with kgirl10 that small cuts, definitely help.

 

I should cut today but I am not sure if I should ... I have been on the go, go, go for the past three weeks interviewing for jobs. I got an offer today but it was so low and very stingy time off, I am 48 and have a sick mother, so I think this one is out. Have two others in the works but if all this craziness has me end up with nothing I will be very upset.

 

 

[[He...]]

Thanks for responding NJ

 

GOOD LUCK with your job search

 

I'm pretty sure I've made up my mind......has to be my decision and I'm tired of waffling.

 

❤️HS

[[He...]]

Hi HS and anyone else on multiple drugs.

 

I know nothing about up-dosing.

 

But I do know a bit about getting off of two benzos that I have read often.

 

Prof Ashton says you should not taper off two benzos at once. ( among other things, you won’t know which drug will be causing wdsx that you may get.)

 

Also, Valium has a long half  life. That’s why many people c/o to valium before tapering. It’s easier to taper off of a drug that has a long half life.

 

Therefore, I have also read and I agree, if you are taking two drugs, it makes sense to taper off of another drug before tapering off of Valium.

 

Of course that is assuming that Valium does not make a person sick to begin with.

 

No matter what drug you are on, going too fast and cutting too big will very very likely put you in a very bad place as far as wdsx go.

 

Slow and small is the way to go.

 

Heath

[[He...]]

Heath

I love that you always respond to me and that you really seem to care.  I know I've been a pain the the butt......just think about my poor sainted husband.

 

I've made many many many mistakes.....including letting the p doc ( who won't see me anymore cause she doesn't know how to get me off if these drugs)... put me on Valium to sleep....now I'm in a pickle.

 

The RSD/CRPS puts a real wrinkle in my taper and in this decision.....that's why it's been so hard.

If you think people don't understand about benzos.....try explaining RSD/CRPS ......most people have never heard if it.....even medical people.  Stress is terrible fir my disease....stress of the taper....but stress from medication that is making me sicker.  I say all of this to help you all understand my angst.

I felt like I put a damper on the group and that stops today.

 

I don't have a choice about going low and slow.....but I'm on a higher dosage than you all holding

 

MY WASHER JUST BROKE.....MAKING A TERRIBLE NOISE.  and it's full of water

 

Ok. I was talking about stress...I don't handle it well

 

Thanks Heath.....you are a sweet person

❤️HS

[[fr...]]

  Healing,  I understand and my cousin has CRPS.  I also have chronic pain and it adds so much to the mix. I don't post much because I'm so sick like you.  Just wanted to say I can't handle any extra stress either.  I cry at the drop of a hat now.  When I think of the person I was I am so sad.  Know even if I don't post much I am thinking of you and praying for all of us to get some relief. 

[[He...]]

I told you freeme....we can have our own support group....

Thank you for your kindness.....does stress ramp up your pain???  As soon as the washer broke the pain went right down my legs ......this disease is so strange. Anxiety has a huge effect on my pain.

 

They are suppose to knock down a house next door and build a new one......great for my property value......cause the house will be gorgeous.....but it stinks for the noise and stress.

FEEL BETTER

❤️HS

[[fr...]]

  Yes yes and yes, stress of it all has ramped up my pain.  No one understands except people here.  My husband just got a positive on a test and I am so stressed out.  My daughter will have to take him, I can't go anywhere and sit for any length of time.  HOrrible way to live.  I'm glad its jsut the washer, that can be fixed.  Try to relax. 

[[Su...]]

  Yes yes and yes, stress of it all has ramped up my pain.  No one understands except people here.  My husband just got a positive on a test and I am so stressed out.  My daughter will have to take him, I can't go anywhere and sit for any length of time.  HOrrible way to live.  I'm glad its jsut the washer, that can be fixed.  Try to relax. 

 

Free, sorry to hear about the results of the test for your husband..... please be good to yourself during this rough time

SS

[[fr...]]

  Thanks SS. so  kind of you. 

[[He...]]

I am sorry also about your husband.....is it serious?

Thinking of you ❤️HS

[[fr...]]

  No not yet.  He got a positive on the Cologuard test for colon cancer.  Now he has to go for full colonoscopy and I can't even be there for him.  My daughter said her Dr. said about 50 % get a positive result.  Can mean cancer or just polyps or could be nothing.  I pray its nothing, he is a smoker and on a lot of diabetes and cholesterol meds.  He does everything here a far as shopping for food etc.  He doesn't cook or clean so I still manage the wash but really need a good cleaning in here.  He runs the vaccuum but doesn't do the heavy stuff and now I can't either. Anyway, he is getting mad at me now, I have been sick so long and he keeps telling me to see another Dr. I try to tell him they just don't get it either. They will just suggest a fast taper or worse, a detox.  So I really try to hide how bad I feel.  I know he doesn't mean it but he can get short and snippy with me.  Anyway, I pray for a good result with the colonoscopy.  He has no symptoms Dr. just ordered it as part of his annual physical.