The Long Hold Support Group

[[jr...]]

Thanks guys. I'm not 100% but my sfxs are a lot better. In the last week its been a big turnaround. This time last week I was wondering if I'd ever improve.

 

It still amazes me at how quickly things change.  I have had weeks where I was symptomatic and ready to give up the taper.  Then, out of the blue things turn around and I feel almost 100%.  Glad to hear you are doing better.

Anne

 

I could have written that, Anne!!! Sunday , I felt great!!! Monday I was anxious and depressed all day. Today , another great day. Tomorrow...........????

[[He...]]

Healthcliff, thanks for asking how I'm doing. How are you holding up?

I had a better day yesterday, then woke with a start from adrenaline rush this morning sobbing.  :'(I hate that feeling and it's so scary. So now today I feel horrible and scared again.

I actually feel worse sometimes after I take my morning V dose of 2.5 mg.

There's no way to get used to the non linear process of this is there? As soon as I feel a little hope and then get smashed again I get despondent and depressed.

I suppose the only way through is acceptance , so damn hard.

Feel like I'll never get stable..... I know you all understand .

So another day to get through.

Hope you all are doing better today? 

Hold on Miyu! In reading your signature, it looks like the lag time finally caught up. If I were you I would hold until you feel better ( it took me 6 months but it was well worth the wait ).  Be patient and let your CNS recover.  You'll be glad you did IMO. Try to distract but be gentle with yourself and know this will pass.  --V

 

Thank you ValleyUm... You're a great support and encouragement ......I probably should have waited after the cross from K to V to stabilize, but I just wanted to get on with it! I'll keep holding and pray that I start to improve . Im trying to get this quote business right..... Not sure if I have ! About to post this and will see.... 

 

Thanks for asking about me MiYu. Your post could almost have been posted by me. It is so similar to how I feel.

 

You are so right about this thing being sooo NOT linear in its healing.

 

Yesterday was a bad day.

 

This morning I woke up feeling pretty good. Then things got bad again.

 

I am still wearing the neck collar, but I got in the car and actually was able to go on four different errands.  But towards the last errand, the old back pain was coming back. Got home, took off the neck collar and had to put it right back on.

Seems like the back pain is a precursor to the shakes.

So here I sit with all the wsfx back again, shakes and all.

Talk about windows and waves!

So I had a cry, felt better, and decided to be grateful for the good window I had even for a short time today.  I try to remember that my brain is healing at its own pace. TRYING TO BE POSITIVE!

 

I hope everyone who is still struggling thru will have wider windows and better days.

Hope tomorrow will be a good one for everyone.

 

Heath

 

[[li...]]

Great to hear Shamo!

 

I guess for me the realization that "stabilization" for me means something very different than for others is very discouraging.  But I'm trying with all of my might not to feel hopeless.

 

I held for six months, but didn't feel differently after six than I did after one or two. 

 

But then 7 days ago I decided to even out my doses and cut from 4 a day to 3.  First two days I felt better.  Day 3 and 4 were hellish with psychotic symptoms I had before the hold.  I was so ignorant of the fact that my body would see it as a big cut.  Day 5, 6 and 7 I'm not having psychotic episodes, but I feel like death and side effects aren't any better and in fact some are worse (was hoping they'd improve by changing dosing). 

 

So I believe I finally understand after trying to stabilize that this is the best it's going to be for me.  Barely functional, barely holding on at times and disappointed that even tapering slowly in the past year, I've crashed. 

 

But I know that the hold got me out of the worst symptoms so when I resume my taper in about a week, I'm going to probably do c/c/h/h/h because it seems like my brain is okay with change the first 48 hours and then it freaks out. 

 

Hoping I see a little bit of improvement in the next week and that magically I will feel better as I taper.  THAT HAS NEVER HAPPENED FOR ME, either with Ashton method or with daily liquid microtapering in many many attempts.  And no I can't switch to another drug.  I just have to deal with it.

 

So Valley Um was right, but so was Lainey and Kgirl.  For some people stable just means you're not getting horribly worse by the day, but you're not improving either.  I only ever felt "good" for short periods on Ativan--never felt "good" on Klonopin so I pray with all of my might that by some great mercy, as I get this stuff slowly out of my system, I will feel better without crashing.  And I won't be afraid of holding, but just won't do it as long probably next time.  I'm on Day 191 now.

 

Love you all and grateful that some of you are doing so well.  There is hope.  But if this is anything like my last taper, I won't feel functional until 6 months after I get off--which is going to take years to do.  Can you tell I'm in a good mood today? 

Liza

[[la...]]

Update...1st let me say how saddened I am Liza that the hold did not bring the fruit you had prayed for...me neither.

 

I was tested for Lyme because my symptoms have gotten worse...I now have tingling in hands and feet. head is really bad never get a window from the spaced out woozy whacked out head  along with 24/7 dizziness...eyes blur and burn...oh the list goes on and on

 

so I have been told that some of my symptoms are due to herniated discs/ Migraines (silent) and of course Benzo HELL  then someone asked about Lyme  oh what a crap shoot that has been

 

so lets see I cut yesterday  my 3rd cut since quitting the Long hold..no worse,,, and absolutely no better just tortured daily.  But I am now at 5.5mgs and that's a great success since Dec. 12.5mgs

 

going to see holistic integrative Dr...in hopes that she can help me sort this out...Because now I am being told I may have "co-infections" from Lyme!!!!!

 

all I know is when I tapered last time I did not have ANY OF THESE symptoms....so I tend to believe there is something else going on with my immune system

 

but just wanted you all to know I am tapering because I want OFF

 

 

Liza and Free  you know you are in my prayers

[[He...]]

Lizagal, Lainy, Freeme, MiYu and anyone who is struggling,

 

I am sorry  to hear you all are struggling so much for so long. 

 

Some buddies (Anne?)  have posted that they were in such a bad state for weeks that they were ready to give up and then the next day, things turned around greatly.

 

I hope the turn around for you all happens one very soon fine day. I feel for you.

 

My wd Sfx can get pretty bad at times ( probably not nearly as bad at what you are contending with) and I want to give up, but then I remember that tomorrow might just be the day that things turn around. 

 

I sincerely hope you continue to be strong and that your turn around happens really soon and that all your tomorrows get better.

 

I hope everyone who is struggling will keep up the fight and the faith and feel better soon. 

 

 

Heathcliff

 

 

[[Va...]]

That would explain a lot lainey. Hope it starts to get better as you get further down.  --V

[[li...]]

I've had so many functional medicine doctors tell me over the years that I had something else. Everything from lime disease to candida to mercury poisoning and much more. I've had dozens and dozens of blood tests, urine test stool test, And nothing ever shows up. It's always just Benzo crap. I hope for your sake Lainey they find something else

[[la...]]

Thanks all, I will say ALL of this is NOT benzos since I had some of these symptoms (at a MUCH lesser degree) prior to benzos

 

so this Doc can help me with my gut and getting off benzos along with whatever else may be lurking

 

I just do not want to take any more pharmaceuticals.  that's all the Drs want to give me...Amytriptiline, Gabapentin, Flexeril.....on and on it goes

[[li...]]

Lainey--just didn't want you to pay thousands and get duped like I have by world renowned functional medicine doctors--their supplements made me worse. I hope they find your answer!!!  God bless

[[la...]]

Liza, I do know how expensive this is since they don't take insurance,,,there are a lot of protocols that can be done on your own...for instance I am now doing the "Salt/C " protocol  cheap and easy...whether it will help is another question...

 

also we have infrared sauna...EXCELLENT detox no matter what is wrong with you benzo or otherwise

[[li...]]

I can't even handle being out in the heat for more than a couple minutes--I feel sick, shaky and poisoned. I would not do well in a sauna but hope it works for you. Unfortunately we don't get to choose what gets detoxed. I had a doc trying to detox me last time I was getting off benzos but the detox affected the level of med in my blood so it was like a cold turkey.

 

I never should have tried to switch to three a day trying to improve this. I should have known Id have a horrid reaction. My DR/craziness today is off the charts. Feeling psychotic again. Dear God help us.

[[Va...]]

I can't even handle being out in the heat for more than a couple minutes--I feel sick, shaky and poisoned. I would not do well in a sauna but hope it works for you. Unfortunately we don't get to choose what gets detoxed. I had a doc trying to detox me last time I was getting off benzos but the detox affected the level of med in my blood so it was like a cold turkey.

 

I never should have tried to switch to three a day trying to improve this. I should have known Id have a horrid reaction. My DR/craziness today is off the charts. Feeling psychotic again. Dear God help us.

Give it a few more days. It should even out.  --V

[[li...]]

Thanks for always being encouraging V

[[jr...]]

I can't even handle being out in the heat for more than a couple minutes--I feel sick, shaky and poisoned. I would not do well in a sauna but hope it works for you. Unfortunately we don't get to choose what gets detoxed. I had a doc trying to detox me last time I was getting off benzos but the detox affected the level of med in my blood so it was like a cold turkey.

 

I never should have tried to switch to three a day trying to improve this. I should have known Id have a horrid reaction. My DR/craziness today is off the charts. Feeling psychotic again. Dear God help us.

 

Liza. FWIW , I would go back to 4 doses and even updose if I had to. There is a lag time when cutting and also a lag when updosing. Give it some time if you do decide to go up. I am sorry you have to endure this. we all have at one point or another in our taper. Keep the faith and look up. It will get better.

[[...]]

Valley Um, thanks for reposting the propaganda list ...I re read it and it helped me feel ok again about holding holding ......

I must say, I've never really felt great on Valium..... Or any benzo for that matter, but I was such a mess from the steroids before I even took benzos , my nervous system was not happy...

Did I put the steroid fiasco in my signature , not sure......

Heathcliff thanks again for your encouragement .

Lizagal.... Hope you feel better soon.... I'm with you ,

[[li...]]

Is anyone in this group tapering klonopin besides me?

[[Va...]]

Is anyone in this group tapering klonopin besides me?

I can't remember which BB on this thread is but I know there is at least one. --V

[[la...]]

Liza just to let you know that whenever I make any change even with dosing it feels like a CUT....so know that it is not unusual to feel this way...You just have to decide if you can ride it out.

 

when I simply made my doses equal, not changing anything else...it felt like a cut

 

I hate being in the heat also...but I force myself all summer long to get out for the Vit. D the infrared is not like steam but you do get HOT And sweat a lot in there...that's why I haven't gotten in there yet.....kinda scared and its so hot outside figure when its cold I won't mind it as much?

 

sorry you are still feeling like crap if its any consolation...SO AM I...Just keep begging God to change something in all of us

[[li...]]

Thanks Lainey. I don't know why I didn't think it would feel like a cut since I'm on the same daily amount. Are you cutting and holding or doing daily microtaper?  How long before you were back to baseline when you switched your dosing?

[[fr...]]

  Liz and Lainey, So sorry you both are still suffering along with me.  I feel the littlest cut also.  I am so destabilized I guess.  I would hold it there for a few more days if you can stand it and see if it smooths out.  I hope so.  Lainey you are doing so well.  I made another tiny cut and boy do I feel it today.  Hoping it goes back to simply horrible again instead of horrendous.  V, BG and all others doing so well on the long holds, so so happy for you.  Keep up the good work.

[[li...]]

Free have you considered daily microtaper?  Supposed to be easier to tolerate though I had a problem with that too just not as horrendous

[[fr...]]

  I am considering it but just hate the thought of having to mix up that stuff, measure pull, sounds so complicated to me.  I would also have to use milk, can't have any alcohol.  I might try it now that the Dr. gave me 2 mg. pills I can break one in half and dissolve in 99 mg of milk and go from there.  At this point I don't think anything will help me.  I think the combo of meds I'm on is making it worse but I have to taper all three.  I'm in such a bind but still hanging onto the hope I will feel some better one of these days.

[[li...]]

I thought it was hard to figure out and it still is but people on the daily microtapering group are very helpful.

[[Va...]]

  I am considering it but just hate the thought of having to mix up that stuff, measure pull, sounds so complicated to me.  I would also have to use milk, can't have any alcohol.  I might try it now that the Dr. gave me 2 mg. pills I can break one in half and dissolve in 99 mg of milk and go from there.  At this point I don't think anything will help me.  I think the combo of meds I'm on is making it worse but I have to taper all three.  I'm in such a bind but still hanging onto the hope I will feel some better one of these days.

Free, it's really simple. I use propylene glycol and water to make the solution. I only use a 10ml and a 1ml syringe and a jar. I only use the Likud for the cut portion and dry tabs for the rest. It's a lot simpler than it appears. If you want my help, I can give you step by step instructions.  --V

[[fr...]]

  I already have 5 ml. and 3 ml. syringes from when I was on a liquid med for CDiff.  I could use these I guess.  Where do you get glycol?  Amazon I guess.  Is this method better than the milk?