Hitting a brick wall - Stuck on my Taper!! - Klono@#$%^&!!!

[[de...]]

10 year illness.Many misdiagnosis. The one they settled on was chronic fatigue ME with depression and some anxiety. Symptoms Extreme dizziness. Muscle aches n pains, weakness in limbs, palpitations, tiredness, mind and body going 1000miles an hour, just to name a few.

Given Rivotrill(Klono) 2mg - 1mg morning and 1mg night.9 years ago. Also Aropax 30mg (paxtine).

  Life improved to varying degrees. Sometimes 95% others 5%. I become addicted and very reliant on my Klono - to help me get through the days, minutes, hours. Hubby worked as interstate truck driver and had to leave job and become a carer for our young kids. Then 2 1/2 and 5. Now 11 and 13.

  My love affair with Klono started, to help me get some peace from the ongoing agony of my condition and to help me be a mother to my kids. The klono never made me great and tiredness, hard to wake up etc - as well as the worry of being addicted to such a powerfull drug, finally led me to the conclusion that I wanted to get off it.

  Have been tapering directly since 14.01.08

going down by about .125Mg every4y 2 weeks or so. It has been absolutely crap, but bearable on some days. I was feeling so positive and wortking with a therapist, on CBT ( Cognitive Behaviour Therapy), relaxation etc. Dr said he would support me and thought that I would probally be better off, off the Klono. But his suggestions were to go off pretty fast. Thank god I found BB's.

Now I am at 1mg Klono and 30mg paxtine. I have been here for 23 days and the symptoms have been extremely bad in the last 2 weeks. Dizziness, nauseous feeling, extremely anxious (like I could climb the walls), weakness, fogginess and so on!!!

Dr said that I may still be unwell and need the klono. But I really want to give life a go without it. Am I waiting too long to taper - I probally already know that answer? I just don't know if I can cope with the symptoms getting any more severe. On other cuts I seemed to stabilise to some degree and that kept me moving forward.

  Has anyone any advice?

I am just really scared, and don't want to go back where I was 10 years ago. A blubbering, greatly depressed and bed bound person, who was not able to look after myself , let alone my family?

  Sorry to offload all this - I still want to be Benzo free - I have just hit the wall and need to figure out a way around it!

          Thanks Deedee Debbie

[[el...]]

Debbie, so sorry sweety.

Listen, I am a big believer in holding at certain  rough times in your taper. Now it's hard to say if you might feel better if you actually go forward with your cut. That is a possibility. You've been holding about 3 weeks. Everyone has a point in their taper where the body suddenly goes, WTF! Stop this damn taper! Sometimes it just takes a little longer to progress to that next cut. That's ok.

My opinion would be to hold just a bit longer and see if there is a little improvement. If you are really getting no improvement in another week or so, you might want to go for it and just cut. Many people are so surprised to find that after a bad period, the next cut actually feels better.

Debbie, what is ME?     

 

You know, using the step down chart means you are cutting larger and larger percentages each time. Have you considered doing a liquid titration, allowing for much smaller cuts, or crossing over to valium? 

[[Th...]]

Debbie,

 

Don't be so hard on yourself, you have been doing great! Like Linda said you may need to take a break from tapering and try to stabilize. Your cuts are getting larger in percentages and I think you did talk about decreasing your cuts when you got back from your trip. Everything you are feeling can be attributed to your w/d symptoms. You should try titration to make it easier if your cuts are becoming unbearable. I think every cut can produce different symptoms. I experienced nausea this morning and have never had that one before.

 

Just relax and enjoy your vacation, and when you get back you can make your decision on how next to proceed.

 

Take care!

[[de...]]

Thanks Eljay and Theresa,

I was at a paticularly bad point yesterday when I posted this. Your words of wisdom seem to make a lot of sense to me.

 

Linda ME is Myalgic Encephalomyalitus ( we call this chronic Fatigue in Aus), so not positive on spelling , but I thing they call it ME in the UK?

 

Yes girls,

  I had a lovely phone call from a lady that goes to the camp site where I am planning to go next week. She even ended up telling me that she had been in a similar place and was hospitalised and put on Temazapam. It is strange that we are everywhere. We just don't know what others are going through. She encouraged me to come next week and told me that the relaxation would be good for me. Atleast the kids can ride and play and enjoy themselves as well and hubby can unwind for the few days that he comes up on the weekend. Why am I such a mother.I think that is a lot of my problem at times. But hey - that's just me. And I have noticed that even though I have been stuck lately, that my moods towards the family etc, have actually been quite good. Patience is not too bad etc. (definate improvement on past times).

 

Will hold on 1mg or possibly consider a cut to .925 ( so small .075). Have contemplated this for the past 2 days but not done it yet?? Will see/.

  Read through Dr Ashtons guide again last night and that has helped to renew my hopes. She mentions somewhere that Klono can be a hard one as it sometimes gets stuck on the GABA receptors???(Something like this)

  I am considering titration or crossing over if I need to, but hopefully I can keep my cuts going- and continue with the direct taper. Will take it day by day for now. Am open to any advice that makes sense.

          Thanks girls. Your kind words and wisdom have picked me up a bit. Life goes on!

    regards Debbie deedee

[[Th...]]

Hi Deedee:

 

That sounds great, have a nice relaxing week and you will have more energy to go on fighting. 

[[At...]]

Linda, ME is Myalgic Encephalomyelitis. It is what I'm presumed to have that has me bedbound.

 

http://www.name-us.org/

 

http://www.ahummingbirdsguide.com/

[[el...]]

Thanks A,

Yes, we call it Chronic Fatigue Syndrome in the US too. One of my close friends has that, along with fibromyalgia (sp?) and MS.

Thank you for the links, I will check them out. 

[[de...]]

Yes Atalanta, doctors presumed that this was my problem tto. But =now I have to wonder?? I was bedbound as well, severely depressed, but the Klono sort of helped me a bit at times. But reading all the symptoms of long term use, makes me wonder??? A lot of my symptoms over the last 9 years are also alike to those of benzo tollerance. This is why I am keen (but very scared) to rid my body of the benzos and see what I am left to deal with?? One step at a time.

 

Thanks to Linda and Theresa for your ongoing support. It is much appreciated.

 

Deb

[[ge...]]

Deedee,

 

I am stuck on my taper too because I developed a ghastly urinary tract infection. I am supposed to cut on Tuesday, but I don't think it will happen. As long as you don't hold for more than four weeks, you should be okay. Sorry I can't type more; I am a hurting unit. I know how horrible it is to be stuck on a dose. I am there right now.

 

Love,

Genie

[[de...]]

Well I took the plunge. Didn't feel all that great but I swallowed a smaller dose on Thursday 10.04.08. It was the best thing that I could of done. The anxiety improved heaps, after about 1 hour. Back to the usual withdrawal symptoms, bit tingly, muscle aches, hyperexcitability(usually experienced on first couple of days of a cut, sweaty etc. But the damn anxiety has mostly passed.

  It was the right thing to do to keep up the cuts. I held for more than 23 days and wasn't game to move on because I felt so yuk. The cut I mad was a small one .075, bringing me down to .925mg klono per day. I have always said slow n steady, but atleast I am moving on.

 

Heading off on camping holiday, to set up this arvo and will be back mon tues for a few appointments then gone for rest of week on Tues night.

  Thanks for all those who encouraged me to move forward. I can now see myself having some quality in my week away(I hope). This damn thing seems to be predictable at times and so damn predictable at others. Catch u all sooon.

                Luv deedee

[[Th...]]

Hi DeeDee,

 

Glad you moved forward!  Have a great time at camp. Talk to you when you get back!

 

Take care!

 

 

T2 

[[tr...]]

This damn thing seems to be predictable at times and so damn predictable at others.

               

 

Isn't that the truth?!?  The one thing we can count on is change, and it can change from minute to minute.  Will drive a person crazy! 

[[de...]]

So true TS. Thanks girls for the encouragement. Talk soon!!!

[[...]]

Hi dee dee

 

Have you considered that part of the problem may be the paxtine you are taking? I don't know if 30 mgs is a large dose or not. But I have read that it too is difficult to withdraw from and has to be tapered. I don't know your history but the klonopin might have been helping to keep the possibly stimulating effect of the anti- depressant in check and by reducing the klonopin you may be experiencing some breakthrough over stimulation accounting for the increase in anxiety. Just a thought you might want to ask your doctor about.

 

John

[[Co...]]

Hi Deedee,

 

I think when we hit a rough patch it is wise to suspend our planned cuts to see if things improve. However, there does come a point where we need to plough on regardless. After 23 days, I think you did the right thing.

[[de...]]

Hi to all,

  Thanks John, Dr said that paxtine is for aniety, so it was unlikely( but who knows!), thanks for the suggestion though. Thanks also to Colin for your continual support.

 

Well I am back and I had a great time camping. Although it was rather wet and I have a lot of work, washing etc to catch up on so will post more in a few days.

  The good news is that the last small cut of .075mg was pretty good and I had a great holiday. Not feeling perfect, but still well enough to enjoy most of the time. I have made another small cut, since getting back and I am now on .850mg. I am happy with my small milestones and thinking of cutting again in the next week.

  I am glad I moved on after getting stuck at half way, it was the best thing for me.Maybe not the easiest!!!

Catch you all in the next few days when everything returns to some sort of normality. Kids still on school holidays and really rainy here. Need I say any more.

  Cheers Debbie

[[pa...]]

Glad your feeling ok! Have fun with the kids  .

Amanda

[[tr...]]

Hi deedee,

 

Welcome back!

[[TP...]]

I'm glad you moved on too, and I'm glad you're back We missed you!

 

Tony

[[de...]]

Thanks Guys, I am planning another taper, maybe tomorrow - down to .750mg. Will see if I can cope with that as the previous cuts haven't been too bad.

 

The holiday was great. It did rain quite a bit at times but we have an old pop top caravan, which kept us nice and dry. We also know quite a few people and families there so we all had a nice time chatting around the campfire, roasting potatoes, marshmallows and of course quite a few of them were having a few drinks. My kids did quite a few hikes and rode thier bikes around the bush and I did som R and R some BBQ cooking, some crocheting and some yakking. The water was too cold for me but the kids did brave it5 on about 2 occasions.

  I am so glad that I went. It was just what the doctor ordered.

 

Went to my Psychologist when I got back and we did some work on Cognitive thinking. Instead of thinking or saying I can't do this or I can't go there - I now have to change these notions into - What if I go there and have a great time, or Maybe I can do that and I will be ok. Will try to work on these positive ideas, to help improve my negativity and fear. I know there are times when we truly are so unwell that even the simplest task is near impossible, but myself personally, I know that sometimes I will not do certain things, because of the sheer fear of my health getting in the way, or because of the possibility that I may not enjoy myself. So I think this Cognitive thinking will be helpful on a lot of occasions

 

What if I didn't go on my holiday?

Yes some of it was a bit unpleasant, but a lot of it was damn enjoyable.

What if I didn't have a good time and what if I sat at home and worried instead?

Well I did go on the holiday and stiil had agreat time!!!

 

Hope this will be inspiration to others to challenge yourselves at times and say - Hey I might be able to do this or Hey I might just enjoy some of my time at a certain event!!!

 

Take Care Guys  Debbie ( I will be trying to remain positive as much as I can) - Even though Taperingf is one of the hardest things I have had to do, at times!!

[[tr...]]

Hi deedee,

 

Thanks for your post, I needed that right now.  I am trying to decide on a trip and can't decide if I want to go or not. 

 

Your trip sounds wonderful to me....I'm glad you enjoyed yourself. 

[[de...]]

Hi TS,

I believe that you do want to go on a trip, because you wouldn't be thinking of it , if you didn't! I hummed and harred for weeks and weeks about my trip and I was stuck half way through my taper in this time. I still started to pack and shop etc but kept telling everyone that I hadn't decided if I was definately going to go or not. I was scared! Scared that I would feel unwell. Scared that I couldn't have coped out of my home if I wasn't well. But now I realise that I still would have had to cope, sitting around all day, laying on the lounge and also keeping up with the kids - being on school holidays. It would be great if you could have a fairly low key holiday, something that isn't a major big deal, where everyone is relying on you to be AOK all the time. I told my kids and hubby to have very little expectations from me, but as it was I even went on a small hike up a very, very big steep hill. That was an achievement for me - big time.

Hope you can decide on your trip - WHAT IF YOU HAVE A GREAT TIME???

  Luv deb (deedee)

[[Th...]]

Hi  Deedee!

 

It's good to hear from you and glad you enjoyed your vacation. Sounds like you are doing better and again on your way to getting off the poison. I am waiting another night and I will probably cut another .0625 to be down to .375. My last cut has been pretty uneventful, a headache here and there is all. We'll be there soon! Take care!

 

 

T2 

 

 

[[de...]]

Excellent news Theresa,

I am only going to cut to .800mg not .750mg as previously stated. Slow n Steady! My cut reasonably uneventful also, Thank Goodness. Am doing a small .050mg cut @= to 1mg dizepam. These are probally a bit too small, but seem to hurt a lot less and leave me with the ability to drive etc most days. How are you breaking your benzo up to make cuts of .0625?

[[TP...]]

Tis wise to go slower.

 

How's the Aussie autumn treating you girl?

 

Tony