The December 2015-February 2016 Jump Club

[[an...]]

I remember that day. I had to google the phrase you wrote and still didn't know what it meant so I just ignored your comment. HA HA HA! 

[[Ly...]]

Hi guys

 

Thank you for all your support.

 

As you know I jumped cold turkey from the equivalent of 120mgs of Diazapam a day. Made to 3.5 months then seemed to be getting so much worse, so much sicker. I couldn't sleep, couldn't get out of bed, could not function. I was getting sicker and sicker because I wasn't able to drive to get food or even register for home delivery. I did have seizures for around 3 - 4 weeks at the start. Scared me to death.

 

Then burning became so bad, the seizures came back after 3.5 months cold turkey. I was barely sleeping, my body was weakening, because I was just eating anything that was easy. Even to go for a walk ended up a nightmare. I pushed away the few friends I had in my new home,  as I didn't want them to see me like this. So I had no support as I had just moved to another city.

 

Last Monday I went to my GP, told him I couldn't take it anymore. He gave me 2.5mgs of Valium to be taken 3 times a day. After the first night I woke up at around 2.30am with the worst kindling and burning and ended up having to take 5mg Valium at around 2am.

 

The cut from zilch to 2.5mgs Valium 3 times a day obviously wasn't working.

 

So the next day I went and saw my GP again, this time armed with the Ashton Manual.

 

I really don't think he understood how bad it was before I showed him the Ashton manual. I know he did not get the equivalencies.

 

What a joke a Dr prescribing me 6mgs Rivrotril X 3 a day on top of the opiates. I have been taking the same opiate dose for around 2 years, I think all it does now is keep me from withdrawing. So I can understand why the rehab GP did it - although not really, because he could have given me 1mg clonazepam = 20mgs Valium  3 times a day.

 

After 8 years of non stop spinal pain my GP upped my dose of Oxycontin to 80mgs twice a day, plus 2 X 20mgs Oxycontin which I used to take in the middle of the day. That equals 120mgs of opiates a day.

 

I have been taking the same dose for over two years now, my body is used to it. BUT I was in such agony with my spine they could have cut off my arm and I would not have cared. Then I went to a specialist - a Pain Management Dr who was a shrink, and he said I should have been taking a muscle relaxant as well. So my GP gave me .5mgs of clonazepam (Rivratril, Klonopin) 3 times a day.  I honestly thought .5mgs of Rivratrol was the equivalent of .5mgs of Valium a day.

 

When the muscle relaxant was added in my pain subsided for the first time in eight years - the opiates didn't touch my spine nerve pain. So I was functioning on 120mgs of Oxycontin plus .5mgs clonazapam  = 10mgs of Valium 3 times a day. Worked for a long time even with all this medication but I couldn't keep working. My spine pain was still so bad. I had a high pressure job - lots of staff and during lunch I would lie on the floor and cry.

 

The pain was still so bad. So I made an unwise decision to leave work, which in hindsight I should have waited another 18 months and left. I had already taken all my long service leave - took it at half pay so had 6 months off.  I should have been retired on a pension but was in so much pain I couldn't think straight. My big mistake.

 

Then while I was in a rehab hospital after a shoulder operation, my accident somehow dislodged my shoulder and I had a big piece of bone pressing on my shoulder nerves, which the specialist removed. In rehab my spine went into spasm and my nerves were pressing on my spinal cord. My spine pain does cut through any medications, even on muscle relaxants and opiates. 

 

The depersonalisation was the worst aspect for me. Lost so many friends - firstly because I could not do anything because my spine was pretty crushed and the nerve pain was horrific. It cut through any painkiller I was prescribed, I have been taking.

 

Then because my spine pain got so bad in rehab - didn't even notice my shoulder - the Dr in rehab put me up to 2mgs of clonazepam = 40mgs Valium 3 times a day. I cannot believe I was driving and functioning on 120mgs Valium plus 120mgs of opiates a day. My body was so used to the opiates. I thought I was on 2mgs X 3 of Valium a day. That is so dangerous.

 

What I have decided is that I will do my taper gradually. He started me on 20mgs of Valium 3 times a day. Last night and the night before I slept the best I had in 3.5 months. Heaven.

 

Even went out with a friend yesterday and shopped til we dropped. It was fun. What I have decided to do is to try NOT to take the 20mgs three times a day. I will try to cut it to 10mg 3 times a day, and see how it works. We put in a plan for slowly tapering for 12 months. I don't know how anyone could function normally, go to work or school after CT from 120mg Valium. I also got scared because my seizures came back after 3.5 months. In the end I was lying in bed on the last two nights - burning and having seizure again, I couldn't sleep.

 

So because I don't want to waste the 3.5 months of hell - I want to get down to hopefully 10mgs 3 times a day and see how it goes from there. Another member told me it takes 7 days to find a level. So I hope to find a level after that time.

 

Before my accident I remember I was on Alprozam - can't remember how much, I was put on it because I had 3 really awful things happen in a couple of months,  - I stopped it abruptly when I was in hospital and after I came out. Now I am starting to think stopping a benzo that I had been on for probably about a year beforehand may have caused my chronic spinal nerve pain. Makes sense if I stopped suddenly my nerves didn't know how to work properly and that may have caused my chronic spine nerve pain. I had no idea I was on a benzo.

 

That's a small part of my story. Sorry if I have repeated myself. Benzo memory.

 

I admire you all so much. I am still proud of myself for going 3.5 months CT.

 

This board has taught me so much. Thank you all for supporting me. I am now going to eat very healthily and exercise so when I taper off I will be in better shape and will have planned it a bit more.

 

I am in awe of all of you. Thank you

Lysette

[[il...]]

ang ha! Sorry for the confusion!

[[an...]]

Lysette- I hope you find the peace you are seeking. But I remember reading your post where you were thinking about reinstating and I don't remember you ever saying the seizures came back. Very scary indeed. Good luck to you!

[[an...]]

I felt like I was in a partial window today and maybe I overdid it I don't know.

 

Tonight I feel this internal pressure and squeezing feeling from the waist up basically, then my head feels pressurized too. Does anyone else feel like this? Tell me I'm not alone! The fear is back too and I'm scared.

[[il...]]

AngI can't lie now that you brought it up. I was afraid you'd be overdoing it? But, you don't have a choice so I didn't want to say anything. 😕

 

if it helps, my head feels pressurized off and on through out the day. It's so mild now though. I do have a lot of paranoia, fear and intrusive thoughts still, regardless of my "good day." It's a good sign that we can recognize how off the fear and paranoia are - you know that. I try to laugh at mine. As far as the thoughts, for example, you could say dinner to me, and I'll think of the oven exploding or worse. It makes zero sense and it's scary. It'll all lesson.

 

I have to believe even if you're overdoing it, you'll heal fast due to all the exposure. 👍🏼

 

 

Lysette

 

You don't have to justify to anyone. I CTd off the equivalent of 80-120mgs of diazepam (sometimes more) I get it. We all do. It's bad regardless. I pray for you! You'll do this when you have he strength. A good long taper does sound, from what others say, much more manageable.

 

 

[[an...]]

So after I typed that, I made myself do day 7 of my 30 day yoga group and even though I was filled with fear and the thought that I will have a seizure (again) I got through it. I ate dinner, still afraid, ate an orange and now I'm calm again.

 

I just don't get it. Am I pushing myself too hard or am I doing this TO myself with all the negative scary thinking / focusing on symptoms so much.

 

All I know is this shit is exhausting. Part of what makes windows bad is that you can feel pretty good so then when a wave / or even an hour of panic comes, it makes you totally forget you were normal an hour before. Mind fuck for sure.

 

Hope I don't offend anyone with my language. 

[[an...]]

Thank you for answering, seriously, thank you.

 

I mean I've felt pretty decent this week. Surprised how good I've been feeling really with just a few really bad hours. Overall, I would say more mini-windows that horrific waves. Not sure what that means and don't want to overthink it.

 

I'm not the stay at home kind of person though so when I think I may be overdoing it, I don't know how to just lay here all day without leaving the house. That's really hard for me lately and I tend to feel worse. I have a few appointments tomorrow too so maybe I'll rest in the evening. All I know is the Yoga and meditation and positive self-talk helps me SO MUCH.

 

Thinking that next month will be better than this month also helps me.

 

illneverdothisagain - everyone says months 3/4 are the worst and suck. Why do you say that too. Like how is months 3/4 different than 2 or 5 ? I think it sucks because i feel like 80% healed then I drop to 20% healed in a matter of minutes and am plunged into hell again thinking this will be permanent and not able to have any rational thought.

[[il...]]

Well you can tell I'm in a window because I want to write a story about this. I haven't written in forever. I'm going to finally publish my first book while I'm feeling better!

 

"Here. Just take this..."

 

 

 

The fight for my mind, body and soul. A story of accidental dependence

 

Between doctors, rehab, "the program", attempted therapy... I can't not document this. ANYONE who wants to add an excerpt, please send me a PM. I'm going to add excepts from others at the end.

 

Happy healing, my BBs

[[an...]]

But you didn't answer my question. Why does months 3/4 suck so bad.

[[Er...]]

Lysette: I'm so sorry you went through that.  Honestly, that's borderline malpractice to c/t you off of 120mg Valium a day.  I hope you continue to heal!

 

angI'm not sure anyone knows why 3/4 months are generally tough on people.  My pet theory is that's when a lot of us are starting to feel better, or get used to not feeling very good, so start to push ourselves which overloads the CNS and our body is telling us to take it easy and not overdue it.  It's also not the same for everyone.  My 2nd month (February) was by far my toughest month to date and I'm exactly 3.5 months off.

 

The last couple of days have been pretty good for me so I'm really hoping I don't have any more completely debilitating waves.  I had some more night sweats last night but I haven't had any 4am surges in about 1 week it seems like.  I'm definitely expecting more but 1 week is a pretty good time frame for me.

 

The cog fog doesn't seem to be getting better.  I woke up today sure it was Wednesday.  My wife had to show me her phone to convince me it was Friday.  So for some reason this week has been kinda blurry.  The good news is it's Friday and not Wednesday 

[[il...]]

eric my theory?

 

 

Post acute wd hit me like a tsunami in the second month. January 20th to be exact. Symptoms crept up in both existence and intensity over the first few weeks. I just think the first wave of PAWS is as bad as acute with no medication to help me get through it like I had in treatment.

[[Be...]]

Haven't been this bad on benzos, including tapering, or in acute. To me, the getting slammed is not just PAWS but the culmination of neurotoxins in my body causing inflammation and hormonal dysregulation. Every day I get worse. I feel like I'm losing it.

[[il...]]

Bennie please hang in. You're not alone, you're not losing it, and it does get better. I can promise you that.

[[pe...]]

Hi all:

 

I just read through all the posts I missed yesterday, and my poor foggy brain just won't hold it all.

 

Bennie, I am sorry you are feeling so whacked out.  I hope that changes.  I find that these awful feelings do change and there is some hope just in that.

 

Lisettee, You are going through some very, very rough times.  You are heroic for trying to take your situation by the horns and manage it.

 

Illneverdothis, congratulations again on the book.  What is it about.  Are you just playing with the idea of writing something about "accidental dependence"?

 

EricSS, I get confused about what day it is every day.  That could be withdrawal.  But being retired also messes up day recognition.

 

ang1111  I am glad you like your therapist.  I have been doing EMDR for some time now.  Generally it helps.  Though some times I feel extra tired the day after.  My wife however only feels calmed and energized by it.

 

bejeste  I am sorry about the dark cloud that has settled in.  But you have seen the light before and you will see it again.

 

Time for me to meditate.  Got to stop thinking bout past and future.  That would be easier if the now were not so painful.

 

Oh, I am not offended by the f-word at all.  I use it liberally.

 

Hang in there, all.

[[an...]]

Pensionier1 I like your comment about the present moment. So very true sometimes!

 

I'm gonna take a nap I think.

[[il...]]

My story. It's going to start the day I was prescribed them. Chapter 1 is going to be the doctor appt. then chapter 2 is going to jump to my arrival at treatment. I'll do flashbacks of tolerance and what not, but I want to focus on this hell. So many stories of lack of knowledge, ignorance in general, so much to write.

[[il...]]

I meant my story, but it's obviously so similar to everyone else's. That's why I want excerpts, though. I'd like to change names but still offer a place for voices to be heard.

[[pe...]]

Hey, Illnever, that story.  Our story is certainly worth telling.  I have thought about giving it a go myself.  But I always stall.  It's a pretty big story.  I might though try to write a statement for you if you let me know more about what you have in mind (for the statement).

 

Mostly, I think, people should never be in the position of not knowing what they are getting into when they start a benzo.  I know I was not completely informed.  But that was back in 1994 or 3.  I don't much know who knew what back then.  The internet was not as it is now.  In fact, at that point, it barely was.

 

ang1111.  EMDR seems all about nowness.  What are you feeling exactly now in your body.  EMDR recognizes that now may be painful indeed, and from that perspective sees thoughts about the past and future as forms of flight from the pain of the immediate.

 

I had at first a hard time getting in contact with what my body was feeling. But I am better at it now.  Practice.

[[an...]]

ang1111.  EMDR seems all about nowness.  What are you feeling exactly now in your body.  EMDR recognizes that now may be painful indeed, and from that perspective sees thoughts about the past and future as forms of flight from the pain of the immediate.

 

I had at first a hard time getting in contact with what my body was feeling. But I am better at it now.  Practice.

 

Wow, I did not know that. That is very promising for me. I believe that is true too. The present moment can be very scary indeed!

[[Ho...]]

So confused on all the different threads. I think I found my December club. I'm doing so so. I think I feel a wave coming on. I'm 4 months today. Anyone wake up freezing? It's been pretty common since I've tapered, just never seen anyone post about it. Hope all is well.

[[il...]]

pensioner welp, I began tonight. I just wrote chapter 1 which took place in my doctor's office when I first got the script, and it cuts riiiight to the horrific, terrible experience I had at treatment -- chapter 2 starts at intake. I'm already happy with. This will be therapeutic as well.

[[an...]]

hey illneverdothisagain - I have a question for you and anyone else who feels like commenting. I saw somewhere where you said healing has been pretty linear for you. I kind of agree with that. As in, there has been a gradual decline- of course over weeks at a time of some symptoms for me. For instance, my scary thoughts are almost gone, depression has pretty much left, dizziness almost gone, zaps and twitches almost gone. So a gradual decline of a lot of the scariest symptoms.

 

Of course i still have BAD vision problems, HIGH states of anxiety (even this is better than it was just a month ago).

 

So my question is, people say it comes back. Does this mean only the symptoms we think are gone will come back or is it possible to have new scary symptoms come back. For instance, I've never had the insomnia symptom- yes it takes me 2 hours to FALL asleep but I still get to sleep. Is it possible for symptoms like that to just show up when you never had that symptom before. I don't think I have severe pain either, it's pretty mild compared to others.

 

I'm just wondering so that if a new symptom does show up I will be able to blame w/d instead of something I would need to go to the doctor for- I am trying to avoid doctors for the rest of my life if I can help it.

 

I am happy you are writing this all down. I have been too but more of in a creative writing sense. I have a few poems about withdrawal and at this point I don't even want to revise them or look at them if I don't have to.

[[il...]]

Call me Steve, Ang. And whoever else. Please feel free. (if you guys remember. Our cognition is less than stellar right now, though, so I understand)

 

You raise some really good questions that I've asked myself many times. Personally, I listen to 2 friends I have (who both say to stay off this website) regarding symptoms. I'll share with you an overall statement about myself which fits what they've told me. (They only say to stay off this website unless one is smart/clever enough to read between the lines when it comes to certain people, if you get my drift, which I'm sure you do.)

 

I guess "by definition", it's not linear. But yes, I've experienced a gradual, yet steady decline in everything. Even flare ups aren't as bad as the one that came and went before. I have to say, I would find it very hard to believe that random symptoms come and torture the hell out of us at, say, 8/9 months -- knock on wood. In fact, I can't say I've seen *anything* "new". Quite the opposite. I've seen a handful disappear, and the rest become more mild.

 

One of my friends is very, very active in NA. He's out in Cali and kind of high up. I actually met him because, before learning about benzo w/d syndrome and the Ashton and BB, I called NA hysterical. I was accidentally connected to a receptionist on the business side of NA, not the clinical side, and the receptionist knew exactly what I was going through because of our now mutual friend, who she connected me with. She talked me down, reassured me of my sanity, and connected me with a good friend of hers who is now my friend. We talk often on the phone. He went through Klonopin w/d. He even said today, even though I'm experiencing the best wave yet, expect more dips, but they truly improve each time so much that eventually they're nothing. I've asked him before about the new symptoms, and he said he's not too familiar with that. He said he's not a doctor of course, but, he's never seen symptoms too "new and scary" popping up after a significant amount of healing time has been put in. Now he did a 10-month taper prior to jumping, but he said at 6 months he was fully functioning. I can only pray. I didn't taper at all so I think I have a bit more healing, but we'll see. His sponsor used benzos for 33 years and healed. A sponsee of his healed from benzos, too, without any crazy new symptoms popping up.

 

Can it happen? I'm sure. I give everyone the benefit of the doubt and don't want to sound like I'm promoting doubt of others on here. Ha! Do I believe it'll happen to me? Not at all. (I pray not, anyway) I have to believe that happens to those who, as sad as it is, reinstate, drink, take other meds that may affect recalibration, etc. Wouldn't you agree?

 

I can really talk, so I apologize. I hope this helped. I know you're intelligent enough to pick out the credible sources we have, and there are many on here who I do not consider "credible".

[[an...]]

Amen and thank you for saying all that you did. Yes, I've been told to stay off here too and I've actually been trying to understand why I do come here so much. For me, I know the answer. I don't have much support, you guys understand, I need that human connection right now. That's why I come here a few times a day. I'm sure this won't be forever but for now, I need the reassurance and companionship that we all have in this thread especially.

 

So glad I asked and you answered about this. And thank you for speaking between the lines because I'm definitely reading between them. There are threads I absolutely have to stay away from / whole areas of the website because, honestly, they scare the shit out of me. Acute was horrific for me, you too, since we both did c/t. I don't need anymore fear, my head creates it all day long!

 

So.. if I am feeling pretty good, considering, right now. Like I would say this whole week has been like 80% windows - of me feeling about 75% baseline- I hope to expect this to continue since it basically has been improving since acute.

 

The main reason I am asking about this is because I was invited to a conference in July and I would need to fly there. It's all expenses paid so I don't want to say yes, let them buy my ticket, then be too sick to fly. So based on how I'm feeling this last 2-3 weeks, should I be pretty confident that I can make it? I'm pretty confident that by then I'll have 6 months healing time and hopefully well enough. I go to school so really what's the difference except for scenery. It might be good for me.