The Klonopin Klub

[[el...]]

Good afternoon everyone,

 

Octopii - Yes, I have had symptoms change from hour to hour sometimes.  I get the weakness during the day and then feel better later that night.  Tinnitus usually comes on in the evening and they goes away 2-3 hours later.  This type of w/d makes it hard to plan anything since I never know how I will feel.

 

I went to the dentist today - and I know I will get jaw pain in a few hours.  In fact, if I eat or chew something unusually hard, I will get jaw pain a few hours later.  Was hoping this would get better as I get lower in dose, but it's not the case 

 

 

 

[[du...]]

 

I found a therapist and worked with her associated Pdoc to do a slower taper- 0.125 every two weeks. It worked. I had some definite sleep issues but I battled and was off once again. ... I think I was clean for about a year ....

 

JKS

 

Thank you for sharing your story.  Very sorry for what you have been through.  So during your one year clean you were basically symptom-free until "life intervened"?  That would be hopeful news!

 

Eric/Ducky

[[ea...]]

JKS,

Thank you for telling your story - it all sounds rather familiar to me. Our doctors mean well, but so many of them do not know the whole truth about benzos and AD's.....scary, huh? I give you a LOT of credit for going through this, and for sticking to your guns. I think the American public (and other countries as well-) have been sold a bill of goods when it comes to psych drugs. It seems to be all about "marketing" and money, not about the human lives that get hurt.

Not to say that some people benefit from these medications. There is a proper purpose for all of them, conditions or situations that require them. Ive often said that Ill never take another benzo except....big exception - if I had a terminal disease and needed to calm down.

All you can do is to learn from your experiences and maintain your resolve. I think you will do just fine - you sound like a strong person. Hang in there...things will get better.

east

[[Ju...]]

Yes Ducky, things were good for quite a while. It will come back for me, and I hope you will be recovered soon and never look back. Our world doesnt leave a lot of room to take care of ourselves. When we need healing but are still forced to operate at a high level drugs seem like a good way to keep it all going- until the house of cards collapses. Thanks for your support East. I dont feel strong, but I have been telling myself that I am today!

[[ja...]]

JKS, thank you for sharing your story. It seems like we all have similar stories to some extent. My life was SO screwed up on Klonopin - half my life - and I wonder how things could have been different. But I'll never know. And I've gone May 2012 to April 2013 K-free. So now it's not half my life anymore. And I promise it will happen to you, too, my friend!

 

When I went to the Carrier Clinic last May (where I stopped the K), it was a kind of sandbox for me to try different coping techniques for depression/anxiety. They really wanted to give me EST, but I disagreed. I faced the s**t head-on (big surprise for those here who know me  ). I would exercise every day and run into the common room to do jumping jacks when I was getting anxious. I did Karaoke, and sang "I Will Survive" at the top of my lungs. I mediated and socialized when we had the 15 minutes outside. If it was sunny, I absorbed the Spring sunlight. If it was raining, I stood in the rain and felt it, breathed it in. My husband visited every single day. I played Scrabble. All this with racing thoughts, overwhelming feelings and terrible twitching - and the rest of the sxs. We also wrote down 5 things a day we were grateful for - so I want to do that right now and humor me, maybe you guys can try it?

 

So, I'm grateful for:

 

1. My husband

2. The sun

3. My sweet cat

4. My nephews

5. Growing ability to do yoga

 

Just a thought...

 

Have wonderful, windowful days today! Report back anything you guys did to cope. It will help everyone else 

 

yer jaxy

[[re...]]

Jaxy, I meant to comment yesterday on your cat--I hope he's one of the contest winners!  What a sweetie.

 

Good idea about the gratitude list.  I'm not as systematic as you, but sometimes I do throw my arms around my husband and remind him how he was my rock last summer.  He always says, "I didn't do anything."  But he did, immeasurably.  And last night after my shower I stood in our room and assessed my physical condition.  WOW, I thought--this is unbelievable.  I haven't felt this physically OK in literally years.  And that's even though some symptoms still linger.  So yes, gratitude--it's huge.

 

And yes, JKS, your account of your own experience is thoughtful and moving, and I, too, thank you for sharing it.  All these narratives cast light on our own trials.  We don't want anyone else to suffer, but, at the same time, thank heaven we're not alone.

 

I'm reeling at the news coming from Boston.  I grew up just outside of Boston, and used to know someone who ran the marathon at least once, although I was never a spectator.  I won't dwell on this theme--it's too upsetting.

 

We just have to keep on keeping on.

 

Take gentle care of yourselves, everyone.

 

Peace,

 

Rek 

[[dm...]]

Hey jaxnj,

 

Wow, what a description of your experience in Carrier...the rapid taper must've been horrendous. I can't possibly imagine...or the withdrawal recovery afterwards  :'( . I don't know you (even though we live close) but I can sense you are a very strong person with a lot of character, stamina, and dexterity...to do what you did, and survive, no, THRIVE.

 

Me? I don't know. I've only been on the K for a little over a year, just finished tapering the Halcion, and am determined to get off the K according to my taper schedule (eliminating .0625 mg every 14 days, or so). After holding the K for  42 days (while I cut the Halcion), I made my 5th cut to the K this morning. I grit my teeth!

 

But what I'm saying is that the K and the H are not my real problems...developing tolerance and withdrawals to them just made my real problems that much worse! I've never been in Carrier Clinic...but I have been in Princeton House (where I received ECT 3 times a week for a month), Riverview psych ward, Monmouth Medical psychward, and Kimball NorthEast psychward. Everytime basically for profound crippling crushing major depression and the most determined vivid suicidal ideation. As my sig starts out...many psych drugs...and I do mean many. Antidepressants, Atypical-antipsychotics, antimanics, etc. (there were so many I can't remember them all).

 

And the big question looms ahead when i do get off the K...what then? Will life just miracuously become beautiful? My marriage is in the gutter (25 years - little hope of reapair - codependency dissallows separation), I have no kids, my one surviving nephew lives in Louisiana with the rest of my blood family, my doctor keeps pressuring me to stop working, and he is right, the job has been killing me for years (remember, I'm an aircraft mechanic at Newark Airport)...and I continue to live in a state of chronic depression fantasizing continually about final solutions. The recent news about my cervical issues don't exactly help either (even though I am relieved that two spinal surgeons indicate no surgery is needed at this time). I don't mean to put on my own pity party here, but my life seems so unstable, unpredictable, not at peace.

 

And I am still so very early in my slow taper...I'm terrified of a DETOX or rapid taper. You are very strong and resilient to survive that!

 

So I need a plan for what my life will consist of in disability and off the benzos. Just navigating the disability process is enough to induce major depression. Married to the same person...we don't fight...although the fits of benzorage cause me to vent in rather profound terms. Once I am off the benzos, and on some kind of disability, we'll probably relocate back south to Louisiana, where our families are...and start over.

 

Anyway, thanks for reading jaxnj, its nice to know you live so close.

 

Sad

 

Dave  :'(

[[el...]]

Hi Everyone,

 

On coping techinques - when I am trying to sleep and get racing thoughts, I listen to a relaxation/meditation session sent to me by a psychologist.  I think just hearing another voice distracts those racing/intrusive thoughts to the point of sleep.  This also works with the tv turned down low in the background.  Distraction works for me.

 

Ellen

[[Mo...]]

ellen- meditation at night is great for me too. As im falling asleep I either put on relaxing meditative music or sometimes I put my normal music playlist on and just daydream with my eyes closed. Works for me 9/10 nights.

 

These low grade constant headaches and anxiety fueling/fueled head rushes are just the worst right now. Think I liked it better when my chest/stomach were the problem areas. Never been a good handler of headaches, probably because I honestly dont think I had one until I was 18 lol. Magnesium continues to keep the headaches at a dull low level pain so that's good. Hope everyone is doing well.

[[Ju...]]

Hi everyone,

 

Thanks for your love and support- it means so much to me.

 

I want to be a founding member of the jaxnj fan club. I will survive- indeed.

 

Today dawned a little brighter. When I startled awake in the middle of the night I didnt panic, I just started my back to sleep routine: two sets of breathing exercises, lie on my spoonk mat until it makes my back all warm and tingly (I have no stock in that company, I just love my spoonk!), then lie down in bed and think: I will rest my body even if I cant rest my brain. My body needs to rest. It worked faster than the night before.

 

Boston just reminds me that we have to LIVE everyday. Even if it is a day when there is shaking and crying and headaches. So here are my gratitudes:

 

1) my kids

2) my husband (even in his "cant deal with talking about K anymore" way, he is holding up more than his share of the family while I heal)

3) my weird hormonal skin problems are clearing up

4) our backyard

5) benzobuddies

 

Take care-

JustKeepSwimming

[[Di...]]

ellen- meditation at night is great for me too. As im falling asleep I either put on relaxing meditative music or sometimes I put my normal music playlist on and just daydream with my eyes closed. Works for me 9/10 nights.

 

These low grade constant headaches and anxiety fueling/fueled head rushes are just the worst right now. Think I liked it better when my chest/stomach were the problem areas. Never been a good handler of headaches, probably because I honestly dont think I had one until I was 18 lol. Magnesium continues to keep the headaches at a dull low level pain so that's good. Hope everyone is doing well.

 

Hang in there Mogeii!  Hope your headaches ease-up soon. 

[[po...]]

Hello,

 

I am not sure if I am supposed to start a new thread, or just post... but here goes...

 

I started out about 3 years ago. I had jaw clenching, fist clenching, back pain and insomnia... then i started to have panic attacks. I had one that was 3 days long and I thought I could never go to work again. So went to the doctor and started taking klonapin. It was awesome. It made all of the above magically disappear. I got up to 2.5 mg, but slowly went back down to 1 (which I am glad).

 

I decided to go off of it completely and read about the tapering. My doctor doesnt want to do the valium thing, and thinks I am being overly conservative but has agreed to go along with my tapering. I cut 25 percent and am taking .75 mg. It has been 2 weeks.. and has been rough enough.. I plan to do each taper for 5 weeks. first week was super tweaky anxiety, jumpy, insomnia, nervous, sweaty, out of body feelings... start of second week that seem to go away and now am battling bad poop, headache and lots of muscle pain. I think I prefer these physical symptoms to the mental ones.

 

I am wonder if the point when it 'stabilizes' if most of these symptoms will be very minimal, and also if with every taper you go through you have to start all over again?

 

I also take Keppra for juvenile myoclonic epilepsy. I have been seizure free for about 6 years now. I have also stopped drinking any coffee or beer, and drinking the 64 oz of water everyday. I have Kava Kava, Valerian and GABA on hand. So far havent taken any...

 

Any advice on feeling normal, and if and when you stabilize on a dose? Of COURSE I feel like I am going to feel bad forever right now, and also would just LOVE to stop taking them all together and tough it out, but I know I absolutely cant do that especially with epilepsy..

 

thanks

[[...]]

Good evening my dears, I just got my system back up and running.. it went down yesterday....its always something... thanks for the uplifting comments Jaxy and Rek.... I wish I felt more contemplative.... started new cut after getting back last Thursday... its been up and down since... w/ more tiredness than ever before.  I slept all day yesterday and all night and took a long nap again today.... "can't help it if I'm lucky."  _B. Dylan  Although I didn't sleep more than a few hours before that since last Wednesday... guess I need to just relax and wait for it to come.  I really like the gratitude idea Jaxy... its a good one and does so much to keep things in perspective....and yes, Rek... as I said, I don't recommend the kleenex thing... I just had no other options... (amazingly, I did not swallow it).  I'd left my two mouth guards at home and they look like chewing gum, now, anyway... and I didn't think I ground on my teeth at night either... but, guess what... I do. 

dmw and portia... I can't remember dmw if you were forced off the drug or not, but portia... and maybe you, dave... should consider remaining on some small dose.  I've noticed lots of new memory and cognitive benefits at these lower doses..and that was my primary reason for getting myself off this stuff... but if you have a seizure disorder or other sx that make your life untenable w/o benzos... maybe a different benzo or just a smaller dose would make more sense for you... I couldn't say but would urge you to seek professional advice because each of you have special concerns that in MHO ought to be evaluated.   

Okay, Jaxy here we go...

I see 5 is the lucky #

1.  I'm grateful that I have been able to stay in my own home

2.  I'm grateful for the man in my life... its only been three years but we've come a long way and he's got my back!

3.  I'm grateful for my daughter and her husband who drive a long distance so I can see my grandchildren, and they bring me food.

4.  I'm grateful that I was able to get out on Saturday... the first time, alone, since last Nov. 

5.  I'm grateful for ALL of you, you comfort me on my bad days and make me feel useful, when I am able to reach out to others. 

Boston was heartbreaking... in earlier years i knew family and friends that ran it... not to win but just to make it to the finish line.  I can't discuss it... There is nothing i can do for them but pray... to dwell on it takes my anxiety over the edge... I think it was a miracle my computer crashed yesterday and I didn't learn of it until about an hour ago.  Just those couple sentences and I'm already getting a headache.

Sky... keep on keepin on and Mogeii... you make me smile and JKS, East coast is right... just maintain your resolve... I think the great thing about this experience is that it is so awful that few people, once they get here and find both support and options for coming off ... the idea of reinstating becomes very unpalatable... so resolve becomes its own very powerful tool.  Njoy

 

 

[[po...]]

Well, Ive been seizure free as long as I am taking the Keppra or some other AED med. The klonopin was given to me because of panic and insomnia. I really want to get off of it. Im in a better situation now to handle stress than I was before, and was fine seizurewise without clonopin. Doctor seems to think its fine to get off of epilepsywise, and thinks im being conservative in the taper I am doing but is going along with it. He wanted me to switch from 1 mg, to .5 mg for a month and then go off completely.

 

I am just wondering if anyone can tell me if during the time you are tapering if you should get to certain 'normal' point before you downdose? Or if you are still having tweaky days and other symptoms its okay to go ahead and downdose. I am in my second week, and planned on downdosing in another 2 or 3 weeks.

[[Fl...]]

I just found this thread today and am also tapering off of Klonopin.  Not feeling very well today but wanted to say hi and leave a breadcrumb as it were to find my way back here.

Flutterbye

[[Mo...]]

New posters. Welcome . Klonny Klub is great and you will find a lot of help here.

 

Portiabrown- without epilepsy cold turkey is very dangerous. With epilepsy it's bordering stupid so im glad you know it isn't an option . Stabilizing is very specific to the individual in how fast it comes about and how well you feel after you stabilize. My personal averages while tapering was 2-3 days after cutting symptoms flared up, then between day 9 and day 12 I would settle down somewhat. Again it's different for everyone, listen to your body. Also take into account I cut fairly fast.

 

Another day of coming and going head symptoms complete. Brain wants to be happy and free, body doesn't seem to be ready. It's ok though, the healing continues!

 

 

[[...]]

portia... what Mogeii said and just to add... I never reach states of total comfort or normalcy at my cuts any more... I just keep the cuts w/in 10% of the last dose and hold till sx are manageable before I cut again... I'm down to .30 K from 2.0 K.  I've never reinsated... I have done something that I was advised against but feel it is working for me ... I'm not taking 3 equal doses anymore... I take a smaller dose either in the morning or midday and save the two equal but larger doses for nighttime and either morning or after noon depending on how bad things are when i wake up...sometimes I'm okay in the morning and sometimes I'm not... so I mix those morning and afternoon doses up depending on how I feel.  i always stick to my total daily dose. 

I'd like to say, also, I took Rek's advise and started taking magnesium at bedtime...It works great and I've gone the last two nights w/o any melatonin... also...I gave some to a friend who was not on benzos but extremely anxious.... she found almost immediate relief... I would advise all, as I did her... most people get a lot of magnesium from their diet so don't over do it ...250 mg... works fine for me and you can over do it... so just keep an eye on it and don't think because its over the counter that you can just pop alot of it... too much magnesium can affect your heart.  Good morning everyone... windowful days to all.  Njoy

[[po...]]

Thank you so much for the replies guys!

 

Mogeii, even if that is just how you stabilize, its still a general type idea, and what I wanted to know, so thank you. Regardless if its different for me, it is nice to know there might be some order in it! When you say you cut fast, how fast do you mean? I was planning on 4 weeks at each dose..

 

Njoy How do you cut 10% of your pills?! I keep hearing this is a good idea, but that sounds so hard to do! When I dry cut my pills, no matter how careful I am, they always seem to end up bigger on one side, and I am only going for quarters. I have thought about the taking it throughout the day thing as well. Ive heard many people say that. So it must work for some people very well. I always took my dose at night (because of insomnia), but now it might be a good idea to take part of it in the day since  I am having these nervous days randomly.

 

Before all of this started, I tried every herbal supplement under the sun to sleep. I tried melatonin, kava kava, valerian, passion flower, you name it. of all of those i found valerian to work best.

 

For some reason though, the one symptom I anticipated the MOST was not sleeping, and I have been able to every night! Why? I have no idea! Ive had jumpiness, out of body feeling, weight loss, sore muscles, headache, bad poop, nausea... but no insomnia miraculously...

[[am...]]

Can somebody please help i was only on klonopin for 7to8 weeks i have been tapering since December i have been tapering as long as somebody who took it for years im down to 0.0625mg every other day now if i stop will i die or have a seizure or heart attack i can't go lower insurance won't pay for it no more please somebody who jumped at higher dose or even 0.125mgs please help me my doctor says i will be ok but i don't know and what about acute withdraws that's what im scared of somebody please i wasn't on it that long but i feel this long taper exposed me to the drug longer

[[...]]

First let me say, I just received a notice about "advising."  Don't know if it was just me or it went out to everyone...Anything I say... even if it sounds like I'm advising must be taken to be "My Humble -non qualified_ Opinion.  I'm here looking for help just like most other people on here.  Portia, just be glad sleep is not a problem.. it is for many of us... I know I really appreciate it when I get it.  It really undoes me when I don't and that is often enough that I consider it a problem.  I am able to cut 10% because I use a jeweler's scale.  It has been a Godsend and even w/ it, I have to remember that the scale is telling me the weight of the pill and not the amount of K in it.  I've had a couple of screw-ups not thinking it though on occasion and suffered for it... fortunately... I took less than I should and have not had to deal w/ updosing.  For dry cutting, I don't know how you could do the very small amounts that you will get to sooner or later w/ o it.  Mine was a gift but I know it came from the Amazon.com site....about $50.  The same scale is available through chemical supply but at a much higher cost.  Amy, this is what I would do... it may not be legal... I'd stay at a dose that would be covered but take the dose that you are down to... save the rest ... and use that to cut further.  You are in a great place... having not been on it long w/ no reinstatements and you are down to .0625... so close!  I would then use my scale to continue cutting further... I've read that a number of people jump at .02.. .why they don't take it to .01, I don't know... not there yet.  But, if you can, just keep taking very small cuts... and no matter what happens when you jump... do try to not reinstate... don't let anyone talk you into reinstating, if sx are unmanageable... come here.. we'll help the best we can ... but do be careful... seizures are a possibility and may warrant a med. prof. to reinstate some anti-seizure med that will box all the tedious work you've done to get here.  It really is a catch 22 as docs must stay w/in manufacturer's stipulations or risk liabilty... but your doctor really does need to know what you are doing.  If they can't deal w/ it... find someone who can... I never doctor shopped until this... then I got on the phone.. wasv very honest about what i wanted to do and just kept calling till I founds someone willing to supervise my taper.  She knew nothing... I've had to direct most of her learning but she listens and researches and together we getting through this.  Acute w/d is a possibility whether you taper slowly and evenly or not... the doctor is probably right that you will be okay but it could take a while and it may be rough... just be prepared.... at 7-8 wks... I expect others besides myself are wishing we were in your shoes.  Good Luck.  Portia... you don't mention anything that seems outside the ramifications of K w/d.  I haven't seen anyone, w/ or w/o med. support, fast or slow, dry or wet ... get through this w/o awful sx rearing their ugly heads at some point... I believe it when the docs say many people have no problem... I expect that's true but they aren't here.  They don't come here... if you are here.... you likely need some support and their are non med. ways of dealing w/ the sx... they don't take them away but they will help you cope.  Njoy

[[el...]]

Hi Portia,

 

I am dry cutting k using a digital scale that I bought on amazon.  It seems pretty accurate and I am able to lower my dose in a more consistent manner.

 

Ellen

[[am...]]

My doctor knows what im doing she agrees with everything i say and she did prescribe more but im on the wafers that dissolve i use a pill cutter to cut it in  half i think that i can split the half in to half and take quarters i don't know what half of 0.0625 is i even went two days without a klonopin but got scared on the third day and took a half im on it every other day now it took alto just to try that idea but i just did it and im going to do it again with half in half and go from there  so far my symptoms are the heart stuff muscle switches and a anxiety that sucks some ringing in ears and just feeling weird im just scared of the seizures and acute withdraw

[[...]]

Being scared of what might happen just goes w/ the territory....I know nothing about the wafers... neither doc nor compounding pharmacy thought they were available where I am.... I've read they have a problem w/ absorbing moisture so if you do keep parts of them longer than a day or so... make sure they are in a dry place ... not refrigerated and if you have some of those silica packs that absorb moisture... I'd use those to reduce moisture... I'm not sure why the moisture is a problem w/ the wafers as many people titrate K w/ milk. 

[[am...]]

Well i have been lucky because mine sit open for like two days and they are fine never had a problem with that knock on wood

[[po...]]

NJOY Thanks. I do feel lucky about the insomnia because I have had issues with insomnia for so long! The hardest days so far are the jumpy edgy days, where everything seems way too stimulating. Its early on for me, so I am super uncertain about the future and all. I will just have to see I guess.. First downdose, second week... I hope I stabilize before the next one. At .25 cuts downdosing, the pill cutter or a razor is fine. It looks like thats what you did? 1 to .75 to .50 to .25? Thats my route too..

 

What nonmed sx things help you?