Post Benzo Freedom Withdrawal Support Group

[[ro...]]

Hi Sunny:

 

The DPT shot is dyptheria, pertussis and tetanus (for whooping cough prevention). 

 

How are things in your post benzo world?

 

Rocko

[[Su...]]

Hi Sunny:

 

The DPT shot is dyptheria, pertussis and tetanus (for whooping cough prevention). 

 

How are things in your post benzo world?

 

Rocko

 

Oh it was an immunization...I wondered about those while in benzo w/d..you feel it really made you feel bad? Dang, can we do anything?!

 

I am in a horrible wave right now..I can't believe i was just celebrating my 1  yr off benzos anniversary a week ago...I feel horribly nervous ALL the time... I am getting desperate here! I have been researching beta blockers today wondering if I could get my heart to stop beating so darn fast and hard if it would help me not feel so scared and nervous.  No clear answers and for me, not worth the gamble.

 

So here I sit, in a horrible wave, terribly disappointed once again by my recovery or lack there of.  :'(  Bet you're sorry you asked!  :'(

[[ro...]]

Hi Sunny:

 

Not sorry I asked at all.  I am in a bad wave myself after a 12 day window of sorts.  I don't know about you, but I thought the worst part of getting off Benzos would be the taper.  I never anticipated the worst being the recovery from the taper. 

 

And you deserve a big kudos for your one year off.  Dang - sorry to hear you are in a horrible wave with anxiety stuff.  I had only mild levels of anxiety during taper and post taper.  But last nite, the anxiety came on in 1 hr. waves, stop and then start up again.  What's with this stuff?  I feel like a semi-crazy person going through this. 

 

God help us bigtime,

Rocko

[[gi...]]

Hey Rocko & Sunny,

 

I'm sorry to read you're both not doing so well at so far out. Sadly, you're not alone... but know that you will continue to improve.

 

I feel bad for the folks who think once they get done with tapering that they'll be free and clear. It is only when the stuff is out of the system (which only takes a matter of months) that the body then has to operate on its own, for the first time in years.  Your CNS has been atrophied, in a way. Like a muscle that's been atrophied, it takes work and time to get it working again.

 

In the meantime, acceptance and adaptation are essential.  Know that waves happen but also know that you're getting stronger and are more capable of handling them. My symptoms amp under times of stress. I absolutely hate that I suffer from them; that even after 2 years and 10 months I'm still held captive by my own brain.  But it is what it is.

 

Acceptance is really, really hard. But it's crucial.

 

Hang in there,

 

ginger

[[Su...]]

Thanks Rocko and Ginger..."acceptance" is crucial but really really hard sometimes..especially on a day like today. I feel so nervous i swear I'm gonna have a stroke or something. Nothing works anymore to help..I used to drink Calm (magnesium powder), and Chamomille tea, and L-theanine..nothing helps anymore..never used those things often, always saved them for when I just couldn't take it anymore, but I've got nothing in my tool box right now..though I am craving some peanut M&M's! Think it's a sign? lol

[[...]]

Hi Everyone!

 

I am not a frequest poster, but I am a frequent reader

 

I can't believe this all happens even AFTER the benzo taper nightmare is over. It's so disheartening - to say the least.

 

I have a question that I hope someone may be able to help me with...

 

I was originally prescribed K for insomnia. Oddly enough throughout my taper I slept like a ROCK - a full 8 hours with no waking every night for months - it was unreal, but a very welcome relief from the suffering during the day. Long story short, the better I began to feel the worse my sleep became. Now that I am off - just a few days shy of 2 months, my sleep is definitely returning to pre-benzo state. EVery week and a half I suffer from 2-3 nights of horrible insomnia averaging about 4 hours a night of broken sleep. After the second night I am a zombie, today, after a 3rd night my body and mind are starting to give out on me.

 

Sooo, my question is, is it okay to periodically take an OTC sleep med like Unisom during a bout like this? Will it set me back? I have tried melatonin sporadically and it does not seem to help at all.

 

I exercise regularly, limit caffeine except in the morning, go to bed at the same time, etc. etc. etc.

 

If anyone can help me with this it would be greatly appreciated. Thank you and much healing to all!

[[ji...]]

Hi Amy,

 

I'm struggling bad with insomnia. I haven't had one night of decent sleep in 8 months. I regularly take either one benadryl tablet of 1/2 of the blue unisom sleep tabs to get about 4 hours.

 

I don't think they work on the same receptors. Some of us just have to do something to get any sleep we can. I also have a baby that wakes up often and complicates my sleep situation. I wouldn't stress about the OTC meds too much. I try to alternate them and some nights I got without them in order to not become tolerant. I hope that helps.

 

Jittery

[[Li...]]

Hi Amy,

 

I take benadryl or melatonin when I can't sleep, and haven't had any problem with becoming tolerant to them as long as I don't take them more than one or two nights a week. I think you'll be okay to use OTC stuff as long as it's not every night.

 

Libby

[[ro...]]

Howdy Post Benzo Peeps:

 

Sticking together to weather the rest of it. 

 

Ginger;  Thank you for your wise words.  I did focus solely on the taper and thought that the recovery would be easier.  Not true for me.  I appreciate your analogy to the CNS like a muscle that has atrophied.  I used to exercise a lot so I get that completely.  How long did it take for you to get your sleep going in the better direction?  So many post benzo curious insomniacs here. 

 

AmyA; kudos to you for getting through to cross the finish line.  Sleep is an issue for many of us.  I now appreciate 3 hours of straight sleep and pre-benzo, I never would have.  I was chugging along doing fairly well until August.  And September has been worse in terms of some slump in my sleep and other WD stuff.  Riding the waves and enjoying the windows. 

 

Sunny; hope your anxiety calms down for you.  A big congrats on getting to your one year anniversary.  Could be turning the corner any day/week/month with the anxiety stuff.  Did the theanine help you?  Some people like it and others do not.  I'm thinking of trying it.

 

Libby and Jittery; we are getting there.   One day at a time.  A few days of  8 hrs. sleep would suit us all real fine. 

 

Best regards,

Rocko

[[Su...]]

Rocko- yes I did feel the L-Theanine helped. I tried it around 7 months off and it did bring me some relief. However, as with all things in benzo w/d, do it sparingly..I think that if you use something often it stops working..I saved it for the tremendously bad days. I also found that the magnesium drink "Calm" helped a lot!

 

I had a great day yesterday practically nervous free and feel pretty darn good today also after a GREAT night's sleep thanks to 55mgs of Trazodone and L-Tryptophan...I can tell I'm healing enough for some of those things like L-tryptophan to actually help.

[[wi...]]

Wow!  Thank you for these posts.  I had no idea that the recovery would be so hard.

 

After 12 years on clonazepam and the last 2 years trying to get off (the last 100+ days as liquid titration), I thought the taper would be the hardest.  I got feeling pretty good just before I started the liquid taper.  The end was harder, but no way near as hard as the last 24 hours.  I have been off for 4 days and I'm experiencing the same horrible symptoms that I experienced when I was taken off cold turkey.  Of course, I thought that if I did the withdrawal slowly and with liquid that I would be home free.  I just had no idea.  I'm tremendously discouraged, but feel a little better knowing that I am not the only one. The people who have been experiencing this with me are so excited that I reached the day of my last dose.  They are expecting me to jump right back into life.  They certainly aren't expecting me to be worse, which is what I am!  I feel like I'm back at the beginning, but I do realize that I am no longer putting this horrible drug into my system.  There is something to be said for that.  I'm trying to fight off the fear that I will never recover.  The past two years have aged me tremendously, and the withdrawal at one point literally almost kill me.  I'm left speechless.

[[st...]]

For many members, IMO, going slow doesn't necessarily mean you will have an easy landing but what it may do is prevent protracted withdrawals and that is very, very important.  You have accomplished the first part, wishIdknown, now the second part is what you have to concentrate on, as you well know.  Hang on tight.  I am rooting for you.

 

Patty  xo

[[...]]

WishIdKnown - many of us, myself included, have done slow tapers. I felt great my first few days off but was then hit with two particularly nasty days in the first two weeks of jumping that were reminiscent of my c/t days. I couldn't believe it. After that though I haven't experienced anything as bad as those two days.

 

I believe some of the members had told me to expect sxs to peak at two weeks off, and they definitely did. Since then things have been steadily improving. With windows lasting longer and the waves not as long and severe. Hold on, things will get better from here...and CONGRATULATIONS!!! :yippee:

 

A BIG THANKS to all the buddies who replied to my question about OTC sleep meds. I have tried melatonin and it did nothing. I took a unisom last night and had 10 - yes, I said 10!!! hours of sleep! I haven't slept like that in months and months. It was amazing and much needed. I now know that when I have a bad run of two or three days of next to no sleep that I can take a unisom for some relief. I will use it as sparingly as possible so that when I truly need it, it will bring relief.

 

Thank you all!

[[ro...]]

Hi Wish:

 

Big congrats to you for your successful taper! !  I did a slow taper off a low dose of valium and continued to feel improvements in sleep, nite sweats, intrusive thoughts, and jaw pain for the next four months.  I thought I was coming out of the woods.  But month 5 (start of Sept.), and I have had 4-5 days/nites of slump, wave time twice this month.  Nature of this recovery.  I agree with Stoney that a slow taper prevents the protracted stuff but you will still have the bumps in the road days.  We'll help each other through the months ahead.

 

AmyA; so glad you slept 10 hrs. -- woohoo.  I took 25 mg Unisom the other nite and slept 8 hrs.  It's like I died and woke up in heaven.  I completely concur with you about sticking with anything nitely.  Even though I have taken melatonin during and post taper, sometimes it doesn't work.  But even the occasional Unisom will not work if it is a bad nite of WD.  I do like Calms Forte too.  (3) of those helps get me back to sleep.  I have come to believe that there are degrees of WD sxs.  Some will let us sleep with frequent wakeups, and others that will keep us up all nite with other sxs too (heavier WDs). 

 

Sunny; you might be pulling up and out of your wave.  Thanks for the info on Theanine.  I have been waiting to try some on those nites when "the pestilence comes."  I have thought the same thing about healing enough for other stuff that would not work and that now is working due to our time off.  Healing is happening day by day and month by month.  I can hardly wait for my one year anniversary to get here.  I just want more healing in the meantime.  Hope your window continues nice and long!!

 

I log all my WD sxs and sleep nites and found the following info might be helpful to post benzo beeps:

 

April 2011 - (my jump month) - 12 nites of <5 hrs. sleep with 12 nites of heatups

May 2011 - (month 2) - 10 nites of <5 hrs. sleep with 7 nites of heatups

June 2011 - (month 3) - 8 nites of <5 hrs. sleep with 3 nites of heatups

July 2011 - (month 4) - 6 nites of <5 hrs. sleep with 3 nites of heatups (and could get to sleep and stay asleep longer)

Aug. 2011 - (month 5) - 7 nites of <5 hrs. sleep with 9 nites of heatups

Sept. 2011 - (month 6) - 11 nites of <5 hrs. sleep with 13 nites of heatups (this is my biggest wave month)

 

Definite improvement pattern in the first 4 months. 

 

We're doing it and getting through it.  Yeah!!

GBYB,

Rocko

[[ve...]]

Hi Verti! I logged off before I saw your shout.  How have you been doing?  I was thinking of you yesterday. Yes, there are 2 potter movies we've not yet seen.  Our little video rental place closed down so I'm hoping at least one of them will be on TV soon. I really need to get by this thread more often to see how some of my buddies are doing.  This place keeps me hopping and I don't get around to the threads I'd like to. I'll check back later today when I return from "the city".

 

Hi Missy.  Hope all is well with you.  Sorry it's taken so long to reply but we've just been to Orlando where we took my son to the Wizarding World of Harry Potter at Universal's Islands of Adventure as well as a visit to the Disney EPCOT Park.  Without spoiling, let me say that Harry Potter was a fabulous ride, best ever according to my son.  However, it was slightly more jerky than I expected.  I won't say more than that.  I rode it three times and had no adverse impact despite my history of vertigo.  My wife and son rode it a couple more times, three times as single riders to cut back on the wait.  The key is after going through the normal line which is worthwhile since there are things to see while you walk through the line, if you wish to ride multiple times, the single rider line was much faster.  We were able to get on the ride twice in less than 10 minutes using the single rider line.  The Spiderman ride also at Universal's Islands of Adventure, which I had previously heard from friends was the best ride ever,  was a slight problem for me as there are a couple full spins on that simulator.  I only rode it once due to fears of vertigo after experiencing a little bit of dizziness during the  ride, not terrible but enough to keep me away after Spiderman took care of a few villains .  The Poseidon attraction is worthwhile at Islands of Adventure despite it being a walking experience.  I stayed away from Tower of Doom and the Hulk roller coaster which had a loop and no doubt fun for those who like those kinds of rides. I did try the smaller more family friendly coaster ride in the Harry Potter section, called Flight of the Hippogriff which was just ok.  By the way, EPCOT is having an International food and wine festival this Fall, which is worth checking out as well as the fireworks at night.  Also one of my favorite all time attractions, "California Soaring" is available at EPCOT. Make good use of fast track and cut down on the waits.  My son also loved the Test Track ride there which we also rode multiple times.  Also if you're a Michael Jackson fan, the 3D Captain EO at EPCOT is nostalgic and worthwhile.  This was my first time back to a full scale amusement park since my valium taper ended a couple years ago.  Even before the valium, I was not one for loop roller coasters or rough rides.  I was glad to be able to take my son to two parks and enjoy many of the rides with him.  He's not into loop roller coasters anyway. It was a great weekend.  I will try to reply to some of the other posts in the coming days.

 

Cheers,

 

Vertigo

[[ca...]]

Hi Verti!!! So glad to hear all is going well with you. Sounds like you had a wonderful time in Orlando, that is great!!! The rides sound like a lot of fun.

[[ve...]]

Wow!  Thank you for these posts.  I had no idea that the recovery would be so hard.After 12 years on clonazepam and the last 2 years trying to get off (the last 100+ days as liquid titration), I thought the taper would be the hardest.  I got feeling pretty good just before I started the liquid taper.  The end was harder, but no way near as hard as the last 24 hours.  I have been off for 4 days and I'm experiencing the same horrible symptoms that I experienced when I was taken off cold turkey.  Of course, I thought that if I did the withdrawal slowly and with liquid that I would be home free.  I just had no idea.  I'm tremendously discouraged, but feel a little better knowing that I am not the only one. The people who have been experiencing this with me are so excited that I reached the day of my last dose.  They are expecting me to jump right back into life.  They certainly aren't expecting me to be worse, which is what I am!  I feel like I'm back at the beginning, but I do realize that I am no longer putting this horrible drug into my system.  There is something to be said for that.  I'm trying to fight off the fear that I will never recover.  The past two years have aged me tremendously, and the withdrawal at one point literally almost kill me.  I'm left speechless.

 

Hang in there WishIdknown.  I read that you may be experiencing the "same symptoms" as your cold turkey. I initially did a c/t back in 2008 but ended up reinstating before I decided on a slow taper in 2009.  While I experienced a myriad of unpleasant side effects while tapering, none were as intense as that first few weeks after the c/t.  There were a few periods where I had pretty high anxiety and sleeplessness, but not quite as "bad" as after the c/t.  Everyone has her own experience though.  The main thing is that you're off the poison now and although the first few months or slightly longer may have some challenges, things do eventually get better .

 

Best,

 

Vertigo

[[wi...]]

Thanks for all the encouragement!  It has been a few days and I am a little better.  I have settled into the thought of this being a long journey and am dealing better with the anxiety, pain and sleeplessness.  The onset of the symptoms was such a shock since I had not paid any attention to what would happen once I was off the drug.

 

I'm extremely thankful for the encouragement and knowledge that I am not alone.  That makes so much difference.

 

Onward and upward!

[[ve...]]

Thanks for all the encouragement!  It has been a few days and I am a little better.  I have settled into the thought of this being a long journey and am dealing better with the anxiety, pain and sleeplessness.  The onset of the symptoms was such a shock since I had not paid any attention to what would happen once I was off the drug.I'm extremely thankful for the encouragement and knowledge that I am not alone.  That makes so much difference.

 

Onward and upward!

 

Hi Wish. Glad to read that you're doing better in the last few days.  The journey may be longer than originally anticipated, but I am confident that you will get through it and be very satisfied to be off the benzo in the long run.

 

Onward

 

V

[[gi...]]

Hi Everyone!

 

I am not a frequest poster, but I am a frequent reader

 

I can't believe this all happens even AFTER the benzo taper nightmare is over. It's so disheartening - to say the least.

 

I have a question that I hope someone may be able to help me with...

 

I was originally prescribed K for insomnia. Oddly enough throughout my taper I slept like a ROCK - a full 8 hours with no waking every night for months - it was unreal, but a very welcome relief from the suffering during the day. Long story short, the better I began to feel the worse my sleep became. Now that I am off - just a few days shy of 2 months, my sleep is definitely returning to pre-benzo state. EVery week and a half I suffer from 2-3 nights of horrible insomnia averaging about 4 hours a night of broken sleep. After the second night I am a zombie, today, after a 3rd night my body and mind are starting to give out on me.

 

Sooo, my question is, is it okay to periodically take an OTC sleep med like Unisom during a bout like this? Will it set me back? I have tried melatonin sporadically and it does not seem to help at all.

 

I exercise regularly, limit caffeine except in the morning, go to bed at the same time, etc. etc. etc.

 

If anyone can help me with this it would be greatly appreciated. Thank you and much healing to all!

 

Amy I was the same as you. My sleep vastly improved when I was tapering but then once off (and off ambien) my sleep got worse.  Now I take l-tryptophan, l-theanine, calcium, vitamin e and flax oil for sleep. It gives me about 3 hours before I start tossing. Sometimes I only sleep 2 hours, sometimes 5, but usually I sleep about 4. 

 

It's been 2 years; I'm getting used to it.

 

ginger

[[gi...]]

Howdy Post Benzo Peeps:

 

Sticking together to weather the rest of it.   

 

Ginger;  Thank you for your wise words.  I did focus solely on the taper and thought that the recovery would be easier.  Not true for me.  I appreciate your analogy to the CNS like a muscle that has atrophied.  I used to exercise a lot so I get that completely.  How long did it take for you to get your sleep going in the better direction?  So many post benzo curious insomniacs here. 

 

 

 

see my above post... 4 hours is a definite improvement. I used to sleep 2 hours a night!

[[wi...]]

regarding sleep - When I wake up after 3 hours of sleep, I put a bean bag (used in yoga, made for the eyes) over my eyes and it seems to calm my brain enough to get 1-2 more hours of sleep.  The sleep is not as deep as the initial 3 hours, but it helps.  At the same time I also take L-Theanine and GABA.  Only needed this on and off during taper, but in the last week since going off I need it every night.  I can't bring myself to take any OTC medication.  Scared to death!!

[[gi...]]

Wow!  Thank you for these posts.  I had no idea that the recovery would be so hard.

 

After 12 years on clonazepam and the last 2 years trying to get off (the last 100+ days as liquid titration), I thought the taper would be the hardest.  I got feeling pretty good just before I started the liquid taper.  The end was harder, but no way near as hard as the last 24 hours.  I have been off for 4 days and I'm experiencing the same horrible symptoms that I experienced when I was taken off cold turkey.  Of course, I thought that if I did the withdrawal slowly and with liquid that I would be home free.  I just had no idea.  I'm tremendously discouraged, but feel a little better knowing that I am not the only one. The people who have been experiencing this with me are so excited that I reached the day of my last dose.  They are expecting me to jump right back into life.  They certainly aren't expecting me to be worse, which is what I am!  I feel like I'm back at the beginning, but I do realize that I am no longer putting this horrible drug into my system.  There is something to be said for that.  I'm trying to fight off the fear that I will never recover.  The past two years have aged me tremendously, and the withdrawal at one point literally almost kill me.  I'm left speechless.

 

 

If you haven't read it, please read my post from 9/29.

 

Additionally, for 80% of former benzo users, the average time it takes for symptoms to abate is 3-6 months.  I recommend you take excerpts from ashton's report and give them to your closest people so they understand that you're just beginning, not ending, your healing.  I'm 2 years 9 months out tomorrow and still many people in my life find it hard to believe I still have damage.  I wouldn't believe it if I wasn't living it, either!

 

Hang tough!

 

ginger

[[Un...]]

Little update:

 

Almost to 3months now.  Feeling better.  Still eating very healthy, staying active, and staying away from caffeine, high sugar, as well as alcohol.  Headaches have finally stopped.  I was able to resume my hobby of mountain biking last weekend.  It was fantastic to go back out after so many months away.  Hard though.  But made it.  I was VERY VERY VERY dizzy after the first 3 miles though.  Much more then ever before.  I guess my central nervous system is still in recovery mode and has to get used to this more extreme exercise then just a spin around the neighborhood.  It was a bit scary to feel that dizzy, but I just kept telling myself it is all part of it and will pass.  It did after the next 3 miles and eased up. 

I kept the weight off that I had lost during this healing process.  I guess it was mostly fat from unhealthy diet and alcohol.  Went from 175lbs down to 161lbs.  It makes me very skinny being 6'2 but wife likes it.  So I guess I will just do what I do and it will stay off.

Still have anxiety at times.  Not as much, but it still comes.  Especially in the late afternoon.  The adrenaline still builds up and sticks for few hours every other day or so.  Hope that eases up as it isn't very comfortable.

Hanging in there!

[[do...]]

I was able to resume my hobby of mountain biking last weekend.  It was fantastic to go back out after so many months away.  Hard though.  But made it.  I was VERY VERY VERY dizzy after the first 3 miles though.  Much more then ever before. 

 

This IS impressive! Congratulations.

 

It is sad but I, unlike you, being one month off am unable to walk much. I'm used to do 10-20 km per day - I just love walking - but now I can do 1 km and often end up seizuring.

I can see I am making progress though but last few days I could not help myself and drank, out of depression.

 

However, I can see that I am making a progress. And I will walk/ swim/ roller skate again.