Post Benzo Protracted Withdrawal Support Group

[[Ho...]]

Hello all - I'm not on BB too much anymore and have lost touch with many of you.  I am almost 19 months out now (officially protracted) and thought I was turning a corner, but turned out to be a U-turn....we are moving so the packing, house hunting and house selling are definitely factors in this continued suffering.

    But Vertigo - I just wantedto respond to your "food for thought" comment about how many of us are suffering from pre-benzo stuff that has returned as opposed to being protracted.  I have thought continuously about that.  But I just wanted to ask you for your opinion and please, others do chime in.  During my wave days, (and yes I do get windows which I am so greatful for) my anxiety is over the top and I constantly think that this is just me.  But when I get a window, the anxiety becomes very tolerable and almost non-existent and I am calm and normal.  Now that is what I choose to think of as the REAL me.  So even though I was put on the Klonopin for a situational anxiety time in my life (heart operation), I do not think that this is that original anxiety returning.  I do think perhaps that because I was extremely anxious from the fear of the whole medical issue and that fear was medicated and obliterated by the Klonopin, that this anxiety that I now have on my wave days (which are most days) may be that original anxiety and my brain needs to relearn to not be fearful...I am no longer fearful of the heart issue (I have a defibrillator and have had it for 20 years and am no longer frightened by it) but I think because my brain was medicated right at that time and abolished the fear, that now without the medicine (even these 19 months later), the brain just naturally goes back to that last pre-medicated time.  I hope that makes sense. 

    So Verti, in one sense it is due to a situation that happened right before I took the drug but it is in no sense who I naturally was for the previous part of my life.  I choose to believe that the person in the window - the calm, natural, easy person - is the person who I really am and once my brain heals, I will be that person again.  I surely hope so because living like this sucks big time....

      Good to hear from you again Verti.....

Thanks all for listening

Hoping2BFree

 

[Guest [ru...]]

Yea, it would be great to find a shelter rescue dog but if you know exactly what you're looking for, you can go with the breeder (we did last time).  You can also look up Petfinders.com and punch in what you're looking for and miles/distance and if you're willing to drive some distance, you might get lucky with the breed you want.  We ended up with a rescue dog which admittedly did need some medical attention but he's so sweet and as if he knows we saved his life.  By the way, he loves his crate.  He goes in there voluntarily in the day even when we're home, likes the cold of it in contrast to the carpet sometimes.  When we turn the tv off at night, he goes straight in there, has a great routine.  We used to have our last dog sleep with us but he made so much noise and with all the insomnia I had over the last few years, just couldn't do it this time.  Sometimes you just want a break and it's so nice to be able to do that.  If you crate train a dog properly, it can be great for owner and dog, just my opinion.  As long as you realize it's not going to be all fun and games.  I really don't know how I would have survived without a crate.  Puppies can be so rambunctious.  Be sure you're ready for this now Ruthie!  It's hard to turn back once you bring them home.  Dogs need exercise and to do their business, regardless of whether we are feeling agoraphobic or "panicky" or just "lazy" .

 

Vertigo

 

I live in NZ NOT USA so thanks for the website Vertigo, but I've already done my homework on the subject & it IS a spaniel I'm after. Not all fun & games, really???  I wouldnt have guessed considering I've already trained/raised a dog before. I will be the best Mum in the world DESPITE how I feel too thank you!

[[ve...]]

Hi Ruthie.  Sorry about the website, didn't realize you were in NZ.  Sounds like you took my comment about "fun and games" to be sarcastic or offensive, but that was not my intention.  Like you, I also had raised a dog from a puppy a little over ten years ago and grew up with dogs.  In my case, I tended to remember the positives and block out some of the negatives of having a dog. Yes, I believe there are pros and cons to it.  Being still in recovery mode, I found it to be a lot more stressful than I remembered and expected.  I have no doubt that you'll be the best mom to whatever dog you get. All I was saying is that it might be best to be far along in the healing process as it can really be a huge responsibility and energy drain, along with many positives that you are undoubtedly aware of.  I hear that Spaniels are a lovely breed .

 

Vertigo

[Guest [pu...]]

I don't want to offend anyone but I wonder how much is really protracted versus pre benzo issues that are coming back to some degree?  I mean, most of us took a benzo for a reason, right?  Just food for thought.

 

I wanted to chime in on this because my husband had no previous history of anxiety or depression...at all before this.  He was the exact opposite...naturally cheerful, energetic, optimistic, happy-go-lucky...the sweet class clown type.  He had a reaction to Albuterol which caused some pretty bad anxiety (nothing compared to B/W) and was prescribed the Ativan over the phone with no warnings....had interdose w/d right away...turned our lives upside down...the whole bit....one of the worst w/d's I've read about...only on 5 months and 4 months of that was a failed crossover to Valium....which lead to a cold turkey at a clinic.

 

Now, at almost 27 months off, he is much better but still has some morning anxiety and we just got through a pretty bad wave that lasted 3 days.  So...there is no pre-existing anxiety to return....it's all temporary damage from the drug....or drugs....not sure if the Albuterol caused anything permanent...can't find much info about it because they usually treat the albuterol anxiety with benzos as far as I can tell.

 

Anyway....just wanted to put our story out there for comparison purposes.  No offense taken at all. 

 

Hoping2befree....I think you are right and the normal, calm days are the REAL you!      I think of you often and can't wait for you to be ALL real.    Things are so much better for us now even with the recent wave.....even the wave was better, if you know what I mean....didn't last as long, less intense (that's in hindsight, of course)...but each time it gets better builds our hope.  I pray that hope is building for you also. 

 

puffin 

[[Ho...]]

Thank you Puffin for that reassurance....so glad Mr. Puffin is continuing to heal.  So sorry about this latest wave - that must have been scary for you and him.  But I think it is fairly normal in this horrific journey we call recovery.  Thank you for staying in touch here on BB and letting us know how Mr. Puff and you are doing. Your posts have always been encouraging to me.

Thank you

Hoping2BFree

[[pa...]]

I hope this doesn't sound callous AT ALL.  I am so not trying to sound that way, so I hope it doesn't.

 

I thought I woudl come here because I know you all are beyond me in healing, and I think that maybe many of the buddies on the board for support are still tapering, so I thought I would ask you.

 

I am almost 6 months off - and I think that 3-5 months was the hardest time for me. I am definitely better than I was, but in some ways, because this has gone on so long, I feel maybe less confident than I ever did. I mean, I wouldn't want to return to 3 months off ever again. I'd maybe rather die. But here at 6 months almost, I am chomping at the bit. (I'm sure you remember, although you might be laughing at me because I'm still early off yet.)

 

My biggest challenge is that I had good days and bad days - UNTIL -March 1. THAT day, I woke up withOUT d/r. OH MY LORD. It was so amazing. I was up and at'em. I went shopping, to the playground with my kiddos. It was amazing. 

Problem is, d/r came back that afternoon. I haven't had another window like that since. 

 

I am at a loss.  Do you guys still have d/r?  Mine is mild to moderate depending on the day - but most of the time, it's mild. I think it improved at 5 months to mostly mild, but it's still not "gone".

 

I probably sound like a broken record, and I have posted on this ad nauseum latetly, so please forgive me. I'm just a girl looking for some encouragement. 

I "can deal" with anxiety.  I just can't handle the d/r.  Are you guys still carryign the d/r around?  Did it leave?  I know I must sound like a fool to think I can handle whatever is in its wake, but as I feel that d/r is my most distressing symptom, if only it would go, I feel like I'd be strong enough to handle what's left with grace. 

 

Thank you guys so much.  I love you all. And I hope I dont' sound callous, as I know that whatever you're still dealing with is as painful to you as my symptoms are to me.

 

Please tell me it's at least better than where I'm at....

 

:)Parker

[[pa...]]

I just wanted to add that I didn't have anxiety issues prior to this. I was put on K and Ambien after I gave birth, as I just couldn't sleep or eat. In hindsight and after research, I am sure it was related to the rapid drop in progesterone and subsequent breastfeeding, both of which keep progesterone low.  Progesterone is so high in pregnancy (and acts on GABA receptors) that the rapid drop was like a c/t withdrawal experience for me. This happens for some women apparently. I had this same experience with my daughter earlier, but she couldn't breastfeed, so I believe my progesterone returned to normal levels prior to needing any medication to change it.

Nevertheless, I don't abuse any substances. I am a mom and was a teacher.  This experience is entirely benzo-related for me, but I have never had d/r - and it feels like I'm stuck in a daydream and can't pop "back" to reality. It's way milder and I feel sometimes like I might break through - but I haven't.  Very hard. 

Thanks guys,

Parker

xoxo

[[km...]]

Parker,

I had dr really bad for months but now it comes and goes.  I have it now but it's because I'm on day 1 of my cycle.  It seems to be getting less intense as time goes on and hopefully in the next 6 months will dissappear alltogether.  Just hang in there time is the answer.

Hugs

Kmarie

[[pa...]]

Thanks, Kristin - Usually my period brings on worse symptoms but the ONE time I had a window where I had no d/r was on day 2 of my period!  So I have no idea!  I kinda expected to wake up the next morning and have the d/r be gone again, but it was back. And I have no idea why it left, but I DO know it was gone that morning.  I walked around my house and everything looked real. The world was real.  It was GONE.  Does yours come and go? 

[[Ja...]]

Hi guys (again), I think some of you have hit the nail on the head. It's not that most of us are as sick as we were when we just got off the benzos, but we are still vulnerable to stress and probably to anything we consume. I know that I can now drink small amounts of alcohol (a beer or two) and not suffer any consequences afterwards, but having said that I did go through 3-4 months of a lot work related stress that nearly brought me back to taking ADs again.

 

So in general, if you can, keep in mind that once you figure out what situations, foods, or drinks revs you up, try your best to stay away from them. Seems like common sense advice, but the more I see posts about people going back to suffering the more and more I see these things being part of the problem.

 

Ed

[[st...]]

Food and daily fluid intake has been the same since this process began and I keep my stress levels low.  I can't think of anything that triggers my waves except a temperature and maybe antibiotics.  I would love to have just one day where I feel halfway normal.  DR continues but is less intense than during my withdrawal.  No prior history of anxiety.  FYI Levaquin toxicity is probably playing a role in my situation but the fluoroquinolones and benzos seem to act similarly on the cns.

 

Patty

[Guest [ru...]]

Hi Ruthie.  Sorry about the website, didn't realize you were in NZ.  Sounds like you took my comment about "fun and games" to be sarcastic or offensive, but that was not my intention.  Like you, I also had raised a dog from a puppy a little over ten years ago and grew up with dogs.  In my case, I tended to remember the positives and block out some of the negatives of having a dog. Yes, I believe there are pros and cons to it.  Being still in recovery mode, I found it to be a lot more stressful than I remembered and expected.  I have no doubt that you'll be the best mom to whatever dog you get. All I was saying is that it might be best to be far along in the healing process as it can really be a huge responsibility and energy drain, along with many positives that you are undoubtedly aware of.  I hear that Spaniels are a lovely breed .

 

Vertigo

 

Hi Vertigo,

 

OK thanks for clarifying.  Sorry for the misunderstanding.  Now I hear where you are coming from.  Sorry I DO find text chat to be quite difficult & prone to alot of misunderstandings - because you cant hear or see the person to know where they are coming from. So, sorry for the misunderstanding....

 

Yeah you are right we do sometimes tend to forget all the bad & all the intricate details (however I dont forget the mopping up messes part thats for sure AND all the messiness ).  I'm a real clean queen too so that part I'm NOT looking forward to, nor the extra financial strain.  My l/t memory is still pretty inaccessible too which is scary as hell but I do remember how to train a dog still at least, thank God.

 

Yip I know it will all be a huge stress & energy drain for sure & have its pro's & con's, however I just need the love, claughs & companionship now.  Living by myself without company, higher purpose, love or anyone to relate to is just a nightmare all on its own & tremendously lonely.

 

I've had my only son leave home throughout all this mess too so having someone to care for/mother again will be nice (I raised him by myself too).  Having a buddy to do things with TOGETHER can be very healing I'm hoping.  So thats where I'm coming from.

 

Like all relationships it will DEFINITELY have its downsides.  However I do tend to find it easier to get motivated for others needs rather than my own, so having to attend to a Puppy's needs may get my butt out for more regular walks too lol...and more personally meaningful PURPOSE.

 

Yeah I totally LOVE spaniels they are so playful, full of life, tremendously loyal & loving, very willing to please & just plain out goofy & fun & I soooo need some of THAT back thats for sure ..an amazingly gorgeous nature...

 

"A Joy shared is a Joy DOUBLED" & "A problem shared is a problem HALVED". Wow that came back to my memory just now!!!  I firmly believe life is meant to be shared TOGETHER & being totally by myself no wonder things suck more!!! No company, purpose or sense of belonging...It would be better having a real-life person/partner, however a new "baby" will have to do for now.

 

Anyway all the best to you.

[[ve...]]

No worries Ruthie. You're right. It's hard to hear tone and and intention in the written word. I do see your point about having the companionship now. And there's so much unconditional love and healing in a dog. Our situation was a bit rough at first because we did get a rescue dog who ended up having kennel cough and worms which really made for some high vet bills for a few months and mess to clean, not to mention the chewing... In retrospect, at 14 months, it might have been a tad early for me to take it on but I also wanted to do something for my family after having put up with a lot of crap the last year or two on and off the benzo. Anyway, if you feel you're ready for a dog, go for it . The pluses will outweigh the minuses, as you say.  Must be rough having your son leave home in the midst of all you're going through.  The company might do you some good and also get you out walking more as you mentioned.

 

Speaking of which, better take mine out for a walk!

 

Vertigo

[[ga...]]

I'm 3 years off this past week. in many ways I am feeling like I am doing worse. but my husband encouraged me to read my old journals and behold....I'm doing better. what is worse is the physical pain and my biggest hinderance is my loss of confidence. that would have to be my biggest issue, loss of confidence. I worked through out my taper and only needed 4 months off when I hit acute WD. then back to work. last September, I stopped working. and my confidnece is just getting lower. I can't drive anymore, I can't pay my bills. for me, the puppy was a big stressor. we fostered a 5 week old puppy that needed round the clock bottle feeding. the same day, as we picked up the puppy from the pound, my husband fell in love with a 6 month old pittie. we then drove home with two puppies. the possitive was that they made me want to get up in the morning. they were happy to see me and MADE me go outside with them so they can do their business. I was forgetting about my gardens and the sound of birds. the negative was great. my fragility could not handle letting go of the puppy once he was ready for a home. I was in love with him. I spirled into a deep depression after he left.  the older puppy got into a fight with my 4 year old dog and there was a blood bath in my house. a bill of over $1,000 to save her life. (I have pet insurance now) and the need for the past three months to keep them separated as we go through intense training of this whole family. the stress of everything without a puppy was a lot. but I don't regret. in many way she is helping me stay out of my cave, and to engage in life. I had a CT that found a calcification in the basal ganglia. (brain) very rare that this would be a nuerological disese. degenerative. ouch. I know it is rare but this doubled my anxiety that I am 3 years off now and still struggling with DP/DR. and until I heal, I will not be sure which way I am going. that has freaked me out. freaking out in our condition never helps. 

[[ga...]]

Today I am feeling scared and wish I had some protracted people to talk to. anyone? I was feeling fine for several days then suddenly this morning like a sugar drop I was back in deep WD again. fuzzy vision, loud tinnitus, fuzzy thinking. anxious. amI bi-polar? I keep moving back and forth. 3 years of this. constant hot flashes about every 20 minutes for 3 years. now I get the hot flashes and I can't breath well and my mood is terrible then I recover. then it happens again. like torture. there is something wrong with me.

[[st...]]

HI garuda,

I continue to cycle/have waves and windows after being off Xanax for 43 months.  Our cns and pns are still healing but I am optimistic that full healing will occur.  It is a waiting game.  We have another member who doesn't blog too often anymore whose main complaint after the 3 year mark was DR but she continued to work as a nurse in the ER.....I do hope she is doing well at this point.  I will keep my fingers crossed that our healing happens in the next year.

 

Patty  xo

[[ga...]]

Hi Patty, do you cycle like me? up and down like every couple of weeks? is that the waves adn windows?

[[st...]]

Yes, garuda, I cycle like you and these ARE called waves and windows.  I, too, have the breathing issues, blurry vision and anxiety amongst other symptoms.  How is your energy level?  I have to push myself really hard to get anything accomplished.  I had the hot flashes/sweats for only a short time but I do deal with chills during a wave.  Agitation is still a big complaint, too.  There are a few of us over the 3 year mark still dealing with this process and we can be found under 'Buddie Space'.

 

Patty  xo

[[ch...]]

hi        can i pop in here and ask you a question.i am 25 months off benzos and in 6 weeks time i will be off my antidepressants.cant wait.still very light headed and dizzy.but the worst thing is the adrenalin.it just dosnt stop.can anyone tell me when it stopped .i just get up off the sofa and off it goes again.or up the stairs.i take my dogs aroun the block for a walk and come back my heart is pounding and going 60 miles an hour.when will this end.it has been here fight from the begining.i have hot flushes every hour 24/7.very bad tempered at the moment snapping at everyone.menerpausal.my list is to long.sleeping better infact i cannot get out of bed.so tired i could stay there all day.anybody got any answers,love to hear from you.xx

[[km...]]

chrissy

I am almost 4 months off my a/d and 19 months off benzo and things are horrible.  Not to discourage but I have a feeling it will be another year before I start to feel better after tapering the a/d.  Hang in there hopefully in the next couple weeks things will not be as intense for you.

Hugs

Kristin

[[ga...]]

I always thought that waves and windows were usually months apart. not weeks and at a seemingly regular intervals. I hope this is normal and that no bi-polar l

kicked in because of prolonged stress.  How do I join in on benzo buddies? isn't it closed? I'm having mood drops and anxiety waking me up lately. when I get a hotflash during the day, it takes my breath away and makes be weak and I can't breath and my mood drops really bad for a few minutes. so I don't drive anymore and I stopped working at the spa.  I don't want to get out of bed and going outside usually takes my breath away. I can't breath outside. too much stimulation. I have to take a 5 hour drive tomorrow being picked up by a stranger and taken to the snowy mountains for a 3 day retreat in a place I have never been before with no one I know.and bears.  then in a few weeks I have a ticket to fly to Chicago to visit friends. why? because when I have a wondow, I feel fine so I make plans. then the wave hits.I live in California. I'm acting normal but I'm freaking out. no one can see. I am a massage therapist and I look so calm. no one knows about the constant panic attacks the past couple of months since a naturopath gave me the wrong dose of thyroid replacement. that is being corrected now by my new allopathic doc.

[[ch...]]

kmarie 1994 nice to hear from you.has your adrenalin stopped or do you still have it.i hope you dont mind me asking,only i am at my wits end with mine

[[ro...]]

Hey Buds,

 

Need alittle support this week,my third birthday and still not well from the effects of Ativan,I feel quite alone these past months.

Almost 2 years disabled from this process, just worn out from waiting to feel well enough to do more activities that are about being in our life.

Many will be surprised I had no previous mental disorders,medical misdiagnosis got me started on a benzo for a few months but here I am stuck .

Being stuck - well have some dr,fatigue, agitation,excercise intolerence,awful morning anxiety,some tremors,assorted aches and pains,just still spaced most of the day better often in the evening.Yes I am better,had some breaks but overall not well really.

 

I am angry today,I used to look foward to my Birthday,just feeling very sorry for myself,I try to be objective as often as I can here for others and was on BW forum,I have gained quite alot of wisdom from this but sometimes I even need some reassurance this will end someday .

 

I am a unique case I quess,everyone I kept in touch with past 2 years has recovered and moved on -just feels harsh today !!

Sorry just a bad day to feel utterly alone- A TOP TEN BAD DAY.

 

Normal Life ,

Rondo

 

 

[[no...]]

PAWS for me too My MD started me on Wellbutrin 10 days ago for my "Clinical Depression." I have every PAWS symptom you can have minus the hallucinations.

[[st...]]

Hi Rondo,

 

Is today your birthday??  If so, happy birthday to you. 

 

Alot of members start feeling better in the 2 to 3 year time frame.  You are not so unique as there are quite a few members in their 2-4 year mark off date, unfortunately.  This IS a very lonely process but you do have us to lean on. 

 

Wish I knew how to post pictures so I can send you a cake.

 

Hugs,

 

Patty  xo