Post Benzo Freedom Withdrawal Support Group

[[Ho...]]

Towards,

 

hehehehehe.    I made a comment to Staffy the other day how I should have been English / Australian because I love your expressions, like "bloody hell!", and I am also a hat aficianado (which just gets you strange looks here in the states).

 

So, today I am "travelling" a bit better; Aunt Flo showed up yesterday so that explains why last week was so cruddy.  My dizziness has been pretty bad today, though.  Ugh.

 

So you get the dizziness, lightheadedness and hot flashes?  There are a lot of us who are in the same time frame (~6 months off) who seem to be experiencing an uptick in symptoms.  I had a benzo survivor stop at my house yesterday for a visit and he said that the 5-8 month time frame tends to be particularly difficult for some reason.  BUT, the good news is that almost everybody gets a first "big turn" right after that.  I have seen that in a lot of stories, too.  Some of the other folks who are in this same boat are GettingThere, waitingforrelief, and Wesly16.  They also check in on my blog if you want to stop there too to see what is going on with all of us.

 

Pange,  oh my god.  I am so sorry for your polydrug experience.  Yes, the meds I'm on right now, in the doses I am on (Florinef .075 mg / day and Effexor XR 112.5) I usually tolerate very well.  I am the same way with meds, a low dose does me very good.  The whole story is on my blog, but suffice it to say that I was on 75 mg of Effexor XR (brand) for years with no issues; this whole mess got started when my insurance company switched me to the generic version.  My docs didn't know what was going on so they started adding all sorts of steroids, anti-anxiety meds, etc. which ultimately culminated in the Ativan.    So, I may have a bit of tapering of my Effexor to do, but it is clear to me that all the s/x I have now are due to the Klonopin / Ativan w/d....when I am on Florinef and Effexor alone, the only s/x I get are headaches and some MINOR dizziness (I mean almost unnoticeable...nothing like I have now).  I appreciate you keeping track of me....it is so heartening to have those ahead of us in healing checking in and keeping us going....sometimes it is the only gas in my engine.    Oh, and the end of my taper was July 23, 2012.  I started tapering toward the end of May, so I was on Ativan (including taper) for only 13 weeks.

[[Ho...]]

Flip, you disconnected?  I can't imagine it??!!  It seems like I see your posts all over the place...but maybe that was awhile back.

 

I'm glad you are seeing progress.  I am really stuck, and mostly housebound because of being so dizzy and weak.  I've seen you give such support other places, so I hope that we can give you some back and also experience some of that Flip enthusiasm. 

 

This thread tends to get buried, so I will try and make sure I check in at least every day to keep it active.

[[Fl...]]

Hey back Hoosierfan,

 

I don't know what happened. It's almost like the second I was through with Valium, people sort of wrote me off. Not in a bad way. More like they thought I was magically all better. Not a fellow sufferer, etc. And many of my buddies were ahead of me and make only rare appearances.

 

Maybe we've talked about this before but I see from your meds that you have issues with volume and fluid balance. Is it Pots? Low aldosterone for sure, right? Did you gain a bunch of weight? I sure did and after much testing and pondering by a really smart nephrologist, it is suspected that my low aldosterone and renin is due to higher volume which was a kind of nice way of saying I got fat, 

 

So I'm on the weight loss bandwagon. Down 28 pounds so far since November. Still very far to go. I can't even think that far ahead.

 

It's good to see you here. I'm really sorry you're struggling so much. Are you seeing any improvement at all?

 

Thanks for your welcome.

Flip

[[Wi...]]

Hey Flip,

 

I'm just a lurker on this thread as I'm not "post" yet.  I'm glad you found this place, for yourself and partially selfishly for me in that I am still far behind you but I've followed many of your posting throughout and would like to continue to see your progress as our pace in tapering has similarities and I have found your posts very helpful throughout.  Hope ya don't mind if I "stalk" ya

 

WWWI

[[Fl...]]

Do you have any chocolate, WWWI? 

 

Thank you for your words, my friend. Soon you will be done. Well, not soon, I guess, but it's much closer than it was.

Flip

[[Ho...]]

Hey back Hoosierfan,

 

I don't know what happened. It's almost like the second I was through with Valium, people sort of wrote me off. Not in a bad way. More like they thought I was magically all better. Not a fellow sufferer, etc. And many of my buddies were ahead of me and make only rare appearances.

 

Maybe we've talked about this before but I see from your meds that you have issues with volume and fluid balance. Is it Pots? Low aldosterone for sure, right? Did you gain a bunch of weight? I sure did and after much testing and pondering by a really smart nephrologist, it is suspected that my low aldosterone and renin is due to higher volume which was a kind of nice way of saying I got fat, 

 

So I'm on the weight loss bandwagon. Down 28 pounds so far since November. Still very far to go. I can't even think that far ahead.

 

It's good to see you here. I'm really sorry you're struggling so much. Are you seeing any improvement at all?

 

Thanks for your welcome.

Flip

 

Flip, I'm happy to be a "replacement" buddy.      How are you feeling and functioning?  What's still bugging ya?

 

Ok, the Florinef thing is a little complicated...no, I don't have POTS.  When I had mono about 7 years ago I reacted to it by getting very lightheaded after meals on a daily basis, so my docs put my on Effexor XR and florinef to help my low bp reactions...but my aldosterone levels were never tested.  I tapered off after a couple of months and was a-ok.  then I tried to get off Effexor in 2008 and again, had issues with hypotension and (not knowing it was a w/d symptom) after several months the docs threw me back on the Effexor and florinef saying I "needed" it.  Again, got off florinef for a couple of months....then the generic thing hit, I again went through SSRI w/d syndrom (which one of my major symptoms was lightheadedness / low bp), so again, another round of Florinef starting in Jan. 2011.  I was on as high as .15 mg / day (now on 1/2 of that).  But last April after I c/t my klonopin I tried to also reduce the florinef and I got so low bp and so much anxiety that we stuck where we were on the florinef and they added the Ativan (big mistake). 

 

The problem is that I've been on the florinef now so long (2 years) that my body is dependant on it.  Kind of like benzos and SSRIs.  So my goal is to get off of it someday, but we at least have to wait till the Ativan w/d is over and then some.  Perseverance's info on the HPA Axis was really helpful.  It made me realize why I reacted so badly last spring when trying to c/t the Klonopin and reduce the Florinef at the same time -- from her research, the tapering / discontinuing of benzos and corticosteriods or mineralcorticoids (like florinef) should be AT LEAST 1 year apart.  My docs had no idea.... 

 

Crazy thing is that except for the mono, I never had problems these kinds of problems with low bp UNTIL SRNIs and benzos came into my life. 

[[Fl...]]

It's like you've been mugged, Hooiserfan.  . I think there needs to be a semester in medical school about what it's like to take away drugs. They cover the giving of drugs very well. They do seem relatively cluless about the discontinuation part. And when we have trouble, somehow we are on our own.

 

I know! Perseverance's research is just amazing, isn't it? I'll confess, even after she broke it down for us, I still couldn't grasp it. The main thing I learned from her is to wait it out and try really hard not to introduce anything new until it's over. I am sorry to see her go, but am happy for her.

 

I guess this truly is an issue of patience extraodinaire.

 

Just lately I'm starting to have moments of clear and good. It snowed last week and I was driving in it. It was so pretty and I had this sudden awareness that I was still alive and just maybe had a future. Until then, it's been sheer endurance and trying to keep a positive attitude, and, as you know, that is a full time job!

 

I'm really sorry you were so hijacked and are left picking up the pieces. It seems like you're handling it more gracefully than I would.

 

Wishing you a restful night.

Flip

[[wi...]]

Hoosier,

Yes, I did feel weak and lightheaded all day for many months.  Yes, the symptoms are worse around the cycle.  Benzos really compromise the HPA Axis in the brain (Hypothalamus, Pituitary, Adrenal) so our hormones get really messed up.  I haven't looked around BB for a long time so I don't know if she is still around, but Perseverance did a lot of research and had a wealth of information on her blog about the whole hormonal piece.  She was very helpful to me about a year ago.  When I finally found a doctor to help me, he tested my hormones and I pretty much didn't have any of anything.  I ended up on bio-identical thyroid, progesterone and estrogen.  Then at about 3 -4 months out from ending clonazepam, I started getting big "hits" like I'd just taken an overdose of steroids.  Then it got so bad it started causing symptoms of heart attack.  We had to wean me off of the hormones very quickly.  The good news now is that I am 10 months post hormones and 16 1/2 months post benzo and there is no sign that I am deficient of any hormones.  Our systems do know how to heal themselves!!

 

No, my typical day was not like yours because I couldn't sleep during the day or night.  However, I have read many posts from people who told that same story.  My body was so exhausted that I used to doze off literally anywhere - even on the toilet, if you can imagine!  I experienced what are called "toxic naps."  It was far worse (horrible panic upon awakening) to try to nap than to just stay awake.  I was useless and house bound.  It was horrible.  But...  remember that as much as you want to compare (I know I still go there, too.), try not to.  Each person is literally on a different time table and path of symptoms.  Some people just wake up one day and they are fine.  Some have "windows" where they feel fine and then get hit with a wave again.  I have slight windows and waves, but I NEVER am without some symptoms.  The part of your story that was like mine, is that I would have to be satisfied if I just got the dish washer unloaded on a given day.  Yes, the fatigue was over the top.  I still have days like that from time to time, but they are not all like that.  I am no longer house bound, and I even participate in activities outside the home, go to friends houses for dinner, etc.  I've learned that as I get more energy, I just do things and act like I'm fine even though I don't feel fine or symptom free by any means.  The isolation was getting to me.  It has only been in the last two months that I could run more that one errand on a day, though.  I'm still not where I would like to be, but I'm making progress.  I have to really plan my days to conserve energy.  I used to be very fit and love exercise so it is hard to be so fatigued.  I've gained about 20 pounds, too.  Yuck!

 

In terms of improvement, it has just been very gradual.  I'll look back and realize that I am able to do something that I wasn't able to do a few months ago, but don't know when I started to do it.  I look back to a year ago and I see that I have come very far.  There is just more to go.  Keep holding on and moving forward.  Every day is a step in the right direction.  There have been so many days when I just didn't think I could go on anymore, and couldn't believe that a body could stand up to this much assault.  I'm not done, but moving forward.

 

I certainly understand the battle with acceptance.  So much of the time I have spent in the state of "shock and disbelief" - not wanting to believe that this is really happening!

 

One thing that has really been hard are the periods of intense physical anxiousness, which feed fear and anxiety.  I still have them, but they don't seem as bad.  Also, I think we get better over time at pushing the symptoms aside and moving forward through them. I often say, "This too shall pass."

 

Hope this helps.  I don't come on BB very often anymore, so if you don't hear from me don't take it personally.

 

Onward and upward,

Wish

 

 

[[ih...]]

Hi all, it's great that this thread has been reactivated. Flip, I have felt the same as you, there is much more activity around tapering & those who have the same sx. I had hoped the post taper dedicated thread may have got some traction but it looks as though admin have rejected the idea. It does get disheartening when you don't get responses to posts. All of the responses to posts about my own sx have been from a very small group of people, (you included), so I am kind of used to it.

 

Hoosier, the first withdrawal, I was very disabled for many months, (can't be precise because I had no knowledge of benzo withdrawal & didn't keep a record as had been dxd with post viral fatigue). I then had  a window with just the occasional wave when I would crash for a day or two. In both withdrawals, I have had the pattern of hours when I would be ok then the benzo flu type sx would kick in again for the rest of the day.

 

As the clonidine has controlled the POTs this time round, I think that the reduced number of adrenaline spikes has also significantly reduced the bouts of chronic fatigue. I am close to being able to get through a normal day & would like to think that the crippling fatigue is now only very occasional.

 

I am under a huge amount of pressure from my husband to get back to work so don't have time to go into more detail about the recovery process at the moment but please believe that it has got very much better for me, although I well remember the days when achieving one load of washing or producing a meal was all I could manage in one day.

 

Will post more when I knock some more items off my very long to do list.

[[ve...]]

Glad to see the Post benzo thread has gained some traction again.  Many thanks to Pangelingua for making the efforts to come back to support others.  Unfortunately, I don't have the time I used to but will try to pop in once in a while.

 

Best,

 

Vertigo

[[ih...]]

It's true, as Wish says that our circumstances & individual biology are all different so it's speculative to rely on others experiences, however the extreme fatigue is so disturbing it's natural to look for reassurance that it will end & I can reassure you that it has ended for me on both occasions. Even though it took much longer to resolve after the first withdrawal, it still did clear up completely & had I not taken the Cipro which kindled the sx & lead to the valium, I would not be here now.

 

Even so & in spite of kidney infection, long term antibiotics & antibiotic poisoning, I am now having lots of normal days at 6 months off. By that I mean for example, yesterday, meeting friends first thing for early coffee, moving a farm load of stuff in the pouring rain , unpacking it all at the other end, exercising with kettle bells for 45 minutes, making dinner & clearing up, watching a late news show & bed at 11.30. Today I have made 2 meals, done a few loads of washing & edited 14, (short), chapters of a book. Am about to do some exercise then back to the editing which has to be finished tonight.

 

I also do back office stuff for my husband's security consulting business & am getting ready to return to full time study & part time work. Most of this was unthinkable not that long ago & it's still somewhat hard to trust as the new reality but it's growing on me.

 

[[ih...]]

Glad to see the Post benzo thread has gained some traction again.  Many thanks to Pangelingua for making the efforts to come back to support others.  Unfortunately, I don't have the time I used to but will try to pop in once in a while.

 

Best,

 

Vertigo

 

Hi Vertigo, it just goes to show what a great job you did holding up this thread & I hope to follow the examples of Pangelingua & you by continuing to visit, even tho I am getting busier now that my post benzo life commitments are increasing.

[[gr...]]

Hello all,

 

I'm three weeks off benzos today. I'm really friggin' irritable and feeling withdrawals in every cell of my body. I had a pleasant three day bump last week and I made the mistake of thinking the worst was behind me, especially since I had been tapering for a year. Then it just whipped back up and I was down again. We were hosting a birthday party for my mother-in-law on Saturday and I was too overwhelmed to socialize. I spent the three hours down in our room.

 

I think perhaps I had too lofty expectations once I stopped and have been dealing with the hard reality that this is going to keep going. I feel very alienated from the outside world and feel the withdrawals so much more deeply (it seems) than when I was tapering. When I get hit with a wave like this, I lose perspective and feel like I've been this way forever and will be this way always. Then I get claustrophobic, looking for some relief. It comes and it goes.

 

I'm racked with guilt about my kids, my wife, my friends, and even at work. It may seem like I'm doing OK if I can work, but it's actually the only way I can cope with this. If I stay at home by myself, I obsess and also feel overwhelmingly guilty as everyone else in the family are doing their responsibilities and I'm just sitting at home. I know that's not healthy thinking, but it's so innate, I can't seem to shake it.

 

I certainly hope this will peak soon and start to let up. I'm trying to figure out if I'll go through an "acute" phase and then a slowly improving post-acute phase. I'm not sure I believe in the acute phase concept though. Of course, I will say that this first three weeks of being post-benzo is the only time I've entertained the notion of re-instating.  I really want to feel that I can make it...not intellectually, but feel it in my gut. Not there yet.

 

Sorry if this is self-indulgent, I am bad at offering support at the moment, but I am reading this thread and hope all of you enjoy improvements soon.

[Guest [to...]]

Welcome gremar,

 

Congratulations on being benzo free  we are here to support each other. 

 

I understand what are going through hang in there..... As they keep saying 'we will recover'

 

peace strength and healing

 

[[kl...]]

hi group,

 

I'm just a few days short of TEN months off, and while most of my symptoms are gone, the few nagging leftovers have really got me down.  I start a new job in a month and need all the energy I can get, but it seems that no matter how much i sleep, I look and feel exhausted.  People are always asking me if I get any sleep at all (I get 6-8 hours).  I have posted all over bb to find people with this fake sleep problem.  I thought about maybe going back to a sleep clinic and insisting they keep me over night, but even if they do find that I'm not getting deep sleep, can they even do anything? 

[[Ho...]]

Gremar, welcome and you can make it.  Your body will not let you down.  We all will make it.

 

Klonopinned, I can only say that I am in the same boat; I sleep relatively well at night but am exhausted and dizzy all the time.  See Ihope's post above, she had the unrelenting fatigue too and it did fade over time.  As for the sleep study, I'm not sure...maybe someone else can chime in.

 

Ihope and wish, thank you for all the encouragement.  I was just that more functional in Months 2-4 and then months 5-7 my symptoms got so much worse, so it is so scary.  Especially the crushing fatigue and weakness.  It almost feels like I am dying....but I know that I am not.  I know Wesly16 and waitingforrelief are having the same issues and about the same time off.  I really hope that this is just my body doing its "heavy metobolic lifting" of healing, and that my corner turn comes sometime in the next few months.  I have to believe all the BBs out there when it seems like everyone, at the latest gets their first turn sometime between 7 and 12 months.

 

Sending hugs to everyone today!

[[gr...]]

I have posted all over bb to find people with this fake sleep problem.  I thought about maybe going back to a sleep clinic and insisting they keep me over night, but even if they do find that I'm not getting deep sleep, can they even do anything? 

 

klonnopined - before I realized I had tolerance withdrawal, I did a sleep study. I was surprised to find I had sleep apnea and got a c-pap machine. Unfortunately, it didn't help much because it was from the xanax that I was taking. But it might be worth a look.

[Guest [to...]]

Hi Gremar,

 

Same thing happened to me.  However, found out it was the benzos before the expensive out lay of a machine. I am now lucky to sleep at all.

 

Gremar we will get through this.......every day in every way we are getting better and better.

[[pa...]]

Hi again

 

Boy, lot's of replys since my last post here!!

Thanks Vertigo and Ihope for your votes of confidence

I'll try to keep this thread up when I can. I'm a pretty regular poster here to the forum, just not a frequent one. One thing that will help is that I have just ordered a new service online package that will allow me to have more internet use. My time online has been limited to due sharing it with kids! Also,  I have the crazy work up and down work schedule to contend with.

 

That said, I'm glad to see newer members here making it happen! As I look down the list of member replies: Towards, Gremar, Hoosier, Klonopinned, Hoosie, Wish, Flipbrained (did I leave anyone out?) thanks for your presence here and your continuing discussions. Also, thanks to V for his starting this thread and lots of time/effort to reach out to others here.

 

Klonopinned, I was reading your reply about sleep issues. I did have a period of time about 11 months out when I had a bout of insomnia that lasted about 2 months. I won't go into much detail about it, but I think a huge part of the issue was the fact that I had/have taken on a a work assignment that is rather unsettled. I seem better able to cope with it now, but at 11 months off, I think it caused me too much distress.

There was a combination of stress from w/d plus end of taper and numerous life issues. These included: resignation from a full time position (due to numerous issues there), plus a horrible estate mess (due to death of father and subesquent personal issues that developed late), plus the uncertainty of finances (family, kids health insurance), plus trying to taper a second med (remeron), plus additional issues that were going on then with other people I knew.

All these things came together at the same time and thus the sleep problems.

 

It was when I went back to 'homeopathic' doses of the remeron that the sleep issue improved. It also helped give me some stamina that I hadn't had those last few months. Ironically, I injured my back just after getting the sleep back on track!

 

It seemed to take some time after this (a few more months) and I pulled through the rough spot, and since then my quality of life improved and has stayed the same. I consider my life at about 90-95% healed. In some cases (such as work satisfaction), I might put this figure at 120%!! Only issue there are the hours... Anyway, Klonopinned, my illustration here is that life issues and withdrawal seem to go and in hand and sometimes it just takes weathering until you reach an easier point.

Gremar, I can relate to your feelings about guilt over family. I sometimes feel pretty bad about what distress I may have caused my wife and kids when I was hitting my lowest points.

I do keep in mind that kids and family are resilient (and forgiving) and I have more than made up for whatever low times came before. Perhaps focusing on your positive aspects of what you bring to your family will help you to feel better about this.

Hoosier: It sounds like you've found a good balance with your med situation and I'm glad to hear this. I have learned to be pragmatic when it comes to the use of A/Ds. If low doses can help a person get through benzo w/d and improve quality of living, then I say they are worth looking into. Right now, I'd say that irregular sleep/work times are my biggest issue and so the remeron helps me through and better able to cope...

 

That's all for now. Hope everyone on this thread is doing well! I have a late night tonight and then again Friday. Next week... Who knows? I'll try to stop by this thread in the mornings PDT and catch up. Have a great rest of the week!

 

 

 

 

 

[[gr...]]

This song gets me.

 

 

[[kl...]]

I love this thread 

 

I took a four mile walk today to the river.  It is very cold but there was no wind and the sun is out.  Makes me remember the early months of wd where literally going around the block was a huge task- Dizziness, huge DR, sleeping 2 hours a night.  I'm not where I want to be yet but I have come really far.  I hope everyone is well.

[[ve...]]

Hope all post benzo buddies are faring well.

 

Vertigo

[Guest [to...]]

Hope all post benzo buddies are faring well.

 

Vertigo

 

ok so far Vertigo

 

How are you?

[[ge...]]

Hey everyone! I did not realize this thread was for people who still have symptoms! I thought it was for people who were recovered and moving on with their lives! It looks like a great thread, and I'd love to participate. I am almost seven months off, and very symptomatic. the lack of research on benzo withdrawal and recovery really bothers me because I used to be very rational and facts would calm me down. Not feeling well, but wanted to say hello 

[Guest [to...]]

Hey everyone! I did not realize this thread was for people who still have symptoms! I thought it was for people who were recovered and moving on with their lives! It looks like a great thread, and I'd love to participate. I am almost seven months off, and very symptomatic. the lack of research on benzo withdrawal and recovery really bothers me because I used to be very rational and facts would calm me down. Not feeling well, but wanted to say hello 

 

Hi gettingthere

 

sending you a