Post Benzo Protracted Withdrawal Support Group

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HI Puffin,

 

You have been such a great support to your husband through these years.  Our families suffer so much while we are sick.  The rage/anger was one of my top 5 symptoms.  My husband took such verbal abuse even though I tried really hard to be nice.  Sometimes just hearing his voice was irritating.  I have spent many nights staring at my husband while he is sleeping and feeling such love for him for putting up with me and my symptoms.  I have apologized hundreds of times and tell him just to hang in there until I am well.  He lives a single man's life because I am unable to do many things that a normal couple would do.  I know this will eventually change but, gosh, it is such a long process for some of us.  IMO, it takes a long while for our minds and bodies to adjust to any type of stress levels.  I know that I dislike myself when I fly off the handle as that is not my normal behavior and yes, it happens in a split second.

 

I have now been diagnosed with Lyme's disease, Babesie and a yeast infection so it looks like it will be awhile before I get my old self back.  Our immune systems have been damaged and these stupid opportunistic infections have a field day with us.

 

I know you are tired and it is trying on your marriage but please continue to be a support system for your hubby.  He doesn't want to be this way, ya know?  I count my blessings ever day for my husband.

 

Love,

 

Patty  xo

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I know I should not be reading this thread but I read puffin's message and I'm devastated. I am still 10.5 months off various psych drugs including benzos but deep inside of me I know that I'm going to be part of this unfortunate group soon due to my very severe symptoms.

 

I was always a very serious, mature, thoughtful, loving compassionate, empathetic person. Never quick to anger, completely mentally stable. Human with defects yes, but very well grounded. I have always been the source of love and security for my family. I have two young kids (18 months & 4 years old) who need me...and I wanted to give them all of me to them. I wanted to give them a sense of stability, security and love that I did not have as a child...and I was proud that I was succeeding.

 

Then came my polydrugging and I am totally changed. I wake up every morning with rage, psychotic-like symptoms, agitation, anxiety, evil thoughts, etc. The whole list of horrible mental symptoms that I'm sure you all know very well about. I spend about half of my day in my room while my husband and mom try to care for my children. I come out of my room for brief periods of time mostly to be with my children...As I leave my room I do a quick prayer and beg God to let me see my children and connect to them, to let me have control of my emotions when I'm with them...Sometimes I see them and my first reaction is one of love and joy but it's usually short-lasting. Other times I see them and I feel a total disconnect to them; other times I look at them and feel fear and anger (for no reason whatsoever).

 

I live my whole day wishing to have one of those days when I have a brief glimpse of love for them. Yesterday, I held my baby in my arms and looked at her eyes and felt a brief connection. As I was stroking her hair and skin, she said "Mamma" to me in a sweet voice and I could see the satisfaction in her face to have her mamma holding her...and I begged to God to make this last and to bring me back so she can have those emotional connections that she hasn't had with anyone since she was born...and that only a mom can provide.  Two minutes later I look at her again and her face looks odd and I feel FEAR...and a pain in my chest like an agony that cannot be described...

 

And I go to my room again and cry my eyes out and think that I want to die...and I feel SO GUILTY. Guilty for taking the pills, guilty for not being able to love them all the time, guilty for not being able to think my way out of this, guilty for not being there for them all the time, for not being a cool mom, for not taking them to the park, for feeling anger or fear about them...and then guilty for wanting to die and for thinking they would be better without me...

 

And I plead to my husband to please try to connect emotionally with them...to try to be like their mamma...but he can't even if he tries because he's not a mom...and let me all tell you, he's an amazing dad and husband, but he's not a mom...

 

Speaking of my dear husband...I'm sure he has PTSD too from this. I've seen him lost in space, unresponsive when I talk to him. He's seen me cry, scream and beg him that I want to die and it's getting to him. He's working from home, taking care of me and of my kids...and I have the guts to ask him to be more loving to my kids? I look at him and he looks old, weak, tired...and he can't walk right or move his left wrist properly...I'm sure he's got some damage on his wrist and his legs from the many times he had to break the bathroom door to get to me...and from the time he had to walk through glass to keep me safe...and since I'm too afraid to be alone he hasn't been able to have it checked out...

 

Seriously, how much can a family take? And it makes me feel like they would be better off without me...yes, they would suffer for months, but then they'd be able to have a normal life....but then I think about leaving my kids without a mom and I feel guilty...and TRAPPED in this Hell that I cannot escape...and I ask God, what did I do in my life to deserve this? What did my kids do?

 

I sure know what you're all going through and I'm so sorry....some days I wish I could go out like a mad woman and scream at the top of my lungs that benzos are evil...I wish I could make a thousand calls and save others from this Hell...even if I me and my family are still in Hell...

 

So sorry to be so negative, but I had to let it all out...and while I'm writing this, my kid is out there calling her mamma and I feel a mix of love and apprehension...and feel glued to my bed...

 

And my mom? Well, she thinks it's all in my head...and it really is, but it's not my fault...I keep repeating that to myself all day long, that it's not my fault...but the guilt, it's still there...

 

And that is what I wanted puffin to know---that the guilt and shame of this are enough to drive one mad

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Oh, mmir, you just keep hanging in there, hon.  I was hit with a huge wave at the 11th month mark and many other members keep getting hit as the withdrawal process continue.  You WILL see improvement and you WILL be the great Mom and wife that you were meant to be.  Please trust me on this.

 

I have grandchildren and 2 wonderful children.  I remember thinking that if something bad happened to them I wouldn't have the empathy to care.  I swear if someone told me that one of them died I would have said "Oh, really?"  There is such a big disconnect to reality but it does come back.

 

As far as the rage.....I told my husband that if I raised my hand it meant to "back off" and don't say another word.  I would then get up and leave to my safe place.  Apologize in advance and let him know how much you appreciate all that he is doing.  No one can help us (besides caring for the home and children).  We are basically alone in this journey.  The only ones that know what we go through are the members here on BB.

 

Baby yourself and try to stop feeling guilty.  Your job is to get well.  Once you are better you can do some wonderful things for your family.

 

My heart broke reading your post.  Be determined and keep persevering.  By the way, you don't know that you will become protracted......not many do.

 

Love,

 

Patty xo

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I am almost 14 months off and the last few days have been horrible. I've been hit with severe anxiety, nausea and stomach pain and the crying is bad too.

 

I pray this is a turning point. I'm so tired of these morning things.

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Patty, Patty, & mmir,

 

I don't have time to answer each of you right now, but I just wanted to update and relieve mmir's fears especially...it turned out to be a brief,  one time incident and he was fine again the next day and from then on.Yesterday,  we even spent a wonderful day at a river with a waterfall you can slide down. It was to celebrate our son's 15th birthday. Mr. Puff happily jumped off rocks, slid over the falls, & carried me over all the scary crevices upriver as we went off exploring.

 

In our case, I had followed some bad advice early on and used bio-identical progesterone cream not knowing that it, too, works on the GABA receptors and builds up tolerance and has a similar withdrawal syndrome. It helped me thru for about the first year and then tolerance set in and I stopped it abruptly as soon as hub got better...that's when my sx became much worse and I went searching for answers and found out I had been caught in a similar trap as he had. So...when this last "episode " happened, I pretty much lost it.  Please forgive me for causing undue stress on you all.

 

I just want you all to know that that was a very brief(but intense)  setback and overall things are going much better...almost normal again most of the time. What makes this so hard on families is that life just keeps going on...the support spouse has physical setbacks, kids still get sick, bills keep on coming,  teens need driving lessons,  grandmas & grandpas have health emergencies,  holidays & birthdays come and go...it is truly an unnoticed miracle for us to survive this. We're all miracles here. I know Mr.Puff & I are. I don't know how we've made it (aside from supernatural help) because we are still a loving, growing family in spite of it all.

 

Mmir, you will make it too! The postings in the later months are made in the worst of moments. It wouldn't be possible to endure if it were consistently that bad. I know that for me, I post at impossible moments and then feel a tremendous pull to make up for lost time in the good moments and forget to report back about all the good times. For me too, it's hard to remember the good times while in the bad and vice versa. So the true picture for you to see is that,  yes, he had a stress -induced setback at 31 months but was close to normal since St.Patrick 's Day...I guess that 's why the setbacks are so difficult to accept. But anyway that's all they are is setbacks...not disasters. Please, take hope!  Things really do get better. I will be more careful with my postings though in the future.

 

puffin

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So sorry puffin! I did not know you had your own withdrawal symptoms too! Oh, Lord! So, so sorry! I truly hope and pray this is it for your family. I am devastated not only for what we're going through but I feel all of what you're all going through and in this condition it has made me lose faith in humanity...but seeing how you and other spouses have stuck with their partners through withdrawal shows me that there's still good in this world.

 

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Oh, mmir, you just keep hanging in there, hon.  I was hit with a huge wave at the 11th month mark and many other members keep getting hit as the withdrawal process continue.  You WILL see improvement and you WILL be the great Mom and wife that you were meant to be.  Please trust me on this.

 

I have grandchildren and 2 wonderful children.  I remember thinking that if something bad happened to them I wouldn't have the empathy to care.  I swear if someone told me that one of them died I would have said "Oh, really?"  There is such a big disconnect to reality but it does come back.

 

As far as the rage.....I told my husband that if I raised my hand it meant to "back off" and don't say another word.  I would then get up and leave to my safe place.  Apologize in advance and let him know how much you appreciate all that he is doing.  No one can help us (besides caring for the home and children).  We are basically alone in this journey.  The only ones that know what we go through are the members here on BB.

 

Baby yourself and try to stop feeling guilty.  Your job is to get well.  Once you are better you can do some wonderful things for your family.

 

My heart broke reading your post.  Be determined and keep persevering.  By the way, you don't know that you will become protracted......not many do.

 

Love,

 

Patty xo

 

Thanks Patty! I have followed your journey and all that you've suffered and I'm so sorry you have other issues now. I know you've had it bad...and it gives me hope to know that your connection to your loved ones has improved. I cry to God every day telling him to give me DP/DR/anxiety/depression/pain but to let me feel love for my family...that's all that matters to me.

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mmir, thanks for following my journey.  I don't write much on my blog anymore and I never did much complaining.......well, maybe a few times.    The symptoms I have been having lately are probably due to a yeast infection and Lyme's disease.  I am about to embark on treating the Lyme's in another day or so.  I probably didn't have protracted withdrawals for 4 years...but I am pretty sure it lasted at least 3, which is pretty rare.

 

Your love for your family is temporarily locked up but it is waiting to spill out and lavish your loved ones.

 

Patty  xo 

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Hey everyone... I'm coming up on 18 months soon, just need some reassurance that this still sounds like wd.... some days I just don't know anymore...

 

I was prescribed 0.5 mg of Clonazepam for Burning Mouth Syndrome in Dec 2010.  Took it for 3 and 1/2 months, including a 1 month dry-cut taper.  I started tapering off because I was having interdose wd, although I didn't know the name for it at the time.  The doctor said I could just stop taking it, which I tried to do, and got really sick, so got back on, and dry-cut tapered for 1 month.  Like alot of people here, I didn't know anything about tapering, and thought that was pretty slow, especially since the dose was so low.  Six days after the last dose on March 23rd, 2011 I got really sick, with at least 40 sxs.  It was unimaginably horrible, as you all know.

 

At about 7 months off, I was doing pretty good, and by month 11 I would say I was about 80% healed, if not more. I was travelling, and living again.  Still had some minor stuff, muscle aches, nausea, head pressure, but nothing horrible.

 

Then I had surgery on Feb 23rd (gallbladder removal).  I was 11 months off at the time. Well, since then all hell has broken loose. I have MAJOR DEBILITATING anxiety that actually builds up and hurts (never had this before benzos, and never had it during the 1st year off in wd), got akathesia where I paced and paced for 2 weeks straight -couldn't eat or sleep...

 

It has been 6 months since my surgery.  It has been 17 months since my last dose of benzos.  I still have bad anxiety that comes and goes, head pressure, ear pressure, body aches, agitation, panic attacks (never ever had this before), adrenaline surges, crying spells, ... I never even had alot of these sxs the first year off...it's like the sxs changed....

 

I guess my questions to you are ...

1) Can you get NEW sxs like that after 1 year?  Is this still wd?

2) Do you think the surgery set me back? Is that even possible?

 

I was so careful about the surgery.  Insisted on no benzos, no quinolones, etc.  These are the meds I had that day: I had general anesthesia with propofol, got fentanyl in the hospital that day for pain, also 2 oxycodone pills, took only Tylenol after that for pain - refused all pain meds, got IV Reglan (anti-nausea med), also got IV iodine for scan at hospital, and IV penicillin called Piptazo...I know, I still got alot of meds that day:(

 

The only med I have taken since is Benadryl or Atarax as needed, prescribed by my doctor since the akathesia episode after surgery.  I don't drink any caffeine, no coffee or soft drinks, no alcohol, no sugar/sweets... I am extremely careful.  I have also been fully checked by several doctors and have a clean bill of health (all bloods checked, thyroid, MRI, EEG, the works). I have also done CBT therapy to help with the anxiety.

 

I'm just so discouraged because I was low dose/short term, I have abided by all  the "rules" about meds and food... and I'm still so sick at 17 months out.

I guess I just needed to hear that this is still wd and I'm not gonna be like this forever. Thx.

 

 

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August,

I can answer question #1...the answer is yes. My hub had new sx after a year and it did turn out to be all benzo related. He never took any other med or supplement (after 6 months) and he is recovering well now at almost 32 months out after a c/t (1.5 Mg ativan for 5 months, 2 months of that was failed c/o to Valium).

 

He still has tinnitus and sensitivity to stress and fatigue but is functioning pretty much normally 99% of the time.

 

puffin

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Thank you so much for answering.

I'm glad to hear your hubby is doing better. I've seen your posts, and you guys have had a really rough time. 

 

Any other responses would be more than welcome... thanks guys.

 

 

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August: It may have nothing at all to do with the surgery meds, I thought I was healing between months 10-17 only to get sick again month 18.  It's always hard to say once you get past a year what is wd and what isn't. 

 

Patty:  I'm glad you no longer consider yourself in wd...this is great news.  I'm sorry to hear about Lyme's but at least now maybe you can take antibiotics and rid yourself of it?  Helpme123 was just diagnosed with Lyme's, too.  She posted about it on her blog.  I told her to contact you since you had also been diagnosed. 

 

BW: I've followed your story, too.  I'm so happy Mr. Puff is doing fine after his flareup the other day.  It's reassuring to me to follow his story because I am just 3 months behind him from a c/t, as well.  Just like him, I started finally getting some real noticeable healing beginning about month 26.  I'm still sensitive to stress and sometimes have some weird symptoms pop up briefly from time to time.  It's a wild ride, that's for sure.  Please keep us posted.  It'd be great if he was willing to write a success story in his own words, too. 

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Hi L123,

 

Thanks for responding, but you're kinda freaking me out... lol  What did you mean it's hard to say what is and what isn't wd? I KNOW that... that's why I needed reassurance.  When you say you thought you were healing between months 10-17, but got sick again at month 18...was it wd for you? I'm kinda freaking out... I barely ever post questions, (only post support for others when I can)...I reeaalllyyy needed some reassurance today, as I'm not in a very good place, and that wasn't too reassuring. lol  But thanks anyway. 

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August:  I'm sorry to freak you out.  My intention was to reassure you.  I guess what I'm saying is that after about 1 year, the symptoms come and go and it's hard to tell if they're withdrawal symptoms or mental symptoms that have always been there.  That's how it was for me, anyway.  When I said I got sick again around month 18 what I meant is that the depression came back and I was left wondering if it was just the real me or still withdrawal that far out. 

 

It sounds like it's still withdrawal for you because you said you didn't have the anxiety prior to benzos.  That's usually a good measure...did you have the symptom prior to benzos. 

 

Sorry again if I upset you.  I must come across too blunt online or something.  lol. 

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august:  in answer to both your questions, 1 & 2, yes and yes.  (1) at 22 months out i still have some wd symptoms, but nothing like earlier on, and the windows of total clarity are getting longer and larger.  (2) i had surgery 6 months ago for a hernia repair.  i cautioned the doctors about pain killers which i also limited to a couple; nevertheless, i was set back big time.

be patient, it gets slowly better.

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Thanks L123... I knew you meant no harm, I see your posts and know that you're a kind helpful person...    I'm probably way too sensitive right now. 

 

I never ever had anxiety before benzos... but that's what's so weird, I didn't have it in the first 11 months of wd either...it's like it started like a light switch at 11 months off.... and it's excruciating. It's not normal!

 

I keep telling myself that it IS wd, and that it will go away.  There are days when it is much less...so I tell myself that is a good sign too.

 

I guess I needed others to tell me that it sounds like wd, that if I wasn't like this before, that if it waxes and wanes, all that stuff... I know it by heart, I just don't believe it right now.  :'(

 

 

 

 

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Thank you Managed.  I needed to hear that. 

 

It's just that all of these sxs are NEW, that's what freaked me out.  I didn't think I would start getting new ones after 1 year.

 

Feel better

August

 

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oh and L123, forget to say... I hope your depression has lifted and that you're feeling better. 

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Hi August and everyone,

 

I started having serious panic attacks just after one year off, and other than an episode or two during my 3rd or 4th month off, I've never experienced anything like that in my life.  So I guess "new" or "former" symptoms do occur this far out.

 

I'm just over 15 months off and still have some challenges.  Things are more tolerable for me as I've finally been able to accept the fact that this will take as long as needed to resolve, if ever.  In addition to the Z drugs and benzos, I was given a fluoroquinolone while in the ER for pneumonia back in 2010.  I'm not sure if that drug has contributed to my challenges, but I can't worry about it now.

 

My remaining symptoms are muscle wasting, tinnitus, ear crackling/popping, anxiety (much less these days), irregular bowel movements, insomnia, hypothyroid and Hashimoto's (my endo thinks these could go into "remission" so I no longer take Synthroid).  I've seen some improvements as well - no more depression or crying spells and my ambition to get things done is back, in addition to numerous "little" symptoms that have lifted.  I'm able to once again be the dad that my children deserve more days that not, and that feels good.

 

Wishing everyone continued healing,

 

Rico

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Hi Rico...

Thanks for that.

 

I noticed you mentioned Hashimoto's in your list of wd sxs remaining. Do you and your doctors believe your thyroid issues are a wd side effect?

 

And, do you think your panick attacks were due to your thyroid problems? Or did you not have the attacks at the same time as your thyroid issues.

 

In any case, I hope they DO go into remission ... and GREAT to hear your kids have their Dad back.

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August - wanted to add something to this thread and hope I can do it so you understand what I mean.  If all these sx are new to you since your operation.....it could be that the operation just aggravated your withdrawal....whether it was the meds you took or just the fact that your body went through the trauma of surgery....that could have agitated an already very sensitive CNS due to your w/d.  You may not have had all those sx in the first year of you w/d, but the operation may have just re-sensitized your CNS.  When we have surgery, it is an assault on our CNS....so you had a double assault.  I hope that all makes sense....If you had never had surgery, you may have gone on to heal with no anxiety etc.  Or some other stressful event could have triggered it....It takes a while and we are never really in control of any of this....extremely frustrating!

Hoping2BFree

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Hoping2Bfree,

 

yes, I understand what you mean... Thanks so much.  I am in tears today.  I just really needed some reassurance. 

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Hey guys,

when I can officially join this club in 3 weeks... do I at least get a welcoming party or something 

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August -

 

BB member Perseverance has some really good research info on HPA Axis dysfunction (due to benzos and w/d), which causes endocrine and hormonal problems.  That said, I have also done a lot of research on this and am certain that benzos and/or w/d do cause thyroid problems.  I also had low testosterone for several months, and now things are back to normal.  So, while I believe that my thyroid and autoimmune issues were caused by benzos and/or w/d, I can only hope that things will "normalize" on their own.

 

Regarding the panic attacks, I have no idea if they were caused by my thyroid or simply w/d.  Thanks for your positive comments.  Please don't worry yourself too much about new symptoms showing up this far off, as I've seen this happen to others on this site, myself included.

 

Rico

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Hey guys,

when I can officially join this club in 3 weeks... do I at least get a welcoming party or something 

 

Hiya August ... good to see you posting on the forum asking for support which you so richly deserve.  You are welcome to join this club anytime but I'll warn you, it ain't a fun one to belong to. 

 

You know, at 2 years off my ears started making weird clicking noises and they felt suddenly full, fat, swollen and prickly.  I had never had anything with my ears going on prior to that.  I know that that is totally not a serious symptom like what you are reporting but I'm saying all manner of weirdness can take place, even after a year off.

 

Hang in friend ... we are healing.  (I hope.)