Mentoring - those who are well (or better) reassuring those who struggle.

Thank you Flip. Love the quote.

 

You are correct, the pandemic makes this so much harder. Plus, social unrest. Personally, I'm closing a business and negotiating a contract for a new position. Add I have a mom with Alzheimer's and two teenage daughters. Some days, I think I'm going to lose myself completely. I just want peace.

 

LD

You really have a load, LD. I am so deeply sorry that you have so much all at once. Keep talking and don’t isolate. 

where does the faint  feeling come?  jumping nerve pain in my arm, laying down heart palpitations

I've been having these sxs  on and off...

I take an ad  which I took along with K ... It wondering always if that is hindering my sleep...

on  K 0.19  from 0.5  took me a year+ to get there , I'm so tired elusive sleep, no naps, no energy...

lonely as hell  scared it while take along time to feel normal again....  can't deal with people catch 22

no family,  friends  see me normal, ... venting :'( i feel so stuck  and in my 40's  feel like a sick senior citizen

This is a great thread and gives me hope reading through a few pages.  Personally I am at a low low point this morning.  Crossing over to Valium (Teva) was actually going pretty good and gave me some hope with a few great days this past week that I had not had in a very long time while on K.  Last few days things seem to be moving back into the same horrible state of when I was on the k though.  I know there will come a day when I am off this poison, however, to what cost I dont know.  Thus far I have been able to keep my job, house and kids moving forward, however, if my transition to V does not allow me to stabilize I fear the only path forward is to pull back from life for however long it takes and ride out the remaining portion of my taper living off of my life savings for a year or more and hoping for the best on the other side.

 

Just venting a little guys....completely defeated today.  My heart goes out to the entire Buddie community and pray that some how some way we can all get through this and be at peace with our lives.  Any words of encouragement or advise are appreciated

Take Care,

MW

 

Mtwhitney,

 

I'm sorry your day is not a great one. We all have those way too often. Know that your future is bright. Two steps forward and one step back, right?

 

Appreciate any wise words and all the support.

 

Closed my business on June 30th. Moved the last of everything out today. On to new and brighter things.

 

LD

 

 

Thanks LD....looking forward to celebrating the day I am benzo free. A little sleep tonight and tomorrow things will look better I am sure...  Good luck with your new ventures...

MW

Hello group,

 

I wanted to share my story. Not sure what my goal is here but I guess it's good to write it out.

 

In early February of this year, I developed extreme insomnia. I believe it was the result of a strong THC edible (25mg) but have no way of proving that I guess. It felt like I was getting 0 sleep for weeks. I had always shied away from prescription drugs so initially paid thousands of dollars for supplements, functional medicine doctors, blood tests, etc. Not getting results, I decided to put my faith in conventional medicine as I felt like I was dying. I got prescribed Klonopin, Xanax, Ativan, and Ambien (not all at the same time) to try out. I had never taken a Benzo before in my life. The first time I took the Xanax I remember thinking, wow I feel normal for the first time in a while. To give you a sense of how agitated my brain was, the first time I took a 0.5 Klonopin tab, I only got 2 hours of sleep from that. Likewise a 10mg Ambien or a 12.5mg Ambien CR only got me 2 hours of sleep. When I woke up from those 2 hour sleeps my heart was racing, I was covered in sweat, and I felt panicked. It was like my brain hated being "forced" to sleep before it was ready. I also tried a variety of other legal and illegal drugs which only made things worse (especially GHB).

 

Eventually it got to the point where 0.5mg Klonopin got me 10 hours of sleep the first night, 7 hours the 2nd night, and 5 hours the third night, so I was taking it only every 2-3 days. When my doctor wrote me a longer prescription for it I told her I didn't want to take it because I had a strong fear my body would become dependent on it. She assured me that wouldn't happen.

 

The horrible symptoms started almost immediately after I started taking benzos and z-drugs. The worst was my brain felt like it was burning, but whenever I took my temperature it was normal. Other symptoms included my period stopping, 70% of my hair falling out, racing negative thought loops, severe acne, rapid heart rate, difficulty socializing, suicidal depression. I took medical leave from work because I couldn't really think. I felt like I had dementia. I went to the emergency room for the first (and hopefully last) time in my life due to chest pains. This was during the height of the Spring 2020 COVID spike so it was quite scary to be going to a hospital, but I felt like I was dying. Tests came out normal. I had no idea what was happening to me because I was assured I hadn't been on Klonopin long enough to be in withdrawal so started to plan out my own death.

 

Around the same time the insomnia started (before I had taken a Benzo), I got baseline bloodwork done to begin an embryo freezing process. The bloodwork showed I had basically no eggs left and was in early perimenopause at age 39. So I became convinced all these symptoms were due to some sort of violent perimenopause. I joined various menopause support groups on Facebook and all I saw were women complaining of horrible symptoms which only confirmed my worst fears. Menopause doesn't "heal" and the symptoms can last for years. In my panicked state this became my obsession and I spiraled into suicidal depression and anxiety. I feel like I've aged 10 years.

 

To make things even worse, I found out my husband is very adamant about having at least two biological children (related to him) and he would be absolutely crushed if he couldn't have this.

 

Thankfully I found BenzoBuddies but was still convinced my issues weren't due to benzos. But when I told my husband I only felt normal on benzos he put two and two together and told me to stop taking them.

 

I cold turkeyed because I didn't know any better...had only been taking 0.5mg every 2-3 days. But I read ThEwAy2's success story and I believe this saved my life. I wish someone had told me this in the beginning: You will need to suffer through a long period of insomnia, but your mind will eventually learn how to sleep again without meds. If you take pills to force your brain to sleep, you will continue to get worse and worse.

 

Symptoms were horrible after the CT and on top of the brain burning, vein pain, pelvic pain, insomnia, extreme anxiety, extreme depression, etc. I got my first (and hopefully last) experience of auditory hallucinations.

 

Eventually symptoms slowly started getting better. Sadly it seems the hair that has grown back is much thinner and only grows about 2-3 inches long before stopping. But I was able to return to work 1 month after my CT. I still have weird bone/joint/vein pain most nights, and generally feel physically ill. But at least I'm getting 6-8 hours of unmedicated sleep a night.

 

Now I feel like a shadow of my former self. I am actually in perimenopause and so I'm not sure if my remaining symptoms are due to that or Benzo withdrawal. I've had one cancelled IVF cycle and it's unlikely future IVF cycles will work. What is in store for me with early menopause? I've read about increased risks of dementia, heart disease, and osteoporosis, not to mention advanced physical aging.

 

Additionally, I'm faced with the choice of staying with my husband knowing I took his lifelong dream of two children away from him, or getting a divorce. I could do donor eggs but I'm not comfortable with that choice. I no longer feel mentally or physically capable of going through two pregnancies, let alone the newborn phase of very little sleep and raising toddlers. I am leaning towards divorce because I don't think I could live with the constant reminder that our childless marriage has crushed my husband's spirit and goal in life.

 

I know I have a lot to be grateful for: I have a good job that I enjoy, no money worries, friends & family that care about me. But I can't shake this feeling that my life is over, and I have no hope for my future.

 

When I'm feeling sorry for myself (which is most of the time) my husband tells me I'm not the first woman to go through infertility, but I reply that I must be the first woman to go through infertility, early menopause, and Benzo withdrawal all at the same time during a global pandemic.

 

Thanks for reading my story.

Anxious Anne, you have shared an incredibly moving story and I just wish that everyone had a chance to read it, not just us on this particular thread. Have you thought of opening a new topic and cut and paste your story into it. I am sure you would have lots and lots of viewers and lots of shared experiences. Thank you so  much for sharing what you are going through. I hope it helps your heart and connect with others going through similar circumstances.

 

I am so sorry that you got put on benzos for insomnia- and have been affected so badly by them. We all were put on them for something and had no clue the devastation they cause. I also was unaware about how to get off them. I essentially cold-turkeyed by coming off of them too fast. I was on a high dose for several years and tapered for three months... total hell.

 

I went through an early menopause, in my late thirties, and I cannot have children. In my case, however, my partner didn't put pressure on me to have children. Its just that when I wanted one, it was too late for me. Now I am glad that I didn't follow through with adoption because benzo withdrawal has been so physically and mentally devastating that I couldn't be a good mother. Its okay, there are many wonderful ways to contribute to the world without being a mother. I worry about dementia all the time, in fact, too much. Benzo withdrawal has left my mind severely cognitively impaired and add in early menopause... I seem like a perfect candidate. I just have to maintain some hope for recovery but plan for just in case.

 

So yes, I guess, I went through early menopause, infertility and benzo withdrawal BEFORE a global pandemic, not during- you certainly have a lot on your plate.

 

I'm so sorry for the situation with your husband and I do hope you can come to an understanding/resolution so you do not have to dissolve your marriage. That would be a real shame if you both are happy in other ways.

 

Thinking of you and sending you support.

 

 

 

Anxious Anne,

 

I think you are still suffering both physically and mentally, I believe if you give it some time you will begin to recover, the body is remarkable.  I am so sorry you have been through this at a very crucial time in your life.  I was in menopause when the nightmare began for me.  My daughter is grown and my husband has been my rock.

 

If your husband loves you, he will support you through this.  All things happen for a reason, I hope you can make a full recovery.  Take care of yourself and allow time for healing.  Sending a virtual hug your way..

Wow, Ann, that's quite a story. I, too, am so sorry you are going through so much.

It's only been the last couple of days I thought maybe my period stopping was due to benzo use.

However, I was 47 when it stopped so menopause sounded reasonable, plus I've had some deep trauma in the last couple years.

 

I hope you will come back and continue to post. Please don't hesitate to reach out if you need someone to talk to.

 

Sending you love and light,

Karen

Anxious Anne,

 

I think you are still suffering both physically and mentally, I believe if you give it some time you will begin to recover, the body is remarkable.  I am so sorry you have been through this at a very crucial time in your life.  I was in menopause when the nightmare began for me.  My daughter is grown and my husband has been my rock.

 

If your husband loves you, he will support you through this.  All things happen for a reason, I hope you can make a full recovery.  Take care of yourself and allow time for healing.  Sending a virtual hug your way..

 

Hi seasalt- I'm pretty sure I was hitting menopause when I found out about tolerance. I was at a high of 4mg clonazepam summer of 2019. Now I'm wondering if the benzos may have something to do with it. I mean, they mess with pretty much every body system. I started my taper in Nov 2019 at 3mg and am now at .15mg so I am in the home stretch.

Can I ask if you took or used any hormones to help you through menopause? One of my biggest fears is that I will have to stop using my topical progesterone because it works on gaba receptors. Look forward to your reply.

 

Karen

I went through menopause at 49.  At 50 I had what I think was my first panic attack.  Dr put me on Xanax and things went downhill from there.  I have never supplemented hormones, but my blood tests showed no detectable estrogen.

 

At this point, I will never take another medication unless I am on my death bed.

I went through menopause at 49.  At 50 I had what I think was my first panic attack.  Dr put me on Xanax and things went downhill from there.  I have never supplemented hormones, but my blood tests showed no detectable estrogen.

 

At this point, I will never take another medication unless I am on my death bed.

 

I completely understand.

 

Unfortunately I am one of those rare women who cannot function with no estrogen. I need it so I do supplement. Thankfully I'm well informed and understand using estrogen cream does not increase my risk of cancer so I'm perfectly comfortable using it. However, I also need to use progesterone with it because I still have a uterus. That's where the situation gets a little hairy.

 

Breathe In Calm,

 

Oh my, I just remembered that back when this all began I was using an estrogen cream (vaginally). I stopped because my dentist told me his wife believed she had gotten ureter cancer from using it. 

 

That same month that I discontinued, I became dizzy off and on, and noticed I was holding my breath a lot with out knowing until I would gasp for air.  It progressed to weakness and loss of sleep.  Then eventually what I think was a panic attack.

 

If you do decide to discontinue any form of hormones, please do it gradually.  In thinking back, I now think that the estrogen cream may have been giving me enough to be functional, when I removed it things went bad.

 

My heart goes out to all of you, we all just need to get off these horrendous benzodiazepines..

 

Take care!

I just found this thread and was actually thinking - how do I find people who have recovered to answer my questions! I know that everyone is different so it can be really hard to answer questions. That said, I’ll ask anyway!

 

I am at week 11 after C/T from Xanax 0.25-0.5mg 2-5 times a weeks for 3-4 months (more at the end due to interdose withdrawal). This has, of course, been hell with chemical anxiety being by far the worst symptom and completely debilitating.

 

Whenever I have a window that lasts a day, I immediately start obsessing about how will I know when I’m healed? The windows I’ve had have been nice, but usually are followed by three days or more of waves (I get a mini window every night though, so that helps.)

 

So, my question is, how did you know you were healed? How do you stop looking over your shoulder wondering if you will have a wave or set back? I know healing isn’t linear, but is there a kind of improvement trajectory? I feel like there is, but I’m losing perspective a bit because I’m so close.

 

😊 thanks!

I am so envious that you were able to c/t!!!  I can not comment on what you might experience moving forward.  The fact you are at week 11 , I think you might have a decent recovery.  I hope others can give you advice...

Breathe In Calm,

 

Oh my, I just remembered that back when this all began I was using an estrogen cream (vaginally). I stopped because my dentist told me his wife believed she had gotten ureter cancer from using it. 

 

That same month that I discontinued, I became dizzy off and on, and noticed I was holding my breath a lot with out knowing until I would gasp for air.  It progressed to weakness and loss of sleep.  Then eventually what I think was a panic attack.

 

If you do decide to discontinue any form of hormones, please do it gradually.  In thinking back, I now think that the estrogen cream may have been giving me enough to be functional, when I removed it things went bad.

 

My heart goes out to all of you, we all just need to get off these horrendous benzodiazepines..

 

Take care!

 

Noted, thanks! I actually do stop my creams for the first three days of every month to let my receptors "clear"... never knew that was a thing, but quite a few hormone docs recommend this approach when static dosing.

 

Your experience doesn't surprise me... but I think it may have had more to do with your estrogen level dropping. When our bodies lose E, they substitute in adrenaline, so it makes sense that anxiety levels increase.

 

Thanks, Seasalt 52! I quit C/T before I knew better. It has been quite hellish and I’ve had to take several leaves from work. Things are finally improving but I’m still on leave. I’m lucky I could do it because working and C/T don’t mix. The chemical anxiety and five hours sleep are relentless. That said, the past two days were better, and I live for evening windows that are pretty consistent. Hopefully i will heal soon! Best of luck to you!

Five hours of sleep is actually good, you are on your way to complete recovery!

As, thanks! That’s nice to hear. I do wake up 6 times! Until the chemical anxiety is gone, I’m not sure I can work :-( I keep hoping it lets up soon.

The chemical anxiety is just awful!  I wake several times during the night as well and average about the same amount of sleep.  I have been eating foods with msg, and others have said this makes things worse.  I am going to try to cut that completely out of my diet and see what happens..

This is an absolutely wonderful thread.  Over the course of the past several days, I read the entire thing, from the very first post by Fliprain, through the end of 2015, into 2016 and to the present day.  I want to say that I have derived so much comfort from it, from the little community that formed on this thread and that I could sort of join vicariously for a while, from everybody reassuring everyone else, and from the words of wisdom shared by Fliprain, MTFan, Mary, and others. 

 

My situation seems to be a little different than most, in that I was on lorazepam (and for a few years, clonazepam at the same time) for about ten years, never seemed to hit tolerance (at least, not that I am aware of), and it wasn't until I tried to start coming off of it and got down below .5 mg a little over a year ago that I started to be hit with really tough symptoms.  Well, in the spring of last year when I went below .75 mg, I had some tough symptoms like eye twitching, muscle stiffness, severe anxiety, and the like that worried me enough that I went to see a neurologist to rule out anything serious.  But I was working my way down, not terribly worried in the sort of existential sense that I am now, which is to say, I still felt like myself.

 

It wasn't until I went below .5 mg that I started to suffer from cognitive impairment and memory problems, which persisted through a long hold and have only gotten worse over the past year -- as I've tapered down, OR as time has gone on, depending on how you look at it.  Couple that with the severe anxiety of a taper, the DR/DP of withdrawal, and the need to hold on to a full-time job, and I'm really having a tough time. 

 

I don't know if this is withdrawal, or dementia.  Is the timing of the withdrawal just coincidental? I don't even know how I would find out.  I talked to one pdoc about it some months ago and he thought it was probably about insomnia, but my sleep has gotten somewhat better (thankfully) in recent months and my memory has continued to get worse.  How would I find out? I've been tempted to reinstate, and see if my memory comes back, but after all that I've been through on my way to this dose I'm at now, I would really hate to jeopardize my progress.  But I'm so scared, so much of the time. 

 

I would really appreciate any reassurance from anyone who has been where I am, and gotten better.  Or just any words of comfort.  This is the hardest place I've ever been.

 

Haimona

Hi Haimona,

 

I happened by today on this holiday and thought I’d chime in. Of course, I’m not a doctor, so can’t say this isn’t dementia for you, but I’ve never seen anyone write as cogently as you do who has dementia.

 

I struggled with these thoughts, too. In fact, I believe I was at about the same taper place as you are right now when I began to ask my psychologist what he thought. He was concerned enough to send me for a neuropsych exam where they ruled out dementia.

 

Then sometime later, after finishing my taper, and a couple of years going by, I retook the neuropsych exam and the scores were a lot better. That was reassuring. Plus it still showed no sign of dementia. If you are interested in those details, go look at my old progress log (see signature link) where I am a bit anal retentive about documenting symptoms.

 

One important thing I learned during this was to not freak out over what was happening. I mean, I DID freak out a lot over what was happening, but then it changed. I seriously did think I was going to be forever half aware of my surroundings and missing the finer points of a conversation, but honestly, I am not that way and I feel pretty sharp most of the time.

 

Things really changed for me when I cleaned up my diet. I also learned that I have that pesky MTHFR mutation and when I utterly stopped eating anything with synthetic folic acid added and started supplementing modestly with some good B vitamins, the fog cleared out. So that might be another thing for you to look into.

 

Please take heart. I’ve never known anyone who didn’t improve. Some take a very long time. Some have died in despair before they healed. That’s one of my deepest sorrows, that a few folks exited before they knew the joy of feeling whole again.

 

It was nice to “meet” you, and I wish you courage and hope and persistence.

❤️

Flip

Thank you so much for replying, Fliprain! I really appreciate it. 

 

I have thought about going for neuropsych testing, although I'd want to wait until I have been vaccinated against Covid before I would spend hours sitting in a doctor's office like that.  I also have been, honestly, afraid of what I might find out.  I mean, I know my memory and cognition are bad.  I forget things all the time, I have to write things down so I won't forget them, and things that used to happen smoothly and automatically -- like turning on a faucet or doing the dishes -- seem to now require conscious excavation from whatever part of my memory has held them all these years. And I find even the things I know, I don't feel sure of anymore, like people's names or the spellings of words.  I know them, but I don't know that I know them, don't feel confident in my knowing.  It takes me a beat or two to come up with them now, and sometimes I still feel worried that I'm wrong, where I used to feel confident. (Although I'm sure some of this is anxiety.) So sometimes I think, of course the tests would show deficits; what they wouldn't show is what is causing the deficits.  Or maybe I just don't want to know. 

 

I have been starting to think that if I could muster up the energy somehow, I would like to look into overhauling my diet.  During this pandemic, my diet has gotten pretty sloppy.  Lots of processed foods, lots of comfort food, whatever is easiest.  I would put the effort in, though, if I thought it would help.  I would do just about anything at this point, if I thought it would help.  The one thing I have been doing (more or less) consistently is exercising, which mostly means walking these days.  I can truly see a correlation between doing that and feeling better and somewhat clearer.  I see a lot of conflicting advice as to what diet is best for benzo w/d and cognition, and I don't tend to like the idea of too much restriction, but I am definitely open to making some kind of change in that area.

 

Fliprain, you have my sincere gratitude and respect. I hope so much that one day, I can be well enough to do a tiny bit of what you've done here.

 

Haimona

Patience, Haimona. Keep talking. Rely on others to help you endure. Hang on. I’m pretty sure that you ARE going to feel well enough to do just that!