~~The Bedridden Club~~

Marie –

Your poor son has been in the wars lately hasn’t he. Oh dear – that really is a worry. I’m sorry to hear that. The ER is one of the last places anyone wants to end up in. It shows how strong you are right now that this didn’t throw you into a wave. The poor guy will find the crutches tough going with the shoulder. Cripes. I suppose if you are very sporty accidents will happen and its better being out in the fresh air on a skateboard than staying in playing Fortnight and eating junk food. I used to like roller blading and ice skating but could never use a skateboard. They aren’t easy to get the hang of.

 

Good riddance to your vibrating! Yay! Great to hear that you are back to normal after the cut. The DLMT seemed like a lot of hard work to me in terms of faffing around measuring etc. but if you are willing to do all that then it would be smoother yet again than the controlled cuts. I didn’t mind the liquid Valium. It was a nice strawberry taste. I didn’t notice it losing strength. I had my second bottle for ages. Maybe it was weaker – not sure.  As you want to closely control your sx/taper it might be the best for you. I suppose it also takes away a certain element of the stress in deciding when to make the next cut.

 

I get the lack of motivation thing too and it lifts in windows thankfully. It is so not my character to do nothing and it drives me crazy that there are so many things that I could usefully do now that I am spending all this time indoors but I am often either too sick or too fed up to do them. Its not depression – things don’t feel bleak in that way. Its more just meh!

 

Lol the gel light still in the box. Same for my tooth whitening kit!  God knows when I will find the motivation to remove the box. I would like to try the gel nails. My nails are usually naturally strong and long but wrecked with the taper and keep splitting now. The gel would be good for keeping them hard I’d imagine. It sucks when you have to cut them all back after one breaks. My nails look a bit better but I’m not used to them short. Hopefully that and the hair loss are temporary symptoms too.

 

You have a great day too, 

Roxy 

 

 

Ladyden,

 

I am very impressed with your disciplined way of building up exposure to things.    Steady and sure. Its great that you have been able to get used to the car in a way that kept your sx under control. Breaking tasks down into manageable steps like that is a really clever way of doing things and managing stress. You are a woman on a mission smashing those goals again and again with brilliant results. At this rate you will be driving your family somewhere beautiful for a day out in the not too distance future. Very inspiring.

 

Like Marie I am prone to jump in feet first. It didn’t serve me well on my taper as I did a crazy freefall most of the way down. Ill try my best to learn from it but know I am very prone to impatience. Healing in many ways is more of a challenge for my personality type than tapering when you are actively doing something. I could view the planning as the active part now with execution to follow when symptoms allow.

 

I’ll take your lead and start thinking of how I will break down the steps to a task and plan a reward into it. I know what it will be – getting my hair done. That will really lift my spirits as my hair has gone all horrible, thin and frizzy and I haven’t been to the hairdresser in over 7 months. I look like Worzel Gummidge! There are a lot of steps involved to get there though as agoraphobia has set in too. I may as well start planning the steps so I feel less like I am waiting for a bus the whole time. Step 1. Sitting when dizziness allows.

 

The palps and nausea are back in force today ugh. The window is closing so I am going back to bed. Hopefully a window will come along soon.

 

I hope you have something great to smile about today. Roxy 

 

Hey Therewouldbenobutterflies, welcome! 

 

I’m sorry that you too are suffering to the point that you are either bedridden or staying home. Its shows just how destructive benzos are that everyone on this thread past and present has found themselves in this position. The good news is that it is temporary. I do hope that you put your bedridden days behind you very soon.

 

The morning adrenaline surges are common. I got them at all times of the day though including in the middle of the night waking me up. They are horrible but remember they will go away. I still have the adrenaline surges but nowhere near as many as I did before I jumped and I am sleeping well now too.

 

Depression is very common too and there is a special board for that which you may have come across. Although I went though some very dark DR driven life review stuff and grieving emotions, depression was not one of my most severe symptoms during most of my taper. I had severe depression that I remember for about 2 weeks in the run up to my jump which has now passed and I am less depressed now that I’m off than I have been in a while.  I am still on ADs which seem to work for me though I want of all psychoactive meds (I'm on pregabalin too) in time. Like all of these symptoms, it is all temporary unless you already had it pre – benzos of course.

 

I hope that you are doing ok today?

Roxy 😊

 

Roxy,

I'm struggling, but I see you are too.  I am so sorry.  This is definitely not for the faint of heart.  I had a window yesterday, but today I feel a lot of panic, and overwhelm about how I will make it through months and months of this.  I wish someone could reassure me that things get better the more you taper, but from reading enough here, I know that's just not always the case.  I'm just at the beginning, so I'm mourning the loss of what I had just a couple months ago. 

I wlll be praying for you and hope your wave passes quickly.  You have come so far!  How has liquid valium done for you?  I'm going to talk to my Dr. about it.  Right now she just wants me cutting 1 mg/month.  That was probably OK going 10-9, but I know long term that won't work. 

Sending love!

I just ran across this group tonight.  I have a question....these posts were mostly in 2014 and I am wondering how many of you have recovered to have normal lives again after being bedridden?  I have been bedridden since 2019, so it's been 2 years now.  Do I have any hope?

Why can't you get out of bed, longing?

Ladyden,

Hooray!! Another successful day to visit your granddaughter. Its great that you were up to staying longer this time. You are making a new beautiful routine taking you outside the house and on the road

 

Did you find that you got dizziness or nausea during or after the car journey. I have crazy levels of dizziness as well as my PoTs (an existing condition). This is extra as its quite rotational and not linked to BP. It doesn’t help that I have trouble focusing, especially in the evening when everything is swimming. I also have nausea and suffer from travel sickness a little (very bad when I was younger). I was wondering if a car journey revs up any symptoms like that?

 

Your dream of driving again sounds like it is well within grasp. Now that you are getting out and about you will reacclimitise to reading the road as a passenger first. Lots of trips to see baby!

Brilliant advice as always Ladyden. The tiny things are indeed a big deal. I don’t know about warrior! – I’d say I’m just stubborn! You are such an inspiration to me exactly because you were in my boat not so long ago and you are doing the things I want to be able do successfully and watching you do more and more is very reassuring. Your and Marie’s support has really helped me with this all.

 

Distractions planned for the rest of the day are to learn about how to care for my two new houseplants, eat a nice dinner and watch some TV. I also plan to paint my nails later. I haven’t painted them since August as I wasn’t up to it. I used to do them every few days and they currently look a fright and have gone all soft and an odd flat shape. Anyway I am going to do them – with a light colour as hands still a bit nervy. Future goal – postbox red!

 

The cooking shows are great. I love them too. At the minute I am watching the Crown in and bits of Masterchef with John Torrode and Greg Wallace on catch up. I have watched Masterchef since I was a kid. The final is just over so I am trying to avoid finding out who won as I slowly catch up.

 

There are lots of good places for a holiday in England as well as London. Cornwall is absolutely beautiful. There is a little hamlet called Mousehall which is full of cats sitting on all of the little stone walls. I am cat obsessed so love it😊

 

Sending hugs and love back to you.

Roxy

Roxy thx for your reply. To answer your question...no it doesn't increase any symptoms after my car ride. I do notice that I have some very mild vibrating afterwards. Within 30 minutes to an hour it disappears. To start back getting used to being in the car this is what I did...

When I could tolerate sitting up for 30 minutes, I went and just sat in my car for 5 minutes then after a week or two increased by 5 more until I could easily sat in it for 30 minutes. While doing this, I turned on the radio or looked at the news on my phone to distract myself. Doing this 3-5 times a week. Then took my first car ride around my block one time every 2-3 days. These are the ones that made my symptoms increase. But once my body got used to riding, it settled down. When I had a nice window, I increased my block ride to going around twice, then 3 times and so on. After each car ride I laid down to settle myself for about an hour. Now that I can ride in the car for atleast 15 minutes, I'm going to start sitting in the driver's seat and pretend I'm driving. ( practice without car moving). This includes looking out the window to the right and left as if a car is coming, checking rear and side mirrors, turning steering wheel, etc. once I'm comfortable then I'll drive around my block once. Then increase the block number every week or two. Once I can drive for 15 minutes, I'm going to go drive myself to see the baby as my reward. It's very important to reward yourself. 

Best advice to anyone is TO HAVE A PLAN! I'm sure you'll be making more progress soon. I'm glad my experience is helping you to keep the faith.

 

*edit* Obviously I have benzo brain

Hi All,

I'm a new BB, you can see my history below.  It is not long, but I quickly became ill and spend my days in bed, a chair, or on my back patio.  I don't know if it is the V., or the C/T from the K. and baclo. that has caused this. The main things that keep me in bed are  1) crushing morning adrenaline rushes that leave me with w/d type shaking and last for 3-4 hours, not relieved by taking my morning dose; 2) depression- really dark, really sad, really hard to feel hope that I will ever find myself out of this mess.  I've never dealt with depression before and it's truly debilitating.

My psychiatrist insisted I make a DT from 10---> mg 4 days ago.  I'm sure that's not helping at all. 

Any positive support would mean so much. Thanks.

Welcome!!!! The good thing is that you've found BBs  There are a number of threads and others who's on your medication that can buddy with you to help you on your journey. Reading the threads will prove to have vital information and support but just be careful to not read any of the "I'm doomed, I'll never heal, I feel hopeless, etc" Right now with you being depressed will not be a good time to read others horror stories/bad experiences with sadness. What you need to do is read positive helpful or success stories. Your depression will fade over time. But until it does my advice is to counteract some of it with positivity. Distract yourself with things you know you have enjoyed in the past. Keep a journal. Write how you feel and then write positive things you're proud of about yourself. Take baby steps. This is NOT a race. Pamper yourself everyday! You deserve a little TLC. You got this!!!! It won't be easy but you're in the right place to get through it. Big hugs to you. You have our support.

 

Hi Lady-

 

Such great advice

 

I like your car ride “plan”....When you were talking about moving to the drivers side, I thought about going to the arcade and driving a race card  :laugh: But that would probably be too much stimulation.  But that’s me...just jump right in.  Just like my disastrous C/O and taper....Look where that got me.  You would think at my age (almost 55...just less than two weeks...yikes) I would have learned this lesson once or twice.

 

I’m so glad you are doing so well....It gives me so much hope for the future.  Both you and Roxy.  The “distractions” and “plans” are such good things to focus on. 

 

Marie

 

PS...give that baby a squeeze for me

I sure will sugar her up for you, Marie. Thanks for the laugh about the race car. I laughed even harder picturing me driving and you in the passenger side gripping the door and praying. 

Yes race car would be too much. But it's a good laugh.

Ladyden,

 

I am very impressed with your disciplined way of building up exposure to things.    Steady and sure. Its great that you have been able to get used to the car in a way that kept your sx under control. Breaking tasks down into manageable steps like that is a really clever way of doing things and managing stress. You are a woman on a mission smashing those goals again and again with brilliant results. At this rate you will be driving your family somewhere beautiful for a day out in the not too distance future. Very inspiring.

 

Like Marie I am prone to jump in feet first. It didn’t serve me well on my taper as I did a crazy freefall most of the way down. Ill try my best to learn from it but know I am very prone to impatience. Healing in many ways is more of a challenge for my personality type than tapering when you are actively doing something. I could view the planning as the active part now with execution to follow when symptoms allow.

 

I’ll take your lead and start thinking of how I will break down the steps to a task and plan a reward into it. I know what it will be – getting my hair done. That will really lift my spirits as my hair has gone all horrible, thin and frizzy and I haven’t been to the hairdresser in over 7 months. I look like Worzel Gummidge! There are a lot of steps involved to get there though as agoraphobia has set in too. I may as well start planning the steps so I feel less like I am waiting for a bus the whole time. Step 1. Sitting when dizziness allows.

 

The palps and nausea are back in force today ugh. The window is closing so I am going back to bed. Hopefully a window will come along soon.

 

I hope you have something great to smile about today. Roxy 

Hey Roxy that's a great idea to do your hair. It has an added bonus of making you feel like a human again instead of Gummidge. Lol Girl I died laughing. But for awhile I looked like Edward Scissorhands! So don't feel bad. Yes my hair thinned out and frizzed up too. It has finally stopped falling out in clumps. Many in withdrawal get this same symptom. I guess I need to pull out my old hair tricks to help it along. Good old Mane and Tail conditioner. Awesome stuff! I'm able to paint my own nails again. I'm not brave enough yet to paint my toenails. It's these little things we do that makes our day. You and Marie are right about not having patience. I'm sure you both have learned a valuable lesson as did I when I tried to force my healing to go faster by doing way too much too fast. Being bedridden for so long requires a gradual rehabilitation back to normal. When you have a window you're so tempted to live it up! But take my advice, don't do it or you'll pay with a huge wave that feels like acute starting again. I was so disappointed when I had to get back in the bed most of the day. Thankfully this only lasted less than a week. I mopped floors like a dummy is what did it. Whoever said experience is the best teacher told the truth!

Hi All,

I'm a new BB, you can see my history below.  It is not long, but I quickly became ill and spend my days in bed, a chair, or on my back patio.  I don't know if it is the V., or the C/T from the K. and baclo. that has caused this. The main things that keep me in bed are  1) crushing morning adrenaline rushes that leave me with w/d type shaking and last for 3-4 hours, not relieved by taking my morning dose; 2) depression- really dark, really sad, really hard to feel hope that I will ever find myself out of this mess.  I've never dealt with depression before and it's truly debilitating.

My psychiatrist insisted I make a DT from 10---> mg 4 days ago.  I'm sure that's not helping at all. 

Any positive support would mean so much. Thanks.

Welcome!!!! The good thing is that you've found BBs  There are a number of threads and others who's on your medication that can buddy with you to help you on your journey. Reading the threads will prove to have vital information and support but just be careful to not read any of the "I'm doomed, I'll never heal, I feel hopeless, etc" Right now with you being depressed will not be a good time to read others horror stories/bad experiences with sadness. What you need to do is read positive helpful or success stories. Your depression will fade over time. But until it does my advice is to counteract some of it with positivity. Distract yourself with things you know you have enjoyed in the past. Keep a journal. Write how you feel and then write positive things you're proud of about yourself. Take baby steps. This is NOT a race. Pamper yourself everyday! You deserve a little TLC. You got this!!!! It won't be easy but you're in the right place to get through it. Big hugs to you. You have our support.

 

Hi Lady-

 

Such great advice

 

I like your car ride “plan”....When you were talking about moving to the drivers side, I thought about going to the arcade and driving a race card  :laugh: But that would probably be too much stimulation.  But that’s me...just jump right in.  Just like my disastrous C/O and taper....Look where that got me.  You would think at my age (almost 55...just less than two weeks...yikes) I would have learned this lesson once or twice.

 

I’m so glad you are doing so well....It gives me so much hope for the future.  Both you and Roxy.  The “distractions” and “plans” are such good things to focus on. 

 

Marie

 

PS...give that baby a squeeze for me

I sure will sugar her up for you, Marie. Thanks for the laugh about the race car. I laughed even harder picturing me driving and you in the passenger side gripping the door and praying. 

Yes race car would be too much. But it's a good laugh.

 

Now I am here laughing at the story line of us in a race car.....that actually sounds fun. I am a thrill seeker...and since I am not vibrating at the moment....I’m all in 

 

Yes...Lots of sugar.  My son is getting married as you know, so I think in a few years I will be a grandma too.  I do look forward that...”timing be right”....As long as the other two, don’t have any “accidents”

 

Hope you are getting some practice in behind the wheel today.

 

Marie

Hey Therewouldbenobutterflies, welcome! 

 

I’m sorry that you too are suffering to the point that you are either bedridden or staying home. Its shows just how destructive benzos are that everyone on this thread past and present has found themselves in this position. The good news is that it is temporary. I do hope that you put your bedridden days behind you very soon.

 

The morning adrenaline surges are common. I got them at all times of the day though including in the middle of the night waking me up. They are horrible but remember they will go away. I still have the adrenaline surges but nowhere near as many as I did before I jumped and I am sleeping well now too.

 

Depression is very common too and there is a special board for that which you may have come across. Although I went though some very dark DR driven life review stuff and grieving emotions, depression was not one of my most severe symptoms during most of my taper. I had severe depression that I remember for about 2 weeks in the run up to my jump which has now passed and I am less depressed now that I’m off than I have been in a while.  I am still on ADs which seem to work for me though I want of all psychoactive meds (I'm on pregabalin too) in time. Like all of these symptoms, it is all temporary unless you already had it pre – benzos of course.

 

I hope that you are doing ok today?

Roxy 😊

 

Roxy,

I'm struggling, but I see you are too.  I am so sorry.  This is definitely not for the faint of heart.  I had a window yesterday, but today I feel a lot of panic, and overwhelm about how I will make it through months and months of this.  I wish someone could reassure me that things get better the more you taper, but from reading enough here, I know that's just not always the case.  I'm just at the beginning, so I'm mourning the loss of what I had just a couple months ago. 

I wlll be praying for you and hope your wave passes quickly.  You have come so far!  How has liquid valium done for you?  I'm going to talk to my Dr. about it.  Right now she just wants me cutting 1 mg/month.  That was probably OK going 10-9, but I know long term that won't work. 

Sending love!

 

Butterflies - How are you doing today? 

 

The nice thing about cutting the 1mg a month is, you could make your cuts at .5 every 2 weeks, and that wouldn’t be as hard as a 1mg cut at the beginning of the 4weeks.  Or if you ask about the liquid Valium, you could cut by .01ml every day (this is what I am going to be doing) doing a DLMT, or a hybrid.  I am going to start a hybrid.  I will be doing both pills and liquid but a DMT, instead of the DT ( cut and hold).  I just did a cut and hold again at only .35mg.3.74%, and while the sx were not horrid, they still were worse than when I was doing the DLMT( liquid Valium only) and this is where the journaling really came in handy.  So the advice about journaling is very good advice.  Plus I remembered, because it was very recent.

 

Hopefully things will smooth out for you, and finding distractions will help and also I find meditation and breathing really help a lot.

 

We are here for you 

 

Marie

I just ran across this group tonight.  I have a question....these posts were mostly in 2014 and I am wondering how many of you have recovered to have normal lives again after being bedridden?  I have been bedridden since 2019, so it's been 2 years now.  Do I have any hope?

 

Hi-  I am so sorry you are suffering so badly. 

 

I do believe there is “ALWAYS” hope.  Two ladies right now who are quite active, should give you some hope.  Both Ladyden and Roxy.  Read through their post.  Both are healing and making progress, just since I have joined the thread.  Even myself, while still cutting, have been able to get out of bed/off the couch....now who knows what the future holds, but I am hoping for the best, with a slow and steady wean, as to not fry my CNS.

 

I do see you did two C/T’ off of Klonopin and those are very hard on the CNS.  The healing for each person is very different and the timelines are all over the place.  What is keeping you in bed?  What are your symptoms?  I know you mention Migraines in your signature, is there other sx?

 

Hopefully we can offer you support here 

 

Marie

Marie –

Your poor son has been in the wars lately hasn’t he. Oh dear – that really is a worry. I’m sorry to hear that. The ER is one of the last places anyone wants to end up in. It shows how strong you are right now that this didn’t throw you into a wave. The poor guy will find the crutches tough going with the shoulder. Cripes. I suppose if you are very sporty accidents will happen and its better being out in the fresh air on a skateboard than staying in playing Fortnight and eating junk food. I used to like roller blading and ice skating but could never use a skateboard. They aren’t easy to get the hang of.

 

Good riddance to your vibrating! Yay! Great to hear that you are back to normal after the cut. The DLMT seemed like a lot of hard work to me in terms of faffing around measuring etc. but if you are willing to do all that then it would be smoother yet again than the controlled cuts. I didn’t mind the liquid Valium. It was a nice strawberry taste. I didn’t notice it losing strength. I had my second bottle for ages. Maybe it was weaker – not sure.  As you want to closely control your sx/taper it might be the best for you. I suppose it also takes away a certain element of the stress in deciding when to make the next cut.

 

I get the lack of motivation thing too and it lifts in windows thankfully. It is so not my character to do nothing and it drives me crazy that there are so many things that I could usefully do now that I am spending all this time indoors but I am often either too sick or too fed up to do them. Its not depression – things don’t feel bleak in that way. Its more just meh!

 

Lol the gel light still in the box. Same for my tooth whitening kit!  God knows when I will find the motivation to remove the box. I would like to try the gel nails. My nails are usually naturally strong and long but wrecked with the taper and keep splitting now. The gel would be good for keeping them hard I’d imagine. It sucks when you have to cut them all back after one breaks. My nails look a bit better but I’m not used to them short. Hopefully that and the hair loss are temporary symptoms too.

 

You have a great day too, 

Roxy 

 

Roxy-  I’m concerned that this sprain might be a grade 3...if so, he would have been better off with a brake.  The bruising is horrific.  I have an apt., for him on Monday with an ankle specialist at his Orthopedic Sports place, but my sister saw this particular doctor and didn’t like him, so we will see.  Anyway, I am glad I didn’t get thrown into a wave too....It did increase my vibrating that night.  .  Now he is sitting and gaming and watching TV...lol....Thankfully school is online, and he is really good about his homework.  He is already wanting to go out.  He asked if he could go out with his friends today.  UM NO!!!  I said, maybe tomorrow, if he wears the “boot” and promises to keep his foot elevated.  The first 3 days are very important that it is elevated and iced.  They are all football players, and he really wants to play, so I don’t think he would do anything to jeopardize this healing.  He didn’t fight me at all when I said, no to for today. 

 

I think today I would say is the first day of really feeling the best after this last cut...so like on day 10.  So if I was going to do another dry cut..I would have 4 days of windows, plus the first two days of the cut, and then I would feel like crap for over a week....and if I did the DT, it would be a bigger cut too.  So this is why I am going back to the DLMT.  But I have decided to do a hybrid like “slownsteady” is doing (his is klonopin) and I’m sure others do too; with part liquid and part pills. Since I am still pretty high in my dose, I can do a lot with the pills and micro with the liquid...it should work great.  That way if it does lose any stability, I am covered with the pill’s more.  I think I am going to try and pick it up weekly, and then biweekly....really watch my journaling and symptoms and see if I do see the pattern and then I will know for sure.  Anyways, I won’t start until May 4th. 

 

I’m so glad you said it’s not “depression”...because I don’t feel “depressed”, it’s just this lack of motivation and it definitely passes......I’m glad I am not alone.  I am like you....it’s not in my character either.  I usually love to be busy, or do projects, or just be out and about.  It’s definitely a benzo thing.  It is a “meh thing”.  But when the windows are open....I love moving about.  I am slower as I lost stamina, but I am slowly regaining it.  I have to pace myself...I’m sure you understand that 

 

I’m glad I’m not the only one with unopened boxes of useful beauty products....LOL .  My nails are wrecked too.  They are more brittle....so it must be the benzo thing.  I’m not going to talk about my hair....if I ignore it, maybe it won’t be happening  :wacko:  I do try and take a lot of vitamin C....I hope that is helping some.  We need to go and open our boxes and use our machines 

 

I hope you are up today and enjoying yourself....windows?

 

Marie

 

 

Marie, being a Glamma ( I'm not grandma lol) is a beautiful experience. I'm sure you'll make a great one when the times right. Congrats on your son's upcoming wedding. I hope they will be wise and wait atleast 3 years before having a kid. I say this because I think it's important to enjoy married life first for a couple of years. Go on trips, do fun things, get to know each other better and enjoy being newlyweds. Ohhhhhh most importantly start saving money! I hope they stick by each other's side showing love and devotion to each other for the rest of their lives. May they be happy.

Roxy hope you're doing well. How's the weather? Are you doing much lately?

I didn't try driving yet. But I plan to soon. Yesterday I am 11 months free! 

Marie, being a Glamma ( I'm not grandma lol) is a beautiful experience. I'm sure you'll make a great one when the times right. Congrats on your son's upcoming wedding. I hope they will be wise and wait atleast 3 years before having a kid. I say this because I think it's important to enjoy married life first for a couple of years. Go on trips, do fun things, get to know each other better and enjoy being newlyweds. Ohhhhhh most importantly start saving money! I hope they stick by each other's side showing love and devotion to each other for the rest of their lives. May they be happy.

Roxy hope you're doing well. How's the weather? Are you doing much lately?

I didn't try driving yet. But I plan to soon. Yesterday I am 11 months free! 

 

Hi Lady….

 

Sorry for the late response.  I have been crazy busy.  That is a good thing. Super tired the last couple of days and on the couch right now.

 

I love the “Glamma”….that will be me too….   Yes, they are waiting.  Thank goodness.  I agree.  My ex and I waited 5 years and had all kinds of fun…. They want to have fun and save for a house first.  So I hope they can do that.

 

My son is healing and will start PT in two weeks for his ankle and we won’t know if he will need surgery for a couple of months. UGH.  Good news: He didn’t have a labrum injury in his shoulder, but has a PT apt at 7:00AM in the morning for that….good grief!  LOL.

 

I hope all is well with you, and you are getting ready to drive! Congratulations on the mile stone too 

 

Marie

Marie – 6 hours sleep was a very good night on my taper. You are keeping things stable.

 

I had a lot of zero nights and 1-2 hours. Getting this poison out of the system has definitely helped my sleep. Your normal sleep will return when you are off. I seem to be on sleep catch up at the minute. Another 10hrs last night (8 ½ hours, loo, 1 ½ hours). This is my fifth sleep 9+hrs since I jumped. I just wish the DR would disappear too. I didn’t even know that’s what it was called until I read about it on here. I hope that your vibrating has gone now? I don’t have that too bad (just a bit recently), its more the seeing the world through an abstract lens/ feeling like my surroundings are a film set thing that stumps me.

 

Hows the cut going? I hope you are still feeling good today on night 8? Symptom based is the way every time. I found an interesting post on Gardeners Prog that made a lot of sense to me on the subject. I don’t know how to do links yet so have copied it below in case you haven’t seen it.

 

That’s good advice to get an RV with a generator from an independent vendor for my future holiday. Its something to really look forward to. I’m no good at temperature fluctuations now if I lost power and the big companies were on the pricey side last time I checked.

 

I am up and on the couch enjoying the day 😊 I hope you are having a good day too? That is five days in a row that I have got out of bed for a while. It’s a huge change after months on end bedridden full time with just a few hours on the couch in the week. Being off is making a big difference that I really wasn’t expecting any time soon.

 

Roxy 

 

Gardener99 Prog

Damage and Healing (quoted from SG)

 

I've come to learn that this is not about getting to zero.  It is about always feeling well.  It is not drug withdrawal, it is managing receptor function.  It is about keeping receptors functioning normally at all times so the GABA and glutamate systems do not incur further damage, while coaxing the body to add new GABA receptors.  Your doctor looks at it as drug withdrawal and dependence.  I try to never even use those words anymore.  If an up dose is needed, I'd do it….

 

There seem to be two types of damage.  One is GABA down-regulation - everyone who experiences symptoms has this.  The drug has caused you to have fewer GABA receptors.  This is the basic problem common to everyone here, and a careful taper can restore them.

 

The second type of damage is from being too short of benzo.  It happens when you short yourself so much that the neuron can no longer handle it.  I don't fully understand what happens, but the end result is thought to be a long-term problem in the glutamate system.  This damage is avoidable and it should be the aim of all tapers to do just that.  I'd say 95% of the people here do not manage to avoid this type of damage (including me) and they get stuck with long-lasting symptoms during and after the taper.  This is a shame as it does not have to happen.

 

Roxy-  I am so happy you are up more...That is fantastic.  Maybe just getting off was the best thing to do!! 

 

Oh the sleep you are getting....How lovely!  I can only dream that one day, I will sleep just 8 hours again.  This past week I have only been getting between 4-6 hours.  It’s the “cut”.  Early on in my C/O K to V disaster and then cutting for a while I would only get 2 hours and then maybe another 2 if I was lucky.....finally that started to increase to about 5 and then 6... I think that was around late Jan and early February ?  Anyway...as long as I am “sleeping”  .  But you enjoy every second of your splendid well deserved slumber 

 

My vibrating is finally gone today...ugh I just hate the vibrating.  Everyone is going to think I am nuts, but I don’t know if the DT is going to workout...LOL.  I am going to wait 3 weeks, stabilize really well, try one more time with a 5.5% cut and see how it goes and then make a decision.  But with my very precise journaling and memory, as much as I thought I didn’t like the DLMT (and the liquid compound Valium ) I think maybe it was better.  Here is why.  So why I did have some vibrating and some sx, with this cut...I still had some sx, but worse vibrating ( still functioning if “need” be) and ended up with a couple of headaches, “but” I noticed I started to lack motivation.....that did not happen while doing the DLMT.  I also felt that the compounded Valium was loosing it’s strength in the second week (increased vibrating) and talked with pharmacist about that too.  So I could just get a new bottle each week.  Anyway....I will figure it out.  I just don’t like how for a couple days, I lost the motivation to want to do things.  Today is much better and I am feeling back to normal 

 

I like Gardner’s Prog.  That is a great post.  Thank you and that is such great information and makes a lot of sense.  I plan on going slow.  I did just about 10% with the DLMT and that is what I am shooting for with the DT too.  Just trying to keep sx to a minimum. 

 

I saw your post to LD and about your nails.  Me too....I use to get my nails done all the time....and I have once painted them since COVID and not getting them done.  I even bought a Gel light and Gel polish to do them, and the Gel light is still in the box on my counter and the polish in the wrapper...lol.  You have inspired me to get it done...lol.  I will have to wait a couple of days, I just broke my middle finger nail last night.  Now I have to cut them all down.    I hope your nails look beautiful after a nice paint job 

 

So yesterday afternoon my youngest son (the football ‘lacrosse player) ended up in the ER from a skateboarding accident.  Thankfully he was with my oldest son, so I met them at the ER.  He landed on his ankle/foot, and thankfully it isn’t broken, but is badly sprained ( could have ligament damage) so he is in a walking boot and crutches.  We now have to follow up with his orthopedic sports surgeon...ugh.  He already has and MRI scheduled tomorrow for his shoulder and one on Monday for his hand/thumb....oh my.  The thing is...I had a “feeling” when he left the house.  :'(. Thankfully it wasn’t worse.  I don’t like  that he likes to skateboard.  All my kids do...even my daughter.    But they have to live their lives 

 

Well I hope you are having a wonderful day

 

Marie

 

Hey Roxy-

 

Just checking on you….hope you are doing okay 

 

Marie

Marie, being a Glamma ( I'm not grandma lol) is a beautiful experience. I'm sure you'll make a great one when the times right. Congrats on your son's upcoming wedding. I hope they will be wise and wait atleast 3 years before having a kid. I say this because I think it's important to enjoy married life first for a couple of years. Go on trips, do fun things, get to know each other better and enjoy being newlyweds. Ohhhhhh most importantly start saving money! I hope they stick by each other's side showing love and devotion to each other for the rest of their lives. May they be happy.

Roxy hope you're doing well. How's the weather? Are you doing much lately?

I didn't try driving yet. But I plan to soon. Yesterday I am 11 months free! 

Yes I'm working on my endurance as we speak so I can take my first drive. One year is coming up for me in June. I'm making that be my first driving day. I've missed u. Glad u r back posting. Hope ur son heals nicely. Big hugs

 

Hi Lady….

 

Sorry for the late response.  I have been crazy busy.  That is a good thing. Super tired the last couple of days and on the couch right now.

 

I love the “Glamma”….that will be me too….   Yes, they are waiting.  Thank goodness.  I agree.  My ex and I waited 5 years and had all kinds of fun…. They want to have fun and save for a house first.  So I hope they can do that.

 

My son is healing and will start PT in two weeks for his ankle and we won’t know if he will need surgery for a couple of months. UGH.  Good news: He didn’t have a labrum injury in his shoulder, but has a PT apt at 7:00AM in the morning for that….good grief!  LOL.

 

I hope all is well with you, and you are getting ready to drive! Congratulations on the mile stone too 

 

Marie

Hi hope u r doing ok Roxy? Miss u

Hey Therewouldbenobutterflies, welcome! 

 

I’m sorry that you too are suffering to the point that you are either bedridden or staying home. Its shows just how destructive benzos are that everyone on this thread past and present has found themselves in this position. The good news is that it is temporary. I do hope that you put your bedridden days behind you very soon.

 

The morning adrenaline surges are common. I got them at all times of the day though including in the middle of the night waking me up. They are horrible but remember they will go away. I still have the adrenaline surges but nowhere near as many as I did before I jumped and I am sleeping well now too.

 

Depression is very common too and there is a special board for that which you may have come across. Although I went though some very dark DR driven life review stuff and grieving emotions, depression was not one of my most severe symptoms during most of my taper. I had severe depression that I remember for about 2 weeks in the run up to my jump which has now passed and I am less depressed now that I’m off than I have been in a while.  I am still on ADs which seem to work for me though I want of all psychoactive meds (I'm on pregabalin too) in time. Like all of these symptoms, it is all temporary unless you already had it pre – benzos of course.

 

I hope that you are doing ok today?

Roxy 😊

 

Hi Roxy I am coming here for support. Bed bound after a micro increase has left me with extreme fatigue weakness and anxiety. A major crash to the nervous system. Did your long hold at 1mg help you to get out of the worst of it? I am hit with all systems breaking down and trying to stay positive.

Hi friends….. Just was checking in.  Life has been moving along in slow motion, but moving.  I am still tapering ( at one point I thought I would be off of this stuff by now… ha ha!).  I wish I could go faster but I just can’t…. My body says NO WAY! 

 

Anyway, I hope life is treating you well

 

Marie

Hugs Marie!!! I’ve been wondering about you and Roxie. Y’all disappeared. How are you doing? Have you hit a wall?

Still bed bound for the most part and would love to hear from others who are and how they are coping. I have so much h pain burning and heaviness that causes a panic because it’s hard to even lift my head.

Hi Fruity. Sorry to hear you’re in this club too. Yes I’m still bedridden most of the day unfortunately. Here’s a typical day for me just to show you why I said “ most of the day”. I wake about 6:45 - 7am after sleeping about 6 hours. Most nights this isn’t solid straight through sleeping because I wake up once or twice usually around 3-4 am but I’m able to go back to sleep quickly. From 7am to about 1pm I have morning dread then waves at varying degrees. Around 1pm I began going into my evening window gradually. By 4-5pm my window is good enough to get up to walk around without a walker. This is when I take brief strolls around my apartment indoors. Around 6pm my window began closing and my regular symptoms of boatiness, ear ringing, intolerance to standing, imbalance and head symptoms steadily increase with each hour. Also during this time I have small visits of other symptoms pop in and out in mild degrees. Such as sneezing, muscle tightness, ears popping, muscle twitches, visual disturbances, feeling of low blood sugar, tight belly and a few other weird annoyances. By 10:30-11pm I go to sleep in a wave of the head symptoms and pretty noticeable boatiness. About once a week I also wake with an awful headache that last 24 hours. It’s sinus like but without anything wrong with my sinuses. Also once a week I have a big wave. This wave feels like I’m going to have a stroke. Also at random every few weeks I have a seizure like episode of sudden severe vertigo and loss of body control of my muscles such as can’t hold up my own body weight. This is why I’m bedridden. These take me awhile to bounce back from to be able to tolerate standing up again or walk around.

How do I cope?

I breathe through each wave with slow controlled breaths about 3 at a time then breathe normal a few minutes then repeat. This can be done while meditating for maximum effect. I use YouTube soothing relaxation channel. I pick something like raining in a forest, a spa, beach, waterfall, etc and I pretend I’m right there with eyes closed. Or you can choose classical lullabies for babies while cuddling a teddy bear, pillow or blanket and just pretend to be a calm baby. I know that sounds nuts but it works for me and if done at bedtime it could put you to sleep. The boatiness at night I pretend like I’m a baby being rocked to sleep. You know why? It’s much better to not fight our symptoms. During the day I use online games ( cardgames.io), non-stimulating movies, Netflix series, the positive threads here on BB and talking on the phone to distract me. I also use YouTube to go places. Now I know you really think I’m nuts!  But, I choose a country and YouTube has the virtual landmarks of those places that’s been recorded live. Also videos of their culture, food, language, way of life etc. you could choose a different country every week. 

There’s also live feeds of zoos, aquariums, museums, parks etc

Also while you’re in bed you can do exercises.

I hope this helps you. I’m wishing you, me and everyone stuck in bed that well be back to being upright very soon. I’ve gotten out of this bed before and I will again. So will you. Hang in there. I’m happy to answer any questions you have to the best of my ability. I’ve been in this bedridden club a longgggg time.

Still bed bound for the most part and would love to hear from others who are and how they are coping. I have so much h pain burning and heaviness that causes a panic because it’s hard to even lift my head.

 

Hi Fruity -  So sorry that you are bed bound, it really sucks. I am couch bound a lot of the time and I just so want my life back.  I’m back at my taper (been on and off, had to do some holds for family reasons) and every single time….every single time…I feel it.  I am only doing ~10% per month and I FEEL every bit of it :-[ . I too have pain and burning.  My face feels like it is sun burned half of the time.  I have a lot of muscle and joint pain, tinnitus, and I am just super weak.  Everything is an effort and seems overwhelming.  Unless I get a window.  But then, I am pretty weak, so it’s this vicious cycle….you probably understand.  Try to breathe like Lady said.  It really helps.  Box breathing really works for me. I realize the panic will only make things worse and these things are only my body healing…..When I was really really bad….I felt like I had tooth infections, and I remember reading about other’s having phantom tooth pain.  Anyway, so much goes on as our central nervous system is healing.  We also have the gaba receptors in our gut, so we can have a lot of problems there too.  Just try and do the best you can do, and just know that at some point this will all be over and we will be healed 

 

Marie

Hugs Marie!!! I’ve been wondering about you and Roxie. Y’all disappeared. How are you doing? Have you hit a wall?

 

Hi Lady -  I often thought about you too and Roxie….well everyone.  I didn’t hit a wall, I did do some holds.  My son got married, my youngest had /has football, my Partner’s mother needed me, and then she passed away in September….So I had a lot going on.  Plus I just needed to take a break from the boards.  I’m still trucking.  I am at 5.7mg -V and I am doing ~10% this month and feeling every bit of it.  I’m on the couch a lot.  I shared where I’m at with Fruty.  You gave her great advice too.  I love the idea of traveling on YouTube.   

 

I’m sorry you are still struggling so much.  I do hope soon you will have wide open windows and this will all be behind you.  I know it can take a long time for our brains/CNS/ bodies to recover from all the rewiring and all the days “down” we spent too.  I am confident that it is doable and that your day and mine, and our bb buddies are coming.  One at a time, we soldier on.

 

I told my doctor that I wanted it to be TODAY!!  :laugh:   I am out of patience   And I haven’t even jumped :D.  Oh brother, I really have to get back in the “moment” 

 

Ok…well I will try and check in soon…..take care 

 

Marie

Hi Fruity. Sorry to hear you’re in this club too. Yes I’m still bedridden most of the day unfortunately. Here’s a typical day for me just to show you why I said “ most of the day”. I wake about 6:45 - 7am after sleeping about 6 hours. Most nights this isn’t solid straight through sleeping because I wake up once or twice usually around 3-4 am but I’m able to go back to sleep quickly. From 7am to about 1pm I have morning dread then waves at varying degrees. Around 1pm I began going into my evening window gradually. By 4-5pm my window is good enough to get up to walk around without a walker. This is when I take brief strolls around my apartment indoors. Around 6pm my window began closing and my regular symptoms of boatiness, ear ringing, intolerance to standing, imbalance and head symptoms steadily increase with each hour. Also during this time I have small visits of other symptoms pop in and out in mild degrees. Such as sneezing, muscle tightness, ears popping, muscle twitches, visual disturbances, feeling of low blood sugar, tight belly and a few other weird annoyances. By 10:30-11pm I go to sleep in a wave of the head symptoms and pretty noticeable boatiness. About once a week I also wake with an awful headache that last 24 hours. It’s sinus like but without anything wrong with my sinuses. Also once a week I have a big wave. This wave feels like I’m going to have a stroke. Also at random every few weeks I have a seizure like episode of sudden severe vertigo and loss of body control of my muscles such as can’t hold up my own body weight. This is why I’m bedridden. These take me awhile to bounce back from to be able to tolerate standing up again or walk around.

How do I cope?

I breathe through each wave with slow controlled breaths about 3 at a time then breathe normal a few minutes then repeat. This can be done while meditating for maximum effect. I use YouTube soothing relaxation channel. I pick something like raining in a forest, a spa, beach, waterfall, etc and I pretend I’m right there with eyes closed. Or you can choose classical lullabies for babies while cuddling a teddy bear, pillow or blanket and just pretend to be a calm baby. I know that sounds nuts but it works for me and if done at bedtime it could put you to sleep. The boatiness at night I pretend like I’m a baby being rocked to sleep. You know why? It’s much better to not fight our symptoms. During the day I use online games ( cardgames.io), non-stimulating movies, Netflix series, the positive threads here on BB and talking on the phone to distract me. I also use YouTube to go places. Now I know you really think I’m nuts!  But, I choose a country and YouTube has the virtual landmarks of those places that’s been recorded live. Also videos of their culture, food, language, way of life etc. you could choose a different country every week. 

There’s also live feeds of zoos, aquariums, museums, parks etc

Also while you’re in bed you can do exercises.

I hope this helps you. I’m wishing you, me and everyone stuck in bed that well be back to being upright very soon. I’ve gotten out of this bed before and I will again. So will you. Hang in there. I’m happy to answer any questions you have to the best of my ability. I’ve been in this bedridden club a longgggg time.

 

I am so sorry you are struggling but I will have to say I have taken some comfort in your words because my day goes very similar to your with almost every symptom except seizure strike type stuff but the timeline of the day is very similar. Things start to cool a little around 2pm for me instead of 1pm though and then around 5pm things start to close and get more intense for the evening. I so appreciate everything you typed about coping. I have taken a screen shot and will refer to tomorrow when I am panicking. I usually cry and call someone but talking is stressful for me too so it’s hard. I need to be better about breathing through it. I do good with coping for a day and then back to panicking about it all the next. I have pots and such an extreme heaviness in my body that it is very hard to be upright. I feel like cement pulling me down very heavy very painful. I explain it like my bones feel broken. The low blood sugar feelings really get me so I eat and then the food makes my heart races and I get hot flashes then 2-3 hours later my blood sugar drops again and it cycles like that all day. Most of the time my husband is bringing my meals into me in bed and we are looking at hiring a care giver for the days he is in the office. I feel such despair every day about when this will get better.

Thank you for commenting I don’t feel so alone.