Too much!!!

Okay, I am serious. I think I have bitten off more than I can chew. I am 6 months out. I have not had any more than 1-3 hours sleep in the last 6 months.

 

My blood sugar is steadily rising. My tinnitus is screaming. Increasing every day. My anxiety is at panic levels again. I had a break down in Costco today. Thank God my sister could guide me out of there. I started hallucinating. That’s a new one. I was supposed to get blood drawn this morning but was so weak my sister had to spoon feed me food so that I could even walk.

 

At what point does this get better? I don’t see it. Is the cure worse than the drug? I need a break. I want off. Can I just start taking Ativan again? I no longer care about getting off  I have been strong. I swear I can’t take another day. Please God!!!

 

My doctor wants me to reinstate NOW with Librium. Or she will no longer see me or treat me. But she cannot guarantee me it will work. What then. She says I am a very unusual case. Really? I see so many here suffering. If I can’t sleep how do I live? Seriously!! 😱😱😱😱😱😱

I would not restate. I had all of that and more to deal with. It takes time and more time. Do not give up it can take years but it is worth it. Find things you can tolerate  and it may not be much. The less stress you allow into your life the easier it will be. I could not handle any. I would almost run from stores. I am a take charge person and now I am a total mess and wondered would it ever end but it does. Old movies, rocking chairs, walking, crafts, aqua sports. Reading and talking are to hard for your fractured brain now!

Oh, I remember feeling exactly as you feel at six months.  I had a much longer benzo history and a lot of kindling.  You will start to feel better.  For me it was so incremental that I could not notice it.  I did not have windows and waves -- just one long wave.  However, I did notice that I would start to feel a little better at night.  And then in the afternoon.

 

When I could do nothing much, I walked every day, drank a lot of water, stayed close to Benzo buddies and went to recovery meetings just to be around people...I also went to the grocery stores but going in a Walmart, etc was traumatic.

 

If you reinstate there is a fifty percent chance it will not work, per Baylissa.  I could not live with those odds so I did not reinstate.  It sounds like your doctors need some education.  I promise you that you are not an outlier!!

 

Now I can do a lot more.  I am still anxious but it doesn't prevent me from doing things -- movies, concerts, dinners, day trips, working part time.  I learned to be patient from this ordeal.

 

Carol

I appreciate your responses.

 

I realize you are trying to be supportive and encouraging. But when you tell me it’s going to take years when I can’t go one more day well, it takes away any hope I have that this may end soon.

 

Are either one of you healed? Or are you still struggling and just accepting the new damaged you?

 

I don’t mean this to sound ungrateful or mean. It’s just that’s my point. If our lives are worse off the Benzos, what is the point of all this?

 

What? We can say okay, we are damaged, we have raging tinnitus,cant have regular sleep, can’t drink coffee, can’t have any medical procedures without a setback, cant get vaccines without setback, can’t get sick without a return of symptoms, can’t be in stressful situations, can’t exercise, can’t eat foods that I love, cant take supplements, can’t drink alcohol, can’t smoke weed. But, I’m off Benzos. I made it through.

 

Sorry, but that’s what is sounds like. If all that’s true, I have to have continual medical procedures ongoing. If Anesthesia and procedures bring on a return of symptoms, I am doomed to years of never ending symptoms.

 

I thought we all healed. But, I don’t see that here that much. I see kinda healed. I see thought I was healed but had to have a procedure and now back in hell. I long to see a CT success story that says all is good again. 100% back to normal. If that can’t happen and one cant accept that, is it possible to just go back on and stay on? I mean it’s a radical choice, I know but is it an option? Or is that choice no longer available either?

 

I am not just ranting. This is a serious question and predicament for me. Any constructive input would be appreciated.

 

Thanks!!

I just posted this to someone else.  Maybe it will help a little:

 

If you read my signature, I was on and off benzodiazepines for 30+ years. Today, at 67 years old, my life is normal and good again. For a long time I could barely force myself to get off the couch, go out of the house, drive a car or, God forbid, socialize.  These things returned bit by bit and got easier and easier as time went by.

 

It will happen for you this way, too.  I know it’s scary right now, I was also scared...first scared for my body, then scared for my mind.  But our bodies and minds know how to heal, we just have to give them time.

 

Acceptance was key for me. 

That’s my best advice to you.

 

As to insomnia, which is indeed a huge issue for many of us in the first months, I would consider something like hydroxyzine (there may be other adjunct meds that help with sleep, maybe Remeron) rather than reinstate a benzodiazepine and lose the healing time and risk kindling.

 

I didn’t take anything for sleep because I was retired and could slog through the exhaustion, so this isn’t personal experience, it’s relaying what I’ve read on the forum from other people who struggled with insomnia and got some relief with less impactful drugs.

 

To begin to turn insomnia around, I slept alone in a cool dark room with ocean waves playing on my phone. I went from zero sleep to 20 minutes to two hours, three hours, four hours and it just kept increasing with time.

 

It’s horribly frustrating.  I cried a river during those months.

 

Challis99...thank you. I could take all the rest of this IF I could sleep. I have not slept more than 1-3 hours in 6 months and I find this the most cruel of punishments nothing I have been given so far helps. Hydroxine, Remeron and Trazadone make me sick. Unisom is no longer working. How about Gabapentin? Could that help at al?

Challis99...thank you. I could take all the rest of this IF I could sleep. I have not slept more than 1-3 hours in 6 months and I find this the most cruel of punishments nothing I have been given so far helps. Hydroxine, Remeron and Trazadone make me sick. Unisom is no longer working. How about Gabapentin? Could that help at al?

 

Gosh, I really don’t know.  But I’d ask in Other Medications or check the Insomnia board to see if there’s any info there.

 

I drank lots of chamomile tea.  I know it binds to the GABAa receptors but maybe that’s why it can help. ‘Binding’ doesn’t necessarily mean ‘damages’, although maybe someone can prove that theory wrong.

 

Tart cherry is also a possible natural remedy, as is CBD.

 

 

I am back because I just got my 2 hours sleep. Yep, that’s after my luxurious 40 minutes yesterday.

 

So, I have read to reinstate only in a life threatening situation. When your doctor tells you to reinstate because your health is at risk do you listen? Is it possible someone  can be damaged and unable to come back from this? Please someone tell me how I do this without any sleep. Do I go on when I am being told I am looking at diabetes, kidney failure and return of cancer. That’s what my doctor said.

 

Do I ignore?  Do I have a choice? I have read here and been told by others that one will not die from lack of sleep. Well?  Here I am being told I will by my doctor.

So sorry it's so rough going. Can tell by how your story reads that it is exceedingly difficult for you. I cannot imagine having the hallucinations - would really be frightening. I don't think it's constructive to come at you with exceptionally long time frames and personal comparisons. It's not a no-holds-barred, competition. Of course there are common symptoms such as insomnia and anxiety for ex. but everyone is different - as to what symptoms occur, intensity or tolerance levels, duration or windows towards recovery - too many variable to predict. Except that, whilst the brain, given time to heal, recovery is assured - or so I'm told! I'm at 21 mo. and have yet to see windows - in fact the depression is on an upswing for some odd reason - who knows, but it can be devastating and my self esteem just takes a nose dive. But that's just my particular case. Seems the insomnia was much the same as yours, then steadily normalized on into about 10 mo. but has yet to get back to 8 hrs. +/- and hour. I did attempt a cold turkey and only lasted 3 weeks before I caved. I know my own tolerance level and I knew that when I later got off - rapid detox, I'd never go back. Not sure how but I could say with certainty, reinstating would not be an option. Perhaps having OD'd and coming so close to the edge, played a key role in it - can't really say. But, I have no doubt you have to want to do it - more than not. When people advise to avoid stress - follow it!! Stress seems to instantly bring about certain symptoms and it's really tough to lower the stress level again. For me, may take another whole day to recover that. No doubt, for anyone, it's rough as only ones having gone through it can say. Hope support is accessible to you and conditions are conducive to minimal stress mood enhancement. Peace out . . .

I didn’t sleep for over a year when I first got I’ll with ME/CFS. I ended up in hospital after not having slept at all for weeks. Even sedation didn’t work because the virus had done something to my brain.

 

It is absolute hell but try to keep in mind that it won’t kill you. It made me a zombie - never fully awake and never asleep. I used to lucid dream half the time.

 

Coming off diazepam sent me back there - sometimes I found phenergan helpful. Have you tried that?

 

Also, and I know this doesn’t help the exhaustion, there is evidence that worrying about lack of sleep is more harmful than the lack of sleep.

 

https://www.medicalnewstoday.com/articles/320025.php

 

Maybe you could read some books about it

 

https://www.theguardian.com/lifeandstyle/2012/sep/22/dreamland-insomnia-sleep-cbt-drugs

 

When I can’t sleep I listen to audio books because I’m in too much pain to get up and sit etc but the general advice seems to be to get up and do something relaxing. Not sure that applies to withdrawal induced insomnia.

 

 

Okay, thanks but still my question is...can I go back on Benzos to reverse the sleep issue?

Okay, thanks but still my question is...can I go back on Benzos to reverse the sleep issue?

 

At the end of the day, this is your personal choice. As for me I will die before going back.

Okay, thanks but still my question is...can I go back on Benzos to reverse the sleep issue?

 

I'm so sorry you are suffering Su2b10.

 

Of course you can go back on the benzo in an ATTEMPT to reverse the sleep issue.  There's no guarantee it will work however.  It may not work at all.  It may work temporarily until tolerance and interdose withdrawal sets in again.  This is entirely your choice and chance to take, all we can do is offer our own experiences for you to consider.

 

I reinstated once and consider it the biggest mistake I've made during this entire benzo journey.  Tolerance and interdose withdrawals set in so fast it made my head spin.  When you think your suffering can't get any worse, trust me, it can.  My second time around was so much worse in every way. 

 

IMO, the way out is going through acute, staying off all meds, and allowing the brain and nervous system to heal.  And it WILL heal given enough time and the absence of the very medications that caused the problems in the first place.  I went from where you are right now to being almost fully healed.  I am back to my old self, enjoying life to the fullest.  You can get there too, but no one is fooled that it will in any way be easy.

 

I am also appalled at your doctor who is attempting to force you back on a benzo by threatening to cut off medical care and supervision. 

 

Whatever you choose to do Su2B10, I wish you well and hope you can find relief and healing very soon.

 

She

She...so are you healed now? Do you sleep? I took two Remeron last night and still couldn’t sleep. In my looped out state I attacked my husband and he started to call 911 to have me taken away. He said I had to take something to sleep or I was going to the loony bin.

 

I can’t live like this anymore. I took .25 Ativan and I fell asleep. So, am I screwed now? I just need sleep so badly and nothing and I mean nothing is bringing it back. I am starting to think I have traumatic brain injury from the CT.

 

This has become life threatening to me. What else can I do?

Hi again Su2b10,

 

IMO, the only good time to consider reinstating a benzo is when the situation truly has become life threatening.  If that is the case for you, then certainly you have to make a decision.  Only you can know if your situation has reached that point.  We can relate our own experiences, we can encourage and support suffering people, we can give our opinion, but there are limits to what the forum can really do when the situation deteriorates.  At some point, help and support in real life is essential.  Sounds like that is where you are right now. 

 

In answer to your specific questions, yes I am now healed.  I sleep well 7-8 hours of sleep each night.  In the beginning, I did suffer from insomnia, but that gradually improved over time.

 

Again, only you can know what is best for you.  No one here is going to judge you if you decide reinstating is the way to go.

 

She

Su2b10 made another good point.  What about those of us that have pre-existing conditions that may be affected by benzo w/d?

 

In my case, I have asthma and allergies.  I sometimes have to take an inhaled steriod for the asthma and more antihistimines for allergies.  All these meds can ramp up your w/d symptoms.  I've always had to take more medications for asthma and allergies than most people.  In addition, I'm prone to respiratory infections more than the average person, requiring more antibiotics.

 

In addition, I may now have a prostate problem that may require medical treatments.

 

So, is there any hope?  I've been very fearful of becoming sick with a cold or exposing myself to allergens.  Will I have have setbacks the rest of my life every time I take steroids and other medications? 

 

I feel that as bad as the benzo w/d is, it can be much much worse for people with pre-existing conditions that may require the use of additional medications.  For me, this seems like it has just turned from being a 3-year sentence into a death sentence.

 

A single "rescue" pill might help breaking a long cycle of insomnia. It has happened to people here. You may want to try to do that instead of reinstating, at least as a first step, and see what happens.

 

 

 

A single "rescue" pill might help breaking a long cycle of insomnia. It has happened to people here. You may want to try to do that instead of reinstating, at least as a first step, and see what happens.

 

I'm no expert, but if I were in your shoes, I would try herbal remedies, melatonin, and/or an Alpha-Stim device first to attempt to help sleep.  If none of those worked, then the above quoted before resorting to reinstating fully, but that's me.  I've never reinstated myself, would never consider reinstating, but do not judge those who do/have and can understand why some do.  My heart goes out to you in your extreme suffering. 

 

Su2b10 does raise some very good points.  It seems like nervous system sensitivity will always be an issue for some of us.  I’ve had to have surgery...no option and things were setback in a terrible way.  My system is super super sensitive.  I can take a speck, literally a speck of remeron and it knocks me

Out, I’m loopy and agitated for hours.  Everything is intensified in my system.  Everything is amplified to 10000.  I can’t live like this.

It’s horrible, I can’t eat ANYTHING without my brain freaking out.  Total chaos.  I fought so hard to do the things I thought would be enhancing my quality of life by getting me off the Benzo only to have a much worse quality of life.  I can’t go shopping, I can’t drive, I can’t talk to my friends on the phone, can’t interact with those I love,  I don’t feel LOVE and we all thrive on LOVE.  Speaking for myself the trade off hasn’t been worth it.  Maybe I made mistakes in this process.  Maybe I’m doing something wrong now, I don’t know.  My journey has been off the charts.  I NEED to believe we do get better, ALL of us NEED to believe that we do get better.  For me, and I’m only speaking for myself and my experience it has not had the benefit that I had hoped.  I feel like I’m running to stand still.

 

 

P.S.  Probably sounds like a lame suggestion given the severity of your insomnia, but hot epsom salt baths before bedtime with LOTS of epsom salt (minimum 4-5 cups, I often use more).  Relaxing and calming remedy, though I bet you need much more help than just this, so maybe just in addition to other things to try.  I suffer from recurrent bladder infections and must avoid baths in general, but think I'm okay with these baths.  I'm thinking the "salts" may be antibacterial, but not sure.  I actually shower first before the baths because of bladder infection concerns (which many women may be able to relate to here).  If you search this remedy online, you'll see I'm not alone with this remedy.

 

 

SoFightingForMe...you make my point exactly. And how you are living now is how I believe I was heading.

 

Granted, if I had the chance to go back and never take a Benzo I would take that option. But that ship has left the harbor. 

 

I see you were on Ativan as well, I know everyone here thinks I am crazy about this but I believe Ativan is particularly hard on the CNS and MUCH more difficult to get off. No on should ever attempt a CT of Ativan. I think going back up on even 3-4 months off would be better than continuing CT with Ativan.

 

I think (just my opinion) that when you stay in acute so long,  over 6 months, it is extreme damaging in your CNS. I mean, people say the pain is healing. No, it’s damage. Tinnitus is not healing, it is damage. And not sleeping past 6 months starts to be very damaging also. If you are lucky enough to start seeing some relief around 5 6 months and sleep return, I think you get a good success with small enough CNS damage to make a full recovery.

 

If you continue with acute symptoms past 6 months with no sleep, I think you do a lot of CNS damage. And your outcome is worse. You most likely are left with a very damaged hypersensitive CNS system that may recover in 5 10 years or may never.

 

And CT is so much different from tapering. And different Benzos have different effects. I still believe Ativan affects the sleep architecture more severely than other Benzos. I have no scientific evidence to base this on just observation. I believe sleep is important in CNS stabilization and healing. If you are not getting sleep so far out you are adding fuel to a smoldering Fire. That’s why some symptoms just keep intensifying.

 

Anyway, if you are left with a desensitized unstable CNS enjoying any quality of life is nearly impossible. I know Benzos are not the best option  longterm but sometimes quality  versus quantity of life decisions have to be made.

 

It actually took me 5 weeks from my last dose to go into acute. So when I asked advice about reinstatement it was answered straight out of the Ashton Manual. If you are off more than a couple weeks do not reinstate. Well, I had not been in acute 5 weeks  just that was time from my last dose. I still had not derailed my CNS. And I think ( in my opinion) that makes a difference.

 

See every 5 weeks was about how I dosed my as needed. And I think that’s what my particular brain had become used to. So, it didn’t revolt until past that point. Anyway, that was not taken into consideration nor was the participation Benzo I WD on taken into consideration. I only mention these things because I think they are important pieces in some very individual puzzles.

 

I can only hope I can ease and soothe my CNS back out of this. I may have to stay on Benzos a long time. At least until I get through some procedures and surgeries I need.

 

I realize now in hindsight that getting off a Benzo is a very delicate process that you really need to go into with a firm battle plan and the time to devote to it. But I also don’t think we should encourage pushing through when for some that is just going to place them in a point of no return.

 

Not EVERYONE heals. It’s just not true. Perhaps we all heal just not all 100% and if you are left with an amount of healing that is not a good enough quality off life for you than why not reinstate and even stay on if you can.

 

 

If you continue with acute symptoms past 6 months with no sleep, I think you do a lot of CNS damage. And your outcome is worse. You most likely are left with a very damaged hypersensitive CNS system that may recover in 5 10 years or may never.

 

 

Su2b,

 

There has been people here who healed completely at 12, 18, and 24 months off, and were struggling with insomnia and other symptoms even in the last months. So, I don't think what you're saying is true.

 

I'm convinced everyone heals. What I admit, though, is that the journey is not for all. Not everyone can endure so much. We have different levels of patience, endurance, etc. And we come from different situations (marriages, family, jobs, etc).

 

You need to think carefully your decision, and once taken, be at peace with it.

CuriousGUY,

 

Are you healed?

 

I'm not. I'm suffering right now. I do not expect to be healed before the end of the second year, to be honest.

 

The only thing that consoles me is that I'm approaching the end of the first year. I wish days were shorter.