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Back again after 5 years off - worse than acute - could it be related??


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Hello! I'm hoping someone can PLEASE help or connect me with a member or moderator who might help!

I haven't been on this site in years.  I  had horrendous and protracted withdrawals from Xanax, Klonopin, Gabapentin and Remeron.  I was cold turkey'ed many times, out on, off, etc etc.  I nearly lost my life.  Anyway, I was finally off all of everything and slowly recovering.  I was able to work part time - sleep between 5-8 hrs a night without  a blood sugar crash (regularly) - I also have severe hypoglycemia and adrenal issues from all of this - and could exercise a decent amount.  This was back in Feb.  I still had issues but was perhaps 65% recovered.  But then I started getting stomach issues that the doctors could not figure out.  It was severe.  I would go from pain, to acid, etc and my nervous system would kick in to try to numb the pain.  Drs tried natural remedies bc I'm still super sensitive to meds but nothing helped.  I started losing function and so much weight we had to try PPIs etc but they too did not work.  I felt like I was back to being in acute withdrawal.  My exact symptoms were back.  One of my natural drs recognized it and said since my nervous system never fully recovered that is probably why this is happening.  I have also been SEVERELY isolated, super stressed because I can't work, have NO SUPPORT at all where I live - it is just me etc etc and afraid of everything going on in the world.  Well, as the summer progressed, I kept getting worse. ALL of my doctors could not figure it out as my symptoms are MORE severe than they ever were in any withdrawal  They all quit and said go to my home state of Ohio where I have some friends, old drs who got me through the last withdrawal etc. and it was cheaper to live. I was thinking about moving out of state but then that became too stressful too.  I now cannot sleep at ALL!  I try to relax and my heart BOOMS out of my chest.  I get extreme adrenaline surges that set my whole body on fire - I feel like I am being dipped in acid and then I vomit.  I have lost 30 lbs.  I have kept trying to endure this on my own but the pain and burning the stomach, nerves, etc is so severe. I have had a seizure - I NEVER had that in acute. Othertimes, when I may get a few hours of sleep (usually every 3rd or 4th day) I wake DRENCHED in sweat, confused.  My hypoglycemia at that point is so severe.  It gets so low. My muscles are constantly twitching and shaking whenever I calm down but the second I calm down I realize the severe issues the cortisol for all these months has caused and the pain and agony is unbearable and my body can't take it.  I don't really know how to endure this - at this point I am losing function to take care of myself on my own - I don't have anyone to else or care for me here so drs are saying I must move for help.  They will not prescribe benzos again but are suggesting if I get to Ohio that I should ask my old psych about it or  go back on the regimen of K, Rem, and gaba.  I don't know if it will work.  And I'm afraid after all I have been through. We have tried other anxiety meds like visterol CBD etc and it made me sooooo much more anxious.  However, I cannot live like this - Has anyone EVER HEARD of anything LIKE THIS??????  What do people do??? Am I too far gone to ever heal?  Even when I am calm in the day it comes out in my sleep with these horrible jerky surges. I do not want to go back on Benzos but I don't know how else to deal with this.  Would I kindle? Thanks for any of your replies!!!

 

PS Sorry this is so long!

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Oh dear, this is so awful to hear. I'm so sorry that you are in this vicious wave. Perhaps it is just that, a wave from your overtaxed nervous system. Is there anyone from Ohio that can help you move back? Maybe having some resources will help you get through this? I wish I had some words to make you feel better but I have seen lots of stories of people who hit a major roadblock well after they thought they had recovered. As for going back on meds, no one can make that decision but you. You need to live your life so make the decision that feels right. Unfortunately as benzos go there is no playbook that fits all. Praying for you.
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wow. crazy that this really could be a part of it after all this time.  yes, I have someone who could come and help me get back to ohio. will it destroy me to fly though?  I would have to fly I live across the country. But I would have more resources and help if I got there. It would also be much cheaper.  I am not sleeping at all now, just heart poundings over and over that keep me awake and jerks.  Thank you for sharing others went through this.  Did they get better?  I just "survived" to get through my other two withdrawals.  Did they do anything specific to get through this.  Unfortunately, this is not just a wave I don't think.  It gets progressively worse each day and has been consistent for 6 months. You are right I do have to live life and right now I am not so I'll need to make a decision.  I just need SOME (even a tiny bit) of sleep.  Thank you for your replies and stories. I appreciate any more help you can provide. Thanks
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I think that if you have survived living through this you can make it on the plane. Finding some people to be around might be helpful in learning to live with whatever it is you are going through. Being surrounded by only your thoughts right now might not be the best thing for you. I don't do well when I have nothing to distract me. I honestly think you will be okay but I am sure you are super scared and I totally understand. 

 

JENNIFER LEIGH, PSYD is someone who I follow, you can google her and find her blog and YouTube channel. She had a long withdrawal and also a long, bad wave which sounds like yours although it was more like two years after not 5. As for surviving, I think we all do different things to get through because no one person is the same. Have you made a list of symptoms? Can you look back for the past six months and seen a pattern? Are things better or worse? I find that if I focus on the fact that I have gotten a little better that I can make it through the harder days. Sometimes I literally have to count my steps - 1, 2, 3. 1, 2, 3. Just repeat it over and over until I make it to the end of the day.

 

As for sleep. I can go 7 nights with no perceivable sleep but even those little 5 minute breaks where your body shakes you awake do help - micro sleep I think it is called. I do feel horrible during those times but I slog through. If you can lay in bed and not get super irritated with yourself for not sleeping, the mere quiet and rest will help you. I take a bath some nights before bed which helps ease some of my discomfort as it pertains to body pains and the burning skin. It also slows down my breathing and heart rate. If you don't have a bath or are afraid to get in one, just stand in the shower...Can you take any OTC meds for sleep? I am intolerant to everything but melatonin at this point.

 

Stress also really mangles me. The more stressed I get, the worse the symptoms. I am about to move with my family across country. The real estate market is insane so we leave in 2 weeks and only have a rental for one month and it is freaking me out but there is nothing I can do from here so I just keep telling myself that it will work out. It will work out. It will work out.  It's all I can do. Before I would have been taking extra Xanax to calm myself down - now I have to be my own Xanax.

 

Hang in there are best you can.

 

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Thank you all that is so helpful.  I have tracked symptoms and I am definitely getting WORSE - unfortunately.  In acute there were windows.  Now, no windows at all.  It is freaking me out.  I could get through it if I knew I would get some better days but for now it is just worse each day.  I like all your suggestions though.  I do appreciate it, very helpful.  Thank you!!  I just can't live like this forever.  Most definitely cannot.  I can't take any otc stuff.  It all makes me worse and makes me sleep less.  I just want to get somewhat better again

 

I am also SOOOO Stressed.  It is stress I can't get out of.  I was homeless for a short time last year.  I flared but bounced back within about 2 months.  This is different.  The stomach pain I had just kept me in constant stress.  Constant stress.  Then not finding care for it, losing work, losing function, having to do it ALL alone, thinking of the move etc etc has just debilitated me.  Now, my body is in so much pain and I'm still all alone with no care, I don't know how to even get out of it.  So, thanks for your reply.  I really appreciate it!

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Could be a very bad wave or a setback bit ppl tend to use that term once they have been completely well for a while.

You mention trying other meds?

 

Also you say we’re only 65% recovered and I have heard a few ppl say they had a massive way worse than acute just before they got much better than they had been so it could be that. I know Baylissa had that for about 3 months I believe.

 

Matt Samar wrote about his setback: https://www.madinamerica.com/2013/10/setbacks/

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Thank you. That's good to know. I used to work with Baylissa. My natural Dr does believe I had the stomach issue which really was too much for my nervous system and it just set me off into this crazy nervous system crisis. I don't know though. Regardless, I so want to get better. I'm just not sure it's possible. I am wanting to read about others who did it and had a situation similar to mine. Thank you for your reply.
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Very sorry about your circumstance. Understand you're in a real mental turmoil.

 

Agree that if you can get back to a support system, that's a better choice. Sounds like you might have hit a confluence of circumstances- isolation, financial stress, and physical trigger. It seems insurmountable, but it's not. You've done an incredible job getting this far. Can someone come to travel back to Ohio with you? Or can they drive out to get you? That might take some of the stress out of it.

 

Just asking- have you ever had issues with your blood sugar before? If it begins to go up and down then you tend to get burst of adrenaline and higher histamine. Both of these can cause sudden sweating, anxiety, and digestive problems. Can you tolerate small sips of non-acidic juice like carrot? Need to get something in even if it's Gatorade every couple of hours. That might help some of the swings. You can also get a powdered mix of something called ORS- oral rehydration solution from the pharmacist. They might have to order it. REI outdoor store used to carry it too. In most countries, this oral mixture is given for IV substitute as it contains electrolytes, sugar, and bicarb.

 

Buffered Vitamin C and non-flush niacin may give you some relief. I've used it through two tapers. Lots of research as to why it helps the adrenals and can calm down the anxiety. Know food is an issue, but taking in juice or a bite of peanut butter with these is a step.

 

High glutamate from any number of sources can crank things up. Once it gets going, insomnia and bad events are the result.  Taurine will drop this very efficiently. It also kills off some of the bad gut bacterias.  ^Watch blood sugar- need to take with food.

 

Peter Smith has lots of experience with guiding folks through WD.  Free web info: https://www.balancingbrainchemistry.co.uk/peter-smith/146/Accelerate-Benzo-Withdrawal-by-Increasing-GABA-A-Receptors-Natural-Treatment.html

Here on YT he mentions an herbal blend for sleep: Chamomile tea (strong) magnolia bark, lemon balm .

 

Hope there's something in here that's helpful.

 

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I'm not taking any new meds. Yes, have a history of severe low blood sugar, never properly managed although I do everything right. Hypoglycemic diet etc eating every few hrs even in night etc. I am taking steps to get out of stress. Someone will come to get me. Where I'd go will be much more affordable and there will be more people to help me, let me rest as they help me, and allow me to recover hopefully. They are positive and loving. I wouldn't be completely alone anymore. Thank you for your replies. I'm hanging in there and doing best I can. I also know I have too much bad bacteria in the gut. Trying probiotcs to help. I'll check out your suggestions. Thank you.
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Today nightmares every time I dozed with intense panic attacks and burning. It seems to be new systems every day. Am I getting worse and worse?
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I just want to say I’m so sorry for what you are going through. This process can be hell on earth. I also want to say it will end. I can’t tell you when or how, but you will get a window someday. Especially if you’ve had them before. When this crap hits us out of nowhere it’s almost like it’s even more miserable and stress inducing than when we were tapering and in acute. Because we’ve forgotten all that. It’s a severely traumatic experience and we block it out so we can keep living. Then it hits again and I feel like the desperation can be even deeper than before when we believed that we would be done with all of this some day.

 

Do not lose hope that you will feel better. I know it’s completely miserable right now and feels like there is no end in sight. Take good care of yourself anyways. Move back to Ohio if you need to. This is about surviving. Keep reaching out for support. I believe that support is essential to coming out of waves. Being validated, seen, heard, and cared about really helps calm the system. Which is why it might be good to move back home if you have kind people there. Sending you love in the darkness. You’ve survived this before you can do it again. You’re a warrior to have made it this far. Don’t forget how strong you are. Hugs.

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Cactus Sunset,

 

I'm having a bit of a set back too. You're not alone. I understand.

 

We can do it. Pamper yourself. Be good to yourself. Cut yourself slack everyway that you can.

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Now back to my heart booming out of my best when I try to sleep. I wake disorientated with heart racing super fast and super high blood pressure but then as I breathe it calms down and returns to normal but happens over and over. Again, never had this in acute. Is the something ppl have? Paramedics did EKG all was fine they said I lowered my pulse rate 40 pts just from breathing but it happens over and over in sleep.
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Are you still taking PPIs? My father, who has no history of psychiatric issues nor medication, suffered a horrible reaction to taking Prilosec. The same day as his first Prilosec, he became anxious and couldn’t sleep. I think I heard somewhere that PPIs completely deplete you of magnesium?

 

Anyway, now he has stopped the PPIs and he is much better. However it took several months to fully recover.

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I stopped about a month or so ago. I’m not recovering at all. Something else must be wrong with me. My muscles are spasming and burning and giving out on me. Disoriented and confused if I doze. No sleep tonight and so weak. Can barely move to type this. Something is REALLY wrong but vitals are still good so I don’t know.
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So what do I do??? How do I go about living? Can I get back to at least how I was in the spring??? I’m so terrified an in so much agony and desperation. Do I just give up??
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