Four months off clonaz-e-poison...

...and I'm still struggling to get through the day with scary erratic, arrythmic, ataxic breathing and a respiration rate that does NOT increase as it should when I try to exercise, severe difficulty swallowing, and chronic stomach distension and constipation. Other symptoms pertaining to the central nervous system have largely abated, but these autonomic functions remain compromised all day every day. I've told more than one doctor that I think my brain stem has been damaged, but they all say that's exceedingly unlikely. But aren't benzos sometimes neurotoxic? And what does that mean in the days to come? I'm afraid I'll eventually just stop breathing.

Fear is such a common withdrawal symptom, it shows itself in so many ways while we're going through this.  Fear for our health, fear of driving, socializing, recovery, lets face it, we're just afraid.  I wish we could tell ourselves that this fear is irrational and just a symptom but it's hard when our brain is telling us its real.

 

I hope you'll read some success stories, maybe you can find one that closely mirrors your situation, this might bring you some hope.

Benzos do not cause permanent damage to any part of the CNS and are not neurotoxic.  I have never heard about that nor found any studies to support that claim.  Benzo damage is temporary.

 

Unfortunately in the thick of your WD, your mind is telling you the opposite.  4 months off is a good start.  If you made it this far, you can keep going.

 

Try not to put a timeline on when you think you should feel better or when it doesn't happen by that date, you'll just be majorly disappointed.

 

Healing and recovery play out on their own timeline.  No one knows how long your symptoms will last or how intense they will be, but they will end one day.  WD doesn't last forever.

 

You won't stop breathing.  Your brain won't let you, even though you feel like you "forget" to breath.  Just like if you don't sleep much, your brain will provide "micro sleeps" that you are unaware of to sustain you until sleep evens out.

 

Please try to focus on anything positive, no matter how small it might be and cling to those things, instead of the symptoms.

A lot of ppl have swallowing problems. I know that Baylissa said she thought her throat had closed and would sip water to prove to herself that it hadn’t.

 

Distended stomach is clearly common - hence the term ‘Benzo Belly’. I know someone who had this for 2 years and recently it just suddenly went away of the course of a few days.

 

Breathing issues are common as are other autonomic functions.

 

I worry about brain stem stuff a lot as I already had ME/CFS before Benzos which caused a lot of autonomic problems but Ppl who get them from WD seem to recover. It can take a few years though.

 

It’s good you are well enough to even try to e Er is. Many ppl are co pletely bedridden from WD.

I've combed through too many success stories and threads on breathing to count, and it seems that no one has written about (experienced) four months solid of breathing that is without rhythm and is labored and slow when it should be fast, or so out of sync with the process of speaking and eating that I have to consciously time those processes. If even one person had written about it, and lived to tell the tale, I'd still have hope. At this point it's down to a miracle from God (which I don't discount).

I had a telephone appointment with a psychiatrist yesterday, and, though I had hoped otherwise, he was as woefully ignorant of benzodiazepine withdrawal syndrome as most of the other doctors I have talked to. He will try to expedite the swallow and pulmonary function tests, but beyond that...all I can do is pray. So I do.

Glad to hear he will expedite the tests to see if you can rule out anything and put your mind at rest possibly. I know that doesn't help you at all with the suffering you are enduring.

 

hugs..

I can almost guarantee the tests will not find anything?  Some symptoms, such as your perceived breathing issues, are the worst and dominant symptom for some people and no one knows why.  I had breathing issues too and it felt like I was breathing through a straw or that I couldn't catch my breath or breathe deep enough, or that I would forget to breath.  That lasted a good 4 months or more.

 

Ask yourself this honest question?  All of these so called breathing and throat issues you are experiencing only started after your CT.  Therefore, the Benzos and not something else is the "but for" cause of your symptoms.  "But for" you going CT, you wouldn't be experiencing these symptoms now.  And people are not going to specifically remember in a success story to write that they had a similar experience with a specific time frame.

 

Catastrophizing about your symptoms is only going to make things worse.  Focus on something positive instead.  It's all related to the temporary damage the Benzos did.

 

If it were something other than Benzo WD, you would knoe by now and especially after all of the medical tests.

 

Hang in there, it gets better, but only with TIME!

Oh, I don't doubt it's benzo withdrawal. It's the temporary/healable part that seems less likely with each day that passes. Tried to go for a short, slow walk today, and my breathing became so slow, heavy, and labored, with diaphragmatic spasms, that I almost had to call for help to get home.

Yesterday my breathing was so bad that I spent the day lying down - that's as much as I could manage. Dreamed last night that I was struggling to breathe, opening windows in an attempt to get air, and woke up with too slow, heavy, labored breathing. Four months, and I haven't had a moment of breathing normally or easily. And yet because it's not as visible as other symptoms like tremors, my mom doesn't believe it can be as bad as it in fact is. And she won't hear me when I reiterate that benzos cause all kinds of damage, and that even doctors who are familiar with withdrawal usually don't know how serious it can be. It's all too scary and surreal.

...and now my mom (my only immediate support person right now) says she has to set boundaries so she can have her life back. Meanwhile my oxygen saturation dropped to 94% and my heart rate rose to 125 while lying down, and I can no linger exercise because the breathing is so bad. But it's not the clonaz-e-poison, it's that I'm not trying hard enough to stay positive.

94% oxygen is really not out of the realm of "normal?"  And tachycardia is a somewhat common WD symptom. 

 

I would not try to exercise at 4 months off.  You should wait until your CNS settles down.  Exercise makes symptoms more intense for some people.

 

It's hard for your family to relate.  I've been there and done that.  Some of my family wanted me committed to a psych ward!

 

Just do the best you can to distract and not focus on your oxygen levels, breathing  or heart rate.  It only makes things worse. 

 

I was right where you are now a few years ago.  WD and symptoms are temporary.  This all ends one day.

...and I'm still struggling to get through the day with scary erratic, arrythmic, ataxic breathing and a respiration rate that does NOT increase as it should when I try to exercise, severe difficulty swallowing, and chronic stomach distension and constipation. Other symptoms pertaining to the central nervous system have largely abated, but these autonomic functions remain compromised all day every day. I've told more than one doctor that I think my brain stem has been damaged, but they all say that's exceedingly unlikely. But aren't benzos sometimes neurotoxic? And what does that mean in the days to come? I'm afraid I'll eventually just stop breathing.

 

 

 

Hi,

 

I had some similar symptoms. I would walk a few paces then get out of breath. I’m normally very fit.

I’m a saxophonist so it scared the shit out of me. I also had swallowing problems, acid reflux and other symptoms. I’m glad to say they have all subsided. I had all the scans and tests you can imagine and everything came back fine. It was definitely the benzo! They are evil and effect everything. It does take a while but things do level out. Go easy on yourself.

 

This is probably the hardest thing you will ever have to endure in your life. Focus! It will get better. Symptoms will subside. Its just a very slow process. And I mean slow. I'm almost 9 months out and still struggling but symptoms are manageable. People will not understand what you are going through. How can they? My whole family thought i was nuts. Mom didn't believe a medication could make me feel the way I did ,more or less being off of it. My oldest daughter thought I belonged in a mental hospital and my husband was the worst,  he just plain didn't believe me or thought i was making it up for attention. It's not their fault. They simply don't know. The more you obsess over your symptoms the worse you feel. And i know its hard not to focus on them but you have to try to distract yourself from them. I was so obsessed with how I was feeling i ended up in the hospital 3 times in one week with them telling me nothing was wrong with me. On one of those visits they gave me a dose of ativan that made me feel so good but once I got home and it wore off , all hell broke loose. Focus on you, distract, drink water and have faith. You are in my thoughts.