13 Months off

[[Si...]]

Hello peeps, 

Its been a while since I've checked in and well im a bit thorn between if I suffer from a medical illness or if this is still all benzo related.
Please im in dire need of people who walked the walk and could shed some clarity on how the process goes post withdrawal.
My last dosage was on 10th May 2023. 

Possible trigger events:
- Since December 2023 had covid around xmas and thought I was in the clear to take magnesium supplements to aid in recovery or so I thought, I guess it was too early.
- Stressful periods with my own family (kid going to school for the first time amongst other things)
- Winter of 2024 Extreme weather set backs? had lots of heart issues, exercise & cold related.
- March 2024 took Italian deserts for 4 days straight that had 1.5% alcohol in it. (yeah......silly me they where on sale and the packaging was unreadable xD)
- Now again symptoms after trial using an inhalator with salbutamol in it. (which relaxes the airway muscles,beta2-adrenergic receptor agonist)

Medical developments:
- Recently in februari 2024 diagnosed with light sleep apnea (11 per hour) Treatment is working CPAP at night in the sense the numbers are good but my symptoms are not.  
- Bought an 1-Channel ECG because everytime I got one from the doctor the symptom wouldnt happen, well it happened and I caught it. self diagnosis was ventricle tachycardia. (like the ventricles need to take over for very a short period, so not to be confused with tachycardia because I normally have about 72 bpm)
The cardiologist wrote an CT scan and different ECG monitors, all came back good but the ventricle tachycardia didn't occur so it couldnt be caught.
Im allowed to come back if im in the summer or winter when this symptom seems to happen more often and thus the chance to catch it. 

Current symptoms;
- Muscle tone issues like episodes of muscle tension that wont relax naturally in different parts of the body specially the neck and jaw.
- Movement coordination issues in 3-fold namely;
-- 1) like when you take the first few steps after coming down from the escalator but then all the time.
-- 2) when you take the stairs your leg sometimes takes a bigger leap then you wanted too.
-- 3) When walking Like the ground is uneven, my brain-tiny muscle contractions cant anticipate well enough if the ground is elevated with the next step or if its a ground decline or something like that. wobbling over the streets.
- Tongue was tingling for about a week with pins and needles. 
- Episodes of Belly blows up, cant breathe out fully (need to apply pressure), congested & tight feeling around the chest specially the left area just above the stomach, air accumulation, trouble bending over, heart palpitations, then the beat goes away comes back with reanimated beat, this is the ventricle tachycardia. 
There was an event where this happened for like 20-30 sec and I thought I would die then and there and would need an ambulance but I had that massive reanimated beat. afterwards I could continue working. I suspect a diaphragm hiatal hernia here in which the stomach is annoying the ventricles but could also be benzo belly but then still it shouldn't be able to annoy the heart like that because of the diaphragm unless the opening is big enough for the stomach to go through so can be both. 
Could also be COPD episode or MS. 

I have appointments awaiting me for the lung doctor early June,  and the neurologist in July 2024.
Am also working with a fysio therapist and a dietist because Im setting in everything about now. Im done with this and want some perspective and hope to hang on too.
This year im going all out into the medical field again. 
So im not expecting you guys to diagnose and for us to settle that here & now but I could use some clarity in terms of how does the post benzo withdrawal go?
I was expecting the pattern of waves and windows to subside more into smaller waves and windows. but rather I have huge set backs so more like 1 step forward 2 steps back kind of thing which would make sense with the trigger events listed above. but is it?
Fuck this process makes you nuts  so in conclusion how would a typical post w/d process look like the first 2 years or so?

Because mine seems to be getting worse 13months in. after I did so well during my tapper it isn't the reward one would typically expect to get. 

What else do I need to conquer ? lets go

Best regards, 
Sirdeepfry

Edited May 27 by [Si...]

[[Rh...]]

Hi!  Oddly enough your post jumping off journey is almost like mine.

The end of my AD taper in 2023 was actually good and I was able to go back to work and resume an almost normal life.  I jumped off July 2023 and in December I took a migraine medication that set me back into acute wds.  I have since had several setbacks and actually become worse and worse as the months have go on.  I’m in my 10th month off and will enter my 11th month off June 14th.

I too think I have something else going on other than WD and have turned to western medicine once again.  I have a neurology appointment coming up and some other specialty appointment as well because I feel like I have MS or some other brain damage.  

From what I understand though, they say it takes anywhere from a year to 18 months and even 2 years to fully heal (and even longer for others).  It is also very normal for the journey to be 1 step forward, 2 steps back and then 2 steps forward, 4 steps back.  It is very non-linear and doesn’t make any sense at all!

I am trying my best to make the 18 month mark before I try anything, but it is very hard when the symptoms are unrelenting and seem to be getting worse.

all this to say, you are defiantly not alone in this experience and I do think both of us are suffering from wds still.

 

[[Si...]]

Thanks for your reply! and Interesting to know.

I think its good that we are also going back onto the medical field knowing that in itself is a hassle and can bring on some stress. but we can take a punch  At some point we gotto right? and lay out two lines of possibilities. 
What symptoms are you struggling with? and are they familiar to you from benzo w/d? was the connection from these symptoms quite clear in relation to benzo before? 

If this what im experiencing is still benzo w/d I will be baffled and at the same time not at all.
It is defiantly not out of the question. 
Im very curious in how peoples experiences go post w/d during the first 2 years. As you mention its very normal for our process to go non- linear..

Speaking of which yesterday during work I did have an all too familiar symptom; my thumb going numb and signals almost wanting to shut off to go into a uncontrollable rhythmic motion, a thumb clonus if you will. now as I write this I realize how bad it sounds   but to me that was one of the first w/d symptoms I got 4 years ago. 
It being so familiar made me lose this huge weight off my shoulders that actually it might still be benzo.
Because I healed from this symptom before like for years. same with the walking coordination issues. 
also a couple of days prior to this I did take; not one, but two inhalations from the inhalator with salbutamol which relaxes the airway muscles. working on the CNS I bet. 

With events like this that could trigger benzo w/d it could easily be explained. yet Its really hard to tell left from right while I do also suffer from light sleep apnea.
At the same time I gotto believe it is w/d because that was defiantly what it was before and I healed from that. so why wouldn't I be able too heal from it again? 

Eitherway best of us luck to us both. maybe it is an idea to keep eachother posted in here?
Im going to do my routine of taking a short walk outside, seeing the sunlight to set the biological clock to maintain good sleep hygiene, then do some small streching workouts, have a healthy breakfast and go to work. 

Edited May 29 by [Si...]

[[Si...]]

To note on neurological conditions:
Thankfully the criteria for something like that is well studied and quite strict. so someone couldn't easily get miss diagnosed. although it does happen it wouldn't happen easily.
I my case for example I think it would be odd to have parkinsonism as my 1 first year was the worst, with massive healing periods inbetween. the progressive nature of such a disease doesn't fit the symptom image overtime. 
Im right in saying that?

So as far as neurological disease goes the most likely candidate that looks alike is MS with the flare-ups and triggers and such. Or taking into account cause and consequence. the fact that we where on benzo and defiantly suffered from that makes it far more likely we are still suffering benzo w/d.

[[Si...]]

Reporting back:

A couple of tests later.
Lung function tests, COPD test, Astma test, x-ray picture and diaphragm screening all came back normal. The lung docter mentioned Hiatal Hernia is still a possibility but our visits ended there. 

Neurologist: Saw me with my symptom story he did an MRI of the brain and neck: no MS, No cancer, No ALS, no Parkinson. 
Im currently not doing well Im going to write a letter to the neurologist for the episodic diaphragm issues.
Hopefully he will see me and do a exam of the phrenic nerve like a conduction study not sure what is best. I trust him. 

Thats it for now. 

 

[[ry...]]

Hello. Hope you’re doing a bit better. I just came across this post and can relate and hopefully it helps knowing it’s not just you. But I can completely relate and know how you are feeling with the balance and breathing issues. I also am at about a year off benzo’s now and feel I’m at the same point health wise. Overall I’m actually pretty good but just can not get to the point of “normal.” But for months when I could tell I was getting better I still felt like I had to have some sort of autoimmune or other health issues like lymes. But I’m finally very comfortable and don’t feel like I’m dying. But how you described how you walk and breathe is my issue. I can not turn my head and move. It’s like I fall all over the place. I also can not lay on my back because my chest feels like it’s crushing and can’t exert myself from weird breathing that’s hard to explain.