GI Symptoms During Wave

[Guest [...]]

Hi @[mi...]

Both crashes were the result of tapering faster (a higher percentage) than my system could tolerate. 

The first crash was at 6.5mg after 1mg reductions, and symptoms were extreme fear, agoraphobia, intrusive thoughts, Dp/Dr, anhedonia, fatigue, internal vibration/tremor, dizziness, vertigo, suicidal ideation, extreme anxiety and depression, nausea, severely impaired digestion, bloating, and quite a number of other symptoms. Too many to list, or remember.

Most current crash… same as the above… although, possibly a slightly lighter shade of the above symptoms.   

[[mi...]]

@[Wi...] did these crashes come on suddenly wirh symptoms seemingly worsening significantly or was it a slow ebbing and flowing down. Mine came on quickly over a week and then each time I made a different change symptoms would get worse. I’m having more windows now that I’ve been on accord for awhile but the waves still suck. But I’ve only been holding for two weeks so I’m going to keep holding and trust it will all settle down 

[Guest [...]]

It can take some time to stabilise @[mi...]

It sounds like there are some positive signs, and it may help you to know that the path to stabilisation isn’t necessarily linear. 

The first crash was more like realising I can’t put myself through this anymore, as each reduction was brutal until I had no choice but to hold and stabilise. 

The recent one was sudden, but when I look back, I may possibly have been able to detect what was brewing if I had been paying close attention. I was only reducing at 5% every two weeks, but once I got below 4mg, I should’ve slowed down and reduced that cut percentage slightly. 
 

‘I think you even mentioned to me that looking back there were signs things were becoming difficult even before the switch to the Teva, so the switch may have been the straw that broke the camels back. And, you’re not the only one to react very poorly to an attempted switch. 

Keep holding @[mi...]

[[mi...]]

@[Wi...] thanks so much. So yeah the thing that is so difficult is that you can have a day like I had yesterday where I felt 80% at times and I cuddled with my kids in bed and felt so much relief. You think oh ok that was rough but I’m glad to be feeling better. Gut not bloated, relaxed most of day. You tell yourself even if I have a rough day tomorrow I’ll handle it cause I’m getting better. Then I wake up this morning and the gut pain is severe and the brain is going nuts and I think I’m not gonna make it. It’s like how is this possible to feel. I know it’s not linear but going from better windows back to severe waves hours or days apart is insane. Makes you wonder how it ever ends if it can get so severe so quick. I guess eventually the windows just stay open longer until they’re open most of the time. I guess that happened two years ago to me last major crash. 

[Guest [...]]

I feel for you, @[mi...]

Im not having the gut pain you are, but I’m experiencing periods where my digestion comes back online and bloating and burping decreases along with other symptoms, and then it all goes to crap again. I just keep having to tell myself the same… it’s not a linear path to stabilisation. 
 

Honestly, we really should both be writing everything down daily to give us a clear picture of where, and by how much, things have improved. You can never see a thing when you descend back into the fear and darkness. 

[[mi...]]

@[Wi...] How are you feeling? Anymore windows? Question for you. In the past when you recovered before, do you sometimes feel like some things get worse before they get better when you’re holding. I have no idea what to expect. I got a good window the other day, but today I feel like I’m gonna lose my mind and my GI was in so much discomfort with cramping and stinging pain everywhere. I know this takes time to stabilize but were those 6 weeks of feeling nothing in the last something where you felt like you were all over the place?

[Guest [...]]

From memory, I didn’t notice any decrease in symptoms until day 35 to day 42. 

Im in the same situation as you. I’m on day 20, and questioning if I’m actually going to stabilise at all, because the last few days have just been the worst, but, I know I have to keep holding to give my system more time to begin to settle down. Stabilising is not necessarily a linear process. Because you are unstable, you can be very sensitive to external stimuli… you may be triggered by external happenings that normally wouldn’t impact your nervous system. Even a fearful thought of not stabilising will impact your nervous system and increase symptoms. 

Please know that although I’m a moderator here, I’m also just a member, and when I’m thrust into a wave and stuck waiting to stabilise, I am just as vulnerable to that fear as the next person. So much so, that I then often need others to coach me through my symptoms and the ever present fearful negative bias that plagues us when we’re in the thick of it. 
 

 

[[mi...]]

@[Wi...] That makes sense. I’m on day 16. I was so so functional before this. I wish I had assurance this would lift at some point. I mean it makes sense that it should especially since I was so well three months ago but you just wonder if you’re broken for good this time. Scary. I wish you well and please keep in touch with your progress. 

[[Cu...]]

I had a terrible GI symptoms: very massive bloating, constipation, and feeling like my intestines are being scraped with sandpaper. The drugs Colofort and Trimedat helped me, which I took for 6 months each. And diet. Without them I couldn't go to the toilet at all. Now I'm 28 months off and my gut almost returned to normal, with the exception of swelling of the body. But I can already go to the toilet without medication.

[[mi...]]

@[Cu...] was this during your taper or after you jumped that your GI did this. Also how fast did you taper and from what dose. 

[Guest [...]]

@[mi...]

Try and do everything you can to avoid becoming more distressed with your symptoms. That stress will push you deeper into the sympathetic nervous system (fight or flight) which will only exacerbate symptoms. You want to try and remain as calm as possible to get back into the parasympathetic nervous system (rest and digest). Digestion and detoxification pathways shut down when stuck in the sympathetic nervous system as all energy is needed to fight or flee from danger. 
 

Try and calm yourself as much as possible. Don’t marinade in fear of not stabilising, as doing so will only hold stabilisation up and increase your symptoms, including your GI symptoms. As soon as you slip back into the parasympathetic nervous system, your GI issues will most likely improve dramatically. 

[[mi...]]

@[Wi...] thank you. I’m on day 18 of my hold. Partial windows every few days but otherwise nothing. Cramping in pelvis and nausea and dry wrenching won’t abate. If that settles the rest would be so much easier. How are you feeling?

[Guest [...]]

Extremely vulnerable, but not at my worst.

We’ll see as the days pass. 

[[mi...]]

@[Wi...] I feel like my panic is lessening. My bloating is not as severe most of the time. But the spasms and cramping are untouched. Still severe and hard to eat and terrified of food. Sleep is hit or miss. Can’t tell if anything is shifting but I’ll take less panic. We will see how this goes. 18 days is early. If the gut and pelvic spasms stop I think I’ll be so so much better

[Guest [...]]

Symptoms won’t resolve across the board all at once. It’s often a gradual process where you see slight improvements. 

[[mi...]]

@[Wi...] Well yesterday around 4pm and still until right now I'm in about a 70% window with much less symptoms. I have had a few of these in the last 7-10 days which I hadn't had before that. So I will say I am definitely seeing signs of stabilization, but also keenly aware the darkness is right there to swallow me up at any second. I do know that before this all happened I had zero darkness for a year and just minimal tapering discomfort so that is what I'm hoping to return to. I have to keep reminding myself that this isn't my "taper normal", this is complete destabilization. Im dealing with symptoms that weren't part of my life for well over a year of tapering K. I never even thought of them. Tapering symptoms were minimal headaches and never derailed me, even with cuts. Just minor blips. This is different than those. If I keep remembering that it helps me realize this is temporary and I can enjoy a tolerable ride off this stuff.

Edited September 15, 2023 by [mi...]

[[me...]]

On 03/09/2023 at 15:42, [[R...] said:

Hello mikeyjoed! 

Yes, one of my main and most disturbing symptom is nausea, that gets a lot worse in a wave. It comes along with head pressure and chest pain etc. It has become somewhat better, but I am still quite in the middle of this. I noticed that a lighter, healthy, vegetable diet and still mineral water does help in my case. 

Hi ruebenralph 

Forgive me for asking I'm new here is the head pressure like a bad tension headache?🧜‍♀️thanks

 

 

[Guest [...]]

4 minutes ago, [[m...] said:

@[Wi...] Well yesterday around 4pm and still until right now I'm in about a 70% window with much less symptoms. I have had a few of these in the last 7-10 days which I hadn't had before that. So I will say I am definitely seeing signs of stabilization, but also keenly aware the darkness is right there to swallow me up at any second. I do know that before this all happened I had zero darkness for a year and just minimal tapering discomfort so that is what I'm hoping to return to.

The good signs always present through the remaining fear and doubt. 

[[mi...]]

@[Wi...] This just continues to get more pronounced until the wave is over right? Meaning, at some point this goes back to background noise and life resumes when stabilization is reached. Not perfection, stabilization.

[[Re...]]

Hello @[me...], 

in my case it is rather a combination of pressure with numbness and cold, hot sensations. As my other symptoms become more articulate in a wave, this would definitely follow. 

I honestly hope you are finding ways to ease your migaine like headaches. I am so sorry we need to go through this.... We are all so unique with our list of w/ symptoms, as it turns out. Would've never guessed... 

Sending you hope, love and healing RR

 

 

[[Cu...]]

On 14/09/2023 at 05:10, [[m...] said:

@[Cu...] was this during your taper or after you jumped that your GI did this. Also how fast did you taper and from what dose. 

I didn't taper, but thinned out for 1 month (nearly CT), my dose was 2,5-5mg phenazepam during 9 years. GI symptoms started in 3 month when I got Covid in addition (in mild form). In general, I see the benzo belly from a lot of people on forums.