When I stop Konoplin all my body stops functioning

[Alexandre]

I'll try to keep it short.

I have chronic widespread pain (technically fibro) since 17. I'm 32 now. When I was 24 I started having massive stomach pain after eating anything. Things got really bad with all my symptoms. A lot happened in my medical history to explain here but, I could get it under control. I tried so many things, I wasn't sure what did what. One of those things was Klonopin.

 

Problem is I took it for 6 years. Then I decided to stop Klonopin last year (2021). I tapered 0.1mg each 2-3 weeks. From 2.5 to 0.

I had some really bad side effects but it was bearable. Things got really bad when I hit 0.3.

I started having acute stomach pain that lasted 8 hours after eating and that kept getting worse and worse.

Then everything got much worse to the point I couldn't eat anything but crackers and water. 

It was like my whole digestive system stopped working. It was hard to swallow and sing.

I started feeling freezing cold always, nausea, anxiety skyrocketed, my whole body pain got MUCH worse. Everything was going downhill.

Then a Dr. put me on Onfi and in 15 days I was around 70% better. I could eat again, normal body temperature, etc. etc.

 

Anyone has any idea what's happening?

 

[Pistol]

@Alexandre it sounds like clonopin withdrawal to me. You were taking it for so long that even a slow taper may have triggered these symptoms. This article might be helpful: 

Klonopin Withdrawal: Symptoms, Timeline, and Treatment (verywellmind.com)

[Alexandre]

But why the withdrawal hit so hard all of the sudden? Like, I was tampering slowly and one day all of the sudden my stomach stopped functioning. Then it got worse and worse.

Also, the first time I had that stomach pain was right after a Duloxetine withdrawal and before I even tried any benzo.

I was taking Ambien though.

 

sorry for so many questions but then I just can't withdrawal at all?

Because I don't know if I would survive that withdrawal or not, but I certainly wouldn't without a feeding tube.

Right before I got back on Benzos, a dr suggested having a gastrectomy. 

[MikeO]

I am just happy that i do not have a clinical need for some of these drugs.

[Alexandre]

3 hours ago, DysautonmiaMatt said:

Maybe the taper was too fast? I have seen this method in posts on getting off benzos.  I am on Xanax myself so one day I may have to wean off but it is one of the most helpful drugs I take for managing my dysautonomia. 

https://www.benzo.org.uk/manual/

Well I don't think so, I went 0.1mg every 2-3 weeks. It took me a whole year to go from 2.5 to 0. 

Idk, I could go slower, but I think if I have to do it all over again (since I'm on benzos again) I would do a fast taper with flumazenil on some specialized facility. 

The thing is, I went to a buuunch of Drs. and none of them thought it was withdrawal happening, they all thought that Klonopin was simply working as a good treatment to something else.

 

[Sushi]

2 hours ago, Alexandre said:

The thing is, I went to a buuunch of Drs. and none of them thought it was withdrawal happening, they all thought that Klonopin was simply working as a good treatment to something else.

 

When a doctor put me on a Klonopin taper (it wasn’t my idea, the doc just didn’t want to prescribe it—I was taking a low dose for sleep), my Afib episodes increased exponentially. Another doctor (integrative) said that he understood why this happened as Klonopin affected catacholamine levels—and he put me back on my low dose and the Afib episodes were greatly reduced.

[Alexandre]

Yep, similar here. It was the first time I was diagnosed with pots, my heart would go to 195 when I got up. Sometimes even sitting.

With Clobazam things are pretty much better now. I don't like myself that much with Clobazam, it makes a lot of things less interesting, I become more cold and irritated. But I prefer anything over what I experienced those last 6 months. It was h*** on earth.

[Alexandre]

No, I'm on Flornief.

I have a pretty low BP and I think Betablockers are for High BP right? (correct me if I'm wrong).

 

But I don't think Florinef is doing anything for me to be honest, I'll stop it soon and will discover.

Edit: Yes, about taking lower dose. I don't think I can do that. No one has any idea why but my digestive system just shuts down and stop working when I don't take it. It's bizarre, but I think I might need an even higher dose. For now I'll hold for a moment.

[Pistol]

@Alexandre - have you seen an gastroenterologist? Maybe your GI problems are unrelated? Have they checked you for gastroparesis, a condition sometimes seen in dysautonomia. 

[MikeO]

7 hours ago, DysautonmiaMatt said:

From my understanding for digestion the body uses parasympathetic nervous system. Maybe if one is stuck in sympathetic overdrive digestion will be affected. This has happened to me. When I flare up I don't have well formed stools and can sometimes see undigested food. When not in flare they are formed and all is good.

You are correct that the parasympathetic NS is what the body uses for digestion. When i flare up i get the above mentioned symptoms as well and just like you clear up once i am out of it. So far i have not pushed to see a gastrologist as i don't see any tell tale signs of any GI issues that would require to. No bloody stools, mucus etc.... 

In the past when i would see more frequent tachycardia or random tachycardia events my GI problems would follow (sympathetic NS in overdrive) with my current meds i have done much better. One drug that did help is Ranolazine. One study with the drug did show that it works on the body's P&S tone (favours the parasympathetic NS) and has kept my heart rates more stable. I do still get tacky but my bp really has to be low in order for that to happen.

I do still run into some GI difficulties but are a bit different and more related to my postprandial hypotension so i do see following what @Pistoldid and consult with a dietitian.

My care team is also considering re-challenging Pyridostigmine. This drug also favours the parasympathetic NS but will allow the sympathetic NS kick in (or something like this) upon standing (helps with the neurogenic hypotension). Pyridostigmine also helps greatly with the GI motility      

[Alexandre]

12 hours ago, DysautonmiaMatt said:

If you are concerned about how klonopin makes you feel you can ask your doc to try a different benzo to see if that still works for your issues and does not have same side effects. For me klonopin is too sedating even at a small dose. 

Actually I'm taking CloBAZAM (Onfi) and not Klonopin now. But I felt how I was without any benzo and realized I get irritated, agitated and a lot less empathetic with benzo.

The same happened with Klonopin, but since I was for so long on Klonopin, I thought I was like this before stopping Klonopin.

Maybe another won't do that? I think he gave Onfi cause I can take it both day and night and I don't feel sedated (nothing at all). And I think it has less risk for dependency (but not sure about that one)

 

6 hours ago, Pistol said:

 - have you seen an gastroenterologist? Maybe your GI problems are unrelated? Have they checked you for gastroparesis, a condition sometimes seen in dysautonomia. 

Yes, I've seen more gastroenterologists than stars in the sky. They have NO CLUE at all. One of them said I needed a gastrectomy.

Technically the diagnosis was gastroparesis, but the gastric emptying study didn't show problems and they have no idea why Benzo makes everything work again.

I've had 4 endoscopies. All of them perfectly fine.

[MikeO]

1 hour ago, Alexandre said:

Yes, I've seen more gastroenterologists than stars in the sky. They have NO CLUE at all. One of them said I needed a gastrectomy.

Technically the diagnosis was gastroparesis, but the gastric emptying study didn't show problems and they have no idea why Benzo makes everything work again.

I've had 4 endoscopies. All of them perfectly fine.

I have seen so many posts of folks firing their gastroenterologists. Again i won't go down this rabbit hole (my daughter did and it was a waste of resources and time). I have also seen too many folks having issues with drugs that work across the (most blogged term the brain barrier). I just won't do these drugs one that comes to mind is guafshine (seen more folks that have issues with this..) Again they may have there place just not long term IMO.

Unfortunately we all have to eat and take in fluids. I wish you the best trying to sort out your issues. 

 

 

[Alexandre]

17 minutes ago, DysautonmiaMatt said:

You are taking a drug that is in the benzo class but I am sure you already know this which could explain why it is helping you like klonopin 

https://www.mayoclinic.org/drugs-supplements/clobazam-oral-route/side-effects/drg-20075333?p=1

From some research I read from Dr Derrick Lonsdale MD who used to work at the Cleveland Clinic he wrote a book on how thiamine deficeny can cause dysautonomia. There are posts on this site. The TTFD form is suppose to improve gut motility.  They have thiamine blood tests to check levels.

At least you have found a drug that helps your condition.

 

Yes! I'm really glad I found something, but thank you for the link. I didn't know. I know close to nothing about dysautonomia.

I know tons about fibromyalgia, CFS and even Ehlers Danlos. The diagnoses I've had through my life. 

Dysautonomia is something new for me, so anything you can show me about that link with the gut it would be awesome.

 

Just to be clear, last year I was going on trails, living on the beach, working out heavy, having a night life, making my company grow a lot. I had a lot of pain in my body, and sometimes in the gut, but I could function like a normal person (sometimes more than a normal person). All that while tapering Klonopin (although I had depression effects and other stuff from the tapper).

Then in December everything crashed when I got close to 0mg. I was shivering cold, couldn't barely stand. Light and noise sensitivity. A LOT more pain. etc etc.

Now I'm getting back to where I was prior to that crash.

[Alexandre]

7 minutes ago, DysautonmiaMatt said:

EDS and POTS are very common together. My sister's kid has both. There was a doctor, Dr Cheney? - you can google to verify and get more info  that I have read that used low dose klonopin for CFS with other stuff. If I recall correctly he never used high doses and theorized that someone with CFS brain would get overwelled with stimuli.  My sister's kid is on Cymbalta for pain and depression/anxiety but it is common to script to people with fibro. 

Yes, I remember Dr. Cheney saying it was among his top 3 best medicines for CFS.

But I don't think I have EDS tbh, neither most Dr. That was just one Doctor that guessed it. 

Cymbalta was the start of my nightmare. I didn't mean to make my first post too long so I didn't include all my past history. But everything started when I was taking Cymbalta 30mg (the lowest dose) and was having a lot of side effects. After around 1-2 months of taking it, my pain just got like 60% better. But I didn't thought it was because of the Cymbalta since I was doing a lot of other stuff at the same time. We tried to increase the Cymbalta dose, but side effects were unbearable so we decided to get me off of it. The withdrawal was hellish. And that's when I first started having these stomach pains, and couldn't eat anything. It got worse and worse and worse. I couldn't left my bed for 2-3 months and then I couldn't barely leave my house for around a year. It took me like 2 full years to get back to where I started. (still with a lot of pain, but functioning normally). 

Now I wonder if it was the Cymbalta withdrawal or the fact I was taking Ambien (or both). Because when I finished my Klonopin withdrawal, I was put on Ambien for sleep and while the effect made half my symptoms go away for around 3 hours, after one month I started having a lot of the same symptoms I had back then. Like brain fog, light/noise sensitivity. It's just crazy...

[MikeO]

35 minutes ago, DysautonmiaMatt said:

You mean guanfacine?  I tried that drug and it was horrible!!! Only took half the lowest dose pill one time and that was enough. 

Yes that's the one. Thanks for the correction.

[Alexandre]

4 hours ago, DysautonmiaMatt said:

My sister found some info on it and read it can actually make POTS worse and wants her daughter off it but knows it will not be easy. She told me she read where people are removing one ball from each cap it is so bad. I told her she can get it compounded which could make stopping it easier. There are serotonin receptors in the gut I think more than in the brain which is why SSRIs can have lots of GI side effects.  I tried Zoloft and that was no fun with all the sides - including gut. I do not know much about Cymbalta or what happens when it is stopped. I have read an article from a PHD that basically said SSRIs cause the brain to make serotonin all the time without regard to how much has already been made because re-uptake is blocked - which could cause too much to be present and lead to serotonin syndrome as worst outcome. I was really pressured to try and SSRI by my doctors and gave in. Now I am starting to regret I listened. Good thing I never went to a high dose.

For sleep Lunesta has been studied for long term use.  I have tried it but don't like how I feel the next day. Gabapentin is what I take.  I am on 5mg Lexapro and it worked for awhile but now it is increasing my anxiety big time, sweat easier and just don't feel right on it now. SSRI/SSNRIs are powerful drugs just like Benzos. 

Yes I compounded it 25, 20, 15, 10, 5, 0 and it was pretty bad but not unbearable. The problem was that I kept getting worse and worse after the withdrawal but no Dr. seems to believe it was due to the Duloxetine. I ended up a whole year in a pretty bad shape and than another year getting back to normal again.  But bodies are different and now I question if it was really the duloxetine withdrawal created that h***.

I take pregabalin which is pretty much the same as gabapentin, and it was the best drugs for me. No side effects and helped me with the pain, but doesn't seem to do much for sleep for me I guess...

[kimpotster]

On 7/26/2022 at 10:53 PM, DysautonmiaMatt said:

From my understanding for digestion the body uses parasympathetic nervous system. Maybe if one is stuck in sympathetic overdrive digestion will be affected. This has happened to me. A benzo calms the CNS. When I flare up I don't have well formed stools and can sometimes see undigested food. When not in flare they are formed and all is good. I hope that was not TMI. 

I appreciate you sharing this and don't think it is TMI, especially considering the wide range of issues we have! Also makes me feel more normal, if that's possible  Are your stools ever lighter in color when you are flaring? 

[JennieHJO]

I have Hyperadrenergic Dysautonomia, which means that my body is flooded with adrenaline throughout the day and night, always in”fight or flight “ mode. I take Trazadone and Klonopine (1.0 mg) at night to help me sleep. It works OK. 
 

BUT, when we went out of town last weekend, about 3hrs from home, my meds didn’t make it into my bag. I didn’t realize what a big deal that was.

OMG. Within 24 hours of my last dose, I started into withdrawal, as if I were a heroin addict. Worst day of my life. We got home, I took pills, and was better w/i about 2 hours. But 5 days later, I’m still feeling the effects.

My question: Has someone successfully weaned him/herself from Klonopin? If so, how??

 Thanks so much.

 

[Sushi]

5 hours ago, JennieHJO said:

Has someone successfully weaned him/herself from Klonopin? If so, how??

I've successfully reduced my dose by 3/4 but my doctor and I decided to keep me on a very low dose as it is beneficial to me. The secret? Tiny reductions in dose over a period of many months.