727 replies to this topic

[fishinghat]

See edit in post above. Ugh.

[frog]

LOL no worries. I'm guessing the Seroquel drop is messing with my sleep quality and that's what's making me tired. In terms of planning out the next drop, should I wait until my sleep quality improves again before dropping or is that unlikely to happen while I'm actively tapering? 

[fishinghat]

Your sleep will improve with time. Let yourself stabilize before dropping again. It normally took be a couple of weeks to recover from a drop.

[invalidusername]

Hey Frog...

 

Just catching up and whilst nothing to add to Hat's advice, just to say that I will be thinking of you. It can be so unsettling when the anxiety strikes out of nowhere and grabs you just when you thought you had a hold over it. 

 

Best thing is to not let yourself feel bad, blamed or worried by it. It is the result of a chemical imbalance that you cannot control and it will pass. Nothing you could have done would have changed it, any more than what you had for breakfast yesterday. 

 

Take care petal.

[frog]

Thanks IUN. Those are helpful words. It really was very out of nowhere just as I had been feeling more confident about the improvements in that department. If it's the drops that feels like an easier pill to swallow though because at least there's an identifiable trigger that will eventually go away when I finish tapering. 

 

The worst part is that I've already been experiencing more anxiety around the bad IBS-D I've been battling and when the anxiety gets worse for any reason, so does the IBS, and vice versa. It feels impossible to break the cycle without getting the IBS figured out. 

 

I've been taking a soluble fiber supplement for about a week now which has actually helped a lot, though there's still plenty of room of improvement. I spoke to a dietitian this morning. He seemed encouraged by the fiber helping and said he suspects that something triggered the initial diarrhea (potentially the withdrawal) and that the issue with diarrhea is that it creates more because it irritates the lining in your intestines. So what my gut needs is a break and a chance to heal and strengthen so that everytime I eat my sensitized guts aren't freaking out and making me run to the bathroom. We're hoping that the fiber will provide that break, but these past few days when the anxiety's been bad, things are taking more of a downturn again. 

 

It just feels like for every win there's an even bigger setback!

[frog]

Haven't posted in a while. 

I'm nearly 9 months away from what I guess was my internal stress system breaking down after cold turkeying Cymbalta. I really expected things to be 99% back to norm by this stage, but they're just not. It just seems really really hard to believe that 9 months on, things are still in flux, so I can't help but consider that it's just stuck this way. I still wake up with some anxiety most mornings, mostly it's a tightness I feel in my chest that I can't shake. And there are still numerous days where I feel this kind of general sense of "dread" that I can't quite place or pinpoint. 

 

I went about a month without having any emotional outbursts and now crying for the second time in 3 days. 

 

I want to acknowledge that I'm very much improved from where I was 6 months ago, and even from where I was 3 months ago I see a difference, but I feel like the last couple of months nothing much has changed.

 

FH I know you mention here often that it takes 2 years for nerves to heal. I think you said this was true for benzos, but do we know if it's true for Cymbalta? 

I'm very concerned that I'm still like this 9 months out and this is permanent. Is there anyone who did not cross over to another antidepressant who got all the way better over this long of a period of time? 

[invalidusername]

Hey frog...

 

Just casting my mind back to 9 months after my cym stopped... which would have been almost 12 months to the day. If it helps, I was still having the same morning that you mention. They are the last thing to go as many say. The dread that you just cannot pinpoint is it exactly. 

 

But as you get further toward recovery, it does look less and less. Look at the CV graphs, the rate remains, but the amount by which the figures drop become smaller - it is the same with our recovery. The key is to remain focused on what has come before you and that you are probably improving, but so small for you to notice as YOU live with YOU every day. Others may notice the difference more readily.

[fishinghat]

I have searched diligently and can find no such data on any of the antidepressants. However, my educatuion and experience does see similar patterns with so many other neurological medications. That 2 years plus or minus to recover seems fairly uniform. Many of our members have taken over 9 months to recover so don't give up yet. It will still get better.

[frog]

Thank you both. 

IUN you've been off for nearly 2 years? 

Its forever helpful to hear of others who share the same experience since there are so few that so much of the process is just believing that something is happening without anyone actually confirming whether it is or not. 

It just really is so so hard to imagine that after 9 months it's not over yet. 

 

I hear you IUN about the changes being so gradual that theyre not perceptible day to day and I'm hoping you're right. As long as someone can definitively tell me that things are still changing, I can accept that... I think. Do you remember when you finally realized you were pretty much back to your old self? 

 

FH I sincerely hope you're right that it's still getting better. It really kills me to think that I might always wake up anxious or spend my time "dreading" nothing in particular

[Mxpro32]

Waking up anxious is my biggest issue right now too.  It sucks to wake up filled with anxiety and not be able to go back to sleep.  Sometimes I’ll lay there for a few hours until the anxiety subsides so I don’t have to start my day that way.  

[frog]

I almost never can go back to sleep once I wake up except if it's in the middle of the night. But I'm also still taking Seroquel (though now down to half my original dose!) so that helps. Otherwise I don't know if I'd ever be able to fall asleep. 

 

I had a pretty rough day and evening yesterday. I had some bad pelvic pain all of yesterday which I haven't had at all since I stopped Cymbalta, but it made me super stressed out and anxious because it was the whole reason I went on Cymbalta in the first place years ago. I also get really anxious thinking about how COVID isn't going away and I think it's a big driver of the unconscious stress that I feel daily. On top of the general COVID uncertainty, because of the pandemic my job is now in jeopardy, which is also extremely stressful, and as a cherry on top one of our cats has been having some sort of skin issue for the past month or more. It might be fleas or mites (also a stressful possibility because the cleaning involved makes my head spin) but we don't want to take her to the vet because we're not allowed to go with her and she doesn't do well alone. We gave her some flea medication and hoping for the best. 

 

I don't know about you all but how can I expect my brain to get better when I can't seem to get out from under all this nonstop stress???

[fishinghat]

Constant stress=constant anxiety

 

All you can do ia try to avoid any stressers you can and use your coping skills. The only other thing is a non-addictive medication, supplements like melatonin, diphenhydramine, suntheanine, cbd oil, etc. 

[frog]

I believe I still have some suntheanine and ashwaghanda. Should I start taking them again? Is there any interaction with: Seroquel, Gabapentin, vitamin D?

[fishinghat]

There  should not be any interaction that I am aware of. I would suggest you tyry 0ne at a time so you can see what works and what doesn't.

[invalidusername]

There  should not be any interaction that I am aware of. I would suggest you tyry 0ne at a time so you can see what works and what doesn't.

 

Agreed. I would start with the Ash as that works quicker so you will know whether there will be benefit there or not.

[invalidusername]

Thank you both. 

IUN you've been off for nearly 2 years? 

Its forever helpful to hear of others who share the same experience since there are so few that so much of the process is just believing that something is happening without anyone actually confirming whether it is or not. 

It just really is so so hard to imagine that after 9 months it's not over yet. 

 

I hear you IUN about the changes being so gradual that theyre not perceptible day to day and I'm hoping you're right. As long as someone can definitively tell me that things are still changing, I can accept that... I think. Do you remember when you finally realized you were pretty much back to your old self? 

 

I came off Cymbalta November 2018, and I still have issues relating to it. I have twitches ever since - be in legs or whole body. Fortunately the seizures have more or less stopped. But yes, here I am 18 months off and still have issues left over from the Cymbalta. It is very embarrassing when I have a full body twitch in public or with someone who doesn't know of my medical history. But I just think that those people consider I have epilepsy or something, so it doesn't worry me too much. Just a right pain in the ass that it ever had to happen in the first place.

 

I am still on Citalopram, so I am not my "old self" entirely, and won't be until I come off them. That will be another 2 years at least.

 

I am taking the Hat school of thought. Slow, slow and then even slower.

[frog]

IUN how long did you have issues with the daily anxiety after coming off Cymbalta? I realize that's a very vague question. I guess I want to know when do you feel like you stopped experiencing daily waves of anxiety that seemingly rise up out of nowhere? A few weeks ago I had close to a week I'd say where the anxiety was noticeably low each day, and of course I thought I'm beating this!!! And now it's back as it was. Waking up most mornings already feeling a bit agitated, with the chest tightness and feeling of some kind of dread but I don't know what I'm dreading. The day I guess? lol

 

Sorry you're still dealing with twitches from Cymbalta and I can't believe it gave you seizures. That's crazy! But I guess I can't say I'm surprised since the cold turkey gave me daily panic attacks for months. Every now and again I'll get into an anxious state that starts turning into a panicked feeling where I get very very overheated, but I've gotten better at managing it by taking off layers, or drinking cold water, and doing the breathing.  

[invalidusername]

That is a difficult one because a lot of the anxiety came about as a result of physical problems with jelly legs, seizures, stomach pains etc, but the non-physical stuff lasted a good 4 months I'd say, but that morphed into the physical-based stuff, so I cannot say. If I didn't have the physical symptoms, would the mental anxiety still have been there? I cannot say.

 

Dread is exactly what kept coming back. You fear the day as soon as you wake. And this was the last to go, and was only not there when it was replaced with depression. 

 

Just to give you an idea of the seizures - they are EXACTLY like this poor girl;

 

[frog]

Yeah I get you. I have had a similar problem with all the IBS stuff that's come on since I stopped Cymbalta. It's given me extra anxiety for sure as soon as there's even a subconscious thought about if I'll ever be able to comfortably go on a hike without worrying or something like that. I'm taking some Imodium daily now to help steady the ship. My doc thinks that since the Imodium has been the only thing that's really helped it sounds like there's just a disconnect between how the nerves in my gut are firing when I eat (the problems generally start shortly after eating). I'm not really sure how you fix something like that other than medication that tells the nerves to keep quiet. I have an appt with a GI doctor but not for over 3 weeks. 

I'm hopeful that once I get on some medication that calms the gut things down for good, a chunk of this anxiety will naturally resolve itself. 

 

When did the dread feelings finally go away? 

 

The seizures seem frightening. My friend has had some unexplicable seizures, or something like it, start happening to her in the past few years and it sounds really really scary and while she's been able to finally figure out the right medication to stop them, they have yet to figure out what the root cause is. 

[invalidusername]

Really sounds like you are at a similar place that I was... and all the time there were physical problems, the dread would be there. 

 

Once I switched back to Citalopram, I then had headaches and dull pains in various places over my head. That went on for weeks - nothing helped. But I tried to drop from 30mg to 25mg and they went away! But I couldn't take the depression I had as a result. I wasn't ready to come off them. I still needed support.

 

So I then went to a homeopath thinking what else did I have to lose... she gave me a remedy and told me to stay with the 30mg and she will cure the head problems.... and she did. I worked with her for about 4-5 months and now I do not need the remedy and the 30mg Citalopram is fine - no more headaches. So next step is to start weening which I will again do with the aid of the same homeopath.

 

Does your friend lose consciousness during the seizures? If not, they will be these that I went through. Yes they are horrible and you shouldn't pin people down either during an attack. I have marks on my forehead where I cut myself on various pieces of furniture during episodes...

[frog]

I believe she did lose consciousness and pretty much all control of her body. 

 

Do you think going on another med is what made the anxiety and dread go away? I just hope that's not my only option and it'll go away on its own

[invalidusername]

If she lost consciousness then it needs looking into for sure. What I have are PNES, and whilst they are horrible when you are having them, and I cannot speak because my breathing is all over the place during an episode, there is no immediate issues neurologically speaking. This is why is remains a largely uncovered area as it doesn't pose a threat.

 

However, the scars on my head would suggest otherwise. 

 

The turning point for me was going back to the best of the 6 drugs I took, and then just sticking it out. The homeopath route was a shock. Being an academic, I was so skeptical of it working, and I was not expecting it to work at all, but having seen what occurred, I would never write it off as a possibility to others or myself in the future.

 

But just like Hat and myself suggest with supplementation, always seek out the best first time round to know if you will have a benefit. So I did that. The homeopath has a practice in Harley Street but fortunately did Skype sessions as there was no way you would have caught me going on the tube in London for an appointment at the time!!

[frog]

I think the L-theanine has maybe helped some. I've had less anxiety this past week. Or could just be the natural ups and downs of things... wish I could say for sure. There are definitely weeks where I feel like things are going in the right direction if I can just tweak a few more things into place (mainly the IBS) and then of course there are other weeks where I feel like I'm doomed to never get better than where I am now. 

 

IUN what are the visualizations you use to get back to sleep? Getting back to sleep isn't so much my problem as I typically sleep 7-8 hours per night so by the time I wake up I guess it's fine if my body doesn't want to sleep more. But in terms of falling asleep at all, I am lost without the Seroquel. I'm down to just 1 pill a night which is great, but I'm afraid to go any lower. Whenever I try to take a nap, say, no matter how relaxed or sleepy I feel in the moment, the second I close my eyes and lay my head down my brain starts going. Thinking thinking thinking. It's not even necessarily all bad and anxious thoughts (though they can be). Or sometimes I feel myself start to drift off only to get a little adrenaline jolt in my brain that wakes me up again. I'm guessing it's all part of the fight or flight system. Can't fall asleep in order to protect myself from a threat. The Seroquel helps bridge the gap and sedate my system enough to cross over the barrier. Maybe I should just stay where I am at 1 pill until the anxiety goes down even more and it'll naturally resolve itself, but I'm scared that I'll have insomnia like this forever. 

 

Last question, I think I'm done tapering Seroquel for now given the above. I wanted to start tapering the gabapentin instead as I'm not even sure it's having any effect i.e. I don't feel any different after taking it, so it seems like just another thing in my pill box. The question is, how do I do this? I take 3 capsules a night 100mg each. It's a powder inside. Any advice? Also do I need enteric capsules for gabapentin or just regular gelatin? 

[fishinghat]

Most Drs recommend 2 years between weaning off of multiple drugs. Weaning off gabapentin this soon could be asking for issues. 

 

For this dose I would recommend a 5 month wean. They do not use enteric coated capsules for gabapentin.

[frog]

I checked and the minimum effective dose for Gabapentin is like 3 times what I'm taking. I think most doctors would probably say I could just jump off this anytime. I'm obviously not going to do that just to be safe, but I feel ok about giving it a go as another step forward toward normalcy. 

 

Also I've actually done very well with the Seroquel drop so far even though I was expecting to have more problems. Sometimes it seemed like my anxiety went up a few days into a drop, but the last drop I did I had no issues, so it's hard to say if any of it was related. I'd love to just keep going with the Seroquel down to 0 but I'm not confident in my ability to sleep without it, so I'm giving it a rest, plus even dropping the dose by half feels like an accomplishment!

 

I'll have to see if our scale is sensitive enough to measure out the powder in each capsule, otherwise I'm not really sure how to proceed short of just eyeballing it

[fishinghat]

"...even dropping the dose by half feels like an accomplishment!"

 

This is very true!!

[invalidusername]

IUN what are the visualizations you use to get back to sleep? Getting back to sleep isn't so much my problem as I typically sleep 7-8 hours per night so by the time I wake up I guess it's fine if my body doesn't want to sleep more. But in terms of falling asleep at all, I am lost without the Seroquel. I'm down to just 1 pill a night which is great, but I'm afraid to go any lower. Whenever I try to take a nap, say, no matter how relaxed or sleepy I feel in the moment, the second I close my eyes and lay my head down my brain starts going. Thinking thinking thinking. It's not even necessarily all bad and anxious thoughts (though they can be). Or sometimes I feel myself start to drift off only to get a little adrenaline jolt in my brain that wakes me up again. I'm guessing it's all part of the fight or flight system. Can't fall asleep in order to protect myself from a threat. The Seroquel helps bridge the gap and sedate my system enough to cross over the barrier. Maybe I should just stay where I am at 1 pill until the anxiety goes down even more and it'll naturally resolve itself, but I'm scared that I'll have insomnia like this forever. 

 

Sounds like the non-movement hypnic jerks I used to get (and still do on occasion). It is for sure adrenaline. I used to get these as well as the hypnic jerks which were such a pain in the ass I can't tell you. 

 

If the 'quel works then keep going while you balance. I use Kratom whenever I have these issues now purely as I refuse to take medication unless absolutely necessary. But I used yoga nidra to help sleep. It is all about training to brain to focus away from everything that it shouldn't be thinking about, but it is very difficult and doesn't always work depending on the severity. But once given a fair trial, it works in a lot of cases, it just takes practice. 

[frog]

Just a little update: 

I'm still on the 1 pill of Seroquel. I feel like I might be on it for a while. I think I just still have too much inner anxiety and turmoil to be able to fall asleep. I'm proud of getting down to half my original dose and am hopeful that one day I won't need it at all. The good news is I'm still sleeping through the night. Most days I wake up at 7:30 regardless of when I go to sleep so that usually means 8 hours of sleep. No complaints there. Still miss taking naps though. 

 

I've moved on to getting off the gabapentin. I really did try to pull apart the capsule and figure out some day to weigh out the powder. It is literally impossible. It's SO fine that it sticks to the thing I pour it in and it just would never be precise anyway. From what I've read many doses are 6 or more times higher than mine. I'm about as low as I can go in dose as it is and they don't make the pills any smaller than 100mg unless I wanted to order cat or dog medication, which I do not. So I'm giving it a whirl to reduce by 100mg. Last night was my second time. So far it's been the same as always so fingers crossed! One less thing in the pill box <3

[invalidusername]

 One less thing in the pill box <3

 

Exactly how I am always thinking!! This is why I am praying that my high cholesterol isn't down to family genes, otherwise that will be an addition to the pill box

[frog]

Fingers crossed for you IUN. That's no fun