727 replies to this topic

[Mxpro32]

When I was having my last anxiety freak out I had to remind myself I would have been really anxious and stressed on the mess too. In fact any normal person would most likely react that way to a threat to their business. Likewise with all thats happening in the world right now. Everything seems in Flux and nothing feels safe or certain. The world is unrecognizable and thats distressing to everyone. We just picked a bad year to tackle withdrawal.

[frog]

When I was having my last anxiety freak out I had to remind myself I would have been really anxious and stressed on the mess too. In fact any normal person would most likely react that way to a threat to their business. Likewise with all thats happening in the world right now. Everything seems in Flux and nothing feels safe or certain. The world is unrecognizable and thats distressing to everyone. We just picked a bad year to tackle withdrawal.

 

That's exactly what I have to keep reminding myself of when I start to get filled with dread and anxiety. Life as we know it has completely flipped upside down and we're all reeling from it and there are still so many unknowns. And this has been going on for so long that the idea of going back to normal life seems a little frightening and unfamiliar now too. I've always been the most comfortable, safe and secure being at home and now that I'm spending more time here than ever before I think it has only deepened that sense of safety and comfort that I associate with it. I just have to keep remembering that when the time comes, being away from home will get more and more comfortable again like it once was. 

 

I agree it's been so complicated to have just been starting to get better from withdrawal when the pandemic hit. It made it seem like it's been one neverending withdrawal which has been demoralizing to say the least

 

@IUN

I've been on Effexor and Cymbalta. When I stopped Effexor (after a year) I had a couple of panic attacks and then felt better. When I stopped Cymbalta (after 5-6 years) I had panic attacks for 5 months. Before either of these medications I had never had a panic attack in my entire life. There's no way I'm trying my luck with any more SNRIs. They affect way too many of our systems for my liking. SSRIs definitely seem like the lesser of the two evils but I've never taken any

[invalidusername]

"The world is unrecognizable and thats distressing to everyone. We just picked a bad year to tackle withdrawal."

 

Excellent choice of words MX. I agree completely.

 

FROG... I admire you for your resiliance against the meds. You are right insomuch that they can mess us up big time. And it is not a case that you should always "suck it and see". I resisted for such a long time and the only reason I went on the damn things is because my sister told me to when she was working as a mental health nurse.

 

Now I see she was brainwashed like the rest of them (well a majority of them). Had I have given therapy a few more sessions, things would have been far better, but instead, I am now closing in on 15 years on the damn things. 

 

Like Hat, I am slowly coming off my benzos first, and then I will tackle the Citalopram. It will be a long ride, but I will get there.

 

Merry Christmas to you both! Hope you are finding some quiet in this crazy world....

[frog]

@IUN and FH hope you both had a pleasant and restful holiday season

[fishinghat]

Thank you frog. May God bless you and further heal you this year. Stay safe.

[invalidusername]

Ditto - many thanks. Bless you dear one....

[Lovey]

Just came along to say hi to everyone. We made it through the crazy holiday season woohoo! I'm in the midst of some depressive feelings and mood which is typical for me this time of year. No sun for at least 5 days now. I think I'm going to go to a tanning bed and daydream I'm in the tropics. I need the UV bad! My Dr. Found my vitamin D level very low and prescribed 50,000 unit gelcaps to be taken once a week. Isn't that too high?? Yes fifty thousand!

I finally got Christmas packed away and vacuumed and laundry too. Busy day. Plenty of downtime too. Xo

[fishinghat]

Hi Lovey. It sounds like you are hanging in there. that is good.

 

That vitamin D should help get rid of the depressive mood. There is a lot of arguments about how much vitamin D should be taken to even maintain normal levels let alone if you levels are low. I have seen some research that suggests 4,000 to 7,000 per week and some that suggest as high as 28,000 per week. The main thing here is to retest your levels in a couple weeks and adjust the dosage as necessary. 

 

I hope you have a happy and safe new year.

[Lovey]

Thx fh. I'm gonna try it tomorrow a.m. it's so high at 50,000 but ,my body will just expell whatever it doesn't need so I don't think there's anything to be too worried about I was just being super cautious cuz it was such a crazy high number but it's just a vitamin and it's once a week so I'm going to go ahead and do it. Have you been doing yeah I'm hanging in there It's tough but one day at a time I've got some very good therapists and we're at the nitty gritty so it's really intense really painful and exactly what I need... I'm adding in more time with friends and fun stuff to create positive things and balance for myself I've been making lots of artwork which is great writing some poetry and cleaning and organizing all things that make me happy:)

[fishinghat]

FYI

 

 

Vitamin D toxicity is on the increase due to over use/overdose of Vitamin D. Currently Vitamin D supplementation is very popular and routine levels of your vitamin D should be performed if you are taking the supplements. The main consequence of vitamin D toxicity is a buildup of calcium in your blood (hypercalcemia), which can cause nausea and vomiting, weakness, and frequent urination. Symptoms might progress to bone pain and kidney problems, such as the formation of calcium stones. Mayo

[Lovey]

How often should I get blood work?

[fishinghat]

That is something you need to discuss with your dr as it depends on how low you were on vitamin D as well as age, weight, how much sunlight exposure you get and other variables.

[Lovey]

Thanks hatman!

[invalidusername]

Just seen this - and why have we not thought of this name before!! Love it...

 

So is there a Hatmobile? a Hat signal? Does Hat have his own butler? LOL

 

I always thought he had a secret identity...

[fishinghat]

Oh i wish I had my own butler. I could sure keep him busy around the house. My hatsignal is a fish in the sky.

 

P.S. - Is it spring yet?

[invalidusername]

P.S. - Is it spring yet?

 

Rarely does a day go by when I do not think of our beloved Gail...

[frog]

Sorry for the TMI in advance.

 

After having all those gastro issues related to the withdrawal for months I finally had settled into a routine of taking some Citrucel fiber pills in the AM and PM and taking 1/4 of an Imodium pill every night. This combo calmed things down completely which has been a huge relief, but I kept veering into constipation territory (presumably from the Imodium). I wanted to try eliminating the Imodium completely (since I was on so little anyway) to see if maybe things had healed up and would be ok on their own. This was about a week ago. 

 

The vicious diarrhea hasn't come back, but I have to use the bathroom several times before noon and things are definitely looser than I'd hoped. 

 

I'm going to give it another week or two to see what happens, but can I expect things to improve if I give it a little more time? I was wondering if long term Imodium can have some kind of rebound effect or almost like a small withdrawal as the guts readjust to not being chemically frozen all the time. 

 

I'll go back on the Imodium if I have to. It's certainly worth it for the peace of mind but the constipation is not very fun

[invalidusername]

You poor thing... the GI stuff is not my forte - this is more Hat's territory so I am not much use.

 

The problem with long term use of such meds is that they are always used short-term, so long-term issues have not been the case of much investigation, but I would imagine that there would be something akin to a "withdrawal" as your system will have lever out its flora and fauna. 

[frog]

All doctors I had spoken to say Imodium is perfectly safe to use long term but I guess this is less a question of safety and more a question of whether the body gets used to it over time. No one's mentioned anything like that before and I wasn't able to find much online about people using Imodium daily for extended time. Every time I dropped the amount of Imodium (1 pill to 1/2 to 1/4) I feel like there was some window of adjustment when things were looser (which of course made me anxious because it was pretty triggering, oh my). Then it would level off and go back to being a bit constipated. Hopeful that this follows the same trend, but of course now that I'm on 0 Imodium I feel a bit more.. vulnerable?

 

I'm generally in a phase where I'm trying to see if my systems are coming around back to normal one by one. After the gut stuff, the last remaining offender is the insomnia. I've still had 0 luck falling asleep for a nap during the day, so I'm not terribly optimistic but maybe it'll be similar to the gut stuff (if it works out). My body has become accustomed to falling asleep by way of sedation (Seroquel) and needs to "relearn" how to turn off for sleep on its own. Hoping that with extra good sleep hygiene and some melatonin I could have a breakthrough! But that's to come later. 

 

One thing I did definitely want to note, to add to your ebook perhaps IUN, is that L-theanine has been absolutely life changing for me. 100mg AM and 100mg PM. All the post-withdrawal anxiety is almost completely gone and so is the chest tightness/difficulty breathing. Chicken or the egg I suppose on which one of those two was causing which but the point is that I feel practically like my normal self again. I think if the pandemic was over I would be feeling even better. 

 

Hope all is well with everyone

[fishinghat]

Hi frog. I am not aware of any long term effects from Imodium but will look into that and let you know what I find. I know that Milk of Magnesia (can off set the effects of Imodium BUT it can be over done and put you back in diarrhea again plus it interferes with medicine absorption. My recommendation would be to tale a good soluble fiber product that does not contain sugar or artificial sweeteners. Artificial sweeteners like Aspartame, Stevia and Saccharin can upset the stomach of quite a few people. 

 

Citrucel capsules contain methylcellulose (the fiber source) as well as  Crospovidone, dibasic calcium phosphate, FD&C yellow no. 6 aluminum lake, magnesium stearate, maltodextrin, povidone, sodium lauryl sulfate. Crospovidone is a manmade plastic that can absorb water and therefore helps control diarrhea. Dibasic calcium phosphate, like most calcium compounds also helps control diarrhea. FD&C yellow no. 6 aluminum lake (see below).

 

FD&C yellow no. 6 aluminum lake

• Reported side effects of FD&C Yellow #6 include gastric upset, hives, runny nose, allergies, hyperactivity, tumors in animals, mood swings, and headache. It is banned in Norway and Finland.

Maltodextrin

• Blood sugar spikes
• False glucose readings
• Stomach irritation due to imbalance in stomach bacteria
• Chronic inflammatory disease due to compromised immunity
• Weight gain.

Povidone

An iodine containing compound that can cause iodine poisoning, hypothyroidism, weight gain and loss of gastric bacteria balance. Not normally recommended for oral use.  

 

Sodium lauryl sulfate

May contain 1,4-dioxane, a very strong cancer causing agent.

Some products containing SLES have been found to also contain traces (up to 279 ppm) of 1,4-dioxane; this is formed as a by-product during the ethoxylation step of its synthesis. The U.S. Food and Drug Administration recommends that these levels be monitored. The U.S. Environmental Protection Agency classifies 1,4-dioxane to be a probable human carcinogen (not observed in epidemiological studies of workers using the compound, but resulting in more cancer cases in controlled animal studies), and a known irritant with a no-observed-adverse-effects level of 400 milligrams per cubic meter at concentrations significantly higher than those found in commercial products. Under Proposition 65, 1,4-dioxane is classified in the U.S. state of California to cause cancer. The FDA encourages manufacturers to remove 1,4-dioxane, though it is not required by federal law.

http://www.ncbi.nlm....pubmed/11417628

 

One of the key problems with fiber capsules is that they contain such small quantities of fiber. The bulk of the Citrucel capsules only contain 500 mg (0.5 grams) of fiber while most people require an additional 5 to 15 mg of fiber to obtain steady bowel movements. This would require 10 to 30 capsules a day. The most effective is fiber drinks which can provide larger doses easily. Many contain Psyllium, oat fiber or other natural soluble fibers with no added ingredients. 

 

Note - Remember to start with a low dose of fiber first and then work your way up slowly so as to give your body a chance to adapt to the increase in fiber. Taking too much fiber too quickly can cause bloating.

[fishinghat]

There have been many long term side effect studies done on Imodium. At recommended or lower doses the most severe risk is developing constipation but cessation of the product usually corrects the issue. Usage over the recommended dose can cause a number of serious side effects with time. References available.

[frog]

I tried the powder Citrucel before I did the pills. It's just... disgusting. And it's really hard to gulp down that much water first thing in the morning LOL

 

This does bring up a bigger question though that I didn't really realize about how little fiber is really in these caps. The whole fiber thing is VERY confusing. You need about 20g of fiber a day but it's not really defined as soluble vs insoluble? My understanding is that if you have issues with diarrhea you should minimize the insoluble fiber, hence the Citrucel. But I'm only really taking about 3g of Citrucel fiber a day. A bowl of oatmeal in the mornings is probably another 3-4g which leaves me at 6g LOL I guess I need to look for other sources to add more. 

 

Being on the Imodium was nice though. I could pretty much eat whatever I wanted, but hoping I can make it work without it

[fishinghat]

I am a pretty good sized guy and for my height and weight I should have around 25 to 30 grams of fiber. I take 10 grams a day of one of those yucky fiber powders in 8 oz of water. I have been able to flavor it with lemon juice which helps a lot. There are a lot of flavored powdered fiber out there but most contain aspartame or stevia and both do a job on my stomach. I have to admit it does taste like powdered cardboard but it does help. Your right, soluble fiber for diarrhea. My wife makes me some whole wheat bread and puts the fiber in the bread. She flavors the bread with vanilla and that is really good. It takes a lot of playing around to figure out how much of what type fiber works for an individual. Slow but steady wins the race.

[invalidusername]

it does taste like powdered cardboard...

 

You've tried this recipe?!

 

The bread sounds like a great idea. Far better to make these things where you can. 

 

I really feel for you Frog. It is enough to have to have the problem itself without having to come up with the solution at the same time. How are you doing now?

[frog]

Gut stuff really sucks because it takes way too much dedication and time and effort to try to figure out what you're 'sensitive' to. I truly don't know how people do it. I've been able to stay off the Imodium for nearly 3 weeks now and have had few to no issues this week. Bowel movements are definitely not as predictable as I would like them to be to feel confident and secure, but I think the good news is that I'm no longer having to run to the bathroom after EVERY SINGLE THING I eat. Now it seems more tied to specific foods. I think raw greens are not in the cards. I didn't really have the guts for them even before all this so I guess it makes sense. 

 

I bought a new probiotic from this online company Seed to try out. Pretty expensive but it has 24 different strains in it and they have just been approved by the FDA to begin a study into gut microbiomes and whether their unique product really helps for IBS, so I like where their head's at. 

 

Will see what happens. Hoping I can stay off Imodium for good.

 

In another month or so I want to try kicking the Seroquel to the curb too! This will be much harder...

[fishinghat]

Frog, have you ever tried insoluble fiber?

[frog]

Only soluble - Citrucel.

I've read that insoluble is not advisable for diarrhea

[fishinghat]

One of the common digestive problems associated with stress is irritable bowel syndrome with diarrhea (IBSD). Drs frequently recommend insoluble fiber for that. Part of the confusion is that soluble fiber seems to help best if the diarrhea is not stress related.  Obviously you have read enough about this subject to know it is very hotly debated. There is so many variables involved it is hard to tell what is the best for one specific person. I can tell you that all it takes is 20 to 35 grams of insoluble fiber for 4 to 6 days to tell if it will help. The best is wheat bran and it has really helped my IBS for sure. Something to think about. 

[frog]

I haven't seen much about stress related vs not to be honest. My doc recommended Citrucel/soluble fiber because it absorbs water which makes sense for diarrhea. Insoluble fiber seems counterintuitive but who really knows. Obviously for a healthy person you want both fibers to keep things regular. Science really knows SO LITTLE about our guts though. Even the idea of the brain gut connection is quite new. Very curious how all this research will evolve over the next... decade even. So many people struggle with gut health. Could be pretty revolutionary stuff!

[frog]

Just checking in, in case someone else ever reads this thread eventually. I remember when I first started down this journey I had a hard time finding posts that described how things were 1 year+ post withdrawal since presumably you stop checking in once you feel better

 

Just to summarize: My withdrawal started in Nov 2019 and was really really bad for many months. I obviously had a really nasty reaction to adrenaline at a time when my stopgap (Cymbalta) was taken away somewhat suddenly. My CBT-I doc said that when you take ADs, your brain responds by creating more synapses, creating new connections and pathways in your brain, etc. and it takes a while for those things to die off when you discontinue which is why it's so important to taper down slowly and allow some time for things to catch up. 

 

Anyway about 5 months out from 11/19 the panic attacks FINALLY stopped. Panic attacks had never been part of my anxiety journey before taking SNRIs so I do believe taking them has caused an increased sensitivity to adrenaline or something like that but fingers crossed that maybe it'll continue to taper down back to my pre-SNRI normal. Earlier this year the chest tightness I had had for all of 2020 following withdrawal also magically disappeared overnight. 

 

Essentially I think everything I'm dealing with now is just a consequence of how traumatic the withdrawal was:

• Insomnia, because I had so many sleepless nights during withdrawal that I became extremely aware of sleep
• Anxiety and panic about not feeling in control in situations where I may not have a bathroom easily available, because I had nonstop diarrhea during withdrawal. My gut is pretty much normal now but I still can't stop focusing and overanalyzing it in some sick effort to try to protect myself by anticipating a bathroom problem when I'm away from my home
• Fear of fear/panic/discomfort. I was so traumatized by my emotional state during the many months of withdrawal that I still have tremendous apprehension and fear over experiencing those things. For example, I haven't gotten on a flight in almost 2 years now. I used to travel a good amount and always looked forward to it. The airport always stresses me out but once I'm through security and on the flight I'm ok. Now I'm absolutely DREADING travel. I'm so scared of getting panicked as I'm leaving the house or en route that I can't bring myself to book a flight across the country to go see my family. I keep putting it off saying well maybe by the end of the year I'll be ok with it, maybe next year enough time will have passed and I won't be scared anymore. But I think the reality is that first trip is going to be scary no matter what and maybe I just need to break the seal and push through it.

So some updates on how I've been tackling the above:

• Insomnia - I've been seeing a CBT-I doc who has given me a lot of information about sleep and some tips and tricks to help me tackle getting off Seroquel for good, mainly around working on taking pressure off sleep, not thinking about it so much and distracting my brain when it starts to get carried away. I'm on the tiniest amount of Seroquel which doesn't actually require any type of taper but due to my habituation to it I'm tapering to give myself a chance to acclimate. I started tapering a week ago and have been taking 3/4 of a pill every night. The first night was rough due to a lot of anxiety about the process but I'm back to sleeping 7+ hours a night every night since. Tomorrow night I will go down to 1/2 a pill and so on. 
• Gut stuff - this is still plaguing me. I want to go back to pre-withdrawal life where I spent 0% of my time thinking about my bowels. Maybe I will end up seeking out a CBT specialist to provide some guidance just like I did with sleep. I think I may just need some support and help in ending the fixation on my gut. 
• Fear of fear / travel fear - Next weekend my husband and I are driving to Santa Barbara (about 4 hours) for a little R&R weekend which I think is a good small step to getting comfortable again with traveling. And I want to plan another trip with a short flight in July to get my feet wet with the whole airport / being stuck in a plane thing. And work my way up to a 5+ hour flight to Florida over the summer. And just accept that it'll be scary going to the airport but that once I get there I will be ok. Maybe I can take some propranolol to help mitigate the panicking too

Anyway that's all I got! Overall I'm doing pretty well. This last stuff I think is all mental now and something my brain learned to do during withdrawal to protect me but is no longer valuable to me now and if I can find good coping skills that work for me I will be ok