Sottana: Paxil withdrawal - questions and concerns

[ChessieCat]

10 hours ago, Adili13 said:

I did eat a large meal of Chinese food the day before the dosing change.

 

MSG is a neurotoxin.  That is the most likely explanation for the issue/s.  I've had severe MSG intolerance in the long distant past (pre ADs and WD) when I got hooked on eating Sour Cream and Chive Pringles.  At it's worst I was experiencing anaphylaxis and couldn't even tolerate natural glutamates.  I can now eat natural glutamates as long as I don't overdo them and and steer clear of all flavour enhancers.

 

chinese-food-and-msg

 

 

Edited August 12, 2020 by ChessieCat

[ChessieCat]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2802046/

 

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Monosodium glutamate (MSG), a common flavor enhancer in various canned food and stereotypically associated with food in Chinese restaurants, has been claimed and tested to have side effects including headache and dizziness.

 

 

https://www.curevertigonow.com/vertigo-triggers/

 

Quote

 

Once an individual has consumed products with MSG, vertigo can arise

 

 

https://everydaysimplicity.blogspot.com/2007/10/have-you-had-bad-reaction-to-msg.html

 

Quote

 

Also called "Chinese Restaurant Syndrome," reactions to MSG can range from feelings of nausea to migranes, dizziness, and heart palpitations. It can trigger asthmatic attacks. And, it's not a quick response/recovery: it takes a good couple of days to bounce back from an MSG reaction according to the University of Illinois Medical Center.

 

 

Edited August 12, 2020 by ChessieCat

[Sottana]

@ChessieCat wow, that’s incredible. At least I know to stay away from that stuff like it’s the plague! So good of you to ask about MSG. I think it had to of been a contributing factor. 

 

@Colonial yeah, seems based on all the stuff chessie is saying, MSG is a mike likely culprit! So crazy! 
 

@sunnysideup69 Pretty wild, eh?? 

[Sottana]

I’ve decided I’ll slowly taper to 15 mg (over about 3 months) and do an extended hold from there. I’ll finally be able to just be on a solid pill and a half. Symptoms just haven’t been improving and I want to eliminate the variable of dose fluctuations from doing my own liquid for a time. Anyone out there to wish me luck? I feel very afraid. 

[Hanna72]

Hi @Sottana

I am here to support you and tell you that you will be ok. I know it is scary I have been there myself 

The thoughts in our mind tell us all kind of stories, don’t follow that, instead follow your heart. 
You are on this site because you know already that you can do it. 
Slowly and surely is key.

I am rooting for you on the sideline 💪

One day at a time🙏

Best wishes to you 

[Sottana]

Thank you, Hannah. What a beautiful and perfect message. It's exactly what I needed to hear. <33333

@Hanna72

[wantrelief]

Hi Adili - I understand how scary it can be to taper under less than ideal circumstances.  It takes a lot of courage to restart a taper.  I am rooting for you!

[Sottana]

@wantrelief I appreciate you and your encouragement!! 

[sunnysideup69]

22 hours ago, Adili13 said:

I’ve decided I’ll slowly taper to 15 mg (over about 3 months) and do an extended hold from there. I’ll finally be able to just be on a solid pill and a half. Symptoms just haven’t been improving and I want to eliminate the variable of dose fluctuations from doing my own liquid for a time. Anyone out there to wish me luck? I feel very afraid. 

Go you! Am rooting for you. Yes, this will at least eliminate the thought of 'what if I'm not getting my dose correct?'

 

Wouldn't it be great, also, if reducing helps you to feel better?

[Sottana]

@sunnysideup69 you’re so right! Thanks for always being positive and a good friend!! Xxxx

[Longroadhome]

@Sottana

 

my fingers are crossed and wishing you all the luck in the world . 
it not easy deciding which route to take . 
hold, taper Etc 

you’ve done good holding for so long so maybe it is time to try a small taper as you say 

we’re here for you and shouting you on from the side lines !!! 
“with you all the way Adili”  ☘️ 

 

[Sottana]

@Longroadhome I appreciate you. I’m very afraid but feel this is what I need to do! Thanks for rooting for me xxxx. Always appreciate your comments. 

[Longroadhome]

Your welcome Adili 

one day my friend we will have the sun shining by our names  on here 
and oh how we will celebrate 🎊 🎉 Xx 

[Colonial]

On 8/17/2020 at 2:10 AM, Adili13 said:

I’ve decided I’ll slowly taper to 15 mg (over about 3 months) and do an extended hold from there. I’ll finally be able to just be on a solid pill and a half. Symptoms just haven’t been improving and I want to eliminate the variable of dose fluctuations from doing my own liquid for a time. Anyone out there to wish me luck? I feel very afraid. 

 

Ah, your making your own liquid from the pills then?  For some reason I thought you were on the pharmaceutical liquid like myself.

That was the only reason I could cut my daily dose into 3rds and take it every 8 hours, that would be quite difficult in Your position. 

 

I see you started the drop, 17th and 24th, how is it going so far?

Thinking of you.  Have a great weekend.  Glad you found us. 😎

[Sottana]

@Colonial yep, been on my own liquid for about 1.5 years now. It’s going ok. No too different than before. Still a lot of symptoms but it is what it is. I’ll give my brain another break at 15  Happy to be here,, neighbor! 

[Sottana]

On 8/18/2020 at 1:00 PM, Longroadhome said:

Your welcome Adili 

one day my friend we will have the sun shining by our names  on here 
and oh how we will celebrate 🎊 🎉 Xx 

@Longroadhome not sure how I missed this, but yes! I’d be honored to celebrate with you, good friend!

[Heath]

@Sottana I just wanted to say Like you that msg has bothered me more in the last 10 years headaches and dizziness so I do my best to not over do it and avoid it when I can. And tapering these ssris we don’t need something else rocking the boat!  Glad you are here! SA website has been a lifesaver for me! Hope you are doing well Hang in there !

[sunnysideup69]

Well done @Sottana, good that symptoms are not too different, if I'm understanding you correctly. Also, good to stop at 15 for a break, also then you'll not have to worry about dosing correctly. Onwards and upwards, my friend!

[Sottana]

@Heath yes, no more msg for me! Or at least I’ll try to avoid it at all costs!

 

@sunnysideup69 yep, you understand my plan correctly! Seems my ocd has no bounds, though, as I’m now worried about splitting my pills and getting “the perfect split” when I get to 15. Talking to @puthappinessfirst and realizing I’m going to have to let all that stuff go. No taper is perfect and we have to try and settle with what we have. How are you doing? 

[Colonial]

 

Have you thought about switching to the actual liquid manufactured by Glaxo Smith Kline? Dosing it with a syringe is very easy and there's no worrying about whether your mixing it properly and getting the proper dosage which is a concern for many meds that unfortunately do not come in liquid suspension.

 

I don't know what your insurance situation is, but if your doctor writes it as medically necessary , insurance in your state must comply.

If your issue is uninsured, the manufacturer will work with you to get you what you need, they would rather do that than have bad publicity.

The fact that in 2020 in NJ there is still NO generic of Paxil allowed and a months liquid is still over $400.00 should tell us all something about this med, both how dangerous it is and how much they have to give away free to people in our situations who loose insurance and can't survive without it due to the symptoms, etc.

 

I realize it's impossible to know how much of your symptoms could possibly be from not getting your dosages as close to what they should be and the accidental yo-yoing in your brain because of it,  but the liquid suspension is readily available in your area, and would eliminate that part of the issue from your list of possible reasons why your having so much trouble and help with the OCD.  Different size syringes are available to help lower the dosage drop when you get down to lower levels, I'm down to the 0.3 ml syringe.

 

Albeit, you could still be having issues from coming off the Lamactil so relatively fast and, in withdrawal terms, so recently as well which may have exacerbated the reason you had the severe crash at 18mgs, It's hard to tell. I realize it's one more thing to "worry about" decision wise, but I think that and still eventually working on splitting your dosages further out would, in the long run, provide much more relief to a great part of your difficulty.

 

Enjoy the weekend , my friend!

 

 

Edited August 28, 2020 by Colonial

[Heath]

Yes agree with @Colonial I just converted to liquid. I never have tried mixing the liquid but I know it took all the worry and guess work out of pills. I’m more confident with the liquid now. More precise. I don’t fear changing dose as much now. My dr wouldn’t write medical necessity for me but luckily my insurance pays for liquid or pills. If your dr is on your side with tapering he will do this. But it is a possibility that like me your insurance will cover. 

[Sottana]

@Colonial @Heath So, my plan was actually to taper down to 15 mg so I’m on a pill and a half and my dose variation decrease immensely. Once I was stable on the actual solid pill, I was prepared to ask my doc about the liquid. I’m just afraid of too many changes while still symptomatic like I am (which i a change to regular Paxil would be) as I’m on a suspension from paroxetine. Once I get to 15 and feel settled there, that’s certainly an option, if my insurance abides. Thanks guys! 

[Colonial]

Too many changes at once is not good, I agree.  That sounds like a prudent plan.  My main concern for you was the pill cutting once you tried to drop below certain levels. 

There MAY be some symptomatic changes changing from the pill to the liquid, so you may not want to drop the dose further at the same time your switching to the liquid and or split dosing if you choose to go that route, since putting med back into your brain when its not used to having it for so long may cause some changes, but over all I'm confident you will do well.  You have always been very prudent and positively motivated, and that goes a long way.

 

 

[Sottana]

@Colonial so, the main reason I want yo get to 15 is one, it’ll be more accurate as it’s just a pill and half a pill and my pills are scored for accuracy, and 2 I’m very sick of drawing up and measuring a liquid every day. I want to take a nice break from being a chemist while I work on stabilizing. I know the pharmacy liquid is easier than what I’m doing, but it still involves measuring and delicate hand work. I just want away from the liquid for a time on a solid dose while I build my confidence back and my brain stabilizes.

[Colonial]

Understood.  The mental stress of making my own laboratory formula was the reason I stayed clear of that, my confidence level in "making" my own measured dose was too stressful and then I wouldn't ever know:  "Is it I'm dropping too much too fast, or am I getting too much one dose and not enough the next?  Even when I got down to the end of my Wellbutrin taper, the last I felt dosing myself was 1/4th of a pill per day. 

 

Once I had to drop below that, I switched to a compounding pharmacy for a few years.  That is an option too, depending on your insurance.  My insurance paid for the pharmacy to make capsules filled with whatever EXACT dose of Wellbutrin my doctor called in since their was no way He was going to give me authority to be dissolving pills in liquid, and if you look at my signature chart was when I dropped BELOW 18.5, Which was 1/4th of the 75 mg tablet. It was 2.5 years getting off the last 12.5 mgs compounded.

 

As you know, state drug regulations in NJ tend to really keep an eye on the physician to avoid things that others are allowed to do elsewhere, so most insurance pays for compounding and the like. Each state is a bit different even if the insurance is Medicaid or Medicare, and each medical group has their own legal protocols of what they will or won't do.

[Sottana]

@Colonial yes, once I get to 15 and hold there a good long time, I’ll definitely want to switch over to pharmacy liquid if possible. Measuring my own liquid has been a total pain. That being said, I plan on  holding for a significant amount of time on 15 mg solid pills, so not even something I need to worry about too deeply for now. Down the line, it’ll be something I need to think about though. 

[sunnysideup69]

How are ya, @Sottana? How's the taper treating you? Sending good wishes your way xxx

[Sottana]

@sunnysideup69 it's ok, i just got to 16 mg this morning from 16.9. It definitely hasn't been easy! exhaustion, severe acid reflux, depression and some other stuff all on the rise. I just have to get to 15 for now though. How are you, friend? xxx

[sunnysideup69]

21 hours ago, Adili13 said:

@sunnysideup69 it's ok, i just got to 16 mg this morning from 16.9. It definitely hasn't been easy! exhaustion, severe acid reflux, depression and some other stuff all on the rise. I just have to get to 15 for now though. How are you, friend? xxx

Good on you for going down, even though it's tricky. Eventually you'll be at 15mg. Woohoo! I'm ok, pal. Bit flat today....the reality of having gone back to work has hit and I'm knackered, plus I had a sugar binge at the weekend...and lots of wheaty stuff. Cleaning up my diet now, though. Mostly okay though.

[Sottana]

@sunnysideup69 I have my slip-ups with my diet too, but we really have to be as careful as possible. I find every slip-up is a stark reminder to try my best to eat well. On the other hand, eating well every day can get pretty boring, so I totally get it haha

[Sottana]

Can’t tell if this is an insane WD thought or legitimate at all. I used hand sanitizer yesterday and have been going down an ocd spiral about alcohol absorption through the skin and that somehow affecting WD. Surely, it’s due to my reaction to cooking with wine many months ago. That trauma has me worrying about it all again. The reasonable side of me is telling myself a small amount of hand sanitizer used on my only on the skin is totally different than actually ingesting some cooked wine, but I’m having a tough time breaking this thought loop. Just venting I guess. 

[Hanna72]

@Sottana

On 9/16/2020 at 4:42 AM, Adili13 said:

Can’t tell if this is an insane WD thought or legitimate at all

I can totally relate. We become so aware of our own thoughts and bodies that we want to do everything that we possibly can to ease our process. I think it’s normal, as long as we don’t over analyse everything, which can be tricky at times 😅

All the best to you

[Colonial]

When I was in the worst of my WD's when things were hitting me hard and fast in the beginning before I knew it wouldn't kill me and before I really learned coping skills, every single thing just like that could become a "what if".  Because in reality, it could.  Until You know your patterns which, unfortunately is just time and trial and error, it's hard to know what is really just the regular WD and when it is that you've done something to make it worse, and when is it just coincidence.

 

So then You sit around, like you say, almost scared to live life because your entire system is barely holding on.  What many people who get through the worst of it will tell you, is that, ironically, the "fight or flight" adrenaline of worrying about the "what ifs" is what makes more symptoms.  The best advice I could say, would be just to make a notebook of anything new out of the ordinary you do:  change deodorant, shampoo, try a different food, etc.  Then, you can forget about it.  Because now you have a log of all the little changes you made that, if you have a symptom spike that doesn't seem normal, you can go back to your notebook, come in here and say:  "Anybody have spike of symptoms after "such and such".

 

It's sounds, in theory, like your being MORE OCD, But unreality, it lets you stop worrying about it, because you don't have to keep every detail in your head, so you free your thoughts to non WD related issues, that drops your cortisol, and you break the "mind-thought-symptom loop" that you rightly remark upon not being helpful. It's really just a tiny bit more work than a symptom chart, but it really helps pin things down.  For as what happened, you only mentioned cooking with the alcohol by accident, if you had had that on a chart when you first started to spike, "we" as a group could have nailed that down a lot quicker.

 

Good to see ya buddy! Happy Autumn.  Good Lord it was 45 degrees last night! 😎

 

Oh! And also, the brain changes that happen this time of year, as your brain kinda goes into hibernation has always been a rough time for people, so be gentle with yourself.  Where we are in the Latitude- longitude I find for me it starts end of August through early October, about 6 weeks, and then another spike about March 10th to Mid April when the brain starts to "re fire up" out of hibernation.  I will have a spike I symptoms those 6 weeks for just the brain coming in and out of hibernation. It happens a little earlier in the year than you think is spring or autumn, because its when the brain actually starts making those tiny changes that can set us off, most people don't notice the difference until mid October or May when the brain changes are complete and all of a sudden their SAD kicks in end of October or all of a sudden their happy one day mid May.

 

It started for me this year Aug. 24th, right on schedule.  The interesting thing I've found is the SOONER I can get freezing temp air in my LUNGS, the sooner it rights itself, so I've learned to go out for walks at night when its super cold.  Strange, right? Who would think freezing air would settle your Autumn induced Neurological symptoms. I'm not saying it will do that for anyone else, but keeping good notes helps with finding GOOD patterns that work for You as well as what to avoid, which freezes your mind to not have to obsess constantly over what do I do to make it better.

 

 

 

Edited September 16, 2020 by Colonial

[Sottana]

@Hanna72 @Colonial yeah, it seems like I’m always finding something new to be totally worried about. I’m ridiculously still worrying about hand sanitizer I used yesterday. I think keeping some notes on how I react to things is a good idea, colonial. Also, totally agree about getting cold air in the lungs, it has to be beneficial. Thanks to you bothXxx

[Erell]

Dear Adili,

 

I smiled while reading your post : not because I was making fun of you, but because I recognised myself so much ! 

☺

 

Discovering how sensitized our CNS are now can be quite a shock, and we wanna make sure we do our best to help our brain.

 

I think Colonial gave you the best advice : put the details of your day in your dailylog and then go on with your life.

Then you can have a look to a few consécutive days and see if regular patterns occur.

 

It can help to notice if certain things trigger symptoms, but it also can help to notice the unpredictable aspect of the process.

 

Hope your day will give you some relief ☀️

 

[Sottana]

@Erell Haha, there is a comfort in knowing your thinking is similar to someone else’s, even if that thinking is wry difficult. I totally get it. I think you’re so right. I really have to keep a log, especially when I try new things/have new experiences that could potentially make things worse or better. I hope you have a day with less symptoms than yesterday! To further healing!