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This is probably ridiculous, but I noticed an expensive shampoo I was using had ingredients that were listed as common chemical names for MSG. I stopped using it, because I felt bad and figured it couldn't hurt to cut out everything. Around that time, I went into a long window and forgot about it. I started using this shampoo two days ago and yesterday I could feel a wave coming on. It got worse today. Has anyone experienced this or am I just trying to make connections that aren't actually there?
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At about 13 months out I started reacting very strongly to MSG. I am unable to eat it or I get a terrible wheezing cough and I'm unable to breathe. So, I imagine that it could be a problem even in a shampoo. Hugs!

 

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Wow, thank you for your response! It is shocking that sensitivities were so strong for you that far out, but I don't doubt it. I have been somewhat sensitive to glutamate since probably shortly after acute, but I am most definitely in the sensitivity stage now. I have felt better (far from recovered, but much better) for almost 2 months now, but am really starting to notice my reaction to things. I ate a dark chocolate chip cookie recently and it ruined my day. My "waves" lately are pretty consistent, dizziness, extreme fatigue and gasping for air. They are also usually pretty short (hours to a day or so). It took me a bit to connect the dots on the shampoo, but I woke up feeling fine, took a shower, and shortly thereafter I was for sure in a wave. I now see the shampoo has hydrolyzed soy protein and hydrolyzed vegetable protein pg-propylsilanetriol fairly high up on the list of ingredients.
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You're welcome. It's a good thing that you can figure it out and do well with I doubt it. I still suffer quite a bit most of the time. But I just do even worse with MSG. Good idea to figure out what your triggers are and avoid them until you're more healed. Sugar and gluten can be big for some people. What did you take and how far out are you? Hugs!

 

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I was on Xanax for 25 years. (a very long time, I know! :)) Things have been going pretty good for me for a bit now at 9 months, until this incident. I see others reporting that they end up getting slammed with a wave around 10-11 and I highly doubt it will be straight up from here for me, but I try to stay positive. Gluten seems to be somewhat of a problem for me, but not so much as heavily processed gluten foods. Sugar is not as bad as I would have thought, although an extreme amount makes me feel somewhat worse. Lately, chocolate is a big one for me, so I try to avoid it. The safest option for me is to stick to whole foods, primarily just chicken, vegetables, and some rice. It's really tough to do long term though...
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Did you do a taper or cold turkey, and what was your dosage? It's good you're doing that well at nine months out. I think that's a positive. And it sounds like your diet is a good choice but I know what you mean it's not easy to stick with it.
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Ah sorry, I forgot to include that. I averaged 1.5mg/day for most of the time and tapered for 2.5 months. If I could go back in time, I would have tapered for much longer. I also drank moderately and daily for a very long time, including through taper and for some time after I jumped. I realized through advice on BB and my own experience that I wouldn't recover very quickly by keeping that up, so I stopped drinking completely at the end of last year. I started seeing significant progress after that. I started to experience moments of incredible clarity. I call it seeing the world in 8k. It is amazing to wake up after three decades of a dimmed world. Those moments turned into days and now are all the time.

 

Recovery is still pretty scary for me though, even though I think I am 100% convinced all of the bad stuff is part of healing. It seems like there is a surprise around every corner these days. Sometimes I think I'm on the home stretch, but then I realize I was on that poison longer than most.

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Wow! Sounds like you're doing really well considering all that. I was wondering because the xanex is what I had used off and on for 25 years. I would go times without taking it at all and only used a .25 or half of that. Until 2020 where I took about a mg a day for 5 weeks and really flared me up badly. I knew I had to stop. I went cold turkey not knowing anything because the doctor that prescribed it for me said it was fine. Went and had some flumazenil treatments and was doing quite well and then the doctor gave me amitriptyline for sleep and that really threw me for a loop. I'm still trying to recover.  Good healing to you!

 

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It seems like going on and off or even taking Xanax once per day as opposed to many is problematic. Kindling related possibly. I noticed the interdose withdrawal issues many years ago and started breaking my daily dose in to 5-6 pieces to take every 4 hours. I knew nothing about withdrawal beyond how I felt. My issues with it were more psychological (it caused panic disorder and agoraphobia) than physical, although near the end I was getting tested for autoimmune disorders and even discussed M.S. with doctors on many occasions. It seems this is all too common.

 

I have considered flumazenil on several occasions. It sounds like it helped you.

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I never noticed any problems until the year 2019 late in the year when I was working through something from my past and I was using it every night at bedtime which I had never done before and I started feeling not as good but I didn't attributed to that neither did the doctor. At that time the doctor prescribed the .50 twice a day I would break it in small pieces and use it throughout the day it's when I did that for five weeks that I really started having severe panic attacks and that's when I thought it was the Xanax. I talked with the doctor and they said you can just stop taking it. So I did and had a terrible reaction after 2 weeks I thought I wanted to reinstate it but the doctor said no it can't be the Xanax. So I kept going for about 2 months or so and then I found out about flumazenil and gave that a try. Honestly within the week I started feeling better and I didn't realize anything about withdrawal that your sleep could be disrupted I was sleeping 5 to 7 hours a night then the doctor gave me the amitriptylin which I took for 12 days and it threw me right back into a very bad place. I think that's what did the most damage. Now I'm 22 and a half months out and still really suffering with barely any windows.
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I'm really sorry to hear you are still suffering after so long. I have read through all reports on flumazenil that I can find and it seems like in cases where there are only a few IV infusions, the results are generally short lasting. Reports for slow infusion with a pump over a few weeks seem more promising, but I can't find a ton of reports either way. One thing that has really helped me (and I say this with a big disclaimer that I am not a medical professional nor am I recommending this as treatment) is Bacopa (Synapsa). I saw significant and sustained progress after taking it for a few weeks. I have read one report where it was believed to have caused a long and severe wave, so I try to be careful and only take it short term. Who knows if the benefits will last long term, but even after stopping I was still in a window weeks later.
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I actually went to the Coleman Institute and had flumazenil the first time and felt better and then got aggravated by the amitriptyline. I went back for two more treatments of a week each and each time I felt a bit better. I was having window days one per week. That stopped about 9 months ago. I did have a very random window day that was really good last November. I'm hoping I'm one of those slow healers that's just going to turn a corner. My chiropractor had me on bacopa complex a while back. It seemed okay it didn't flare me up but I didn't notice any big changes with it. That's great it worked for you.
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Coleman is actually where I was considering. The trip isn't terrible from where I live, although long road trips for me still aren't a thing. I heard they offer slow infusions, but it requires going in every day for vitals, so I would have to stay local for a few weeks. I will say with Bacopa, I tried others and Synapsa worked significantly better for me. I am sure you will heal and maybe even very soon. I hear of quite a few that heal around 24 months and it's somewhat rare to go out 3-4 years it seems and beyond that does seem very rare.
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I would say if you decided to go to the Coleman Institute just make sure you do your research. They definitely prescribed meds one is Clonidine, olanzapine and Propranolol and possibly Lyrica or Gabapentin. I was terrified to take anything but I did take a olanzapine and clonidine . I hadn't slept in weeks when I got there so the olanzapine and clonidine help me get some sleep at first. I feel they're out for the money and should have educated me and should never have given me the amitriptyline. They are also very expensive. I've read other benzo buddies having problems with a similar type of drug after doing better in recovery. Yes I'm hoping for the 2-year mark to make a bigger difference for me. Thank you for saying that. It's really been discouraging.
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I have heard nothing great about Coleman, but they are the only place I know of that offers slow infusion flumazenil in NE US. Even that I haven't confirmed yet. It sounds like they had you CT and used the flumazenil to soften the blow? If that's the case, I don't know why any doctor that understands this would support CT, but in any case you will recover!
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The CT came before the Coleman Institute. I was starting to react to the Xanax and my doctor's felt I could just stop taking it so I did I didn't realize all the symptoms that it would cause until I started really suffering. Then I asked my doctor if I could have Valium to taper off and she said no it can't still be the Xanax. So I suffered intensely until I found the Coleman Institute and did the flumazenil. But I do know that they won't do the infusion unless you have stopped the drug first. Cold turkey or otherwise.
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