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Medication Induced Setback Support


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Cindys do you happen to have a link for this podcast? It would be so interesting to listen to and understand setbacks a little better. I'm still in one after 17 months and still can't figure out what  happened to me  ???
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Hi y'all,

 

Just wanted to pop by to say I decided to take the vaccine.  I delayed it for as long as I could but decided that I needed to bite the bullet as I will not be able to tolerate the meds given if I actually got Covid.

 

I got the first dose of Pfizer 5 weeks ago on 08/19.  Going into it, I was in a bad place with the latest of my many setbacks from a cold switch to another thyroid med. The recommended gap between doses is 3 weeks but I decided to hold off for 8 weeks instead, as per my research, that is the sweet spot for the Pfizer dosing gap. 

 

Actual side effect of that first dose was just mild arm pain for a few days.  Then, like many setbacks before, I got complete abatement of my symptoms for about 3 days. Then things started to go downhill.  At this time, I have additional symptoms that I did not have before.  Never-the-less, I've decided in three weeks I WILL take the second. Don't care what it does to me. 

 

I may not be left standing, but I'll be plugging along like I have been for the last 3.5 years that I have been in a setback situation. 

 

Hang in there, all.

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Athsey,

 

Congratulations on getting vaccinated! I got vaccinated several months ago and was fortunate enough to not have any major issues with it.

 

Good luck on your second dose :)

 

HM

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Trina,

I understand how you feel, but just to encourage you, please believe that this setback will not last long. My setback was just a few months, caused by an antibiotic, went back into Severe WD symptoms after being off for 7 years. you will be ok. DE Foster just completed a new podcast on setbacks. It may help you to listen to it.

 

Always, cindy

 

Thanks:)

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Kathy M,

Just google Benzo Free Podcasts. And you will click on the site. DE Foster is the founder and speaker on the site, very informative. The podcasts on setbacks was his most recent. He starts the topic of setbacks at  about 16 minutes if you want to jump right into the topic start there.

 

Always, Cindy

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Kathy M,

Just google Benzo Free Podcasts. And you will click on the site. DE Foster is the founder and speaker on the site, very informative. The podcasts on setbacks was his most recent. He starts the topic of setbacks at  about 16 minutes if you want to jump right into the topic start there.

 

Always, Cindy

awesome! Thank you Cindy)
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so did any of you find you have new symptoms in the setback? My waves used to have some predictable patterns but now I'm all over.

And now I have new food sensitivities. Like there were things I could eat the whole 18 months and now I can't.

 

there have been some improvements but I'm still super sensitive to the slightest things - fragile is the word.

and the head pressure!! holy moly.

i guess I'm just needing some validation.

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Athsey,

 

Congratulations on getting vaccinated! I got vaccinated several months ago and was fortunate enough to not have any major issues with it.

 

Good luck on your second dose :)

 

HM

 

Thanks @

HeartMost!

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so did any of you find you have new symptoms in the setback? My waves used to have some predictable patterns but now I'm all over.

And now I have new food sensitivities. Like there were things I could eat the whole 18 months and now I can't.

 

there have been some improvements but I'm still super sensitive to the slightest things - fragile is the word.

and the head pressure!! holy moly.

i guess I'm just needing some validation.

 

I have found that every setback has its own set of nastiness, although there are some commonalities.  For example, I have fatigue, body aches with every one, but this particular setback from the first vaccine dose brought toothache and sharp groin pain that I did not have with the other setbacks.  Can't imagine what the second dose will bring.  And I still have to do a colonoscopy as colon cancer runs in my family.  :(

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My hormones in this setback are so radically off the charts affecting my quality of life and causing acute waves. I am starting to consider trying a small amount of progesterone and wonder if anyone here has had issues with it?
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My hormones in this setback are so radically off the charts affecting my quality of life and causing acute waves. I am starting to consider trying a small amount of progesterone and wonder if anyone here has had issues with it?

 

I never used progesterone, but note that it is a steroid and you may have to taper it if you try to get off at some point.  How are you doing regarding the AB setback?  Hope feeling better.

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progesterone is something you would have to taper off of as well. the body actually stores it in fat tissues, especially if it is in the cream form.

 

I tired the bio identical version at one time and it made me feel like I was having a heart attack in the middle of my sleep! that was during my year of unknown tolerance to benzos though.

 

I'm def due for a colonoscopy, but I'm waiting it out for a long time. I mean at this point if I had cancer I could not withstand treatment. I told my husband if I got cancer I would just let it take me bc my poor body is to fragile for anything else. Sorry I know thats morbid but I'm super serious.

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I don't know if I qualify to join this group, but maybe.  I would like to because I really identify with what everyone is going through. 

 

In my first week of having Covid in late August, probably about 4 days in or so, I took some OTC cough medicine with an antihistamine in it.  Once the med wore off, I had my first mega panic attack in many years, ever since the beginning of my benzo taper in 2012.  A couple days later, I took my first dose of azythromycin thinking it would help me get better faster.  The panic attack that I had after that dose was the worst I have ever experienced.  I have not stopped feeling extreme anxiety/panic since that time.  I know most of this is due to the fact that Covid itself has attacked my nervous system.  But I think the meds played a roll in how severe it has been. 

 

It's 7 weeks later and I'm still so very sick.  Some weeks the anxiety feels worse than ever.  It's extremely demoralizing. 

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progesterone is something you would have to taper off of as well. the body actually stores it in fat tissues, especially if it is in the cream form.

 

I tired the bio identical version at one time and it made me feel like I was having a heart attack in the middle of my sleep! that was during my year of unknown tolerance to benzos though.

 

I'm def due for a colonoscopy, but I'm waiting it out for a long time. I mean at this point if I had cancer I could not withstand treatment. I told my husband if I got cancer I would just let it take me bc my poor body is to fragile for anything else. Sorry I know thats morbid but I'm super serious.

 

Omg, I am also due for a colonoscopy as I have a family history of it.  Last one done 8 years ago because I can't seem to become stable enough to go for it.  I feel the same way, how will I withstand cancer treatment if I did have it?  At any rate I have decided to have the colonoscopy without anesthesia when the time comes.  I am so sensitized that I am actually afraid of the prep :(

 

@sage hill sorry you have to join this club.  Don't know what to say except I guess we will all pull through with time eventually.

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Athsey1 how are you doing since vaccine? You mentioned getting setback from it again I think? Can you say more about that or was it just a worsening of symptoms aka a wave? I feel like I need to really consider the vaccine because clearly covid is everywhere and I am constantly dodging the bullet so to speak. I isolate and quarantine and get all groceries delivered but firstly, how long can I keep this up and second, is that just a false sense of protection? Don’t want to overthink it (too late, haha) but trying to do some light searching around to see if folks have truly had setbacks from vaccine and weigh that out vs having a setback from covid or the meds to treat it. Thanks everyone and sorry y’all are suffering it’s been really bad for me the last 6 weeks. Praying for windows!!
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Athsey1 how are you doing since vaccine? You mentioned getting setback from it again I think? Can you say more about that or was it just a worsening of symptoms aka a wave? I feel like I need to really consider the vaccine because clearly covid is everywhere and I am constantly dodging the bullet so to speak. I isolate and quarantine and get all groceries delivered but firstly, how long can I keep this up and second, is that just a false sense of protection? Don’t want to overthink it (too late, haha) but trying to do some light searching around to see if folks have truly had setbacks from vaccine and weigh that out vs having a setback from covid or the meds to treat it. Thanks everyone and sorry y’all are suffering it’s been really bad for me the last 6 weeks. Praying for windows!!

 

WW, I posted about my first dose earlier.  I did get a worsening of my symptoms from my first dose, but I was steadily getting better.; it was definitely a setback as I had new symptoms from it.  Yesterday I got my second dose (8 weeks from the 2nd) and so far I have only had mild arm pain and a mild headache.  I don't know what the next few weeks/months will bring, but I am prepared for the worst.  At some point (who knows when), I'll get better.  Going into the second dose, I felt I was in a better place than when I went into my first, so I am hopeful that within 2-3 months, it will become tolerable.  I was actually thinking of waiting 12 weeks between doses, but I was at the point of "getting it over with".

 

I hear you about dodging the bullet. I have a son in school and I am constantly afraid he'll bring Covid home. I couldn't live that way (unvaccinated) any more.  Hope this helps!

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Athsey1 You are so brave for going forward with this and thanks for posting your experience I am sorry you've had to endure so many setbacks and symptoms.  Did the vaccine throw you back into acute? I am learning towards getting it but still very wary and my son is away at college (he pops in on the weekends in a mask on the porch for 30 mns and we talk but that's it).  I work from home very part time online but have been in an epic bad wave and had to stop working for a bit.  Are you able to function while setback? Or bedbound? 

 

 

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WW, I was already in acute when I went into the first dose - I had to cold switch to a new thyroid med (ArmourThyroid, as the FDA pulled my old NatureThroid off the shelves for being sub potent).  At over three years into multiple setbacks, I was just getting tired of having these setbacks rule my life and figure that I need to get on with things as best I could.  I figure if I overdo it, I'll "just" keel over and be done with; not trying to be morbid.  I am not suicidal, but I do wake up occasionally thinking it wouldn't be so bad if I did not wake up in the morning.  Somehow, and I don't know how, I remain optimistic, sometimes even have a sense of humor about it!  I have accepted the way I am (the super sensitivity, that is) and that acceptance is key to my survival.

 

I do work, luckily it is from home.  It is technically part time but at times I work full time hours. It does require sharp cognitive skills and I find that as long as I don't have anxiety, I am able to perform well.  I needed to work because not doing so was leading to situational depression and it is a great distraction from the misery. One of my persistent physical symptoms is almost debilitating foot pain, kind of like plantar fasciitis and pain in the achilles tendon area. So for the longest while - years - I just hobbled about, used a cane, walker, whatever.  It was difficult because the effort would physically wipe me out, but I kept chugging along.  In the last few months, I have been finally been able go for short walks in the neighborhood!

 

With this second dose, I took a few weeks off work.  I don't know if this is enough as my symptoms tend to peak around weeks 3 or 4.  But I'll figure out how to cope somehow. 

 

It is late in evening for me and I could feel a mild fever and chills coming on. Bring it on vaccine!  I'll still be standing and then some, at the end of this  :laugh:

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Wonder... it threw me back into acute and for 6 months did not get the 2nd.  But the 2nd wasn't bad.

 

I know now you should really hydrate yourself before getting the vac.  I got mine and then walked a long ways thought I was absolutely fine.  NOT!

 

But you are right, it is either get the vac or get covid, I think.  From all that I know, the vac is better than that!  I do know people whose parents died from covid and a friend whose husband has been on a ventilator.

 

I've been a hermit, and continue to be, but think gives som epeace of mind to get the vac over with.

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I'm terrified to take the vaccine as well guys. My cns is so bloody terrible that I know it will mess me up. Each time I start thinking about maybe getting it I have to slap myself in the face and say no.
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I haven't been on here in awhile and thought I would come to post some positive news until now I am in another setback.

 

I started turning corners in August and September. I was even better in some ways than I was before the antibiotic. I was still having bad, bad days but they were getting better and my good days were really good. Not normal, not healed, but good.

 

Then all hell broke loose again this week. Thought I was in a really bad wave but I keep getting worse as the days go on. Feels like withdraw. Couldn't think of what I've eaten or done that would have me in this acute state. Then I remembered that I had been sipping on Powerade since July. I was so bad in July I went to the ER and my metabolites were off. I didn't let them give me any IV with magnesium in it but my naturopath suggested drinking a bit every day. I found Powerade that is sugar free and I began drinking it throughout the day slowly. It said it has only trace amounts of magnesium in it (less than 2%) and the other ingredients were just electolytes. I drink a LOT of water too because I have kidney stones and am prone to UTI's. I never drank it all at once and never in large doses.

 

Well I found out last week that it has Splenda in it and I thought that can't be good so I just stopped drinking it. I have been in acute hell again ever since. All the mental symptoms back. I won't even go into detail. I am praying it's just an awful wave but my waves aren't usually like that. I eat avocados and other things with magnesium in it without any type of reaction. It's hard to say if such a small amount would do this damage but I have been drinking it most days since July.

 

Devastating to think my progress wasn't really progress and no real healing had taken place. That it was just my gaba receptors getting a dose of something it was craving to function normally. I am so careful about what i eat and take, etc. I feel so stupid that I did this to myself.

 

I can't do this again. Things almost ended in July for me but I decided to press on.

 

I am 33 months of Xanax and 7 months post-setback. I just wanted to put this out there in case anyone tried something similar.

 

Wish you all continued healing and hope.

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Hey guys. I haven’t posted in awhile. Just wanted to say hi and that I just hit 3 years on September 4th since my catastrophic floxing reaction to amoxicillin. Athsey, we’ve been through it since the beginning at the other site, and I just want you to know you’re not  alone. I’m still very ill everyday too. I’ve actually been getting hit real hard since my 3 year anniversary.

 

I have lots of symptoms still but to name a few, akathisia, terrible agitated body-wide nerve pain, chemical anxiety, electrocution feelings, vertigo, memory problems, anxiety, depression, Anhedonia, etc. Very hopeless as it just seems never ending. Also my cns is still extremely sensitive so I still fear a big setback again. I also fear finally climbing out of this one day after almost a decade just for something tiny to send me right back in to start over from day one because apparently I’m the slowest healer out here.  I’m starting to think I won’t be able to have children as ill run out of time and cannot risk a setback into akathisia if I ever get out. I’ve become bitter after 5+ years of torture.

 

I think of you all often. Hope everyone is seeing progress and healing.

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Hey guys. I haven’t posted in awhile. Just wanted to say hi and that I just hit 3 years on September 4th since my catastrophic floxing reaction to amoxicillin. Athsey, we’ve been through it since the beginning at the other site, and I just want you to know you’re not  alone. I’m still very ill everyday too. I’ve actually been getting hit real hard since my 3 year anniversary.

 

I have lots of symptoms still but to name a few, akathisia, terrible agitated body-wide nerve pain, chemical anxiety, electrocution feelings, vertigo, memory problems, anxiety, depression, Anhedonia, etc. Very hopeless as it just seems never ending. Also my cns is still extremely sensitive so I still fear a big setback again. I also fear finally climbing out of this one day after almost a decade just for something tiny to send me right back in to start over from day one because apparently I’m the slowest healer out here.  I’m starting to think I won’t be able to have children as ill run out of time and cannot risk a setback into akathisia if I ever get out. I’ve become bitter after 5+ years of torture.

 

I think of you all often. Hope everyone is seeing progress and healing.

As I was reading your post, I was feeling everything you wrote. I have suffered the last 6 1/2 years. I have had months of healing in between my acute hellish mental and physical setbacks as if I was withdrawing all over again so the fear is so profound this time when I heal again fearing the next setback. I have had 5 setbacks so far and still in this current setback. I am entering into the 11th month. In fact, some aspects of my setbacks are even worse than withdrawal. I was only short term benzo prescribed for sleep (less than 6 months from start to totally end of taper). I'm 67 and feel like my life has been ripped away. Our ages are different but the hell is the same! When I heal this time, I have to be so extra cautious of anything I ingest or breath. I can only guess that this last setback was caused by a flouride treatment, Vitamin D with K and an internal antibiotic nose cream (all taken in the same week but me not even thinking about a setback just thinking it was COVID depression starting). Prior to this setback, I didn't fear. I always thought I was healed and I jumped right back into life. This time when I heal, I will be extra, extra cautious and constantly be aware. I wish with all my heart this evil hell will go away for all of us!!!

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@[Wa...]

 

"This time when I heal, I will be extra, extra cautious and constantly be aware." (can't figure out how to embed this quote :idiot:)

 

This is so true.  If I were more aware, or knowledgeable, that any small thing could cause me a setback, I would not be in such a terrible state today.  You live and learn  - the hard way.  I don't even think I needed the 2 courses of antibiotics I took earlier, but I took them since I tolerated them well before.

 

Covid vaccine 2 - actual side effects were minimal.  Pain at injection site, headache, fever and chills - all very mild and gone by day 4.  Again, I also got a complete abatement of setback symptoms for about 2 days.  Well, it's 12 days since the shot and things are, expectedly, not so good for me right now.  Any CNS healing I had seen prior to the shot has been erased and symptoms have ramped up. Don't want to jinx it, but fortunately so far I have had very little anxiety and for me that is a biggie, so I am hopeful that things may not get terrible.  I can tolerate anything else but anxiety is hard to swallow.  Body aches are through the roof.  What I have going for me is that I went into this prepared for the worst, so I am just going to have to tide it out.  Will report back in a month.

 

Best wishes to all.

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