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Medication Induced Setback Support


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Hi all, 

 

Wanted to share my experience with doxycycline.  Two weeks ago I completed an 8-day course of doxy.  Things started to go bad at day 2.  I had to complete the course as I had bloody cough and nasal discharge from a severe case of sinusitis/URTI.  So here I am in agony from a acute symptoms again.

 

I was healing nicely from a massive setback from steroids (one shot, took me almost a year to get windows).  As soon as the first windows appeared, I had to take the doxy. And I am in hell again.  I have odd few hours where I feel OK, only to be slammed shortly after.

 

Like everyone else, this is taking everything I have, especially my sanity.

 

(Hi Waiting12, I am Survivor1 from that other place)

 

The sad thing is that I can't seem to get stable enough to ever taper the last drug I am on - Trazodone.

 

Aargh!

 

Hi friend! Oh no! I can’t believe this happened. I was just thinking about you the other day hoping you were out of the woods by now. I’m so sorry this happened to you :( sadly it is not uncommon as you know. Did your reaction worsen from day 2 on? What kind of symptoms did you get— any new or does it seemed like it flared up your previous ones?

 

I know what you mean by it taking everything you have. Just brutal. I’m still doing poorly myself from the one dose of antibiotic. How scary is this! Couldn’t even have a full course if I needed it.

 

I really wonder if these severe  sensitivities heal or if people like me who get akathisia over and over  are different and have to stay away from medicine forever.

 

Again, so sorry you’ve found yourself here. I hope it is very short lived for you!

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"What kind of symptoms did you get— any new or does it seemed like it flared up your previous ones?"

 

I mostly got a flareup of old ones, but there were two that were new: headache and nausea.  I had never had these two despite my multiple drug discontinuations, but here they are.  My worst symptoms now are severe fatigue and body aches, but there are so many others ...ugh.  New ones seem to pop up as time goes on too - I started having night sweats two nights ago.

 

By day 2 I was getting severe insomnia, then headache , then elevated blood pressure.  I stuck with it for 8 days, because I did not want to risk pneumonia.  On day 9 I had the worst case of alerting sensations ever.  I was like a jumping fish on deck everytime I drifted off to sleep, with heart racing each time.  Thankfully the intensity of this particular symptom has dialed down.  I am exactly two weeks out today.

 

I read somewhere that doxy affects GABA too, who knew!

 

So sorry you are going through this never-ending agony.  What can we do but wait.

 

Hang in there, as will I.

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  • 4 weeks later...
So l got setback due to been given a steroid and AB for chest infection, having had no windows at all up until Sunday then the most amazing window l felt totally healed, sadly it only lasted 1day but it’s a start....hope everyonee is doing ok
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Katrina, I am so glad for you!  the only thing we can do is wait.  You WILL get better.

 

I am hanging in there.  This doxy has given me massive rebound inflammatory issues, just as the steroid did. (I was being treated for a severe inflammatory condition, that is why I was given the steroid.). I have gum bleeding, a productive cough, severe skin issues, all of which had improved before the doxy. Now it seems any progress I had made has been erased.    Not to mention the anxiety, body aches, etc.  Can't seem to catch a break!

 

I hope everyone else is seeming some improvement.  Muddlefoot, thanks for starting this thread.  How are you doing these days?

 

Take care all

 

 

 

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Hi Athsey, l am so sorry to hear you are having a bad time of it but you come across so brave and strong l am sure that will see you through this nightmare. On Saturday l got up and my symptoms were up and down then the afternoon and evening l felt normal and the same thing happened on Sunday but sadly today ( Monday) right back in a wave again. Athsey please keep me posted on how you are doing.Love Katxxx
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  • 3 weeks later...
[ef...]
Omg I'm in another setback, this time due to aspirin which I've taken for 5 weeks. I've felt worse sxs for weeks now so i researched it and it is a gaba receptor inhibitor. I feel totally back to square one acute, had a severe adrenaline surge at 4am this morning with my bp sky high and heart rate of 160. I can't go on like this anymore, everything seems to have an adverse effect on gaba receptors. I thought aspirin would be ok, should've researched it before taking it but i was seriously unwell in hospital with a 2nd stroke (due to bwd). I swear to god I'm never taking another pill again. I'm just devastated.
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Omg I'm in another setback, this time due to aspirin which I've taken for 5 weeks. I've felt worse sxs for weeks now so i researched it and it is a gaba receptor inhibitor. I feel totally back to square one acute, had a severe adrenaline surge at 4am this morning with my bp sky high and heart rate of 160. I can't go on like this anymore, everything seems to have an adverse effect on gaba receptors. I thought aspirin would be ok, should've researched it before taking it but i was seriously unwell in hospital with a 2nd stroke (due to bwd). I swear to god I'm never taking another pill again. I'm just devastated.

 

SS you had another stroke?! What happened? Are you ok? I don’t doubt the aspirin for a second. I took a baby aspirin (I think 81 mg) at about a year and a half into my recovery and it made me sleepy like a sleeping pill then I woke up the next day feeling so bad and just pure crazy brain. It was awful. It wore off thank goodness after about 12 hours total. I sincerely hope it wears off for you quick like too. I’ve read around here all sorts of things that one wouldn’t think would do anything have made others feel worse (like aspirin, Advil, Motrin, Tylenol etc) I used to pop ibuprofen like candy before this. I don’t dare touch anything now. I hope you’re feeling better this evening.

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Thought l was getting through this when windows started up but been thrown into it again intense anxiety and head pressure some windows but few and far between
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[ef...]
Hi Waiting, and Yeah i had another stroke 6 weeks ago, again due to bwd , I've  lost 80% of my vision, Dr's are saying that the relentless adrenaline surges have damaged the lining of the blood vessels inside my heart and it's misfiring and putting me into atrial fibrillation which can cause a clot to form resulting in a stroke. That's why they put me on the aspirin. I was lucky in that i had a very benzo wise medical team, I'm taking propranolol to try and help with the surges because I'm still getting them through the night with horrible toxic wake ups.  I've been on the aspirin for 5 weeks so i don't think the sxs will subside anytime soon, I've got horrendous dp/dr and severe stomach pain and I'm terrified of it all, crazy brain describes it very well. Normally i research everything but this time i was too unwell and i just thought because I'd taken aspirin pre benzo it'd be ok, i think for some people the cns never fully recovers in that it stays highly sensitive, omg i can't believe how these evil drugs have affected us. Kat I'm sorry you're not doing too well, it's criminal how our lives have been taken from us.
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Waitingstar:  I am so sorry you are going through this terrible period.  I want to give you and friends on this thread some positive feedback. 

 

I  had a NSTEMI (non segmented myocardial infarction that caused afib and pericarditis.  I was tapering on my own before

I knew anything much about benzos and took an antibiotic, amoxicillin, and drank one glass of wine at the same time. So

unfortunate but I did not understand the potential effects of this combination.  I had also been on 2 mg of clonazepam for years so was already in tolerance withdrawal.

 

The good news is, I rejected all medications that the doctors wanted to prescribe, even aspirin with positive results.  I found BB's when I was half off my 2 mg and started a slow taper, well moderately slow.  I wore all the monitors to tell me when the afib was happening but by then I knew it was a symptom of withdrawal or at least highly suspected.  I would never suggest a heart patient

not take aspirin if a doctor advised that but I felt I had a good reason to not take it.  I knew I could take it as a rescue medicine.

 

I am 4 months off and stay clear of any modulators of the gaba system, both negative and positiive and am at a point

where I have had no afib for a couple of months.  If my head didn't feel like a pressurized cabin, I swear I'd be 100% myself.

 

Today I was hammering in sheet rock and, granted, I am pushing myself but  I'm doing pretty dog gone good :thumbsup:

 

I wish you the very best, all of you following this thread.

 

Klonkar

 

 

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[ef...]
Thank you Klonkar for this uplifting post, all my heart issues and strokes are from bwd, i was completely fit and healthy prior to this benzo mess, I've always been sensitive to meds and up till now I've never taken any, always used food as a medicine. So good to read of your recovery.
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Wow, Southern Star, so sorry to hear of the stroke.  This must be terrifying for you.  I truly hope you recover from this.

 

Like most of you I have had a terrible time with my blood pressure too.  In fact I am so consumed by it that two nights ago I dreamt that my blood pressure was so high that I was bleeding from all my orifices, and I was looking down at my toes seeing the nails turn purple from the blood. I was startled from the dream and woke up in a panic...I did have many nosebleeds from the bp issues during the wd from steroid.  I think the only reason I have not had a stroke is that I am on trazodone and one of its side effects is lowered blood pressure, phew!

 

Early in my withdrawal from the steroid shot, I was diagnosed with pulmonary venous hypertension from the blood pressure being too high, so I hope there are no lasting heart issues.  I have not had it checked lately, because I do not want any meds for it.  My bp is now elevated again because of the doxy reaction. so who knows what's going on inside me.

 

SS, I am glad you posted about aspirin and GABA, I did not realize this.

 

Overall, I am not doing well with this past week being one of the worst.  Today was a better day, but I know that it won't last.

 

Klonkar, thanks for the update.  Your story shows that stability is possible.

 

I hope the rest of you are hanging in there.  Katrina, Waiting, I know it is so hard, but wait we must.  Thinking of all of you (us) ...

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[ef...]

Athsey I'm sorry you're having a rough time atm, same here, in a non stop wave of serious dark mental sxs, practically bedridden, I'm putting them down to the aspirin, i was on it for 5 weeks so i imagine it's done a pretty good job of reinjuring the receptors. We have to be sooo careful in bwd, not to mention the look from the doc when you mention it. I've started to say i have a lawsuit in progress, it soon stops their eye rolling although recently I've had very benzo wise docs on the whole.

 

I think you're wise not to go to a doc, i recovered very quickly after my 1st stroke and vowed I'd never go near another again, but this stroke is different and my prognosis is poor unless the problem caused by bwd is fixed, so an endless round of tests etc. My bp had settled until this aspirin setback, this awful wave has caused it to go up and of course it's always high at the doc. I take propranolol for the spikes and it works but the doc always wants to try and push pills. No way will i take anything unless i have researched it fully. This is a hard enough journey without adding setbacks to it.

 

Sending a healing hug to everyone x

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  • 4 months later...

Hi all,

 

I wanted to keep this thread alive so I'm updating my situation.

 

6 months since the doxy and am still buried under.  The fatigue/body ache is insane.  BP still high.  I do have days where things are tolerable, but never had a day of no symptoms yet. Yesterday started a massive wave of the WD flu.  Severe sinusitis, fatigue.  When will this end!!!!

 

I hope others are doing better...

 

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Athsey1:  thanks for keep this thread going.  I'm so sorry you are still suffering from the dog gone AB use. 

 

I'm 8 months off and often wonder how much better I would be if I hadn't taken two AB's several years apart while still taking my C.  I have some good news

to report though.  Symptoms are still with me everyday but last weekend I hiked over 8,000 steps up a pretty steep canyon behind my house and enjoyed the view of my little

city.  I jumped eight months ago and never expected to be able to hike so soon.  So many symptoms are gone and I expect full recovery.

 

I am struggling more now because I am trying to taper off Progesterone, another GABA modulator.  HRT probably really benefited me while I was tapering but I

want to get to a point where I can see what my brain will do without any help.  Make sense?/

 

Hang in there and enjoy those windows and if you all are anything like me, there will be bigger, brighter and  longer windows in the days to come.

 

Wishing you all the best

 

Klonkar

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Klonkar,

 

Thanks for giving some hope.  Deep down I know things will get better, but geez, I've been at withdrawal for more than 4 years with many other drugs...I can't wait for things to end.  I still have another drug to taper.  Yikes!

 

I am very glad you are doing so well.  Keep us posted ...Take care.

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Hey everybody, I have a relevant experience that I went through 12 years ago and I thought it might give you some hope.

 

Long before I was aware of what benzo withdrawal was, I had taken Clonazepam for a period of time as a teenager and when I came off I suddenly developed a "chronic illness." I now know this to have been withdrawal. A few years after that, I was starting to feel better, until I took the antibiotic clarithromycin, brand name biaxin. My entire world fell apart. I suddenly heard music in my head, I had extreme obsessive thoughts, dp/dr, insomnia, and just all those horrific withdrawal symptoms. I had mentioned I had no idea what benzo withdrawal was at this time so I thought I had very suddenly lost my mind. Doctors were at a loss, they always are, but diagnosed me with OCD, etc. The first months were horrendous, I was in survival mode. I had extremely horrifying thoughts about the people I loved and it scared me to my core.

 

As the months went on, an interesting thing happened. I started to shed my "mental illness" along with all my other symptoms. It took about 2 years in total to get to where I could say I was feeling better from what I now know was a setback.

 

Wish I would have known what was going on back then, it would have saved me from kindling myself horribly and going through it all over again these last couple years.

 

Hang in there friends, your brain wants to heal, and it will.

 

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Hello Fighting Fox,

 

Thanks for sharing your experience.  I'm glad you were able to recover, but I can't imagine having to wait a few years for total healing.  Just wondering, have you been able to take an antibiotic since that experience, or are still sensitive to ABs?

 

Best wishes for continued healing.

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  • 2 weeks later...

Hey everybody, I have a relevant experience that I went through 12 years ago and I thought it might give you some hope.

 

Long before I was aware of what benzo withdrawal was, I had taken Clonazepam for a period of time as a teenager and when I came off I suddenly developed a "chronic illness." I now know this to have been withdrawal. A few years after that, I was starting to feel better, until I took the antibiotic clarithromycin, brand name biaxin. My entire world fell apart. I suddenly heard music in my head, I had extreme obsessive thoughts, dp/dr, insomnia, and just all those horrific withdrawal symptoms. I had mentioned I had no idea what benzo withdrawal was at this time so I thought I had very suddenly lost my mind. Doctors were at a loss, they always are, but diagnosed me with OCD, etc. The first months were horrendous, I was in survival mode. I had extremely horrifying thoughts about the people I loved and it scared me to my core.

 

As the months went on, an interesting thing happened. I started to shed my "mental illness" along with all my other symptoms. It took about 2 years in total to get to where I could say I was feeling better from what I now know was a setback.

 

Wish I would have known what was going on back then, it would have saved me from kindling myself horribly and going through it all over again these last couple years.

 

Hang in there friends, your brain wants to heal, and it will.

 

Thank you so so much for sharing. It really means a lot. An antibiotic rocked my world as well about 17 months or so ago. I do very much fear this happening again in the future due to needing a pharmaceutical or something. I was already years into battling this thing when the antibiotic started me over. I’m so sorry for what you went through and what you’re now going through.

 

I’d also like to second the question above with, do these darn sensitivities to medicines (and everything else) go away or do we have to stay away from western medicine forever now?

 

Thanks again. And you’re so brave to have gone through that without knowing what was happening or without support. Just wow.

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I think that those of us that have excessive long term issues have to look at wholistic health avenues in detail to get things back in ballance sooner rather than later..

Fwiw, im concentrating on my GI first, but it took a long time just to get my diet to a point where it was worth starting on the finer details of biome, immune responses, etc..

-a super big topic and pretty individual it seems...

 

One hell of a ride for sure...

 

 

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  • 2 weeks later...

So y'all,

 

Am in a setback.  When I last posted, I had just developed WD flu-like symptoms including a 102F fever.  Took 2 Tylenol, and felt pretty decent after that.  It acted like a reinstatement of whatever drug started my downward spiral (steroids), and felt almost symptom free for about a week.  I thought I was on the home stretch.  Then I was hit.  WD began as if I was at square 1 again.  Now my BP is sky high again, among the usual suspects of anxiety, fatigue, etc.  I can't seem to catch a break! I am getting these ridiculous cortisol surges in the mornings, jolting awake with sweating and tachycardia.  Mornings are horrible.  Damn!

 

Seems like "little things" like aspirin, Tylenol can set one back if sensitized.  And now I am scared with the Covid thing - told my husband if I get it I am resolved to die.  I cannot go thru any antibiotics, fever reducer, or anything else.  Sorry I do not have better news, but I feel like I am at a breaking point. 

 

But onward I go, because there is no other way.

 

Hello @southern star, how are you doing these days.  I hope you are getting some relief from your aspirin setback.  Let us know how things are with you.

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  • 2 weeks later...

So y'all,

 

Am in a setback.  When I last posted, I had just developed WD flu-like symptoms including a 102F fever.  Took 2 Tylenol, and felt pretty decent after that.  It acted like a reinstatement of whatever drug started my downward spiral (steroids), and felt almost symptom free for about a week.  I thought I was on the home stretch.  Then I was hit.  WD began as if I was at square 1 again.  Now my BP is sky high again, among the usual suspects of anxiety, fatigue, etc.  I can't seem to catch a break! I am getting these ridiculous cortisol surges in the mornings, jolting awake with sweating and tachycardia.  Mornings are horrible.  Damn!

 

Seems like "little things" like aspirin, Tylenol can set one back if sensitized.  And now I am scared with the Covid thing - told my husband if I get it I am resolved to die.  I cannot go thru any antibiotics, fever reducer, or anything else.  Sorry I do not have better news, but I feel like I am at a breaking point. 

 

But onward I go, because there is no other way.

 

Hello @southern star, how are you doing these days.  I hope you are getting some relief from your aspirin setback.  Let us know how things are with you.

 

Oh my gosh! I am so sorry to hear this. So you took two Tylenol and didn’t feel anything immediate but a delayed reaction? How long have you been in this setback? I too cannot take or tolerate any medicine at all. God help us. This is truly terrifying. I know you’ve been through hell with the steroids. I hope this is very short lived for you. How were you doing before the Tylenol? I’ve said the same about Covid too. I won’t be able to participate in antivirals or vaccines.

 

Yes, you are right. Onward we go.

 

 

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Hi Waiting12,

 

It seems like my poor body is latching on to any med as a"reinstatement". After my steroid reaction, I had a similar reaction to anesthesia, doxycycline and now the steroid - each time I felt I felt ok for a while.  Then I deteriorate after some time back to square 1. In fact, it seems that each reaction is worse than the last.  I am so hopelessly kindled that I wouldn't be surprised if simply breathing air is causing me problems  :'(

 

Right now I am cycling through extremes.  I had horrible anxiety for about 2 hours, but it just broke, whew! and the body aches/fatigue are INSANE!

 

Prior to the Tylenol, I was not well, so it doesn't surprise me I am feeling lousy now, but the intensity is off the charts.  There seems to be a few people on SA who also had reactions to Tylenol.  BTW, I found out Tylenol affects serotonin and epinephrine, so no wonder...

 

Grrr...

 

How are you doing. Hang in there.  I tell myself "it has to get better" because it just has to.

 

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  • 3 weeks later...

I’m so sorry to hear that, Athsey! I have read lots of people having issues with things like Tylenol, Advil and such. Our CNS’s are just so out of sorts while recovering. How long has it been and have you started evening out at all?

 

If it makes you feel any better that is exactly how my body is now too.  I’m also so hopelessly kindled I can’t touch any pharma at all and many other things or risk square one or worse. It’s awful. I’m like a year and a half or more from the floxing and still having many problems. 2 weeks out of the month are very bad, two weeks better which coincides with hormones.

 

I did want to ask... is anyone freaked out by the talk of mandated vaccines coming up for the coronavirus? My body wouldn’t be able to handle that. What to do here? I’d rather risk getting the virus than getting akathisia from square one for another 4 years, that’s for sure. But there is talk of possible mandates and needing to show immunizations when renewing/applying for a US driver’s license.

 

I already can’t get back into college until I prove that I have I have had my tdap booster vaccination, which I can’t get. So what do us neurologically injured by pharma do in situations like this? I had to leave college because of withdrawal and adverse reactions. I want to go back and finish when I’m feeling better, but cannot risk a third setback! Any thoughts? Do I need to move to canada? Lol!

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  • 2 months later...

I received an email from benzo buddies just a minute ago and it made me think of you guys. I wanted to drop by and tell you all that I am better. It took the better part of a year and a half for me to really get back on my feet, but I am back to working as a stylist, raising my girls, and enjoying my life. I was going through an immense amount of stress when I had my setback and I truly believe that contributed to the length of time it took me to really start healing again. Stress is so detrimental to our already sensitive nervous system.

 

I still have symptoms, but they are tolerable, and can typically be curtailed with a nap. Lol. I hope you all are doing well. Hang in there, regardless and run towards any glimpse of freedom from this you my find.  <3

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