Author Topic: Medication Induced Setback Support  (Read 17412 times)

[Buddie]

Medication Induced Setback Support
« on: December 20, 2018, 04:02:58 pm »
Hello.

I was 18 months off and doing fantastic. Considered myself 95% healed with just a couple lingering symptoms (fatigue and food sensitivity) that were more just an annoyance than anything.

I came down with a uti and took 7 doses of macrobid which threw me back into acute hell. And here I still am 21 days later.  :(

Occasionally I get brief breaks in my symptoms, but the mental stuff is raging pretty non stop for the most part.

My most concerning symptoms are

Dr/dp
Emotional numbness
Dark depression
Fear
Anxiety
Pins and needles
Temperature issues
Intrusive thoughts
Toxic mornings
Head pressure
Cog fog
Irritability
Sensory issues

These cycle daily, but typically settle down at bedtime.

I know there are some others here who are in the midst of a similar experience and thought maybe a support forum might be helpful.
« Last Edit: December 20, 2018, 04:20:42 pm by [Buddie] »
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Medication Induced Setback Support
« Reply #1 on: December 20, 2018, 11:29:52 pm »
Hi [...]
Sorry you're still suffering, i was at least a month in straight acute, horrendous, no breaks, after i stopped my AB, and the 6 weeks after that were very unpleasant, now i'm almost 3 months out from it and i'm noticing some small improvements in that i'm at least getting windows back, but waves are coming every 4-5 days and lasting 3 days, before the AB i was going about 2 weeks in a decent window with waves lasting only a day.

Main sxs now are irritability, muscle pain (takes me about 3 hours after i get up to walk ok), neuropathy in my feet and lower legs, fatigue, toxic wake ups and  hot sweats (although it's 40C where i am so i guess they're par for the course!). I was getting awful adrenaline surges 4-5 times a night (which had passed off before the AB) but they seem to have passed off for now - i always say "for now" as i am always waiting for sxs to pop up again.

However I've noticed my mental state is slightly [...] this week, although i am still getting depressive waves they're not so intense and mentally i'm coping with the sxs [...]. TBH though, i'm dreading Christmas etc feeling like this (although last xmas was a lot worse), have a 6 hour car trip to my son's future inlaws, we hardly know them so thank god i booked a separate place to stay for me and husband, i couldn't face the thought of being in a crap wave with nowhere to escape to. At least they live by the beach so it will be cooler (i did too until 4 months ago when we moved inland, [...] anticipating the hot sweats coming back).

BTW anybody got any ideas on how to avoid toxic holiday food without being rude? i've cut out all sugar and that seems to have helped the hot sweats somewhat but a few  days ago i was given a piece of xmas pudding which seemed to be 100% alcohol, literally burned my throat it was so strong, i didn't know how to refuse and be polite and i thought that the alcohol would have burned off in the cooking process, but i was very revved up for about 8 hours afterwards, thank god that passed off. It's as though we have to be constantly vigilant unlike "normals" that just do whatever they like, so draining.

Thanks for starting this thread [...], there are certainly a few of us lately with this issue.

Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Medication Induced Setback Support
« Reply #2 on: December 21, 2018, 03:56:21 am »
Iím here! Thanks for making this group. Iím in a terrible wave but wanted to check in. Will write more tomorrow.

Stupid antibiotics.. who wouldíve thought?!
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Medication Induced Setback Support
« Reply #3 on: December 21, 2018, 12:49:40 pm »
Hi [...]
Sorry you're still suffering, i was at least a month in straight acute, horrendous, no breaks, after i stopped my AB, and the 6 weeks after that were very unpleasant, now i'm almost 3 months out from it and i'm noticing some small improvements in that i'm at least getting windows back, but waves are coming every 4-5 days and lasting 3 days, before the AB i was going about 2 weeks in a decent window with waves lasting only a day.

Main sxs now are irritability, muscle pain (takes me about 3 hours after i get up to walk ok), neuropathy in my feet and lower legs, fatigue, toxic wake ups and  hot sweats (although it's 40C where i am so i guess they're par for the course!). I was getting awful adrenaline surges 4-5 times a night (which had passed off before the AB) but they seem to have passed off for now - i always say "for now" as i am always waiting for sxs to pop up again.

However I've noticed my mental state is slightly [...] this week, although i am still getting depressive waves they're not so intense and mentally i'm coping with the sxs [...]. TBH though, i'm dreading Christmas etc feeling like this (although last xmas was a lot worse), have a 6 hour car trip to my son's future inlaws, we hardly know them so thank god i booked a separate place to stay for me and husband, i couldn't face the thought of being in a crap wave with nowhere to escape to. At least they live by the beach so it will be cooler (i did too until 4 months ago when we moved inland, [...] anticipating the hot sweats coming back).

BTW anybody got any ideas on how to avoid toxic holiday food without being rude? i've cut out all sugar and that seems to have helped the hot sweats somewhat but a few  days ago i was given a piece of xmas pudding which seemed to be 100% alcohol, literally burned my throat it was so strong, i didn't know how to refuse and be polite and i thought that the alcohol would have burned off in the cooking process, but i was very revved up for about 8 hours afterwards, thank god that passed off. It's as though we have to be constantly vigilant unlike "normals" that just do whatever they like, so draining.

Thanks for starting this thread [...], there are certainly a few of us lately with this issue.

I am glad to hear that you're starting to get some windows again! I have been doing a little [...] the last 3 days. Still lots of symptoms, but more time where I feel a little [...].

Honestly my most concerning symptom right now is that my body temperature is all over the place. Which concerns me that there is still infection. I think I will test my urine again today. I've tested it four times and it's been clear every time. I am still paranoid tho. However I did have this issue in acute. I am still nervous about it. I have a doctors appointment with a new doctor on the 31st. I feel like I will be able to chill out a little more once I find out for sure that there is nothing physically wrong. The thought of possibly having to take another AB is stressing me a lot.

I cannot imagine trying to travel right now. I am dreading all the Christmas dinners we have coming up. There are few people in my life who understand what I've got going on. Which I'm sure you experience as well. I also wondered how I would handle not eating all the delicious crap food. I have completely changed my diet and am really revved up by junk. So I'm really excited to be questioned about not eating. Not! Lol.

I am glad your mental state is [...]. I have had a lot of that black hole depression crap since this happened. It has lifted a little. I really hope it stays away. My cog fog has seemed a little [...] too. Tasks haven't seemed as overwhelming and daunting. Hoping that's a good sign.

Iím here! Thanks for making this group. Iím in a terrible wave but wanted to check in. Will write more tomorrow.

Stupid antibiotics.. who wouldíve thought?!

So sorry to hear you are in another wave. What symptoms are troubling you?
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Medication Induced Setback Support
« Reply #4 on: December 21, 2018, 02:29:01 pm »
So I tested my urine again. Negative.
I even did a test for bv and yeast. Negative.

I guess the temperature issue is just my whacked out nervous system.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Medication Induced Setback Support
« Reply #5 on: December 21, 2018, 10:10:36 pm »
So sorry to hear you are in another wave. What symptoms are troubling you?
[/quote]

Iím at a little over 3.5 months since the setback & The mental stuff is still horrible. It seemed to peak about a month ago from 2-2.5 months (I was so scared and didnít understand why new things kept coming), eased a bit and now this last week has been horrible again. All this stuff was gone before the ab. I donít remember having such a scary depression like this before even in my first acute (I canít really remember though.) But all the same symptoms as you pretty much and each day a different one is at the forefront.


I had my reaction September 4th. Month 1 was horrible akathisia for a few days after the reaction then BAD flu like symptoms & muscle pain/twitching, Achillesí tendon pain, hypnic jerks, adrenaline rushes,  anxiety, panic attacks, health anxiety and insomnia with 20 min short waves of intrusive thoughts, depression, anxiety etc... but with clear and frequent windows of my previous baseline. What was interesting was when I would get hit with  the flu and body symptoms Iíd have a mental window, then when mental symptoms hit the body symptoms were gone.

Then month 2 (October) was awful chemical anxiety and panic, racing & intrusive thoughts, ocd, emense health anxiety, restlessness, constipation, metallic taste on tongue, burning skin and tongue, sweats/ chills/ pain and then depression hit hard out of nowhere at the end of the month, also some windows of previous baseline. Physical and mental combined.

Month 3 (November) everything went to shit. Completely non functional. Fear, anxiety, adrenaline rushes, horrible horrible (sorry but I hate this symptom!!!) intrusive thoughts, dpdr,  extreme ocd & looping thoughts, confusion, fear of being alone, doom & gloom, worse panic attacks, dread, dark depression. The agitation & akathisia peaked unbearably again for like 4 days (this freaked me out so bad!) zero positive emotions, crying spells & feeling disconnected. Hyperosmia, phantom smells, constipation & other physical symptoms. The day after thanksgiving the depression magically just went away... just like poof. Had like 2 short windows. This month has shaken me emotionally. Iím still scared itís going to come back.

Month 4 (December) I had some [...] days but the last 8 days or so (during my monthly cycle) have been really horrid again. So everything above again but even though itís been pretty bad itís not AS bad as last month.  Then of course ruminating, looping thoughts, canít relax. Fear of going crazy is back again (I did have that really bad in acute), no memory and cognitive issues.  Also painful nerve pain in various areas and body aches in legs along with other physical symptoms like throat issues, sweating, no appetite, twitching, sensitive to smells, lights and sounds etc. itís all so scary!  And the depression that was here from end of oct to end of nov was gone for a whole month!! But just came back  :tickedoff: The depression needs to GO! It gives me this awful heaviness feeling in the pit of my stomach that you just canít ignore and makes it feel hard to even breathe. Iíve only had couple  short window this month too, sometimes [...] at bedtime but last night that wasnít the case.

I just want to get out of acute! I can deal with having symptoms but I wish I could dial back the intensities because itís still so in my face and canít ignore it!

What I have been struggling with is hopelessness that I have to start all over from the beginning again. Iíve read so many setback stories of people getting back to baseline gradually after some weeks or months and I just donít know because these symptoms are so bad for me still & since I got some new symptoms I didnít have before.. Iíve been crying so much because I canít believe this happened to me again. I really thought Iíd [...] have to visit acute hell ever again.

BUT...I think this month itís finally not getting any worse, so hopefully this is the beginning of the  turn around and it clears up from here but Iím still really struggling and donít know what to think. I did just go grocery shopping alone for this first time since this setback so even though I canít feel it I must be making progress. My fiancť tells me the same thing but in the worst moments I donít believe it. Just dragging through the days waiting for improvements. Itís been horrendous. I have seen improvement in the insomnia though.

Do you guys think this is normal?
« Last Edit: December 21, 2018, 10:45:18 pm by [Buddie] »
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Medication Induced Setback Support
« Reply #6 on: December 21, 2018, 11:06:19 pm »

Geez. I am so sorry you are suffering so much.
It is beyond difficult to be thrown back into acute.
I genuinely thought, I'd [...] have to go through it again, so I completely empathize and understand your feelings of hopelessness. I have them as well. I don't know what is normal and what's not anymore. I can't even believe this is real life half the time.

I am glad you have seen some improvement this month, and I am certain your period has revved you up. I wish I had the answers for us. I truly do.

I have ran a low grade temp of 99.3ish almost all day today, and have had a migraine which seems to be getting worse. I have [...] had a migraine before.The entire left side of my head is in agony. Sounds and light hurt. My anxiety has been through the roof trying to figure out what mystery disease I'm dying from today. Lord.

Hoping this resolves for all of us soon.
 :smitten:
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Medication Induced Setback Support
« Reply #7 on: December 21, 2018, 11:32:44 pm »
I had a lot of migraines and headaches throughout my recovery.

Some non drug things that Iíve found helpful are:
A hot rice pack wrapped around my head or neck
Laying down as still as possible with low light and sound
Meditating through the pain
Pinching the nervy spot between your pointer finger and thumb
Drinking ginger in hot water can help with pain too. I did that a lot early on for period cramps.

Sometimes only waiting til nighttime to sleep it off would make it fully go. Iíd always wake up the next day with it gone. Iím sorry youíre dealing with that, they suck big time. I remember a few times sleeping over a bucket because Iíd get so gaggy and nauseas from them. Also, crying always makes it worse!

Iím glad your urine tests are all negative. That must be a relief.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Medication Induced Setback Support
« Reply #8 on: December 21, 2018, 11:35:20 pm »
Oh Waiting this is so horrible for you, i'm so sorry that you're having to go through all this again, you are about 2 weeks ahead of me i think with the setback, i had pretty much similar for the first 4-6 weeks but at least i am getting some windows albeit shortlived. My heart goes out to you. I've been thinking about these setbacks and I wonder because penicillins act on the same receptors as benzos and downregulate them, when the AB is stopped it results in the same sxs of acute as the recovering receptors have been re-injured and need to re-heal. I think that these sxs are unfortunately normal but it seems terrible that you should have to go through this so intensely after just one dose. I took 2 weeks of the stuff.

[...] i understand why you keep checking your urine, living with the fear of maybe another setback with another AB is very real, i wonder if we will ever be able to take "normal" stuff again without going back into acute, it's really quite terrifying. Glad it's clear so far - as i'm sure you are.

Well mental sxs seem to have returned for me, woke up today with pretty bad dp/dr and disconnection from everything, (plus some anxiety and roaring in my ears) i guess it's anhedonia again, just in time for xmas, I am seriously dreading xmas day. Waiting I can relate to the feeling of hopelessness, it's like it's groundhog day and i'm starting to think i'm [...] going to heal and just [...] get on with adapting my life to it. Sometimes  I wish i could just be vaporised in my sleep....

Do you guys have any family support? My hubby is not very supportive any more, ignores me most of the time so i spend most of my day in silence. I don't blame him, we bought this great big property and i can't do a thing to help in it, i was able to before this AB setback, and now the relationship has seriously deteriorated. He also has Aspergers (didn't know before i married him) so empathy is in short supply. Friends have dropped like flies as i have no energy to actually be a friend or make new ones
.
Waiting you are amazing to be able to do grocery shopping with these sxs, give yourself a big pat on the back, no way can i do that! We just have to keep on keeping on, this time last year i was sooo ill but i told myself by this time next year it will all be over, i don't feel i can tell myself that this year although there has been some improvement. Just such a long long slog.



Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Medication Induced Setback Support
« Reply #9 on: December 21, 2018, 11:38:02 pm »
Thanks for the advice.
I am supposed to go to a couple Christmas dinners this weekend and am truly considering just staying home. I dont feel like dealing with it.

I can't seem to convince myself that the infection is gone despite them being negative. I am so paranoid, and this on and off low grade fever has got me stressin. I see a new doctor on the 31st, so I'm just trying to get through until then.

What a way to spend the holidays.
You have any dinners or anything coming up?
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.