Jump to content

Medication Induced Setback Support


[Mu...]

Recommended Posts

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.

Link to comment
Share on other sites

[ca...]

Hi MF

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 better this week, although i am still getting depressive waves they're not so intense and mentally i'm coping with the sxs better. 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, never 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 MF, there are certainly a few of us lately with this issue.

 

 

Link to comment
Share on other sites

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

 

Stupid antibiotics.. who would’ve thought?!

Link to comment
Share on other sites

Hi MF

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 better this week, although i am still getting depressive waves they're not so intense and mentally i'm coping with the sxs better. 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, never 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 MF, 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 better the last 3 days. Still lots of symptoms, but more time where I feel a little better.

 

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 better. 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 better too. Tasks haven't seemed as overwhelming and daunting. Hoping that's a good sign.

 

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

 

Stupid antibiotics.. who would’ve thought?!

 

So sorry to hear you are in another wave. What symptoms are troubling you?

Link to comment
Share on other sites

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.

Link to comment
Share on other sites

So sorry to hear you are in another wave. What symptoms are troubling you?

 

I’m 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 didn’t 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 don’t remember having such a scary depression like this before even in my first acute (I can’t 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, Achilles’ 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 I’d 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. I’m still scared it’s going to come back.

 

Month 4 (December) I had some better days but the last 8 days or so (during my monthly cycle) have been really horrid again. So everything above again but even though it’s been pretty bad it’s not AS bad as last month.  Then of course ruminating, looping thoughts, can’t 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. it’s 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 can’t ignore and makes it feel hard to even breathe. I’ve only had couple  short window this month too, sometimes better at bedtime but last night that wasn’t 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 it’s still so in my face and can’t ignore it!

 

What I have been struggling with is hopelessness that I have to start all over from the beginning again. I’ve read so many setback stories of people getting back to baseline gradually after some weeks or months and I just don’t know because these symptoms are so bad for me still & since I got some new symptoms I didn’t have before.. I’ve been crying so much because I can’t believe this happened to me again. I really thought I’d never have to visit acute hell ever again.

 

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

 

Do you guys think this is normal?

Link to comment
Share on other sites

 

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 never 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 never 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:

Link to comment
Share on other sites

I had a lot of migraines and headaches throughout my recovery.

 

Some non drug things that I’ve 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. I’d always wake up the next day with it gone. I’m sorry you’re dealing with that, they suck big time. I remember a few times sleeping over a bucket because I’d get so gaggy and nauseas from them. Also, crying always makes it worse!

 

I’m glad your urine tests are all negative. That must be a relief.

Link to comment
Share on other sites

[ca...]

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.

 

MF 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 never going to heal and just better 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.

 

 

 

 

Link to comment
Share on other sites

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?

Link to comment
Share on other sites

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.

 

MF 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 never going to heal and just better 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.

 

Hate to hear the mental.stuff has returned. I know it's just awful.

I have my husband, and he does the best he can, but struggles with depression himself so me being sick again haa really taken a toll on him. We have two small children and well... it is hard. I love and miss feeling connected to them so much. My parents and grandparents are as supportive as they can be. My mom actually took the time to educate herself a little so she could understand a little better. She has been coming to help me with the girls while my husband works, but she lives an hour away so it is not idea that this be a long term thing. I really need some improvement in the next week or so before my husbands Christmas break is over.

Link to comment
Share on other sites

[ca...]

I have my mum but she is in the uk (I emigrated to Oz 37 years ago when i married my first husband), she is 89 and had a stroke in June but thankfully retained her thinking and speakiing powers, but i can't tell her too much as she gets upset, she is seriously sensitive to all meds (as i am) so she does understand. god knows when i'll ever be well enough to visit her again. It must be really hard with young children, i take my hat off to you big time, my children are adults, daughter emigrated to US (NYC) and just had a first baby in June, god knows when i'll get there, son is 6.5 hrs drive away, about to get engaged at xmas, hence having to spend xmas wth hid future in laws, i don't tell them much and try and "fake it" with them, no point  telling them, they can't help and they have their own lives.

 

As for holiday parties etc, only have one to go to tonight, (apart from xmas day stuff) it's local but we don't know anybody as we're new to the area, but i feel i have to go, dreading it as hubby terrible with new people and i'm in no state to help him out, have set a time limt for myself of 3 hours max and strict enforcement of foods i can eat, no alcohol seems to raise people's eyebrows but i tell them i'm on medication and i can't drink, i often feel like saying to people "What, you drink alcohol?" in the same tone they use with me for not drinking it.

 

I think my hubby has switched off more than usual as he can't cope with it anymore, burnt out with it, compassion fatigue i guess, and he had a mini stroke the week before we moved (fully recovered), me being so disconnected doesn't help either, this journey really does affect us on so many different levels, god knows what i'll be like next xmas, daren't even think that far.

Link to comment
Share on other sites

Thanks guys. I don’t get it either, but 20 mins after taking that 1 dose I knew it was bad & my mental state got weird and scary... but it felt like it wore off about 4 hours later & I was so thankful... then I woke up the next day with the worst akathisia ever. & I thought it would be a tough week or so... Then slowly all this creepy mental feelings came. Im like you MF.. I can’t even believe this is my life! I also had a wisdom tooth extracted September 24th with carbocaine... but I was already cycling through so much crap before that anyways. I do know that the sweating hands and feet came back after the carbocaine, but that’s all I noticed that was immediate.

 

I will say my first acute phase unfolded exactly like this. It peaked at about 60 days then better from there about 5% each month with massive backslides of like -25%  every month due to hormones. Do you guys get this too? I swear if I was a man going through this I’d be so much better off.  However these symptoms feel a lot scarier than my first acute phase, but my memory was so impaired then that I honestly don’t remember much of it. But maybe that’s the difference between gaba and serotonin since most of my recovery is from ssris. I think you are right on about that SS.

 

 

Christmas.. oh my. I’m supposed to go to church and 3 family gatherings. I stayed home on thanksgiving... I haven’t decided what I’m going to do for Christmas. I’ll forsure go to my immediate families gathering but I don’t know if I can handle the extended family stuff this year (we have a huge family). I’m 50/50 about church even but I know my mom will be upset if I don’t go.

Link to comment
Share on other sites

[ca...]

omg Waiting, i'm so amazed that you went and had a wisdom tooth out in wd!!!!! You are one very tough lady! I have an impacted wisdom tooth that seems to be starting to cause problems atm but no way would i be able to go near the dentist, i am keeping my fingers crossed it settles down. Interesting about the Carbocaine, i had that in injected in my toe when i had to see the foot guy after the AB didn't work on the infection (i'm so mad that i took 2 lots of the darn stuff and it didn't even work) and it caused me to have really bad sweating in my feet and hands for about 12 hours.

 

We will get through xmas!! i'm thinking being detached and disconnected might work in my favour LOL! my game plan is to not get involved in revvy up stuff, exit with the excuse of a headache if necessary, i've really got to watch the sugar as the last 2 times i ate sugary cake i had a horrible weird episode where i just couldn't put a proper sentence together, couldn't think of the words and felt completely dissociated with the strangest word patterns and thoughts coming into my head, only lasted about half an hour but it was enough to really terrify me.

 

How are you guys getting through the days? I'm trying to find a different thing to do every hour, nothing big, maybe read for an hour (near impossible), watch tv an hour (also very hard), a bit of sewing (somewhat easier), make some small food item, i feel so unmotivated and lethargic i find it difficult to even get in the shower and procrastinate terribly, yesterday just lay on the couch all day. All this is a  million light years from my previous self and very depressing.

 

I've got horrible hyperacusis back this morning and the man on the next block has brought out a horrible loud motor powered grass cutter thing, i feel like shouting out Shut the F..k Up!!!

 

Just keeping on keeping on

 

 

 

Link to comment
Share on other sites

Aww thank you! That’s what the AB was for. I had a wisdom tooth that was slowly coming in that I put off for years waiting til I felt better. But then this summer at month 19/20 I got some  gi issues & a new weird metallic/bitter taste on the sides of my tongue and really thought It absolutely had to be from the tooth. The metallic taste came back off and on for months even after the tooth was pulled so it wasn’t. But I stressed huge over it.

 

That IS really interesting about the carbocaine. My hands and feet are ‘still’ sweating 3 months later. It’s not constant anymore but often. That’s what I don’t get. Why do I get hit so hard for so long? I feel like I’m one of the worst of the worst and it scares me so badly. Or does everyone feel this way?

 

My days have been very routine and in survival mode. I too can’t watch tv again.  I play a lot of games on my phone, read hopeful recoveries, take my dog for a walk, eat every 4 hours even when I’m not hungry, house work, phone calls etc... nothing really, most days I’m just on the couch.

 

Link to comment
Share on other sites

Hi Guys... :)

 

Its been a while since I Have read a collection of posts that I relate so well to.. Not just the symptom aspects etc, But the whole life effect as well...

 

For those that dont know me, I was very messed up by intense medication well before benzos, and have been playing the WD game for nearly 8yrs one way or the other... Am kinda over it, but here we are...

 

I just wanted to offer validation to the sensitivity and experiences here, But more to voice that it does get better, and it is worth it... Just as when things go bad, as we get better, things also compound towards rebuilding our lives.. Those little choices where we can say yes to life and its activities start to add up, and one thing leads to another...

Its very hard to see at times, but our bodys are extremely good at untangling and healing us from these medicine messes, though as I found, it can take some time and acceptance...

 

Keep up the good work, have faith in yourselves when others doubt you, and above all, remember its the meds, -not the true or normal you...

Life will be full of colour as we paint our new futures...

 

Anyways, Thank you all, Its always good to read from others who "get it"..

 

A merry Christmas to you, But a super, extra awesome, fantastic NEXT Christmas, -A healed one..!!

(Maybe even for me too by then..!! :) )

 

:)

 

Link to comment
Share on other sites

omg Waiting, i'm so amazed that you went and had a wisdom tooth out in wd!!!!! You are one very tough lady! I have an impacted wisdom tooth that seems to be starting to cause problems atm but no way would i be able to go near the dentist, i am keeping my fingers crossed it settles down. Interesting about the Carbocaine, i had that in injected in my toe when i had to see the foot guy after the AB didn't work on the infection (i'm so mad that i took 2 lots of the darn stuff and it didn't even work) and it caused me to have really bad sweating in my feet and hands for about 12 hours.

 

We will get through xmas!! i'm thinking being detached and disconnected might work in my favour LOL! my game plan is to not get involved in revvy up stuff, exit with the excuse of a headache if necessary, i've really got to watch the sugar as the last 2 times i ate sugary cake i had a horrible weird episode where i just couldn't put a proper sentence together, couldn't think of the words and felt completely dissociated with the strangest word patterns and thoughts coming into my head, only lasted about half an hour but it was enough to really terrify me.

 

How are you guys getting through the days? I'm trying to find a different thing to do every hour, nothing big, maybe read for an hour (near impossible), watch tv an hour (also very hard), a bit of sewing (somewhat easier), make some small food item, i feel so unmotivated and lethargic i find it difficult to even get in the shower and procrastinate terribly, yesterday just lay on the couch all day. All this is a  million light years from my previous self and very depressing.

 

I've got horrible hyperacusis back this morning and the man on the next block has brought out a horrible loud motor powered grass cutter thing, i feel like shouting out Shut the F..k Up!!!

 

Just keeping on keeping on

 

I do the same kind of stuff. Small chores. Watch tv when I can tolerate. Read. Shower and brush my teeth. Feel like I'm just in auto pilot. I am reqlly sensitive to food too, so I am eating as clean as I can, avoiding all crap. Today I have decided to stay home from the first of our holiday dinners. My husband and kids will be going to his parents in a little while and coming back tomorrow afternoon. I just don't have it in me. And I don't feel like being harassed about why I'm not eating or asked about how my life is going. Having to pretend I'm not dead inside, is more than I have in me right now. It sucks. I had got my life back for the most part. I was teaching wine and canvas classes. Loving my kids and husband. Running 5ks. Makes me so sad to come so far to lose it all again. Anyways worry to be a downer this morning. Ugh. Just mad/sad/blah. Lol.

 

Aww thank you! That’s what the AB was for. I had a wisdom tooth that was slowly coming in that I put off for years waiting til I felt better. But then this summer at month 19/20 I got some  gi issues & a new weird metallic/bitter taste on the sides of my tongue and really thought It absolutely had to be from the tooth. The metallic taste came back off and on for months even after the tooth was pulled so it wasn’t. But I stressed huge over it.

 

That IS really interesting about the carbocaine. My hands and feet are ‘still’ sweating 3 months later. It’s not constant anymore but often. That’s what I don’t get. Why do I get hit so hard for so long? I feel like I’m one of the worst of the worst and it scares me so badly. Or does everyone feel this way?

 

My days have been very routine and in survival mode. I too can’t watch tv again.  I play a lot of games on my phone, read hopeful recoveries, take my dog for a walk, eat every 4 hours even when I’m not hungry, house work, phone calls etc... nothing really, most days I’m just on the couch.

 

 

I read lots of recoverie stories too. I spend lots of time digging for other buddies who have had a similar experiences with antibiotics and went on to recover.

 

My hands and feet sweat like crazy. I think it's the only part of my body that is actually capable of sweating right now.

Link to comment
Share on other sites

Hi Guys... :)

 

Its been a while since I Have read a collection of posts that I relate so well to.. Not just the symptom aspects etc, But the whole life effect as well...

 

For those that dont know me, I was very messed up by intense medication well before benzos, and have been playing the WD game for nearly 8yrs one way or the other... Am kinda over it, but here we are...

 

I just wanted to offer validation to the sensitivity and experiences here, But more to voice that it does get better, and it is worth it... Just as when things go bad, as we get better, things also compound towards rebuilding our lives.. Those little choices where we can say yes to life and its activities start to add up, and one thing leads to another...

Its very hard to see at times, but our bodys are extremely good at untangling and healing us from these medicine messes, though as I found, it can take some time and acceptance...

 

Keep up the good work, have faith in yourselves when others doubt you, and above all, remember its the meds, -not the true or normal you...

Life will be full of colour as we paint our new futures...

 

Anyways, Thank you all, Its always good to read from others who "get it"..

 

A merry Christmas to you, But a super, extra awesome, fantastic NEXT Christmas, -A healed one..!!

(Maybe even for me too by then..!! :) )

 

:)

 

Thank you for the encouragement.

I hope next Christmas will be the one!

Link to comment
Share on other sites

I tell you what though, my appetite is back with a vengeances the past couple days. I am craving all the stuff I'm trying to avoid like crazy!
Link to comment
Share on other sites

Thanks cantfly for the encouragement.

 

I’m sorry muddle that you are missing out. Ive thought many times I wish my setback could’ve been after the holidays.

 

I wanted to write I had a great window last night. I watched a Christmas movie, felt totally connected and even teared up a bit at the ending. My brain was quiet, I had emotions of warmth and goodness and felt comfortable. I could breathe so easily. I felt interested in things and my brain worked. All I had was body aches & pains in my legs.

 

Then woke up in the worst wave today. Instantly filled with fear, despair and intrusive thoughts.. The contrast from last night to this morning was so awful. Back to constant coping and just so deflated & hopeless all over again. I get used to the windows so fast and always feel like the worst is behind me, then back to acute suffering. I miss my previous baseline so bad.

 

 

Link to comment
Share on other sites

Thanks cantfly for the encouragement.

 

I’m sorry muddle that you are missing out. Ive thought many times I wish my setback could’ve been after the holidays.

 

I wanted to write I had a great window last night. I watched a Christmas movie, felt totally connected and even teared up a bit at the ending. My brain was quiet, I had emotions of warmth and goodness and felt comfortable. I could breathe so easily. I felt interested in things and my brain worked. All I had was body aches & pains in my legs.

 

Then woke up in the worst wave today. Instantly filled with fear, despair and intrusive thoughts.. The contrast from last night to this morning was so awful. Back to constant coping and just so deflated & hopeless all over again. I get used to the windows so fast and always feel like the worst is behind me, then back to acute suffering. I miss my previous baseline so bad.

 

I was filled with panic as soon as they pulled out of the driveway. Didn't realize I'd be afraid to be alone. So here I lay on the couch trying to ground myself. I am safe. I am in my home. I am fine. All that jazz.

 

And yes. It is so easy to get attached to those windows. Everytime my symptoms lift a little and I think I'm in the clear a wave crashes in once again and I am devastated. They say trust the windows not the waves. Guess that's what we gotta keep doing.

Link to comment
Share on other sites

[ca...]

Hi MF

I really feel for you atm, i know that horrible feeling of being alone with this, before we moved house my hubby was gone at work for 14 hours at a time, even when i was in acute and it was awful beyond belief, i don't know how i got through it, i used to sit with pounding heart and anxiety, terrible dp/dr, the full monty of sxs, terrified of another stroke etc, I managed to get through it by literally ticking off the hours on a sheet of paper as they passed by, i used to say "That's one more hour less" and sometimes i would do a task on the hour, something very small like ironing one garment or washing one plate. It's so awful that a drug can reduce a fully functioning person to that level of minutiae just to survive and then to have the dr tell you it's not wd, well it beggars belief.

 

I think you were very brave to decide not to go with your family, obviously you can contact them at any point to give you a bit of extra grounding so to speak, can you make something for them (a special xmas type something?) so that you are doing something outside of yourself whilst they are gone and they will have something nice from you when they return?. I remember at my almost very worst I spoke with Dr Jennifer Leigh and she told me how she made her garden whilst in the worst acute for months, but she did it so that people passing by could get pleasure from it and after that conversation i started a birth sampler for my daughter's baby, it just compartmentalised the sxs and being alone for a bit and seemed to make them more external.

 

I had a small miracle last night, like you Waiting i had 3 hours of feeling NORMAL, i went to the party and was very nervous as knew nobody but everyone was so lovely and friendly, the location was beautiful and there was a couple of guys playing guitars and a fiddle (this would normally be seriously overstimulating for me) but i so enjoyed it, i actually felt HAPPY, the sxs were still there but somehow they retreated into the background, i couldn't believe it, normally music like that will really set me off and i get very emotionally sad (i was a classical singer in my previous life and the stroke knocked out my ability to sing in that way) but i was ok!!! i can't imagine this normality will continue but at least it happened!

 

Cantfly, g'day cobber! hope you're doing good, thanks so much for your lovely post, all encouragement gratefully accepted!!

Link to comment
Share on other sites

Hi MF

I really feel for you atm, i know that horrible feeling of being alone with this, before we moved house my hubby was gone at work for 14 hours at a time, even when i was in acute and it was awful beyond belief, i don't know how i got through it, i used to sit with pounding heart and anxiety, terrible dp/dr, the full monty of sxs, terrified of another stroke etc, I managed to get through it by literally ticking off the hours on a sheet of paper as they passed by, i used to say "That's one more hour less" and sometimes i would do a task on the hour, something very small like ironing one garment or washing one plate. It's so awful that a drug can reduce a fully functioning person to that level of minutiae just to survive and then to have the dr tell you it's not wd, well it beggars belief.

 

I think you were very brave to decide not to go with your family, obviously you can contact them at any point to give you a bit of extra grounding so to speak, can you make something for them (a special xmas type something?) so that you are doing something outside of yourself whilst they are gone and they will have something nice from you when they return?. I remember at my almost very worst I spoke with Dr Jennifer Leigh and she told me how she made her garden whilst in the worst acute for months, but she did it so that people passing by could get pleasure from it and after that conversation i started a birth sampler for my daughter's baby, it just compartmentalised the sxs and being alone for a bit and seemed to make them more external.

 

I had a small miracle last night, like you Waiting i had 3 hours of feeling NORMAL, i went to the party and was very nervous as knew nobody but everyone was so lovely and friendly, the location was beautiful and there was a couple of guys playing guitars and a fiddle (this would normally be seriously overstimulating for me) but i so enjoyed it, i actually felt HAPPY, the sxs were still there but somehow they retreated into the background, i couldn't believe it, normally music like that will really set me off and i get very emotionally sad (i was a classical singer in my previous life and the stroke knocked out my ability to sing in that way) but i was ok!!! i can't imagine this normality will continue but at least it happened!

 

Cantfly, g'day cobber! hope you're doing good, thanks so much for your lovely post, all encouragement gratefully accepted!!

 

Thanks Southern Star!

 

I sat down and decided to wrap the rest of the girls Christmas gifts. I watched some tv, and have done as much relaxing as possible. The panic actually subsided pretty quickly and I have been ok.most of the afternoon. I am so glad to hear you were able to enjoy your party last night!! That is so great!

Link to comment
Share on other sites

No, Thank you Guys...!!

I have been pushing the lyrica taper pretty hard, and you all grounded me with your proactiveness, logic and acceptance of the reality...

 

Shine on...

 

Hi Southern.. :)

Thank you, Yes Im doing pretty good... :)

-Not liking our heat so much though.. :(

 

Best wishes to you...

:)

 

Link to comment
Share on other sites

[ca...]
Well my little window was shortlived, i was "ok" until this afternoon when a neighbour called over and brought some xmas mince pies, i ate one and within half an hour i started to get a burning sensation all through me and fiery hot sweats, then came anxiety, inner vibration and serious depression and crying. 6 hours later and although the vibrations have gone everything else is still there. God, after such a small amount of sugar, i was never so sensitive until the AB setback, i am going to have to be super careful over the next few  days, it's so hard to scrutinise everything and there's always the possibility that something unsuitable may sneak past. I feel disheartened beyond belief, after the lovely few hours  i had last night. And a big 6 hour trip tomorrow.....
Link to comment
Share on other sites

×
×
  • Create New...