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Medication Induced Setback Support


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Hi everyone, thanks muddlefoot for starting this thread, l am just 5 months since l took the meds l don’t want that to frighten you because l was put on a steroid as well for good measure, l have had some windows where symptoms ease quite a lot, l have just come out of a 6 day window which made me believe l was on my way but sadly it was not to be although the waves don’t seem as bad but bad enough after feeling better, How many times do you have to be dropped back in a wave before this all stops?when l am in a window l try to enjoy it but at the back of my mind l’m always wondering how long it will last life should not be like this for any of us.....keep posting all of you and l hope you feel better soon.Love Kat xxx
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Hi there everyone, l am still here after 5months from taking the AB and steroids, l have been having windows the last one lasted a week just gone back into a wave the windows are good but l just wish the waves would stop.Wishing you all a speedy recovery Love Kat
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Hi All, still here after 5months post AB and steroids had windows the last one lasted a week but now back in a wave wish the waves would go for good.hope youare doing ok.Love Katxx
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Hi All, still here after 5months post AB and steroids had windows the last one lasted a week but now back in a wave wish the waves would go for good.hope youare doing ok.Love Katxx

 

Glad you found the group kat. A whole week window. That’s great. I’m sorry the waves are still coming. Are they getting less intense as time goes on or the same as after the setback? I know when I feel a little better I’m always scared it’s going to get bad again. Makes planning anything impossible.

 

I had a terrible morning yesterday but a so-so day afterwards. Had this lingering feeling of unease til bedtime. Today also rough morning so far, hopefully it will lighten up as the day goes on. Trying to watch football and I can’t concentrate on it.

 

 

 

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Hi All, still here after 5months post AB and steroids had windows the last one lasted a week but now back in a wave wish the waves would go for good.hope youare doing ok.Love Katxx

 

Hey Katrina!

 

A week long window is awesome!! I know it makes it even harder when the wave comes crashing in though.

 

My morning was pretty rough too, waiting. I woke up with the usual surge and just haven't felt right at all today. It'll be 4 weeks since my setback on the 29th.

 

Southern star! So sorry to hear your window slammed closed! Those sweets will do it everytime! I know for me atleast!

 

What a frustrating process!

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[5e...]

Hi guys......omg i made it, i did it! i have survived xmas and actually enjoyed some of it!! the 6 hour trip there wasn't too good as i was coming out of a wave, but once i got there i was ok, had a lovely seafood picnic on the beach with my son and his now fiance (he got engaged last weekend!). Then came the BIG xmas day at his in laws place, thank god i didn't have a toxic wake up so just relaxed on the balcony of our holiday rental overlooking the ocean until it was time to go.....omg there was so much food!! i had a bit of a panic come on but managed to breathe it away and my son had made me a non alcoholic punch and i managed to avoid the sugary desserts.....and i didn't get any adrenaline surges in the night which was a miracle...

 

today had to go to another lunch before the 6 hour trip back home, bit of a toxic wake up but it passed off, got through lunch in a VERY busy restaurant without any panic and the drive home was ok .....

 

arrived home to 44C heat, omg.....but i'm so proud of myself that i did all that, i know i'll probably get slammed again but the past 3 days have given me some hope that maybe this horrible setback may be starting to really ease up

 

Hope you've all had an ok or better xmas

 

SS x

 

 

 

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SS,

That IS great to hear... Im worn out just reading...!!

If you need to rest some days, thats kinda normal.. -Dont be disheartened..

Job well done..!!

:)

 

 

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Hi guys......omg i made it, i did it! i have survived xmas and actually enjoyed some of it!! the 6 hour trip there wasn't too good as i was coming out of a wave, but once i got there i was ok, had a lovely seafood picnic on the beach with my son and his now fiance (he got engaged last weekend!). Then came the BIG xmas day at his in laws place, thank god i didn't have a toxic wake up so just relaxed on the balcony of our holiday rental overlooking the ocean until it was time to go.....omg there was so much food!! i had a bit of a panic come on but managed to breathe it away and my son had made me a non alcoholic punch and i managed to avoid the sugary desserts.....and i didn't get any adrenaline surges in the night which was a miracle...

 

today had to go to another lunch before the 6 hour trip back home, bit of a toxic wake up but it passed off, got through lunch in a VERY busy restaurant without any panic and the drive home was ok .....

 

arrived home to 44C heat, omg.....but i'm so proud of myself that i did all that, i know i'll probably get slammed again but the past 3 days have given me some hope that maybe this horrible setback may be starting to really ease up

 

Hope you've all had an ok or better xmas

 

SS x

 

 

 

Hi how is everyone doing?

 

Hey Guys!

 

SS, that is so great to hear!! I am so glad you were able to enjoy the holiday with your family. Good job avoiding the sweets!!

 

I had a window open up on Christmas Eve and was able to get through one of our family dinners without much issue. The mornings are always crappy, but it subsided. Same on Christmas day. Crappy morning, but it got better as the day progressed. Until I ate a bunch of chickpeas and the brain fog came back hardcore. This morning I'm kinda blah as to be expected but hoping it will lift soon.

 

How are you doing Katrina?

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I’m glad you guys got through Xmas! I was thinking of you all.

 

MF- you sound like you’re doing really well. I’m glad you got through everything even if feeling blah. I’m sorry about the strep. I’d be like 🙅🏻‍♀️. I’m so scared of getting sick in this condition. Maybe try to eat foods high in vitamin c to keep your immune system strong & no sharing drinking cups & stuff for now.

 

SS- I’m glad you got to enjoy your trip. Congrats on your sons engagement! I avoided all sweets as well even though I really wanted some I was too scared it would make me feel worse. I forget you are in AU and it’s summer there. That heat sounds too hot for me! We are getting supplies for a 2 day blizzard that starts in a couple hours. Supposed to get a 12+ inches of snow & lots of wind.

 

Hope you are doing ok Kat & cantfly.

 

I did it too! Somehow. Christmas Eve I went to a packed church service. Constant panic & intrusives  but got through it. I also had the worst burning nerve pain on my scalp during the whole service which was all I could really focus on. It felt like a hot iron on my scalp! & I swear every single person was wearing perfume & cologne. Had dizziness, jelly legs, etc... the whole panic package. Then went to my family’s dinner/presents thing and didn’t get home til 1 am. I did ok with worse moments, but had symptoms in the background for the most part. Overall it was a better day.

 

Christmas Day didn’t got so hot for me. Woke pretty anxious because this was my fiancé’s side of the family and it’s also more than an hour away. Once we got there I was in a constant panic attack. Then more people kept coming (I thought it would be just a small gathering) & I kept getting all the anxious thoughts. It would lighten up for a bit then come right back. I made it through but it took the whole way home with panic & tears to decompress from the days stress. Got home late last night & slowly felt better. I woke early this morning and wasn’t able to fall back asleep. I’m just exhausted. So much constant anxiety.

 

I know I couldn’t have done any of this even a month ago. Even though it was all really hard, I proved a lot to myself. & I know it meant a lot to my family and fiancé that I was there.

 

But at almost 4 months out from this setback I find myself wondering... how much longer? When will this get easier? Am I doomed forever? Hopeless thoughts Etc etc.

 

 

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[5e...]

Hi everyone

 

Oh MF i'm so sorry your girls have strep throat, it's not just the anxiety about them having it but also the horrible anxiety that you might catch it, i am terrified of getting any illness in this state. Sounds as though you managed Christmas ok though

 

Waiting, you need a medal for going to a packed church service filled with perfume and cologne, and then to go on and do a family dinner/presents thing, well i take my hat off to you, so well done, i know xmas day wasn't so good sx wise but you did it! you made it through! so proud of you! Wow!!

 

Like you i am wondering when this will ever end, last night i woke up with adrenaline surges so i knew the window was closing, this morning i feel terrible, tingling feet, soooo fatigued, benzo flu, shivering attacks, buzzing feeling, background anxiety, crying spells, all the horrible stuff, but i am grateful that i managed to have that bit of a window over xmas, i definitely couldn't have done it a month ago either so i guess that's some improvement, but i'm always scared some really big whammy of a wave is going to hit and swamp me, i read so many stories of people having good windows and then getting slammed back into acute at 18 months out etc, i think it's a lying on the couch day for me today with the air con on and the fan heater, this heat we are getting is 10C above normal, it is predicted for the next 7 days, i would love a blizzard right now!

 

Cantfly, any tips to survive this heat? from one cobber to another?! Hope you had a good xmas, or a good one of sorts at any rate

 

My husband bought me a puppy for xmas (big surprise), very cute but i'm not sure it's a fantastic idea, (a new dress would have been quite enough!), he said he thought looking after it would help with my wd, i suppose he couldn't find the shop that sold new brains...we pick it up in a few days, i think my cat will be horrified, too blah today to even think about naming the little thing

 

Hope you're going ok Katrina

 

Just keeping on keeping on

SS x

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Oh, The pictures you guys have painted..!! Can see the germs and smell the over whelming perfume..!!

 

Fwiw, Echinacia worked well for me if I was around sickies, or something started.. But realy with how different we all are its not worth much... :(

 

SS, I did have to laugh at the puppy present.. I sure understand if you dont quite see the humour..!!

:)

 

Well sitting in the creek with a cold beer is tradition around here... But aircon works well too..!!

Maybe some holes in your Akubra hat..?? Thongs... (we wear them on our feet here in Oz) -but perhaps....?? :)

 

Rest up, Take the time you need...

There was a time there where I would push myself and go bike riding.. How I bounced back would indicate if I was ready to cut again or not.. So yes, It could be an indicator of where one is at, or part of the picture atleast..

 

Must run..

My best to all...

:)

 

 

 

 

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So I was able to get my doctor appointment with my new doctor bumped up to today.

I am feeling very anxious about it. I have seen so many medical professionals over the past couple years, who quite frankly wouldn't know their hind end from a hole in the ground. So yeah. Anxious is probably an understatement.

 

I really just want to make sure this lingering low grade fever isn't related to any kind of infection, since that's how I got in this mess again in the first place. The thought of another medication right now is enough to send me spiralling into hysterics. I'm almost positive it's not, in my logical frame of mind, but I see that state pretty infrequently these days and am dying of a new ailment every other day of course.

 

My morning hasn't been terrible, but I've yet to really have a window where symptoms have vanished completely. I am coming up on a month since my setback and I have to say there have been improvements. I can't always see the forest for the trees though. My symptoms cycle daily, but a lot of things seem to be less severe when they occur. I am hesitant to say that of course.

 

I hope everyone is doing ok.

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[5e...]

Hi MF

Just wanted to say i hope your dr appointment goes/went well, i find it's always anxiety provoking when you go to see a new dr, all those thoughts of, will they listen, will they believe me, will they be judgmental/authoritarian/dictatorial etc, i think it's important to believe in our own truths about our body and hold our own - hopefully this dr will be ok and treat you with respect and kindness.

 

i know what it's like to constantly think you have another ailment, my big fear is of a UTI, i get a lot of bladder spasm making it difficult to pee at times and every time it happens i think, Oh no, a UTI. I've taken at least 3 samples down to the doc's to be tested and i get very anxious waiting for the result (always negative), so i get you.

 

Had a nasty toxic wake up this morning but it passed off really quickly, i guess i just feel blah....

 

Cantfly cobber, i can't wait for the day when i can go down to the river, dangle a line and sit listening to those coldies clinking in the water, oh i wish that day would come......until then i will have to make do with the air con and hope i don't have a heart attack when the bill arrives!

SS x

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Guys I woke up today with some pain and swelling in my lower wisdom tooth. This whole setback was from problems with my other lower wisdom tooth that I had to get extracted.

 

I’m freaking out. What do I do? How to cope? I can NOT go through what I’ve been through the last 4 months again.

 

Damnit!!

 

Am I over reacting? Could it be nothing? It literally came out of nowhere, just woke up with it. I’m so scared I’ll have to do it all again.

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[5e...]

Oh it never effin ends does it, i don't think you're overreacting, you are having what i would call a normal fear response to something that hurt you previously, however, remember that wd amplifies everything we normally feel so that's also why you are freaking out, i would be too.

 

I have had a similar problem with an upper wisdom tooth off and on the past few weeks, (and past few years), swelling and pain that came and went. I tried to ignore it and wait it out, i figure that the longer i wait to get anything done like that the further out in this horrible process i am. It's so dreadful because we can't even take an anti-inflammatory like "normal" people do for stuff like this. And good luck finding a health professional that understands all of this. I used antiseptic mouthwash every 2 hours while mine was problematic. Don't know if it helped much with the actual problem but it made me feel less out of control and anxious

 

I would watch and wait, it may resettle itself in a few days, if anything absolutely needs to be done remember that you were ok with the Carbocaine and the AB was only given as a precaution last time, so you can refuse the AB. My son had all 4 wisdom teeth out and never took an AB, he flushed the sites with salt water every 2 hours and everything was good. He said the pain was pretty terrible though!

 

Breathe and try to  distract as best you can.

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Thank you so much SS. 4 months in hell with this setback & now this!  It’s unbelievable. You are right though. The antibiotic was what caused the hell. The carbocaine just gave me sweats from what I remember. I just don’t want to take anything and just want to heal & not have any more health issues! I don’t want to have to travel that far and go through all that again. I couldn’t take pain meds last time either so it really sucked.

 

I would like to hear more about how yours would flare up. How long would that typically last for you?

 

I’ve been having bad jaw issues since my last extraction (I think my jaw is dislocated). So I’m wondering if maybe my jaw was out of place last night and my top teeth were pressing down on my bottom gums back there making it hurt.

 

I have zero stress tolerance so this took me right out of my partial window I’ve been riding the last few days.

 

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[5e...]

The story of my wisdom teeth goes back about 35 years! I was originally told that i had 4 impacted wisdom teeth that needed to be removed because they would cause me a problem further down the track. They needed to be removed in hospital under anaesthetic. I decided to pass on that as they weren't causing me any problems and i didn't much like the sound of what they were suggesting.

 

Fast forward about 22 years, still no problems, but i was told that the one on the lower right side definitely needed to come out as it had started to press on another tooth and would cause a very bad problem if left. I was sufficiently frightened to spend the AUD$4000 to get it removed in the hospital under anaesthetic.

 

In 2010 i started to get occasional pain and swelling in a tooth that had a crown on the top left side, dentist told me that it was because the impacted wisdom tooth which was lying directly above it was trying to come through and like all the other folks told me it must be removed. I decided to do nothing and after a week or two it all settled down.

 

This tooth has had this pattern ever since, sometimes it has been years without sxs, but when they come they mostly pass off in a few days. About 6 weeks ago the sxs started again and i was terrified that it was going to cause a big problem (last thing i need) but i kept using antiseptic mouthwash every 2 hours and the sxs went away. It has recurred but i think it is because i am biting down hard on it, possibly in my sleep, and it always passes off. I am very careful with it and try not to eat on that side if it feels sore.

 

Who knows if i will eventually have to have it taken out, but i sure as hell know i will do anything to prevent it at this point, i would likely have to have an anaesthetic plus ABs because of the potential for a heart infection to the stroke i had from the severe sxs of rapid tapering so would likely end up in hell again. I've been feeling a bit better over the last 2 weeks, more windows during the day, but nights are still pretty crap. I have very little stress tolerance too and live in absolute  terror of getting some illness or problem that i need to take some medication for, only those who have walked this road could ever understand what that terror feels like and the panic that goes with the thought that something MIGHT be wrong. to me, it's way more than health anxiety, more the terror of  a setback.

 

I also think that benzo wd causes pains in all sorts of places due to the nerves being over excited so i try not to think about any pains i get as being something needing attention, i also research everything before i ever go to a dr to see if there is a non medical way of dealing with it. tbh i think i would have to be very seriously ill before i would go near a dr again.

 

anyway, hope it's easing up for you

 

SS x

 

 

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Thank you so much SS. You always put me at ease. The following day I woke up and the swelling wasn’t worse over that wisdom tooth which was a good sign but I had gum swelling behind my 2 front teeth. Now today all is back to normal. No swelling, no pain, eating fine. Wth was that all about?! Can gum swelling be tied to the cns? Weeeird. Anyways I’m very very glad it’s gone.

 

I’ve been having some better days too. Did I just say that?! Lol am I actually getting somewhere after all these months?? Massive fatigue, spaced out, headaches & nausea have hit (among other things) but it’s more comfortable than the scary mental stuff. Anxiety has been lower but definitely still around all the time. Most of all I’ve been able to actually distract for the first time since this setback. Spending more time watching stupid reality tv episodes and playing games on my phone. It definitely helps.

 

SS-  You and I have opposite worst times of the day. I’m bad from noon to late evening. My nights are usually better. They arent great but I can zone out and my brain gets a break. I know I have a pms wave brewing here soon. I’m certain I’m  in for another 8-10 day horror wave over my next period.

 

I’m so thankful for this group  :smitten:

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