Medication Induced Setback Support

[[Buddie]]

Thanks [...] for the encouragement.

I’m sorry [...] 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 [...] 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.

[[Buddie]]

Hi [...]
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!

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

[[Buddie]]

Hi [...]
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!

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

Thanks [...]!

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!

[[Buddie]]

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...

[[Buddie]]

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.....

[[Buddie]]

Hi everyone, thanks [...] 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 [...], 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 [...] soon.Love [...] xxx

[[Buddie]]

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 [...]

[[Buddie]]

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

[[Buddie]]

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 [...]. 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 [...] 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.

[[Buddie]]

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 [...]!

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.

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

What a frustrating process!