4 year success stories?

[[Gu...]]

I’m a week away from 36 months, I’m in a brutal wave this evening of headpain backpain, confusion and DPDR. I had an amazing window this morning and most of yesterday where I feel so close to being healed. Then boom I’m back in hell. I’m having windows where I can feel the finish line then boom I’m back in the pit. Anybody have any good success stories from year 3-4? So hard not to loose hope this far out especially cause everybody has healed.

Edited Thursday at 01:05 by [Gu...]

[[fl...]]

Sorry to hear that you are back in a pit of hell.

I am 1 week away from 48 months off and I am in a brutal 3 month wave.  Muscle pain/burning on my right hand side of my body mostly in the abdominal flank and right buttock.  The pain for most of the time is off the charts.

I had a pretty nice 6-8 week window back in April/May and I thought for sure I was over the worst and on the way to finally being healed but no. 

These waves are awful and obviously very depressing.

Hope you feel some relief soon.

[[Gu...]]

13 minutes ago, [[f...] said:

Sorry to hear that you are back in a pit of hell.

I am 1 week away from 48 months off and I am in a brutal 3 month wave.  Muscle pain/burning on my right hand side of my body mostly in the abdominal flank and right buttock.  The pain for most of the time is off the charts.

I had a pretty nice 6-8 week window back in April/May and I thought for sure I was over the worst and on the way to finally being healed but no. 

These waves are awful and obviously very depressing.

Hope you feel some relief soon.

Ya man I can’t work because most of my symptoms are mental it makes it impossible with the confusion and dpdr. 

[[Pa...]]

It sounds like you're close @[Gu...]! My friend started getting windows that would last 2 or 3 weeks then get slammed with symptoms for a week or so.  He'd have another 3 week window, then a wave would hit that only lasted a few days.  This kept playing out until the windows stayed open for months.  He's still susceptible to medication setbacks now but they don't last long and he's learning what he can and can't get away with.

Have you noticed any pattern at all to your windows and waves?

This thread in the archives contains protracted success stories in case you wanted to look through them.

 

 

[[Gu...]]

19 minutes ago, [[P...] said:

It sounds like you're close @[Gu...]! My friend started getting windows that would last 2 or 3 weeks then get slammed with symptoms for a week or so.  He'd have another 3 week window, then a wave would hit that only lasted a few days.  This kept playing out until the windows stayed open for months.  He's still susceptible to medication setbacks now but they don't last long and he's learning what he can and can't get away with.

Have you noticed any pattern at all to your windows and waves?

This thread in the archives contains protracted success stories in case you wanted to look through them.

My windows are always half days or most of the day and they are never full. I’m very rarely symtom free, but much better in my windows. I would be I’d say 50/50 windows and waves from month 31-34.5. Then I got slammed at month 34.5 until month 35.5. I’m just starting to come out of it this week and I’m having hours where I’m completely symtoms free (my best windows) then I get slammed again. Normally all within the same day.

[[Re...]]

17 hours ago, [[G...] said:

I’m a week away from 36 months, I’m in a brutal wave this evening of headpain backpain, confusion and DPDR. I had an amazing window this morning and most of yesterday where I feel so close to being healed. Then boom I’m back in hell. I’m having windows where I can feel the finish line then boom I’m back in the pit. Anybody have any good success stories from year 3-4? So hard not to loose hope this far out especially cause everybody has healed.

I hear you. WIsh I had experience to share. I crossed 24 months off with 20 symptoms and no windows yet. Other than pacing windows from akathisia which has greatly dissipated and the pacing is gone for almost a year now. I don't know what to say other than it sounds like the windows you experience offer some promise.

[[fa...]]

22 hours ago, [[G...] said:

I’m a week away from 36 months, I’m in a brutal wave this evening of headpain backpain, confusion and DPDR. I had an amazing window this morning and most of yesterday where I feel so close to being healed. Then boom I’m back in hell. I’m having windows where I can feel the finish line then boom I’m back in the pit. Anybody have any good success stories from year 3-4? So hard not to loose hope this far out especially cause everybody has healed.

Are you on any other meds?

[[Gu...]]

1 hour ago, [[f...] said:

Are you on any other meds?

No