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Are symptoms always much worse after a window? Help me please!


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I have been suffering so tremendously lately. I have been getting Windows briefly which is a good thing but then when the window leaves the suffering is so tremendous. Why does this happen? Why does it get so much more intense and unbearable. Yesterday I woke up and the fear kind of came and went and then it went away and it was glorious. Although in the process of all that I had headache and jaw pain. But the loss of fear lasted most of the day and then last night when it was time for bed it came raging back. Anyone else suffering like this? So many symptoms and I'm 18 days away from the two-year mark. I can barely hang on lately. I sure hope I'm close to some kind of turning point. It's just too much! Hugs to all,

 

LiveLife

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I have been suffering so tremendously lately. I have been getting Windows briefly which is a good thing but then when the window leaves the suffering is so tremendous. Why does this happen? Why does it get so much more intense and unbearable. Yesterday I woke up and the fear kind of came and went and then it went away and it was glorious. Although in the process of all that I had headache and jaw pain. But the loss of fear lasted most of the day and then last night when it was time for bed it came raging back. Anyone else suffering like this? So many symptoms and I'm 18 days away from the two-year mark. I can barely hang on lately. I sure hope I'm close to some kind of turning point. It's just too much! Hugs to all,

 

LiveLife

I pray you get more windows and then live your life...

I really pray you do soon...

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Bexlan,

Thank you so much! I can barely hang on. I have so many symptoms and this fear aggravates my stomach so bad it's like it flares it up. It's just the intensity of it is unbearable.

 

LiveLife

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Does everyone feel much worse after having a window? I haven't had too many of them so I'm not exactly sure. Or is this the worse before it gets better? I'm just trying to understand what's happening to me. It's so confusing!

 

LiveLife

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Hey Live, from boomboombox recovery

 

" I would say that around month 29-30, I started noticing some minor improvement in my mental symptoms. Then it really accelerated from months 30-36."

 

Imo you could try something tô adress inflamatóry cytokines, im saying This because months Ago i was dealing with something i Can call as a sort of Brain agony and distress ,

This leaded tô despair like anxiety,  apart from the ongoing symptoms , a diffrent form of distress that itself played a rolê in increasing their severity , a hard tô describe sensation,  It subsided 10 fold, once i started an imunosuppressant / modulator, sadly we dont have easy acess tô such  from doctors as we should,  anyway, i had a peak of symptoms 2 or só months Ago, 14 months, severe distress and now im doing much better  im Still having symptoms, windows and waves, in the same day i get mad and then calm and ease.. but its Constant and Its frustrating, só hold on and stay strong because if You are seeing little improovments Thats How It Goes

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Deinzthekid,

 

Thank you so much for your reply and encouragement. I tried to p.m. you but it wouldn't go through after you sent me the p.m. I really appreciate all of your kindness and support. Hugs!

 

LiveLife

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Yes. I'd always seem to get hammered after feeling like I was getting somewhere. Definitely felt 10x worse.

 

Good to hear you're getting windows tho LL :smitten:

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Havingamare,

 

Thanks for the reply. It really is frustrating because I only had one day of a window and then 4 days of absolute misery and then I had another brief window and some more misery. This is crazy it's hard to hold on. How have you been doing lately? How's your sleep? Hugs

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Havingamare,

 

Thanks for the reply. It really is frustrating because I only had one day of a window and then 4 days of absolute misery and then I had another brief window and some more misery. This is crazy it's hard to hold on. How have you been doing lately? How's your sleep? Hugs

 

I'm getting there slowly. Still have some brain stuff going on. It's only cleared once. But I can tell I'm healing at least. Off to get some stem cells in a couple of weeks, hopefully that will get me over the finish line

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Good to hear that you're improving. How have you been sleeping? What will stem cells do to help you?

 

LiveLife

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Good to hear that you're improving. How have you been sleeping? What will stem cells do to help you?

 

LiveLife

 

My sleep isn't too bad. I get about 6 hours and normally manage another hour later. Stem cells are supposed to heal the brain/CNS. Obviously not much in the way of research for Benzo damage, but there have been plenty of studies for Alzheimer's, Parkinson's, TBI, Stroke etc

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That's great you're getting 6 hours and sometimes more. Very interesting about the stem cells. I hope it helps a lot for you!

 

LiveLife

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That's great you're getting 6 hours and sometimes more. Very interesting about the stem cells. I hope it helps a lot for you!

 

LiveLife

 

Me too lol..... I'll report my results if there are any

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No livelife , I am not suffering like you , but I have. My heart goes out to you. Grit your teeth and tell Mr Benzo where to go . The poison is out of your body and your CNS is desperately trying to recalibrate. Hang on dear friend better days are coming .Music60
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Music,

Thank you so much for your kind words they are greatly appreciated. You give me a lot of Hope. I know you saw improvement at two years out so I'm hoping to see better days coming even if I'm not completely healed. Happy to hear you are doing so well. I look forward to it! Hugs!

 

LiveLife

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  • 2 weeks later...

Hi LiveLife, I can relate to that very much. I haven’t had many windows yet but every time I have symptoms seem to intensify next night and day. Sunday night I slept 7 hours ☺️in the morning I didn’t feel too good but the afternoon was nice and calm. After two hours of sleep back to hell. Severe Agitation with deliberating fear, nerve, bone and muscle pain, brain zaps, weakness… last night zero sleep.. it’s just too much. Try to remember, feel the monday window but it is so far away again.

I once read when symptoms intensify, new ones appear or old ones resurface, this is what it feels like to heal. So we are definitely on our way… hope it will be soon!!! I wish you good healing 🍀

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How are you doing Live. Had my first ever window couple weeks ago after 39 months. Now feel even worse than I did before, so had enough of this!
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Shamrock,

 

Thank you so much for your reply. I'm sorry that you're suffering and struggling so much too. Having these Windows felt good at the time but I am suffering so much now. That's a good point you make about these old symptoms returning and this suffering getting worse that some good healing is taking place. Have to hold on to that thought. It's just so difficult. Hugs!

 

LiveLife

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Leann,

Recently I've had more windows not lasting much more than part of the day. But when the window ends the suffering gets worse than ever. After posting this I see that others have felt much worse after a window and they say that healing is happening. Today I am suffering so much I can barely hang on. In the last couple of months some old symptoms have returned that I haven't had in a year too. So, hopefully that's what's happening for you too you had that window and now even more healing is going on. I have to hang on to that thought. It's just so difficult. Hugs!

 

LiveLife

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It seems to be this way for me , I had like 2 weeks where I was walking my dogs outside in the lovely weather and then boom hit with a wave that has been ongoing for 2 weeks with the relentless something is off feeling and anxiousness
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Good to know others feel the same. Waited 39 months to get a window, then feel worse than I did before following on. Just hope this wasn’t my one and only window.Sorry you are still in the black hole Live. We so deserve a break!
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Fox,

 

Well it's great you were feeling good for two weeks I've never had that long of a window it's always just been part of a day. But I'm sorry that you're struggling now I know the feeling. Hugs!

 

LiveLife

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Leann,

 

I'm sure you had one window that you're going to get more. It's just that when you're suffering so badly it's hard to see it. I completely understand that. Hugs!

 

LiveLife

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Same here LiveLife, I always have one tolerable day followed by a bad day. The better the day is the worse the next day is. Would be nice to have a good string of more than one day.

Hoping your windows get longer.

I remember reading somewhere that as healing moves along you get more good days than bad but the intensity of the bad days stays the same.

But who knows also read the bad days become less severe.

I guess we just have to wait.

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