Window.

[[La...]]

[[...]]

9 minutes ago, [[L...] said:

If you were asking me, I just turned 4 years. It takes the brain’s receptors time to heal. IMO I think it’s based off of the amount of injured inflicted. I say this because there’s people who heal faster that have taken the medication for a long time…some of them were older some younger. There’s people who took them a very short while and take years to heal…some older some younger. Some take them, taper and jump off with no little to no WD. 
This makes me believe it’s all based on the injury done. Those injuries could be a little or a lot AND selected certain areas of the brain that got most of the injury. IMO this explains why most of us have certain symptoms that take a longer time to heal than our other symptoms. Time and time again if you read the success stories, you’ll see people who have healed say “ I got better and many symptoms left but I thought this or that one would never leave”. But it did. Just needed more time. I feel this is why I’ve had vestibular issues the whole time and still do. Slowly it has improved. It just makes sense to me that if you line up a row of cans and shoot at them with a slingshot, the one hit would fall over. Ambien hit my vestibular system hard and apparently favored that part of my brain over and over. 

Tha.k you . When did you start to.see improvement.  Why do I feel worse than ever now. Cxxxx

[[La...]]

13 hours ago, [[j...] said:

I sometimes wonder. When we get a window, do you think our brains know that we need a break? Or is it just a fortunate bi product of the way our brains naturally heal themselves... and they dont give a shit if we get a break or not. And I wonder why some people dont get windows, but still heal. 

The brain is always in repair. Even when we were normal, it did repairs when we sleep. I think the way that individual person’s brain heals was just to go at it with repairing. Some of these questions we probably won’t ever really know. All we can do is take the little bit of knowledge we do know and make an educated guess. The brain is so complex and rightly so with it being the master of the body. Maybe someday someone in neuroscience will study this particular recovery process. 

[[...]]

When did you see improvement.  What am I worse than ever.  Xxx

[[jo...]]

Thanks LadyDen, It makes a lot of sense the way you think. It's just unfortunate the unpredictability of the process.

[[...]]

20 hours ago, [[B...] said:

Hey @[...],

I call any time that I feel well or get a break from symptoms, a window.  So, I'd say you had one!  Congrats!!!

Thank you.  Xxx

[[La...]]

[[La...]]

11 minutes ago, [[j...] said:

Thanks LadyDen, It makes a lot of sense the way you think. It's just unfortunate the unpredictability of the process.

Yes you’re welcome. And you’re so right! This is a hot bed of crazy the way this is so nonlinear and unpredictable. But the brain knows what it’s doing. We must trust that and me personally I’m glad it knows how to heal. 

[[...]]

26 minutes ago, [[L...] said:

I started improving to a noticeable degree after my first year. Every year after that I improved gradually with periods of feeling worse. Which I now know that’s when my brain went harder at work to repair. These rougher times is known around here as milestone waves. They’re very common to happen at certain timeframes. They suck but when they’re over, you’ll find that you have a better baseline of your symptoms and even have one or two disappear. Which is evidence that repair was happening even though it felt so bad that you couldn’t tell. Year 2 was still rough but better than 1 but I had two periods of feeling worse. Year 3 was much better with many improvements and symptoms fading completely or turned very mild. I also got new ones in the past 3-4 months headed towards year 4. This is the usual pattern for most people. Getting new symptoms is a good sign. The new symptoms I have are not continuous ones. They pop in and out on my rougher wave days ( about 2 days a week). They’re mild and short lived. I also developed a pattern of my waves as I’ve been healing. My weeks are 3-4 days of feeling decent with mild annoying waves at certain times of the day then a moderate day of waves certain times of the day then 2 days of rougher waves. Repeat each week. My morning dread and night waves were much improved in year 3. 

Thank you.  I have had what feels like continuous waves. What does that mean. Xx

[[La...]]

Dut, how far are you into your recovery?

[[...]]

4 minutes ago, [[L...] said:

Dut, how far are you into your recovery?

3 years. Xx

[[La...]]

[[...]]

Thank you for your time.anxity is also great stomach pain mainly in My groin and hips the more anxious the more pai. 

[[La...]]

[[La...]]

[[Ma...]]

@[La...] Did you know ver feel part of your brain was missing, especially in unfamiliar places? I often feel from 10:00 to midnight is gone 🥹

[[La...]]

1 minute ago, [[M...] said:

@[La...] Did you know ver feel part of your brain was missing, especially in unfamiliar places? I often feel from 10:00 to midnight is gone 🥹

Hi Mary. I’m not sure I understand your question due to part of words missing. Can you ask it again please?

[[Ma...]]

Metaphor: if your brain is round, the area on a clock from 10:00-12:00 seems missing. I know, it doesn’t make any sense…

[[...]]

7 minutes ago, [[L...] said:

Oh yessss my friend. You’re in for a treat in a good way. Most in year 3 sees big improvements. I sure did! How you feel now is so temporary. You wait it out and you’ll reap the rewards. In year 3 I had a setback due to personal family issue. It took me a couple of months to bounce back but when all those terrible waves added up…wow I was so grateful. You will be too….watch and see! What I did was I told myself “ let me wait and see if it’s true that I’ll improve”. And sure enough it proved to be true. I gained my ability to walk again and started being in the car a little bit ( just able to sit in it for 15 minutes at first). I improved more and now walking 30-40 minutes a day as far as I’d like even in a wave. I’ve started practicing driving about 6 months ago. It’s been hit or miss ( mostly miss lol ) but it’s an improvement. I know I’ll be driving again someday soon. This recovery had me in a period in year 3 that my recovery was at a standstill, wasn’t worse wasn’t better. That lasted awhile but it is also common. 

Thank you. Good luck to you. You are lovely. I hope I talk to you again.  Xxxx

[[La...]]

8 minutes ago, [[M...] said:

Metaphor: if your brain is round, the area on a clock from 10:00-12:00 seems missing. I know, it doesn’t make any sense…

Ohhh I see now what you’re asking. I haven’t had that happen BUT I have heard of others mentioning this. Now this is just my opinion on that…

I think at that timeframe the brain is tired from the day’s work so it “ hesitates” to take in anything else so it can get a break. For example, student studying for an exam cramming in information from books. After so long of doing this, the brain will require a break and the student will “ stop” taking in anything that it reads. Once the student try to recall it, it’s missing even though they read it. 
That is the only thing I can think of Mary. It’s a weird symptom. This is known to have weird ones. I’ve even had a couple or few weird ones. Just like all the others it will fade away in time IF it’s not something else going on that has nothing to do with WD. 
somebody had ear pain that gradually got worse and thought it was WD because ear pain/ pressure can be a symptom and has been a symptom for many. After it got worse, they went to the doctor and it was an ear infection. Once treated it was gone. 

[[Ma...]]

Thank you. I’ve had the MRI/CT and 7 hour Neuropsych test-and more labs last week-all ‘fine’. Stupid pills.

Sorry to steal your thread @[...]

[[La...]]

Just now, [[M...] said:

Thank you. I’ve had the MRI/CT and 7 hour Neuropsych test-and more labs last week-all ‘fine’. Stupid pills.

Sorry to steal your thread @[...]

Yep typical of being one of the weird symptoms. All your test were fine so you know what it is. Give it time my dear. 
you’re welcome. 

[[La...]]

One last thing for anyone including myself…

these pills put a good pounding on our receptors ( brain) and disrupted its normal functioning with every pill we took. That’s going to take some time for us to completely heal. But wow am I grateful that my brain CAN and WILL and IS doing this healing. Can you imagine being at your worst acute state and never getting better? When I look at my a acute phase, I’m in utter amazement at how I humanly got through that!!! I’m 4 years off a sleeping pill called Ambien. Counting my taper that’s 5 years with waves/ symptoms. When I look at the bigger picture, would I rather gradually heal and miss a few years of my normal life or be permanently in acute? Ummm I’ll take the gradual healing with the few years it’s taking any day! Then live the rest of my life free of this. Looking at it that way, to me it’s worth it. 

Edited June 22 by [La...]

[[Bu...]]

@[La...],

Oh my goodness, thank you so much for everything you said here!  I needed to hear it so very much today.  I really love the way you explained our healing and I am impressed and humbled by your attitude.

Thank you @[...] for asking the question that got this started!   

[[La...]]

20 hours ago, [[B...] said:

@[La...],

Oh my goodness, thank you so much for everything you said here!  I needed to hear it so very much today.  I really love the way you explained our healing and I am impressed and humbled by your attitude.

Thank you @[...] for asking the question that got this started!   

Hi Ships! You’re very welcome. And don’t think for a minute that I didn’t need to remind myself of this process too. It’s just as much for me as well. Especially this far out, we tend to get so tired of this. Me personally am feeling like I’m at a standstill phase and have been for awhile. In reality, this is not the case. We all are healing everyday and we will continue until the process is complete. Ships, I just hate that for some of us that it takes so long and so slow. I’ll tell you what, if someone had a magic instant heal potion, he or she would be filthy rich! I’d sell my last of whatever to buy it. 
Let’s just continue to hold on a little while longer. We’ve come this far…too far to turn back now! I keep reminding myself that on this road of recovery, there’s nothing down at the end but the end. That’s the only outcome is to be healed. Why do I say that? Because if we were not going to do that then we wouldn’t EVER improve. We’d STILL be in acute. We are past that now! Thank God! We in the longer haul healing group have to hold on to that and stay positive. 
I am glad something was helpful and I echo you in saying I appreciated the question Dut asked. 
I wish you complete healing sooner than later. Hugs 🤗