12-18 month support

[[No...]]

Good Morning ... my "wide awake" last night lasted about 11 minutes ... then went dozy and slept for 8 hours ... now crawling up out of the sleep fog and congestion ... pretty good so far ...

 

Going for for a while this morning ...

 

Have a good Thursday ... back later ... 

[[Sk...]]

Well, goofy is a nicer word for it than I use. In this last month my sx can change and swap out within minutes. Yesterday morning I was completely convinced that there was some terrible medical condition killing me. By afternoon. I felt at an 80% baseline, this morning I felt ok when I woke up and is k within a minute of getting up...leveled off....and have since had 2 near panics.  I have been hopeful and optimistic one hour and despairing with intrusive thoughts and memories the next.  ...will be so happy to get to the end of this month. .coop

 

Tell me about it!!  The last 30 days could not have been crazier!  I have been getting visits from side effects I haven't felt in a year, and also visits from SX I have never had before.  (the intense quick waves of dizziness and nausea I spoke of a few days ago) 

 

We have all been pretty active and pretty eclectic with our symptoms lately.  I think that means we're getting close to the end.  Our brains are just about done defragging.  The final touches are being applied at a frantic pace.  It's causing some major disruptions to our thoughts and physical self but all are necessary for us to be repaired.

 

You are so positive, but I can't help thinking that if crazy cycling symptoms meant healing, I would have been healed 6 months ago ! 

 

Hope it's true, I do so hope it's true. 

[[Sk...]]

Well, goofy is a nicer word for it than I use. In this last month my sx can change and swap out within minutes. Yesterday morning I was completely convinced that there was some terrible medical condition killing me. By afternoon. I felt at an 80% baseline, this morning I felt ok when I woke up and is k within a minute of getting up...leveled off....and have since had 2 near panics.  I have been hopeful and optimistic one hour and despairing with intrusive thoughts and memories the next.  ...will be so happy to get to the end of this month. .coop

 

Goofy is an accurate description but it's way too nice ! We are on a rollercoaster, is all and I am ready to get off.

[[Sk...]]

Well, Nova...regarding your earlier question about revving after eating...at the time I answered that I had not experienced too much of that. That was maybe 5 hours ago. I just ate some bread and cheese....my heart took off pounding like a drum and a third round of high octane anxiety...Tomorrow has to be better. ...onward....coop

 

I checked this out some time ago and it explains why we have to eat small portions per meal; our heartbeat, even when we are well, increases when we eat, it's the effort of digesting the food that does it.

In wd, we are more sensitive, our heart makes more of an effort so we feel revved up right after eating.

 

The harder to digest the food is, the more our digestive track makes an effort, the higher the revving.  We aren't only food sensitive we are working harder when we eat. If we were well, we would not notice, though.

[[Sk...]]

Hi to all my 12-18 buddies,

 

Sorry I've neglected you. I've been reading your posts but just don't have it in me to respond. But, I'm so sorry you're hurting.  I think I'm a little depressed. I was so hoping the Flumazenil  treatments would help, but they haven't. I started my 18th month and I'm still suffering with the same symptoms I've had for the last 2 months. Stinging shins that hurt so bad they keep me from sleeping; benzo belly that feels like I'm being crushed by a boa constrictor; boatiness 24/7.  My symptoms sound easy compared to some of you. I don't have anxiety, nausea or dizziness so I feel lucky.  I just wish I could sleep more.

 

I agree with all of you, we will get better. We just have to wait it out while living in hell.  I hope you all get some windows along the way.

 

Korbe, how can you say that ? This is not a competition anyway. I don't think a belly

that feels like I'm being crushed by a boa constrictor

is an easy symptom by the way.

 

I am sorry the treatment did not work, but you were so brave to do it, you put up with fear, uncertainty, anxiety and you rose to the occasion, which shows some strength and healing has been happening in you.

 

I would have been too scared to let anybody get anywhere near me. 

 

I am having a so so day. I woke up feeling tired, yesterday I had a hard day, guess that's what it was. I am going to try to take it easy, truth is, I am tired of analysing this hell we live day in, day out.

 

We are not protracted, no one of us here is protracted. I read a post by a buddie who is at 20 months out, we have all reached a better point in our healing.

I hope this reassures anybody on the thread that today might feel a little more vulnerable.

 

I hope to take a nap later, speak soon. Sending you all  healing thoughts. 

[[No...]]

Hi Sky ... and healing thoughts to you ... 

[[No...]]

Last night when I "woke up" for a few minutes I had about 30 minutes of "clear as a bell" ... haven't had one of those moments since last August ...

 

I was sitting in my chair enjoying the sensation and fell asleep ... oh well ... more of that coming soon ...

 

Had a two hour walk ... felt generally lousy and still enjoyed it ... me, lousy, and goofy decided to wash the patio windows ... that was interesting ... never thought I could get loopy watching a squeegee clean off a window ... oh well ... the windows are spring-cleaned ...

 

Have a good day everyone ... 

[[sa...]]

Yup - the last 30 days have been crazy. I am still struggling to beat back this wave. The anxiety the last couple of days wont let go. I wake up with it and tinnitus and then later about 3pm it's gone. So strange. Still  waiting for a bump up in the baseline, bu so far not happening.

[[Sk...]]

Yup - the last 30 days have been crazy. I am still struggling to beat back this wave. The anxiety the last couple of days wont let go. I wake up with it and tinnitus and then later about 3pm it's gone. So strange. Still  waiting for a bump up in the baseline, bu so far not happening.

 

Sas, have you noticed if you are more or less anxious in the evening or the morning ?

 

Before it used to be worse in the evening, now I am equally anxious throughout the day ! 

 

Speak later, I have a few lessons coming up. 

[[sa...]]

Sky - My anxiety is the worst in the morning and then it slowly dissipates as the day goes on. It has been coming back lately at night around 6pm or so. Noon is my best time and pretty much has been throughout this. In a wave, it's morning to night, but that's a different story.

[[be...]]

Morning all,

I'm feeling a bit better this morning. I thought my boaty days were long gone..haven't had it for months.

While the jack hammer anxiety is still living in me it is milder this am and I hope it's winding down.

 

Sky- You are right on about eating smaller portions...I learned this month's ago...our bodies use energy to digest food and as sensitive as we all are we can feel all of the work that goes into digesting it...feels like a days work.

 

I will try to get some lavender planted today...if my jack hammer allows it.

 

Hang on everyone...healing is ahead!!

[[Co...]]

Sky and Sasq. ...thank you for your posts.. I hate it that several of us are swimming in the soup.  ENOUGH..Your posts are reassuring me that my sx are w/d....Same....return of anxiety that I haven't seen since acute. Mine cycles through the day...  It sets in pretty good first thing in the morning.. Not shaking as bad....and yes, tinnitus, which I had very little of is at a mild hiss all the time. boatyness, health fears...yada yada yada....I am trying to do as as Sky does and not analyze and respond to every body sx.  Difficult as the set off my health fears ( which I don't have in a window.  which are few and far between)..

  ..Trying to live as though I don't have constant anxiety and d/r.......Wishing you both some relief today...You are not alone.. coop

[[Co...]]

Beulah....so glad to hear that you are feeling a little better.. that internal jack hammer is miserable.....My daughter is using lavender in her wedding this summer. It grows all throughout  my complex where I live...makes everything smell wonderful.  I hope you get out in your garden today...

....sending you sunbreaks.  coop

[[No...]]

Sas ... hang on ... this is sometimes crazy stuff we go through day after day ... the breaks are coming ... 

[[No...]]

Hi Coop ... how are you doing today? ...

 

Sitting here listening to the anxiety flowing to and fro after my adventures this morning ...

 

Hope we all get a big break today ... 

[[Gr...]]

Well, Nova...regarding your earlier question about revving after eating...at the time I answered that I had not experienced too much of that. That was maybe 5 hours ago. I just ate some bread and cheese....my heart took off pounding like a drum and a third round of high octane anxiety...Tomorrow has to be better. ...onward....coop

 

I checked this out some time ago and it explains why we have to eat small portions per meal; our heartbeat, even when we are well, increases when we eat, it's the effort of digesting the food that does it.

In wd, we are more sensitive, our heart makes more of an effort so we feel revved up right after eating.

 

The harder to digest the food is, the more our digestive track makes an effort, the higher the revving.  We aren't only food sensitive we are working harder when we eat. If we were well, we would not notice, though.

 

Sky, I'm impressed.  For me, I like knowing why symptoms happen.  It gives me a tiny measure of control, understanding it.  Also, your TBI theory of fatigue, I think about that every time I try to walk or ride my bike, and it makes more and more sense.  This profound fatigue we get, it felt metabolic -- I don't know if that's the word, but some kind of adrenal or Krebb's cycle type of fatigue -- but I always felt it wasn't because it seems to disappear and recur too abruptly for that.  That it occurs from changes in brain wiring makes perfect sense.

I don't think doctors even know why these symptoms happen.  I don't think anyone has bothered to study this, even paws with alcohol and opiates, I really don't think they know too much about it.

[[Gr...]]

Sky and Sasq. ...thank you for your posts.. I hate it that several of us are swimming in the soup.  ENOUGH..Your posts are reassuring me that my sx are w/d....Same....return of anxiety that I haven't seen since acute. Mine cycles through the day...  It sets in pretty good first thing in the morning.. Not shaking as bad....and yes, tinnitus, which I had very little of is at a mild hiss all the time. boatyness, health fears...yada yada yada....I am trying to do as as Sky does and not analyze and respond to every body sx.  Difficult as the set off my health fears ( which I don't have in a window.  which are few and far between)..

  ..Trying to live as though I don't have constant anxiety and d/r.......Wishing you both some relief today...You are not alone.. coop

Coop, I'm with ya.  I've got that hiss going on most of the time, mild, and sometimes it sounds like water is running  The anxiety based stuff started last night, at the ballet.  I felt so anxious I felt like throwing up.  Even though I hadn't eaten, the thought of my dinner filled me with nausea (and I like to eat, buddies, so that's a sx)  but it passed.  I didn't think I would sleep, but I did.  and now I'm just blobbed out again.

 

Oh, and that extreme paranoia, that was a scary few minutes.  I know my brain was reacting to the revving, but still, it makes me marvel, watching myself in real time going through such intense changes.  And we all mostly walk around looking fairly normal when this happens.  Although I was ducking people and trying to get out of the building as quickly as possible.  weirdly paranoid and claustrophobic. 

 

Sky, whatever post you read, the person who is at 20 months, do you remember who it was?

[[ON...]]

It's hard to see that I will actually survive this all. Here's a short list of what i've experienced in just the last three days:

 

-Two nights ago, I was lying on my bathroom floor in so much pain I thought I was dying

-When I try to fall asleep it feels like my brain cuts off and my body jolts up as if my breathing and heart would stop if I didn't consciously do it myself.

-Sensations where I feel like i'm levitating outside of my body

-Sensations that i'm falling over

-Sensation someone poured ice water through my veins

-Waves where every muscle on my body contracts so hard it feels like I could explode

-When I sit still my legs and arms jerk wildly, I sat for an hour on my couch last night and every single body part was jerking uncontrollably as if I was convulsing

-Head bobbling uncontrollably like someone with parkinson's

-Burning skin

-Allergies

-Air hunger/breathlessness

-Inability to take a shower for longer than 5 minutes

-Shooting, stabbing chest pains

-Heart palpitations

-Nausea and dizziness that you would only experience with the worst possible flu

-random bouts of extreme terror, panic that come on for no reason

-a dark energy depression that comes around me at random times

[[sa...]]

One -- Sorry you are having so many sxs. You will find that we all suffer from a host of symptoms. I can relate to the Nausea. That has been my worst symptom to deal with very strong and debilitating. We'll get better, but it takes time and there are many setback along the way as you can see by the large number of us getting hit with really bad waves in months 17-19. Hang in there.

[[ON...]]

These intrusive sensations that completely overpower me every 10 minutes or so are the scariest things ever, I have no way of describing them but holy s#!^ they are unbearable. I don't know how this stuff is even possible, its constant torment and getting worse not better i'm so sorry to be so negative.

[[sa...]]

One -- The mind stuff is really scary. We really are like another person while going through this. You have to remind yourself that this is not you -- not who you are. These thoughts and paranoia are all benzo lies that will once day be gone. They are convincing though when the mind is spinning out of control. In the mean time I find it best to keep the mind busy with anything you can.

 

I found that keeping a schedule for the day and making sure you always doing something is key, even if it's nothing major. You just need to keep the mind occupied or else it slips into crazy thoughts and worst case scenarios.

 

How long have you been off the benzos?

[[ON...]]

Thanks sasquatch! Yeah i do need to find ways to occupy my time, i feel like i have worsened this all by being so inactivce the last two months but damn it is so debilitating and hard not to be consumed by it. I am in my 16th month off, the last two months have been hell. Before that, I wasn't good but I was going out of town, hanging out with friends, etc.

[[Sk...]]

Sky and Sasq. ...thank you for your posts.. I hate it that several of us are swimming in the soup.  ENOUGH..Your posts are reassuring me that my sx are w/d....Same....return of anxiety that I haven't seen since acute. Mine cycles through the day...  It sets in pretty good first thing in the morning.. Not shaking as bad....and yes, tinnitus, which I had very little of is at a mild hiss all the time. boatyness, health fears...yada yada yada....I am trying to do as as Sky does and not analyze and respond to every body sx.  Difficult as the set off my health fears ( which I don't have in a window.  which are few and far between)..

  ..Trying to live as though I don't have constant anxiety and d/r.......Wishing you both some relief today...You are not alone.. coop

Coop, I'm with ya.  I've got that hiss going on most of the time, mild, and sometimes it sounds like water is running  The anxiety based stuff started last night, at the ballet.  I felt so anxious I felt like throwing up.  Even though I hadn't eaten, the thought of my dinner filled me with nausea (and I like to eat, buddies, so that's a sx)  but it passed.  I didn't think I would sleep, but I did.  and now I'm just blobbed out again.

 

Oh, and that extreme paranoia, that was a scary few minutes.  I know my brain was reacting to the revving, but still, it makes me marvel, watching myself in real time going through such intense changes.  And we all mostly walk around looking fairly normal when this happens.  Although I was ducking people and trying to get out of the building as quickly as possible.  weirdly paranoid and claustrophobic. 

 

Sky, whatever post you read, the person who is at 20 months, do you remember who it was?

 

Sue, you should know better than ask me such tricky questions, who do you think I am ?  Superman ? 

 

That will be the true sign of healing, won't it ?

 

Now, on the mentoring group that Fliprain started, join it Sue, it's really inspiring, a buddie posted last night and what she described was pretty bad, none of us has any of that  now. That I know of, of course.

 

At the end of her post she admitted she thought was protracted.

 

You should be able to find her post, it's not like this thread, not as busy.

 

 

 

[[Sk...]]

Thanks sasquatch! Yeah i do need to find ways to occupy my time, i feel like i have worsened this all by being so inactivce the last two months but damn it is so debilitating and hard not to be consumed by it. I am in my 16th month off, the last two months have been hell. Before that, I wasn't good but I was going out of town, hanging out with friends, etc.

 

Oneday, remember, it's your brain not your mind that is doing this. Your brain is sick, it's wounded and it's healing. It's not you, not for a minute.

 

I think what Sas, suggested is a great idea. Keep a schedule even if it's just to water the plants or brush your teeth. You have no idea how a little bit of structure in your day makes the difference, no matter how unimportant,  or light, the actual errands are.

 

It helps the brain heal, your brain needs to feel that there is some sort of order. It puts you in a  position in which you are not waiting for wd to hit again,  hence giving it more attention than necessary and making yourself more vulnerable.

 

Hope you get a break soon.

[[Co...]]

Nova,...yep the simmering, gurgleing, percolating and rattling g anxiety. ...It's been buzzing around me all morning like a hive of bees. My daughter was here this morning and I made an easy simple pasta dish...I was exhausted and thick in cog fog...I usually get a little relief from it in the afternoon...10 minutes, an hour, 20 seconds...then it comes back.

  ..I have been trying to keep busy, but I am so tired by 2 in the afternoon I have to have a nap with the Waltons ....Nova, does your body feel mired in cement  ...like your legs weigh 100 pounds each?......On a better note, my dizziness and nausea are better...still present but not as bad....crossing my fingers

....What did you do when you went out this morning ? ...Are you physically fatigued from brushing your teeth? ...Will we ever be the same?

....chop wood ...carry water....btw...was very glad to hear that you got a brief sunbreak...amazing g how far a little relief will carry us...coop