6-12 month thread....

[[...]]

I feel like I turned a corner the beginning of this month, but the dizziness/lightheadedness doesn't want to leave, and the negative/intrusive thoughts come and go. I seem to be able to get rid of the thoughts most of the time, but when I'm feeling weaker it's sure harder!

 

 

[[No...]]

MommyR ... "Sand bags on my brain.  Sooooooooo weird.  Is this pressure?  Wow, I think my vision is begin affected too." ... that describes an aspect of this last wave I am/was in ... I used the image of someone behind me pressing my ears together ... had issues with sound and vision during the peak parts ... I was going around whispering because I was hearing my voice so loud if I talked normal ... and the dizzies went with it ... it has waxed and waned over the last several days ... kept checking in the mirror because I "sensed" the bones in my skull where shifting ... quite weird ...

 

Hang on ... our Buddy Time will take care of this for us ...

[[li...]]

Hi everyone,

 

Mommyr, I love your attitude!  it is so encouraging even when you are not feeling totally well.

 

peace; you are going to come out of this fully recovered. That I am sure of.

 

Coop, nice to see that you are feeling better. it's that blessed 8th month!

 

jenny, paperboat, GMIT, Drew, Free, Nova, Sky -- I pray for wide open windows and that we all heal sooner than later.

 

I am still in an awesome window but feel a bit stressed today and its not totally a good feeling. I will manage. Stress does not mean a wave -- its just stress. That's all it is  -- I say "so what, who cares!" to my anxieties.

 

life

 

[[Fr...]]

Please say prayers for me.  I am having a rough time with that awful anxiety / depression that is beyond words.  I had a twenty minute window today but that was all.  I am having trouble sleeping then too and wondering how to keep slugging this out with no relief.  It goes on and on and I'm so weary and without hope.

 

Lisa

[[Sk...]]

Lisa, big hugs and prayers from the other side of the Atlantic.

[[Mo...]]

Lisa.. Yup, got you covered.  Prayig

 

Please try to do this 30 minutes at a time.  Don't forecast to this evening.  The day is split into two places.  Day and Night.  Stay in the day right now.  What can you do for the next 30minutes?  I love watching sponge bob.  It's mindless.  However, if I am spiking like you are the activity might be too much for me, so I pick a cooking show.  If you have youtube hit up Joyce Meyers.  Anything positive.  I promise it helps. 

 

You only have to get thru this wave.  That's it.  It will pass. 

 

MommyR

[[Fr...]]

Thank you Sky.  You too.

[[Fr...]]

Thanks MommyR.  I will try.  I am so tired of laying around and feeling awful.

[[Mo...]]

GMIT-

 

Yup, I don't know the rhyme of reason other then the description I think Coop gave.  I will have to look it up.  Like, I am baffled at the sand bags on my brain and the dizzy right now. 

 

The intrusive thoughts only recently went away.  Being weak means I need someone else involved.  I have had to talk back to them 'out loud' to shut them up.  Or I have to talk over them with someone, stay busy until they leave.  If it's night time then the TV goes on or I put headphones on.  Depending on how loud they are I can do it myself or I need others to help.  There was a significant lessening once I went to 95%.  They were no longer a constant presence.  So if that helps.. I had to be 95%.. lame! 

 

Either way, awesome on turning the corner.  It's such a relief to feel the healing happen, right?  It's also confusing to still need help.  That is the part I don't like....needing to get help from others.  It makes me feel weak for some reason.  I think it's been a persistent fear for me during this was being alone.  I want to stand on my own, but it just doesn't work that way sometimes.  I picture people when they talk on here.  GMIT- you sound like you are more healed then not.  Other's sound like they are turning the corner or about to.  Some just need more time.  Nova, he is persistent with a dry humor.  I bet if we heard him talk he would crack a joke and it would take us 5 minutes to realize it. 

 

 

PS.. Does anyone smell crazy stuff when they are in a wave?  It's soooooo annoying.  I either get fireplace smoke or cigarette smoke smells.  It sits in the top of my nostrils.  Ick

 

 

[[dr...]]

Thinking of you free.

 

Sandbags...I call it cement head.  I got hit hard last night. It was like my acute wave about a month ago. It was terrible. The fear, cement head, vibrations, etc...even though I say they are just symptoms of my healing it's a scary place to be. Feeling a bit better today. In bed all day just reading and napping. I have a lot of things to catch up on but they are going to wait until tomorrow. 

Last night was just steady badness. Today it's back to my cycling of feeling bad. Hopefully this will recede further.

 

I like the post about not thinking ahead even to the night. I caught myself" what iffing " last night. What if I can't work Monday, go see a friend tomorrow, if I don't get better... I then said this crap can change as fast as it came on so wht worry how I will feel in an hour. Most time it lessens within an hour or two.  Just something we all have to keep telling ourselves.

 

I can't wait to turn a corner. Happy for everyone who has.

[[Mo...]]

Lisa,

This is going to pass.  I promise it's a time issue.  Can I tell you a story??  What?  You'd love a story??  Great because I am full of them!  My mom told me this during my last wave in June and man did it hit home for me. 

 

 

My mom used to be terrified of earthquakes.  When she was a kid there was a big one and she never got over it.  As an adult she would watch the doors and hanging items on walls everywhere she went.  She was checking for movement incase an earthquake tried to sneak up on her.  This went on for years.  Then a woman bought my mom a trip to Turkey, 'earthquake central'.  During her tour, they needed to go beneath to the catacombs but mom couldn't bring herself to go below.  She was too afraid.  The tour guide instructed her to stay with the bus driver. 

 

As she sat outside the buss feeling sad because she couldn't go beneath, kids and adults came up to her wanting her to take their picture with her polaroid camera.  They were laughing and excited at the wonders of a polaroid picture.  This was in the 70's.  When the tour came back up top, mom was so disappointed she hadn't been able to go below.  Then the guide said they were heading to some more catacombs.  And just like that mom was healed of her fear.  She went and enjoyed herself.

 

Mom said to me, 'you can't paint the color of your healing because it comes in a way you don't expect'.

 

She referenced the cataract surgery she had just had and how the doctor said, 'would you like me to 'heal' your stigmatism too?'.  She was shocked.  An ailment she was born with could be healed just like that?  She said yes and now doesn't have to wear glasses.

 

What color is our healing guys?  One day we are going to wake up and this will be gone.  It probably won't have a neon sign.  We will walk thru our day and do something we haven't been able to do in a long time.  This will be like a distant memory to us.  We can't paint it and say, 'ok, I am going to be healed on this date and time'.  It's going to come when it comes and in it's own way but it's coming. 

 

My mom said to me, "R, one day this will be gone.  It will be gone.'.... Man, I needed that.  She had full confidence and so do I.  Just get thru today.  You don't know the good around the corner.

 

MommyR.

[[Mo...]]

Drew, Nova,

 

Yes, cement head...good description.  The vibrations, yes, had that for a few seconds on waking and wanting to dry heave, but it subsided pretty quickly.  The 'brain pain' thing has been with me thru this process, but this is a lesser version.  I used to get the sensation of a thumb in the center of my brain pressing down until I couldn't move like a squashed bug.  I will take cement over that!  Others have complained of 'melting brain'. 

 

The extreme stuff seems to be shaking down and dividing itself out to distribute differently.  I used to get the choking sensation with depression and an 'anchor' that dropped into my stomach.  They are no longer connected.  I get the chocking sensation on it's own.  No more anchor sensations just nausea here and there.

 

I had burning tongue for awhile too.  That was not good. 

 

This stuff is like the wind.  It blows in and out.  Wait for it to blow out because it always does. 

 

MommyR

[[dr...]]

Yes mommy...I too have had the anchor a lot lately.  Funny thing is almost all of my symptoms post jump are different than my taper.  Cement head, vibrations, dizziness, mild ear pressur tinnitus, and cement head all showed up post jump.

[[Mo...]]

Drew,

Taper vs Jump... way different for me too.  100x more severe then taper.  During my taper I had agoraphobia and severe nausea (lost 30lbs).  I had the benzo flu the whole taper and couldn't leave the house much.  My kids were put in childcare and I did nothing but lay around.  I would get 3 hours of a window the night before I down dosed and then the bus would show up again.  I don't remember a lot.  Oh yeah, I had insomnia with nightmares.  That was fun.  I loved calling the Dr every week and them saying, 'yup, normal'.  They always offered me drugs, so I stopped calling. 

 

Then I took my last pill and the real ride began.  Distinct, severe, separate sensations of fear, panic, depression and anxiety always accompanied by migraine, nausea, chest pain and tightness, insomnia, adrenaline.  Skin peeling off sensations. pain, just indescribable pain.  Chills!!  I would get chills running the lower part of my body only, but not cold chills.  My transition from a wake to asleep was also a long process where I would think I was awake but really asleep.  Scary when you tell your kid to have aunt Yvette move, but aunt Yvette isn't at your house!  I wasn't hallucinating but in a dream state while awake.  I rarely get that now.  Just listing this stuff for you to compare. 

 

The ride begins after the taper.  They don't tell you that because supposedly a slow taper is supposed to dampen the withdrawal symptoms.. Nope! 

 

MommyR 

[[Fr...]]

Thanks MR  for your story.  That's a good metaphor.  I'm happy for your mom and that her eyesight is better now than ever.

 

I guess we don't know what's around the corner.  One more hour, one more day closer to healing.

 

Drew, feel better soon.

 

Lisa

[[pe...]]

Lisa-

I am so sorry you are suffering. I hope it lets up very soon.

 

I am mired in my own version. It's not severe symptoms, and I know they're symptoms so I'm not afraid. But it's constant. The Gingko is giving me trade offs. I've lost some head pressure and cog fog. I've gained some anxiety and awful intrusive thoughts. I'm hoping the thoughts and anxiety settle down in a couple of days. They usually do.

 

Time. Waiting. Day. Then night. Time.

[[je...]]

Hi everyone,

 

Lisa sorry you are having a rough time-- your in my prayers.

Nova- I'm glad to hear you are feeling better.

Mommy-- after this last week of acute I'd say I'm 50%, but before that I was probably 80%.

I don't know if anyone can relate, but I never feel good, its like i could be in a window but I always have an underlying feeling of just being "off". I wonder if that will ever go away.

GMIT, coop, life, peace, sky, Beaulah, Drew and everyone else you are all in my thoughts hope you ar doing good today  :smitten:

[[Fr...]]

Peace, I hope you feel better too.  The intrusive thoughts are awful, I've had them even in partial windows - they revolve around and around.  Hopefully they'll recede for you soon.

 

Jenny, yes, I know what you mean.  Even in the latest semi-windows I felt off but it was ok.  It will go away.

 

 

[[pe...]]

Jenny- I can relate to never feeling good. Except that every once in awhile I do actually feel pretty good. It doesn't last long and I usually feel a little off even when I feel pretty good. It's like a residue combined with hyper vigilance. I hear the residue does burn off over time.

I'm glad you're back to 50% and hope you bounce back to 80% and then beyond soon!

 

[[...]]

Drew and Free, I hope you get relief soon!!

 

Drew, my sxs have been ever changing, get passed one, then something new or the same but "different" comes along! That's what makes me so uncertain of how I will know when I'm healed!

 

Jenny, I think you need to determine what a "window" is to you! My windows are not perfect, or sxs free, but I feel better, I can go and do things with little trouble. That's what a window is for me!

 

Peace, hopefully you get to the good place soon, on your Ginkgo!

 

Mommy, I really like your story!!

 

I feel as though I'm still in my window, but feeling a tad blah..tired. Maybe I will sleep better tonight!

 

Hello everyone else!!

 

[[...]]

I need a 12-18 month thread!

 

Reading through a little of this, and thinking back, I think waves and windows become less severe, and they cycle faster. That's what I'm experiencing right now at 15 months.

 

Gary

[[li...]]

Just a bit of what some of you may be in for in the not to distant future. So today I was going at 120% and I incurred allot of stress. This stress put me in a tough place. Here is what I am seeing that is different -  This stress will not put me in a wave. That is 100% victory. So does that mean that I am healed? I am not ready to say that at all. I am just saying that as I look back a few months I can see that any amount of stress would immediately cause a wave -- now it does not cause waves. That to me is monumental victory as I would avoid doing things just two months ago. I am convinced that there is a definitely a healing pattern going on in this thread. I can almost see the improvement but it comes in the subtle form of a little word here and there in all posts. Healing can not be measured day by day but only through the prism of a few months and time. It seems to be ever so subtle for me.

 

Life

[[Fr...]]

Gary - you give me hope - I'll take less severe right now.  Today is severe.  I thought it was going to lift and it did for about 20 minutes but came right back.  What did turning a corner feel like?

 

Lisa

[[Mo...]]

Free, Peace and Jenny,

 

I like to read the success stories for ideas.  I remember this one guy who couldn't get past 70%.  He had to change his diet to see further improvement.  No coffee, sugar, etc.  Exercise daily.  I did this early in my taper because I couldn't take the intensity of the process.  You might only need to do it for a month to get you to the next level.  I would give it a try.  No fun, but it could work.  Also, I forget if you ladies have had your vit D checked.  Just a thought.  Many many success stories didn't feel better until after a year and they say they didn't do anything but try to keep busy.  No supplements, diets.  There are tons of these stories.  Go on the success stories forum.  You will find everything under the sun with 100%.  Vertigo also has his up there. 

 

I also remember calling one of the fancy detox places who give you supplements, etc.  They said diet too if you are struggling with recovery. 

 

Just a thought.  I"M SORRY THIS IS SO HARD.

[[...]]

Thank you Life! I love hearing that!

 

Lisa, have you turned a corner at all? I did the beginning of this month, things have gotten easier!