6-12 month thread....

[Guest [su...]]

thank you jackie we all need peace and health soon. i think of you often i was hoping you would be gone from here.. but as myself we'll just take a little longer..

[[je...]]

Hi guys!

 

Looks like a lot of us are dealing with the same annoying issues. I never would have thought that at 11 months out I would still be having all these sx. I had a great month 6 months out and I just believed I would continue to improve with each month, but it didn't happen that way..  I notice a lot of my physical sx spring up when Im laying in bed at night, anyone else have this? Maybe Im too distracted during the day to notice them. My benzo belly was gone for weeks, but its back again I just notice all my sx are cycling like crazy-one day this sx another day a different one. I really wonder what it all means? Why the constant cycles? My POTS and breathing are really bothering me lately, does anyone else on here have POTS?? Sorry Im rambling, my thoughts are not clear today. So thankful for this thread Jenny

[[li...]]

hey everyone, I pray that all get relief soon. I am in brackish waters -- not a wave not a window -- just tilting toward windows. Been dealing with allot of stress and trying to decompress from it all. I look forward to a really good weekend for all of us. My thoughts today are based on "what am I going to do with my life? How am I going to start making a living again? etc etc... Fears of the future -- but not really fears -- just more on the concern level. I really am in a place where I think I can start enjoying life again BUT I tend to fall back on what if catastrophic tinkling. What is it with that I know these things I worry about are irrelevant but how to stop the pattern? meditation, CBT --trying it all.

 

Life

[[Sk...]]

Hi guys!

 

Looks like a lot of us are dealing with the same annoying issues. I never would have thought that at 11 months out I would still be having all these sx. I had a great month 6 months out and I just believed I would continue to improve with each month, but it didn't happen that way..  I notice a lot of my physical sx spring up when Im laying in bed at night, anyone else have this? Maybe Im too distracted during the day to notice them. My benzo belly was gone for weeks, but its back again I just notice all my sx are cycling like crazy-one day this sx another day a different one. I really wonder what it all means? Why the constant cycles? My POTS and breathing are really bothering me lately, does anyone else on here have POTS?? Sorry Im rambling, my thoughts are not clear today. So thankful for this thread Jenny

 

Jenny, the night, being in bed is always the worst time for my symptoms especially my heart. Most of the buddies I know have this in the day if I understand correctly.

You are not rambling at all, I would know,  I am the queen of rambling!

 

So benzo belly can come and go ? Well, of course I would get the one that does not budge an inch ! 

 

Sorry, I have to rush to bed. I wouldn't want to miss out on my nightly  palp session, would I ?

 

Rest well everybody.

[[Co...]]

Sissie and Green and Jenny...me too...I had some brief relief yesterday but woke up at 330 with headache morbid thoughts head pressure moderate dizziness and shots of anxiety....wanted better from month 10, but it is such a help knowing that others who are 8-11 months off are also having intense waves.  Right now it is only BBs that is getting me through.

.....I had planned a family dinner tonight and trudged through preparing for it but I could not connect to the joy of doing this for my family...but I got it done...ready to go and I didn't die. All my intrusive thoughts center around death and dying ( Naomi Rivers didn't help matters..lol and false thoughts /memories of being a bad mom. I have apologized to my son so many times ..he just looks at me like...again?...again Mom...?....stop this. There is absolutely no way any of our loved ones can understand this unless they have been through it...Its like trying to explain child birth ...to a man...

.....Hold on buddies...we are all experiencing the same thing at the same time in the same phase of healing...it is all healing..I am trying to focus on month 12 and month 14...Christmas and Valentines......We are all getting through this...like Green says,  " We are not losing anyone "....wishing evert one of you healing...Off to grill salmon with my sweet grandsons ..coop

[[Co...]]

Life...hugely encouraging to hear that you are " tilting towards healing "....I follow your footprints like the lost soul that I am. You have had a long wave of stubborn s/x,  depression and up and down cycling....now it sounds like things are starting to turn. I am thrilled for you and it gives me huge huge hope as your persistent wave seemed to set in around month 10.5...that bodes well for the rest of us who are losing heart in months 8-11/12 ......Keep talkin' to us Life....and I am wishing you all healing from here on in.....you so deserve it....love to you Life.....coop

[[Co...]]

Mommy....you are sounding good too....I stepped into month10 yesterday....hoping with all my heart that month 10 might be my last bad very bad terrible no good month. I am gettingba little concerned as I cant remember having a window lasting more than 24 hours. I have had some stretches of decent baseline ..month 7-7.5 was pretty consistently good I think and month 4 was probably the best so far. I am so happy for you that month 10 is looking mild for you. ...Thanks for all the prayers.  Wishing you all sun from this point on to forever.....coop

[[Bi...]]

Hey Coop. What are your main sxs?  I only have tinnitus left and all other sxs are gone so I am pretty happy considering my tinnitus at hellish levels!

 

So what still needs to heal with you?

[[Gr...]]

Thank you for thinking of me Green..

 

Yup, I have been busy getting the house back in order and keeping my oldest on a schedule since school started on Tuesday.  Everyone was used to playing iPads all day, so it's been a rude awakening.  I also wanted to stay off the boards for a bit.  Wow, do I miss you guys!!  We put the Halloween decorations up and I"ve been dabbling in Halloween lunch items for my oldest.  So far I"ve done hard boiled spider eggs and apple peanut butter slices with marshmallows for teeth. 

 

S/x wise, my sleep is still gone.  Fear and panic are the prevailing emotions.  Burning headaches with lots of head and ear pressure.  This is new, but I hear you all describe it so I thought I would validate it's there for me too.  I have a bar of tightness that goes across the base of my skull.  I also have more dizziness and the occasional sensation of being on the ocean.  It is very brief, so not enough to complain about.  I have that cough in my throat and sharp objects are getting shiny again.  The me inside seems to be solid.. my baseline doesn't seem to affected.  While I can break down in tears, there isn't the disconnect I know that happens in a wave.  I do need reassurance, but it's this coexisting thing not a taking over sensation. 

 

The hot flashes are there too, but i think something happened at 4am.  I felt my brain ping like a pebble hit it and then my face tried to flush, but it dispersed quickly.  I am hoping this means a chemical shift has happened.  Will keep you posted.  After I get up and around things burn off and I am very functional.  Today it's a bit heavier, but still moving around in it.  I have read the prior posts and I picture everyone where they are in this.  Green, you said you were driving and were stopped or something and put your head down to cry.  I understand all of this.  So we have months 6 being rough and month 10.  I hit 10 last Thursday, but 9 has proven to be unpleasant too. 

 

Any one know what is going on with this?  Why fear and panic and loss of sleep and hot flashes? 

 

In the mean time I look for the bridge that is always extended to me.  I am standing at the shore watching for it... Something simple but huge that gets me thru.  It could be a word, a song, a whisper in my mind, a smell, a hug from my child, a funny video on FB, a scripture from a friend, a sermon, a flower, a bird.. ANYTHING... and I am watching very closely for it. 

 

We are still praying for everyone.  Sussie.. we are praying for you ... 

 

Lisa (Free).. we are praying for you too ...

 

This has to end eventually.  It has too..

 

Praying for everyone.  It works, I know it does because I get such relief.  I know there is an end to this. 

 

 

MommyR

 

Mommy, it's so nice to think about back-to-school and Halloween, getting the kids on a schedule after the summer,  it sounds so normal

 

I'm hoping that dizziness doesn't morph into anything else.

 

Yes, unbelievably, waves in month 10, big, bad, ugly ones. 

 

Happy to have you back.  Missed you.

 

Green

 

[[Mo...]]

Mommy....you are sounding good too....I stepped into month10 yesterday....hoping with all my heart that month 10 might be my last bad very bad terrible no good month. I am gettingba little concerned as I cant remember having a window lasting more than 24 hours. I have had some stretches of decent baseline ..month 7-7.5 was pretty consistently good I think and month 4 was probably the best so far. I am so happy for you that month 10 is looking mild for you. ...Thanks for all the prayers.  Wishing you all sun from this point on to forever.....coop

 

I was smooth sailing until vacation.  The middle months weren't bad at all.  I had a turning point in March and then in June.  Wasn't it Vertigo that said a survey showed month 10 being rough?  Maybe this is our entry into it and then out the other side we go!!  I am holding out for sure.  Making plans everyday for success.  If the kitchen is clean, I count the day a success!!  Just bought another package of Teechino.  Thinking about you when I sip it.  Making a batch of bone broth for sipping too.  Christmas and Valentines.. Can't wait!!.. 

[[Mo...]]

Thank you for thinking of me Green..

 

Yup, I have been busy getting the house back in order and keeping my oldest on a schedule since school started on Tuesday.  Everyone was used to playing iPads all day, so it's been a rude awakening.  I also wanted to stay off the boards for a bit.  Wow, do I miss you guys!!  We put the Halloween decorations up and I"ve been dabbling in Halloween lunch items for my oldest.  So far I"ve done hard boiled spider eggs and apple peanut butter slices with marshmallows for teeth. 

 

S/x wise, my sleep is still gone.  Fear and panic are the prevailing emotions.  Burning headaches with lots of head and ear pressure.  This is new, but I hear you all describe it so I thought I would validate it's there for me too.  I have a bar of tightness that goes across the base of my skull.  I also have more dizziness and the occasional sensation of being on the ocean.  It is very brief, so not enough to complain about.  I have that cough in my throat and sharp objects are getting shiny again.  The me inside seems to be solid.. my baseline doesn't seem to affected.  While I can break down in tears, there isn't the disconnect I know that happens in a wave.  I do need reassurance, but it's this coexisting thing not a taking over sensation. 

 

The hot flashes are there too, but i think something happened at 4am.  I felt my brain ping like a pebble hit it and then my face tried to flush, but it dispersed quickly.  I am hoping this means a chemical shift has happened.  Will keep you posted.  After I get up and around things burn off and I am very functional.  Today it's a bit heavier, but still moving around in it.  I have read the prior posts and I picture everyone where they are in this.  Green, you said you were driving and were stopped or something and put your head down to cry.  I understand all of this.  So we have months 6 being rough and month 10.  I hit 10 last Thursday, but 9 has proven to be unpleasant too. 

 

Any one know what is going on with this?  Why fear and panic and loss of sleep and hot flashes? 

 

In the mean time I look for the bridge that is always extended to me.  I am standing at the shore watching for it... Something simple but huge that gets me thru.  It could be a word, a song, a whisper in my mind, a smell, a hug from my child, a funny video on FB, a scripture from a friend, a sermon, a flower, a bird.. ANYTHING... and I am watching very closely for it. 

 

We are still praying for everyone.  Sussie.. we are praying for you ... 

 

Lisa (Free).. we are praying for you too ...

 

This has to end eventually.  It has too..

 

Praying for everyone.  It works, I know it does because I get such relief.  I know there is an end to this. 

 

 

MommyR

 

Mommy, it's so nice to think about back-to-school and Halloween, getting the kids on a schedule after the summer,  it sounds so normal

 

I'm hoping that dizziness doesn't morph into anything else.

 

Yes, unbelievably, waves in month 10, big, bad, ugly ones. 

 

Happy to have you back.  Missed you.

 

Green

 

No morphing allowed!!  haha.  Yes, I am looking forward with a plan much like Sky.  I am going to take an app development class and looking into the counseling certificate.  The school website peeps haven't given up on me.  Got my hair done.. WHICH REMINDS ME.. I found a product by CHI.  It's called silk infusion.  I put it in my sad, dry, brittle hair and it was silky smooth.  My hair is thick (or it was) and wavy (on steroids if you add the new crazy cowlicks )  I had to get the front of my hair layered because it was dry and damaged.  Managed to get it colored finally yesterday.

 

Anyways, wanted to pass the hair product info on.  After finding a coffee replacement and hair product I almost feel pretty again.  Now for all the pounds I am packing back on.  WHAT IS UP WITH THAT?? 

[[Gr...]]

Hi guys!

 

Looks like a lot of us are dealing with the same annoying issues. I never would have thought that at 11 months out I would still be having all these sx. I had a great month 6 months out and I just believed I would continue to improve with each month, but it didn't happen that way..  I notice a lot of my physical sx spring up when Im laying in bed at night, anyone else have this? Maybe Im too distracted during the day to notice them. My benzo belly was gone for weeks, but its back again I just notice all my sx are cycling like crazy-one day this sx another day a different one. I really wonder what it all means? Why the constant cycles? My POTS and breathing are really bothering me lately, does anyone else on here have POTS?? Sorry Im rambling, my thoughts are not clear today. So thankful for this thread Jenny

 

Jenny, POTS is that orthostatic intolerance?  I don't have it now, but I did in the past.  Meaning when you stand up you feel like you're going to pass out?  Can't stand in lines too long, feel like you're going to hit the deck?  Your BP might be a little low.  Maybe drink a tspn of sea salt in water.  This has helped me.

 

Breathing trouble?  You mean shortness of breath?  Can't take a full deep breath?  That's the cortisol surging, the anxiety.

 

The nurse I met who went through this w/d 10 years ago told me we go through those cortisol surges with all of the related s/x, and then we run out of cortisol and get the related fatigue, depression, all of the related s/x, and then start all over again.  You said it was a vicious cycle, you're absolutely right.  I kind of suspected that using up so much cortisol, the stress response, I guess, from up-regulated glutamate, was responsible for the fatigue and depression and achy muscles.  Like you, Jenny, I was in bed for months.  This absolutely sucks.  But my nurse friend had it really bad, and she swears to me she's 100% healed.  She's going for a master's, working full time. 

 

Hoping you feel better soon. 

[[Gr...]]

hey everyone, I pray that all get relief soon. I am in brackish waters -- not a wave not a window -- just tilting toward windows. Been dealing with allot of stress and trying to decompress from it all. I look forward to a really good weekend for all of us. My thoughts today are based on "what am I going to do with my life? How am I going to start making a living again? etc etc... Fears of the future -- but not really fears -- just more on the concern level. I really am in a place where I think I can start enjoying life again BUT I tend to fall back on what if catastrophic tinkling. What is it with that I know these things I worry about are irrelevant but how to stop the pattern? meditation, CBT --trying it all.

 

Life

 

Does the meditation help?

[[Gr...]]

Thank you for thinking of me Green..

 

Yup, I have been busy getting the house back in order and keeping my oldest on a schedule since school started on Tuesday.  Everyone was used to playing iPads all day, so it's been a rude awakening.  I also wanted to stay off the boards for a bit.  Wow, do I miss you guys!!  We put the Halloween decorations up and I"ve been dabbling in Halloween lunch items for my oldest.  So far I"ve done hard boiled spider eggs and apple peanut butter slices with marshmallows for teeth. 

 

S/x wise, my sleep is still gone.  Fear and panic are the prevailing emotions.  Burning headaches with lots of head and ear pressure.  This is new, but I hear you all describe it so I thought I would validate it's there for me too.  I have a bar of tightness that goes across the base of my skull.  I also have more dizziness and the occasional sensation of being on the ocean.  It is very brief, so not enough to complain about.  I have that cough in my throat and sharp objects are getting shiny again.  The me inside seems to be solid.. my baseline doesn't seem to affected.  While I can break down in tears, there isn't the disconnect I know that happens in a wave.  I do need reassurance, but it's this coexisting thing not a taking over sensation. 

 

The hot flashes are there too, but i think something happened at 4am.  I felt my brain ping like a pebble hit it and then my face tried to flush, but it dispersed quickly.  I am hoping this means a chemical shift has happened.  Will keep you posted.  After I get up and around things burn off and I am very functional.  Today it's a bit heavier, but still moving around in it.  I have read the prior posts and I picture everyone where they are in this.  Green, you said you were driving and were stopped or something and put your head down to cry.  I understand all of this.  So we have months 6 being rough and month 10.  I hit 10 last Thursday, but 9 has proven to be unpleasant too. 

 

Any one know what is going on with this?  Why fear and panic and loss of sleep and hot flashes? 

 

In the mean time I look for the bridge that is always extended to me.  I am standing at the shore watching for it... Something simple but huge that gets me thru.  It could be a word, a song, a whisper in my mind, a smell, a hug from my child, a funny video on FB, a scripture from a friend, a sermon, a flower, a bird.. ANYTHING... and I am watching very closely for it. 

 

We are still praying for everyone.  Sussie.. we are praying for you ... 

 

Lisa (Free).. we are praying for you too ...

 

This has to end eventually.  It has too..

 

Praying for everyone.  It works, I know it does because I get such relief.  I know there is an end to this. 

 

 

MommyR

 

Mommy, it's so nice to think about back-to-school and Halloween, getting the kids on a schedule after the summer,  it sounds so normal

 

I'm hoping that dizziness doesn't morph into anything else.

 

Yes, unbelievably, waves in month 10, big, bad, ugly ones. 

 

Happy to have you back.  Missed you.

 

Green

 

No morphing allowed!!  haha.  Yes, I am looking forward with a plan much like Sky.  I am going to take an app development class and looking into the counseling certificate.  The school website peeps haven't given up on me.  Got my hair done.. WHICH REMINDS ME.. I found a product by CHI.  It's called silk infusion.  I put it in my sad, dry, brittle hair and it was silky smooth.  My hair is thick (or it was) and wavy (on steroids if you add the new crazy cowlicks )  I had to get the front of my hair layered because it was dry and damaged.  Managed to get it colored finally yesterday.

 

Anyways, wanted to pass the hair product info on.  After finding a coffee replacement and hair product I almost feel pretty again.  Now for all the pounds I am packing back on.  WHAT IS UP WITH THAT??

M,

 

Is silk infusion a dye?  Mine is so dry I'm afraid to dye it, but I know I'll feel better when I do, and get a cut.  I just keep trimming the damaged dry stuff.

 

What kind of counseling certificate?

 

And, yes, the pounds are piling.  I have no idea what is up with that 

[[je...]]

Hi guys!

 

Looks like a lot of us are dealing with the same annoying issues. I never would have thought that at 11 months out I would still be having all these sx. I had a great month 6 months out and I just believed I would continue to improve with each month, but it didn't happen that way..  I notice a lot of my physical sx spring up when Im laying in bed at night, anyone else have this? Maybe Im too distracted during the day to notice them. My benzo belly was gone for weeks, but its back again I just notice all my sx are cycling like crazy-one day this sx another day a different one. I really wonder what it all means? Why the constant cycles? My POTS and breathing are really bothering me lately, does anyone else on here have POTS?? Sorry Im rambling, my thoughts are not clear today. So thankful for this thread Jenny

 

Jenny, POTS is that orthostatic intolerance?  I don't have it now, but I did in the past.  Meaning when you stand up you feel like you're going to pass out?  Can't stand in lines too long, feel like you're going to hit the deck?  Your BP might be a little low.  Maybe drink a tspn of sea salt in water.  This has helped me.

 

Breathing trouble?  You mean shortness of breath?  Can't take a full deep breath?  That's the cortisol surging, the anxiety.

 

The nurse I met who went through this w/d 10 years ago told me we go through those cortisol surges with all of the related s/x, and then we run out of cortisol and get the related fatigue, depression, all of the related s/x, and then start all over again.  You said it was a vicious cycle, you're absolutely right.  I kind of suspected that using up so much cortisol, the stress response, I guess, from up-regulated glutamate, was responsible for the fatigue and depression and achy muscles.  Like you, Jenny, I was in bed for months.  This absolutely sucks.  But my nurse friend had it really bad, and she swears to me she's 100% healed.  She's going for a master's, working full time. 

 

Hoping you feel better soon. 

 

 

 

Yes Green! I feel so dizzy when I stand up and my heart rate goes from 70bpm to 100 BPM, and I can't get a deep breath of air it feels like someone is sitting on my chest.  My memory is so bad that I can't remember if I had it pre benzo, but I don't think I did-- my earliest memory is when I was in tolerance, so I'm hoping it goes away when I heal. It is so cool that you have that nurse friend that has been through it. How long did it take her to heal?  Thanks for everything, jenny

[[Gr...]]

Hi guys!

 

Looks like a lot of us are dealing with the same annoying issues. I never would have thought that at 11 months out I would still be having all these sx. I had a great month 6 months out and I just believed I would continue to improve with each month, but it didn't happen that way..  I notice a lot of my physical sx spring up when Im laying in bed at night, anyone else have this? Maybe Im too distracted during the day to notice them. My benzo belly was gone for weeks, but its back again I just notice all my sx are cycling like crazy-one day this sx another day a different one. I really wonder what it all means? Why the constant cycles? My POTS and breathing are really bothering me lately, does anyone else on here have POTS?? Sorry Im rambling, my thoughts are not clear today. So thankful for this thread Jenny

 

Jenny, POTS is that orthostatic intolerance?  I don't have it now, but I did in the past.  Meaning when you stand up you feel like you're going to pass out?  Can't stand in lines too long, feel like you're going to hit the deck?  Your BP might be a little low.  Maybe drink a tspn of sea salt in water.  This has helped me.

 

Breathing trouble?  You mean shortness of breath?  Can't take a full deep breath?  That's the cortisol surging, the anxiety.

 

The nurse I met who went through this w/d 10 years ago told me we go through those cortisol surges with all of the related s/x, and then we run out of cortisol and get the related fatigue, depression, all of the related s/x, and then start all over again.  You said it was a vicious cycle, you're absolutely right.  I kind of suspected that using up so much cortisol, the stress response, I guess, from up-regulated glutamate, was responsible for the fatigue and depression and achy muscles.  Like you, Jenny, I was in bed for months.  This absolutely sucks.  But my nurse friend had it really bad, and she swears to me she's 100% healed.  She's going for a master's, working full time. 

 

Hoping you feel better soon. 

 

 

 

Yes Green! I feel so dizzy when I stand up and my heart rate goes from 70bpm to 100 BPM, and I can't get a deep breath of air it feels like someone is sitting on my chest. My memory is so bad that I can't remember if I had it pre benzo, but I don't think I did-- my earliest memory is when I was in tolerance, so I'm hoping it goes away when I heal. It is so cool that you have that nurse friend that has been through it. How long did it take her to heal?  Thanks for everything, jenny

 

Jen,

 

Unable to get a breath of air, that tight chest, it's classic.  I used to call it cement chest.  That's a horrible s/x from acute.  I had that a long time, and it's an awful scary uncomfortable s/x.  And because I couldn't get a deep breath, I was huffing and puffing, I would get out of breath just walking from here to there, couldn't talk and walk.  The OI on top of it is just brutal, esp. this far out.  Just hang on as best you can.  Hopefully it will pass.  It seems like the s/x cycle like crazy now.

 

Yes, I was very fortunate to meet this nurse. I already know  a lot of what she knows. What she helps me with is how to deal with people in my life -- when to act normal, fake it, when to push, when to go home and hit the couch. 

 

Hope this passes soon

 

 

 

 

[[Gr...]]

Jenny, she said two years for 100%.  But that she was much better at around 14 months.

[[Mo...]]

Hi guys!

 

Looks like a lot of us are dealing with the same annoying issues. I never would have thought that at 11 months out I would still be having all these sx. I had a great month 6 months out and I just believed I would continue to improve with each month, but it didn't happen that way..  I notice a lot of my physical sx spring up when Im laying in bed at night, anyone else have this? Maybe Im too distracted during the day to notice them. My benzo belly was gone for weeks, but its back again I just notice all my sx are cycling like crazy-one day this sx another day a different one. I really wonder what it all means? Why the constant cycles? My POTS and breathing are really bothering me lately, does anyone else on here have POTS?? Sorry Im rambling, my thoughts are not clear today. So thankful for this thread Jenny

 

Jenny, POTS is that orthostatic intolerance?  I don't have it now, but I did in the past.  Meaning when you stand up you feel like you're going to pass out?  Can't stand in lines too long, feel like you're going to hit the deck?  Your BP might be a little low.  Maybe drink a tspn of sea salt in water.  This has helped me.

 

Breathing trouble?  You mean shortness of breath?  Can't take a full deep breath?  That's the cortisol surging, the anxiety.

 

The nurse I met who went through this w/d 10 years ago told me we go through those cortisol surges with all of the related s/x, and then we run out of cortisol and get the related fatigue, depression, all of the related s/x, and then start all over again.  You said it was a vicious cycle, you're absolutely right.  I kind of suspected that using up so much cortisol, the stress response, I guess, from up-regulated glutamate, was responsible for the fatigue and depression and achy muscles.  Like you, Jenny, I was in bed for months.  This absolutely sucks.  But my nurse friend had it really bad, and she swears to me she's 100% healed.  She's going for a master's, working full time. 

 

Hoping you feel better soon. 

 

Do you think my hot flashes are the cortisol thing too?  Wish I could talk to her.  I just can't see menopause causing fear and anxiety.  Nor am I convinced I"m in menopause.  As this is new since the vacation.

[[Mo...]]

Thank you for thinking of me Green..

 

Yup, I have been busy getting the house back in order and keeping my oldest on a schedule since school started on Tuesday.  Everyone was used to playing iPads all day, so it's been a rude awakening.  I also wanted to stay off the boards for a bit.  Wow, do I miss you guys!!  We put the Halloween decorations up and I"ve been dabbling in Halloween lunch items for my oldest.  So far I"ve done hard boiled spider eggs and apple peanut butter slices with marshmallows for teeth. 

 

S/x wise, my sleep is still gone.  Fear and panic are the prevailing emotions.  Burning headaches with lots of head and ear pressure.  This is new, but I hear you all describe it so I thought I would validate it's there for me too.  I have a bar of tightness that goes across the base of my skull.  I also have more dizziness and the occasional sensation of being on the ocean.  It is very brief, so not enough to complain about.  I have that cough in my throat and sharp objects are getting shiny again.  The me inside seems to be solid.. my baseline doesn't seem to affected.  While I can break down in tears, there isn't the disconnect I know that happens in a wave.  I do need reassurance, but it's this coexisting thing not a taking over sensation. 

 

The hot flashes are there too, but i think something happened at 4am.  I felt my brain ping like a pebble hit it and then my face tried to flush, but it dispersed quickly.  I am hoping this means a chemical shift has happened.  Will keep you posted.  After I get up and around things burn off and I am very functional.  Today it's a bit heavier, but still moving around in it.  I have read the prior posts and I picture everyone where they are in this.  Green, you said you were driving and were stopped or something and put your head down to cry.  I understand all of this.  So we have months 6 being rough and month 10.  I hit 10 last Thursday, but 9 has proven to be unpleasant too. 

 

Any one know what is going on with this?  Why fear and panic and loss of sleep and hot flashes? 

 

In the mean time I look for the bridge that is always extended to me.  I am standing at the shore watching for it... Something simple but huge that gets me thru.  It could be a word, a song, a whisper in my mind, a smell, a hug from my child, a funny video on FB, a scripture from a friend, a sermon, a flower, a bird.. ANYTHING... and I am watching very closely for it. 

 

We are still praying for everyone.  Sussie.. we are praying for you ... 

 

Lisa (Free).. we are praying for you too ...

 

This has to end eventually.  It has too..

 

Praying for everyone.  It works, I know it does because I get such relief.  I know there is an end to this. 

 

 

MommyR

 

Mommy, it's so nice to think about back-to-school and Halloween, getting the kids on a schedule after the summer,  it sounds so normal

 

I'm hoping that dizziness doesn't morph into anything else.

 

Yes, unbelievably, waves in month 10, big, bad, ugly ones. 

 

Happy to have you back.  Missed you.

 

Green

 

No morphing allowed!!  haha.  Yes, I am looking forward with a plan much like Sky.  I am going to take an app development class and looking into the counseling certificate.  The school website peeps haven't given up on me.  Got my hair done.. WHICH REMINDS ME.. I found a product by CHI.  It's called silk infusion.  I put it in my sad, dry, brittle hair and it was silky smooth.  My hair is thick (or it was) and wavy (on steroids if you add the new crazy cowlicks )  I had to get the front of my hair layered because it was dry and damaged.  Managed to get it colored finally yesterday.

 

Anyways, wanted to pass the hair product info on.  After finding a coffee replacement and hair product I almost feel pretty again.  Now for all the pounds I am packing back on.  WHAT IS UP WITH THAT??

M,

 

Is silk infusion a dye?  Mine is so dry I'm afraid to dye it, but I know I'll feel better when I do, and get a cut.  I just keep trimming the damaged dry stuff.

 

What kind of counseling certificate?

 

And, yes, the pounds are piling.  I have no idea what is up with that 

 

No dye!  Just a wonderful, silky clear substance.  I found it at Marshalls.  I wash, condition then put this stuff in and blow dry.  I also have to straighten my hair because of all the waves.  It's shiny and silky.  I used to use a product called Glass by Redkin, but they don't make it anymore.  I tried Biosilk from Target, but it's too heavy and sticky.  Here it is on Amazon.  It is truly a miracle. Read the reviews!!  http://www.amazon.com/Infusion-Leave-In-Treatment-Unisex-CHI/dp/B00103DUZS/ref=sr_1_1?s=beauty&ie=UTF8&qid=1409969890&sr=1-1&keywords=chi+silk+infusion  It's shows $23 at Amazon, but I found it for $9 at Marshalls. 

 

I also put heavy heavy conditioner on my hair..  Moisture Maniac by TGI.  I buy it at Target. 

 

Here's to spending money! 

 

Also, for benzo belly there is a product called UtraInflamX 360 plus by Metagenics.  I used it when I was first diagnosed with IC.  It is medical food for people with celiac, etc.  It's not cheap, but really good stuff.  http://www.amazon.com/Metagenics-UltraInflamX-Medical-Pineapple-Banana/dp/B001ECTX88/ref=pd_rhf_sc_p_img_12 

[[Co...]]

Hi Bird! ...I remember you from last summer when I was tapering. Very happy to hear that except for tinnitus your s/x are almost gone...although tinnitus is no small thing.

.....I stepped into month 10 on Wed. ...The s/x that is giving me the most grief is head pressure...frequent headaches and dizziness. It was just head pressure until 10 days ago when I got hit with rotational vertigo and nausea. Its either w/d or a recurrence of an inner ear virus...either way it completely triggers intrusive health fears with anxiety and mini panics. It is discouraging at the moment ....and scary. Month 9 was really really tough. Hoping month 10 is better. If not for thechead pressure my baseline would be a reliable 70-75%. My most difficult months were months 3, 6 and 9. ...I know we all heal,  I just never in a million years thought it would be this brutal.

....So nice to see you on this thread Bird.....coop

[[Sk...]]

Hi everybody, just a quick update.

 

Today seemed like an average day , just a few moments of my heart skipping beats . I find it scary even if I know, know, know that it is ok, nothing is happening, it's wd.

I just decided to return a book to the library, it is a wonderful day so why miss it ? The library is just round the corner. Anyway, that is what I did. Returned the book and checked another on out.

 

Now, I feel like my brain has shut down and I can't do one more thing. My head aches so I will finish writing this and rest  a little.

I understand not overdoing it, but here I definitely didn't overdo anything.

 

Oh well, why am I so surprised ?

 

At this point I should know better !

 

I hope it gets better so as not to spoil the weekend.

 

So I am headed to the sofa. I can barely keep my eyes open.

 

ANyway, great reading your updates. Take care and heal !

[[mr...]]

Hey all Mrs here!

 

Just stopping by to say hi I listened to a Joel Osteen audio on YouTube this morning that was awesome! It does have a "Christian" theme to it, but its message about fear was very good. If you want to listen, its called: "Joel Osteen Break the bondage of fear"

 

Hope everyone is well! Healing is happening and is very real! Praise God! ,Take care,

 

Mrs.

[[Gr...]]

Hi everybody, just a quick update.

 

Today seemed like an average day , just a few moments of my heart skipping beats . I find it scary even if I know, know, know that it is ok, nothing is happening, it's wd.

I just decided to return a book to the library, it is a wonderful day so why miss it ? The library is just round the corner. Anyway, that is what I did. Returned the book and checked another on out.

 

Now, I feel like my brain has shut down and I can't do one more thing. My head aches so I will finish writing this and rest  a little.

I understand not overdoing it, but here I definitely didn't overdo anything.

 

Oh well, why am I so surprised ?

 

At this point I should know better !

 

I hope it gets better so as not to spoil the weekend.

 

So I am headed to the sofa. I can barely keep my eyes open.

 

ANyway, great reading your updates. Take care and heal !

 

Sky, hang on.  This month is a tough one.  Feel better.

[[Gr...]]

Hi guys!

 

Looks like a lot of us are dealing with the same annoying issues. I never would have thought that at 11 months out I would still be having all these sx. I had a great month 6 months out and I just believed I would continue to improve with each month, but it didn't happen that way..  I notice a lot of my physical sx spring up when Im laying in bed at night, anyone else have this? Maybe Im too distracted during the day to notice them. My benzo belly was gone for weeks, but its back again I just notice all my sx are cycling like crazy-one day this sx another day a different one. I really wonder what it all means? Why the constant cycles? My POTS and breathing are really bothering me lately, does anyone else on here have POTS?? Sorry Im rambling, my thoughts are not clear today. So thankful for this thread Jenny

 

Jenny, POTS is that orthostatic intolerance?  I don't have it now, but I did in the past.  Meaning when you stand up you feel like you're going to pass out?  Can't stand in lines too long, feel like you're going to hit the deck?  Your BP might be a little low.  Maybe drink a tspn of sea salt in water.  This has helped me.

 

Breathing trouble?  You mean shortness of breath?  Can't take a full deep breath?  That's the cortisol surging, the anxiety.

 

The nurse I met who went through this w/d 10 years ago told me we go through those cortisol surges with all of the related s/x, and then we run out of cortisol and get the related fatigue, depression, all of the related s/x, and then start all over again.  You said it was a vicious cycle, you're absolutely right.  I kind of suspected that using up so much cortisol, the stress response, I guess, from up-regulated glutamate, was responsible for the fatigue and depression and achy muscles.  Like you, Jenny, I was in bed for months.  This absolutely sucks.  But my nurse friend had it really bad, and she swears to me she's 100% healed.  She's going for a master's, working full time. 

 

Hoping you feel better soon. 

 

Do you think my hot flashes are the cortisol thing too?  Wish I could talk to her.  I just can't see menopause causing fear and anxiety.  Nor am I convinced I"m in menopause.  As this is new since the vacation.

 

The hot flashes are ABSOLUTELY cortisol surges. I can actually feel the surge and the anxiety before the soaking sweat.  M, I swear to you, meno hot flashes, another animal completely.  I know.  I remember.  don't worry.  You are not in early meno!  Also, thanks for hair product tips.  I need something or I'm gonna have a California wildfire on my head.

[[Gr...]]

Hi, hope everyone is feeling a little better today.

 

Rough night, couldn't fall asleep until 6:30 a.m.  But this month 10 is so crazy, I felt unbelievably bad when I woke up at 10, and just feel tired and knocked out, but clear headed, now.  My friend is coming to pick me up for the beach.  He loves going.  I feel better when I get out, so I'm grateful he picks me up and drags me around.  I'm trying very hard not to flip out, lose it, but this wave is a *&(@#$)&^  beast.  I can't keep up with the wild cycling s/x.  As Sky said in her last post, I can't make my life much simpler than it is.  I haven't gone food shopping, cleaned.  Coop had it right, we're going to heal when we do, and nothing we do or don't will change the timeline.  The only control we have is how we survive in that time.

 

Feel better, everybody.  C U later.