The Long Hold Support Group

[[ly...]]

 

 

Heath,

 

I have a few things that I think will be sticking around for a long time.  These don't prevent me from cutting.  Tinnitus, neck tension/pain, tingling in lower legs and feet.  I think that's it (?).  I've had these pretty much since the beginning.  They might be permanent.

[[He...]]

OH SO MANY PEOPLE TO THANK for your opinions and advice!

Thanks so much for so many replies. You all made me feel so so much better. Things are clearer now.  I will still wailt another week or two before I begin to taper, but not another month, as long as I still feel like I do now. But I'm going to keep those cuts at 2%.

You are all so caring and wonderful.  Sometimes I can be pretty bothersome, but you never give up on me!  THANKYOU,

 

Heath

[[be...]]

OH SO MANY PEOPLE TO THANK for you opinions and advice!

Thanks so much for so many replies. You all made me feel so so much better. Things are clearer now.  I will still wailt another week or two before I begin to taper, but not another month, as long as I still feel like I do now. But I'm going to keep those cuts at 2%.

You are all so caring and wonderful.  Sometimes I can be pretty bothersome, but you never give up on me!  THANKYOU,

 

Heath

Good for you.

[[ga...]]

Gard ..... The Amazon product is called " PEA powder" by FE health products , fulfilled by Amazon. Pure PEA powder made in the US. Sorry I couldn't figure out a link from my IPad App. But you should be able to find it if you search PEA powder on the Amazon site .

MiYu

 

Ps anyone have any experience with this burning skin thing ? , it's not just skin, it's my flesh too.

It must be a benzo WD symptom , though it doesn't seem so common , I Havent found anyone who has it non stop. 

Gard , I don't know if it would be considered neuropathy? I wonder of the PEA would help it?

Hi M Yes, I have it and have had it for ages, its just one of my worst symptoms, I can't find any relief and I'm too darned scared to take any supplements, half a paracetamol (acetaminophen) made me feel worse, and CBD oil was hell so I've not tried anything since.

 

 

 

Love Nova xxx :smitten:

 

I'm sorry Miyu and Nova, my brain turned off today. Like the electricity got turned off. Feel a little unsure if it is going to stay on now or turn off again.

 

My burning seems to be skin, but sometimes eyes, nostrils, stuff like that. I'm not sure if PEA works on pain that originates in the brain or in the nerves only. I don't understand glial cells. My brain is at about 50% right now, so I'm not even going to guess.

 

Gard

[[ga...]]

  I am still here.  Sorry haven't been posting since I am still in such agony.  Yes I have the burning also.  Its truly awful and at the point I don't know what to do. I am very med sensitive now so the gabapentin didn't help.  She gave me Lyrica but it interacts with my BP pill so I'm too scared to try it.  I have been holding now over 6 months and am at an impasse.  Sorry MiYu that you ahve this also.  Nothing helps.  My pain meds used to but not so much anymore.  Very scared also and sad. 

 

I'm so sorry, free.

[[...]]

Gard ..... The Amazon product is called " PEA powder" by FE health products , fulfilled by Amazon. Pure PEA powder made in the US. Sorry I couldn't figure out a link from my IPad App. But you should be able to find it if you search PEA powder on the Amazon site .

MiYu

 

Ps anyone have any experience with this burning skin thing ? , it's not just skin, it's my flesh too.

It must be a benzo WD symptom , though it doesn't seem so common , I Havent found anyone who has it non stop. 

Gard , I don't know if it would be considered neuropathy? I wonder of the PEA would help it?

Hi M Yes, I have it and have had it for ages, its just one of my worst symptoms, I can't find any relief and I'm too darned scared to take any supplements, half a paracetamol (acetaminophen) made me feel worse, and CBD oil was hell so I've not tried anything since.

 

 

 

Love Nova xxx :smitten:

 

OH Nova , I'm sorry , it is awful isn't it? I guess one day it will go away, one day some time in what seems like the distant future ! But who knows for sure with this business when anything will happen.

How are you feeling with your up dose? I hope it's helping you stabilize.

( you must be across the pond if you have paracetamol ? I grew up in the UK )

 

Gard....

[[...]]

Gard ..... The Amazon product is called " PEA powder" by FE health products , fulfilled by Amazon. Pure PEA powder made in the US. Sorry I couldn't figure out a link from my IPad App. But you should be able to find it if you search PEA powder on the Amazon site .

MiYu

 

Ps anyone have any experience with this burning skin thing ? , it's not just skin, it's my flesh too.

It must be a benzo WD symptom , though it doesn't seem so common , I Havent found anyone who has it non stop. 

Gard , I don't know if it would be considered neuropathy? I wonder of the PEA would help it?

 

Oh wow, I found several products with similar chemical names. What I get is called Palmitoylethanolamide. Just that in a gelatin capsule, nothing else added. And it is called PEA-opt certified. I will have to check out what that means.

 

I believe the PEA powder I mentioned above is exactly that .... The palmitoylethanolamide.... Just that in powder form....

[[...]]

  I am still here.  Sorry haven't been posting since I am still in such agony.  Yes I have the burning also.  Its truly awful and at the point I don't know what to do. I am very med sensitive now so the gabapentin didn't help.  She gave me Lyrica but it interacts with my BP pill so I'm too scared to try it.  I have been holding now over 6 months and am at an impasse.  Sorry MiYu that you ahve this also.  Nothing helps.  My pain meds used to but not so much anymore.  Very scared also and sad. 

 

I'm sorry you have this too Free.... Yes it is awful... Perhaps it's harmless though ,just really nasty.

I understand feeling scared and sad, I do too, I often feel like so much wasted life , and then I get angry , which of course doesn't help at all, so I just try to accept as much as possible to make the journey more bearable.

MiYu 

[[He...]]

MiYu, Gard, CANTFLY,  Freeme, stellabee, Nova,  and anyone else who is suffering,

I am so sorry that you are experiencing such pain. I hope you all begin to get relief real soon.  I don't know what that pEA thing is but hopefully it will help atleast some of you real soon. Hang in there.  It just has to turn around soon. Don't give up.

 

Sending you strength, courage, and hope to be strong, patient, and accepting, knowing that the end of your taper will show you your rainbow.

 

I know, it's easier said than done. Sounds like a cliche. But I seriously do feel for you. I know it is hell on earth to be where you are. But your good days WILL come.

 

Heath  

:therethere: :therethere: :mybuddy: :mybuddy:

[[Ca...]]

Thanks Heath... Its usualy me that feels helpless that i cant help someone...

 

Everyone, please excuse the possible crazyness to come... -but i am systimaticly trying everything and anything, until i can get these specialists sorted out... Things are getting worse by the hour...

Waiting for return calls... yay

First i want a gastro EEG done...  got my GP Dr tomorrow night...

Am not too bad when laying down, which is a saving grace, and more than many get...

Am hanging in, Disteacting and knowing that tomorrow is a new day with new possibilities... -just as BG has taught me...

 

We will all find better days, and fantastic years...

 

[[fr...]]

  Such kind loving people here.  Can't MiYu, Valley, Gard, Heath and all others it means a lot to have the support.  I pray we all get some relief.  I despair that it just won't happen for me.  I have to get out of this black frame of mind.  Pain will do that to you.  If I could ever get a break I think I could stand it more but it is relentless now.  Hopefully an answer will present itself soon.  I just can't think at the moment.  Hoping everyone has a better day today and thank you all again. 

[[ga...]]

Warm thoughts and cyber hugs to everybody. Especially thinking of those who are suffering. I get windows, so don't worry about me. But I remember those days of no windows. My heart goes out to everyone stuck in waves.

 

I met someone who rapid tapered K (because she didn't know better) and was stuck in waves for 2 years. She had 2 small children she put in daycare. She held on with support from her husband and a telephone friend. And then the waves started to subside. Now she is healed and is a teacher at a local college. I could not believe the story of suffering she was telling me and looking at her today. She is free! One day, we will all be free!

 

Gard

[[Bl...]]

Hello all. New to this group. Currently on my 3rd and most difficult taper.  Was prescribed 20mg valium in February 2016. Was pretty successful at cutting down to 12 mg and started to feel bad sxs. In retrospect i should have held, but instead I panicked and updosed back to 13mg. Seemed to work well for 2 weeks then started getting bad sxs again. Went up to 15, which did nothing and decided to throw in the towel and go all the way back up to 20mg.  Was doing well for several weeks, but now the past 3 days have been severe sxs.  Learning a lot from this group. Wish i would have found it earlier. Scheduled to go on vacation on 3/26.  A little bit worried about that. Hope i get some relief soon.  Probably going to hold here for awhile and try to get stable.

 

Much love

BJ

[[Ca...]]

Warm thoughts and cyber hugs to everybody. Especially thinking of those who are suffering. I get windows, so don't worry about me. But I remember those days of no windows. My heart goes out to everyone stuck in waves.

 

I met someone who rapid tapered K (because she isn't know better) and was stuck in waves for 2 years. She had 2 small children she put in daycare. She held on with support from her husband and a telephone friend. And then the waves started to subside. Now she is healed and is a teacher at a local college. I could not believe the story of suffering she was telling me and looking at her today. She is free! One day, we will all be free!

 

Gard

Thanks Gard, But sorry, we worry/care about you too... and not just because you make a great special cake...

I just wanted to say thanks for throwing that story into the mix... was a good day to hear it...

 

Am feeling much better than earlier today... just a small change in one of my meds... not a solution, but an improvment...

 

Best wishes to all and extra to those not so well...

 

A Welcome to BlackJack... -BJ i left a reply on the updose thread, but much the same as the existing replies...

[[ga...]]

 

Thanks Gard, But sorry, we worry/care about you too... and not just because you make a great special cake...

 

Am feeling much better than earlier today... just a small change in one of my meds... not a solution, but an improvment...

 

Best wishes to all and extra to those not so well...

 

A Welcome to BlackJack... -BJ i left a reply on the updose thread, but much the same as the existing replies...

 

OK, I confess, I ordered the cake from a bakery. And it was supposed to look like a wedding cake!   (Maybe that thread was why my brain crashed! )

 

Am glad you have found some improvement and sure hope it continues!

[[ga...]]

Welcome, Blackjack. Holding worked for me and for a lot of others. If your brain is in need of stability, a l-o-n-g hold can be just the thing. Hope it gives you some relief.

 

Warning, there is a lot of weird stuff going on around here: giant snails and sloths, chickens riding tortoises, V's beloved chickens under constant threat of becoming someone's dinner, etc. But we're not the only crazy thread. Just follow Cantfly around and you'll find plenty of craziness! Shh. Don't let him know I said that.

 

Gard

[[Bl...]]

Welcome, Blackjack. Holding worked for me and for a lot of others. If your brain is in need of stability, a l-o-n-g hold can be just the thing. Hope it gives you some relief.

 

Warning, there is a lot of weird stuff going on around here: giant snails and sloths, chickens riding tortoises, V's beloved chickens under constant threat of becoming someone's dinner, etc. But we're not the only crazy thread. Just follow Cantfly around and you'll find plenty of craziness! Shh. Don't let him know I said that.

 

Gard

Im sure i will be adding some craziness to the mix.  Im hurtin right now, brother.

[[...]]

Warm thoughts and cyber hugs to everybody. Especially thinking of those who are suffering. I get windows, so don't worry about me. But I remember those days of no windows. My heart goes out to everyone stuck in waves.

 

I met someone who rapid tapered K (because she isn't know better) and was stuck in waves for 2 years. She had 2 small children she put in daycare. She held on with support from her husband and a telephone friend. And then the waves started to subside. Now she is healed and is a teacher at a local college. I could not believe the story of suffering she was telling me and looking at her today. She is free! One day, we will all be free!

 

Gard

Thanks Gard, But sorry, we worry/care about you too... and not just because you make a great special cake...

I just wanted to say thanks for throwing that story into the mix... was a good day to hear it...

 

Am feeling much better than earlier today... just a small change in one of my meds... not a solution, but an improvment...

 

Best wishes to all and extra to those not so well...

 

A Welcome to BlackJack... -BJ i left a reply on the updose thread, but much the same as the existing replies...

 

HI Cantfly.... I m sorry you are suffering , I hope you can sort things out soon. I found this form the Ray Peat forum relative to ' transit ' issues ....it is also about hormones for women , but still some good info on fiber from carrots and how a simple carrot salad can help in many ways

http://www.functionalps.com/blog/2012/09/28/ray-peat-phd-on-the-benefits-of-the-raw-carrot/

 

I hope you find something useful there.

My thoughts go out to everyone who is suffering , I'm in that boat too right now, very difficult . Waking up with cortisol surges which is horrid. Along with the usual other symptoms , burning , fatigue stress intolerance, not much change 

 

Welcome Blackjack. You'll get good support here.

 

Hello dear Heath , Gard ,  :smitten: I hope you are both doing ok or better.

 

Hi everyone else here , my friends and supporters

Love, MiYu 

 

Ps , anyone have any remedies for the early morning cortisol surges ...? They are stressful and exhausting! I wonder if any particular night time foods might help.....protein? Carbs? Salt? Not sure...

 

[[Ca...]]

 

Thanks Gard, But sorry, we worry/care about you too... and not just because you make a great special cake...

 

Am feeling much better than earlier today... just a small change in one of my meds... not a solution, but an improvment...

 

Best wishes to all and extra to those not so well...

 

A Welcome to BlackJack... -BJ i left a reply on the updose thread, but much the same as the existing replies...

 

OK, I confess, I ordered the cake from a bakery. And it was supposed to look like a wedding cake!   (Maybe that thread was why my brain crashed! )

 

Am glad you have found some improvement and sure hope it continues!

well it was one wild night... Free is still partying, she is playing led zeppelin on BG's music thread... I liked the wedding dress... it was very shell fish... and the spoon to eat the cake... you could shovel it in with that... and poor Julz is still cleaning up the mess we left....

-wonder what crazy people do for fun..

 

Lol... -I was going to mention chickens turtles sloths and the odd slug n snail... but i thought we might never see him again...

 

[[be...]]

MiYu, at bedtime a glass of good O.J and  half any type of Nut butter sandwich. I think Liver uses all glucose at night and around 3am we are depleted, I would try for a wlhile at least 2 wks or more.  Hi Cant.....

[[Va...]]

Hello all. New to this group. Currently on my 3rd and most difficult taper.  Was prescribed 20mg valium in February 2016. Was pretty successful at cutting down to 12 mg and started to feel bad sxs. In retrospect i should have held, but instead I panicked and updosed back to 13mg. Seemed to work well for 2 weeks then started getting bad sxs again. Went up to 15, which did nothing and decided to throw in the towel and go all the way back up to 20mg.  Was doing well for several weeks, but now the past 3 days have been severe sxs.  Learning a lot from this group. Wish i would have found it earlier. Scheduled to go on vacation on 3/26.  A little bit worried about that. Hope i get some relief soon.  Probably going to hold here for awhile and try to get stable.

 

Much love

BJ

Welcome Blackjack! Your taper sounds almost identical to my own. I started at 20mg of V and was fine all the way to 12.5. The cut after that level sent me over the edge and I ended up holding for 6 months with very gradual improvement which included waxing and waning of sxs. I started tapering very slowly after 6 months and am striving to do a symptom based taper. I do get sxs but remain functional and at times feel completely normal but have to make frequent changes based on the symptom pattern. 

 

You'll get great advice and support here. We're glad you're with us! --V

[[Va...]]

MiYu, at bedtime a glass of good O.J and  half any type of Nut butter sandwich. I think Liver uses all glucose at night and around 3am we are depleted, I would try for a wlhile at least 2 wks or more.  Hi Cant.....

OJ is an excellent natural cortisol suppressant. I put powdered vitamin c in mine. 

[[...]]

Thank you Begood and Valley..... Any alternatives to OJ.? I don't do well with citrus for some reason. Perhaps Vit C , and I can do the nut butter sandwich 

[[Al...]]

Blackjack23,

 

Welcome aboard my friend. As you have heard, there are a great bunch of buddies here all with somewhat similar yet different stories. You will in deed get great advise and support here.

 

I just came back from two weeks in Mexico. The toughest part part getting there and getting back, in between I had a blast! You will be fine once you get past the anticipatory anxiety.

 

Find your peace! Rest your mind!

 

ATU 🙏

[[Ca...]]

Hey Miyu BG Valley... glad i stayed up for all the good info..

Thanks Miyu for the link, it was surprising, that i had it about couvered from what my body has taught me over the years... -but my combinations and timing are not right... In a way, the next step up from a FODMAP diet, i think... but i am lazy and still eat so many naughty things...

 

Hope you feel much better asap...

 

Must find my coffin bed, its getting light... night All...