The Long Hold Support Group

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MiYu, My heart goes out to you too. I am so like you. I'm feeling discouraged and frustrated as well. I'm in a wave again after a nice month of a wavy window. I don't know how long it is going to take for my brain to settle down so that I can even start to cut. I was "naughty" and went ahead and cut .0019mg on Monday. Today I've been dealing with increased sxs but not too severe. It's hard to believe that I would get any symptoms from a .0019mg cut .16% of my current dose. I suppose since I'm already in a wave I can't know if the cut caused the increased sxs or if it would have gone that way anyway. I'm just desperate to have some movement towards getting off of these drugs.

 

Thank you TNTD....

I'm sorry you are also having a hard time tapering......I understand what you mean that it's hard to comprehend how the brain wou do even notice such a small change . But apparantly it does .,

I remember when I was getting off the steroids , I would take a minuscule amount , after CTing the majority of my dose ....I had to take that tiny amount or I would get horrific WDs . I also reacted really badly to it so it was damned if I did and damned if I didn't . Eventually I was able to st that tiny amount . No doctor could believe that taking such a minuscule amount would do anything , but it did somehow. It seems these drugs are like that too , our bodies DO register theses tiny chemical changes .

I hope you feel better soon ,

Love, MiYu 

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  MiYu,  I am just like you.  Burning is awful for me and the holds just don't help me either.  I just cut .5 mg. from my 14 mg. dose and I am so sick and burning ramped up etc etc.  I know exactly what you mean about feeling so bad that it works for others but never us.  Valium was a bad decision for me too I think.  All we can do is keep trying I guess.  It scary and I am hoping my Dr. will go along with all this and not cut me off. Another worry.  I go tomorrow so will see what he says.  Hoping both of us feel a little better soon, this is truly awful.  :'(

 

free , I'm sorry you too are having a hard time..... The burning is awful isn't it ... I think it's a side effect and a WD effect. It's scary , like it feels so bad for your body to be that hot all the time .

Did you cross from K?

Yes , I think all we can do is keep trying , and hope that things get easier . I do wonder if a different benzo would be better .... I will keep researching and see what's out there... Nothing yet.

 

I just know that Ativan doesn't require liver enzymes , but goes straight to gluco something . As I'm already dosing three times a day it really wouldn't matter if I had a benzo with no metabolites, might even be better for me being a slow detoxer........

 

Need to find the right doc that I can trust .

 

Keep going ....... Keep trying .

Love, MiYu

[[ly...]]

Lynn, do you remember the person who couldn't metabolize V ? Perhaps I could connects it's them and find out who their doctor is .......

 

MiYu, I can't remember.  I just scanned wd support and taper support and didn't recognize which thread it was.   It was someone on here to support her boyfriend.  He took some kind of test that shows he shouldn't/can't take V.  The test showed a different benzo was a good one for him.  I can't remember which one that was!  Maybe Ativan.  He was feeling horrible ever since he crossed to V and has started substituting out of the V.  I think he just swapped out 5mgs of V.  I'm sorry that I can't remember/find the thread.  I'll look some more.

[[ga...]]

Miyu, Thank you of coming on and updating us. I've been wondering how you've been.  I went through that continuous, horrible burning before my long hold. My heart breaks for you. I'm so sorry that you can't seem to find relief in any method of tapering. It does seem like perhaps you are having an adverse reaction to the drug itself. I wish there was some way to know for sure. I have similar issues as you do, ultra-rapid metabolizer of Valium and slow to detox. Yet, somehow, the slow taper of Librium is working for me so far. Doesn't make sense, though, because Librium has tons of metabolites, too. There's so much we don't know about these drugs. And yet doctors hand them out so readily. It's so wrong. I pray you find a path off of these drugs soon. I know there must be a way. Don't give up. Sending you gentle cyber-hugs. 

 

Gard

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Lynn, do you remember the person who couldn't metabolize V ? Perhaps I could connects it's them and find out who their doctor is .......

 

MiYu, I can't remember.  I just scanned wd support and taper support and didn't recognize which thread it was.   It was someone on here to support her boyfriend.  He took some kind of test that shows he shouldn't/can't take V.  The test showed a different benzo was a good one for him.  I can't remember which one that was!  Maybe Ativan.  He was feeling horrible ever since he crossed to V and has started substituting out of the V.  I think he just swapped out 5mgs of V.  I'm sorry that I can't remember/find the thread.  I'll look some more.

I remember that one too. I wish I could recall who it was.  --V

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Lynn, do you remember the person who couldn't metabolize V ? Perhaps I could connects it's them and find out who their doctor is .......

 

MiYu, I can't remember.  I just scanned wd support and taper support and didn't recognize which thread it was.   It was someone on here to support her boyfriend.  He took some kind of test that shows he shouldn't/can't take V.  The test showed a different benzo was a good one for him.  I can't remember which one that was!  Maybe Ativan.  He was feeling horrible ever since he crossed to V and has started substituting out of the V.  I think he just swapped out 5mgs of V.  I'm sorry that I can't remember/find the thread.  I'll look some more.

I remember that one too. I wish I could recall who it was.  --V

Valley here is the link for MiYu.

http://www.benzobuddies.org/forum/index.php?topic=184693.msg2432996#msg2432996

[[ly...]]

 

 

Way to go BG! :thumbsup:

[[Va...]]

Lynn, do you remember the person who couldn't metabolize V ? Perhaps I could connects it's them and find out who their doctor is .......

 

MiYu, I can't remember.  I just scanned wd support and taper support and didn't recognize which thread it was.   It was someone on here to support her boyfriend.  He took some kind of test that shows he shouldn't/can't take V.  The test showed a different benzo was a good one for him.  I can't remember which one that was!  Maybe Ativan.  He was feeling horrible ever since he crossed to V and has started substituting out of the V.  I think he just swapped out 5mgs of V.  I'm sorry that I can't remember/find the thread.  I'll look some more.

I remember that one too. I wish I could recall who it was.  --V

Valley here is the link for MiYu.

http://www.benzobuddies.org/forum/index.php?topic=184693.msg2432996#msg2432996

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Wow, BG, I am impressed! Next time I am looking for post, I will know who to ask!

 

Gard

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Thanks you Begood  :smitten:

And thank you all for your kind words and encouragement ,

 

Love, MiYu  :smitten:

[[He...]]

Lynn, do you remember the person who couldn't metabolize V ? Perhaps I could connects it's them and find out who their doctor is .......

 

MiYu, I can't remember.  I just scanned wd support and taper support and didn't recognize which thread it was.   It was someone on here to support her boyfriend.  He took some kind of test that shows he shouldn't/can't take V.  The test showed a different benzo was a good one for him.  I can't remember which one that was!  Maybe Ativan.  He was feeling horrible ever since he crossed to V and has started substituting out of the V.  I think he just swapped out 5mgs of V.  I'm sorry that I can't remember/find the thread.  I'll look some more.

 

I may be all wrong, but I think it was either Pleasebehere or baddove who were the fast metabolizers of valium.

But I'm not sure,

 

Heath

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Oh , never mind! I just read Begood's link about the person who can't metabolize valium.

Great detective work Begood. . I hope it helps MiYu!

 

Heath

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  MiYu, I crossed from Ativan and am so sorry now I did.  I tried to go back after over a year but it didn't work too well.  I really didn't give it much time.  I always panic because when the burning ramps up it is unbearable, as it is now with the cut I just made.  I don't know what to do at this point either. Dr. just gave me gabapentin to try again but I tried that twice and burning got worse but I didn't really give it much time.  So scared and don't know what to do.  Praying for us both and all here.  Great supportive group. 

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Miyu I don't post much anymore but I came across your post. I am sorry that nothing seems to be working for you.  I know that Rosegal (she had a buddie blog) had an awful time with Valium.  She tried to taper from it and just couldn't. She then switched back to Ativan and successfully tapered from it. You may want to send her a PM as to how she did her cross over back to Ativan and how long she held before she re started her taper.    She does not post at all anymore as she is healed and doing great. 

 

I hope this helps you. This whole process is a nightmare but you will find your way -it may be different from others, but it will be what works for your body. 

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Miyu I don't post much anymore but I came across your post. I am sorry that nothing seems to be working for you.  I know that Rosegal (she had a buddie blog) had an awful time with Valium.  She tried to taper from it and just couldn't. She then switched back to Ativan and successfully tapered from it. You may want to send her a PM as to how she did her cross over back to Ativan and how long she held before she re started her taper.    She does not post at all anymore as she is healed and doing great. 

 

I hope this helps you. This whole process is a nightmare but you will find your way -it may be different from others, but it will be what works for your body. 

 

thank you Kgirl , I appreciate that..... it's all such a gamble as to what will work and what won't. I will see if I can get in touch with Rosegal.

all I knwo right now is Valium has turned into a nightmare for me!

love, Miyu

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  MiYu, I crossed from Ativan and am so sorry now I did.  I tried to go back after over a year but it didn't work too well.  I really didn't give it much time.  I always panic because when the burning ramps up it is unbearable, as it is now with the cut I just made.  I don't know what to do at this point either. Dr. just gave me gabapentin to try again but I tried that twice and burning got worse but I didn't really give it much time.  So scared and don't know what to do.  Praying for us both and all here.  Great supportive group. 

 

Hi Free, so sorry you are having such a a hard time..... can you  tell me how you tried your cross back to ativan? I do know that it metabolizes very differently in the liver from any other benzo.

 

I did some more reserach on my genetic variants and valium metabolizm , and i am a rapid metabolizer, so it's definitely not that i don't metabolize Valium at all like the person in the post that was mentioned. I think perhaps because i metabolize it so fast it doesnt have much therpeutic effect , and even less when i make a cut, and then as i am a poor detoxer, it takes a long time to leave my system , so I am left with less therapeutic V and a long wait for it to leave , and thus extended wds. This is just my summation based on what i can figure out.

 

I doubt my doc would switch me to Ativan, so Id have to find a new doc. I wonder if there are any in No Cal who are benzo wise other than the two who are known......one of whom I see and who really doesn't know that much anyway, except that you have to slowly taper !

 

He's making a ton of money from people and really hasn't helped me much.....

I sure hope we both start to feel some improvement , and find a way through this....

 

love, Miyu 

by the way I am on just under 400 mgs gabapentin, I've been on it for years for restless legs. It never bothered me much... I have cut occasional 10 mgs here and there, and the burning does amp up, but it passes from that fairly quickly, The burning seems very much to do with the V wds. for me, along with a host of other symptoms.....

 

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  MiYu,  I tried it for a few days and it didn't go well but I think I probably didn't give it a good chance.  I have been on the valium around 2 years now so I"m kind of scared to try again to go to Ativan.  Must say I never had any problems with it, wish I would have stuck with it.  I'm scared to add the gaba also my Dr. gave me yesterday.  It seems to make the burning worse but i don't give it much of a chance.  I'm so scared of everything now.  You know how it is.  I have to do something,  this last cut of just .5 mg off a 14 mg. dose slayed me and I still feel bad.  I don't know if I"m a fast metabolizer, I never was tested.  I just know I have to do something different before I lose it.  Good luck. 

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  MiYu,  I tried it for a few days and it didn't go well but I think I probably didn't give it a good chance.  I have been on the valium around 2 years now so I"m kind of scared to try again to go to Ativan.  Must say I never had any problems with it, wish I would have stuck with it.  I'm scared to add the gaba also my Dr. gave me yesterday.  It seems to make the burning worse but i don't give it much of a chance.  I'm so scared of everything now.  You know how it is.  I have to do something,  this last cut of just .5 mg off a 14 mg. dose slayed me and I still feel bad.  I don't know if I"m a fast metabolizer, I never was tested.  I just know I have to do something different before I lose it.  Good luck. 

 

My doctor gave me gabapentine and it made my face burn so they told me not to take it again. Since you are already having problems with buringin it's hard to say if it causing it too or if it's from the w/d. I just wanted to let you know that gaba by itself can cause buring as a side effect.  I also just did a .2% cut and am having some pretty bad w/d sxs from it so even that small cut you did could be causing you problems. It's crazy how our bodies can react to such tiny dose reductions. I envy those people who can do the larger cuts and have almost no symptoms. We all have our problems though. We'll get through this in time.

 

Over on SA there is a thread called The slowness of Slow tapers and it starts off talking about a guy who expected to take 12 years to taper off of 25mg of V. That is around what I have calculated for myself with my 1.168mg of K. If it takes that long but I am functional then that's ok. I need to get back to a window though. This wave just keeps getting worse and I wonder if it's because I just couldn't resist making that teeny tiny cut or if it's just because that's where my CNS is at the moment.

 

Thinking of you all and wishing we all had crystal balls to help us in our decisions.

 

Hugs and healing,

T

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  I know, its just so hard to know what is what.  I am not functioning so I would love to get this burning under control and feel I would do so much better.  I pray something changes for all of us. Wish they would do more research into all this to help us. 

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Free, I agree. It is hard to know what is what and it would be nice if they did some real research into this.  Hopefully holding will help you become functional. Even though I'm in a wave it isn't quite as bad as the wave I was in before I started holding. I'm still just barely functional right now while I wasn't functional at all before I started holding.

 

I really like what I've heard other's say about holding until they were functional for months not just weeks. I think that tells us that we are ready to start tapering again. The hard part is convincing ourselves to hold for that long. It's so hard but this group and the positive posts help a lot

 

 

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  MiYu,  I tried it for a few days and it didn't go well but I think I probably didn't give it a good chance.  I have been on the valium around 2 years now so I"m kind of scared to try again to go to Ativan.  Must say I never had any problems with it, wish I would have stuck with it.  I'm scared to add the gaba also my Dr. gave me yesterday.  It seems to make the burning worse but i don't give it much of a chance.  I'm so scared of everything now.  You know how it is.  I have to do something,  this last cut of just .5 mg off a 14 mg. dose slayed me and I still feel bad.  I don't know if I"m a fast metabolizer, I never was tested.  I just know I have to do something different before I lose it.  Good luck.

 

HI Free, so frustrating ..... I think what I'm going to do for now is stay with the V , keep researching. I did call the genetic testing company that Helpingmyex recommended , they were every helpful but I'd have to go and see a practitioner who works with them , and that's an hour and a half away and too much for me right now.

So much stress in my body I can't tolerate cars and appointments!

 

Have you tried a microtaper ? I think a .5 mg cut would slay me too if I did it all at once.

 

Hang in there, you never know when things might change .

How often are you dosing per day? Kitty bean uses grapefruit juice fro her fast metabolizm of Valium .

You could try the 23andme test if you wanted to see your genetics and then snpedia is a free service that can tell you what kind of metabolizer you are of Valium .

There are many variants tho that can effect us.

But the basic liver metabolizm can be seen . The test is around $100 and you just have to send a saliva sample. No doctors appointments or anything . I could help you with the genetics if you got it as I have looked everywhere !

I still think the Genesight is better because they specifically tell you how you do with a bunch of medications and list all the different benzos , but you have to go to a participating clinician. They will send you a list if you call them. I am not near a major city so it's hard for me to see anyone . They do accept insurance too, so it would be free .

 

I may end up going that route if this doesn't get any easier . Things like how we detoxify metabolites can also effect how we feel too.

 

Hang in there!

Love, MiYu 

 

 

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Thinking of you all and wishing we all had crystal balls to help us in our decisions.

 

 

I know really TNTD! 

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Free- the gabapentin might help , but it would have to be tapered as well ! So I don't think it's worth it.

I looked up neuropathy for the burning , and I've been sipping oat tips tea , and just got some thiamine , two things supposed to help burning on diabetics . I don't know if it's helping. My burning is a bit better today , I'll keep you posted .

My adrenals feel really weak today too, it's so stressful on them this WD ......

 

MiYu

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Miyu, Thank you of coming on and updating us. I've been wondering how you've been.  I went through that continuous, horrible burning before my long hold. My heart breaks for you. I'm so sorry that you can't seem to find relief in any method of tapering. It does seem like perhaps you are having an adverse reaction to the drug itself. I wish there was some way to know for sure. I have similar iss :hug:ues as you do, ultra-rapid metabolizer of Valium and slow to detox. Yet, somehow, the slow taper of Librium is working for me so far. Doesn't make sense, though, because Librium has tons of metabolites, too. There's so much we don't know about these drugs. And yet doctors hand them out so readily. It's so wrong. I pray you find a path off of these drugs soon. I know there must be a way. Don't give up. Sending you gentle cyber-hugs. 

 

 

Thank you Gard , you're very kind 

I can't remember , have you always been on Librium , or were you on Valium at one point ?

You said you were going to cut a whole pill ? That's a lot isn't it? Or did I misread something. .....

 

Hugs to you too , love, MiYu  :hug:

 

 

[[fr...]]

  MiYu,  I have the L- Thianine here but have been too scared to try it.  I tried Magnesium one time and it revved me up so bad.  I am extremely Vit D deficient and alos my sodium level is a little low.  I dose twice a day.  I tried 3 times a day once and it didn't make any difference.  I might look into the testing just to see what is what. The tea sounds promising also. Thanks for the ideas.  The burning also is in my mouth on and off and sometimes my stomach burns.  So so distressing.  Thanks all for trying to help.  I have held now for over 7 months, maybe 8 and just made this small cut.  I never got any better during the hold, in fact got worse.  So I figured I would try a cut and see if it might help.  we shall see.  Thanks again all.