The Long Hold Support Group

[[...]]

Hopefreegirl, Kitten Beanbag and Valley Umm,

After one, 25 mg dose of the Vistaril aka Ataraxia aka hydroxyzine, I actually started to feel a window open and remain partially open for about 20 hours now.  Histamine is also a neurotransmitter even though may people just associate it with allergic reactions. It is present throughout the body but acts as a neuortransmitter in the brain. So, I am very please with it after only one dose. It did make me extremely tired though, which is a common sideffect and often used off lable for sleep, like Benadryl.

Kitten Beanbag. I was diagnosed by a hematologist 16 years ago with MTHFR. This is before ithad received much exposure and  before the invention of 23& Me. Since you mentioned 23&Me, I am curious if you have any MTHFR and/ or CBS mutations listed. I have them as well as many genetic neurotransmitter mutations.......Makes it a bit more convoluted to treat mental health issues. Just an FYI,  there is a site called MTHFR.com that will take your 23& me data and break it down further into about 50 pages of gene allows or mutations so you or your doctor will have better understanding. Love to all!

Mellows

very glad it worked for you! I'm compound heterogeneous for 677 and 1298. There's a Mthfr thread on this group. Supposedly through this process we are high in histamine anyway maybe that is why we have such reactions to things. Yes I've been prescribed visitril for anxiety on and off for over 20 years. Happy for you!

I have the same compound heterozygous on the MTHFR, those are the most common but what havoc they can cause. I also have CBS mutations and almost every single one of my neurotransmitter genes have hetero or homozygous. I wish doctors would start learning more about these mutations. Do you see a functional medicine or Integrative medicine doctor for your mutations? Just curious if you had a doc treating you for those.

Hope you are well

Mellow

 

Mellow... I have a whole bunch of hetero and homozygous mutations too.....I'm double COMT +\+ and about 5 other MTHFR . It's always been too complicated for me to sort out, so I just stay away from methylation vitamins for now, I try to get my Bs through food to keep methylation happening , but who knows ......good news on the vistaril.... I wonder if there's a more natural antihistamine available without prescription .....I try to keep a low histamine diet....

MiYu

 

[[la...]]

Hi all ,,,mind if I jump in?  what is a low histamine diet?

 

I have MTHFR C677T heter

 

along with a bunch of others that I have no idea what it all means

 

I guess I just wonder if that makes me a fast metabolizer for Valium

[[ho...]]

i have tried a methylated B complex and it sent me into mass withdrawal. my vitamin B is a little low but benzos cause this as well. i know i will NEVER take another methylated vitamin during this process. almost 50% of the population have the gene mutations, its just if theyre "expressed" do they cause a problem. which we probably expressed ours because its caused by stress, diet and lifestyle. i do not know any of my snps i just got the two genes checked. i didnt do the 23andme. to be honest im not even worried about these mutations until i get off these benzos. having the two gene mutations i was prompted to get tested for by my functional doctor because of my sensitivity to medications and family history of anxiety. there are many sites with low histamine diets online.

[[...]]

Hi all ,,,mind if I jump in?  what is a low histamine diet?

 

I have MTHFR C677T heter

 

along with a bunch of others that I have no idea what it all means

 

I guess I just wonder if that makes me a fast metabolizer for Valium

 

Hi Lainey....from what I have read , Valium is metabolized in the liver by two specific enzymes ( actually my doc told me this). They are CYP2C19*17 and CYP2D6. If you have a ' detox profile' from

23andme, which you would have gotten with your other genetic profile from them , you can check if you have mutations in either of these two. I have both in my profile. If you don't have any mutation of these then you would likely be a normal metabolizer of Valium.

That's the best of my limited knowledge ..... It's all a bit beyond me , but I google these things......as far as I know none of the MTHFR mutations affect Valium metabolism.

As Hopefree said, you can look up a low histamine diet and get a list of foods online .

 

MiYu 

[[ho...]]

Hi all ,,,mind if I jump in?  what is a low histamine diet?

 

I have MTHFR C677T heter

 

along with a bunch of others that I have no idea what it all means

 

I guess I just wonder if that makes me a fast metabolizer for Valium

 

Hi Lainey....from what I have read , Valium is metabolized in the liver by two specific enzymes ( actually my doc told me this). They are CYP2C19*17 and CYP2D6. If you have a ' detox profile' from

23andme, which you would have gotten with your other genetic profile from them , you can check if you have mutations in either of these two. I have both in my profile. If you don't have any mutation of these then you would likely be a normal metabolizer of Valium.

That's the best of my limited knowledge ..... It's all a bit beyond me , but I google these things......as far as I know none of the MTHFR mutations affect Valium metabolism.

As Hopefree said, you can look up a low histamine diet and get a list of foods online .

 

MiYu 

hi miyu all I had was my Mthfr 677 and 1298 tested, I'm heterogeneous for both. I started researching all this but it so complicated and right after did massive cut so have been consumed with that. Since I had horrible reaction to the methylated B I'll never take it again. But I'm still confused with these mutations if we can get folate from foods. I had joined a Mthfr group and some said they were able to get their levels up with food but on Ben Lynch s site he says we can't. So kind of confused with that. I do know one girl specifically on here was fast metabolizer of klonopin and it forced her to dose like five times a day. Are those numbers you referred to as what's called snps? I know the Mthfr gene mutations were enough to prompt my functional doctor to have me tested for it when she found out family history of anxiety and sensitivity to meds. So I'm wondering if I should break down and get the 23andme done to see my metabolism of these benzos. I'm on k and v. It might make my decision as to how to proceed with my taper. Just thinking out loud.

[[ho...]]

Also as far as histamine, I've read we are higher in histamine in this process which causes us to have reactions to food and things. I know I was taking the visitril daily after a 50% cut from a very high dose for the first ten months of my taper. After my next huge cut I quit taking it and have only taken it sporadically since. But have a bunch hoarded for when sleep becomes an issue. Anyone know why we have high histamine through this? Is this what causes our reactions to foods? I know visitril was a life saver after such a huge cut. Definitely helps with the anxiety. I did not know histamine was a neurotransmitter. That is very interesting. There's a guy online called the low histamine chef I think it is. I'm going to research that tomorrow. I know I ate pineapple once which is supposedly high in histamine and had symptoms from it. I may start taking my visitril again more often.

[[He...]]

Hi,

I have absolutely no idea what you are talking about with the MTHFR and CYP.....  and histamine diets, and mutations,etc.  but I wish you all the best in figuring it all out, really. Hope you feel better soon.

Peace and healing to all of you.

 

Heathcliff

[[Va...]]

Hi,

I have absolutely no idea what you are talking about with the MTHFR and CYP.....  and histamine diets, and mutations,etc.  but I wish you all the best in figuring it all out, really. Hope you feel better soon.

Peace and healing to all of you.

 

Heathcliff

I'm with you Heath. I've stayed out of this conversation because I'm ignorant on the subject.  --V

[[be...]]

Hi,

I have absolutely no idea what you are talking about with the MTHFR and CYP.....  and histamine diets, and mutations,etc.  but I wish you all the best in figuring it all out, really. Hope you feel better soon.

Peace and healing to all of you.

 

Heathcliff

I'm with you Heath. I've stayed out of this conversation because I'm ignorant on the subject.  --V

💖Me also, too deep for this "TRUTLE" :D :smitten:

[[ga...]]

Hi,

I have absolutely no idea what you are talking about with the MTHFR and CYP.....  and histamine diets, and mutations,etc.  but I wish you all the best in figuring it all out, really. Hope you feel better soon.

Peace and healing to all of you.

 

Heathcliff

I'm with you Heath. I've stayed out of this conversation because I'm ignorant on the subject.  --V

💖Me also, too deep for this "TRUTLE" :D :smitten:

 

Same here! 

[[Me...]]

Hopefreegirl, Kitten Beanbag and Valley Umm,

After one, 25 mg dose of the Vistaril aka Ataraxia aka hydroxyzine, I actually started to feel a window open and remain partially open for about 20 hours now.  Histamine is also a neurotransmitter even though may people just associate it with allergic reactions. It is present throughout the body but acts as a neuortransmitter in the brain. So, I am very please with it after only one dose. It did make me extremely tired though, which is a common sideffect and often used off lable for sleep, like Benadryl.

Kitten Beanbag. I was diagnosed by a hematologist 16 years ago with MTHFR. This is before ithad received much exposure and  before the invention of 23& Me. Since you mentioned 23&Me, I am curious if you have any MTHFR and/ or CBS mutations listed. I have them as well as many genetic neurotransmitter mutations.......Makes it a bit more convoluted to treat mental health issues. Just an FYI,  there is a site called MTHFR.com that will take your 23& me data and break it down further into about 50 pages of gene allows or mutations so you or your doctor will have better understanding. Love to all!

Mellows

very glad it worked for you! I'm compound heterogeneous for 677 and 1298. There's a Mthfr thread on this group. Supposedly through this process we are high in histamine anyway maybe that is why we have such reactions to things. Yes I've been prescribed visitril for anxiety on and off for over 20 years. Happy for you!

I have the same compound heterozygous on the MTHFR, those are the most common but what havoc they can cause. I also have CBS mutations and almost every single one of my neurotransmitter genes have hetero or homozygous. I wish doctors would start learning more about these mutations. Do you see a functional medicine or Integrative medicine doctor for your mutations? Just curious if you had a doc treating you for those.

Hope you are well

Mellow

 

Mellow... I have a whole bunch of hetero and homozygous mutations too.....I'm double COMT +\+ and about 5 other MTHFR . It's always been too complicated for me to sort out, so I just stay away from methylation vitamins for now, I try to get my Bs through food to keep methylation happening , but who knows ......good news on the vistaril.... I wonder if there's a more natural antihistamine available without prescription .....I try to keep a low histamine diet....

MiYu

Hi MiYu,

One thing that messed with my head was knowing too much about my genetic mutations, especially CBS which can make all other mutations worse so, according to CBS, I went on a crazy low sulfur, low protein diet...Add to that the fact I eat no refined sugar or sugar substitutes, gluten, dairy any try to limit foods high in histamine! I drove myself nuts! I became paranoid of everything I put in my mouth which made anxiety worse and fought against any benefits Klonapin may have had. I've loosened up my diet a bit, take an occasional B complex and try to not be so paranoid of everything now.........What a mess. How to get my life back?!  I'm trying to start by titrating, slowly and lowly the Klonapin.

Mellow

[[...]]

Hi all ,,,mind if I jump in?  what is a low histamine diet?

 

I have MTHFR C677T heter

 

along with a bunch of others that I have no idea what it all means

 

I guess I just wonder if that makes me a fast metabolizer for Valium

 

Hi Lainey....from what I have read , Valium is metabolized in the liver by two specific enzymes ( actually my doc told me this). They are CYP2C19*17 and CYP2D6. If you have a ' detox profile' from

23andme, which you would have gotten with your other genetic profile from them , you can check if you have mutations in either of these two. I have both in my profile. If you don't have any mutation of these then you would likely be a normal metabolizer of Valium.

That's the best of my limited knowledge ..... It's all a bit beyond me , but I google these things......as far as I know none of the MTHFR mutations affect Valium metabolism.

As Hopefree said, you can look up a low histamine diet and get a list of foods online .

 

MiYu 

hi miyu all I had was my Mthfr 677 and 1298 tested, I'm heterogeneous for both. I started researching all this but it so complicated and right after did massive cut so have been consumed with that. Since I had horrible reaction to the methylated B I'll never take it again. But I'm still confused with these mutations if we can get folate from foods. I had joined a Mthfr group and some said they were able to get their levels up with food but on Ben Lynch s site he says we can't. So kind of confused with that. I do know one girl specifically on here was fast metabolizer of klonopin and it forced her to dose like five times a day. Are those numbers you referred to as what's called snps? I know the Mthfr gene mutations were enough to prompt my functional doctor to have me tested for it when she found out family history of anxiety and sensitivity to meds. So I'm wondering if I should break down and get the 23andme done to see my metabolism of these benzos. I'm on k and v. It might make my decision as to how to proceed with my taper. Just thinking out loud.

 

 

Hi all,

On this subject of diet and genetic mutations ( this'll be my lastpost on it I pretty much gave up trying to figure it out. The only useful part for me right now is that I metabolize Valium super fast. I don't even know how useful that info is except that it may mean I don't build up the metabolites in my system the way most do, and so the point of Valium providing a smooth taper may be moot for me.

 

Anyway , for the participation In this support group, long holds are the thing, and I don't think the genetic issues are relevant to that. I think you could look at it as( kitty / Lainey ?) instead of Valium having a super long half life , it won't for fast metabolizers, so multiple dosings a day may be necessary .

 

 

Hope everyone's having good days ..... I'm not , tho my energy is better, feel yucky though

 

Love, MiYu 

 

[[Al...]]

Miyu,

 

Feel better soon. 

 

ATU🙏

[[ga...]]

Me, too, Miyu.

 

Super fast metabolizer of Valium, which is why I chose Librium. But I seem to metabolize that fast, too. Same with the Xanax. Ah well, as you say, multiple dosing is the answer. Three times/day for me and I think I'll do that all the way to zero. Never quite understood why Ashton dropped doses toward the end. Maybe because splitting the pills would have been too hard? I think she did only pill splitting.

 

Had a wonderful window yesterday. Decided to use it hauling free mulch. Oh gosh, I feel like I was run over by a truck. I don't know what came over me!

 

Symptoms creeping back today. Still holding. I think I'm going to get through this with the slow MT and the holds.

 

Hope you get a window soon.

 

Gard

[[Ki...]]

Yes to the methylation genetic booboos- I have ridiculously high homocysteine levels and my arteries are already starting to block up so Im trying to work on that. I cant take any more B12 right now, I guess its hard on a lot of benzo folks! The rapid metabolism is just something you have to figure out by trial and error. I have seen posts where peoples docs put them on cimetadine to slow it down. I just drink a little grapefruit juice about an hour before my pills at bedtime and now I only dose once at night. It was trial and error though and it changes. Too much I get tired and I get fat, but thats my estrogen metabolism going out of whack. Right now Im in a bit of a rough patch Im calling benzo flu, so Im taking about 2 tablespoons. I guess theres no way to measure how much of the enzyme youhave, so you just have to start somewhere. I started with an ounce a day but that was just too much.

[[be...]]

Miyu,

 

Feel better soon. 

 

ATU🙏

ATU, how are your ears doing, better I hope.

[[be...]]

MiYu, thinking of you, hang in there.

[[Va...]]

Me, too, Miyu.

 

Super fast metabolizer of Valium, which is why I chose Librium. But I seem to metabolize that fast, too. Same with the Xanax. Ah well, as you say, multiple dosing is the answer. Three times/day for me and I think I'll do that all the way to zero. Never quite understood why Ashton dropped doses toward the end. Maybe because splitting the pills would have been too hard? I think she did only pill splitting.

 

Had a wonderful window yesterday. Decided to use it hauling free mulch from the Village chipping pile. Oh gosh, I feel like I was run over by a truck. But that's what I would expect at my age in my condition deciding to shovel mulch. I don't know what came over me!

 

Symptoms creeping back today. Still holding. I think I'm going to get through this with the slow MT and the holds.

 

Hope you get a window soon.

 

Gard

The taper guide from bataid has you taking 3 doses of V all the way off. Hmmm......

[[ga...]]

Me, too, Miyu.

 

Super fast metabolizer of Valium, which is why I chose Librium. But I seem to metabolize that fast, too. Same with the Xanax. Ah well, as you say, multiple dosing is the answer. Three times/day for me and I think I'll do that all the way to zero. Never quite understood why Ashton dropped doses toward the end. Maybe because splitting the pills would have been too hard? I think she did only pill splitting.

 

Gard

The taper guide from bataid has you taking 3 doses of V all the way off. Hmmm......

V, what is bataid?

[[Va...]]

Me, too, Miyu.

 

Super fast metabolizer of Valium, which is why I chose Librium. But I seem to metabolize that fast, too. Same with the Xanax. Ah well, as you say, multiple dosing is the answer. Three times/day for me and I think I'll do that all the way to zero. Never quite understood why Ashton dropped doses toward the end. Maybe because splitting the pills would have been too hard? I think she did only pill splitting.

 

Gard

The taper guide from bataid has you taking 3 doses of V all the way off. Hmmm......

V, what is bataid?

It sounds like some cool Batman thing lol. It is Battle Against Tranquilizers. Probably one of the best benzo withdrawal organizations out there right now. That's who Please has been in contact with.  --V

[[...]]

HI everyone , thanks for your well wishes    ( ATU , Begood )

Gard , you had a window , yay!! So happy for you.  sorry it didn't last 

 

I don't think I know what a window feels like ..... I have days where I feel less symptoms , and more energy , like today , but I've never been symptom free since I started out on this taper journey.

Things have definitely improved though. And I do get more good days where I can go out , even for a short while .

Some people I guess don't get windows, but that doesn't mean we are not healing does it?

Perhaps I'll be one of the lucky people where it gets better the lower the dose. 

 

I realized last night that I've been fighting this whole process , wanting it to go away and really not wanting to accept my situation..... I had a good cry and it really helped . I know acceptance has to be a part of this process , you've said it ATU , and others too. It does make things easier to not fight it. No doubt I'll fight it again , but for now I feel more conscious of acceptance .

 

Kitty , and Gard ,( and Valley) I dose three times a day with my Valium , it kind of hits me like a train after I take a dose , which is probably the fast metabolizing .

( yes Bataid does sound like some batman thing V ! ) 

 

Sending love and hugs to everyone and hope things are going ok

MiYu 

[[be...]]

MiYu, from where I am sitting and reading your post, I see some improvement in the words you write, and I am so glad, and yes some do feel better as they go lower, the thing is everyone is different, like no two tapers are the same, you know the drill.... . I think that you have realized one of the most Important thing about anyone going through Benzo withdrawal, [glow=red,2,300]"ACCEPTANCE"[/glow] is so important, almost as important as taking your dosage each day, if we can not accept the process we are going through, it gets really dicey, I keep wondering why I am doing so well, and I honestly think it is because I have accepted everything rather than pushing against it, and I do not think about it, usually only when I am making my brew, or the times I have some minor blips, it reminds me that I am indeed tapering, but then I start doing something or think of other things, I have learned that this benzo taper does not define me. I know you are going to fine. 

[[Al...]]

Yes, Acceptance is so important and once you get the hang of acceptance you can proceed with some assurance. It wont be easy, some days will be easier than others and especially on those hard days we need distraction we need to occupy our time and not sit around looking inside, looking for sensations we can focus on and be scared by.

It gets easier as we learn to accept and distract. It really is a learning experience. We need good self talk as well because when we get those sxs it is so easy to push back and this only makes them stronger.

 

Miyu, your doing just super! 

 

Hugs:

 

ATU 🙏

[[...]]

BeGood and ATU.... Thank you, you are both so kind and sweet. I am truly impressed with you both and everyone who goes through this process , it's really something....what it requires of each of us , how it grows us and brings us to a whole other place in life. In a way it is a gift. I know Baylissa fredericks says this.... When people come out the other side they are changed so much ,and appreciate life so much more.

It is changing me there is no doubt, a difficult path too, and for each of us with what we bring to it .

May we all learn from it and become more loving compassionate people with something to give back.

 

MiYu 

[[ho...]]

It's very unusual how the universe works as I've had a bad day today. And having been tapering for 14 months now, this is what I struggle with the most, acceptance. I was writing a friend on here last night, about my struggle with acceptance and I told him that all this is for a reason, while I may not can see it now, but I know what it is going to be, appreciation for life. And my husband told me today when you are healed you can help others. Just just in these few posts I have just read, it hit on three things that have been discussed in the past 24 hours in my life. And I wasn't going to even go on here tonight. I needed to read these posts for affirmation. Thank you all for posting them.